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Everything posted by masumeh

  1. Okay, this sounded probable. Increased activity=>increased sympathetic (ANS) activity=>increased norepinephrine levels=>elevated blood pressure and heart rate. This is in hypertensive people; I wonder if the same chain reaction exists in normal people or which diseases and types of damage it's associated with (some hypertension results from nerve/brain damage from blood flow obstruction during sleep). Neways, here's the article: Changes in plasma norepinephrine, blood pressure and heart rate during physical activity in hypertensive man RD Watson, CA Hamilton, JL Reid and WA Littler We have investigated the changes in plasma norepinephrine and blood pressure and heart rate during a range of physical activities in eight hypertensive subjects in order to determine whether changes in plasma norepinephrine reflect changes in sympathetic activity. Blood pressure was recorded over 24 hours from an intra-arterial cannula. Plasma norepinephrine, measured by a sensitive radioenzymatic method, increased progressively with increasing levels of physical activity. In each subject a statistically significant linear relationship was observed between the logarithm of plasma norepinephrine and systolic blood pressure. Analysis of variance showed that 66% of the variance of plasma norepinephrine was associated with changes in blood pressure and heart rate. These observations support the hypothesis that plasma norepinephrine reflects short-term changes in sympathetic activity. Use of the quantitative relationship described, in conjunction with measurements of norepinephrine metabolism, may help to determine the significance of increased levels of plasma norepinephrine observed in some hypertensive patients.
  2. I just recently (relative to length of disease) found out that my blood pressure spikes with activity. The activity might be something as simple as talking, holding something, or standing up from a sitting position. Heavier activities definitely spike it. Just like you, my bp is usually very low. It may be 95/60 resting, then spike to 160/110 when walking for a few minutes. One doctor told me that this is a sign of general deconditioning that has affected cardiovascular fitness. So he said that if I do rehab, this phenomena will disappear. That was in July. I have since done rehab, and I exercise every day, and have recovered enormously from most of my POTS symptoms, but my HR and BP are still wacky. When I go back to the doctors this coming summer, we'll have some interesting talks I'm sure The norepanephrine (excuse my ridiculous spelling sounds like a viable explanation. Another person here in this forum told me that hyperadregenic type POTS would have this reaction. If I can locate her/his post, I'll come back to this thread and link it. rather technical and I don't recall the exact mechanisms mentioned.
  3. It takes a lot of guts to just to get out of bed some days. Just keep going. You have to find a reason to do all those things again...and that will motivate you. For me, my daughter gets me out of bed each day. Literally, she's the reason I feel like I'm here, and I have to put on a smile and push myself through even if it can never be perfect or near what I want--that's just life. Having a diagnosis, and potentially progressive disease (I don't know what your exact dx is), maybe you are just trying to process that new piece of information. So laundry can wait...because you have something more important on your mind. But it's going to be important eventually to go on with daily normal activities...to push the dx out of your head and focus on what is right and normal or possible. I've recovered now, but when my symptoms were constant and severe, I had this self-talk type motto: "I'm still standing." I would say that to myself whenever I was able to function, but feeling fatigued like I MIGHT faint, or started feeling the auras and signs that I would faint later on. Frustrated thoughts, and reflections about how bedridden I'd been were counterproductive. Instead, I would just say to myself, "I'm still standing," and push through cooking dinner, putting away laundry, studying, reading to my daughter, etc. Until the faint came. And then it came. And then I got up and went on with life again, as much as my energy could tolerate. I think that's basically what we all do. I also had this other thing I'd say to myself about the fainting. Fainting has 3 phases: going to be over, almost over, and over. When I feel it coming on, it's awful, and sometimes accompanied by painful headache, nausea, tight chest, myotonic jerks, etc. But instead of saying to myself, "OmG, I'm gonna faint!" I instead told myself, "Phase 1: Going to be over." And then while it was happening, if I was conscious, instead of "This is so embarassing," or "Why does this happen to me?" I would say, "Phase2: almost over." Afterwards, instead of prolonging the psychological trauma of it, rehearsing, "This is faint number 2,589. When am I gonna overcome this disease?" or whatever, just "It's over." You get the idea. I had fears about going into public, because fainting was a daily thing for me. People here in this forum helped me with that. Many people said, "Why be embarassed? Everybody just wants to help. Nobody thinks badly of you for it." That made logical sense, and is true to reality. Also many of them were very confident going out, fainting out, coming home head held high. So that attitude rubbed off on me a bit. And I really appreciate them for that. It was still difficult to cope with large, loud crowds. But I realized later it was actually the noise triggering the faint that I was avoiding, rather than the people themselves or potential embarassment of fainting in front of them. Glad you are consulting a therapist...that can help a lot. Good luck with your struggles!
  4. You should consult your doctor. That said, I had several side-effects when I tried Mestinon. The main problem was increased urination, which made me dehydrated and caused a flare-up. I also had leg cramps and pain. There were some others too...forgot 'em now though. Bottom line was: no mestinon for me. It's suppose to help us strengthen weak leg muscles, which would ameliorate circulation problems. I did feel it worked, even in just the few days I was on it...but the dehydration was severe, so no way to stay on it. Later, I found other ways to rehabilitate, and that helped. Good luck searching for the right treatment!
  5. Congrats! Sounds like you're doing what you need to do to see a qualified physician. Where are you, by the way? You might try using the physician list on this website to find a POTS specialist in your area.
  6. I gave birth to a full-term, healthy baby girl 6 years ago. My POTS symptoms were extremely bad during the years around her birth (not because of the pregnancy). My pregnancy was considered High Risk, and I received daily injections of blood thinners to avoid clotting (a previous pregnancy had caused clots in my lungs). My liver doesn't function well during pregnancy. I also had hyperemia, which just means vomiting 24X7, so I was on Zofran and had IV fluids every few days for the first trimester and half way into the second trimester. I had preterm labor starting in month 7, so I spent the last trimester bedridden. This was horrible for my POTS because I lost leg muscle. I fainted frequently during the pregnancy, also before and after it. I was deeply concerned about passing out during the delivery, but that did not happen, thankfully. After 2.5 months of preterm labor, the last two weeks of which I contracted every two minutes, my cervix still did not dialate, which showed something wrong with the cervix. So we induced using a cerivical insert, which did not work. My OB had to put me on an epidural, then manually dialate the cervix. In all, my induced labor, from the time the contractions were unbearable to the time my daughter was finally born, was 36 hours. I had not eaten from 7PM Sunday until Wedn. morning, when she was born (they just give you ice chips)...and with ALL of that, I did NOT faint during labor and delivery, or even for three weeks afterward (although I had been fainting every day multiple times before labor induction). Nurses unfamiliar with my case history did not notice anything different about me in the labor ward. I think it's the adrenalin. I was so psyched about getting her out and holding her and seeing what she would look like and stuff, I think it all just worked out in the end.
  7. I think sometimes we are so happy to have a name to call this experience, POTS, we forget that there should be something after diagnosis---called TREATMENT. As my POTS doc told me a few years ago when diagnosing me, diagnosis of POTS is tricky and treatment is even more difficult. But it is possible...and getting at the root of the symptoms is part of erasing the disease...it CAN be beaten...we can win. There has to be a way. There is a cure somewhere. I didn't believe that before...7 years of yuck had me thinking there's no cure for POTS just like there's no way to regrow an amputated arm...I just accepted being tired and fainting etc. But I kept trying whatever the doctors threw at me, and I have now recovered to almost my normal self. Actually I would say I am as healthy as a normal 28 year old (but I'm waiting pesimistically for the other shoe to drop, some illness to show me how much reserve I really have). I've posted before about the meds and therapy techniques that helped me recover. But there are so many etiologies that cause POTS symptoms, what worked for me wouldn't necessarily work for others...but you never know until you try. Keep trying. You'll find the right one!
  8. Hi Sue, Loneliness is one of the hardest feelings to have. I think that we could all handle physical pain much more easily than the psychological pain of loneliness associated with chronic illness. Friends seem to disappear, because everybody, healthy or ill, has their own issues going on and they want to socialize as a fun release not to visit someone who can't have fun because they are sooo down. Most of my friends disappeared while I was sick, and reappeared when I got a bit better. That was interesting....but I know it was me too, I pushed people away because I didn't feel like myself, I didn't want them to see me siezing or fainting or weak or incoherent. I guess it's natural. In any case, I'm really sad that you have lost so much. Life will turn up again though, I'm sure. That's the way life goes...in phases, all temporary. You sound like a strong, loving, fun person, so I am sure you'll pull through.
  9. I've had CTs, MRIs, and EEGs...but it looks like you're talking about something else, huh? (mine were all deemed normal in the end)
  10. Hi all, It's been a while since my University of Iowa appointment, and several months on the new approach of no-drugs, more physiotherapy, and breathing control (lowering respiratory rate). My blood pressure and heart rate still leap when I get a little dehydrated or exercise, especially taking the stairs or holding something heavy. However, I'm far more active, and I think I can say that things are working out well. I just completed my first month of working outside the house in like 10 years! My job is physically demanding because I have to keep moving, circulating my classroom and lecturing standing, for about a 3-hour stretch. I also have to take the stairs several times a day, going between the staff room and classroom. But it's great! I'm having so much fun, getting human contact again. I took a big risk in this step, because I really wasn't sure that my body could stand up to it. But it's actually help further my recovery. My body is getting stronger and stronger. This is part-time work, just from about 10AM to 2PM, but that's really full-time enough for me. A little history, for those who are interested and do not already know me. I was suddenly bedridden, dizzy, constantly passing out, very nauseous at age 20 (8 years ago or so). For a year, symptoms were severe and no doctor could tell what was wrong. Slowly, over about a 4 year period of time, I was able to recover some function, strength, and mental togetherness. I went back to college, distance learning, and struggled through flare-ups and relapses, remissions and recovery periods, for several years undiagnosed. Three years ago, I was diagnosed with POTS. My TTT showed 75% blood defecit to my brain when standing. I was fainting around 1/week at that time, down from 5/day at the beginning of the disease. I was prescribed Midodrine, which I took for 2 years but could not tolerate in the end due to bradycardia. It helped me get some physical strength back though. (I tried many other drugs without success, including Florinef, Mestinon, and some herbals such as Licorice Root, Butcher's Broom, and Tumeric.) When I stopped Midodrine, I was having a huge flare-up during graduate studies, and fainting several times a day and very exhausted all the time, able to function for only a few hours a day. So things had degenerated a bit after having been good for a long time. After about 8 months without any meds, I felt a lot better, but the same old cognitive problems started coming back. I also seemed to be having siezures and tremors in my arms, so I went to a neuro who specializes in Autonomic disorders (at University of Iowa Hospital and Clinics). I saw him this past July. He told me that much of my fainting is from hyperventilation (without anxiety), and my tachy could be curbed if I could manage to keep hydrated and improve my cardiovascular fitness. He prescribed a drug-free, phsysio-therapy centered treatment approach, and taught me how to use biofeedback to regulate and decrease my respriatory rate. I also stopped eating acidic foods in order to avoid hyperventilation that occurs due to acidosis in the blood (body triggers hyperventilation in order to release calcium into the blood stream to neutralize the acidity level). He emphasized that I would need to take things gradually, and consider myself chronically ill but able to recover although he could not pinpoint the original cause of the illness (and actually he seemed to feel that this was an impossible statement to make at this point although there were many possible causes and etiologies). This has worked very well so far. I am also paying close attention to my nutrition and increasing antioxidant-rich foods, which has helped very much with memory issues (like word recall, concentration, etc). I no longer need to do the biofeedback (breathing into my hands) because my respiratory rate has stablized at a normal, lower pace. (In the beginning, I had to do it like all the time, when I exercised, when I took stairs, when I played with my daughter, when I cooked, when I got up after sitting or laying down, when I raised my arms over my head, etc...all the triggers that used to make me blackout.) I do still blackout some times, if I get up too quickly. And I did faint a few times since starting the new treatment approach. But I have a lot more control over symptoms, and I can see that I'm finally winning this fight. It's very reassuring to me that this time, my energy is not dependent on drugs. I'm so glad to be able to share some happy news here. I think we all tend to drift away from the forum when things are goin smoothly, so the overall tone is sometimes focused on crises and degeneration rather than recovery and smooth functioning. That's totally natural, and we will have have those hard times and need the comfort we find here. I was always really encouraged to read others' posts about successes they have achieved despite POTS too.
  11. I too get palpitations after eating, and the fuller the meal the worse the reaction. When I go back to VA to visit my parents, I usually gain weight chomping down my mom's great cooking and all the foods that are availible there and not here (like certain veggies and fruits and most types of fish that I like). I also experience extreme post-meal bloating, which has actually sent me unconscious twice! (For 3-hour, completely comma-like periods.) I think it's vascular laxity in the gut cavity...there are major arteries in there, and autonomic nerves signal blood distribution changes to redirect more blood to the gut during digestion, and less blood gets to the head in that time. I think mine just basically sends everything there if I eat too much
  12. my best friend was dxed with MS last year, and she complained of a funny feeling up and down her spine for seven years before they were able to confirm MS. the first test, even the spinal tap, was negative...but a year later, eye lesions showed up and the MS was retested and finally confirmed. she is very, very slow in progression, so she doesn't feel many symptoms and has a very good prognosis ahead...but very difficult to diagnose. i don't think it's a POTS feeling.
  13. the kidney stone thing...taking large quantities of Calcium can create risk for kidney stones, and taking B is prescribed to prevent the stones from forming. After my mother-in-law broke her hip, she was given this regimen, with that explanation.
  14. Sue1234--the low one was taken in Oct, 2002 and it was 7.2 (normal range 8.7-22.4). the ATCH response test was done in Nov, 2002 and it was baseline 10.8, rose to 21.2, rose to 25.3. Normal baseline and second number is <10, and range for third number is 8.7-22.4. So I guess I had a very fast adrenal reaction and a bit high. I was not pregnant during the initial, low cortisol test. I was like 5 weeks pregnant, unknown to me at that time, during the ACTH adrenal function test that got the high numbers (and cortisol is usually high during pregnancy). I never repeated outside of pregnancy because an endocrinologist reviewed my case and pronounced me normal. In fact, the only tests that were ever dramatically abnormal for me were liver function tests associated with a pulmonary embolism, that and the progressive mono positive. And of course the TTT that showed 75% blood flow deficit to my brain when standing.
  15. only thing I heard about B is to take it w/Ca to prevent kidney stones and that too much can poison you dead
  16. not sure if I should weigh in here...'cause I'm still very confused, but will just mention what I've heard from docs. My POTS doc (a cardio) told me that even if I have epilepsy (which was a dx at one point, then taken back), that anti-epileptic drugs (AEDs) were very bad and would totally screw up my POTS symptoms. His comment was that being on AEDs was worse than having POTS. He said that an epileptic without POTS would probably be treated better by POTS treatment than by the standard treatment for epilepsy (i.e. AEDs). Sara, I'm really surprised that taking sugar helps you...sugar provokes siezures for many epileptics. Also raising your blood pressure would require potassium and salt rather than sugar, wouldn't it? Are you maybe also hypogycemic?? My understanding is the autonomic siezures are part of a category of epilepsy, and there are many, many, many subtypes of epilepsy. In fact, almost every individual epileptic has some uniqueness in their expeirence of the disease.
  17. the heat really kills us. our bodies can't cope. and actually, high heat and humidity is hard on anybody--just some people have more reserve to bounce back. living in a desert climate, I can tell you a lot about heat and its effects. temperatures in my city get up to 50, which is like boil your brain, but its dry totally dry so you don't feel like its 120 degrees. It makes you nauseous though, especially if you make the fatal mistake of eating or drinking in the heat, especially drinking something cold even just water. We've vomitted from that before, when we first moved here. it just flips your stomach. try to stay out of the heat...it also makes us dehydrated and that's hard to come back from if you are a salt-waster and cannot maintain proper blood volume to begin with.
  18. Thank you all for your kind condolences and good suggestions about coping. Iranian medicine is pretty good nowadays, but I don't think they know much about dysautonomia. There is a kind of memorial 40 days after the burial, and my father is planning to go to Iran to attend that. Maybe while he's there, other people in the family will talk more about how many of us have syncope. Looks like it's something nobody talks about but several are suffering from. I'm feeling more like my prognosis doesn't have to be like his, and more hope that my generation will get better medical treatment. I don't live in the US; I'm in Saudia. But since my parents are in the US still, I see doctors there during my summer vacations. I'm also very careful about carpeting in my house, so maybe that will help. I read a lot about protecting oneself from injuries due to syncope or siezures, and I follow most of those tips including no baths, no pan handles over the edge of the stove, no driving, not a lot of tables or hard furniture, padded carpeting, and so forth. I have fainted more than 1,500 times since the first faint in 2002, and I've had significant head injuries but nothing that drew blood. I'm wondering whether my cousin was perhaps attacked and they just thought he hit his head on the wall, because they said it was so much blood and he bled to death from that head injury--I just can't imagine a bang like that just from fainting. But he probably also weighs a lot more than me. Anyway, thank you all again for the kind words and prayers and sympathy. This forum is always very supportive.
  19. as part of my adrenal function test, many years ago while POTS was very highly symptomatic, I received a shot of ACTH which raised my cortisol levels very high. it was actually great for my POTS! I had been fainting every day previous to the shot, and I did not faint for about 2 months afterward (I suppose because of fluid retention and higher blood volume and bp?).
  20. Hi all, A bit sad this week, after hearing about my cousin's death in Iran. This is my father's side of the family, and I know very few of them, so I only remember his sister and not him. But he had a fainting disorder/ siezure disorder/ nobody knows why he would "fall". For many years, I think since he was about 20. He is now in his 40's. He was with his pet pigeons, and had an episode, and cracked his head against a wall and bled to death before the family found him. His mother, my aunt, died many years ago, when he was a child, because of the same condition. She used to have episodes, and she had one in her garden and asphixiated on dirt and died. They took him to doctors, but none of them could figure out why he faints. He just lived with it. The family was cautious not to leave him alone...but obviously nobody can be there 24/7. Anyway, it's really downing me lately, because I have a similar beginning, age 20, like my aunt and cousin. But I'm trying to have a different ending, and this is just draining my optomism. I'm trying to push myself to believe that I shouldn't worry about being ill. I don't know. Any advice on how to get my attitude back to where I don't think about the IFs? I was trying to just focus on what I CAN do, and living my life to the fullest...but this is kind of depressing and I feel bad also that it's a relative whom I never even met or cannot remember because we're so out of touch with the family over there in Iran. Guess it's just altogether sad.
  21. Firstly, thank you all, all of you who read my post, and all of you who posted responses. I've always found this forum to be extremely supportive, full of sympathetic, intelligent, and experienced members all sharing a common goal of trying to understand their medical condition, cope, and perhaps recover. Secondly, for those who were upset with the UIHC specialist's views of POTS, I totally understand. It's so very frustrating, more than words can express, not to know what you have, doctors giving up or telling you it's all in your head, or just not able to help. Having the POTS diagnosis, which I got in 2006 (4 years after falling severely ill), was a great relief and boosted my self-confidence that I knew something was wrong all along (something more than my head). I think what the UIHC doctor is saying, however, isn't that there's no such thing as this disorder, but that it is not accurately understood by those promoting the POTS diagnosis. He kept saying, "It doesn't make physiological sense." He said it just makes people feel better to have a word to call it, but it isn't a good word because it doesn't accurately describe the problem. He told me that POTS has to be diagnosed very carefully, and mentioned that a person MUST have hypovolemia in order to receive a true diagnosis of POTS...but even THEN, he said, the mechanism of fainting for a POTS sufferer is hyperventilation rather than the tachy itself. Tachy exists, but it is not in and of itself dangerous to the person; rather, it's the hyperventilaiton that comes along with the tachy that causes the fainting. So if biofeedback or breathing in more CO2 by cupping the hands around the mouth and nose reduces hyperventilation, then this will stop the fainting even if the person's HR is still sky high. This, as he said, is true IF the blood pressure is stable, according to him that means it does not drop (and doesn't matter if it goes up). I don't know why he seemd to consider the hyperventilation outside ANS problems...like, I was thinking maybe I hyperventilate from ANS damage, but he assured me again and again that I am not damaged in my ANS. He used blood pressure responses in various physical positions and while exercising with an isometric grip thing to assess my ANS reactions....he explained that there is a more accurate and related way to judge the ANS reaction but that involves inserting something into an artery in my arm and it unnecessary because the blood pressure is a sufficient indicator. I challenged him about his views on POTS, which is one reason the session with me took 2.5 hours. I asked him, "What about my TTT? It showed 75% blood flow deficit to my brain when I stand." He said a TTT is a false way to diagnose POTS, that research supporting it is biased, and that researchers in UK and US used very fit soldiers on a TTT and 30% fainted. He said the TTT places a person in an unnatural position, and because they are suspended rather than actively standing, their leg muscles are not assisting in venus return and their blood isn't getting to their brain (much the same as if you have very poor leg muscle tone from deconditioning, which he suspected was the core of my problem). I also asked him, "What about the feeling of blood pooling in my lower legs?" This is something that I previously thought confirmed that the tachy meant my blood flow was out of wack. Blood clearly pools in my lower legs and in my stomach. I can see my stomach bloating, and I feel the heaviness and discomfort of pooling in my lower legs. He said, yes, it pools, but that is not BECAUSE of the tachy. He traced it back to deconditioning, especially cardiovascular unfitness. He also said that some pooling is normal, especially if the person squats and cuts blood flow (like when gardening, he said). Anyone would feel a bit light headed, but their body would quickly adjust and recover. And he said, the pooling does not mean that blood doesn't reach my brain...and that my blood pressure stays stable, and that if blood pooled enough to deprive my brain of oxegen by that mechanism, then my blood pressure would have dropped. I had to admit, that this makes sense...how can blood pooling not cause blood pressure change? He did say that my tachy might be related to dehydration, and recommended that I be very careful to stay hydrated. He was totally unconcerned about my low resting blood pressure, which he had a firm understanding of and actually he predicted my past blood pressure accurately... I used to have blood pressure as low as 60/30 and normally was 85/40. Now it's more like 105/70...and he told me, "I bet your blood pressure systolic used to be at least as low as 85 when you were younger." I was like, "yup, how did you know?" He said it's a sign of longevity, and it's genetic and will never cause me to faint as long as it's stable (stable whatever, high or low, but not bouncing around and dropping suddenly). He said in his animal research, they manipulated blood pressure and heart rate (and he said he did some human research too, but obviously could not push the numbers as far), and found that tachy alone with normal respiratory rate will never, never cause fainting. Only lowering the blood pressure, in his research, could induce fainting. That point was the most convincing to me, because I know that my blood pressure is stable (all my POTS doc's orthostatics never showed a problem in blood pressure, and I've followed-up with him for 3 years now). I know also that my HR is sometimes NOT high when I'm feeling dizzy. And also sometimes it's low, bradycardia. All this said, what the doctor did NOT prove was that I hyperventilate. He did not observe that. He did observe that I have clear signs of cardiovascular unfitness, that I need to recondition, and that my blood pressure doesn't drop. Then he basically used process of elimination to conclude that it was hyperventilation. I would have been much, much more comfortable with his hypothesis if he had proven that I do indeed hyperventilate. However, as I said, I took his advice about the breathing and I have found that my breathing has slowed down a lot over the past month. I never realized that I was breathing too fast before....all the time, even when resting. I think I had a high baseline respiration, and an unacceptably high respiration rate when working, studying, exercising, etc. Now that I'm breathing slower, I feel much more comfortable, especially in my head but also all over my body. It's difficult to describe. But basically a lot of the sick feeling all over has washed away. It really, really helps that I've been able to exercise and recondition my legs. I feel a lot more energy. I have to acknowledge, however, that I am extremely cautious about this improvement. I am not at all sure that whatever caused my initial downfall in health is gone...rather, I'm very suspicious that 7 years of really debilitating illness could not have been caused by hyperventilation alone (which is not what the doctor was saying, but he said it's been disrupting my health since AFTER becoming ill, from what he did not know). I want to look into EDS. I don't know how to find a good doctor to assess that for me. I also want to keep researching about why the CO2 helps so much. Maybe, as someone commented (don't recall the name), reversing hyperventilation is a mechanism that can help even though hyperventilation is not the mechanism that is actually causing the problems. The doctor at UIHC basically said, we don't know all the answers, and especially we do not know why I became sick to begin with....(I still think it was a combination of factors, but mostly the EBV or mono was the culprit...he thought it had more to do with the deconditioning, weight loss, and pulmonary embolism that occurred at the same time)....but he was very sure that I could become better, and that there was no perminent ANS damage. Like, I guess he was mostly concerned with ruling out neurological causes, since that is his area of specialty...he mentioend that maybe I should see a pulmonologist because of the history of PE, and that maybe my breathing patterns changed at that time, but reitterated that pulmonology was NOT his field and that was only a guess. I will look into what another member mentioned here about hyperadregenic POTS causing blood pressure spikes that reduce Ox in the brain by themselves.... The doctor at UIHC was very warm and welcomed further communication and questions. He sent a letter to that effect after the appointment. So I am mulling over his recommendations and statements, and compiling my questions. I really highly value all of your ideas too, here in this forum. We are, in the end, the ones who actually LIVE with this condition and therefore have intiuition and experience about it. I know he's aware of most research out there about ANS related phenomenon because he referred to a lot of it, and specific researchers with whom he is ideologically at odds at Vanderbilt and Mayo...though he also indicated that although they disagree they are really working toward the same goals and have a friendly relationship with each other. Just to clarify, he is an autonomic specialist. His colleague whom he consulted about the epilepsy dx is an epileptimologist. They both said that the EEG was totally normal. I think what happened there was that basically the doctor here in Saudia doesn't really know his stuff. I have no other explanation, because they were all 3 looking at exactly the same EEG test. The UHIC doc was at the very least thorough, and consulted others on his team about both the EEG and MRI, just, as he stated, to make sure he doesn't miss anything. Thank you all again for your comments, ideas, and concern. I will keep everyone's advice in mind...I'm not done searching for answers.
  22. Hi all, I got back from my vacation to the US, and have some interesting things to share from my appointment with University of Iowa Hospital and Clinics. Some background: I set this appt up like 6 months ago, and traveled from my parents' home in VA to IA in order to to see this Autonomic specialist neurologist and his colleague who specializes in epilepsy. As some of u may recall, I have had POTS for 7 years, was basically bedridden the first year and slowly recovered after that to a semi-functional level and now I'm almost fully functional. Nobody really can tell that I'm sick, but I still have episodes that resemble siezures. In February, a neuro did a new EEG and diagnosed me with generalized epilepsy. He told me that my EEG was so bad, he was sure he would see a lesion in my brain; however, the MRI was --thankfully-- clean and clear of lesions or any evidence of brain damage. My POTS specialist in VA is a cardiologist, and I felt I needed a neuro to review my dual-diagnosis of POTS and epilepsy. I refused to take the AED (epilepsy drugs), until hearing from a nuero who understands POTS too. Anyway, that's the background behind the visit to UIHC. The Neuro at University of Iowa had the same EEG on cd that the neuro in Riyadh used to diagnose me with epilepsy...the MRI films also. He also reviewed my Tilt Table Test results from 2006, and EKG stress test, and other orthostatic testing my POTS specialist/cardio used to diagnose me with POTS. The neuro in UIHC really shocked me. He spent two and a half hours with me, taking my history in detail, testing my blood pressure and heart rate in various postures, and conducting a test that used isometric grip exercise to test my autonomic reaction by taking my blood pressure. He said that although my heart rate does fluctuate, it is nothing odd or dangerous. If I just sit between laying and standing, he doesn't get the increase in HR that we got before with my POTS cardio specialist....which was like 65 jumping to 150. Just the normal 10-15 beat increase. He also said that my blood pressure does exactly what it is supposed to do, pushing up slightly in the diastolic (lower number) when standing. So--according to him--if all I need to do is sit for a couple minutes in order to stand up, that's fine and I don't have POTS. He especially stressed that my blood pressure stability contradicts a POTS diagnosis. He said that the fact that I have episodes in my sleep, and laying down, and in every position (rather than only when standing from a laying position) likewise contradicts a POTS diagnosis. Unless my blood pressure drops, he said, a high heart rate can never, never cause fainting...according to his human and animal research. In conclusion, according to him, I do NOT have POTS. I was puzzled. He also reviewed my EEG, and had a colleague who is world famous in his electro stuff work review it. They both independently concluded that my EEG was totally normal and that I have no epilepsy whatsoever. They also said that the way my body twitches and convulses during fainting episodes is a neurological phenomenon known to specialists in epilepsy that is harmless, not indicative of epilepsy, and called "myoclonic twitches" or something like that. Anyway, all normal. So I was like, "OK, I don't have POTS or epilepsy....why do I pass out, why am I always tired, why can't I tolerate exercise or normal daily life?" Basically, he couldn't pinpoint a cause, but said that maybe my breathing changed in 2002 when I suffered a Pulmonary Embolism...but reiterrated that pulmonology was not his specialty and that was just a guess. He did tell me that my blood pressure increases dangerously, as does my HR, when I exercise. My blood pressure, which is normally low, rises to 150/90 and my HR goes up to 150 with only a few minutes walking, or just sitting and holding something heavy. He said that this indicates very poor cardiovascular health, and I should see a phsiotherapist who works with chronic illness to try to return to normal muscle and cardiovascular health. He said it seems that my health took a turn for the worst in 2002, when fainting started, and just never came up to normal. He said that I faint because of hyperventilation, and that he never told a patient that they're breahing too fast except they replied that they were NOT breathing too fast. He said that some people only need to increase respiration rate a very little bit to screw up their carbon dioxide levels enough to mess up their blood flow to the brain and produce all the symptoms I feel: fatigue, brain fog, dizziness, and fainting. He explained the syncope as totally an effect of hyperventilation, which I have not percieved. In the car, driving around Iowa after the appointment, I joked with my mom that it looks like he want to change the name POTS to the name Chronic Hyperventilation Syndrome. I didn't really believe a word of it. But he seemed so sure. And his recommendations were very simple, for how to stop the fainting. He said just make sure I do not breath more than 4-6 times per minute (like wear a watch and track it, do biofeedback or whatever)....and also he said that when I feel warning signs (which I used to call auras)--ike the visual changes (things get blurry) or heaviness in my calf muscles or numbness in my fingers--to cup my hands around my mouth and nose and breath that way for a few moments or until I feel better. He also emphasized that it's important not to let others know how I'm feeling, because their reactions would make me hyperventilate more. I tell you, I really did not believe that this would have ANY benefit. But I have been trying for a month or so--in all the situations where I generally get tired and dizzy, such as taking a hot shower, exercising, after a large meal, and when I pray (because we physically prostrate during prayer). I haven't fainted since! Not only that, I can exercise! After 5 minutes on the eliptical bike, I usually start to get visual changes. At that point, I do the breathing into my hands thing, and then the visual stuff clears up and I can exercise another five minutes, then I do it again and can go on another 5 minutes, and so forth. I can do 30 minutes that way! I can take a hot shower! I can pray longer prayers! And since I'm able to tolerate exercise, I've been getting stronger leg muscles and I'm really feeling a lot like my old self, my self before getting sick in 2002! I'm not saying that there's no such thing as POTS. I wonder if he would have found the same results in 2002 or 2003, when I was bedridden and constantly dizzy and couldn't walk without touching a wall. (Believe me, that was a sudden twist; I had been an athlete, and very, very active socially and at college before getting sick...and I had mono at that time, and noticed dramatic deconditioning in my legs, and couldn't focus or read a book...y'all know the drill, just POTS symptoms invading everything in my life.) But I think we DO need to consider what this doctor's research indicates....namely, that the heart rate issues do not in and of themselves cause the fainting. Rather, it's a blood flow issue, and the blood flow can be disrupted by carbon dioxide levels dropped (which closes or opens blood vessels), and therefore hyperventilation is the real mechanism rather than the tachycardia (even something not noticable, something that just happens all the time because we are all the time breathign a little too fast for our system to maintain enough Co2). This is not true for those who's blood pressure drops when they faint, however. Their blood pressure dropping can cause insufficient blood flow to the brain and that would cause a faint. Blood pressure stability, however, is the difference between POTS and NCS. So those of us with a POTS dx and not an NCS dx should try this, I think it's worth a try. Since I started doing the breathing into my hands, I realized that I do breath too fast in general. I mean like always, not when I'm anxious or excited or stressed....I just always breath a bit too fast. So I've been able to slow that down over the past month. Now I hardly ever need to do the breathing into my hands, except on the eliptical bike, but still not as often. I'm still gonna watch this and see where it goes. I've been through a lot of ups and downs, flare-ups and relapses I guess, over the past 7 years. But this is truly the first time I feel like I'm on solid ground...like I am "back to normal". It helped seeing an autonomic specialist who was able to convince me that there is NO perminent damage to my nerves, including autonomic nerves. He spent a long time talking to me, reassuring me by various evidence that in fact there is no perminent damage. He tested both sympathetic and parasympathetic nerve groups and was able to get normal responses, if a bit fast or a bit slow, still normal. I CAN function normally, my nerves ARE there after all, I just might need to change a few things or avoid overstressing my system. He emphasized that I am coming out of chronic illness and should not push myself hard...but should take a gradual approach, and not the "no pain, no gain" approach of my older, athletic days. So he was NOT saying "it's all in my head", rather just that at this point I could get better if I do three things: 1) stop breathing too fast; 2) recondition my leg muscles; and 3) stay hydrated. He told me not to drink water alone, but to increase electrolytes and fluids together. He said it's not clear why I got sick, but it's clear that I can get better now--without any medication. He said not to take any more Midodrine (which I had stopped because I was having bradycardia episodes and going unconscious for several hours at a time with HR into the 30's) and never, never to take any AEDs (epilepsy drugs). I'm still really thankful to my cardio POTS doctor. The vasopressor (Midodrine) he gave me three years ago helped enormously to enable me to live a semi-functional life. It helped me become more active, and gave me something to rebound off of, some energy and good blood flow to start getting some muscles back. But it didn't address the cause of my vascular laxity. I'm still wondering whether I have EDS, or something else underlying that initial failing of my viens to sustain a normal recovery course after the bedridden years. I dont' know. If I find an opportunity to test that, I will go for it. I do think that the hyperventilation has more of a role than most pro-POTS dx schoolers want to acknowledge. I think the doctors in UIHC are doing good research, and that Mayo and Vanderbilt researchers should integrate their knowledge with that insight.
  23. hmm, is it possible that it depends on your individual balance? like maybe it helps during menopause but not during child bearing years?? I think menses causes flare-ups because it's takes energy out of our bodies, and drains fluids. Personally, I recently realized that my menses disturbs my sleep cycle, which in turn exaserbates symptoms like tachy, palpitations, and fatigue. But if I limit activities, drink enough Gatorade, and find a way to sleep well during menses, it doesn't bother POTS symptoms much.
  24. that's wierd, I never heard of subluxing joints like ankles and hips. Subluxation-Dislocation syndrome usually occurs in the shoulder. Is the popping maybe tight ligaments? I get subluxation in my shoulders. I also have joint problems all over, but they manifest differently in different joints. In ankles, I have tarsal tunnel syndrome...in wrists, carpal tunnel syndrome... my elbow dislocated once (that is excruciating and absolutely NOT common, and I had to get it set by a doctor)... My knee caps dislocate (slide totally out of place to one side or another), which is followed by swelling. It's a very distressing moment, while the cap is out of place, and I cannot move, but need to slowly move so it pops back into place. I'm considering surgery for this, though my orthopedic sx said physiotherapy will probably solve it (it hasn't). Doctors keep suggesting it's muscle group imbalances, where for example the muscle group that pulls a joint one way is too stronged compared to the muscle group that pulls it the opposite way (resulting in tugging the joint out of place). But sounds like, from other ppl's responses, you have something quite different, and some POTSers here share your symptoms. Have you seen a specialist about this?
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