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Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.

She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick! 

I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.

So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!

Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.

It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!

It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…

Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?

Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.

So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!

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?

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