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The title is to warn you all that this is not important stuff, only I feel I should make a record of certain symptoms fluctuations and patterns regarding medications so that I can make some sense of it (potentially) along the line. It is a giant ramble so unless these issues apply to you, don’t bother reading! I have bolded key themes, for easy skimming 😉

(There is a good link to a webinar about POTS and Orthostatic Intolerance at the end if you want to understand it better.)

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Since my holiday my IBS has been in a general flare – main symptoms being my usual issues of increased wind and bloating/abdominal pain and more frequent “happenings” (shall we call them?). I have also had a bad bout of diarrhea (though i did eat more veg beforehand which did not help) and also an evening of very bad nausea (though i did narrowly avoid being sick) and this is rare for me.

While on holiday things were actually pretty good in this department, but things have got gradually worse. The only thing that has changed is that I started to take Eszopiclone – a sleeping tablet – every night from the start of the holiday. The reaction was obviously not immediate or dramatic, but I wonder if this medication is irritating my digestive system. It does say on the packet that it contains wheat starch and lactose – but surely i cannot be so sensitive that half or sometimes one whole (small!) tablet a night can do this? I think I am more susceptible to starches. Dairy products do not do me much good but I do eat some cheese, so that amount of lactose really should not be an issue. Or, of course, it could be the drug itself or just a random flare-up. I have not changed my diet in any significant way (the chance would be a fine thing!).

So, while not a major problem at this stage, it is a significant change and not one I am happy about.

That said, my nerve pain/itching has been generally improved since the holiday and I wonder if sleeping better has helped this. This Neuropathy, as it is most recently diagnosed, was very bad in the weeks before the holiday, and during the holiday itself. I have not yet heard back from the specialist about upping my dose of Gabapentin, which i take for this, but it has calmed down a lot anyway. I would still like to take a higher dose as it is still a big issue for me and I have to stick to certain rituals to avoid it which i would like to relax on, but it has been nice to have a general reduction in symptoms. Also perhaps the slightly less hot and humid weather may be helping.

So, my plan of action is to stop taking the sleeping tablet (did not take last night) and see if after 10 days or so anything has improved “down below”. I may have to start it again and re-stop to confirm the link as life is never that simple with these illnesses. Also I am going to research and see if there is a brand that does not contain the wheat starch, though that is a long-shot.

I have also stopped taking my antihistamines since the holiday, in a gradual fashion, on advice from the dermatologist and POTS specialist, who both agree the Gabapentin is the best drug for the symptoms. I can still take an anti-histamine if i get a bad attack of itching/pain but am not taking them on a regular basis. I have been very surprised that this reduction has not caused a flare-up in symptoms as when I started to take them I did experience an improvement. I have wondered if that improvement was due to the soporific effect of the night-time antihistamines, as I slept better in the first weeks of taking them that I had done for literally years. I think better sleep could easily account for reduced nerve pain, and I wonder if that has happened over the last few weeks on the new sleeping tablet also, as the gabapentin alone did help but things improved again with better sleep.

Another thing to note is that I do not think my days are dramatically better since taking the sleeping tablet. I think i assumed I would feel much better and have more stamina if I slept better. This has not really happened, but I would say my mood and stress/anxiety levels are improved. Being awake in the early hours of every night usually with neuropathy and other discomfort (bladder/back pain), as well as getting up much more for the toilet every night was hard to cope with. I have enjoyed getting up less and usually getting right back to sleep even if I do. I had hoped to phase out my daily nap when sleeping better, this has also not been as easy as I would have hoped. Some days I feel I have really slept well and when I go to lie down I do not sleep properly, just rest. This is good for “sleep hygiene” though I have come to realise there is only a certain amount of control I can have over that. I have tried to do everything right for years and my sleep has not been good quality. Most days I still need a nap, only an hour of actual sleep, though I do lie there for longer in total. In an ideal paced world maybe I could avoid it but in reality there is always something to recover from, rest for etc.

My cognitive function has been quite low at times and I wonder if this is a side effect of the medication. I don’t always wake up with a hangover feeling as such, or no more than is quite usual. I would expect better sleep would make me more mentally alert but I have not found that at all! When I have taken the drug I do find that I do not remember things that have happened in the night and cannot speak/think clearly if I try to have a conversation if I wake up in the middle of the night… but I was like that last night without the drug so maybe it is just a symptom of being really asleep!

One other thing to note is my neck – it is literally a pain in the… neck! It has been very weak for a long time and the muscles on top of my shoulders where it joins my neck (an anatomist I am not!) are constantly tight and painful. The smallest thing seems to trigger it into pain. This is not a new problem but it has got worse. I find the positions that I can hold my neck in comfortably are limited to about one, sitting with my chin tucked in, basically (lying down on my back is also good). Any activity where I have to hold my head in any other position, or move about too much can trigger it off. It also clicks in a nasty cracking way which cannot be good but feels necessary. I cannot think that it is just deconditioning of my muscles as if there are any muscles that are constantly in use it is the ones holding up my head! I do not lie in bed more than 12-13 hours out of 24 so they are being used quite a lot.

Regular readers will know that I have tried an osteopath and that did not work out, so I do not know what to do apart from mention it (again) to the ME/POTS specialist on my next visit. Upper back/spinal issues have been a constant issue for me for the duration of my illness, and yet are given no attention by the medical profession (I did get a useless physio referral once or twice). Hmm. I cannot help but think that spinal health is important for those with neurological problems, seeing as all the signals/messages have to go that way, but as we are always being told: chronic pain is not necessarily a sign of injury or anything being wrong… Hmm, double hmm.

Lastly, just to note that I have now run out of Ivabradine, the drug that the specialist wanted to try me on to slow my heart rate down to help with POTS symptoms. I am trying to challenge the decision of my GP (this is a family doctor, “general practitioner” for those not in the UK) not to prescribe and have asked the specialist to talk to the GP to see if they can agree something but I have yet to hear anything. I think it did help my heart be a bit calmer in response to standing and I think it made it easier. I have noticed that I have had a few more quite bad and surprising turns from doing quite small things in the house which may be due to stopping that drug. I have noticed my legs are often quite purple when I sitting, though it could just be the warmer weather making things sluggish or that I am noticing more (I tend not to look!). As always, hard to tell.

If you want to know more about POTS and Orthostatic Intolerance for people with ME/CFS in general, I recommend this webinar from the CFIDS Association: http://www.youtube.com/watch?v=5iF30TVLaRE . As well as explaining what is going on in the body there is a lot of info about research that has been done, what can help and details about different drugs. Very comprehensive and perhaps useful to take to your doctor (there is an information sheet to go with it: http://www.cfids.org/webinar/cfsinfo2010.pdf) if they do not know much.

POTS: I went to the hospital again the other day and saw the POTS specialist and told her that after over three weeks on the higher dose of the medication i have not yet started to feel the benefits of it, in fact i have been feeling worse than on the lower dose.

I have been having quite bad side effects, particularly affecting my temperature in bed in the afternoons, where i will feel cold despite two heated wheat bags, a hot water bottle, two duvets and central heating… only to suddenly get very hot and sweaty and covered in goosebumps after about an hour of feeling cold. The top of my head was also cold and i was having to cover myself completely with the duvet! Also i felt that my stamina and recovery time from very small activities was worse. I am not having the POTS “episodes” so much although i am still dizzy and have trouble standing for long but that it at least an improvement.

So i am now back on the lower dose. i hope that i feel the benefits i felt when i was on it before, as i am starting to doubt that it was a big improvement and that i am thinking things are seeming worse now because my hopes were raised too high. It is so hard to measure/judge how bad things are as it is so subjective and changes according to what is happening at the time.

Also i wonder where we will go from here, even if the lower dose makes me feel a bit better, if i cannot tolerate the higher dose. After hoping for double the improvement on the double dose, i am wondering again if this is it.

Interestingly at the hospital my tests when i stood were different than before i was on the medication. My blood pressure did not drop as much when i stood, and my heart rate went up and down a bit but was not as ridiculously high as before nor as consistently. So it seems i should be feeling better and more able to stand… but am i? I feel as if i can stand up a bit quicker and be less dizzy but my stamina for standing is about the same. I still get weak and dizzy quite quickly. It has not lead to the acute “episode” event which would happen regularly when out at appointments etc though and this is very good. I don’t mean to sound ungrateful, because i am, really, it just feels like a step backwards.

DLA: Well my tribunal is in two days. I am trying not to let it stress me out but i think it is taking it’s toll on me. I have been feeling quite down. An adviser woman came around to talk to me about what to expect, told me things to watch out for and what will likely happen. This has helped a lot, although it was all as expected really she did highlight some things that i had not really thought though. I do not think i will get much out of it but i just really hope that they listen and that i feel they have made a fair and considered judgement, even if i am not awarded anything. If they do not listen or allow me to explain how thing are properly it will be so frustrating, as the DWP medical was.

Holiday: The thing that is helping me to distract myself from the Tribunal is the thought of going away for a week! I will have a week to recover from the exertion of the tribunal, then my partner, my dog and I will be going for a week in a cottage a short drive up the coast. I am so pleased my partner can drive now 🙂 I just hope it does not rain all week so that i can take some photos and enjoy the views. I know it will be freezing cold but i think i can cope with that (as it is the same here after all). It is a small price to pay for not being able to travel abroad and it is a beautiful area anyway. Just a change of scenery will be so welcome and i hope to be able to spend a bit of time sitting outdoors enjoying the sea views, even if wrapped up like a mummy!

Work: also i have been summonsed to a meeting by my employer again to discuss my ongoing sickness absense (now over two and a half years!). It will be just after my holiday. I wonder if they are going to give me the final shove this time. I have a Union rep coming with me as usual so we will see what happens…

Anniversary: It is also now the TEN YEAR anniversary of when i became ill. I have not been dwelling on it too much as i have too much else to preoccupy me but i think it is affecting my mood a bit too. I said to my partner when she came up to bed a couple of nights ago:

“i think it is ten years today that i got ill”

she said “oh i didn’t realise, if i had i would’ve brought a sparkler up to bed!”

I thought this was a funny reaction and it made me laugh.

Warning! This blog discusses women’s issues, periods etc!

Last week i went to see what i thought was a hormone specialist… it turned out to be the sexual health & contraception clinic – which was ok as my main query was about my periods…

My main issue is that my periods really drag me down. This is nothing new, but the last 6 months or so i have seen a definite pattern in my symptoms, in that i have a “better” week (or sometimes just a few days) just before my period (when i can feel pretty good “at rest” and even manage to go out and about a little bit without major payback) and then just before my period i start to feel bad, feel very low in energy and everything is a struggle during my period, with all my bad symptoms of headaches, dizziness, muscle weakness, achiness, sensitivity to noise, etc etc and then it seems to take another couple of weeks to gradually get over the event and it all starts again.

The doctor i saw was a little confused as most people feel worse the week before, but has given me Norethisterone, a progestogen only pill to take, starting on my 5th day of my period and to take continuously (i am going back in 6 weeks or so for a check up). If it seems to agree with me, she said we could consider the Depo Injection… (very scared of that as heard it can have bad side effects and once you have it it can’t be undone). The idea is that my periods will cease and won’t drain me so much, although there may be some spotting and side effects (weight gain, bloating, spots, dizziness – just what i need!). They don’t know how it will affect me until i try so i am giving it a go, although not without some concerns. I am just hoping i don’t miss out on my few good days a month as a result!

I am willing to try it now as what i used to consider to be an ok/average day is now the highlight of my month and my general level of functioning has gone way down. My hormones may not have much to do with this but my period seems to be just one more burden on top of all the others that i really could do without. Unfortunately there does not seem to be a magic answer so i may be making things even worse but don’t know til i try.

Progestogensare like natural progesterone but are synthetic hormones and are not without controversy and i am not entirely comfortable with “polluting” my body and messing about withit when it is evidently already struggling to function, but it is worth a try. I also hate taking things then wondering if my odd symptoms are due to side effects of a drug or if they are the ME, and not knowing how i would be feeling without taking it…

Dr Sarah Myhill does not recommend people with ME take the pill, but she does not really talk about what to do about period hell either so i don’t see any obvious alternatives! She talks more about contraception, which is irrelevant to me as a lesbian. She does say Progestogens can cause depression. I have not been depressed the last couple of months so will be suspicious if i suddenly get down. I have been taking Agnus Castus for a long time, which is a herbal remedy and which definitely helps with keeping periods regular and i think make mine last for less days as well. I had stopped taking it last month in case the hospital wanted to take any blood tests and my period was late this time, which has not happened in a long time, so i think it certainly is worth a try for anyone not on the pill who has issues with PMT etc. (Kira brand has seemed best to me).

So, my period came today! I am so happy as it is 3 days late and have been feeling very premenstrual, as well as having bad (and different to usual) leg pains – from my hips and down the sides into my knees and beyond! Also i usually get bleeding gums when i clean my teeth around the time of my period (who knows why) but yesterday when i got out of bed in the afternoon and sat in the next room chatting to my girlfriend, my gum spontaneously started bleeding into my mouth! It stopped quite quickly but was quite copious there for a minute. Yuk. I even started looking through the kitchen cupboard yesterday and throwing out all the out of date rice, dried beans, etc. “Nov 2007? looks ok… 2006 throw it out!” typical PMT behaviour…

This means that i need to start taking the new tablets on Saturday… 3 times a day! Better make a ticky chart or i will forget whether i have taken them or not… I am just hoping that i will never have to be that woman again who constantly talks about her periods, when she is due, how bad she feels, blah blah so boring, but recently whenever anything is happening (an appointment, visitor, etc) i have to check my diary and say whether there is any chance i will be feeling even half up to it… but how much of a long term solution is taking this pill i wonder? Surely i can’t just take it forever? How messed up will my hormones be after taking it? Hmm.

The other thing that i wanted to talk to the hormone specialist about (turns out i need to see a separate Endocrinologist for this) is to discuss the chapter in Fatigued to Fantastic! about hormones and ME (see previous post). The doctor i saw at the sexual health clinic said that there is a doctor at a local hospital who is interested in people who are slightly sub-optimal in various hormones and the effect that can have but that she did not think they would try treating me even if i am as they tend to have a “hands off” approach. This means “do nothing in case you are sued” approach, or a “NICE guidelines say NO if you have ME” approach, i can only assume… So if Dr Teitlebaum is right about hormones and ME/CFS then i will probably never know. I could try to get referred to that doctor but i don’t expect there is a lot of point in wasting my energy and taxi money. This is a bit disheartening as i am doing everything else in the book (taking supplements for my mitochondria etc) but if there is a hormonal problem holding me back i can’t do anything about it myself… what is the point of trying to help myself if i can’t get any professional support/expertise?

ME/CFS Awareness

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