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New from the uk


sallyB
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Hello to everyone.

I have been ill since 1999 with ME/CFS, and this week had a positive tilt table test and have been diagnosed with POTS. i have been reading all the imformation and posts, and the symptom list could of been wrote for me. The doctor has started me on a beta blocker called metoprolol 25mg a day and to increase it to two a day, which I tried and felt dreadful. Have many people on this forum have a diagnosis of ME/CFS as well. I feel as if I have been on a rollercoaster since this illness and have tried everything to get well again, so finding this site has been great, at least i know what POTS is as my doctor didnt explain it very well. So once again hello, and I hope everyone is doing as best as they can today. Sally.

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Hey Sally

Welcome :D

I know what you mean about the beta blocker, I went through several different ones before I found one that worked for me. Just keep your doctor informed of what is going on with medications.

There is literature somewhere that at least 1/3 of CFS patients are POTS patients. The two diagnosis over lap.

Steph

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Hi Sally,

Welcome! I know there will be a couple of UKer's that will be excited to greet you!

I had a similar expereince to you. My doctors found it easier to focus on my pain and label that. So I started with a diagnosis of ME/CFS. But I wasn't content with this so I kept searching and found a doctor willing to look for the cause of my CFS. Luckily, he was familiar with POTS and found that's what I had. Unfortuneately, he was also ready to retire so I am having a diffiuclt time finding anyone to help me with it.

As Briarrose said, there is a lot of research evidence that many people with CFS have POTS. I am glad that you too have been able to narrow the cause of your fatigue and hope you can find some help.

My first beta blocker made me more exhausted and lowered my BP even more. But there are several choices in beta blockers so don't be afraid to talk to your doctor about the options.

~Roselover

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B) WOO! another person from the UK! :P

It's great to meet other British people, as we seem quite few and far between. <_<

Greetings, welcome and hello! Good to hear from you, and glad you decided to introduce yourself! :lol:

I'm Persephone and I'm 23. I graduate in two weeks from St Andrews, and I'm going to Oxford for a postgrad in October :blink: . I live in Bristol.

I've had POTS quite badly for about 8 months now, but it looks as if I've been having symptoms from the age of about 11 or 12 :o I also have Vasovagal Syncope and Ehlers Danlos (III), a connective tissue disorder that means my joints are slack and I get quite achy. :( On a bad day my pulse does 180+ or 30!, and my bp can do either 200/150, or 70/40! As you can see, I'm a lady of extremes! ;) I am quite stable now though- avoiding stimulants, following a vegan wheat free diet and making sure I walk each day and use the gym whenever possible is making a huge difference. I ended up in a wheelchair I was so ill 3 months ago. But now I'm heaps better! I'm still unable to work, but I'm determined to take up my place at Oxford in October. I'll go if it's the last thing I EVER do! :D

Did you get diagnosed by Prof Mathias in London? H3e's the only UK expert on POTS. It took me ELEVEN years to get diagnosed as I was always told "some people just faint, and you're one of them." :angry: At least I have some answers now though- what a relief! :)B):rolleyes:

What's your story?

Hope to see you posting often here. Glad you have found us, and hope we can help you the way this group has helped, and continues to help me. I'd be completely despairing if it weren't for the POTSPLACE folks :rolleyes:

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Hello,

So I know there are 3 of us in the UK now posting here, welcome! I only started posting last week. I'm Felicity, 36 yrs old, in Dunblane. I was diagnosed with POTS by Dr. Grubb in Edinburgh in November, after only a year of problems. I too have a very wonky heartrate, ranging from dead (only once thankfully, and I was in hospital at the time, doing some tests which I didn't respond to too well :)) seriously I will drop to about 30 very occassionally, usually over 100, up to around 220. I don't have anything but POTS as far as I know, so I can't help you there, but I have tried quite a few beta blockers + others both before and after the POTS diagnosis.

My experience, and experiences obviously vary hugely, were that bisoprolol (sp?) and atenolol both may me feel totally fuzzy, and did such bad things to my heart that they won't try any more beta blockers. Verapamil sent my heart into a roller coaster, where it would sit around 200 - 220 (even when sleeping), then plunge, then soar again. I was hospitalised during this until they realised it was the drug. Fludrocortisone gave me really scary cramps and didn't do any good, and an anti-depressant didn't help and I put on a pound in weight every 2 days! Hopefully you'll get on better than this, I personally feel much better without any drugs than with any I've tried so far.

The good news is that it seems a lot of people have made improvements by adapting their lifestyles. I'm still working out what I can and can't do, but reckon I can live with this quite tolerably, if I behave well!

Felicity.

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Sally, I wanted to add my welcome to the forum.

I had trouble with BB also and in the end, they didn't do enough good for me to continue. Hopefully you can find something that works for you. We are all so different in what med helps that unfortunately it is usually a try and see approach.

hope to learn more about you in the future!

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Many thanks for the welcome,

I am still reading all the imformation amd posts and learning from you all. as i am mostly housebound, the internet and forums like this have saved my sanity!!! I am 40 years old and used to be a florist before this illness took over. I am seeing my consultant next month, so I will be going armed with loads of questions, thanks to this site. take care everyone. sally B

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Hi Sally,

I just noticed that I didn't welcome you. So here is a warm welcome from the Netherlands. You'll find a lot of answers here and (as important, in my opinion) a lot of friendly and warm people, who understand what you experience. If you have any questions, feel free to post them, that's what we all do :)

Corina

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