Well, it seems as though i may have “POTS” (Postural Orthostatic Tachycardia Syndrome). There is a good website here that explains what it is, click on the links under “POTS place” on the left hand side…

I have been taking part in a research study about CFS/ME and Orthostatic Intolerance and have been to the hospital three times in the last month where i have been monitored (heart rate, blood flow, pressure etc) while lying down for ten minutes, then standing for two minutes. It seems that when i stand, my heart beats very fast to try to deal with becoming upright, which it seems my body does not do very well. The specialist asked me if i would be prepared to see her as a patient as there a number of drugs that she can try to manage the problem (it can’t be “fixed” as it is a problem of my autonomic nervous system, as CFS/ME is as well) and maybe (maybe) make me feel a bit better… which would be nice as i have been feeling pretty awful recently and it feels as if things have been just getting gradually worse and worse over the last couple of years or more that i have been off work.

I have been having problems with dizziness and feeling lightheaded and weak, particularly when i stand up, but at other times too (sometimes when sitting still), since i was still at work, and it has been a major problem for a long time. I find it very hard to stand for any length of time, which rules out things like waiting at a bus stop (even if there is a “seat” to perch on as you are still almost standing), i can’t queue in shops and even walking in general is pretty hard. If i bring on a “funny turn” in this way, i have to get home and to bed as soon as possible as i feel so awful, just lose all power and energy. Even when i don’t feel dizzy as such, i find it very tiring and hard work, and feel generally weak and lightheaded. I find it hard (and often impossible) to go anywhere or do anything much, basically. My doctor advised me to drink isotonic drinks and eat more salt, and said she didn’t think i needed to see a specialist as although my blood pressure drops a bit when i stand, she thought it was mild… “I just think your ME is quite bad at the moment”. Hmm yes… but why, Doc?

So that is partly why i signed up for the research study, and now i am glad i did, but i also feel that i should not have had to… apparently this condition is common in people with ME, so why has it taken so long for someone to notice? Maybe as it is difficult to treat and not life threatening they don’t bother… all the same it seems it can be very debilitating and any improvement that can be made would be most welcome. I don’t like taking medication and am a little concerned about what i will be taking, and if i will take it permanently, but life has been very limited and anything that can make everyday things a bit more possible or less exhausting would be nice. I am trying not to get my hopes up, of course…

In ten years of illness, this is the first time a physical test has come back as abnormal. I wish i had had this early on so that i would have had something to wave at the people who said it was all psychological (the insurance company, in particular, i am looking forward to telling them!). Maybe i am getting ahead of myself, i have no piece of paper to wave or even appointment with the specialist as yet! But in the couple of minutes she spent with me she seemed to be speaking as if she thinks i have it. Reading about it certainly rings true, especially now that i know what my heart is doing. She asked me if i ever noticed my heart beating fast when i stand up, i said no! It is not pounding away heavily or anything, just faster, and who knows what is normal without actually focussing on it. I have noticed it, but mostly when lying down, i think just because it is quiet, maybe the pressure on my pulse of the pillow etc etc. maybe it takes a while to calm down/recover to a normal rate after lying down…

Since i got home from the hospital, i stood up against the wall and took my pulse for 15 seconds after one minute of standing: 31 beats (124 beats/min), then i took it after 5 minutes and it was still 29 beats (116), so it obviously does not just happen when i first stand, but continues for a while… i rarely can stand for much longer than that anyway! Over 120 beats per minute is tachycardic apparently, so when i initially stand it is over that, over 100 beats per minute is still seen as abnormal.  Even though i knew there was something wrong, it was quite a shock to know that my heart is doing that. Now i know it is, it seems so obvious and i notice it a lot, although i am trying to ignore it!

I am a little confused about the diagnosis, as the symptoms, likely causes etc are so similar to ME, that there must be connections. Do i even have CFS/ME? I think so, as i am not sure that i have had POTS for the last ten years… it has maybe just developed over time or become bad enough to qualify as “POTS” but maybe have had issues in this department throughout the illness? Who knows. The lightheadedness and dizziness i think has never been as bad before as in the last couple of years, but has been present at times. This website speaks a bit about the connection…

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system’s regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

Well, who knows… i look forward to having some questions answered when i get my appointment through. I hope it is soon.

Maybe this “new evidence” will help my DLA appeal as well… fingers crossed!

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