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About stephsurf

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  1. Good Morning, I was diagnosed back in 2014 with hyperPOTS. I was terrible for around two years and then slowly but surely went into some form of remission. Although my HR was still elevated in comparison to a normal healthy person it was nowhere near what it was when I was initially diagnosed. Like a few of you are saying on this thread the people in remission will be very unlikely to still be responding to these forums! That sure was the case for me. However a recent viral infection back in August has flared my POTS again. Not to the point of being as bad as it was but defini
  2. Please don't think that she is alone in her crazy heart rate aha! Definitely have a high resting pulse no matter what I'm doing even now I'm doing a lot better! You'll know when she's doing better when the urge to check your bp and heart rate stops! The slightest change in how I felt and id want to know and even that in itself can be exhausting! Wishing you all the best of luck to you and your daughter and hope you get some answers soon!
  3. My cardiologist never gave me any guidelines for heart rate either - even when there was times I was up to 120ish lying down I would just get told well that's POTS and as long as there isn't anything underlying that is sinister (which there wasn't) not to worry about it. I attempted the Levine protocol for a little and my maximal steady rate that was personally worked out for me because my heart rate was so high in general (even when lying down) was 170-175 which I was supposed to keep up for 25 minute blocks on the rowing machine on certain days throughout the schedule). Regardless there was
  4. It seems to be that some people do super well on beta blockers and they help a lot and to others they just make them feel even sicker or just generally not well on the other extreme - the latter was most definitely me. I'd probably tried a good three to four different beta blockers before I deemed them just not suitable for me, with others making me feel slightly better in terms of my pots symptoms but making me feel very strange in terms of other side effects. I personally found that although some of them really helped to lower my heart rate my body just didn't quite agree with this. A possib
  5. Nuun tablets have seriously changed my symptoms for the better. One tablet is enough for 500ml of water and has the exact electrolyte balance for it to effectively be absorbed by your body. They also have other good stuff added too such as vitamins and the potassium etc that has been mentioned here without the bad stuff such as sugar and colourants which make Gatorade a no no. They also come in a variety of flavours which is excellent considering I have completley given up fizzy drinks and the like - it allows me to have a choice of flavours again! They probably take a bit of getting used to b
  6. Glad I could at least possibly be of some help - let me know if you get any further with it or need to ask any other questions. I've got a lot of pharmacy knowledge I could help you with if you are looking at different alternatives and would be happy to look more up for it if needs be x
  7. Have you tried cyclizine? That's used a lot in the uk for migraine type motion sickness and sickness in general other than the ones that work directly on the stomach like Reglan. Cyclizine IV does tend to give some funny reactions on some People like me but taking it orally I didn't really have any issues apart from feeling a bit spacey but it cleared the nausea right up
  8. Have you tried cyclizine? That's used a lot in the uk for migraine type motion sickness and sickness in general other than the ones that work directly on the stomach like Reglan. Cyclizine IV does tend to give some funny reactions on some People like me but taking it orally I didn't really have any issues apart from feeling a bit spacey but it cleared the nausea right up
  9. diamondcut do you mind if I ask you if the vitamin B you take makes a big difference to your energy levels etc. I have started taking a B-complex - don't appear to have any anaemia but have not been formally assessed for just B12 or any other individual B vitamin. Just wondering as I took a full tablet today and seem to have some weird energy boost that I havent really experienced before haha!
  10. Hello, Just wondering if this is common occurrence with POTS - it is thought I have the hyperadrenergic type. It has become increasingly pronounced and does get worse when my symptoms flare and I am particularly fatigued but I have noticed that since I was diagnosed with POTS I have what I can only describe as a constant visual snow effect almost like the static effect you would get on a tv. It is most visible looking at a blank background but to be honest I see it all the time in my vision these days. I know visual disturbances are common in those with POTS but just wondering if anybody else
  11. Hello, I have recently started on a low dose of paroxetine (10mg) in an effort to regulate my autonomic nervous system. I had previously tried beta blockers but they made me feel sooo much more worse and I could only tolerate very low doses anyway. I initially had tried a low dose of setraline 25-50mg but this made me feel very unwell and wasn't doing anything for my anxiety either. Didn't have much hope for another SSRI but this paroxetine has definitely made me feel a lot calmer/less anxious and I have noticed subtle differences to my heart rate - especially on waking and at night time whe
  12. Gosh I can totally sympathise with this issue. After being told to start taking propranolol for the long-term, I took it for around 3 weeks before I realised my sleep was becoming very erratic. As soon as I realised I stopped it over a period of time but haven't managed to get any decent sleeping pattern back at all despite the numerous different drugs prescribed to help me sleep. In fact the low dose antidepressants for insomnia didn't work at all - infact trazadone gave me postural hypotension (we all know that is a no go for a potsie) and sleeping pills are really only effective for a coupl
  13. I am one of these few that has either normal blood pressure or higher blood pressure. Very often it is around 120/80 give or take. It's usually only airing on the low side in the morning before I have had something to drink and even then it doesn't really go below 90/60. However my heart rates go up regardless when standing and is at it's highest on a morning again... Around 120ish on. First standing and then 140+ whilst getting dressed etc. this generally then drops to a steadier 110-120 during the day but can rise further obviously with constant activity. I still get lightheaded/dizziness a
  14. Oh I forgot to add I suffer daily from varying headaches but eye strain/tension ones are primarily present no matter how much i try to get rid of them. Glasses or no glasses.
  15. Currently I am experiencing horrible dry eyes, uncomfortable eyes you name it! I can even hear my own eyes when I blink!! I have been using eye drops and doing eye baths almost everyday and the relief is only often for a half an hour or so. I find my eyes get much more easily strained looking at the tv or a tablet too which can get rather uncomfortableness. Recently I've also noticed a lot more of what I would call like a light mizzle/fuzzy appearance at everything I look at which is more noticeable in the day time or looking at a blank wall. I'm not sure whether this would be classed as blur
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