Newbie

[targs66]

hello -

I am a newbie, so please bear with me! I have about a million questions but think I need to start with an intro.

I have had what has been called chronic fatigue for years. It was manageable - exhausted all the time, but I could work a very high pressure job by avoiding everything else (social life, activities, etc.). I had a hysterectomy in March 2007, and feel as if I've gone downhill ever since. (I am on HRT, as they removed my ovaries.) I started getting "dizzy spells" about a year after the surgery, and then they became constant.

I am American but live in the UK, and there is very little help I can get from the NHS (I don't have private insurance). I spent most of what was left of my savings last fall to visit Johns Hopkins, where i was diagnosed with neurally mediated hypotension. I've been prescribed midodrine. In some ways it has helped immensely - I've been able to go for short walks again on "good" days - but I can't get any consistency. For example, I've been feeling pretty awful for the last few weeks (dizzy, weak, utterly exhausted, confused, anxious, and so on) and the midodrine doesn't seem to make a difference.

I think I will leave it at that for now. I'm so glad I found this site. I welcome any comments/ suggestions about how best to navigate this forum. I'll read what I can on the site and then start the questions!

all the best,

targs66

[Sarah4444]

Just wanted to say hi and welcome. Wish I had some answers for you, but you've probably realized how complicated this is. I went downhill for years and ended up bedridden for several months last year. I am doing better than that now, but nowhere near normal. I have gotten a small boost from each of several things listed below. I would add that water exercise has helped a lot, but I am not well enough to travel daily for it.

Rest and keeping life as simple as possible are helping as well.

[Chaos]

Welcome to our dysfunctional family! Glad you found us.

I had a hysterectomy in 2007 too. I think I've had these issues for a long time, but the first time I became really incapacitated by the symptoms was after my hysterectomy.

The meds I'm on have helped a lot, but they haven't been a cure by a long shot. I am fairly functional most days now. Still have "good and bad days". My "new" normal is not anything like my "old" normal, but I'm just thrilled to be able to work part time, stay out of bed most days, and have my symptoms fairly well controlled most of the time. However, every time I get sick with a virus, have dental work, have surgery, etc...I get a huge flare of symptoms. My cardiologist told me yesterday, "we just need to make sure you avoid your triggers." Nice thought but most of my triggers are things I can't really control.

Anyway, hope you find info that helps you here, or at least eases your mind that you're not alone.

[Sallysblooms]

I don't know if there are any good integrative doctors there, but in the U.S. there are doctors that understand the value of supplements. I hope you can find someone so you can get your body as healthy and supported as possible.

[targs66]

Thanks, all! Like I said, it's a real relief to find all this information - and informed people - in one place.

[E246]

Hi,

you are not alone.

I am new - posted for first time last week and i have lots of questions too.

I live in northern england and as far as i understand there are 2 -5 specialist nationally. Luckily one is in Newcastle's Royal Victoria Hospital ( Professor Newton) where there seems a good awareness of POTS. I am seeing her for the second time today - have only been diagnosed for 5 weeks. Like you I have been on HRT and have been trying to find out - if I go back on it will it make it better or is it the HRT that maybe exacerbated it.

My main symptoms are fast pulse and chest pain. It all started after having a coil 7 years ago.

This flare up happened in November just before the snow. I have not yet found anything that works - it seems very random. Water is the only thing that lessens some of the symptoms. A glass of wine lessens the chest pain but increases the pulse.

Thought the info on another post about Hughes Syndrome is very interesting. At first glance I was not sure but then having thick blood that has little oxygen seems to make sense.

Anyway - good luck.

[targs66]

Thanks, Emma! I've got an appointment with my GP next week. He has been useless so far (recommended that I try taking up swimming when I explained that I was too weak and dizzy to even manage a trip to the grocery store). I only got my diagnosis last fall when I went to my parents' house in the States and saw the docs at Johns Hopkins. I'm hoping that my GP will finally get on board (that is - stop treating me as if I am just a mental case) now that I have a "legitimate" diagnosis. I may ask if he'll refer me to the Newcastle doctor. However, I don't have POTS; I've got neurally mediated hypotension (along with many of the other debilitating dysautonomia symptoms), so I'm not sure whether they will see me. I hope so - I've used up my savings on the Johns Hopkins visits!

Thanks again for the advice.

p.s. I also wonder about the HRT connection. I often think it has made me worse overall, but I became menopausal overnight (hysterectomy) and have found the menopause symptoms completely unbearable. Please keep us posted about what you find out.