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abnel

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Everything posted by abnel

  1. That's awful the Lexapro is so expensive without insurance cover. So sorry to hear you can't access much needed treatment which makes you feel so much better. I hope you get into Mayo and your insurer covers you. That would be a good Christmas present! Yes this is a crazy time of year. I am trying to avoid all the Christmas hype this year - find it way too stressful. Haven't been to a Christmas party yet and am grateful for it! Sounds very unsociable of me, but my symptoms get worse around this time of year anyway (summer) and our weather is so unpredictable. Hope everyone else is doing okay with it all.
  2. Is Lexapro still helping you at all Dani? If I recall it was helping initially but then your allergies got out of control. Has it been since the allergies flared up that the POTs has been worse?
  3. I have been taking 0.1mg Florinef since March this year with some success. It has consideraby reduced the pre-syncope and light-headedness I was experiencing over summer and also helped a bit with my heat intolerance. As the months have progressed, I've been loosing more and more potassium, to the point where I am now supplementing with 6-8 potassium tablets per day. To give you an idea of how much potassium this is, in I think John Hopkins' publication on POTS, they recommend supplementing with 1 potassium tablet to every 0.1mg of Florinef that is taken. My doctor has strongly advised me to start weaning down to 0.05mg Florinef. Can anyone share any tips on the best way to start weaning off it? I am anxious about this because I was prescribed 0.2mg initially and was on this for only 1 week but due to intracranial pressure had to come off it immediately. When I came off it so suddenly it caused awful adrenal surges, tachycardia and my severe chest pressure returned. On another note, I have been prescribed some Chinese herbs by a Chinese doctor and they contain licorice root extract. I have been putting off taking these until my potassium levels returned to normal, I was thinking of delaying taking them once I've weaned back to 0.05mg Florinef. My doctor tells me lictorice can increase potassium and that the herbs may actually work well with Florinef to stabilise my potassium loss. However, from all my reading licorice root can reduce potassium levels, especially when taken with corticosteroids. Does anyone know if licorice increases or reduces potassium??
  4. I haven't tried raw nuts and seeds. Are they easier to digest than cooked or dehydrated nuts? Will keep you posted if I find out anything else about food specifically for dysautonomia. Someone should write a book! Just looking at your signature you have accomplished a lot through dietry changes. Good for you! If you ever find anything that helps your POTS/OI I'd love to hear about it. I've also cut out coffee (gives me bad tachy) and I don't get the crashes anymore that I used to with coffee as my crutch.
  5. Thanks so much Dizzy for sharing your thoughts with me. It's good to be reminded that we all have individual requirements to take into consideration. I found her story compelling and I viewed a lecture she gave on Youtube (there are a whole series up there). In the "Assigned Interventions" column of that link you sent me they describe her diet as based upon the Paleo diet. My problem with the paleo diet is that my digestive system does not process nuts and seeds properly. I would have to have my nuts crushed or blended somehow in order to absorb them. I guess we have to make our own path on this journey!
  6. I know a lot of us go gluten free and dairy free, but I'm looking for a book that provides more specific guidance and recipe ideas on how to get at least the daily recommended intake of all the essential vitamins and minerals. I found a book called "Minding my Mitochondria" which looks very interesting, written by a doctor who has secondary progressive MS. Within a few years of starting this diet she went from reclined and considerably disabled to being able to ride her bike again. She believes that mitochondrial dysfunction plays an important role in MS, Parkinsons and other neurological illnesses as well as potentially a range of other chronic illnesses. Would love to hear your ideas.
  7. I firmly believe that a series of traumatic events in my life (a series of bereavements), genetic predisposition and a virus being the straw that broke the camel's, caused POTS in my case. I am not at all suprised that POTS happens to us after traumatic events. Sorry to hear you are dealing with this at such a young age Puppylove. It must be incredibly difficult.
  8. I suffered severe chest pressure 24/7 for first 12 months of POTS, not alleviated by lying down. All cardiac investigations came back normal. The worse the chest pressure, the worse my breathing got too. (I now have breathing issues completely unrelated to chest pressure - strange how things change). The chest pressure seems to have improved over time and is not severe all the time like it used to be, thank goodness.
  9. I didn't know what a tilt table test was for when I got tested. The doctors refused to tell me and I decided I wouldn't bother trying to find out before the test. During the TTT, I kept thinking this must be how astronauts must feel and I said so at the time. It was the wierdest feeling having all this G force on my body as the table was raising to upright. It was sort of like a roller coaster ride but not much fun, more the feeling of being a lab rat. I felt nauseous as the test went on which is rather bizarre given nausea is not my normal symtom. My HR was fast and I could feel it. They asked me to tap it out for them which I did with great precision. My HR and BP stabilised and weren't going anywhere after about 10 mins (up or down) so they discontinued the test and diagnosed POTS even thought I hadn't quite gotten the 30 point rise.
  10. Hi Jennifer, I am so sorry to hear you are going through such a difficult time. I am sure there are many members who can relate to your story. Having multiple episodes of syncope daily or weekly must be very frightening, especially when you injure yourself in the process, and feel you have set yourself back again. With POTS, every step taken towards 'recovery' or more functionality must be taken very slowly, much slower than most people have the patience for. I think with what you are going through every little baby step, be it the abilty to sit upright in bed for longer and longer periods must be recognised as a step in the right direction. When you are in a POTS hole you have to view the activities of daily living that we all take for granted as exercise in themselves. No doubt your heart rate will be right up there, even with crawling from the bed to the bathroom or kitchen, etc right now. Then slowly over time, you will be able to increase what you can do around the house, and with time and the care of medical professionals, you may be able to sit upright more and more, then eventually do some standing and walking. All of these things will hopefully build on themselves, enabling you to be more functional as time progresses. Some other members have posted about the sort of very gentle exercises you can do while lying in bed. I think Sallyblooms had some good tips severals months back. These may be too much for you right now, but are things you can work towards doing in the future. Sending gentle hugs your way and hoping you feel stronger as time passes.
  11. Thanks very much for clearing that up Rama re the light headedness = dizziness according to research. Now I know why the doctors keep telling me I'm dizzy even though the room isn't spinning for me!
  12. While it's interesting the 2 research studies found that patients with SOB tend to have high tachycardia, when I have shortness of breath it is not related to high tachycardia. My doctor thought it was tachycardia causing SOB and prescribed valium to reduce my resting heart rate. Valium reduced my resting heart rate from 85 to 70, I got even worse shortness of breath, and nearly passed out! He then realised my SOB had nothing to do with tachycardia. When I have had episodes of very fast resting HR I have ALSO felt short of breath. But the SOB I am talking about that happens normally and on a daily basis for me is something completely different to the type that is related to high tachycardia.
  13. Rich, it's interesting as you and I have similar symptoms (moderate to severe shortness of breath) and I rarely get classic "dizziness" either. I get giddy occasionally, the feeling of standing on a rocky boat or the feeling you get when you have just come off a rocky boat and you still have your 'sea legs', but not the dizziness where the room is actually spinning and you feel quesy. I also get light headed from shortness of breath, just as you describe it. Perhaps I am confusing the two definitions when really a doctor would view the two as the same symptom. Having had both though, I would say dizziness affects the brain/eye sight and causes nausea, whereas giddiness affects the entire body (feel like the entire body is swaying) but there is no nausea unless severe.
  14. Beggiatoa, one of the members here mentioned she had significant help with SOB by taking Mestinon, causing her to think the mechanism behing her POTS is related to acetycholine. Nicotine can also apparently help SOB for similar reasons. I haven't yet been game enough to try patches, but will if I become desperate enough. Interesting what you say about SOB being muscular in origin. My Osteopath has noticed than when I inhale the diaphram muscles which contract to expand the lungs to cause inhalation are quite weak compared to her other 'normal' patients, and she postulates that that is why I don't feel like I can ever take a really deep breath (and also probably why I can't sing properly anymore). My respiratory guy also couldn't find anything wrong with me after doing lung function tests, etc.
  15. Yep, me too. Bright red when I let arms hang at my side for too long. Immediately bright red every time I put them in hot water to wash dishes. It was only after seeing how red my hands were after washing dishes that my family finally realised I wasn't making POTS up. From that time on they became very concerned about me washing dishes as they didn't want to make my hands turning red. I felt like telling them that's the least of my problems, actually the standing to wash dishes is much worse - but I'll take any sympathy I can get from them!
  16. Dani I had this symptom 24/7 for the first 8 months of POTS ranging from mild to severe. The ONLY thing that ever made me feel normal was to sit as a passenger in my husband's car and have him drive and drive. The motion of being in a car made me feel like I was completely normal almost and I didn't feel giddy at all. As soon as the car would stop at a traffic light I couldn't wait for the car to start moving again. This is truly bizarre as I now go through periods where I can't stand being in a car because the motion makes my shortness of breath worse. I really don't understand POTS!!!
  17. I have this too, and my orthostatic symptoms are also MUCH better in the evening. Some nights I feel almost normal. Mornings and early afternoons are always much worse for me. My exercise physiologist who exclusively treats POTS, ME and CFS patients told me that almost all of his patients have observed and commented on this same phenomenon. There is a medical reason for this, just wish I could remember what it is.
  18. hi Rich, like you, shortness of breath is by far my worst symptom. In fact, if it wasn't for that I might be far more functional than I currently am. I am still in the process of trying to work out if the mechanism behind my shortness of breath is related to my POTS or whether it is a completely different disease process. I get shortness of breath even when my HR and heart rate are completely normal. The only consistent triggers I can find for my SOB are: eating, exercise, heat/humidity, stress. I do not have traditional asthma. I have been seen by immunologists and pulmonologists. With the heat it feels like my lungs are collapsing and I have to really suck the air in. But other times it is quite the opposite where I find it hard exhale rather than inhale. Sometimes my SOB is so bad I can't talk, swallow or eat. Singing is definitely off the cards and has been that way for 2 years since I came down with POTS. The chest weakness you describe is something I can really relate to. I tried ventolin (albuterol) and it only helped briefly for 20 minutes but gave me tachy. I tried Sodium Cromoglycate and that made my airways close up. The major thing that has helped is H1 and H2 blockers (claratyne and zantac). I never thought I was someone who could possibly have mast cell disease as I do not flush normally, I don't break out in hives or rashes, and my GI complaints are my least problematic. However, strangely enough the H1 and H2 blockers gave me significant relief to my air hunger. I also threw in Quercitin which is a natural mast cell stabiliser. I am seeing a haematologist in late December to hopefully get some answers. I agree with Godsgal that there is little harm in trying H1 blockers. I did notice I am more tachy if I take therapeutic doses of Claratyne for treating Mast cell problems, but if I stick to baby doses several times a day I seem to be okay. What makes you think liver could be involved in breathing issues? To answer your question - I have no idea what 'type' of POTS I have. In my country most specialists I have encountered don't believe that categorising patients according to POTS subsets is useful in forming a treatment plan, therefore none have ever bothered to test me. I have heard that other mechanisms that could potentially cause breathing problems could be related to acetylcholine. Some people have been helped by increasing their acetycholine levels. I am also trying to investigate this but having a very difficult time knowing what tests to have done. Unfortunately I can't get the acetycholine receptor antibody test done in my country and the blood sample has to be sent to the States or the UK ($4000 or something ridiculous like that and my insurance won't cover it). Something else I recently discovered is that some people with EDS also have breathing problems, related to lax lung tissue vessels. I am not a flexible person and don't believe I have this problem but that is another path I'm thinking of going down to investigate.
  19. I also have hypotension and the ONLY heart rate lowering medication any cardiologist would put me on is Ivabridine. They would not even consider a beta blocker for someone like me with hypotension. I believe Ivabridine is not intended or designed to lower BP. I didn't end up taking because I wasn't comfortable until I had a definite DX (hadn't been DX'd with POTS at that time).
  20. It significantly reduced my pre-syncope and light headedness. They were my number 2 and 3 worst symptoms until I started Florinef. My specialists believe it only works so well for me because I have always been hypotensive and it raises my blood pressure to normal 120/80.
  21. Hi Brye, I use 20-30 mmHg medical compression hosiery but only when I feel I need the extra support. I did wear them for a week at one point and felt like the effectiveness was waning plus I got athlete's foot. The sports compression tights are great because they are footless. I got them from wiggle.co.uk and I think the brand is Orca. Very high compression though and if I wear them too long there is a build up of pressure in my chest.
  22. Does anyone know the main centres in the US where you can get both the acetylcholine receptor antibody tests done? I don't live in the US and in my country they unfortunately don't do these tests. I have been told I'd have to get samples taken and shipped over to Mayo at a cost of $4000 in courier fees. The samples need to be put on ice for the entire journey (or something to that effect). I think I read somewhere that these tests can also be performed in the UK and there are cheaper courier costs involved. If anyone has information for the UK or Canada that would be great. And Tachy, did you ever have these tests done?
  23. I love my sports compression hosiery but they have even more compression than the medical compression hosiery and I can only tolerate them for short stints. Fantastic for working out though and for those really bad days.
  24. Hi Kits, it's so nice to see you and other older members return to this forum, whether for support, updates or good news, etc. I truly understand what you mean about the anxiety sometimes getting worse or returning the longer this goes on. I haven't had POTS for as long as you, but I know I am more anxious now than I was in the beginning. In the beginning I was told it would all go away and I clung to that hope and had reassurane of cardios that nothing was wrong with my heart even though it felt like I was having a heart attack every day. The more I reasearch into this dreadful illness the more I realise how little doctors know about it and that in itself makes me feel frightened and alone. Sometimes I think I was better off not knowing what this is and having a label for it. But at the same time I am glad I have a label because otherwise I'm sure no one would have believed I have a genuine medical condition and I wouldn't have found the help I've received from doctors and from this forum. Hugs to you.
  25. Yep, I'm meant to keep mine in the fridge too, but have left mine out on occasion for 1/2 a day to a day and it doesn't appear to have affected it.
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