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Everything posted by Csmith3

  1. I wouldn't get your hopes up too much. I have had POTS and vasovagal syncope for 30 years. A few years ago, I found that I fainted much more easily and felt very tired. I gradually deteriorated over 18 months though it was only in the last 6 months that it was hard to continue with normal life. I got most of the symptoms in the first post. Then I had numbness in my feet and left arm (this is one of the last symptoms of B12 deficiency and means the levels have got unsustainably low). I had some blood tests to look for reasons for peripheral neuropathy. It turned out to be B12 deficiency.
  2. Thanks for your posts everyone. I will follow up the suggestions. I have been working on my core muscle strength for 18 months or so, often going to classes 2 or 3 times a week. I saw improvements in terms of my ability to carry out the exercises but my posture, aches and shallow breathing persisted, so 3 months ago, I thought it was time to try physio. I found a physio who I felt was most likely to have the skills, interest and perseverence to help me and she has been great. Many of the muscles around my ribs and shoulders have been released and its one of those things that you don't rea
  3. My guess is that they are related. I think there are several drugs which potentially help and it is a case of trial and error finding one that suits you. I couldn't tolerate BBs either. I take flecainide which has been a great long term solution with no side effects.
  4. I would be less confident on B12 if this has been a long term issue. That said, I can see why your doctor would err on the side of caution and start B12 injections just in case because there is no downside. When I ran my B12 levels very low, I did get some tingling and numbness but only at the very late stages of the deficiency which I think is the normal pattern of events. I generally felt very ill and had gradually deteriorated over about 18 months with ever worsening POTS symptoms. I don't know if that fits with your recent health issues. If it is B12, I reversed the deficiency in less
  5. Thank you. In a bizarre mix up I had at a spa stay, I ended up meeting a therapist who specialised in myofascial release and he thought it could be helpful for me. I live in a different area to the therapist so I didn't follow it up. I suppose I am one of those people that thinks something so gentle can't make much difference. I know really that this view is flawed! Thanks for the feedback - I might give that a go.
  6. Sif - you may be experiencing sinusitis in the sphenoid cavities. This usually results in pain at the back of the eyes and, if it is bad, pain at the crown of the head. When I get it, and it is worse when lying down so it is immediately obvious when I wake up, I think it feels like someone has hit me on the back of the head with a frying pan (not that I have experienced this). I find that any sinus pain leads to tension in my neck and into my shoulders. It is grim and I confess I reach for the 12 hour slow release sinus pills and if it results in tachycardia after a couple of days of takin
  7. I am posting to canvass opinion and experience on treating muscular pain which may arise from habits brought on by living with dysautonomia. The context is that I am currently seeing a physio and treatments which she would expect to have a sustained effect are wearing off very quickly. She thinks that many of the aches and pains are brought on by habits which would help symptoms such as hypotension and is wondering what level of improvement is reasonable to expect (i.e. what is a realistic goal?) I am a very shallow breather and tend to tense up all the muscles around by chest, ribs and shou
  8. Hi I too have TMJ issues. Not in the same league as yours, but still painful and relentless. I would second the advice about getting a mouthguard or appliance as dentists seem to call them here. You probably need a customised one for it to work properly. I went to a dentist trained in malocclusion who was able to fit the right appliance and make numerous adjustments as my jaw and bite changed over time. If you are aware that sometimes during the day you are applying to much pressure through your jaw, chances are that this is happening at night (clenching rather than grinding). The fact t
  9. Sue Your post made me smile. I have been seeing a physio recently and one of the first things she commented on was that I was a shallow breather. She encouraged me to try diaphragmatic breathing and tried to get the muscles around my rib cage to relax. They were extremely tight and it was tender when she pressed on them. I can change my breathing pattern if I am lying down. I can make an attempt at it if sitting, but to honest, even that is hard to sustain. I cannot change my breathing pattern when stood because I tense all the muscles around my chest. At first I thought it was just a
  10. Sorry, I fear I have unintentionally got your hopes up. It depends why you have POTS (e.g. if it is something treatable or transient) and many people don't have an answer to that. If, like me, you have EDS, chances are you in it for the long term, particularly if symptomatic for 3 years +. If it is sudden onset, for example in pregnancy, puberty or from severe illness, some people's only lasts, say 3 to 5 years. However, some end up being in it for the long haul. These are broad estimates which I have seen in journals and, I think, are based on the author's experiences in their clinic; no
  11. I think you are correct in that finding treatment to help the symptoms is key. It is never going to be easy to work and have POTS. Even small improvements in health through medication or lifestyle changes can make all the difference. I went for the sheer will strategy for about 8 years. I was then in such poor health that I looked to significantly downsize my job to regain some quality of life. I then went on a new medication which dramatically improved my situation and have been able to stay in my job and, touch wood, hope to continue in the future. If you have reason to believe you wil
  12. I avoid supermarkets and stick with small stores so there is less standing time required. And I shop when it is quiet to avoid queuing. The main places I shop in have seats which is helpful, or if I am queuing, I just sit on the floor if I am feeling faint. I am still on first name terms with the first aiders in those stores, though!
  13. It's interesting isn't it - how events can suddenly make us realise the extent of the illness/trigger factors in other family members. I am sorry it was connected with your MIL passing away. A rheumatologist once said to me that I showed signs of two connective tissue disorders. I didn't thing too much of it at the time, but now I can see that many of my father's side of the family side have EDS and my mum probably has mild-Marfans or something similar. As you say, it is the mix of genes which is unfortunate in the next generation. Maybe in years to come there will be genetic testing before
  14. I second that. I really appreciate this website and forum. It provides some much needed company when I feel alone with POTS and that people don't understand how I feel. The site is also a source of quality and relevant information on dysautonomia. Many thanks to all of you that give your time and energy to this site xx
  15. Thanks for your post. Interesting. I have tried several cardiac and anticonvulsant drugs and the best ones for me by a long shot have been sodium channel blockers. Whilst neither is prescribed for POTS, I am sure they are helping my POTS symptoms.
  16. I developed B12 deficiency. The injections are only needed if you cannot absorb B12 normally (which happens if you have an autoimmune reaction which destroys the cells which are required for B12 absorption). If you can absorb B12 but don't absorb enough (e.g. from general malabsorption, being coeliac, vegan diet etc) the oral supplements will still more than compensate and give the high readings of B12 which are also seen with injections. You can't overdose on B12 so it doesn't matter if the readings are 1000+. B12 deficiency happens over a long period of time because the body retains a 3 -
  17. Yes, I get that too with a stomach upset. If it happens at night, I just sleep on the bathroom floor to save myself getting out of bed and fainting! Do you ever get the reverse problem? Sometimes when I faint, a few minutes later I need to go to the bathroom, then that triggers a second faint. It doesn't happen every time I faint, but does say 50% of the time. Not sure why I get that effect sometimes but not others. In general, I don't have any gastric problems.
  18. Works really well for me. It has halved my resting heart rate with no side effects and I generally feel better and I am able to do more. The effect is dose dependent so it is possible to manage HR down to the desired level. There is a risk of managing it too low so that there isn't a sufficient HR range to cope with normal activities, but overall definitely worth trying if you have high HR and normal/ slightly low BP (it is not recommended if you have very low BP).
  19. It did nothing for me, good or bad. It is some time since I took it, but I don't remember getting any significant side effects. Good luck with it. We all respond differently to these cardiac drugs and it is just a case of trial and error until you find one that suits you.
  20. Hi I only had to do the test once as I fainted. I have fainted lots of times so I wasn't bothered. It was a bit of an odd feeling not being able to move my legs to encourage the circulation back up my legs, since this is second nature to me if I am stood. Otherwise, it wasn't very exciting I'm afraid! From starting to feel ill to passing out was less than one minute. I think that if nothing happens on the first TTT, they can give nitroglycerin. I didn't get this far so I don't know what it is like. Although it may not appear so from the pictures and descriptions, you do have control over
  21. I have had so many work ups for epilepsy; some positive, some negative. Then this year, I had a few of these "episodes" which I haven't had for years and it was obvious to me that it wasn't fainting or dysautonomia; it was definitely seizures. With the benefit of hindsight, I can now see there are some factors which can distinguish fainting/POTS symptoms from a seizure. There are plenty of these on medical sites on the internet which concentrate on clinical differences, but below I will describe two more practical things that I wish I had known about sooner. I should add that I mainly get p
  22. Alyssa You are not alone. I feel better if I am hungry. Shame I like food so much! Once I do eat, I can get on the rollercoaster of eating junk/caffeine for a short term energy boost, but like most "normal" people, it is only lack of willpower that makes me do this. I have had the reactive hypoglycaemia tests and the only thing that was notable was that my blood sugar level hardly moved.
  23. No, but I am with Chaos and Alicia in thinking that a nocturnal seizure is a possibility. I feel nauseous after a seizure and I think it is a common symptom. It sounds very unpleasant but I would probably wait and see if it happens again before I did anything about it. Sometimes these things are one offs. If not, it is worth going through all the testing.
  24. For what it's worth, I have B12 deficiency and my POTS symptoms were noticeably worse when my B12 levels were low. I had very little energy and was greying out a lot when sat down, let alone on standing. I tried changing the POTS and cardiac drugs to no avail. It was only when the neurological symptoms appeared (arm and feet went numb) that I was tested and the B12 problem became apparent. The body carries a 3 - 5 year spare supply of B12 and my symptoms gradually got worse for 18 months, presumably after a similar amount of time when I didn't notice anything. I had all the tests to fin
  25. Yes, my POTS symptoms suddenly appeared. Overnight, I went from normal 10 year old running around and playing to child who just wanted to lie on the sofa. I did have good and bad patches in the early years of POTS until it became permanent in my teens. Linking in with another post I have just replied to, I am sure that hormones, along with my genetic predisposition though EDS3, started off the POTS.
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