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

Women Glow…..

“Women glow,

Men perspire,

Horses sweat.”

Unknown origin circa 1880

This is one of my favourite quotes and I use it quite a bit, especially if anyone tells me that they are sweaty. I have been glowing quite profusely since 2006, it was one of my first symptoms that manifested well before Ptosis in 2007.

I have been sweating, glowing whilst sleeping for quite some time. It doesn’t happen every night or during every afternoon nap but at the beginning of the year it was so bad I was changing my pyjamas three or four times a night and sleeping on a towel. When I arose from my bed there would be a body shaped sweat (glow?) mark on my bedding, where the sheet was dripping wet. I also found I glowed (ha!) in weird places. The back of my neck, legs, between my breasts and my stomach. What was even stranger is that I appeared during this time to lose my ability to sweat during the day.

In 2006 I visited my doctor to discuss my night sweats. Despite being only 32 or 33 at the time, my doctors first thought was perhaps I was entering the menopause early. This annoyed me a little because this wouldn’t have been the doctor’s line of thought if I had presented with night sweats as a male. Their first thought then would have been to look for infection, Tuberculosis or Leukaemia. I know being a woman our pesky hormones have to be checked first and I wouldn’t have been the first woman to enter into the menopause early. A blood test was done and a week later I was informed it had come back as normal. My doctor shrugged her shoulders and said she didn’t know what was causing it. At the time I was busy with my work and the sweats weren’t too disruptive to my sleep at this point.
I should have pursued it but I let it go. Life gets in the way, at the time hubby and I were concentrating on our careers, breeding dogs and generally living our lives. However I don’t think at this point even if I had pursued it I would have got any answers. The sweats came and went with no clear pattern. Even if I had been admitted to hospital for tests, I would have had no clue if they would have happened during that time.
Fast forward to January 2015, the night sweats have become, for the want of a better phrase, an absolute nightmare. For those of you who have never experienced waking up after a couple of hours sleep drenched and this is no exaggeration, some nights I would wake up looking like I had just stepped out of the shower. This wouldn’t happen just once but multiple times during the night. On occasion the sheets and duvet cover would be so wet that they would need changed. The level of sleep disturbance was just killing me. It felt like I would just get into a nice deep sleep and bang I was drenched……again.
With this bout of night sweats there was just no let up it was night after night. By the end of February when I saw my hospital consultants registrar, I was at my wit’s end. I brought it up with the doctor and she took it very seriously, this was the first time anyone at the hospital had listened to me, when I raised the subject of night sweats. I was very ill during the appointment and she wanted to admit me to hospital the following week. Due to my personal circumstances unless it was a medical emergency this wasn’t going to be possible. I now know that I was so very ill during the appointment due to my inner ear troubles, at the time I believed it was down to low blood pressure. I was so disorientated and dizzy during the appointment I thought I may vomit. The doctor organised for me to have blood tests straight away and told me that during my planned hospital stay they would be checking my blood pressure constantly along with my blood glucose levels.
When she talked about the blood glucose levels, it pricked something in the back of my mind. Over the years during the occasions I had night sweats I had moaned on social media about it and a friend had contacted me to suggest that I was possibly having night-time reactive hypoglycemia. It tumbled around in my head for quite some time. Over the next few weeks the dizzy spells became so much worse and like most people with chronic illness I was constantly fighting fires dealing with the worst and most intrusive symptoms first, whilst everything else takes a back seat. I have joked with people before that if I saw my gp about every issue I have, he would have, to clear a week and a half of his schedule. If I can manage problems at home I do so. My gp knows I only contact him when I really need him, rather than camping out at the surgery. Saying that I probably let far too much go, it is so difficult to find that balance. I am very worried about becoming what gp’s term a heart sink patient.
It took several months to get the inner ear problem under control. I had at least one attack a month between March and May. In June it ramped up a gear and I ended up seeing the Dr and getting a referral to an ENT (Ear, Nose and Throat) Consultant. I am still waiting to see them however with the medication Betahistine, (I am probably about to jinx myself) I haven’t had an attack for almost two weeks. You have no idea how good it feels when you haven’t had two to three days of your week written off because you can’t move due to severe dizziness. Once the inner ear problem was under control I could then start my own investigations into what was causing the night sweats.
With the NHS under enormous strain and me not wanting to go into hospital, I decided I would see if it was my blood glucose levels that were causing the night sweats. I contacted a childhood friend of mine who became a type one diabetic during our time at Primary school. I wanted to pick her brains and see what was the best blood glucose monitor to buy. I needed to make sure that if I did manage to gather evidence that proved I was hypoglycemic when I was having night sweats, that it wouldn’t be disregarded due to it being a dodgy brand of monitor. I have really good friends, in two days she had sent me a NHS blood glucose monitor that she had been issued with and had never used as she used a different type now she is on an insulin pump. The kit was supplied with 10 strips, 10 lancets, testing fluid (used to calibrate and check new strips are working) a finger prick machine – I have no clue what the technical name is and a booklet to track your readings in. As soon as it arrived I went on-line and ordered additional supplies. I was primed for action within 7 days.
Blood glucose testing strip, monitor, finger pricker, lancet
Then after having a spell of night sweats prior to the monitor arriving, I hit a dry spell. There has never been any rhyme or reason as to when the night sweats occur. The dry spell lasted from the 5th June until the night of the 19th June. During that time I decided to track my blood sugar during the day so I had an idea of what my average levels were. I tracked them like someone who has diabetes would,  on waking, before breakfast, 2 hours after breakfast, before lunch, two hours after lunch, before dinner, two hours after dinner and then before bed. I knew pricking my fingers would be sore, to be honest it didn’t hurt as much as I imagined it would as this machine could be adjusted. As I hadn’t been doing this over many years my fingers hadn’t become calloused like many diabetics fingers do. On occasion it was sore however I reminded myself I was choosing to do this. Those with diabetes have absolutely no choice, these checks have to be completed to keep them alive. Not all diabetics have to test as many times as this, many have their own set times to test.
Of course when I started checking my blood glucose levels I forgot to factor in my poor circulation due to PoTS / Dysautonomia. When you prick your finger and the blood does not flow freely it is slightly irritating. On many occasions I ended up having to stick my fingers into a cup of hot water to get the blood circulating. This has happened before, when I have blood taken I take a hot water bottle with me and when I had my last Tilt Table Test I had to warm my fingers up in a cup of hot water, as the probe wasn’t registering a pulse.
Finally on the night of the 19th June I woke up drenched in sweat. I have my parents to thank as  earlier in the day they had brought me over some proper Turkish delight, jammed packed full of sugar. Over the course of the evening I scoffed the lot, as I just adore the stuff (it was a reasonably small packet but I was still a glutton). As I was finishing off the last cube I had a thought that this amount of pure sugar may actually provoke an episode of night sweating and then thought no more about it. How I managed to take my blood glucose reading when I woke up I have no clue. I was quite disoriented and desperate to get out of my pyjamas which were soaked through. The reading came back as 3.6 (for USA equivalent its 3.6 x 18), normal is 4-7 below 4 is classed as hypoglycemia and above 7 is hyperglycemia, meaning too much sugar in the blood stream.
 Blood glucose tracker

Having finally captured a night sweat in progress I was elated to have caught the reason why this was happening. One of the clues to this possibly being the cause of night sweats was my overly sweaty glowing neck. Even if I just had a little night sweat and not a full-blown attack my neck would be soaking wet. I now needed to prove that reactive hypoglycemia was the cause by completing an oral glucose tolerance test.

On July 1st I took the plunge and completed the oral glucose tolerance test. I had spent quite a bit of time researching it so that I knew what I needed to do and I also ensured that hubby was home with me, with instructions on what to do if things went awry. I fasted from 7pm the night before and took my blood glucose reading on waking which was 5.3. I then drank a whole bottle of Lucozade original ( this is what was used for my glucose loading tilt table test in February 2014), I knew that this was the product the NHS uses for this test and it is supplied by the patient. It is pure sugar, tasting like syrup and leaving an awful taste in your mouth. I nearly vomited having to drink 380mls of this within 5 minutes.
Tracking the glucose tolerance test

My plan was to check my blood glucose levels hourly, you can see the results in the above tracking document. Two hours in I started to feel unwell, my blood glucose level was 4.1 still within normal however having tracked my levels for a few days I knew that at 4.1 I could feel very shaky and start to feel like I was having a hypo. I have hypos induced by medication before and it always starts with a feeling of shakiness. Over the next 30 minutes my symptoms just got worse, I was physically shaking, feeling a bit disorientated and just pretty crap. Out of curiosity I measured my levels and they had dropped to 3.7. At this point my husband was begging me to end the test as I had proved I was suffering from reactive hypoglycemia ( my blood sugar levels drop after consuming high amounts of carbohydrates / sugar). I was pretty stubborn and continued for another 30 minutes. Even though my blood sugar levels had started to rise, I still felt horrid so ended the test by having tea and toast. Within 20 minutes there was a world of difference although I felt very drained for the rest of the day.

Due to illness that required antibiotics I ended up chatting to my gp last Friday where I explained to him what I had been doing regarding tracking my blood sugar and proving reactive hypoglycemia. He was quite impressed at my detective work and agreed with me that going into hospital on 14th July would be a waste of resources. I was relieved he wasn’t prepared to write this off to “just PoTS / Dysautonomia”. He advised me that if my hospital consultant didn’t refer me to an endocrinologist, he would. He is concerned that either my pancreas is sending out too much insulin or that my liver isn’t sending out glycogen when my blood sugar levels drop. Whatever is causing this needs to be identified. For the time being he has advised me to eat high protein, low carbohydrate foods and to eat something before bedtime that will release carbohydrate slowly whilst I sleep. He did suggest eating steak before going to bed but that was taken off the table when I told him I was a lifelong vegetarian.

From posting on a group on Facebook I know that I am not alone on the night sweating issue with it affecting both men and women. However none of these people seem to be getting answers, many of them are being told ” it’s just PoTs”. This isn’t right when there are so many things that could be causing this and some of them serious conditions.