Trainspotting (or a bit of a cock-up by me)

 

You know your life is a bit sad when you manage an almighty medication cock-up and see the immediate silver lining as being “well at least I have a blog post for next week”. Such were my first coherent words to my husband this morning after a night of sheer hell. All because I fell asleep ridiculously early and then forgot to take my medications, one of which is morphine.

 

I take morphine twice a day as a 12 hour slow release tablet. Before morphine I couldn’t get out of bed and had been stuck there for the majority of the time for several months. This was thanks to a dr who decided it would be a fantastic idea to have me walk the length of a hospital corridor. Whilst I managed it and may have seemed ok to her, the following day the repercussions were felt throughout my body. I had a flare up of bursitis in both hips, plantar fasciitis in both feet, my knees throbbed and my back felt like I had been trampled  by a horse. I worked my way through every other non opiate painkiller before both my doctor and I conceded defeat, there were no options left. At 37 I wasn’t prepared to spend what will hopefully be a very long life in that amount of pain on a daily basis.

 

In all the years I have been taking morphine (for the pain caused by having EDS and the early onset arthritis I developed because of it) I have never missed a dose. Over the last 6 years I have on occasion been a few hours late with no problems. I have always attempted to educate those who read my blog (if they don’t understand) the difference between addiction and dependence. An addict uses drugs to get high, someone who is physically dependent on morphine is using it to relieve pain. I have never got high and if you bumped into me in the street you wouldn’t know I took morphine.

 

However the results are the same for the addict and those physically dependent on a drug, if they miss a dose. The body goes into withdrawal. I am now 12 hours past the time I realised I had gone into withdrawal and I still feel like shit despite taking my morning meds. I am hoping tomorrow I feel better and my body will be more settled. Let me also tell you this, as long as there is breath in my body I will never miss a dose again.

 

I wrote in last week’s blog post that I went to the doctors, I was exhausted for the rest of the day. At 18:30 (yes I do know how rock and roll I am) I went to bed. It was too early to take my night time medications which I take between 19:00 -20:00, so I thought to myself, “no worries I will take it later”. I then promptly went to sleep, which I never expected to do. I thought I would listen to the radio and then take my tablets after The Archers had finished at 19:15. I didn’t hear The Archers, in fact I don’t remember hearing much of anything I just conked straight out.

 

I woke up at 21:30 drenched in sweat, now there is nothing unusual in that, I can suffer from reactive hypoglycemia. I even worked out in my head that the night sweat would be in line with it happening within 4 hours of eating. I was so tired I just rolled over and went back to sleep again. I then proceeded to wake up at 22:30, 23:30 00:15 01:30, 02:15 and then finally at 03:00am. Each time I woke up I was absolutely drenched in sweat feeling both boiling hot and freezing cold at the same time. On each awakening I was also feeling more agitated, panicky and nauseous. I thought I was coming down with the flu or something. I had also had to change my pyjamas 3 times and turn my duvet over twice as it was soaked through. I was still at this point blaming reactive hypoglycemia but knowing in my head that the time frame for this to occur had passed.

 

It wasn’t until around 03:20 when Willow knocked my pill-mate (box that divides pills into days/ mornings/lunch/ tea/ evenings) off the bedside cabinet and I turned the bedroom light on to put it back, that I realised Wednesday evenings pills were still sat in their compartment. I checked my mobile phone to see what day it was. My first thought was “shit, no wonder I feel so awful” then it was “what the hell do I do?” I was 8 hours past the normal time of taking them but 4 hours away from when they should be taken. I really didn’t want to mess up the times I take my meds. So I opted to take 10mg/5ml Oramorph and 10mg slow release (from a larger dose) out of my morning meds, to see if it would stop the withdrawal I was experiencing.

 

I tried to go back to sleep but I was still hot and cold at the same time and dripping with sweat. I decided to get up and have a cup of tea in the hope it would make me feel better. As in the half hour I had been tossing and turning I’d had to get up twice for a dump. (I know I am such a lady but that’s what opiate withdrawal does to you and it’s not pretty.) Jay was up when I got downstairs and I was in such a state I could barely speak. I was feeling really nauseous, agitated and angry. I was just praying that at some point the morphine would take the edge off. But as luck would have it my stomach was on a go slow and absorbing my medication really slowly.

 

At 6am I felt like I had the full-blown flu, I was sweating buckets and still feeling like I was burning up whilst be freezing cold at the same time. The nausea was getting worse and I was convinced I was just going to puke all over the lounge floor. I was counting down the minutes until 7am when I would be able to take my morning tablets. It took until 10am for me to feel anything like human again, even then though my pain levels were really high and I was exhausted.

 

For the remainder of the day I felt pretty grim, body aches, no energy, I felt really tearful and out of sorts. All day long all I could hear in my head was the song from the film Trainspotting Lust for life by Iggy Pop, which did make me giggle. Especially when I would catch myself singing it every now and again. I went to bed really early again but set an alarm on my phone to remind me. I was so determined not to go through the same thing again I couldn’t sleep until I knew I had taken my pills.

 

I have a set routine normally when it comes to taking my meds, normally if I go to bed early I set the alarm on my phone so it wakes me up. That night I was so tired I couldn’t even think straight. Also I am good at setting the alarm on my phone and then just turning it off when it sounds and not taking my meds. That is what normally happens when I fall asleep early and this is what has happened all the times I have taken them late. Jay would normally come in and check that I have taken them but he was also shattered that night and forgot. He also hates waking me up as I can be thoroughly evil when woken. Thrashing around thinking I have been attacked or being verbally abusive due to being semi conscious. So it’s hardly a nice thing for him to have to do.

 

I am now forcing myself to stay downstairs until just before 19:00 so that I don’t fall asleep before I take my pills. I never, ever want to end up in that situation again . Even attempting to put into words what my body felt like doesn’t even come close. It  took 24 hours for me to feel fully back to normal and for my pain levels to come down to normal. Mixed in with feeling shitty was also the anger at myself for forgetting to take them in the first place. I don’t mind if I make myself sicker than normal for a few days due to enjoying myself but to make myself sick through something entirely preventable made me seethe. The old negative self talk really kicked in, I didn’t have a nice word to say about myself. It was just so incredibly frustrating.

 

So I shall leave you with the track that has haunted me ever since Iggy Pop’s Lust for Life

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.