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Csmith3

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  1. I've been on and off midodrine for 2 years. For a few weeks it makes a real difference; I feel better, my BP is at a normal level and I can stand for longer. I just can't seem to maintain this positive effect so after, say, 3 weeks I feel a bit worse than usual and my standing time is reduced. If I carry on taking the midodrine or increase the dose, I just get worse. I thought I would reach out to you to see if you have either had the same issues or have any ideas to solve the puzzle. Here are your clues.

    5mg seems to be the right dose for me. Any less and nothing happens; any more and I am too jittery. Ideally I take 3 times during the day.

    At first it takes about an hour for the midodrine to work. After a couple of weeks it takes many hours to start working (today it took 5 hours) though it is still effective. Does anyone else get this delay? [At this rate I'll be taking it last thing at night ready for it to start working when I wake up the next morning!]

    I have tried stopping the third dose of the day in case the problem was desensitization of the receptors or just that too much midodrine (or the by-products, which my doctors have suggested could be the problem) in my system was the issue. It doesn't help.

    I have tried stopping midodrine altogether for a while for the same reasons. For a couple of weeks I feel much worse, then gradually get back to normal (pre-midodrine normal). I seem to need to stop the drug altogether for at least a month to reset my system and get the benefit of the midodrine again. Otherwise the same problems start immediately as if I had never had a break.

    I know that in theory you can use midodrine on an irregular basis. I also note that in a previous discussion, someone mentioned they had been advised against this because your body would find it even harder to adjust to BP if this was being boosted by midodrine on an ad hoc basis. Perhaps this is part of my problem.

    Thanks for reading. I would appreciate any thoughts you have.

  2. I did look into this. I think you have to take it daily for at least 3 months before there would be any improvement - it's not something where you can expect immediate changes.

    I could see the logic that it might help, but I don't think you can tell in advance if it is something that would help you as an individual (it's not for general application; most people wouldn't need additional Coq-10). Some people recommend supplementing other mitochondrial enzymes and I must admit that at this point I started to doubt whether this strategy was a good idea. Where do you stop? And for those of us with POTS/EDS, this seems unlikely to be a critical factor.

    In practice I bought the Coq10, didn't take it very often (I'm not very good at compliance with supplements, particularly when there are no quick results) and not surprisingly given my lack of compliance, it didn't do anything. That said, if I find that lots of people here report an improvement, I would be happy to give it a proper chance as it seems harmless enough.

  3. In my last post I gave you the highlights of what happened with my abnormal EEG. I'm not sure I've given you or others a fair picture of what happened and I think I need to say a little more because the whole process was actually very negative to my health, long drawn out and not one I would wish anyone to repeat. Looking back again at your posts, I wonder if you have already been here so I may be preaching to the converted.

    If you and your doctor are pretty confident you don't have seizures, I would not get any further EEG testing. I know this sounds very negative and the only thing I have to back this up is a series of negative personal experiences, but I think there are some points worth making.

    I have seen neurologists at the top of the profession specializing in epilepsy and diagnosing epilepsy versus fainting. I don't think there is an answer to many abnormal EEGs in current medical knowledge. There might be educated guesses, but little more. Even in this short topic, though many are reporting abnormal EEGs, they seem to be abnormal in very different ways so I don't think there is going to be an easy answer.

    Whatever the cause, the outcome is too much electrical activity. To dampen down the electrical activity will require anti-epileptic drugs. I have taken several of these. None helped. They all have short term side effects which range from unpleasant to intolerable. The long term effects on brain function can be permanent. It may be worth putting up with this if I had frequent epileptic seizures. But if the problem is POTS/NCS and the only potential benefit is a slight improvement in brain fog/confusion when these episodes happen (not a general improvement in brain fog I hasten to add), there is no way I would take them again for such a small potential difference in symptoms.

    If someone puts in your records that you may have epilepsy, that is a label which is very difficult to get rid of. Like it or not, society treats all epileptics the same and caters at the level of those who are most affected. This means all sorts of restrictions start appearing which can affect work, insurance, leisure activities even if they are entirely inappropriate in your circumstances. It can also distract the doctors from looking for whatever is causing most of your symptoms.

    In summary, all I can see in pursuing an abnormal EEG which isn't epilepsy is a small potential upside in understanding with the potential for a lot of downsides. Proceed with caution!

  4. Yes, I've had this on and off for as long as I can remember, though I suspect mine isn't nearly as bad as yours from the description. I have never got it investigated as it is transient and it's not that cold here most of the time.

    When I went to see an allergist, he said I didn't have allergies, but I had vasomotor rhinitis because my body didn't like cold air (and other things, but mainly the cold) and overreacted to it. I know what you mean about it being worse when you go back inside and I thought it was change in temperature that was the problem, but it was suggested to me that it just seems like this because I'm not usually outside for very long.

    A couple of doctors have said I should cover my face with a scarf when the air is cold to warm the air I breathe in. It never occurred to me to mention the breathing issue to them, but I wonder if it's part of the autonomic don't like cold air problem. I have nothing to substantiate this, it was just a thought!

  5. When my POTS/NCS was at its worst (and I didn't have any diagnosis), I had my first EEG. I started feeling ill during the test and it coincided with an abnormal reading. It's a long time ago now, but I think I felt very faint and it was one of those horrible times when you want to lie down but I had to sit in a chair during the test. Had they not seen me there and found I was able to communicate as usual, they said they would have thought it was a grand mal seizure from the EEG. I have never got the to bottom of why this happens but I do think there is something strange going on which isn't epilepsy.

    I should say that my situation is different to yours since my EEG when I'm well is normal. And if I feel a bit ill, that doesn't seem to be enough to cause the abnormal EEG. Its only when I feel really bad.

    Maybe if the brain is receiving less oxygen than usual, but not enough to cause a faint, it sets off these electrical abnormalities in people that are susceptible. Thinking about it now, it might be interesting to have an EEG on a tilt table test where they prolong the pre-syncopal state. But not interesting enough for me to volunteer for it!

    My abnormal EEG has been extensively investigated since it took years to find out that dysautonomia was the problem. All the senior neurologists say it isn't epilepsy but have no suggestions of alternatives. My MRIs and psychological and skills tests are all fine so it appears to be something transient rather than any permanent structural problem.

    I haven't knowingly had the blood test you refer to so can't comment on any possible connection.

  6. I have never had swelling or dizziniess due to flecainide, though I see they are amongst the range of possible side effects in the patient leaflet. When I increase the dose or I am at the limit of what I can tolerate, I get visual disturbances which I think are a common side effect. This is most noticeable when I turn my head and it takes a while for my vision to catch up. And I have to be very careful not to get run over when crossing the road!

    I have come off flecainide several times and though I feel worse, nothing very exciting happens. However, the arrhythmia I take it for is not life threatening so it doesn't matter if I have a few bad days. If you have serious arrhythmias, make sure you have someone around if you are going to suddenly stop the medication.

    I understand that flecainide has a very narrow therapeutic range and maybe the dose you are taking isn't suitable anymore. I have taken flecainide long term and had to change the dose a couple of times for this reason. Have you considered skipping a dose? If I accidentally miss a dose, about 6-8 hours after the missed dose the level of flecainide is too low and I start feeling ill. This might give you a preview of what will happen.

    I usually come off flecainide when I'm in a bad patch in the hope that coming off the flecainide is going to solve it. It never does, but I never learn! If stopping flecainide doesn't help and you decide to take it again, bear in mind that it takes a week or so for your body to readjust.

  7. I've wondered the same thing. I sometimes feel faint when lying down in bed and the only way I can get to sleep is by raising my legs/feet, either by raising the foot of the bed or I have a foam ramp (not so good for my back but easier to put in place if I happen to need it one night). It never seemed to cause any long term effects.

    I had heard of raising the head of the bed and always thought this would make me worse. I have tried but just can't sleep in that position, so came to the conclusion it wasn't for me.

    I used to sleep on my stomach all the time. Not because it is especially comfortable, rather it was like my body wouldn't sleep in any other position. Now I have my POTS and other health problems under better control I hardly ever sleep on my stomach. I always thought I slept on my stomach when my heart was racing, but then I discovered that in fact lying on my stomach raises my HR 10 or 15 points and I tend to sleep like that when my heart rate is low. If I've overdone the midodrine, this problem comes back.

    Definitely wouldn't try raising both ends of the bed - I think that is asking for joint problems and I can't imagine it would make POTS any better.

  8. Actually, now I have my dysautonomia symptoms under better control I do sweat less than I did, but still more than the average person.

    This may just be me, but I have restarted yoga and one of the benefits for me is that it really improves my temperature regulation and I actually feel warm a lot of the time and don't need to wear so many clothes.

    Otherwise, you'll have to hope it swings to the other extreme and you stop sweating. Has happened to some of my relatives.

  9. I can relate to most of the responses. If I'm in a bad patch, my complaint would be feeling instantly tired on exercising - feeling absolutely exhausted like I had been exercising for ages when I had only done 20 seconds; immediate tachycardia. I now know not to bother if I'm like this, it just makes matters worse.

    Then there is the "I've overdone it" feeling that sometimes happens a bit after the exercise, or even the next day, when I struggle to stand up and get very tachy. There is a learning curve with this and I have minimised this reaction as far as possible.

    And finally the greying out/loss of vision during exercise when it's all just too much. Thankfully this doesn't happen to me too often, but is a reason why I prefer exercising somewhere safe indoors.

  10. Yep, but unlike EM's daughter, I still feel the cold! No doubt you have tried the special antiperspirants in the pharmacy (with an aluminium compound, I think?) which can help, particularly if you are at the point where you are self conscious from the marks on clothes. For me, they just shift the problem elsewhere so I don't use them all that often, but can be useful in summer. If hyperhidrosis is a big problem, you could consider botox injections.

  11. I have a BMI of 19, but a body fat percentage of 32%. Sadly, I believe these numbers are true and that I can't blame POTS directly. The numbers have been more or less static for years and hardly vary according to when during the day they are measured or my general state of health.

    Here are my thoughts. I naturally have a very light body frame and very poor muscle tone (I have EDS III). Anything else is fat.

    For years I was very underweight, but the last 5 years or so my weight has crept up to the low end of normal for my height. Overall, I have had a 40% increase in weight in that time. I now have quite a curvy figure for my weight. It's mostly from fat.

    I think the answer is that ideally I would trade some fat for muscle, but this is very difficult for anyone, let alone with EDSIII and POTS exercise intolerance. To the extent I have tried this by doing some resistance work in the gym, I have got the body fat percentage down a few points without decreasing my weight. And then I stop and the body fat percentage reverts to 32%.

    Mmm. Maybe I shouldn't have eaten three cakes already today!

  12. Yes, this is my experience too. When my POTS is bad, I am constantly hungry and eating enough for 2 people but still lose a lot of weight. I can't really claim to have such a good diet; I eat the healthy stuff but also lots of fat and sugar. Having been undiagnosed for so long, I spent many years being very thin and overeating and now struggle to find the willpower to cut back to a normal amount of food.

    When the POTS symptoms improve, the weight gradually creeps back. It never used to make any sense to me, but I now realise my weight depends on how well I can control the tachycardia (and to a lesser extent the resulting GI symptoms). I suppose this is why exercise, when I can manage it, has such a dramatic effect on my weight because it's so hard to exercise without setting off the tachycardia.

  13. Yes they do, and I also went for the stopping my periods solution.

    My preferred solution was also depo provera, but after 5 years my prescription was withdrawn due to concerns about osteoporosis (I think this is technically rubbish, but I wimped out from fighting that one!) Anyway, I went for an implant in my arm instead (Implanon) which lasts 3 years. For me, not as good, but much better than doing nothing. Plus points compared with depo provera are no weight gain and no problems with feeling a bit "flat". Bad point is irregular bleeding (don't underestimate this if it is something that would concern you - I understand it is the top reason for getting implants removed).

  14. I haven't. Given his rather prominent web-site on fainting, I have always been surprised that his name doesn't seem to come up here or anywhere else. I guess your options are a bit limited since some of the POTS specialists don't see children (assuming your son is not an adult). I also note Dr Deering's syncope clinic is part of the general and old age medicine department.

    I would call the STARS office and see if they have any recommendations.

  15. Alas, yes. Feel much worse, nausea and have even fainted. Classic scenario for me is eating breakfast or a meal with too much starch, trigger POTS, upsets stomach, go to bathroom, faint seconds later. This happens within, say, 15 minutes of eating. However, it also happens at other times when I haven't just eaten, in which case I feel bad/sick for 15 - 30 minutes, but don't faint.

    The only thing that has helped me (other than general improvement in symptoms from medication and limiting food intake) was sugar rich mints - I know, hard with the nausea but is worth it to settle cramp/nausea. Too bashful to supply more details here, but can PM me if you wish!

  16. One tip I read that struck a chord with me was this. It's designed for short term stresses rather than life changing events. The sort of thing that seems like a big deal at the time, but a year later you wouldn't even recall.

    If something is on your mind, allocate yourself 10 minutes to think about it and what the possible courses of action are. Write down each option on a piece of paper. Often there are only 2 or 3 options (including doing nothing) and they are immediately identifiable. Decide which you will follow. Then throw the pieces of paper away, carry out the action (if any) and stop thinking about the other options. That's it. Try to be aware of slipping back into the same train of thought and if you do start mulling over the options again, think about something else.

    I liked this idea because I realised I was using up so much energy on going over and over things that were actually quite small problems when they were condensed down to the facts.

    Good luck with finding a helpful strategy.

  17. I'm sorry to hear you are having a bad time. Yes, the things you describe are familiar to me.

    I'm not aware of any great solutions to the stress/adrenaline rushes and use the usual POTS coping strategies. I just let the feeling happen when I'm stressed. Having a lie down and being in a cool room can help. Eat little and often to minimse the gastro symptoms. The problem only goes away when the stress reduces, but once this happens I quickly get back to normal.

    The severity of my response to stress basically mirrors my general state of POTS health, so a general improvement in my symptoms reduces the impact of stress.

    There are times when the stress response is appropriate and helpful. But if you are describing a situation where the stress response is unhelpful, can you do something about it? There is lots of (non-POTS) advice around about managing stress and trying to limit the time you spend worrying about situations which are outside of your control. I don't know what stresses you are under and I am not trying to belittle them by saying this. It's just like most things with POTS, it's easier to address the thing that triggers the symptoms than fix the symptoms once they have started.

  18. Firstly, I wouldn't worry unduly about the weight gain - it will be worth it if you feel better.

    Cracking the exercise issue requires a lot of patience. There is no one solution for everyone, so it's a case of trial and error. I am, of course, making the assumption you are well enough to be exercising in the first place. My general rule is start slow, keep it low intensity and for a relatively short amount of time. Little and often. Compare what you can manage now to doing nothing rather than the 2 hours you could do before you were ill.

    Maybe walk more or do a few chores around the house before embarking on formal exercise. This will test whether you are ready for exercise. Do you feel better for doing this and a bit more energised? I hope so, but if not, it's probably too early to be exercising and I would take professional advice on rehabilitation.

    Even during a good patch of health, I usually feel tired and lacking energy. Sometimes I am still able to exercise like this and will feel better afterwards. Sometimes exercising makes me feel much worse. I wish I knew when it was best to exercise and when to take it easy! Whereas in the past, when I tried to start exercising I tended to go a bit mad in the gym, or try an hour's aerobics class and make myself ill for months, the only thing I have learned is that it is best to err on the side of caution. And if you start feeling worse when exercising or a lot more tired afterwards, my advice is stop and recoup.

  19. Yes, this is my experience. My local hospital is only small, so I tend to get referred for certain tests requiring more expensive equipment to the next biggest town, and then when they haven't got certain facilities, get referred on again until you get somewhere like Queen Square. And at each stage, everything is retested. I think this is the protocol to ration the most expensive facilities, but I find it incredible that no one looks at individual cases and pre-empts those that are likely to require several on-referrals.

    I think some of the retesting occurs because the hospitals won't share the test data (only general correspondence like letters written to GPs etc). Most only keep test data for 10 years in any case, so I have also been retested at the same hospital due to 10 years lapsing from an original test. It is so annoying and, particularly for anything neurological, has very long waiting times. Perhaps there is a good reason, but I agree it comes across as if they don't trust their colleagues and have to prove everything from scratch.

    I would go as far as to say that in some cases I think it is a sign of sloppy practice, and I have stopped certain inappropriate retesting by (politely) challenging their clinical reasons for retesting with the same fact pattern. If there are good reasons I am open to hearing them, but equally this innocent question has shamed a few of my doctors in the past who couldn't come up with any reason.

  20. There is struggling through work during a bad patch, and there is long term struggling without an end in sight. I sense you are heading for, or already in, the latter category and I feel for you because I've been there and it's miserable. I'm sure you will have already weighed up the alternatives in terms of working hours and career change and perhaps there is an answer there whilst you are in poor health. It doesn't have to be a permanent solution. I see there is an issue with health insurance - I'm afraid I don't understand how all the US health insurances and sick pay are linked, but I appreciate this would be a big concern. For what it's worth, here are a few other things I have considered and have brought me some comfort:

    I need to work X more years to get enough money to secure my future and then I can downsize my job. X isn't a very big number, and I can cope with the thought that there is an end in sight in the not too distant future. It may be that when I get there I can manage in my current job for a bit longer which would buy me a better lifestyle in the future.

    Contract work, so I would work full time for, say, 2 years and then take a year off so at least one out of the three years is available for things other than work.

    Re-evaluating my spending - if earning the money is making me so ill, what is so important that I need to be earning this money? I cut back on luxuries and saved money.

    In the end, an unexpected (but very welcome) improvement to my health plus some modifications to my job got me out of the worst of it, but the situation remains precarious and I am pleased I evaluated the alternatives because they give me comfort that there is a way out if I need to take it.

    Best wishes.

  21. Hello Nancy

    I'm so sorry to hear you are having a bad time. Unfortunately, being unable to attribute a bad patch of health to anything is pretty typical and it is one of the most frustrating things about POTS. Don't blame yourself - this is just how the illness is. Hopefully with the medication you have, this deterioration in health won't last too long (i.e. it probably won't be as bad as when you first got ill).

    I don't have bad GI issues with POTS (I know there are plenty that do on this site), so I don't know what to recommend in terms of keeping food down. I can only imagine how much worse you must be feeling if you can't eat properly.

    In terms of the fatigue, aches, dizziness etc I find it best to lie down as much as possible when I'm at my worst. When I start to feel a bit better, I do a bit more (eg, walk short distances, potter round the house) and gradually get back to normal. This can take weeks/months and is not without setbacks, but I do get better and can lead a pretty normal life most of the time.

    I hope you start feeling better soon.

    Best wishes.

  22. I have a similar build to you, but don't have problems with gastroparesis and tend to eat a lot.

    I have been on and off florinef for several years. I find that any weight gain occurs in the first few weeks of taking florinef (within 2 to 4 weeks). Once I put on a stone, but then other times it has just been a few pounds. I can then take florinef for years and there is no further weight gain.

    Inevitably, if I start taking florinef when I'm at the lower end of my usual weight range, I put more weight on. I find I have a noticeably increased appetite on florinef, so basically it occurs because I'm eating more than usual. If you are hardly eating, it seems odd that you have put so much weight on. Having said that, I wonder if you are like me in that weight gain and loss tend to be rapid and quickly adjusts to new circumstances.

    Hope the surgery works this time

  23. Interesting question. I was very pleased when I finally got the diagnosis. Has it improved my treatment? Probably not, but only because a previously doctor had already gone down the route of trying to fix the symptoms and since there is nothing to cure POTS, having a label didn't change the need to fix those same symptoms with the same drugs.

    Did the diagnosis make me feel better? Yes, it was nice to acquire the right label psychologically and I don't have to justify to people that I do feel ill. And though I was certain that most people don't feel the way I do, it was good to have that acknowledged by the medical profession. I feel I gained a certain amount of respect from my doctors instead of scepticism (and probably despair that they previously didn't know what to do for the best).

    I would take the best of Western and Eastern medicine to get to the best answer for you. My experience with Eastern medicine is that, in principle, it sounds great and it can be helpful, but it also has a lot of limitations in its application. With the best will in the world, I don't see what Eastern medicine has to offer to replace, say, midodrine.

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