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Everything posted by Tanzanite

  1. I posted this topic years ago about how Pseudoephedrine helped me feel pretty much normal again. I found this out quite by chance when I took it for a sinus problem. I ended up experiementing wih taking half a tablet very early morning and even that small amount did the trick for me. At the time though I didn't have issues with tachycardia so not sure how I would respond to it now. I have both swings between Brady and Tachy. Perhaps I should ask my Doc if I can try using it again to see if it helps. Some specialists do use it for POTS.
  2. I get my whole body vibrating inside, usually at night when its taking me a while to fall asleep. It's POTS. I have EDS and never got it until my POTS really started.
  3. I've been registered here years and used to post quite a bit then stopped coming here apart from having a quick look now and then to see if there had somehow been a miracle cure in the meantime I didn't know about lol Anyway, yes I started with tachycardia ALL the time even laying down. After getting a flu type virus a few years ago by heart rate fell to anywhere between 32-50 and constantly fluctated between the two. Strangely I had no symptoms even when my pulse was at 32, my Dr said unless I was passing out they wouldn't do anything and I just had to get on with it. I still now get times of very low pulse and it fluctuating all over the place but do get periods of time where it's around 70 (where it should be!) and of course some times I get tachy too but my POTS has definitely changed in recent years.
  4. The broken blood vessels are likely to be from the force of coughing/choking. I guess everyone is different, there are times I can go without one for days, then some days I'm having them every few minutes. Probably worth bringing it up with your specialist because there is some kind of treatment, such as being taught breathing techniques from a speech therapist to help relax the vocal cords especially when they start to spasm and close up when you're choking. Not sure if it would be connected to the thoracic outlet syndrome. I have heard this VCD can be connected to autonomic nervous system problems. Be warned though, it happens more in people with anxiety problems so you may get fobbed off with that diagnosis! Don't let them do that!
  5. Yes, that awful noise is called stridor. It sounds very much like what I get. Look up vocal cord dysfunction.
  6. It helps me BIG time. My specialist told me there is recent research to show it helps with POTS and told me to take 500mg a day. I don't take quite as much as that but since taking around 300mg a day, I have had more energy and been able to do more, it has stopped the heavy dragging feeling from my chest downwards and even helped my breathing when I do anything physically.
  7. My energy levels got a bit better. My so called IBS symptoms went and the constantly cracked corners of mouth went.
  8. In the past 18mths since I had flu, I've had low heart rate for the first time. Around 32bpm and constantly going from 32 to 55. I had no symptoms with it and because of that the Dr said not to worry about it. I still get it sometimes especially when very tired, stressed or ill.
  9. I get choking fits galore, on nothing, on drinks and eating, if I overdo it and feel exhausted, stressed, you name it. I can have LOADS of choking/coughing fits a day. I often heave, have tears run down my face, and vomit. Lots of times my vocal cords have closed up and I can barely breathe. You may not have the same thing so worth getting it checked out but I have vocal cord dysfunction. There is a nerve under the vocal cords which can get irritated (which is controlled by the autonomic nervous system) and make the vocal cords spasm causing the choking/coughing/can't breathe thing. Mine is even worse because of having a dry mouth/throat from Sjogren's Syndrome. When it happens, naturally you panic but it's the worst thing you can do. If you can relax and try and relax your throat it helps a lot. The blood may have been a burst blood vessel from coughing so hard.
  10. My POTS specialist actually told me to take 500mg of caffeine a day (divided over the day). It works for me.
  11. I was getting this extremely severe constantly for months at my worst. I still get it quite often. I do notice though that if I eat lots of potassium containing foods, apricots, bananas etc it actually feels quite a bit better. You might want to get your levels checked and eat a banana everyday at the very least.
  12. I've had really bad flu this week and while I feel a bit better today the POTS seems to have gone crazy. Today my bp and pulse is fluctuating constantly, one min my pulse is as low as 37 and the next it's 88. With an average of 52 which it has been for the past 18mths. My bp has been going from 151/110 to 107/85. My bp monitor shows irregular heart beats as well and feeling my pulse I can feel it doing a beat or two, then skipping one or two then several fast beats then it repeats. I haven't felt too ill with this, no more dizzy or out of breath than normal. Do I need to worry or is it just the POTS going crazy because of the flu? Do I need to see a Dr urgently or can it wait til morning? (It's the evening here) or is this normal for POTs when sick with something nasty? It may well have been doing this the past few days but I don't know because I haven't monitored it as I've been too ill with the flu. I had an echo and a 24hr monitor 18mths ago which were both normal.
  13. I'm on the South coast of the UK and have had POTS pretty much my whole life but only suffered very badly with it for 5yrs and only diagnosed then too.
  14. Get yourself checked for Chostochondritis (sp?). Press on your sternum, does it hurt? It's mostly likely to be Chosotochondritis.
  15. Estrogen increases blood volume which helps with POTs hence the reason in feeling better. Birth control pills used to help me but this time they haven't so much and am experiencing worsening of POTS symptoms at the time of the month on the pill than off it. lasting a shorter time, 2-3 days instead of a week or more but more severe. I blame it on getting a bit older now lol
  16. Hi everyone, I managed to gain some improvement and have been steadly working on trying to increase what I can do. From going from a vegetable unable to do anything for myself and not be able to move from the bed, I am now able to move around the house, even clean up a bit, although I do still suffer with POTS in many ways. I do hope if the 'old ones' are still here that you have also gained some improvement. I do have a question though. In recent months I have noticed when standing for more than 10mins my legs start to feel numb, yet as if a vice is squeezing them and I need to move around or go and recline in a chair or bed then half an hour later I'm getting severe leg pains. I'm guessing this is blood pooling and bad circulation. I get a lot of leg pains, tightness in the muscles etc due to EDS and fybro and have done most of my life. I went back on birth control pills 6 weeks ago as my hormones are out of whack and giving me severe 3 weeks out of 4 PMS symptoms among other distressing symptoms. However, if blood pools in the legs due to POTs, surely it's not safe to be on the pill as blood pooling is what leads to a blood clot which the pill increases the risk of? I have been suffering more lately with leg pains so it's on my mind worrying about it all.
  17. I have been taking Florinef for over 4yrs. I haven't put on weight because of Florinef, although I lost a lot of weight because I needed to and not because of the Florinef :0) I too suffer badly with reactions to anything and everything, I have no reacted to florinef at all, it's worked wonders for me, no side effects. Everyone is different though, but maybe you can start off on a quarter of a tablet a day and build up over a few months to see how it affects you.
  18. Hi everyone, Not around so much as I've had some improvements and I'm continually working on my own rehabilition. By no means am I cured, but I have improved from being pretty much a vegetable. Just wanted to know if anyone has tried CoQ10 for their fatigue, did it work, how much did you take, how long before you noticed an effect, that kind of thing. I'm thinking of giving it a go. What concerns me though is articles I've read saying it can reduce high BP, mine's low-normal and so a little worried about that. I'm hoping it just reduces it if it's high and make no difference if it's normal! Also, that if you stop taking it, people with certain heart conditions can become a lot worse. I am unaware of having any heart problems apart from the usual tachy stuff that goes with POTS (though it's an awful lot less than it was) kind of worried if I were to stop taking it (haven't started it yet though) things will get worse. Has it helped with anyone's tachy due to the POTS? Thanks all and hope everyone is as well as possible.
  19. Thanks for all the suggestions, much appreciated,
  20. My testostrone levels have always been normal, slap bang in the middle of the reference ranges. They just said I was sensitive to it. I know my oestrogen is barely there and my progesterone is high when it should be low and vice versa. I epilate as it lasts longer (and I'm sensitive to hair removing creams) but it's such a pain having to get rid of so much (plus it hurts! lol) I feel like I could be the freak in a circus lol Thanks for the other suggestions. I do hope the florinef has nothing to do with it, have been on it since the end of 2005 and it's only recently the excess hair has got worse.
  21. Haven't been around much lately, have had quite an improvement in my POTS although I'm far from healthy or normal but I'm hoping I'll continue to improve. I do have a question though. I have polycystic ovaries and have always had excess hair as a result of this, however, over the last 6mths it's got worse and is appearing in places I'd rather it didn't. It's upset me and I feel like I'm turning into a man. I'm still on Florinef of 1 1/2 tablets a day and I'm wondering whether it's florinef doing it or my hormone problems (I barely make any oestrogen). I'm so scared of telling my Dr about the increased hair growth incase they take me off the Florinef. To me, florinef is what insulin is to diabetics, a lifesaver. I just can't go back to being worse again with the POTS. Has anyone else had excess hair as a result of Florinef and with the dose I'm on is it likely to be the florinef anyway? Plus, am I likely to be taken off it because of the hair growth?
  22. I had a positive home blood test for coeliac recently and a food intolerance test came back with gliadin (gluten), cows milk, rice and corn. I have so many symptoms of coeliac disease and numerous auto-immune diseases coming out, probably as a result of it. I react to gluten within an hour and a half and I feel dreadful for 2 weeks after. I don't eat a lot of gluten anyway when I did the test so I upped my intake a little and I couldn't do more than 3 days as I was so ill as a result. I recommended a book called Dangerous Grains and Celiac Disease, a hidden epidemic. They really opened my eyes!
  23. Could also be celiac disease. Definitely have some tests done.
  24. They never test me for anything. I had to beg for a thyroid test!
  25. Strange, I've had the same thing this past week! No idea why. Also my knees are hurting and I never get that. Very odd.
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