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Everything posted by stephsurf

  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 definitely incredibly symptomatic/bed ridden to some extent. Of course as soon as my symptoms came back I’ve been browsing these forums again. So when I saw this thread I wanted to at least reply and give some hope to those of you with hyperPOTS... in my case it won’t go completely but I was living my life and not giving a second glance to POTS in some good 3 or so years prior to this flare! I’m hoping the same happens again this time. Any questions please feel free to ask!
  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 times that I would hit 150 just standing from my bed and others where it would randomly run to 180ish out of the blue. However at these times when he did hit this and wouldn't go down id beg to be taken to the ER because it's a horrible horrible feeling and in that moment you really do think something terrible is going to happen. Regardless distinguishing those symptoms from anything serious that could be life-threatening always confused me because a lot of the symptoms would overlap, especially chest pain, shortness of breath etc. and generally just that feeling that I am sure your daughter is aware of that this can't possibly be normal. However every single time I would just be placed on an IV drip and it would come back down over time, and then I'd just get told the infamous 'well that's POTS that's supposed to happen' which still infuriate me to this day... Because if something non-POTS was happening to me that would require the ER to a normal person how would I beable to tell the difference .. Which lead me to feel quite the hypochondriac! But maybe that's because it's not got quite as much awareness in the UK?
  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 possible explanation for this and something I have posted on another thread was something I was told by my cardiologist at the time when I was really ill. Basically if you have the tachycardic symptoms of POTS this is because your body is trying to make up for your low or unstable blood pressure - natures way of trying to correct the problem I guess. Taking a beta blocker may make us feel less tachycardic but as a result this is preventing the same amount of blood reaching the brain and muscles which is the very purpose of the high heart rate causes by POTS for whatever reason this may be albeit sometimes this can feel unnecessarily high. As a result you are going to feel tired and short of breath and you might feel like you can't do as much activity before feeling short of breath. These are actually side effects of beta blockers themselves though and I'm sure you can see for this why you might be feeling the way you do, it definitely rang true for me. Likewise 90-95 doesn't seem too bad lying flat - for me that seems to be my normal unless I'm lying completely still and not doing anything but shutting my eyes. Although I am somewhat doing a lot better than I have been and able to live a relatively normal life now I do think part of the struggle is getting used to those symptoms in part and not having such a stress response when things do get a little worse which I can totally empathise is not an easy thing to do. Sorry for rambling I hope this helped you in some way!
  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 but since they have become my norm I don't crave for anything else. I probably use about 2-4 a day, 2 straight away in the morning to get my equilibrium back after a night without drinking and then spaced evenly throughout the day after that depending on if I have any flares etc.
  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 gets this? It's still there even if my pulse is normal/laying down. Would love to hear from others!
  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 when my heart rate is the lowest. I have been taking it for just over 2 weeks now - I know this isn't a very long time but I am still suffering rather badly from the lightheaded/dizzy feeling and a feeling of my muscles/body being quite weak. Has anybody else experienced this from this drug or similar drugs and has this eventually gone away? Also I seem to be sensitive to developing visual changes with these drugs. My eyes are a lot more dilated on the paroxetine and my vision just seems off and kind of blurry which is making my eyes feel very strained and tired. The dr's don't seem too worried but its annoying more than anything else. As I know I am suffering from rather chronic fatigue at the moment due to trouble sleeping I sometimes don't know whether I am actually tired or its just my eyes! The vision blurriness is also rather off-putting because it just feels like something is different which is uncomfortable and doesn't make my head feel that great haha! Basically just a post to see if anybody else has had any similar experiences or any experiences whatsoever on this drug or similar and whether it has had a good effect on them. I have looked back at a few old posts but just wanted to post my own to see if anybody has more recently had any experiences. Thank you!
  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 couple of days and then i'm only getting a couple of hours sleep before I'm back awake again. Even though I always had issues sleeping, in other words it would take me a long time to drift off but once I did I was good for a while and if I did wake up and was still exhausted I'd relatively easily fall back to sleep again. However now it just seems like sleep is completely illusive - even if I am exhausted to the point of feeling like I am going to collapse. Not really sure what went wrong to be honest. I've literally tried every non-pharmacological measure as well and have attempted sleep hygiene but this was very difficult to do due to sheer exhaustion making me feel so much worse. I do realise that my exercise has dwindled rather a lot during this period for obvious reasons, but I'm thinking if I start that up again at a slow pace, maybe if I am able to physical exhaust myself on a consistent basis (which may be very difficult at first), this will get me back into the swing of things again - I hope so anyway. Has anybody else had any issues to this extent with their sleep? I find that I can't even take a nap during the day now even if I want to! I know I have anxiety issues (who wouldn't with this condition) and its thought I have the hyperadrenergic type as I rarely have low blood pressure so I know to a certain extent this is negatively impacting me but just can't believe how bad it has actually gotten recently.
  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 at the moment specifically as I've bad a significant period of down time but my blood pressure doesn't really reflect this which is confusing as sometimes I'll feel quite faint but my blood pressure isn't going to let me.
  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 blurry vision or not but I wonder whether the eye dryness has a lot to do with it!
  16. The first day pots came to head to me and I ended up in the ER I was climbing the stairs and I got really horrible pulsing in my right ear too. An experience I don't ever want to have again! It hasn't happened since but since I was diagnosed shortly after this episode with pots I assume it's related.
  17. I did actually purchase Himalayan pink salt but only ever used it occasionally in my water as I don't really like the taste! Having said that reading the idea of having a salt bath with it sounds like it might be worth a try - I also think I may start subbing it for the salt I use on my food as I currently use sea salt. Hadn't really read up much on it in the past just I heard it was better than normal salt. Rather intrigued now I have read those links though saying it contains so many minerals. Thanks for the links!
  18. Literally sounds as if I'm talking hah! I relate to everything you've said. I think feeling bad makes me anxious and angry at the state I'm in and my anxiousness makes me have trouble concentrating or wanting to focus on things/ talking to people so I just tend to get annoyed and like you said Italy it out in other people. Then I get annoyed at myself for feeling that way so I get angry at myself and then have a good old cry! Don't think your alone infact reading your post actually has given me a little hope that I'm not the only one and you shouldn't feel that way too
  19. Totally agree. I actually find that watching the TV I am more aware of my symptoms that if I were to be practically doing something. I've found that in some cases recently if I'm feeling bad laying down or moping about I actually feel better once I've started to do something even though I feel like I don't want to do anything! If that makes any sense? My neurologist also mentioned it seemed like I'd become rather hyper vigilant. But I think once in that state it's difficult to get out of!
  20. Hello, I think this is such a fantastic post for where I am right now. I got into quite a big downward spiral from just constantly worrying about every little thing that was happening in my body I think I've become hypersensitive like in the post above mentioned. I can totally relate to your experience of going out the house. Exactly same thing happened to me and I just need to stop thinking so much and think what's the worse that could possibly happen but obviously that's very difficult. I also think sometimes I think feeling mentally normal as in not having a little bit of anxiety all the time Is a strange feeling as I'm not used to it so sometimes as silly as that sounds so sometimes I'm like "what's this? Is this how calm is supposed to feel or is this not normal?" I guess because it's been so long I've mind if forgotten what normal feels like. I also agree Galatea! Getting up at 9am for a dr's appointment even though my sleeping schedule was all back of front (since I'd usually feel better at night so go to bed later, hence get up later) if actually feel for a few hours more mentally alert and with it. As a result I'm trying to reset my body clock. Has anybody had to do a similar thing/tried out melatonin? Would be interesting to hear some similar stories.
  21. Wish sleeping wasn't an issue! Propranolol gave me all the feelings of tiredness yet the complete inability not to sleep! Very frustrating. I've just got nebivolol 2.5mg OD off my dr yesterday, so as I was already trying to get myself off propranolol I have started that today - took a little longer to kick in than propranolol does, but its also once daily dosing which I think is a good thing, especially if it does end up working. Apparently it works a little differently from the other beta blockers - less likely to cause fatigue etc. so I thought it was worth giving a go. Dr did mention bisoprolol if that didn't work too. Feel like i've got a few withdrawal effects from the propranolol but hopefully they disappear in a couple of days. Crossing my fingers that this one is a good one! Thanks for your reply. I have viewed other posts regarding your issues with mast cells etc. so I take it this is the reason you are unable to tolerate beta blockers? I think I'll give a few others a shot, but if I still have the same issues I did with propranolol I'll look into other options. I've never had low blood pressure really, only normal or above normal so low blood pressure for me isn't really a problem as far as the dosing - which would maybe suggest I have a more hyperadrenergic type although its never really been looked into any further, and dr's don't seem too concerned.
  22. Yeh I think I know the zombie feeling your on about all too well. Its like I knew what I was doing, I knew what was going on around me, but I just felt really disconnected from it all - very strange, I didn't like it at all and it was making me more anxious than before although it just wouldn't allow me to full on panic because it kept my hr/bp down. But you saying that it made you feel surreal definitely sums it up well in a nut shell! I am actually reassured you have said a similar thing as I was starting to feel like I was actually going crazy haha. I have issues at the moment sleeping anyway, but it got to the point where when I initally tried it I would get the horrible dreams etc. but then I was having a lot more difficulty actually getting to sleep, and then waking a lot more frequently. After taking it for much longer this time I was actually waking after way more hours of fitful sleep to the feeling that I hadn't slept at all - and I think I really hadn't because my energy levels were utterly appalling!
  23. Hello, I just wanted to get some feedback regarding peoples experiences with beta blockers. Ever since a few weeks back I have started taking propranolol continuously after a severe pots/panic attack like episode and a visit to the ER. I have occasionally taken it prior to this off and on when I felt I needed it but often ended up stopping it because I didn't quite like how it made me feel - however on these occasions I only took it for a max of 3-4 days. For some reason a small amount does a lot to me as well so I ended up only taking 2.5-5mg 2-4 times a day. After stopping it the time prior I noticed I had about 2 weeks of what felt like constant panic attack like episodes and since starting back on it again those are the only things that have stopped. I actually feel more anxious on them I'd say but It stops the physical effects so I don't have a full blown panic. Anyway I've now been taking it for about 3 weeks at 5mg about twice to three times a day. I thought nothing of it at first because I'd had a migraine around the time I started taking it which made me feel rather horrible as they do and that lasted a few days. My migraine has since left but I still feel very strange. The only thing I'm taking is propranolol. I am experiencing what I would call a strange brain fog where the best way I can describe it is as being dissociated from my surroundings which makes me feel so anxious. I also have been having weird visual disturbance which I at first put down to the migraine but that doesn't seem to be the case anymore and it's a fine mizzle like blurriness that I see in front of me. For a number of days now I've actually felt rather depressed, withdrawn and really slow which is not like me at all and I don't really like the feeling either. I also previously had trouble sleeping as I think any potsie person does but this is a completey different feeling waking as if I have had no sleep and regularly waking up/lots of dreams. Trying to do things the next day with an even more sleep deprived foggy incoherent brain is really impacting my ability to function/exercise and get my pots back in order. I also have the cold extremities, occasionally get jaw pain, weird numbness feelings, tight neck but I know these can be quite common. I could deal with these without the mental issues. So I guess my question is has anybody else found similar symptoms? I think I really need to taper off this one and try another to ease my mind that it's not me going crazy and it's the medicine making me feel loopy. I know propranolol readily enters the brain unlike some of the newer cardio selective types so can anyone shed some light on what has worked for them? Would be so reassuring to hear similar stories! Thanks in advance
  24. Yes I know the feeling of feeling like your drowning from water consumption too! I think I've probably done it within 2 minutes before unknowingly just because I have felt so thirsty. I've decided to be really careful about drinking water today with my electrolyte tablets and see if does Infact make a difference to my general feeling! Fingers crossed!!
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