Even Weirder

If last week was a weird week I haven’t got a clue what this one should be called! I had more vertigo, a migraine from hell, so bad that Mr Myasthenia Kid had to take the day off from work to look after me – more about that later and I can’t share any of my sewing makes over the last few days as they are all birthday presents for friends between 23rd June and the end of August. A little frustrating when I am so pleased with all of them, The good news is that my sewing job list on my phone for the months of May and June have reduced dramatically!

 

As I wrote in my last blog post I attended a course last Wednesday regarding how to use my overlocker. I was so excited about the course and I hate to say it but it was a real let down. It was everything a teaching session shouldn’t be. In a previous lifetime (1996-2005) I held the position of Training Manager at my place of employment. I was responsible for all the training that took place for the 350 plus staff we employed at the time. Not only that I was also sent to various other locations throughout the south-west to teach other Training Managers (they were also sent to work with me to get an understanding of their role) and to teach staff for new store openings. I loved the job and I am not afraid to say that I was bloody good at it. It broke my heart when head office in its wisdom decided to get rid of the role. Training quality immediately plummeted – in my workplace. I have been sorely tempted over the last few years to do  a  freedom of information request to see how many court cases they have had since removing the Training Manager role.

 

So with nearly ten years of teaching under my belt, I know that people have varied learning styles. Some learn by watching something and then having a go, some people learn by reading a manual and some people learn by a mixture of those two. Unfortunately the course seemed to be mainly the us the students sat at our machine with the trainer talking at us. So bored was I that I actually got my phone out and started to look at Facebook – discreetly. I didn’t want to be rude but I had to do something to keep myself awake as the stairs getting up to the classroom had nearly killed me. Oxygen was almost required – this was not suitable for the disabled sewist.

 

The course had been billed as getting to know your machine – I’d had mine since 13th April so rather than being terrified I had dived straight in. It became clear talking to the other 7 pupils ( excluding my mum, yes 9 people to one tutor how on earth could all of us see anything when she demonstrated at a machine?) that they had never even opened the boxes that their overlockers had come in, that possibly mum and I were too advanced for this course. I obviously wound the tutor up when after she dramatically cut all 4 threads on my overlocker and asked me to re-thread it and I had it done in less than 5 minutes. She told me off for using my machine when I was checking that it was chaining (working properly). She didn’t realise that I had threaded it and actually knew a little about what I was doing. The course went downhill from there.

 

Three people’s machines broke during the day and not once did the tutor offer any support, instead there were sarcastic comments dressed up as imparting information that certain brands of machines were basically crap and  It concerned me that someone who claimed to know so much about brands was unaware that Elna and Janome are the same company. One lady went downstairs and bought a new machine but still this woman ploughed on and didn’t recap with the lady what she had missed. The same happened when my mum’s machine broke.

 

By the end of the day I could barely maintain a civil composure, I was threading my mum’s machine to ensure that she had a working machine when we left the course – thankfully her machine was repaired there and then by the shop owners – I can’t fault them at all. I love their shop and they have always been lovely which is why I am not naming the location of the class as I wouldn’t want to damage their reputation, when this was someone who obviously comes in and works for the. The teacher was demanding yet again mum and I stand in front of a machine that we wouldn’t have a clear view of – when both of us have mobility issues which were obvious due to the mobility aids we were using. I practically hissed that I was beyond tired as was my mother and having a working machine before leaving the shop was slightly more important than looking at the backs of people’s heads. I then let her look at the back of mine as I got on with threading mum’s machine – something the tutor should have done when she was told mum was having issues seeing properly due to the light coming in through the window.

 

All I can say is thank fuck I didn’t pay full price for that class. I still feel ripped off knowing I paid £27 for it. I will be honest yes I learned some bits and pieces but not £27 worth.

 

Thursday was a complete right off as at 2am I woke up with a migraine, it was hideous. I couldn’t stop being sick and by the time Jamie found me lying in the dark at 9am I could barely speak. By 2pm I was starting to come around but I was just completely drained. However my back would not put up with me lying in bed any longer so I forced myself downstairs.

 

I was wiped out by the migraine for a good couple of days but I did get some sewing done. I managed to make a start on my floating triangle quilt, so the week wasn’t a complete right off. I have started taking pizotifen again in the hope that it prevents more migraines in the future or if not it at least reduces the intensity. I can’t cope with that again nothing stops the pain or the sickness.

 

My quilt pieces, this is as far as I have got as the rest of my time has been taken up making birthday presents,

 

 

Now all that is left to do is to join them all together in the right order!

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Could it be Postural Orthostatic Tachycardia Syndrome – PoTS?

I posted this in August last year. Due to having a crazy week (Insomnia/painsomnia)  and a dentist’s appointment today I find myself too exhausted to write a new blog post.

I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.

My own diagnosis has moved away from “just” PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn’t a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance – my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp’s and take this with you at your next appointment.

The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night’s sleep. That was back in 2006 and which I now know is reactive hypoglycemia (blog post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions. I would also on a regular basis get very lightheaded when changing from a sitting to standing position.

So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.

By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn’t exist. For more info on my experience of the Tilt Table Test please click here as I don’t want to bore you by repeating myself.

My main symptoms at the time of diagnosis were as follows

  1. palpitations
  2. feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
  3. feeling like an elephant was sat on my chest and not being able to breathe properly
  4. racing heart rate every time I changed position, even rolling over in bed.
  5. greying out, especially after eating.  (My peripheral vision greys out)
  6. Insomnia (BIG TIME)
  7. Dizziness
  8. Migraines and shockingly bad almost migraines
  9. Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
  10. Chest pain (too many times to mention I thought I was going to have a heart attack)
  11. Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
  12. Fatigue

This list probably doesn’t cover all my symptoms and unfortunately many PoTS symptoms also merge into EDS symptoms as in the gut problems and bladder problems that many of us with both conditions have. It can get very difficult to differentiate the two. For a full list of symptoms please click here.

So what can you do if you suspect you have PoTS?

I can only base this on how I went about getting my diagnosis but it is the same advice I give everyone who asks my advice. 

Firstly get hold of a decent blood pressure monitor especially one that can also take your pulse at the same time. Here is a list of blood pressure monitors that have been validated by the British Heart Foundation as accurate enough to monitor your blood pressure at home. If you can afford it get one with a memory so it records your readings so that you can’t be accused of making the numbers up. It is important to understand that blood pressure does not play an important part in getting a diagnosis. Some people with PoTS have normal blood pressure, some have low and others have high. Why you need the BP monitor is so that you can start tracking your pulse and your blood pressure. If you can’t afford a blood pressure monitor for whatever reason, a pulse oximeter ( a little device than can read your pulse by clipping onto your finger) is the next best thing and you can pick them up online from as little as £10. 

Please remember people with PoTS tend to have very cold fingers (and toes) so before using a pulse oximeter ensure your fingers are warm enough to provide an accurate reading. Before my second tilt table test (yes I was stupid enough to do it twice) I had to sit with my fingers in a bowl of warm water as the pulse ox couldn’t get a reading.

Secondly understand what PoTS is!

PoTs is a rise in your pulse / heart rate of at least 30 beats per min (bpm) or hitting 120bpm or over, within the first ten minutes of standing. In children (up to the age of 19) the rise needs to be over 40bpm. If your heart rate doesn’t increase by 30bpm or over 120bpm within the first ten minutes of standing it is unlikely to be PoTS. 

When a normal person goes from sitting to standing their pulse / heart rate will increase on average by 15-20bpm. Within a minute or so their heart rate will go back to normal. A person with PoTS could start with a baseline heart rate of 80bpm and on standing increase to at least 110bpm. Then as they continue to stand their pulse could increase further. I know on my own tilt table test my own heart rate increased to 150bpm, unfortunately I don’t know what my baseline measurement was. Usually my pulse is in the 80’s and if that was the case I certainly managed the increase of 30bpm and smashed the 120bpm threshold.

Because many people (but not all) with PoTS also seem to have low blood pressure that is why I recommend getting a monitor. It helps to see what your blood pressure and pulse are doing after specific triggers such as climbing the stairs, raising your hand above your head, eating – particularly carb loaded meals. Many people with PoTS find their symptoms are much worse after eating heavy carb meals, so it is recommended to eat high protein low carbohydrate meals which don’t cause postprandial symptoms.

Thirdly conduct your own poor man’s tilt table test.

You maybe wondering what on earth is a poor man’s tilt table test, that is ok I was left scratching my head after first hearing this term on a forum called DINET. Because none of us own our very own tilt table designed for testing people for PoTS amongst other things, we can replicate how we will respond to the actual test by completing the poor man’s tilt table test and some gp’s who are PoTS savvy will do this in their consulting room or at the very least conduct a standing test.

To conduct a poor man’s tilt table test, you need somewhere comfortable and relaxing to lie down, without interruptions and preferably away from harsh or natural light. A wall to stand against which is adjacent to the relaxing lie down area however if you don’t have this don’t worry you can still conduct the test. You also need your bp monitor / pulse ox and a handy sidekick to record your test results. Also your sidekick can rescue you should you faint whilst completing this test so please be careful and do not attempt to complete it without having someone with you. Please also ensure that the area is safe should you decide to face plant, so free from things you could hurt yourself on. Cushions or pillows on the floor can help prevent injury!

To start the test you need to lie down and relax, no talking, no interruptions for 20 minutes. If you can darken the room in anyway before starting the test do. At the end of the 20 minutes with as little movement as possible take your blood pressure and pulse readings. These are your base line readings and what you will use to compare against the reading you get during the test.

Once you have your baseline readings stand as quickly as you can placing your back against the wall. The wall just helps prevent you from moving, people with PoTS tend to be natural fidgets because we either faint or feel like we are going to faint. Moving keeps the blood flowing, we don’t want you to do that whilst you are standing up as it may mess up the results. If you don’t have a wall to prop yourself up against try and keep your legs as still as possible.

Then at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 minutes take readings of your blood pressure and pulse or get your trusty assistant to do it. After the ten minute reading has been taken, sit down get your legs elevated and have a drink of water. You may notice that your feet / legs have gone a nice shade of red or purple. Don’t be alarmed this is called blood pooling and is very common with PoTs.

Now take a look at your readings if it shows an increase of 30+ bpm / 120 bpm this is positive for PoTS. Do not despair if it doesn’t show PoTS one negative poor man’s tilt table test does not mean it’s not PoTS, it may just mean you weren’t particularly symptomatic that day. Try to complete the test on a day when your symptoms are more evident.

Other things that might show during a poor man’s tilt table test are things like orthostatic intolerance ( your blood pressure goes below 90/60 on standing), you may have also fainted, if so I am sorry. The blood pressure readings could also reveal if you suffer from hyper-PoTS, which is where you have high blood pressure and PoTS. This needs to be treated differently to “normal” PoTS as most doctors will avoid giving you medication that will increase your blood pressure.

If you can’t for whatever reason do the poor man’s tilt table test you could perhaps try what is known as the standing test. Instead of lying down you sit down for 5 to 10 minutes to get your baseline pulse and blood pressure readings and then stand for as long as you can. Taking your readings at the same intervals as the poor mans test. This can also show PoTS. Remember PoTS stands for postural (position) orthostatic, tachycardia (fast heart rate / pulse), Syndrome (collection of symptoms and no two patients are alike).

What to do next?

Print off the gp’s guide from http://www.potsuk.org/gp_guide and book an appointment with your gp or a doctor at the practice who has been the most supportive. Sometimes these aren’t necessarily the same. Whilst waiting for your appointment take a look (if you are in the UK) at the Doctors list on the same website. This will give you an idea of who you can ask to be referred to, not all cardiologists are knowledgeable in the area of PoTS so it makes sense to see an expert, rather than someone who will give you the run around. For international readers DINET also has a Physician’s list.

If you have a disappointing gp visit and they still will not listen to you even when provided with your own test results and the gp guide, do not give up. Try every doctor at the practice if you have to and if that doesn’t work contact the practice manager. If you get no joy after all of that try reaching out to one of the many UK facebook PoTS groups. They have members all over the country and they maybe able to help you find a new gp practice with more sympathetic gp’s who are aware of the condition. 

If you have a disappointing consultants visit because despite your request of being sent to a specific doctor who is knowledgeable about the condition and you didn’t get to see one, you have a right to ask for a second opinion and ask once again to see one of the doctors named on the potsuk.org website.

You will get there in the end!

Most doctors will not confirm a diagnosis of PoTS without conducting a Tilt Table Test, ECG and possibly 24 hour blood pressure / heart monitoring. I was diagnosed on my tilt table results alone possibly because from 2007-2011 I had so many other investigations conducted they decided nothing more was needed.

The good news is that many people recover from PoTS especially if they have primary PoTS. Primary PoTS is usually caused by pregnancy, a virus, trauma or prolonged bed rest. Astronauts suffer from PoTS when returning to the Earth’s atmosphere and when their bodies re-adjust to the Earth’s gravitational pull their symptoms disappear.

Teenagers who develop PoTS also have a high chance of growing out of it. Researchers believe that teenagers develop PoTS due to the hormonal changes and growth spurts they are subjected to. Patients like these tend to grow out of their symptoms by their mid- twenties.

Patients with secondary PoTS, so PoTS that has happened due to a primary condition such as cancer, autoimmune diseases (like M.S, Lupus, Sjogrens), Ehlers Danlos Syndrome can also look forward to on the whole having the condition managed through medication and lifestyle changes (exercise, increased fluids, salt, adequate rest).

However I would be remiss if I didn’t state that there are patients like me that have refractory PoTS (it doesn’t respond to medication) and go onto develop more issues relating to our autonomic nervous system. We are the minority though not the majority. I don’t want to scare anyone who has just started on this journey I just want to be truthful.

My symptoms now are pretty much the same as when I first started on this journey with PoTS / Dysautonomia. I still have Ptosis on and off which no one has ever been able to explain. I still have issues with my breathing, fatigue, syncope and pre-syncope. A good day means that my heart isn’t continually feeling like it is fighting out of my chest on every change in posture. A bad day means not being able to sit up in bed without feeling faint, my heart rate not dropping below 100bpm even at rest. 

With my combined conditions each day is very much different with a new set of symptoms to overcome. It is exhausting, it makes me angry, it makes me sad and quite a lot of the time it makes me laugh because my body is just so screwed up!

One last thing…..if you are diagnosed with any type of tachycardia, including PoTS and you hold a driving licence you must inform the DVLA. You can do that via this Link. You will also need to contact your car insurance providers.

Another great source of information is Stars another charity which helps people suffering with a variety of conditions including PoTS.

Exhausted.com

Exhausted is an overused word however it is the only way I can describe the state I find myself in. Yesterday (Tuesday) was my trip down to Plymouth to see my new consultant, (after I got rid of the one who accused me of spending too much time on the Internet looking up syndromes to have) and catch up with family and an old school friend. 

The appointment went really well however due to two road traffic accidents in Plymouth which caused complete gridlock in the city, the rest of my plans went awry. The traffic was so bad it actually took us an hour to get out of the multi storey car park at the hospital. With my husbands blood pressure slowly climbing and me rapidly fading, I had visions of the red cross coming to our aid as I couldn’t see how on earth we were ever going to get home. It took us over two hours to get back to my parents house, a journey normally of 20 minutes to pick up my medication and various other bits and bobs that I had left there before setting off for my appointment. We then had another hours travelling time to complete the journey from Plymouth to Exmouth. All in all yesterday I spent over 4 hours in the car. This catastrophe was not in our plans and being in the car so long has caused my legs to refuse to work properly and climbing stairs is now an endurance sport which has to be completed by shuffling up the stairs on my bum. What a glamorous life I lead!

So my blog post this week will not be a long one, when I say that it just depends how much I can write before crashing completely. I have got up very early to compose this post because the worry of not having it completed was keeping me awake. I do like to have something to worry about.

As usual I suffered very badly with pre hospital visit jitters which meant a pretty much sleepless night Monday into Tuesday. I woke up at 02:30am and didn’t get back to bed until gone 9pm, I have woken up at 4am this morning. This is just begging for a Meniere’s attack to happen, which I can already feel building up. I had been told by numerous people that the doctor I was going to meet was lovely but in the back of my mind there was a niggling doubt that I could be the one patient that he wasn’t nice to. You see my neurologist I saw many years ago was treated like a god amongst the Myasthenia Gravis patients, not a bad word was said about him. The problem was that he was a consummate performer who was very nice to your face but had a nasty habit of writing utter shite about you in his notes. The neurologist treated me very badly and I highly suspect that it was him that diagnosed me with somatiform disorder. So I guess you could say we (both hubby and I) have trust issues when it comes to doctors.

When the doctor called my name in the waiting room, I had my back to him due to the lack of space provided for wheelchair users (that is a rant for another day that hospitals seem to be so unfriendly towards wheelchairs). When I turned around to face him, there was a look of shock on his face. He then said something like “you need no introduction, I can see the family resemblance”. This Dr treats my sister also and due to that has also met my mum. People say that we all really look-alike but I just don’t see it. Yes we look like each other but it’s not (to me) like we are clones! So that was nice as he hadn’t seen my sister for a few weeks but he recognised me. My last consultant also saw my sister but never actually acknowledged the link between us despite me referencing her on more than one occasion simply because we have a lot of the same symptoms.

The new doctor was really friendly and open to ideas. In fact he brought up stuff that I had on my list of the most important things to discuss with him. My list read as follows

1. Mast cell activation disorder

2. Fluid intake

3. Stomach / bowel problems / adhesion’s

4. Alice in Wonderland syndrome or Todd’s syndrome as it is also known. This would be brought up if I was feeling brave enough as I have never mentioned it to any doctor before in case they thought I was nuts.

As it happened one of the first things we talked about was the Alice in wonderland syndrome. This was due to the fact he brought up the Myasthenia Gravis / Ptosis / Nystagmus and breathing issues. He doesn’t think I have MG, he thinks my Ptosis (droopy eyelid –You can see a picture of it here) is being caused by hypoperfusion (so not enough blood flow to my brain, essentially low blood pressure in my head). I brought up the fact that when I have Ptosis or MG symptoms my blood pressure is normal but he quite rightly pointed out that it doesn’t mean my blood pressure is normal locally (as in my head the pressure is low). I can’t argue it makes sense, mestinon or pyridostigmine bromide as it is also known raises blood pressure, if the blood pressure is low in my head the mestinon would have the effect of raising it. I did mention about the ice pack test also being positive and that is an indication of a problem at the neuromuscular junction. He said he felt it was possible that both my sister and I had issues with the ganglionic receptors in our brains. As I told him I roughly understand that but much more and it goes over my head.

As we were talking about MG symptoms I brought up the nightmare of 2013, when I had all the constant nystagmus and the weird visual symptoms that lead me to believe I have Alice in Wonderland syndrome. He agreed with me that it sounded like I did indeed have this, what shocked me more was the fact that he had heard of it and didn’t treat me as if I was a complete loon, when I was describing watching birds flying across the sky only for them to rewind and do it again.

He also believed I could be suffering from another weird syndrome that causes sudden desaturation (not enough oxygen in your blood). He did tell me what it was but its name was far too long for me to remember. He told me at the start of the appointment that he had only had a quick look at my notes however it soon became clear that the poor man had taken an in-depth look at them and had already come up with a treatment plan.

Due to my exhaustion I can’t remember the exact flow of the conversation and what we talked about next and in what order. So I will be brief and explain what I can remember.

My excessive fluid intake would come under psychogenic polydipsia, as I do not have diabetes insipidus. He thinks that title is harsh because I have had excessive thirst ever since I was a baby and I could in no way be able to form a habit of drinking too much from that age. So there is something wrong with the hypothalamus part of my brain that controls thirst but we will probably never know what.

He believes I have Mast Cell Activation disorder just from reading my notes and looking at the strange reactions I have had with many if them. The closest I have come to full-blown anaphylaxis was when I had CT contrast dye injected. It’s an experience I don’t want to repeat. I was also able to show him the blotches that had come out on my neck that very morning, despite not eating / drinking or doing anything different. Due to the Mast Cell Activation Disorder or MCAD for short he wants to change my Betahistine that I take for Meniere’s disease to Cinnarizine (stugeron). As MACD is caused by histamine the Betahistine will not be helping me and by strange coincidence since taking it I have noticed that my skin has become much more reactive. He isn’t convinced that I have Meniere’s disease, I am, so he is requesting a copy of my audiology notes as they hadn’t been included in the file that was sent to him.

He thinks a lot of my stomach / bowel / adhesion issues are being triggered by MCAD. If we could get the MCAD under control it maybe that we can get those issues under control. The adhesion pain has been quite bad since the 29th November. I am having sudden onset of really sharp pains which take my breath away and leave me doubled over. As fast as they come on they go again.

The weirdest revelation of all was that he doesn’t think I have PoTs……….. He believes that my problems stem from my blood pressure being all over the place, my heart (or brain you could say) is responding by beating faster in an attempt to keep my blood pressure elevated. He wants to do another tilt table test, I have politely declined for the moment just due to the fact how ill I was after the last one.

He was incredulous that I had never had an echo cardiogram ( a bit like an ultrasound for your heart) to check that it was actually working ok and that I don’t have  a mitral valve prolapse. This should be a standard test that is carried out of everyone who has been diagnosed with EDS. For some reason my last consultant didn’t think so and I can’t seem to get my gp to move forward with this probably because I have so many problems it just gets overlooked. So my new doctor is going to ask that I get one done. If I don’t get it he will arrange for it to happen in Plymouth.

So due to his theory on it being my blood pressure causing the tachycardia he has started me back on Midodrine at 2.5mg once a day for a few days to then increase it to twice a day, then three times a day. Then I am to slowly get myself up to 5mg three times a day. We all hope that by slowly titrating it I won’t react as badly to it as I did the last time when I ended up with awful bladder problems and adhesion pain. 

When we talked about the bladder problems, I brought up the possibility of Fowler’s Syndrome. When I brought this up with my last consultant this was when he accused me of looking things up on the Internet, so I could have more syndromes. This doctor knowing my sisters history, that she has a sacral nerve stimulator so that she can use her bladder, agreed with me. He told me because not many doctors had heard of Fowler’s Syndrome this was perhaps why I had encountered such hostility. The Fowler’s syndrome would cause the acute urinary retention and the problems I have had when in hospital or at home when they have fitted a catheter and my bladder has still refused to empty due to the fact the valve at the neck of the bladder had clamped around the catheter. Again he couldn’t understand why I had been taught to self catheterise and hadn’t had the bladder issues fully investigated. I explained to him that when I raise this issue with my doctors I get told I have already had lots of tests done. It is infuriating because the doctors seem to blame me for the wrong tests being done, so now nothing gets investigated and it is only the symptoms that get treated.

I have just looked back at the amount of stuff I have written after claiming I wouldn’t write much. I don’t know how I am putting this together as I am so tired I can barely string a sentence together let alone see the screen.

Anyway back to the Midodrine, once I can tolerate this medication at the full dose of 5mg three times a day, the doctor wants me to then slowly add in Ivabradine. I have tried this drug before and it was wonderful at stopping the tachycardia but my blood pressure dropped very low. This is what my new doctor has picked up on, where as the old consultant was happy to just say “you obviously need a fast heart rate to keep your blood pressure elevated”. This doctor wants to get to the bottom of this and raise my blood pressure and then drop my heart rate. It was actually something (on my extended list) that I wanted to suggest. I have to say I was  in shock when it appeared both the doctor and I were on the same page. That has never happened.

I can’t really remember much more from the appointment and I will be honest I am starting to fade a bit here. He wants to see my print outs from my tilt table tests to see what my blood pressure and heart rate did. My old consultant handily forgot to include them in my notes. My new consultant ordered a load of blood tests, one for my testosterone levels (due to my facial hair), a repeat of the prolactin to see what that is doing and countless others, I was robbed of 4 vials worth of my blood. 

The assistant that took my blood wasn’t great, she had a constant sniff (that always makes me feel sick and is a pet hate of mine), she managed to jab the first attempt straight into a nerve and then had the gall to shout at me when I moved. She tried to tell me she hadn’t hurt me, I asked her “why would I shout out and jump if you hadn’t hurt me?” I was furious. I have never moved during a blood test, I have had 100’s of them, I have had 3 doctors jabbing me in the feet and both arms at once to get blood. So I don’t jump about when people are trying to get blood from me. My point was proved when she then got a vein on the back of my hand and I continued chatting with her whilst she got my blood. It didn’t help that I was tired and dehydrated when she was getting my blood but to try to tell me she hadn’t done anything to make me jump was ludicrous. My husband was getting quite tense at this point as he has seen me having blood taken on many occasions and has never seen me react like that.

Despite the horrible blood taking episode I would describe myself as slightly elated after that appointment. This doctor wants regular email updates on how I am doing……I know what doctor does that? My last doctor gave you ten minutes of his time and you didn’t see him again for 6 months if you were lucky and they remembered to book you an appointment. I had this doctor for 80 minutes.

My husband informed me last night as we were going to bed, I didn’t let the poor man finish a sentence without interrupting him. He said I was gabbling away like a loon, like I always do when I am nervous. Hubby is happy, he said he feels for the first time in a very long time that we are starting to get somewhere. As I told the doctor yesterday, I know that there is no magic wand, I know that there is no cure, I would just like to feel better and be taken seriously.

 

Could it be Postural Orthostatic Tachycardia Syndrome – PoTS?

 

I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.

My own diagnosis has moved away from “just” PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn’t a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance – my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp’s and take this with you at your next appointment.

The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night’s sleep. That was back in 2006 and which I now know is reactive hypoglycemia (Blog Post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions.I would also on a regular basis get very lightheaded when changing from a sitting to standing position.

So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.

By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn’t exist. For more info on my experience of the Tilt Table Test please click Here as I don’t want to bore you by repeating myself.

My main symptoms at the time of diagnosis were as follows

  1. palpitations
  2. feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
  3. feeling like an elephant was sat on my chest and not being able to breathe properly
  4. racing heart rate every time I changed position, even rolling over in bed.
  5. greying out, especially after eating.  (My peripheral vision greys out)
  6. Insomnia (BIG TIME)
  7. Dizziness
  8. Migraines and shockingly bad almost migraines
  9. Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
  10. Chest pain (too many times to mention I thought I was going to have a heart attack)
  11. Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
  12. Fatigue
This list probably doesn’t cover all my symptoms and unfortunately many PoTS symptoms also merge into EDS symptoms as in the gut problems and bladder problems that many of us with both conditions have. It can get very difficult to differentiate the two. For a full list of symptoms please click here.
 
So what can you do if you suspect you have PoTS?
 
I can only base this on how I went about getting my diagnosis but it is the same advice I give everyone who asks my advice. 
 
Firstly get hold of a decent blood pressure monitor especially one that can also take your pulse at the same time. Here is a list of blood pressure monitors that have been validated by the British Heart Foundation as accurate enough to monitor your blood pressure at home. If you can afford it get one with a memory so it records your readings so that you can’t be accused of making the numbers up. It is important to understand that blood pressure does not play an important part in getting a diagnosis. Some people with PoTS have normal blood pressure, some have low and others have high. Why you need the BP monitor is so that you can start tracking your pulse and your blood pressure. If you can’t afford a blood pressure monitor for whatever reason, a pulse oximeter ( a little device than can read your pulse by clipping onto your finger) is the next best thing and you can pick them up online from as little as £10. 
 
Please remember people with PoTS tend to have very cold fingers (and toes) so before using a pulse oximeter ensure your fingers are warm enough to provide an accurate reading. Before my second tilt table test (yes I was stupid enough to do it twice) I had to sit with my fingers in a bowl of warm water as the pulse ox couldn’t get a reading.
 
Secondly understand what PoTS is!
 
PoTs is a rise in your pulse / heart rate of at least 30 beats per min (bpm) or hitting 120bpm or over, within the first ten minutes of standing. In children (up to the age of 19) the rise needs to be over 40bpm. If your heart rate doesn’t increase by 30bpm or over 120bpm within the first ten minutes of standing it is unlikely to be PoTS. 
 
When a normal person goes from sitting to standing their pulse / heart rate will increase on average by 15-20bpm. Within a minute or so their heart rate will go back to normal. A person with PoTS could start with a baseline heart rate of 80bpm and on standing increase to at least 110bpm. Then as they continue to stand their pulse could increase further. I know on my own tilt table test my own heart rate increased to 150bpm, unfortunately I don’t know what my baseline measurement was. Usually my pulse is in the 80’s and if that was the case I certainly managed the increase of 30bpm and smashed the 120bpm threshold.
 
Because many people (but not all) with PoTS also seem to have low blood pressure that is why I recommend getting a monitor. It helps to see what your blood pressure and pulse are doing after specific triggers such as climbing the stairs, raising your hand above your head, eating – particularly carb loaded meals. Many people with PoTS find their symptoms are much worse after eating heavy carb meals, so it is recommended to eat high protein low carbohydrate meals which don’t cause postprandial symptoms.
 
Thirdly conduct your own poor man’s tilt table test.
 
You maybe wondering what on earth is a poor man’s tilt table test, that is ok I was left scratching my head after first hearing this term on a forum called DINET. Because none of us own our very own tilt table designed for testing people for PoTS amongst other things, we can replicate how we will respond to the actual test by completing the poor man’s tilt table test and some gp’s who are PoTS savvy will do this in their consulting room or at the very least conduct a standing test.
 
To conduct a poor man’s tilt table test, you need somewhere comfortable and relaxing to lie down, without interruptions and preferably away from harsh or natural light. A wall to stand against which is adjacent to the relaxing lie down area however if you don’t have this don’t worry you can still conduct the test. You also need your bp monitor / pulse ox and a handy sidekick to record your test results. Also your sidekick can rescue you should you faint whilst completing this test so please be careful and do not attempt to complete it without having someone with you. Please also ensure that the area is safe should you decide to face plant, so free from things you could hurt yourself on. Cushions or pillows on the floor can help prevent injury!
 
To start the test you need to lie down and relax, no talking, no interruptions for 20 minutes. If you can darken the room in anyway before starting the test do. At the end of the 20 minutes with as little movement as possible take your blood pressure and pulse readings. These are your base line readings and what you will use to compare against the reading you get during the test.
 
Once you have your baseline readings stand as quickly as you can placing your back against the wall. The wall just helps prevent you from moving, people with PoTS tend to be natural fidgets because we either faint or feel like we are going to faint. Moving keeps the blood flowing, we don’t want you to do that whilst you are standing up as it may mess up the results. If you don’t have a wall to prop yourself up against try and keep your legs as still as possible.
 
Then at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 minutes take readings of your blood pressure and pulse or get your trusty assistant to do it. After the ten minute reading has been taken, sit down get your legs elevated and have a drink of water. You may notice that your feet / legs have gone a nice shade of red or purple. Don’t be alarmed this is called blood pooling and is very common with PoTs.
 
Now take a look at your readings if it shows an increase of 30+ bpm / 120 bpm this is positive for PoTS. Do not despair if it doesn’t show PoTS one negative poor man’s tilt table test does not mean it’s not PoTS, it may just mean you weren’t particularly symptomatic that day. Try to complete the test on a day when your symptoms are more evident.
 
Other things that might show during a poor man’s tilt table test are things like orthostatic intolerance ( your blood pressure goes below 90/60 on standing), you may have also fainted, if so I am sorry. The blood pressure readings could also reveal if you suffer from hyper-PoTS, which is where you have high blood pressure and PoTS. This needs to be treated differently to “normal” PoTS as most doctors will avoid giving you medication that will increase your blood pressure.
 
If you can’t for whatever reason do the poor man’s tilt table test you could perhaps try what is known as the standing test. Instead of lying down you sit down for 5 to 10 minutes to get your baseline pulse and blood pressure readings and then stand for as long as you can. Taking your readings at the same intervals as the poor mans test. This can also show PoTS. Remember PoTS stands for postural (position) orthostatic, tachycardia (fast heart rate / pulse), Syndrome (collection of symptoms and no two patients are alike).
 
What to do next?
 
Print off the gp’s guide from http://www.potsuk.org/gp_guide and book an appointment with your gp or a doctor at the practice who has been the most supportive. Sometimes these aren’t necessarily the same. Whilst waiting for your appointment take a look (if you are in the UK) at the Doctors list on the same website. This will give you an idea of who you can ask to be referred to, not all cardiologists are knowledgeable in the area of PoTS so it makes sense to see an expert, rather than someone who will give you the run around. For international readers DINET also has a Physician’s list.
 
If you have a disappointing gp visit and they still will not listen to you even when provided with your own test results and the gp guide, do not give up. Try every doctor at the practice if you have to and if that doesn’t work contact the practice manager. If you get no joy after all of that try reaching out to one of the many UK facebook PoTS groups. They have members all over the country and they maybe able to help you find a new gp practice with more sympathetic gp’s who are aware of the condition. 
 
If you have a disappointing consultants visit because despite your request of being sent to a specific doctor who is knowledgeable about the condition and you didn’t get to see one, you have a right to ask for a second opinion and ask once again to see one of the doctors named on the potsuk.org website.
 
You will get there in the end!
 
Most doctors will not confirm a diagnosis of PoTS without conducting a Tilt Table Test, ECG and possibly 24 hour blood pressure / heart monitoring. I was diagnosed on my tilt table results alone possibly because from 2007-2011 I had so many other investigations conducted they decided nothing more was needed.
 
The good news is that many people recover from PoTS especially if they have primary PoTS. Primary PoTS is usually caused by pregnancy, a virus, trauma or prolonged bed rest. Astronauts suffer from PoTS when returning to the Earth’s atmosphere and when their bodies re-adjust to the Earth’s gravitational pull their symptoms disappear.
 
Teenagers who develop PoTS also have a high chance of growing out of it. Researchers believe that teenagers develop PoTS due to the hormonal changes and growth spurts they are subjected to. Patients like these tend to grow out of their symptoms by their mid- twenties.
 
Patients with secondary PoTS, so PoTS that has happened due to a primary condition such as cancer, autoimmune diseases (like M.S, Lupus, Sjogrens), Ehlers Danlos Syndrome can also look forward to on the whole having the condition managed through medication and lifestyle changes (exercise, increased fluids, salt, adequate rest).
 
However I would be remiss if I didn’t state that there are patients like me that have refractory PoTS (it doesn’t respond to medication) and go onto develop more issues relating to our autonomic nervous system. We are the minority though not the majority. I don’t want to scare anyone who has just started on this journey I just want to be truthful.
 
My symptoms now are pretty much the same as when I first started on this journey with PoTS / Dysautonomia. I still have Ptosis on and off which no one has ever been able to explain. I still have issues with my breathing, fatigue, syncope and pre-syncope. A good day means that my heart isn’t continually feeling like it is fighting out of my chest on every change in posture. A bad day means not being able to sit up in bed without feeling faint, my heart rate not dropping below 100bpm even at rest. 
 
With my combined conditions each day is very much different with a new set of symptoms to overcome. It is exhausting, it makes me angry, it makes me sad and quite a lot of the time it makes me laugh because my body is just so screwed up!
 
One last thing…..if you are diagnosed with any type of tachycardia, including PoTS and you hold a driving licence you must inform the DVLA. You can do that via this Link. You will also need to contact your car insurance providers.
Another great source of information is Stars another charity that helps people with a variety of conditions including PoTS.
 
 
 
 
 

 

“Can you hear me?”

I am getting increasingly frustrated with not being heard.
 
I have a good doctor but there is one symptom of mine that whenever I bring it up is not acknowledged or I feel is disbelieved. Everything else I discuss with him is accepted as part of my condition yet this simple seven letter word is just left hanging in space and I am fed up with going over the same old ground in an effort to be heard and acknowledged.
 
This symptom isn’t anything crazy it is well documented as part of Ehlers Danlos Syndrome and Dysautonomia but it is dismissed out of hand whenever I dare raise the subject. All I am trying to discuss is the bone crushing level of fatigue I suffer from after leaving the house for medical appointments or for any other reason.
 
On leaving the house I am hit with fatigue, its been going on for seven years. A medical appointment can leave me in bed for hours if I am lucky and most of the time days. It’s not just the fatigue that is an issue but also it makes all my symptoms worse. I have increased pain due to the Ehlers Danlos Syndrome and the Dysautonomia makes my autonomic nervous system go screwy. A simple 20 minute appointment can leaving me feeling like I have been run over by a car and I simply don’t bounce back.
 
Most medical professionals that I try to discuss this with either pretend that they haven’t heard me by changing the subject or make me feel like I am exaggerating my symptoms. Let me tell you now I am not making this stuff up! If I could go out everyday I would, I don’t choose to be a prisoner in my own home, my body is making me that. I don’t mind suffering the consequences of the punishment my body will dole out if I am having a good time however medical appointments are not on my list of fun things to do. I would rather spend my energy actually having a life and doing normal things. The only way I can do this is to stick to a strict routine in a controlled environment where my senses are not over stimulated and my frayed autonomic nervous system doesn’t feel like it’s under attack.
 
Also I find that doctors do not calculate into the equation, travelling times to appointments. My doctor wants me to go to the next town to have physiotherapy on the NHS. What he has failed to appreciate is that on a good day that is a 20 minute journey each way with a 30 minute appointment. The physiotherapist will want me to attend once or twice a week. That’s lovely but my body disagrees. If I go just once a week it will take me the rest of the week to recover, going twice a week means my body doesn’t recover and it sends me on a downwards spiral where I become so ill I can’t get out of bed for months. The doctor and the physiotherapist can not understand my sudden deterioration, I then have to end the physiotherapy because I am too sick to attend.
 
How do I know this will happen? Because I have done this before. I tried to play the game and attend the twice weekly physiotherapy sessions. I ended up in a worse condition than I was before I attended. It’s not just the travelling and the appointment that is the issue. If you end up with a physiotherapist that can’t get their heads around the autonomic issues and demands you increase your walking by 10% each week you are on a hiding to nothing. It doesn’t matter how much you tell them about your condition they just don’t hear you. It begins to feel like they think you like using a wheelchair etc. You aren’t then just using energy travelling and attending the appointment you are wasting energy on a person who refuses to listen to you. If they can’t understand the danger with getting someone who has orthostatic intolerance or faints without warning  to increase the length of time they spend walking then what’s the point? I am thoroughly sick of it.
 
When I explained to my doctor that the physiotherapy was making me worse I felt ignored. I was told that I was just going through a rough patch and once through it I could start again. I never emerged from that rough patch and my conditions steadily got worse.
 
Dont get me wrong I like my doctor there are many things that we see eye to eye on and he is my go to guy. He just fails to appreciate the havoc my body creates when made to leave my home. He didn’t get it when I had to have 6 vitamin B12 injections over two weeks, that this would put me in bed for days. I asked if the District Nurse could come and do them I was told that as I was  not strictly housebound that I would have to go to the surgery. I understand that the District Nurses are extremely busy and have many patients to see but this meant for the whole two weeks I rarely left my bed. The nurses I saw at the surgery could see with each session my health was deteriorating and were furious. I couldn’t understand either why I was not being allowed to self inject when I already inject octreotide (a far more dangerous drug that vitamin B12) everyday. It made absolutely no sense. Unfortunately its something my doctor didn’t see so obviously its just a figment of my imagination.It’s incredibly frustrating.
 
This situation with being disbelieved has happened again this week. I needed to ring my gp about increasing my slow release morphine on the days when my back is bad. That was no issue at all. He then asked me how I was, I explained I had seen my neurosurgeon, I read him the MRI report and then told him I had been in bed ever since the appointment (at this point it had been 24 hours and for a lot of those I had slept). I swear to god I could hear his eyes rolling! 
 
I think some of the problem is that when I see someone and it doesn’t matter how ill I am (unless it’s a situation like in June where the temporary catheter was blocked and my bladder was in spasm) I will be bright and breezy because I am genuinely happy to be interacting with another human being other than my husband. I can go weeks without seeing anyone but him and although obviously I love him very much, it’s nice to have some social interaction. The fact that as soon as the interaction finishes I go back to bed or back to sleep is something they don’t see. I really wish they did. 
 
Sometimes I wish I could pull off a dying swan act just so they would appreciate how sick I am but I just can’t, it’s not me. Years of dealing with colleagues and the general public has ingrained in me a “happy face” and a pleasant demeanor when dealing with people. Very few people see the real me, the days when I can’t cope with all the crap that’s being thrown my way and I just want to cry all day everyday. I know through my immense dealings with the medical profession for them to see me like that would mean they would blame it on depression and then it would be an uphill struggle to get any symptom acknowledged as it would all be blamed on that.
 
I am dreading starting my spinal rehabilitation physiotherapy due to the fact I don’t know if the physiotherapist is going to believe me when I tell her I can’t come every week. However at least this time the journey is only 5-10 minutes away depending on whether we get stuck behind a tractor or not. Plus this time I am paying for the treatment myself which means I get a bigger say. I am going to be printing off and taking with me medical papers on Dysautonomia and Ehlers Danlos syndrome for her to read. I hope she does otherwise I will be saying to myself yet again “can you hear me?” when the subject of my fatigue is ignored.

Internet Forums / Facebook groups- where to get help when you’re new to the world of chronic illness

Everyone needs support and questions answered by those in the position to give the information especially when starting out on your journey. Joining a supportive group is key to navigating around this strange new world.

I have been part of the Internet forum / facebook group (secret / closed and open) community for quite some time now. When I first became ill and was searching for answers they became my lifeline and a mine of useful information, not a day went by without me logging onto one of these sites.

I have seen the best and worst in these kinds of groups, so for the last year or so I have stepped away from many of them. Too many “secret” groups on facebook have ended up as peoples personal power trips banning members who dare to question their authority or  they have just turned into hate campaigns against individuals.

 Stepping away from the Forums outside the world of facebook groups was for a variety of reasons mainly because I just couldn’t handle what was going on with my health and by ignoring the forums, I thought I could ignore what was going on with me. The same reason why I ignored my blog for so long. You have to admire my logic.

Its always very difficult when you are dealing with a situation when the reader is free to interpret your comment / question via the written word only. So much of what we interpret when speaking to another human face to face relies on body language and the tone of someone’s voice. In the cyber world one missing word or misplaced capital letter can lead to a whole heap of trouble! Its trouble of the kind that I would rather avoid when I am dealing with my own problems and just looking for some support / advice.

I will be honest I’ve been kicked out of three secret facebook groups. I would love to tell you some lurid tale of why I was kicked out but I actually don’t know the reason why other than the fact I was facebook friends with some individuals that the administrators on these groups did not like.  I found it quite hilarious at the time considering that facebook is supposed to be for users over the age of 13, however the admins of these groups seemed to treat it like the school playground, which is very sad when you consider the aim when creating these groups is to share information and support each other.

I would like to say that I am still a member of several private / closed groups. These are well run and not dominated by one individual. They have been created with the sole aim of helping and supporting the members of the group.

There is a world of difference between a well run Internet forum and a secret facebook group. Internet forums aren’t secret for a start, there’s no special status conferred on its members. Internet forums are not “invitation only”. Internet forums also usually have active administrators who step in at the first sign of trouble eg Medical advice being given by someone who is not a Dr, bullying, religion or politics. Believe me nothing gets people stirred up on an American Forum than mentioning the Affordable Care Act or telling them that you have no religious beliefs! Ive never done that but I have enjoyed watching the drama unfold. When you don’t get out much you don’t get that kind of drama that is normally confined to social situations or the workplace!

 Facebook secret groups don’t seem to apply the same standards as the Internet forums ( well not the ones I’ve had the pleasure of being kicked out from). I’ve watched far too many facebook administrators actually get involved in the mud slinging and then kick the victim out! Entertaining as it can sometimes be it does leave me feeling a little sad, we have so many things against us already and then we start turning on each other. It just doesn’t make any sense.

Internet forums don’t suffer from the same issues that the  facebook groups (all groups not just secret ones) tend to succumb to. With Internet Forums there are a larger number of members, so no one person can dominate the group and turn it into their own personal whinge fest. Many of the facebook groups I have stepped away from were dominated by two or three people, who seemed to decide if your question was worthy enough to be answered. I found when posting comments that if I didn’t have their approval then my question would be ignored. If it happened just the once or possibly twice I could accept that no one in the group had the answer, when it happens on every question you post you tend to see a pattern. Such was the strength of these individuals if you didn’t have a place in the inner clique you definitely felt the cold!

My experience with Internet forums has been completely different, people bend over backwards to help you. Even if someone doesn’t have the answer to your question they will reply to your post, sympathise and suggest someone who might know the answer, who you can directly message.

On Internet forums I’ve had a mostly positive experience, yes I’ve seen infighting amongst members, there always seems to be someone who considers themselves the Alpha of the pack but I’ve also seen how quickly the dedicated teams of administrators step in to squash that kind of behaviour.

Also I like the way that you can report bad behaviour to the administrators of the Internet forum totally anonymously and feel confident that unlike facebook, the Admins won’t tell the person who complained and then hold a long conversation about you in secret because they are personal friends. This is due to the sheer size of the forum membership, whereas on Facebook you are normally invited into these groups by your facebook friends. A successful administrator needs to be able to step back and see both sides without being caught up in friendships  / loyalties.

Due to the sheer volume of members the Internet forum doesn’t seem to become engaged in  the “who is the sickest ?” game, I’ve seen this played out on facebook so many times.  When did being ill become a competition? Its not a competition I want to participate in. Everyone who suffers from any disabling condition be it visible or invisible doesn’t then need to engage in this strange competition that seems to happen on these pages. It seems to be for some individuals a badge of honour to be the sickest, the one having the hardest time, one can never post without being reminded of how much worse it was for them due to a, b, or c. Believe me I know some people have a terrible time of it but since when have we been judged on how ill we are? What is it about facebook that seems to bring this out in people?

Some of you may recognise what I am talking about in the last paragraph,  some of you may think I’m a wicked, unsympathetic person. Hang around these groups for long enough and you will see exactly what I mean.

Due to the competition aspect that has evolved in some of these facebook groups other groups have sprung up, most of them containing the word Positive in their names. Having lurked on several of them ( I like lurking) it now seems there is a competition about who can be the most positive about their condition. Strictly no whining allowed on these pages. So what do you do when you are having a really shitty day and need to reach out to people? Sometimes positive messages just don’t cut the mustard.

Does anyone think like me that things are getting just a little bit crazy? Aren’t these pages set up for fellow sufferers who want help, support and advice? Why do facebook groups ( the groups that I have been involved in) seem to forget that?

Now don’t get me wrong not all  facebook groups are like this, some are very well run, particularly those that are officially linked to charities. These tend to have clear messages pinned to their page to remind members what is and what isn’t acceptable behaviour. Their administrators also seem to be much more responsible and proactive, they step in when things are getting heated. They will shut down conversations if things are getting out of hand and will warn members privately that their conduct is falling below the required standards of the community. They act in the same responsible manner that the Internet forum does.

For someone new to an illness a good facebook page / Internet forum can be a life line. It reassures you that you aren’t alone, points you in the direction of good medical information and does not hold some members in higher esteem than others. Everyone is equal on these sites and everyone is there to learn together. No question is too stupid / silly and the members of the community are there to help you.

Two Internet forums that I hold in particularly high esteem are;

http://neurotalk.psychcentral.com/
this covers a whole host of illnesses / conditions, too many to mention individually and has a very good Myasthenia Gravis Forum. Without this forum  ( it was the very first one I joined) I would have been completely lost. This is the only Internet forum I use for Myasthenia Gravis. It was my mum who found this forum.

http://www.dinet.org/
Not only is this a wonderful forum but it has a wealth of information available for people who suffer with Dysautonomia ( Pots, OI and EDS) . It prides itself on keeping its members up to date with the latest medical research papers. This is the only Internet forum I use for dysautonomia.

Unfortunately I can’t provide you with any links to Facebook groups as many of them are closed groups and you need to be added by a member of the group.
However I can provide you with the home page of Pots Pals UK which also has a facebook page.

http://potspalsuk.weebly.com/
This site provides good information for people with POTS in the UK and by joining (free) you can then access the facebook group should you wish to.

www.ehlers-danlos.org
A great organisation to join that has some brilliant fact sheets you can hand to medical professionals. It also has a message board / forum you can use.

These are the sites / groups that I would recommend. Ehlers-Danlos UK also has a presence on Facebook and Twitter.

Not all groups are badly run little empires its just Ive been around the block a few times since 2007!

Medical terminology – I know I tend to use it a lot!

I know I have an awful habit of using medical terminology to describe my symptoms or conditions. So I thought I would break it down for anyone who is new to autonomic dysfunction or Ehlers Danlos syndrome.

POTS – postural orthostatic tachycardia syndrome ( its full name) This is diagnosed by a tilt table test. You are strapped to a table with a blood pressure cuff and heart rate monitor attached to you. Its usually done in a dimly lit room and you lie flat for 15 minutes or so, so that base lines readings of your pulse and blood pressure can be recorded. Then out of nowhere you are pushed into an upright position to stimulate standing. Pots is diagnosed if your pulse increases by more than 30 beats per minute or goes above 120 beats per minute during the first ten minutes of the tilt. Non pots people have an increase of 15-20 beats per minute and then their heart goes back to normal. Vomiting, fainting and feeling like crap are all quite normal during this test. I ace this test! In very basic terms your body can’t cope with changes in posture and sends your heart mental.

Orthostatic Intolerance / OI – This is a drop in blood pressure on standing and is again diagnosed via a tilt table test. For the first time I demonstrated this on a tilt table test last month. I have no idea what my pre tilt blood pressure was doing but it dropped to 80/40 on the upright tilt. I will be honest I felt like crap, lost my vision but could hear the technician panicking and suggesting the table be dropped back down! As a result of OI  I have to be careful when I get up from lying down or being seated as I can faint if my blood pressure drops ( as anyone would!)

Arrhythmia – A normal heart rate range is between 60-80 beats per minute. Very fit people tend to have slower heart rates of around 50-60 beats per minute. Below 60 and you are entering bradycardic territory above 90 and you are entering into tachycardia country. I can suffer with both. A heart rate that doesn’t stick in a rhythm is also an arrhythmia. Mine bounces around all over the place and is probably why I feel like shit most of the time.

Autonomic dysfunction / dysautonomia – This refers to problems with your autonomic nervous system. Your autonomic nervous system deals with the bodies functions that you have no conscious control over so breathing, heart rate, blood pressure, digestion, temperature control to name a few. Pots/ OI etc are symptoms of autonomic nervous system dysfunction. Why mine has now been classed as severe I have no idea. I was too out of it after the tilt table test to ask!

Post prandial hypotension – this basically means your blood pressure drops after eating. This is a problem I’ve had all my life I just never realised what it was and didn’t bother to do anything about it until it got much worse. After I eat I get very sleepy and I get palpitations. Some days its really bad and I will end up going to sleep / blacking out no matter how hard I try to stay awake. When I come around an hour or so later I am very confused, I think that I’m back at my parents house and I haven’t lived there since 1996 or I think I’m back at our flat – haven’t lived there since 2003. It gets quite frightening especially if my husband is at work as I have no one who can tell me what is going on. The condition is caused by too much blood going into the abdomen to digest your meal. This causes your blood pressure to drop and in turn causes the blackout / faint . I’ve tried all the first stage interventions low carb meals, ibuprofen taken 30 minutes before a meal, espresso drunk whilst eating. Nothing works and out of all my problems its the one I find hardest to live with.

Low Blood Pressure so what exactly is low blood pressure? The world health authority classes it as blood pressure below 100/60 in the UK most drs think low blood pressure is any reading below 90/60. My blood pressure is constantly low, sometimes even my blood pressure monitor can’t read it and displays error! Your blood carries oxygen and nutrients etc around the body. When your blood pressure is low your brain and other organs simply do not get an adequate supply of oxygen. Too little oxygen and you start to feel fatigued, dizzy, nauseous to name a few symptoms and if it goes low enough you will faint ( syncope as the drs call it). Normal blood pressure is anything above 100/60 or 90/60 high blood pressure is anything above 140/80. Everyone has their own blood pressure number that their body likes to function at. I function best when its around 110/80 but I haven’t seen that in a very long time!

Ehlers Danlos Syndrome / EDS – is a connective tissue disorder that effects the bodies collagen. Collagen is the bodies glue, without it you would fall apart. EDSers as we call our selves have faulty collagen its too stretchy / floppy leading to dislocations, partial dislocations, joint pain, easy bruising, gastro problems and a whole heap of other issues.
There are quite a few different types of EDS mine is the hypermobility type. It means the majority of my joints can move way beyond what’s considered normal. For example I can place the back of my head on my back, I can touch my thumb to my forearm, my fingers can all be moved past 90 degrees, I can do prayer hands behind my back etc etc whilst it was fun when I was younger and when I first got diagnosed I’m in constant pain with my joints. Every day is a battle to work out what I can do to redfuce the pain and have some level of activity. Recently after a week in bed I could barely walk so using my joints as much as I can is important to retain functionality.

I’m sure there are loads of other medical terms I drop into my blog at the drop of the hat but I just can’t think of them right now! If I haven’t mentioned one and you want a basic explanation please leave a comment!