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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. It takes a few months to reverse the deficiency so for people trying supplementation, be patient. But to be honest, it is difficult not to intake enough B12 so the issue would normally be absorption. In people under 70 (in older people, the stomach lining thins and absorption reduces so B12 deficiency is relatively common), this is most likely due to lack of the protein in the stomach wall which is specific in allowing absorption of B12. No amount of oral supplementation will help if this is the problem. If general poor absorption is the problem, this is likely to be chronic so over time, the B12 levels keep decreasing. B12 is vital for life so it is not something you can live with long term and just put up with the symptoms. I felt much better once the deficiency had reversed, but it did not make any difference to my POTS, though it did reduce the syncope back to normal frequency. I realise the symptoms sound very similar to POTS but to me, it felt quite different. It felt more like I was coming down with influenza, it was unrelenting and not helped by rest. Once the numbness and tingling set in, it was there all the time and it spread quickly. I had problems with fainting because I was anaemic (B12 is needed to make red blood cells). To me, POTS is what it says on the tin; worse when standing or sitting and the severity of the symptoms varies over a short period of time.
  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 realise the tension is there all the time until it has gone. It is no longer difficult or painful to breathe more deeply. There are still areas that are proving hard to fix (e.g. stiffness in thoracic spine which to an extent are still limiting how deeply I breathe) and I am keen to see if I can make any further improvements. What is interesting is that since this recent success, my resting heart rate has dropped 30 to 40 points. Upon standing, my heart rate is still increasing but is attempting a recovery before rising again. Things aren't perfect, but these are very significant improvements for me and have lasted for a month. Obviously I am wondering if this is going to continue. Fingers crossed. What I always find difficult to assess is which came first; POTS or muscle tension/insert any other medical symptom. I have had POTS for too long to know the answer to that question but I suppose my assumption was that POTS came first and contributed to the development of other problems. It is interesting that some members of the forum, such as Ramakentesh and Sue, who have developed POTS during adulthood can make the connection between illlnesses starting at the same time as POTS rather than one being a result of the other. For people like me who had gradual onset POTS, I just wonder if the other fixable medical issues could be addressed early on so that teh unfixable stuff like POTS doesn't become so debilitating.
  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 than a month but the neurological symptoms arising from nerve damage took about 3 months to resolve. Again, I think that is a pretty normal version of events.
  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 taking it, so be it because it drives me mad and nothing else touches it.
  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 shoulders to the point where it is painful to breathe more deeply. Even with awareness that I do this and trying to undo the habit I struggle to resist this tension, particularly when standing, because I am convinced it improves my standing tolerance. This has led to me getting pain around the thoracic spine and shoulders. Apparently many of the autonomic nervous system nerves/ganglia are in the thoracic spine (apologies if I haven't used the correct anatomical terms here). As if to counter this, my knees are permanently bent and groin area is very tight. So I have developed an odd seesaw posture whereby if I am lying down I can either keep my ribcage on the floor or my thighs/knees but not both. Is anyone else a very shallow breather with similar aches and pains? Have you had any physio treatment? If so, did you see any medium or long term improvement? Many thanks in advance.
  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 that you find your jaw can be stiff and doesn't want to open far is also a sign that you may be clenching it. You might find that you need an appliance that fits on your top teeth rather than the more common ones for tooth grinding that protect the lower teeth. For me, when the appliance is working, I get 80 - 100% pain relief. I am now several years down the line and the appliance (number 4) is only providing a partial solution and something more drastic is required because i am told that building up the appliance further could aggravate other problems. Surgery is an option but the results are variable so I am leaving this as a last resort. I have a chiropractor who puts the jaw back into place which is a bit brutal but is helpful. The chiropractor has advised me to see one of the three most experienced dentists who also deal with surgery/TMJ/craniofacial pain etc. I am told it may be possible to bring my lower jaw forward and make the joint/mandibles more stable and give me a better bite; all without surgery. I dread to think how this is achievable and was told that it will change my facial appearance (I wasn't sure if the chiropractor was suggesting this was a good thing or not!) This specialist is miles away from me but I will see him over the next few months and I understand that after about 3 hours inspection and scanning he will give an opinion on whether he can help and if so, what it would involve. It seems that as with all things related to dystautonomia/connective tissue problems, it is a case of finding the right person to fix things and then either having a lot of money or good insurance to pay for it. Best wishes. I really feel for you being in so much pain.
  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 matter of breaking a habit. But, as you say, seconds after consciously deciding to relax the muscles I go back to tensing them when stood up. In time, I realised that it is instinctive, and not just a bad habit, and that it makes me feel a bit better. You say you are not tensing other muscles. Since being made aware of the muscle tensing over the last few months, I have realised quite how many muscles I am tensing without realising. I know I flex my calf muscles a lot and will clench my fists. Now, I realise I could add almost anything to the list! I am partly blaming mine on EDS because it can help with positional sense though I realise it is mostly to counteract blood pooling and hypotension. It is interesting that you have only done this since having POTS. I have had POTS so long that I can't remember anything else. I feel more justified in saying to my physio that shallow breathing is helpful and it is not that I am lazy or unwilling to break the habit. Thanks for your post.
  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; not hard and fast rules or something derived from research. My comment was intended to be in the context of careers. There are people on the forum with sudden onset POTS and were in a career which is not compatible with POTS (e.g. someone who was a kindergarten teacher springs to mind and my heart went out to her because I recall she loved her job). In their shoes, I would be tempted to not work in the short term or make do with another type of job with a view to going back to their original career once they are better. If POTS did not in fact go away after 5 years, I would cut my losses and retrain in another career. However, if the individual is likely to have symptomatic POTS for many years then I think it is important to choose a suitable career which can accomodate POTS. I don't know what your career is now; I assume you have already given some thought to alternatives in your field which might be a bit easier to manage with your current health situation. It sounds like you are in the early days of testing and I think that in your position, I wouldn't be too hasty yet and would try to wait a while and see how things develop. Your health issues may turn out to be something else or there may be scope to improve your symptoms to ease your work situation. In summary, it is not possible to have a crystal ball so you have to make a decision based on the best information you have. My doctor told me that I would be symptomatic for the long term (given I had already been ill for 15 years I had worked that out anyway!) and, at the appropriate time, told me that there was no further scope to improve my symptoms in the forseeable future. I had been thinking of a career change and that helped make my decision. I suppose my point is that if you are in a bad patch with prospect for improvement, it is worth trying to stay in your chosen career. If not, and there are no alternatives in your field, I think it is worth researching other careers even if you don't act on them in the short term.
  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 will have POTS for 5+ years, as has already been said, career choice is important. The two most important factors for me have been flexibility and a sympathetic employer. This is in terms of hours worked, meeting deadlines, ability to lie down and eat when necessary and to have a job where colleagues can cover for you and would be willing to do so on the occasions when you just can't do it alone. It is not all give; I help out others and I am a hard working and loyal employee. The careers that come to my mind are the old professions such as law and accountancy, IT and similar consultancy work, statistics/information management and also academia. I am sure there are others. I'm not sure what you specifically have in mind when you use the word "successful". I am grateful for being able to stay in employment. However, I don't think I have been as successful as I might have been due to physical restrictions from POTS but also mentally, tending to avoid putting myself forward for roles where there is more individual responsibility and I am worried that I would be unable to perform to the required level. I can put some of this down to POTS and I am sure some is down to my personality. I suppose it is just another area of my life where I feel reasonably content but still have that feeling of POTS holding me back from achieving my potential.
  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 marriage!
  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 -5 year back up supply. I found I gradually felt worse and did put some it down to POTS getting worse, but in the end, the neurological symptoms made it clear that something else was going on. The B12 shots or pills will only give you energy if you have anaemia, and the resulting tachycardia, caused by B12 deficiency. If you think it is worth pursuing this, as Katy says, just get the supplements from the pharmacy and see if you feel any better. Here, the B12 supplements are behind the pharmancy counter but available without prescription. They aren't the normal vitamin piils you see on the shelves in the store. It took 4 weeks of oral supplementation for my B12 level to reverse from very low to twice the normal level. It probably took another 4 - 6 weeks to reverse most of the B12 deficiency symptoms and therefore feel the benefit. It took another 6 weeks to reverse the nerve damage which had given me numbness - this is only a feature of very low B12 levels so hopefully you wouldn't need to wait this long.
  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 the situation. They can move the table back down to horizontal in a second if you have had enough. Try not to worry - the intention is to replicate symptoms you normally have, just with the bonus of being able to monitor HR, BP in a controlled environment. Best wishes
  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 partial seizures and a few absences. These differences only relate to my experiences with complex partial seizures and absences (where in both cases there is some loss of awareness rather than just strange sensations I get in a simple partial seizure whilst being totally alert). If I have a seizure, it is like someone has pressed a pause button and when I come out of it, I am in the same place but everything else has mysteriously moved on. If I am stood, I will stay rooted to the same spot and remember spacially where things were before the seizure started. When I come out of the seizure I notice that other people have mysteriously moved without me seeing them walk and other people have appeared from nowhere. If I am sat alone, so there is no visual clue that I have lost some time, I wouldn't even know the seizure had happened if it weren't for the post-seizure hangover effects (I feel sick, mix up words etc). It is not that things feel hazy; that time never existed for me and there is no memory what happened during the event. The other thing that distinguishes a seizure for me is what happens when I come round. If it was a faint or what I would consider zoning out from POTs-like symptoms, onlookers are calm, smiling and happy to help. They will tell me I have fainted, look pale, seemed distant etc. When I come out of a seizure, people look scared, they are agitated and not sure what to do. They can see the difference. However, they never said to me that I had had a seizure or that it looked different to my usual symptoms. I know that some seizures can be caused by lack of oxygen to the brain and Potsgirl, yours sound like classic examples. I have been told that some of my seizures could be cardiac related. I don't buy it. Epilepsy is quite common whereas hypoxic seizures aren't. Also, on the rare occasions when I have fallen, I can get up two minutes later and I feel absolutely fine. Presumably, you feel less than fine. It is unsettling getting seizures out of the blue and suddenly everyday tasks can seem like a hazard. Best wishes to all.
  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 find out why I was B12 deficient but nothing showed up which was considered very unusual. The antibody test was fine (I suspect the downhill progression if this is positive would be faster), I wasn't anaemic, coeliac/gluten tests were all OK, didn't have any other deficiencies, I am not vegan etc. My B12 level dropped to 160. Within about a month of taking B12 (50 micrograms once a day; the same dose as you can buy from the pharmacy without a prescription) reversed the B12 deficiency. It took another 2 -3 months to feel "normal" and for my heart rate to settle down again. My view with these things is that at some point, something else will go wrong which will explain why I got the B12 deficiency!
  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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