orthostatic intolerance

Discussion in 'Fibromyalgia Main Forum' started by AngusS, Jan 18, 2007.

  1. AngusS

    AngusS New Member

    I was diagnosed with CFS in 2003. Up until fairly recently I was making a fairly decent recovery, but then I had a relapse a couple of months ago. This time I have acquired a new symptom, postural orthostatic tachycardia, and it's hideous.
    Over new year I was bed-riden with it, but my doc prescribed fludrocortisone and I can now sit up. My question is does this symptom ever get better with time or am I stuck with it? I would really like to hear of other people's experiences who have POTS. Many thanks,

  2. nightngale

    nightngale New Member

    I have this also! I am too tired to write any more now but here is a great site. I will write more later. I take a beta blocker as my heart would race and my bp went up. So many weird symptoms. Here is a good website: http://www.potsplace.com/ . THat is where I found out everything I know and self dx myself before finally getting a dx from a good doc. Good luck.

  3. Hope4Sofia

    Hope4Sofia New Member

    AND Orthostatic Hypotension. It is miserable. I'm currently on Toprol XL but it's not doing enough. I black out all the time. I'm very uncomfortable standing up.

    Lately, it's been accompanied by dizziness and nausea.

    I've been told to drink a ton of water.

    I'd love to hear some good input on this topic as well. I'm wondering if this is where the fatigue comes from.

    Do you also have mitral valve prolapse?

  4. TinaJones

    TinaJones New Member

    I have POTS - but wasn't diagnosed until a few months ago - after suffering for several years with symtoms. Wish I had more to say about it - because I'm just now learning all about it, too. I'm on Cardzium CD to try to "sandwich" my heart rate where it should be (BP, too) but my heart is breaking through it. So, I know I'm probably going to get my meds changed.

    I'm curious how people here got diagnosed? Did you do the tilt-table? My diagnosis came via doing the holter monitor for 48 hours and my symptoms - and a very good doc. I am doing the tilt table test in a month or so - to get a better read on everything.

    I have may WEIRD symptoms, too. But I'm off to bed because I'm exhausted - will write more tomorrow. Thanks for bringing this topic up. I'm hearing of more and more people with CFS/FM that have autonomic nervous system disorders - like POTS. --Tina
  5. AngusS

    AngusS New Member

    Thanks for the replies everyone. I'm sorry to hear that you are all having a bad time with POTS too. I haven't had an official diagnosis yet, just a preliminary one based on the obvious symptoms that when I stand up my heart rate increases more than 30bpm and the longer I stand the higher it goes.
    I've found loads of useful stuff on the web about POTS and actually persuaded my doc to try water, salt and fludrocortisone on the basis of this info. As I said, the treatment is working to some extent. The best info I found was in this article www.pediatricnetwork.org/medical/OI/johnshopkins.htm
    I've read the stuff at POTS place and it's good too. What I can't find out is what the prognosis is for people with POTS and even better what about CFS patients with POTS? There's no info at all. I guess that's why I was wondering whether anyone's symptoms had got better with time.
    I've got an appointment with a cardiologist soon and I'm going to be fitted with a 24hr heart rate monitor. I don't know if they'll do a tilt table test. It seems like an obvious test, but here in the UK you can't always guarentee that you'll get decent treatment. I'm hoping they'll understand the condition and help me.
    The overlap between POTS and CFS symptoms is quite astonishing (fatigue, muscle pain, exercise intolerance, brain fog, headaches). At the moment I can't work out if I feel so dreadful because of the POTS or the CFS or both. It's all very confusing.
    Anyway I've written enough now and need to have a lie down. Please keep posting with your experiences of POTS and what helped you. Thanks again,

  6. Hope4Sofia

    Hope4Sofia New Member

    Mine was diagnosed with a tilt table test. My BP dropped to 50/30 and my heart rate was up over 140. I've never felt so sick in my life.

    My BP is usually quite low to begin with (95/55) so I struggle a lot with energy.

    I would love more answers on treatment. I'd give anything to feel better than I do.

    Does anyone else feel dizzy and nauseous a lot??

  7. Hope4Sofia

    Hope4Sofia New Member

    I loved the link to that website on NMH/POTS. I found it to be very helpful and informative.

    I hope you don't mind but I reposted the part on exercise for the rest of the folks to read. I think it's usefull.

    I plan to discuss a lot of this with my Dr.

    Can I ask what type of Dr you are seeing for treatment of this prob?

    I was diagnosed by my cardiologist but my Neurologist is the one who suspected it and sent me to her. He is much more tuned in to me but I don't know if he can treat this prob.

    I have an appt with him but not until next month---UGH!

    Anyway, Thanks again!!

  8. mezombie

    mezombie Member

    I had a positive tilt table test and was diagnosed with dysautonomia. Since then I've had docs call it OI and even POTS. They are so interrelated!

    Anyway, beta blockers did nothing for me, but I responded well to Florinef for a while. Then that stopped working and I went on Midodrine. Now I am taking both together and that's been helping for at least two years now.

    Keeping one's knees elevated helps. A lot of people use footstools for this. If you have to stand, shifting your weight from one leg to the other helps.

    Another helpful on-line source is:


    You will need Adobe to read this, but it is free to download on the site if you don't already have it.
  9. lnw3602

    lnw3602 New Member

    was when I was about 12. I thought I was gonna die and didn't tell my parents. When I got up everything went black, I had to hold on to something so as not to fall. It has been happening everysince (I'm 47) One doctor told me a long time ago that when I fell and broke something because of it, make another appointment. Neurologist. So, I thought this was common. Mine does seem worse in the hotter months. Never got a dx on it though. I'll add that to my list.
  10. AngusS

    AngusS New Member

    I don't get the drop in BP when I stand up so I don't tend to get blackouts and I haven't had problems with nausea. I think these symptoms are more commom in people with NMH. I did once try to push myself to find out what would happen. I stayed standing still for 20 mins (a bit like a tilt test I suppose). My heart rate went up to about 130 bpm and I felt like I was getting a massive adrenaline rush. I was sweating profusely, really agitated and towards the end very confused. Afterwards I suffered from profound fatigue and muscle pain for several days. It's a experiment I don't want to repeat in a hurry.

    The fludrocortisone/water/salt is helping a lot. I can walk about a bit now. I'm hoping that it's not going to stop working. My doc did put me on beta blockers for a bit but I came off them. Although they controlled my heart rate they made me feel dizzy and more fatigued. I'm going to try to persuade my cardiologist to try midodrine. I've read a lot of good things about it.

    Sofi in answer to your question at the moment I've only seen my general practicioner. He's very good and takes a particular interest in CFS/ME. He helped me sort out my sleep problems 2 years ago. But he thinks that I need to see a cardiologist to get a proper diagnosis and decent treatment for POTS. I've got to wait another 3 weeks for an appointment. I've already waited a month, so I completely understand. It's so frustrating when you know there's help out there and you desperately want to get at it.

    Thanks again for all the posts. Everyone's replies have been really helpful,

  11. LonelyHearts

    LonelyHearts New Member