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Thanks so much Chaos and Mack's Mom. Chaos, I can't work out whether it's the highs/lows/or changes in barometric pressure that affect me, but I've noticed that whenever the day starts to heat up to over 30degrees celsius over here all my POTS symptoms ramp up, and particularly my shortness of breath. When it starts to cool down again, the breathing issues seem to flare up again. I don't know how I'd do living at over 5000feet. That would be a challenge! Thanks for the reassurance Julie. I am hoping that I'm just undermedicated at the moment due to the flare up and that things will settle down again soon. My doc thinks I probably had a cold last week as my lungs sounded a bit rattly. Perhaps that caused the recent flare up.

I have been taking Singulair (2 to 5 year old's dose) for the past 5 or so weeks and upon taking it immediately noticed an improvement to both my shortness of breath and the usual chest pressure I experience daily. I even caught myself singing! during the day (which hasn't happened since I developed POTS). Granted it wasn't my old diaphramatic singing, but still, it was better than not being able to sing at all due to chronic shortness of breath. Over the past week and particularly today my shortness of breath has returned with today being like the bad old days and the chest pressure being the worst it's been for a long time. Last week was a wierd week weather wise. We are meant to be in the middle of summer here, but we were having Spring like conditions. Is it possible for this mast cell med (leukotriene inhibitor) to stop working and for the body to get used to it? Do those of you taking mast cell meds have to keep increasing them? I hope this isn't the case. Also, do those of you with breathing problems notice that changes in barometric pressure affect your breathing? Or is it the highs or lows that affect you?

Alex, not sure if it's the same thing, but I experienced HR spikes initially while on Florinef. I noticed this several times during exercise. I found my HR was doing in excess of 140BPM, sometimes in excess of 160BPM during exercise where my HR would normally be around 120-130BPM. This freaked me out. I hadn't lost any fitness at that point. None of the medical people could explain this, but my naturopah (who is very biased against steroids) told me that some of his clients had complained of HR/BP spikes while taking Florinef. I'm still taking Florinef but have been too afraid to do the hill climbing I was doing before which is when the HR spikes would happen. For 18 months prior to taking Florinef I never experienced such high HR's during hill climbs.

interesting that one of the herbs used to treat POTS mentioned in that article is Aconite which was included in a Chinese herbal formulation prescribed for me. Unfortunately I can't access it (unavailable where I live), but I've heard it can do wonders to help.

Thanks for sharing Rich. I used to drink a green drink made by "Nudie" that had spirulina in it before POTS. I used to have great mental clarity after it and it definitely helped with my energy. Does anyone here use spirulina and has it helped with POTS?

Greying out (visual distubrance where grey dots increase and start to block out my vision), faster and faster heart rate, ridiculous shortness of breath, a feeling I am about to loose consciousness. I have urge to keep moving no matter what, or lie down otherwise I will faint.

Hi Naomi, my mother had a very severe form of psoriatic arthritis for just under 2 years where her body's immune system went into hyperdrive and was attacking her. She's had psoriasis for years leading up to this but only developed the extreme form a few years back. In her 30's she got the exact same symptoms I did when I started sliding down the slippery slope towards POTS but for some reason hers never developed fully into POTS like mine did, and instead she's suffered a few of the aches/pains related to arthritis. Makes me wonder about the genetic and autoimmune implications for this disease. Interesting that some of us have the auto-immune flares separately to our POTS flares.

I have quite a few and have had them for at least 10-15 years. I only got POTS 2 and a bit years ago so not sure it it's related.

Amazing! Wow! That's fantastic! What great sons you have!

Dani, I am exactly the same. Last scary movie I watched was Shutter Island. Quite a scary, suspense movie. Bad idea! I had tachycardia all night until 6am after watching that. Was feeling great until after the movie. I'm relieved to know I'm not the only one who suffers with this!

I've found homeopathy almost as effective as western medicine however as Issie said, it is a lot of trial and error unfortunately before you hit the right remedy. The other complication is finding a good homeopath who is prepared to work with you even when you don't seem ot be making progress. I found a great homeopath who has now moved and was also starting to get frustrated with me as i wasn't improving as quickly as he would have liked.

Annaliese, it sounds almost like you are doing what Qi Gong practitioners have been doing for centuries, but instead of imagining the blood flowing to the feet, they instead imagine/visualise "Qi" energy flowing from the Crown chakra all the way down through the body to the feet and then out of the body. I have always had cold extremities and when I used to practise Qi Gong my feet and hands always warmed up just like you describe. I also felt the healthiest I ever have been in my life, but now with POTS I seem to have lost the mental discipline ability that I used to have. Plus a lot of Qi Gong is done standing still and that just makes me feel worse these days! Probably the only type of meditation I can do anymore is sitting meditation.

Just on that point Katybug, I've observed that I have better standing time doing Tai Chi than I do if I'm just standing and shuffling about the house. Like Progressive Muscle Relaxation, it also focuses on the contracting and relaxing of muscles but it works the entire body all at the same time. I've found that on a bad day, if I do my Tai Chi in the morning I sometimes feel better, even significantly better, both during and after doing it. It seems to normalise my blood pressure and even has occasionally lowered my heart rate in a way that normal exercise can't do. There are some studies that show that patients with (I think) Congestive Heart Failure were able to increase their capacity to walk when they practised Tai Chi over a 3-4 week period compared with the same type of patient group who didn't undertake Tai Chi practice. I think there's a lot more to meditation and Tai Chi that medical science can learn from.

My goodness Serbo! A house blowing up nearby and shaking the earth would be enough to scare even the toughest soul, and would send anyone with Dysautonomia into a massive adrenaline surge. Hope you have recovered okay since this incident?

Since it's related to your diaphram, have you noticed whether your breathing has been impacted? Sounds awful. If my diaphram was cramping I know my difficulty breathing would be compounded.

Do you get the ones that come right when you are just about to fall asleep and zap you awake? Those really stink! That was the first clue I had before my daignosis that it was not anxiety because there is no way you can be falling asleep and having a panic attack. Yes, I get them just as you describe just before I am about to fall asleep. It is so frustrating to say the least. And it happens over and over again all night long... I will become so exhausted from the constant tachycardia that my mind and head are ready to sleep, but my heart does this kind of wierd rhythm like thump and it zaps me right awake again. I usually feel like death the next day. So awful!

I've also wondered Julie if like attracts like. When I first met my husband 10 years ago he had very strong symptoms of Chronic Fatigue Syndrome but was never officially diagnosed. I could never truly understand his lack of energy when I had so much and could go, go, go all the time. Now I have POTS I truly understand what he was going through. He is also extremely flexible as is his mother, so I am positive they have some kind of connective tissue disorder which accounts for their bouts of ill health, CFS like symptoms at times, and general fatigue. My mother is currently doing genealogical research which I have been helping her with. We are trying to order in death certificates to see cause of death. We are looking for anything such as "neurasthenia" as we're trying to explore whether there could be a genetic basis for my POTS. Unfortunately they didn't seem to put general health complaints in death certificates in the past, only the actual cause of death which is often heart attack or some kind of acute illness.

I am just like Dani, I notice them mainly at night when I've stopped activity for the day. They usually happen if I've over-exerted during the day. I had one last night for the first time in a while. Mine go on all night. Heart rate is fast and/or pounding and I can't sleep.

Thankful, that's wonderful news that you are adopting. I had a question for you and all those other parents out there.. How did you go about broaching the subject of needing some support from friends and family with raising a child? I wouldn't know how to broach this subject. My friends may be able to help in an emergency, but being bedridden and needing help on a daily basis is another thing. I doubt many people would come to my aid on such a constant basis.

Oh no Rama, sorry to hear that. I gathered you'd been doing pretty well for a while there. It is so frustrating and can be such a cruel turn of fate when all is going well and then, bang, POTS rears it's ugly head again in the middle of what feels like a pretty stable life...and especially cruel when you've done nothing to bring it on. Very frightening... I know you've had this illness for a long time, longer than many of us on this Forum. I hope it's just an aberration and you go back to being your normal you again.

mwise, thanks for much for sharing and congratulation too by the way! Did you have Dysautonomia and were you symptomatic before you had kids at age 40? I am in my late 30s and POTS hit me shortly after I got married to my husband. We both want kids but not sure if it is possible now (the usual fertility issues might be creeping in). Plus my POTS is not abating with time unfortunately. Such a hard decision to have to make...

One of my POTS specialists insists it's "just POTS" and there is nothing anyone can do for it. The other POTS specialist I have seen thinks that more than just a little SOB is definitely something that should be investigated further as in his opinion the vast majority of POTS patients do not experience the severe SOB that I do periodically. I've had to take matters into my own hands and request referrals to others after my POTS and respiratory physicians have added little value.

That's great news Christy that your son has been able to stop Florinef without the dizziness returning. I hope this improvement continues. I am slowly tapering down at the moment because Florinef is causing significant potassium loss the longer I take it which I suspect is exacerbating my breathing issues. In answer to your question Igail, Florinef made a huge different to my daily light-headedness and pre-syncope. I suspect it helps because I am hypotensive and probably also suffer lack of blood flow to the brain like most other POTsies. It has increased my blood pressure and blood volume which I think helps me feel not as faint or light headed. It's also helped lower my resting heart rate a little but by the same token I also seem to have experienced much higher heart rate "spikes" since taking it (again, probably an electrolyte/potassium loss issue).

Thanks so much Rubytuesday. You mentioned that EDS 1 (the classical type) is the type where people often aren't hypermobile. I've never been hypermobile in my life and to date I haven't suffered from aches and pains. The only pain I ever experience in my joints, back or neck is when I sprain them by accident - and this happens very rarely. I wonder if EDS1 would still be a possibility for me? Suppose I should try and see a Rheumatologist or Geneticist to get it ruled in or out given my current POTS specialist is **** bent on diagnosing JHD with all of his POTS/CFS and dysautonomia patients!

My POTS specialist believes all POTS patients have joint hypermobility disorder. I think he is outright wrong and have expressed reservations to him openly, but he is very dogmatic about it. Because of his theory, he believes I must also be hypermobile even thought I cannot perform any of the tests he wanted me to succeed in (touching tongue to nose, flexing thumbs back to touch forearms, placing palms flat on floor without bending knees, etc). Which leads to a rather obvious but stupid question.... is it possible to have JHD or EDS without being hypermobile in our joints?? Say, with vascular EDS?? For example, could we simply have hypermobile connective tissue in our organs and blood vessels but this NOT be present in our joints (elbows, knees, etc)???