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blueskies

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Everything posted by blueskies

  1. Definitely, "WELCOME". It sounds like you quickly worked out a healthy approach to this. Well done. Blue
  2. Hi Naomi, i spend my days at home in a soft t shirt and underwear that sits well below my waist. I don't get diarrhea. I have the opposite problem. Anything around my waist now causes abdominal pain to get worse. Sorry to hear you get a migraine when you put on a bra. I have really never worn a bra - I'm now 58 and could really do with one, but the pressure around my midriff is even more intolerable. Blue
  3. Hi Katy, Your point about MVP is a good one. Specialist says I have it but I am waiting on echo results to confirm if it is MVP or another thing. Blue
  4. I have a lot of those symptoms, down to the weird ears ( finally an explanation for them, it seems). But not sure that collecting another diagnosis, if I do qualify, is going to do me any good. Thanks for posting the link, little blue Jay. It was informative. And easy for a non medical person like me, to read. Blue
  5. God, I've edited and rewritten this post and then 'lost' it so many times that you think I'd have something profound to say. I don't. LOL. I don't think there is a person walking this earth that doesn't have psychological issues -- not even the Dalai Lama. And anxiety comes hand in hand with POTS for so many of us. Like myself, many people have received a mis-diagnosis of anxiety disorder before being diagnosed with POTS. I think anxiety might be the most common misdiagnosis in the case of POTS. I suspect that if you find yourself walking next to the doctor without a wheelchair in sight, that if you give yourself permission to sit on the floor If you need to, your anxiety levels will drop. And if you need to sit on the floor your doctor is certainly not going to be surprised. I find this with myself. I'm more anxious when there is no where 'suitable'place to rest when I'm feeling potsy. i think that is probably a very normal reaction. Less anxiety about face planting, (luckily I don't do that, knock on wood but other symptoms make me feel very ill), will not add to the effort of walking and standing with pots, which is hard enough already without the anxiety. Sometimes benches and chairs one can find, if lucky, to sit down on when overcome by symptoms while walking and standing aren't all that great for me because my feet are still down. I'm actually having to 'relearn' that it is okay to sit on the ground if I need to. I was quite comfortable doing that on the rare occasion and then I became very concerned about 'causing a scene' and 'drawing attention to myself' if I found I really need to sit down on the ground in a building or in the street. I'm relearning that it's okay to do this if I need to. Giving myself permission takes off that added layer of anxiety. Practice at measured calm breathing, as Ice Lizard also suggests, is very effective at calming me. I just need to practice doing it more often. I used to practice all the time but I got depressed and doing the things that are good for me just seemed too hard. I'm picking up those things and doing them again. Slowly and often almost unwillingly but I'm getting better at doing good stuff for myself, once more. blue
  6. I found zyprexa (an anti-psychotic, I'm not psychotic but I do have anxiety and depression issues) to have same weight gain problems. massive weight gain. I was on and off it for over 10 years. The down side to it was that it caused massive weight gain. But the upside was that I slept much better, it helped with my constipation a bit yet has anti-histamine properties (usually anti-histamines shut down any bowel movement completey). I was well rested as I slept so heavily even though I still woke often I'd go back to sleep swiftly, and much calmer and just felt generally better about things -- anxiety and depression wise. I was on the lowest dosage possible. 2.5mgs. I was dizzy to begin with but that soon wore off. Any dose higher than 2.5mgs caused me greater dizziness. I was able to get fit -- muscle wise etc. -- for the periods I was on it. But I had to come off it (for what looks like for ever) at the beginning of the year because it started to cause quite noticeable body jerking. I often get small jerks and twitches but these were something else -- I'd be lying down and my arm would suddenly lift up swiftly about 6 inches and then fall again, for example. This is a possible bad side effect of the drug and my doc wanted me off it straight away. I've managed to lose some of the weight I gained from this drug but not all, at least not yet. I do miss it's very positive side effects, though. Oh, it did make my sleep apnea worse. Which was not good. Another reason why I had to stop. Although it was probably also the huge weight gain that increased my sleep apnea problem. blue
  7. Hi goshi, I hope they are able to come up with treatments that help you. It can be a relief, i found, to be in hospital to trial new meds. Blue
  8. Hi mercifullgrace, And welcome. I'm so glad you have found a way to cut short your migraine pain. You are very perceptive about what is happening and what you can then expect. Blue
  9. Thanks chaos, For posting about mast cells being tested when you had your colonoscopy done. I had that procedure more than eight years ago when my bowel completely stopped working (no cause was found and I still struggle to keep it moving) but they did not know back then to test for mast cells. There aren't a lot of us, it seems, that have mast cell/histamine problems who experience constipation. From my observations of the reading I've done and what is posted here, it has seemed to Me that most people with these problems have the problem of too much Motility as opposed to not enough motility. Most of us seem to get plenty of abdominal pain though . Blue
  10. Hi goshi I realized we were in different countries . I see that mistake all the time, too. What I was trying to say in my brain fogged way is that perhaps in Austria sodium cromoglycate would be available from a compounding Chemist? Just as it is here as long as one has a script from the doctor. Blue
  11. Hi lyla, There is a blog called livingwithbob whose owner, Michelle, just did a post a week or so back on compression stockings -fashionable ones. You may want to take a look at this dysautonomia blog. I really like it. Highly amusing and very entertaining 'journal' about her own POTS journey. Blue
  12. Hi gosh, In australia you need a script from your doctor for it and a compound chemist makes it up. I think it used to be available in name brand form here at one point, but not now. Check with your doctor about using the nasal spray if no one else here has tried it, maybe? I have read about it on the net and thought I might see if we have it here and give it a try myself. I imagine it would be a lot cheaper than the capsules the compounding chemist supplies. Blue
  13. And sometimes right around my back. It feels like my insides are trying to push through my rib cage in a thick band like pattern. It's now worse when lying down or when sitting. Standing will relieve the discomfort for the most part but, obviously, standing up continuously is out of the question. I first noticed this last year but lately it seems to be a more continuous problem. No doc, neither my GP or my gastroentologist, have offered up any explanation. The best I've got is 'abdominal pain is common in POTS.' TO which I think, 'duh'. I've had 9 plus years of different types of abdominal pain. Does anyone else get this sort of pain? Blue
  14. Can I ask in what way, Chaos?Kitt, I TRIED GASTROCOM over a year ago I think it was. But it really made my migraines worse, as does some other meds including some asthma ones. But I was taking a full capsule and would like to try it again, starting really small dosage and work up to see how I go. It means a trip back to the allergist -sigh- for another script as the gastrocrom/sodium cromoglycate I had went past it's use by date. Grrrrrr.
  15. Don't worry Becia, my auto correct is driving me nuts but I Won't turn it off as I'm determined to conquer it. I'm using a Samsung tablet as the screen doesn't seem to aggravate my vision and migraines as much as my laptop or desktop plus I can lay down and rest my neck while typing. I do, however, accidently hit the 'like this' button with my thumb regularly but am not aware of it until I get the message that I've posted the maximum likes for the day. Blue
  16. I sometimes go into what I feel must look like a sort of 'knees up March.' Having to force my knees up into an unnatural way to walk. At other times I can barely lift my feet enough - I'm shuffling but not even doing that well. To some extent walking more increases my ability TO walk more. But then I always, eventually, hit the brick wall after days weeks or sometimes months were walking anywhere is problematic and walking for exercise goes out the Window. At some point I get to start a walking program again, sometimes achieving a decent level of fitness only to experience the rapid decline into not being able to walk far or 'properly'again .... it's a bugger of a cycle and is wearing me down. Blue
  17. Hi Melanie, I missed this post of yours last year. I'm so glad I got to read it now. Thank you for making the effort to write it. Like Rachel, i hope you are doing better. And I echo her -please post when you can. Blue
  18. Thanks Goshi, very helpful. I never used to worry when my BP was always low to normal range but now it's swung around the other way I'm having to get used to the change. I think I may be one of those people that should not have a BP machine as checking bp is making me anxious and that just pushes up my BP readings making me more anxious and so it goes... Blue
  19. I had an appointment with my Gp a couple of hours ago and bp reached severe levels - my migraine had been giving me a world of pain. Plus i couldn't focus my eyes (worse than usual) and had migraine induced vertigo. We are decided that it was safer to go back on my old bp med - micardis (telmistartin) and for me to try to live with side effects until I see my POTS doc again for a review. I am 58, postmenopausal, and don't want to risk migraine/high blood pressure stroke - which is something a friend of mine, who was also a long term chronic migraineur like me luckily survived some years ago. I don't like side effects of the micardis but will suck them up for now. Thank you all for your responses. Blue
  20. Hi little blue Jay, I have problems with laxatives. For example, senna and coloxyl cause my erythromelalgia to flare. (I just took it for a week, in large doses, as i was desperate and had 2 decent bms eventually but skin was burning and hot and it will take a while for that effect to clear my system although as soon as I stopped it laxative pretty much stopped. It's a worry.). Movicol causes skin flares and almost instant migraine. I think the equivalent in the USA is Mirilax, but I'm not sure. I had an anaphylaxis reaction to another type of laxative. I was doing okay for a while just using glycerine suppositories but they have run out of power or my constipation is getting worse again. I wish I could help you more but my gastro doc says do what you have to. Not exactly helpful as I've pretty run out of options. I'm thinking about asking for mestonin - a pots med -but side effects can be pretty daunting - from my reading. The good side effect is loose bowels and it worked for one other constipated pots person, that I know of. Blue TMI coming: If you don't mind my asking, what did anyone tell you for the chronic constipation? I have that too. All my doc told me to do is 'take Lax-a-day till your poops are the thickness of your thumb'! Great, till I get dependent on it
  21. I sit both ways. Lol. I'd prefer to sit on the floor but age and a back operation have caught up with me. A good doctor notices much, I've found. I've noticed that when I have to sit with my feet down I automatically curl up and tense my toes. My body trying to keep the blood pumping, i suppose. Blue
  22. Thank you people, I was on medication for bp but ceased it with docs permission. I just took it first thing when I got up and it was 145/95. Back to the doctor I guess. I have had rolling migraine and erythromelagia pain for days, increasing and decreasing in intensity so I think pain levels have pushed bp readings up. Last week the readings were pretty stable and my pots doc did not seemed concerned about them. As you said looney mom, it's a pots thing, as he pretty much said. I do have problems with medicating it. Thank you all, for your input. Blue
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