A dear friend

Rob, Jay, Andrew & Paul

On 24th January hubby and I lost a dear friend who we had known for 20 years. Our loss pales into insignificance, a mother lost a son, a son lost a father, his girlfriend lost her soulmate.

Andrew touched so many lives and will be missed by so many people.

Rest in peace Andrew.

Jay, Paul and Andrew

Side effects

Last week was a bit manic by my standards, a gp appointment followed by a trip to hospital for my caffeine infusion. Add in visits from friends and a surveyor to look at the damage a water leak had caused (thankfully none but there is cosmetic damage as part of a wall had to be removed) it was too much for me. Most of these events occurred before Thursday's trip to hospital, so when I wasn’t feeling well on Thursday I put it down to doing too much.

The caffeine infusion was a bit of a nightmare as my veins were not playing ball. If I am tired and cold my veins tend to hide and I knew that my blood pressure was low, so I was constantly drinking to try to give it a boost. After nearly a litre of oral fluids I managed to raise it to 112/83, I have no idea what the starting point was but I would hazard a guess of between 90/60 - 100/70 both of these readings although considered in the normal range make me feel rank, I feel better the closer I get to 120/80. By the time the infusion had finished it was reading 125/85.

The department was exceptionally busy and this wasn’t the day for a cannula insertion to take longer than the IV caffeine takes to administer (2 hours). The staff that have experienced my veins before now tend to run away, which means it takes ages trying to convince someone else to give them a go. What was more irritating was the nurse that had the second go, wouldn’t listen to me. She was one of those nurses who just ignores what the patient tells them and carries on regardless. Three failed attempts later she decided that a glove filled with hot water might be a good idea. In the end I had five different people attempt to gain IV access, it was a naval doctor who got a vein on his first attempt. However by then he was discussing with me why I hadn’t got a port to make life easier for them and me.

I had already discussed this with my neurologist, whilst he was performing the occipital nerve block injections (GONIs). He isn’t actually my doctor anymore having moved departments but is often in the unit where my infusions take place. So when I know when my next infusion will be I email him so that he can do my injections. The headache nurse that did them before doesn’t do them the way he does and I find his are much more effective. The upshot of the port conversation was that I wasn’t having the infusions regularly enough, the risk of infection and the fact that they hadn’t called down the vascular access team. Believe me that is only going to be a matter of time.

I did manage to run into my PoTs consultant as we were leaving the unit and I asked him about the possibility of starting melatonin due to my sleeping problems. As it was just a quick check on me to see how I was doing he asked me to email him to remind him. There are such good doctors at the hospital, who have no problems with patients emailing them when they have concerns. He is the doctor that writes the prescription for the caffeine infusion each month. I email him the week before to remind him and he emails me to let me know he has done it.

The day after a caffeine infusion are always a bust, I need to rest all day due to the travel involved and all the stimulation from the lights and noise. Friday I spent the day lying on the sofa, I put down not feeling great to the caffeine infusion and the explosive diarrhoea I had experienced at 1am (for over an hour). Initially I put the shits down to a stomach bug but having thought about it, the caffeine infusion can act as a bit of a laxative and maybe it was that as after the one hour-long bout I didn’t go again.

Saturday I was floored by vertigo and my heart kept doing funny beats, where it goes slow and then returns to normal speed. I felt so ill that all I did was lie on the sofa under my heated throw. I took some stugeron (travel sickness tablets) and that did ease it quite a bit but I was very limited with only being able to lie down, using my chromebook or phone was difficult. My blood pressure was also feeling low, I didn’t measure it, I rarely do now as I know what my symptoms are, plus it was upstairs and there was no way I would manage to get it. I ended up crawling into bed at around 6pm because the stugeron had worn off and the room was spinning. I looked ghastly, white as a sheet with big black rings under my eyes.

Sunday followed the same pattern, woke up feeling rough despite sleeping like a log. Now along with the low blood pressure, vertigo, funny heart beats and generally feeling like crap I had developed wheals on my face. I also felt extremely low like I could burst into tears at any moment. I put being low down to feeling so awful. It wasn’t until the late afternoon I put the pieces of the puzzle together.

When I saw my gp on Wednesday I had told him that I hadn’t had a proper nights sleep since the end of November. I had either not been able to get to sleep at all or slept for one or two hours and then spent the rest of the night awake. This sleeping problem was then triggering anxiety, an increase in pain levels and being bad tempered. When I don’t sleep I find that my normal aches and pains are amplified by a factor of 100. This then makes me anxious and then continual levels of high anxiety can send me spiralling into depression. Having been severely depressed previously I didn’t want to go back there.

For about a year I have been taking the antidepressant mirtazapine (15mg) to help me get to sleep. Initially it worked wonders but over the course of a few months it was no longer working. My gp agreed with me to increase it for a month to help me get some sleep. I started taking the increased dose on Wednesday night, it worked beautifully I was falling asleep and staying asleep. However the start of me feeling really rough coincided with increasing the medication. After a quick search on Google it was obvious that the mirtazapine was what was causing the problems. Side effects listed included

• Vertigo
• Low blood pressure
• Palpitations
• Rash
• Changes in mood

And they were just a few of the side effects as there were many listed. So I dropped the dose back down to my normal 15mg on Sunday night to see what would happen. If I still had vertigo etc on Monday then I would contact my gp and see about stopping the mirtazapine altogether.

Monday morning however I woke up with my eyes very swollen

In these photos the swelling has come down considerably. My under eye area had been very itchy since Thursday which I had put down to dry eyes which is something I suffer from anyway. Monday morning I really had to stop myself from scratching as I would have scratched until I bled. I dosed myself up with antihistamines and then waited to see if the vertigo started again. The vertigo had been coming on 3-4 hours after waking up, so I bided my time before pronouncing a vertigo free zone. Thankfully the vertigo hasn’t come back since dropping the dose back to 15mg, my blood pressure is back to its low but normal state.

My gp rang me by chance on Monday and I managed to miss the call. He let a voicemail saying he had received an email from my PoTs consultant about starting melatonin and had written me a prescription for it. I rang the surgery back to pass on the message I had dropped the mizatrapine back down to 15mg due to the side effects I was suffering.

Tuesday morning there was no swollen eyelids which was fab and I had slept well due to the Melatonin I had taken the night before. I have been sleeping all night and feel more rested than I have done in a very long time. I still have fatigue but it’s no longer at the level it was when I wasn’t sleeping. I don’t know now if the mizatrapine caused the swollen eyes or if it’s something I have eaten. It could be anything at all as I can react to stuff and then the next time I have it there is no reaction.

So now I am back to my normal level of crappy health after four days of feeling truly awful and almost being confined completely to my bed due to the vertigo. At least however (touch wood) so far there seems to be no issues with the melatonin.

Changes

I am not very good with change these days, when I worked it was a culture of adapt or die as things changed constantly but when your world is as small as mine changes happen less frequently and when they do they can rock your world.

For the last 20 years I have had the same neighbours. When I moved into my flat back in 1996, my neighbours rented the flat below mine. When we moved to our current location I had no idea that my old neighbours would be living next door. We laugh about it and say that I am stalking them but it was purely chance. They lived on the street I wanted to live on but when they moved I had no idea where they had moved to. So when we were looking around the house for the first time P stuck her head out of the bedroom window and accused me of making the house prices drop. We have been good friends with our neighbours for years and know that should we ever need them day or night they would be there for us. As they proved the night or more correctly 3am in the morning six years ago when Jay was hit by a drunk driver in a stolen car. Having no family in Exmouth means that we rely on friends to help us out. Our friends have become like an extended family, so it has been very hard to accept that this will no longer be the case.

On 30th November P let me know that her tenancy had been terminated. Through no fault of their own they would have to move, the landlord had decided that a member of their family needed the house and now P and her long-term partner would have until the end of February to vacate the premises. Obviously it has been a deeply stressful time for them both, house rental prices in Exmouth are astronomical, when you add in agency fees and the cost of moving, it makes it very difficult to find somewhere. Thankfully they have but hubby and I are left without them. They will still be in Exmouth but currently it feels to me like they may as well be moving to the other side of the country. It seems selfish to be sad that they are moving when it is their lives that have been turned upside down but I hate it. I have been left feeling very unsettled and it’s not the only change I have had to face.

A few weeks into December we received a letter from our doctors surgery that informed us that our gp was leaving the practice mid February. Our doctor is one of those gp’s that goes above and beyond for us. He is the only one that has ever understood the stress placed on Jay looking after me. Whenever I speak to him he always asks after Jay and he does the same when hubby speaks to him. If I ring to speak to the duty doctor he always rings me back, as he knows all my drug allergies and various medical problems. We know that whenever we need him he will be there and now he is going. I am terrified of what my new doctor will be like, my current gp has learnt alongside me as I have been on my journey of understanding EDS and PoTs / Dysautonomia. When he took a sabbatical last year he worked as a gp in a different part of the country and diagnosed a young woman with EDS. He proudly told me this when I saw him on his return, he told me if he had never had me as a patient that wouldn’t have happened. That was a really nice thing for him to say. I know he’s not a friend he is our doctor but I am really going to miss him. With both him and my neighbours leaving it feels like our safety net has been pulled out from under us.

I can’t say that I see our neighbours or our gp on a regular basis but the thing is I know they are there if I need them. When things go wrong I know if it’s medical I can call the surgery, if it’s something to do with the house I know I can rely on P’s partner to help. Numerous times he has helped us decorate, nail down flapping fence posts and rescue the dogs on the night Jay was hit by another car. They have acted like family, I am worried that we will lose that when they have moved.

I know they aren’t moving to the other side of the planet but I also know how easy it is to lose touch with people. I experienced it myself when I moved from Plymouth to Exmouth. I tried keeping in touch with my friends but it felt like it was all one way traffic. Unless I rang them I never heard from them, I guess it was out of sight out of mind. I have also had friends leave the workplace, still living in Exmouth but you lose the friendship when you don’t see each other everyday.

The change or the prospect of change has hit me hard and now my anxiety levels are through the roof. I am no longer sleeping properly (I haven’t done since P told me the news on 30th November) and I find myself getting anxious over the slightest thing. My anxiety is waking me from sleep and I am constantly having my stress dreams where I am trying to read a book but instead of letters there are symbols and the pages are turning too fast for me to read what is on the page. I get so annoyed with these dreams that I wake myself up, which then leads to less sleep, which then leads to an increase in my pain levels. I just can’t seem to win at the moment.

I am however winning on the gluten-free front. I have had around a week now with no stomach pain, diarrhoea or excessive wind. It seems really weird not to be guffing all the time, just goes to show what a an old wind bag I was previously. It is really weird not having a stomach that blows up the minute you eat or drink anything. Since giving up gluten I have also had no reflux whereas over Christmas I was waking up during the night with a mouthful of vomit, choking. My skin rashes are also clearing up and my hidradenitis suppurativa has also improved. I don’t want to say my HS has gone as I will end up with a very painful abscess

This week is a busy week with a gp appointment (probably the last time I will ever see him) and I have my caffeine infusion on Thursday, today if you are reading this blog on the 12th January. I class any week with more than one appointment in it as a busy week as I will need several days to recover afterwards.

Mollie on her dad's new Star Wars bedding.

New Year

I haven’t seen the new year in for several years, I’d love to but by 8pm most nights I am in bed, if not asleep, well on the way. The Myasthenia Kid household is just pure rock and roll when it comes to celebrations.

New Year's Eve is something I have hated for quite a while, even as a teenager I could never see the fun in standing around in a packed pub, with a load of strangers vowing to stick their tongues down your throat on the stroke of midnight. In fact I have only ever been out once (twice if you count a house party where we saw in the year 2000) on NYE and that was a disaster as a wisdom tooth decided to erupt, dragging a piece of gum up with it meaning every time I closed my mouth, I felt like I had been kicked in the face. Due to the severe levels of pain I had to call it a night around 1am, which I found out did not go down well with the friend I was with. It's lovely when you find out through mutual friends your pain has ruined someone else's evening! I also had to wait until January 2nd before I could have the bloody thing removed. I don’t know if that tainted my feelings towards NYE but another year passing me by doesn’t bring out the best in me.

The New Year also brings an anniversary, January 5th 2007 I came down with the worst migraine I have ever experienced. When the migraine headache cleared I was left with the right side of my face feeling like it was coming around after a dental anaesthetic, by 11th January (2007) I developed ptosis. This year these dates will mark a decade of ever worsening health, when normal life finished and navigating the world of chronic illness started. This year more than ever I couldn’t shift the black cloud that was hanging over me on December 31st.

This last Christmas holiday period has been one of the worst I have experienced health wise. Normally I rally over the Christmas period, not this year. My PoTs ( I do hate it when I say my xxx condition but what else can you say?) was relatively well-behaved, other than two micro blackouts. My EDS has been naughty but just for two days however it was so bad that I would have happily ripped out my spine and pelvis if it had been at all possible. This year for a bit of variation I have been plagued by GI (gastrointestinal) issues.

To give you a bit of background a first degree relative of mine is probably going to be diagnosed with Coeliac Disease. In this person the disease has been asymptomatic or silent on the GI front. Some might think they have been lucky as GI symptoms with Coeliac Disease can be pretty awful but the problem with asymptomatic CD is that it can wreak havoc elsewhere in the body. Many people think that CD just means that you can’t eat bread or more specifically anything containing gluten but they don’t know why this is. To explain it quite simply the body sees gluten as an enemy and in its effort to destroy the enemy it also destroys the small intestine by damaging the villi which help you absorb your food. It is an autoimmune disease and it can only be treated (not cured) by never eating gluten again. For more information -https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/

Now to test for Coeliac Disease you must have been eating gluten for at least 6 weeks prior, as the blood test looks for Antibodies IgA or IgGG. By eating gluten if you do have CD these antibodies will be in your blood at a high enough concentration for the test to be positive. I have been rubbish with gluten for years, eating large amounts (by which I mean more than the equivalent of two slices of bread a day) I get horrendous stomach cramps and diarrhoea. I feel as if I have been poisoned, after eating gluten. I have been tested previously for CD but it has always been negative. Doctors have always told me that it is IBS that causes my stomach pain and diarrhoea. No one has listened to me when I have told them the correlation between eating gluten and being ill. At various points in my life the symptoms have got so bad I have gone gluten-free and you guessed it the symptoms went away. So over Christmas knowing I would be asking for a blood test, I knew I would have to eat gluten.

I love mince pies, french bread, Christmas cake, every Christmas goodie seems to contain gluten and I indulged …..a lot. I have never in my life been as ill as I have this year over Christmas with stomach pain, diarrhoea, wind, bloating etc. In fact two days out of 14 I didn’t eat at all as I hurt from the back of my mouth downwards. I got through my IBS medication at a rate of knots. It got to last Sunday and I had to admit defeat, I just couldn’t do this anymore. Without over exaggerating I felt like I was dying, my joint pain was getting extreme, muscle pain the same, my shit did quite frankly stink as did my copious amounts of wind. When you fart and your husband runs away with his eyes watering you know there is a problem. When the dogs also leave the room looking at you with disgust, it's time to say enough is enough.

So I have been 2 days gluten-free, my stomach has settled down. It’s still what I call a bit prickly but I can no longer feel every inch of my intestine. My stomach if it’s been  through a bad patch will take a few days to settle but it is bouncing back much more quickly than it normally would. The levels of wind have dramatically improved to be almost non-existent, much to my husband and dogs delight. The bloating has also gone, I wish I had measured myself before I started going gluten-free because I swear it's inches smaller (but I am big anyway). My joint pain severity has also decreased, they no longer feel like they are burning. I know its way too soon to put all this down to going gluten-free, it maybe that everything felt awful because my stomach was so bad and I felt thoroughly miserable. I know when my head pain is bad, I also feel horribly unwell.

Due to the time of year I can’t get a doctor’s appointment until next week (which I actually thought was good) where I will ask if I can have the Coeliac disease blood test. I won’t have been eating gluten so the test may come back negative but I just can’t go through another two weeks, like that again. For the moment I will be gluten-free.

For those of you with Ehlers Danlos Syndrome (EDS) it maybe worth having a look at this study which shows that people with CD have a higher risk of also having EDS http://www.dldjournalonline.com/article/S1590-8658(16)30436-4/abstract

Happy New Year from Mr & Mrs Myasthenia Kid.