Dizziness/POTS questions

[SilverRose88]

Hello,

I've not yet been diagnosed with POTS but I wanted to ask anyone who suffers from it some questions and whether the symptoms I'm experiencing could be POTS?

Obviously I have tachycardia and my BP is fairly low (ish) and HR rises upon standing

Example:

Laying: 94/54 Pulse 64
Standing: 113/73 Pulse 104

But the questions I wanted to ask were regarding my dizziness, ever since I've been ill I get a head rush feeling/dizziness when turning over in bed, I find baths make me very dizzy, I guess it's all the moving about and changing positions (?), I also find noisy/busy/bright light environments make my dizziness A LOT worse, and I also feel very 'weird'. I have to use a wheelchair due to my exhaustion and dizziness but find it more bearable to cope with the symptoms when I'm moving along in my wheelchair, for example if I stop and we (my Mum and I!) have a coffee somewhere, I find it very hard to sit still because I feel like passing out/feel v dizzy. Along side all of this I have the usual 'ME symptoms', I have reflux and bowel troubles, shortness of breath, dizziness, palpitations, pains in chest and obviously severe exhaustion.

So are these symptoms and things that make my symptoms worse a sign of POTS or is this just an ME thing?

Any help would be greatly appreciated.

Thank you, Bec

 

[glenp]

dysautonomia

There is a thread on dysautonomia here

http://forums.aboutmecfs.org/showthread.php?4147-Dysautonomia&highlight=dysautonomia

Food sensitivities and niacin can affect it, and some antidepressants can cause bp to go up

 

[Marg]

Any help would be greatly appreciated.


Hi Bec,

It sounds like POTS to me! I have it but the high bp kind. Yours will be esier to get under control. I think mine is finally. Have you tried the electrolye dink..1/4 teaspoon sea salt...1 tespoon potassium choloride...1 cup filtered water...and 1 small bottle club soda...some people add stevia but I don't bother. You could drink all you want or to the point of felling better since you have the low kind. it is very important to have the salt and the potassium balanced. I mix up a couple batches in a picher. I don't know if you hvave Gatoraide there but the new G@ kind woud work as well. It has the least sugar but it still has coloring and such things we don't need. I use it for convienience. The other is pure though.

Yes to the bright light and noise.

The sun bothes me a lot and will make me dizzy and heart will race so when you are put if you are in the sun that could be making you feel sick. Nusea has always been a problem but that is gsrtting better.

Hope this heps. Go to www.oiresource.com there is a lot of information there. Some people wear comprssion stockings, I did not see that they helped me, I do have a little pooling around the ankle bone.There is a site that sells them www.aneswalker.com. I think that is it Google compression stocking if not, you could get a pair and give it a try. I got the thigh high ones but they also come in panty hose type to prevent pooling in the stomach.

Hope this helps. I know the salt solution drink will. I also drink a lot of other water, since I have low blood volume and I bet you do too. The salt will help retain the water helping that.

I had a tilt table test to confirm it by a bp log of a week showed the picture. Yu nubers look like you have the low bp kind.

There is allo a lot about POTS on YOU TUBE.

 

[ahimsa]

I don't have a diagnosis of POTS (although I may have it now after 20+ years of this illness...) but I do have a diagnosis of another type of Orthostatic Intolerance (OI) called Neurally Mediated Hypotension (NMH). I passed out after 20-30 minutes on two separate tilt table tests, just by standing, no isoproterenol or isoprenaline was used. [ Why two tests? Well, only the first test was actually necessary for my diagnosis. The second one was needed to fight for long term disability benefits because of the evil ERISA laws. In fact, I got social security disability on my very first try because I had very strong medical records. But fighting to get my LTD benefits which were covered by the ERISA laws....well, that's another long story.]

Anyway, getting back to your question, my symptoms don't overlap completely with yours but I do get dizziness, shortness of breath, and chest pains. Nausea and feeling like I'm going to faint are the symptoms I hate most. For me, standing and heat are my worst triggers. So, hot showers are the worst. And hot baths would be bad for me, too. Now I have a shower seat and make sure the water is not too warm. Also, sitting upright for too long can also be a problem so I try to keep my feet elevated (either lying in the recliner or sitting cross-legged with my feet tucked under me).

Both types of Orthostatic Intolerance (POTS, NMH) were discussed in one of the CFIDS Association of America's webinars not too long ago. See the file http://www.cfids.org/webinar/cfsinfo2010.pdf for lots of details. If you want to see the video of Dr. Rowe's presentation it's here - http://www.youtube.com/watch?v=5iF30TVLaRE

It can be difficult at times to figure out what's causing symptoms but I hope this information is helpful. I agree with the others that trying some of the simple remedies, like increasing salt and water, is worth a shot. It also helps me to drink ice water when I get overheated. Caffeine can work for some (it's a mild vasoconstrictor) but for others it doesn't help at all. It helps me a little bit (not nearly as much as the prescription vasoconstrictor, midodrine) but others have reported that it makes them worse.

Hope this helps!

 

[toddm1960]

Just to point out the two very different types of POTS, I have orthostatic hypertension and one thing I have found helpfull is high doses of niacin. I over constrict while standing, my pulse pressure closes and my BP and HR continues to rise. The niacin helps dialate me alittle and keeps my HR and BP from climbing as high. I take 1,500mg per day of the timed release. Just another example of why one drug will help half of us and hurt the other half.

 

[Sallysblooms]

Do you get any side effects like flushing with the niacin? I have the same problem, POTS with high BP. I take a med,but it isn't helping enough.

 

[toddm1960]

I flushed alot with my POTS so it's only alittle more than normal, same with the hot flashes. If things work out I'll check into Niaspan. So far my HR only increases by 30 when standing, it had been much higher. My BP hasn't gone as high and my pulse pressure didn't narrow as much. I can be on my feet alittle longer, but it's too soon to say if it's the niacin that's doing it or I'm just in one of those waves right now. I hope you find something that helps.

 

[Sallysblooms]

Yes, I flush with POTS for sure. I just wondered if Niacin made it worse. I have heard of non flushing niacin. High BP is not good.

 

[toddm1960]

The non-flushing form of niacin (niacinamide) doesn't help, it won't vasodilate. My flushing or hot flashes aren't much stronger at all, and the longer you use niacin the less you get the flushing.

 

[icalla]

Another question: Is it helpful to actually have this diagnosed? I have a lot of the symptoms, and I know it's common in CFS'ers. I always thought it was just part of... but from what I'm reading here, it's a bit separate.

I'm wondering now whether to bring it up with my GP and try to either get a dx or rule it out.

 

[Sallysblooms]

It is very helpful to diagnose it. I take specific supplements for the nerves themselves. Alpha Lipoic Supreme and others. I have my heart rate monitor watch to watch for that and a good blood pressure monitor to keep track of my bpressure. It used to be very high and it is improving as I improve.
Most Gps have not heard of POTS but you can find good integrative docs to help.

 

[taniaaust1]

Another question: Is it helpful to actually have this diagnosed? I have a lot of the symptoms, and I know it's common in CFS'ers. I always thought it was just part of... but from what I'm reading here, it's a bit separate.

I'm wondering now whether to bring it up with my GP and try to either get a dx or rule it out.

It certainly could be helpful to get diagnosed for two reasons 1/ So you can try to treat the POTS. Treating the POTS can help quite a few CFS/ME symptoms.
2/ If you arent on disability and need to get it, the more conditions you can add to your forms the better.

 

[TinyT]

I agree also that getting it diagnosed is helpful.

- trying medications & management strategies might make you more functional, even by 5% is great
- knowing what exacerbates your OI/POTS and avoiding it (eg. Being hot, standing, certain types of meds etc)

I also wear a heart rate monitor set to alarm at 110bpm, avoiding being tachycardic helps my fatigue some. I also check my BP twice a day (it's low normally)

 

[icalla]

Thank-you. That all makes a lot of sense. I will talk to my GP next time I see her.

 

[Sallysblooms]

Unless you have an integrative doc, he or she may not have heard of POTS. My reg. docs have never heard of it.. Maybe you can take information with you. Print some out.

 

[ahimsa]

I agree also that getting it diagnosed is helpful.

- trying medications & management strategies might make you more functional, even by 5% is great
- knowing what exacerbates your OI/POTS and avoiding it (eg. Being hot, standing, certain types of meds etc)

I agree with you 100%, especially about that second point. Avoiding those situations which trigger symptoms (I have NMH, Neurally Mediated Hypotension) has been one of the most helpful things for me. It also gave me some small sense of control to know at least some of the reasons that my symptoms got worse. There are still some seemingly random "crashes" BUT I'm still a lot more stable than I was before I knew about the NMH.

For anyone who needs a handout for their doctor here's a link to the patient handout from Johns Hopkins:

http://www.cfids.org/webinar/cfsinfo2010.pdf

My experience has been the same as others on this thread. Most doctors know nothing about any type of Orthostatic Intolerance. I was seeing a GI specialist for some stomach problems last year and he asked me why I was taking midodrine and fludrocortisone. I said that I had NMH, a form of OI. He said, "what's that?" I had prepared for this (assuming that he would know nothing about OI) so I handed him the Johns Hopkins handout.

So far, it's par for the course, no big deal. But then his next comment was, "how did you get it?" I just stared at him in shock and said something like, "I haven't a clue!"

I mean, really, what a question to ask me. If all the experts don't even know the answer to that question how in the heck is the patient supposed to know? I should have said "see page 4 of the document that I just handed you, it says that doctors don't know what causes it" but I just wasn't in the mood to be snarky.

Edited - Oops, I see that I already posted a link to the Johns Hopkins handout in an earlier message on this thread. Oh, well, I guess an extra link won't hurt!

 

[TinyT]

Good handout! Thanks for the link, I'll be sure to use that one.

I'm still waiting on the official results of my tilt table test, BUT I asked the supervising doc and my heart rate went from around 80bpm lying flat to over 150bpm after head up tilt.

This doc told me it was a 'normal' response?!?!? What a Nuptie!

Diagnostic criteria for POTS: HR increase of more than 30bpm when standing &/or HR more than 120bpm within the first 10mins of head up tilt.

 

[icalla]

Thank-you for the handout - very informative for me, my parents, and most likely for my doc. I wonder if my naturopath would know more, as she specializes in CFS... Anyway, thanks!