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Everything posted by Csmith3

  1. One of my relatives has EDS3. I don't know if she had problems in her teens, but from age 20 until she was perimenopausal, she had no POTS symptoms at all. During the perimenopause, she suddenly got POTS symptoms. I could be uncharitable and say her symptoms probably weren't as bad as most people's on here but, of course, if you aren't used to it and haven't adapted your life to accommodate POTS, then it is a shock to suddenly feel ill and have difficulties holding down a job. The good news for her was that after about 2 or 3 years, her symptoms disappeared and she was fine again. My POTS
  2. Rach Yes, I had exactly the same problem with urinary retention. I think the problem is that the drug binds alpha receptors and some of these receptors are at the base of the bladder. Mine developed as time went on and the dose was increased. I got the feeling it was only going to get worse with time rather than better. I mentioned it to my consultant. He didn't seem surprised. The decision to stop taking midodrine on a regular basis was made for me due to other reasons (my body seemed to get used to the higher blood pressure and my heart rate compensated by going too low). I still take i
  3. It depends which preparation you have as to whether they need to be refrigerated. Only the refrigerated version is now available in the UK. When it was introduced, there was a lot of fuss made by people with Addisons and what were they supposed to do if they were travelling etc. The Addisons Society paid for some research that showed that provided the tablets were not exposed to temperatures in excess of 25 degrees centigrade, they were still over 95% effective even after 28 days out of the refrigerator. The research did not test what happened after 28 days. So unless you are located some
  4. I wish I knew. In theory the answer to your question is ivabradine. In my experience, I can either control HR or BP in the medium term. In the short term I have controlled both and felt great, but it has only lasted a few weeks. I can only assume that my body then attempts to compensate for the medication and I end up back where I started or worse. On proamatine, in the medium term, by BP rose from low/low normal to high normal. My HR initially reduced to about 80, but then kept on reducing to 40 or less so I had to stop taking it on a regular basis. I still occasionally use it for a quic
  5. I find that walking is good, but I live in an area where there are no hills! If I try walking in an area which is less flat, I tire and get breathless very quickly. I suppose that is why some of us don't mind treadmills as the incline can be controlled. Swimming is also OK though, again, I tire quickly and it seems a lot of hassle for 10 - 15 minutes swimming. That said, I do find my fitness improves and I feel better in myself. For reasons I have never worked out, it does result in more weight loss than I would expect given the short time I swim. I was advised to try pilates. I think it
  6. Yes, in my case the bad patches are worse and last longer with age. I also think that as we get older, it is harder to put life "on hold" to concentrate on recovering, which probably lengthens the bad patch. I saw your other thread about dealing with the recovery period. I prefer to keep to a normalish routine at night; going to bed reasonably late and getting up as if I was going to work, or maybe an hour or so later. I find that being up and about in the morning helps in the long run, horrible as it is at the time. I'm not talking about doing too much. Just sitting up and perhaps potter
  7. At first, my heart rate only went down about 10 points on midodrine. My blood pressure went up and I felt much, much better. Unfortunately, after a few weeks, my heart rate gets lower and lower and I feel worse than without midodrine. I'm not on a SSRI, but I am on an antiarrhythmic. I tried all sorts of combinations of midodrine with or without other drugs, but could not stop my heart rate dropping after a few weeks. The metabolism of midodrine does depend on many factors, including other drugs you are taking which may use the same enzyme to break down the drug. In my case, the drug wa
  8. I ended up with stomach problems on florinef. I guess it irritated my stomach lining to the point whereby I couldn't sleep with the pain and it was making me vomit so I had to stop (I never got it investigated so I can't be more specific). With hindsight, I should have been more careful to make sure I took florinef with food, though I don't know if it would have made enough difference. I tried taking Zantac(ranitidine)for a week which did stop the problem getting any worse, but it didn't improve the situation either. I suspect I have other stomach issues because I had previously been OK on
  9. Yes, I find it helpful. The effect on my heart rate has remained predictable over the year or so I have taken it - half a pill equals a 20 point drop in resting heart rate; full pill equals a 40 point drop in heart rate (and even this is a relatively low dose, but enough for me). I haven't experienced any side effects. I also like the fact that it can be used on a flexible basis, so I can miss or cut doses, then restart and it doesn't matter. That is useful for me because I have other heart rate issues. I have EDS and midodrine was great whilst I could get it to work without my heart rate
  10. 1. Cardiac drugs to reduce my heart rate. 2. Progesterone-based contraceptives. 3. Having the confidence to say that I have run out of standing time if I start feeling ill and just sitting down wherever. 4. Putting my feet up after having a meal. The best I have ever felt is when I have been able to increase my blood pressure with midodrine and florinef. Unfortunately, I could not tolerate them long term but I still have a significant improvement from the above.
  11. Thanks for that information Pat. I have looked up convulsive syncope and suspect I can also relate to that in some instances, and they would correspond with bradycardia. Jana - maybe you need to see the cardiologist instead! This is all of interest to me since I seem to be getting fainting, general POTS symptoms and (non-convulsive) epileptic seizures and, frankly, even after 20 years of this, it can be difficult to distinguish between them. It makes it hard to work out whether any one particular drug is working because I am not sure what I am expecting it to fix! Anyway, sorry for the thr
  12. I haven't had anything like the seizures you are describing, though I appreciate there are lots of different kinds of epilepsy. I wonder whether yours are something else because they seem to occur when you are standing after having been lying down and I can't think why position would affect the probability of having an epileptic seizure. I get epileptic seizures and find the feelings afterwards of poor brain function, poor concentration and needing to sleep more aren't unlike day-to-day POTS. I would say the distinguishing features of the seizures for me are that afterwards I feel sick and
  13. It isn't what I would describe as pre-syncope. It does sound odd and unpleasant - poor you. Your BP is very low which could be contributing to the symptoms but I am concerned it is more than that. I would definitely get it checked out if it recurs. Do you get temporary respite if you can increase your BP, e.g. by having caffeine?
  14. Sue I am exactly the same. I find the heat radiating from the chest thing weird. If I get a massage, the therapist invariably comments on the big temperature range of my skin. I have been like it for years (in fact, all my life as far as I recall) and it doesn't matter whether I am lying down or standing - I get the same variation. I was tested for pheo and was fine. Not sure what causes it. I think body temperature is controlled by the hypothalamus which is very much implicated with ANS.
  15. I don't have a problem with flying so I would try the long haul option. I have been concerned in the past since clearly there is no option to get off(!) and have gradually increased the flight times over the years to see how I got on. It has not been a problem for me and I tested it to the limit a couple of years ago when I flew to NZ with only a brief break at Singapore. I don't enjoy sitting bolt upright, but it is doable and I find I recover quickly once I am off the plane and walking around. Like Yogini, I don't get any worse on a long haul flight than short haul; it is just more of th
  16. I have started to get more tremors recently which I find embarrassing. When I get a tremor storm, I feel like I am very hot, as if I had a fever. Yet anyone with me says I don't feel hot at all. Do you find this too? I can't say I have ever tried applying ice, and it isn't very appealing (!), though I guess if it works I should give it a go. I was wondering if mine were triggered by sudden low blood pressure. Perhaps the ice is acting as a vasoconstrictor? I tried taking midodrine when it happened this week, but I think it was just too slow to be effective. Thanks for your post.
  17. I can relate to your story, though I don't think my symptoms are as bad or persistent as yours. I don't have an explanation for the neurological symptoms either. My symptoms magically disappeared over the last few years and have recently come back. I have had POTS symptoms throughout the intervening period and they have not deteriorated recently. Therefore, I am reasonably confident that the neurological symptoms are not directly related to POTS. One thing that consoles me is that I think the symptoms were worse in my teens and 20s, so I take some comfort from the fact that they have not p
  18. A lot of small countries have the refrigerated preparation of fludrocortisone. It's just economics. We used to have the non-refrigerated version, but that only has a 12 month shelf life. There were many supply problems because the drug price is so cheap, the manufacturer makes no money making small batches when there are a relatively small number of people (and dogs!) taking the drug. On several occasions, I could not get any from the pharmacy and hospital and veterinary supplies were made available to those with Addisons. The refrigerated version has a 24 month life and, as far as I am
  19. I think your instinct is right and if it happened to me, I would be very annoyed. I would ask him, verbally or in writing, what evidence he has for your diagnoses of depression and anxiety. The degree of honesty in his answer would determine whether I had any confidence left in his views. I feel really strongly about holding doctors to account about this kind of thing. No other profession would get away with issuing such strong opinions/advice without factual basis. I haven't been around much recently so I don't know who else you are seeing, but it sounds like even if this doctor retrieve
  20. The other thing I should have mentioned is about storage. It used to be OK to store at room temperature, but the UK manufacturer changed the preparation and it now has a longer life but, as you know, should be kept in the fridge. Obviously, this is a pain if travelling. One of the Addisons disease patient groups commissioned some research which showed that provided it is stored at less than 25 degrees Celsius, it was over 95% effective for a month. I may be slightly out with the percentage (I think it may have been higher than 95% but will err on the side of caution). The article is now
  21. I found that it took a few weeks to have effect. The effect wasn't dramatic or sudden, but where I would look back and think, actually my symptoms have improved. There was a significant improvement in reducing dizziness, feeling less faint and I was no longer aware of the effort of holding my head up, if that makes sense. It was particularly useful in summer for counteracting the effect of hot weather exacerbating my symptoms. In terms of weight gain, I did have increased appetite and put on about 7 - 10lbs but no more than that and I was on it for years. Unfortunately, I had to come off
  22. Increasing fatigue with the meds is a really big compromise. I understand why you are fed up. Do you feel you have exhausted other cardiac drug combinations? Have you tried combining your heart meds with florinef or midodrine, both of which I would expect a cardiologist would prescribe? It risks the "tired but wired" feeling, but may be preferable to where you are now.
  23. I guess it depends on what has caused POTS and whether there is any scope for that to go into remission. I think that finding the right medication and making lifestyle changes can really help and bring about stability in symptoms and severity, but in my case it did not result in remission. Although I have EDS as the probable cause, my POTS significantly worsened in adolescence. I am hopeful that menopause may bring remission, though I am not sure there is any evidence to support this hope!
  24. Hypertension is uncommon in POTS but is possible. The other thing that is odd is the kidney pain. Has he sustained kidney damage? This isn't something that I would associate with POTS and makes me think something else is the trigger to the autonomic symptoms. Could someone check that out because that might lead you indirectly to the diagnosis. I wouldn't place too much weight on the view of the neurologist. Unless they have the specific expertise in the area of interest, the views don't mean much more than they don't know the answer. I saw 7 neurologists before being diagnosed by one
  25. I would definitely ask for his thoughts about CHF - that's a big thing to raise and then not resolve. Otherwise, I think you are in the territory of expectations management. If your appointment is 6 months away, the doctor may be thinking the situation is stablised as best it can be. You are hoping for something better to improve quality of life which is understandable. I don't know whether your health can be further improved, but you need to have the open conversation with the doctor about your treatment plan, prognosis and expectations so you know where you are. You can always see someon
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