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Everything posted by masumeh

  1. I looked up NO (nitric oxide) after reading your reply to the antioxidant post...some pages online mentioned that low NO results in vasocontriction. Could that be your issue? Maybe in that case, exercise would help (bc it boosts NO levels)? Personally, I have lax veins and I think it's EDS related.
  2. WOw, sorry you had such a horrible night. Looks like an AC would help?? Some of the hardest moments for me have been when I am having a flare-up and my family is also sick and in need of care. Of course, being the mommy, I have to put my own health issues aside and do whatever my child needs. Ironically, those memories are very valuable to me...because it's like, "If I can do that, this disease just can't stop me." Good luck with your son, toe, flare-up, and cooling down your house! Oh, and yes, it's true that they just cannot understand no matter how sympathetic and caring they may be...it's just one of those "never been there" kinds of things for most people. But it's nice when they try to empathize.
  3. OK, tried to edit last post but something erased it. Tingly, cold hands are a sign of hyperventilation. Have you considered panic attacks? If you have hyperadregenic POTS, this is a high possibility I think. In any case, I hope you are able to determine the antecedents and work on avoiding them. Good luck figuring it all out...I know it's really an ongoing process.
  4. What are your triggers? If it happens once every 2-3 months, is it like when you push yourself, or when you eat too much sugar, or what? Sugar and sleep cycle upset cause seizures. But then, they can be POTS antagonists as well. Maybe your crying is a shock reaction? My POTS doc used to tell me that my convulsions were shock reactions (to the high tachy). Adrenaline related.
  5. my spells also last about an hour, and can recurr back-to-back while I'm down. but recently, I was informed that I actually have epilepsy as well as POTS, so now I call them seizures. still now sure though. The classic thing for me is: my calves feel heavy, can't use my fingers, head pain (in front, above the eyes), tightness in my chest (feeling like I can't breath or more specifically cannot control my breathing and breath very shallow), black-out, fall down, convulse (especially left arm), cannot move, feel, speak, and my jaw clenches, if somebody opens my eyelids they will see my eyes rolling back, I CAN hear the whole time, but cannot properly think and probably wouldn't feel it if I were in pain or even stabbed or shot... I might come out, go back in, come back out, back and forth until I fall asleep... Funny thing is that my POTS might be causing my epilepsy through blood flow deficit to the brain and because tachy and blood flow deficit stimulate some kind of vagal nerve reaction that provokes a seizure. Some people with seizures cry or have fight or flight symptoms, which they cannot necessarily recall afterwards. Parts of the brain can be triggered, while others are left normal...creating individual idiosynchracies in seizure presentations. Partial seizures can be especially tricky. Have you had an EEG? In particular, have you had an EEG with a day or few days of a full-blown fainting spell? My first EEG was negative, but seven years later a second EEG proved classic, generalized epilepsy. Since then, I learned it's easy to have a false negative. Anyway, POTS is such a difficult to understand disease. I think the best course is always to get to know YOUR pots, YOUR symptoms, YOUR triggers and manifestations. Then you become the expert and can help your doctors choose the right treatment path.
  6. I was on Midodrine for about two and a half years. I started on a high dose, had reactions like bradycardia and seizures, then cut the dose in half whenever the side-effects got unbearable. In November, I was on only 2.5 mg per day (one dose midday)...and that's down from 40 mg/day two years before. I was having many, many seizures every day, and the doctor thought I should up the dose to ward off the flare-up, but I thought the medication was causing the seizures so I discontinued completely. Seizures stopped the same day. However, I was since diagnosed with epilepsy, so it's possible that my chemistry is really different from other POTS patients...and it seems that Midodrine helped my pots (blood got to me head, and I didn't have as much cognitive difficulty) but lowered my seizure threshhold. So it's out for now. But it was really a very dynamic drug...my reaction did not stay stable for long and I had to keep adjusting and taking "medication vacations" to counteract problems as they popped up.
  7. I think there is something natural about that. At the very least, it seems common. Did you ever see "As Good as it Gets"? It's a movie, kinda old now, about an OCD patient, a gay artist, and a single mom, all living in New York and forming an unlikely threesome of friends. Each character is coping with major disruption in their life. The single mom has a line about her loneliness, and how she found herself "giving this cute couple in the park dirty looks". I guess that's along the lines of what you're talking about. When I was a kid, our GS troop prepared to visit a terminal children's clinic. They cancelled on us, stating that it depressed the children to see healthy kids.
  8. I have this issue, but it has lessened a lot over the years. If I visit my mothers house though....hmmm....really big face stuffing session....I actually pass out afterwards. My stomach gets so big and bloated, I look pregnant. So it's a matter of small meals, slow chewing to look like I'm eating like everybody else at the table, and frequent snack/meals. I know this is partly blood pooling because of the bloating. It's kinda obvious. BUT...I am also considering the role of sugar byproducts in the brain after learning that --in my particular case-- epilepsy is also involved in my episodes and fainting spells. Epileptic seizures are usually preceded by tachycardia, so it's hard for me to separate the two diseases and determine triggers for each. But epileptics benefit from fatty breakdown (ketones) rather than sugar/carb/protein breakdown due to chemical changing in the brain after the meal. Not eating always cleared me head...reduced brainfog...although prolonged, it leads to total flare-up and fatigue. So anyway, interesting chemical component at play in addition to mechanism of blood pooling.
  9. my pots doc asked me the same question in our first treatment planning meeting...he was surprised that I did not say "fainting", since I fainted at least weekly if not daily or multiple times daily. Nope, it's always been the fatigue that fetters me and disrupts my activism in life. He said that would be a difficult one to work on, and he was right...but it did get a lot better.
  10. Sorry for your loss. A pet can be a very close friend, offering unconditional love and freely given companionship, trust, time. I think pet deaths have grieving processes, similar to the process of losing a person but usually less intense. Since your emotions are highly affected by this event, and your body in turn, I suggest you try to break your grief steps down into small pieces to avoid being overwhelmed. Try to break your feelings down so you can manage or resolve each part slowly, one by one, day by day. Maybe that way, you can avoid being emotionally overwhelmed and physically devestated (pots flare-up). Doing little things to process the loss can help a lot. If you cannot go to the burial, how about writing a letter to be put in the grave with Tami? If you cannot go to the hospital, how about sending a prayer to be by Tami's side while you cannot? I think it's maybe that "chance to say goodbye" thing?? How about keeping a special object of Tamis (or pic), and saying goodbye to it in your own way? Also, remember to breath with your stomach (not chest), monitor your skeletal muscles for tenseness and try to relax them when they are contracting from stress, and remind yourself that nobody can control things like this; moments that are painful in our lives just need to happen and pass by us. The more we try to control it, the more frustrated we feel and the more we are actually just hanging onto negative energy...that's how I think of it anyway. Good luck with your grieving process, and I hope that your flare-up stops in its tracks and you have a quick recovery.
  11. I have never been to Turkey, but I've been to Iran and currently reside in Saudi Arabia...so I'm just next door. You should be able to find some familiar over-the-counter and prescription drugs there, but by different brand names. Ibuprofin is Junefen here in the Middle East, and Tylenol is Penodol or Fevadol (not sure about Turkey specifically). As a general rule for navigating medical care in the Middle East--Find a CONSULTANT from Britain, US, or Canada. Ask for a consultant by appointment, and avoid the ER. ER is training ground for residents who don't know what they're doing and experienced doctors who aren't good at what they do and cannot find a better position. Make an appointment, and ask over the phone about the doctor's nationality and where he/she obtained their medical degree from...if it's Egypt or Syria, BAIL. I'm not saying this to be racist...but this is just the reality of medical traning standards internationally. In Sudan, for example, doctors can be little Dugie Housers, because it's a four-year degree (like a BA in the US). They just don't get as much training. Good luck! Hope you find some excellent medical care soon. You also might consider an emergency flight home, especially if your medical insurance will cover it. Oh, also you can probably get the local clinical nurses to visit you at home/hotel to administer IV fluids (saves you energy and a money). That is fairly common in the middle-east. Just explain to them that you are unable to move due to the severity of your illness.
  12. I had muscle tremors, especially in the legs, stomach pain, and some other minor side-effects...but I stopped because of the increased urination. It was horrible...I was dehydrated within a day of starting, and that provoked a major flare-up. However, I will say it was wonderful to be able to use my leg muscels without feeling weak and unstable. I felt immediate benefits in my leg muscles...great, like "Oh my gosh, I have leg muscles again" kind of reaction. good luck with your trial.
  13. I think it's the Flax Seed that's doing it... I took Flax Seed oil capsules daily, and ate ground flax seed on cereal and ice-cream, for only about 3 weeks and EVERYONE who saw me said I became fat (well, mostly they put it nicer than that, "You gained weight," "You filled out," "You don't look like a skeleton anymore, good job"). But I don't want to lose control over my weight either...so now that I look normal weight, I stopped the Flax Seed, and the pounds have not gone up since dropping Flax Seed from my diet.
  14. I tried ginger lozenges for nausea...bc real, fresh ginger root helped me so much. Not the same at all...in fact, I felt no benefit whatsoever.
  15. Congrats! Briefly, my advice is to let your OB/GYN consult with your POTS doctor. They should communicate directly with each other. My OB consulted with several other specialists during my pregnancy, including a perinatologist, endo, pulmonologist and hemotologist. She was very cooperative. The most important thing about her was her great memory...she remembered every detail of my complex history.
  16. My parents are nuts about Flax Seed. They have it ground, and put it in their cereal and oatmeal. I bought the GNC Flax Seed Oil capsules, and tried it for a few weeks or so...but IT MADE ME FAT!!! Really....I never was so pudgy in my life, even when pregnant! I'm still trying to shape back to my normal body.
  17. Your license was pulled? I wrote "syncope" on my last license renewal form, and nobody even asked me about it...they renewed my license, no problem. Probably if I wrote "Fainting" they would have acted differently...not many people know what the word "syncope" means I guess. But I don't drive. I used to, on good days. But then my doctor's nurse told me that one of the patients with POTS got into a car accident bc she had an episode at the wheel. I just thought about my daughter, and my own life, and the possibility of killing some random stranger in another car...and that was it. No more driving. I know that the general DMV rule in VA is that a person who has consciousness problems is not allowed to drive until they are free of such issues for a full year. I don't think anybody actually enforces that, however. It's up to individuals to act responsibly.
  18. I used to like thinking about those days with the phrase, "Tip me over and pour me out." I just get tipsy when I'm POTSy. I also feel less control over my muscles in that kind of mood, or when that symptom comes on during flare-ups. Other than that, I did lose some propriceptive skills alongside overall leg muscle degeneration. Lately, I've been doing physiotherapy with propriception to regain some balance. It helps! Most of these kinds of exercises revolve around putting you a little bit off balance, like by standing on a tilty or wabbly surface, and letting you get more into balance. Proprioceptive muscles in the legs are worked out that way. They aren't really worked out in regular exercises such as biking or jogging.
  19. I get that kind of boost from Odwalla brand chocolate nutricion bars...but not the protien ones in particular, I think it's the antioxidant ones. I feel that real cocoa is good for me somehow...maybe the blood thinning? Pomegranate can do the same blood thinning action, and that makes me feel good (like less palpitations, easier cognition), but not more energetic.
  20. I got better! Born healthy...raised strong. In college, started fainting. My case started out very severe first year...bedridden, weak, my mother thought I would die. Now, seven years later, I am semi-functional and really most people who meet me cannot believe that I used to be bedridden or that I have a wheelchair in the closet. Yesterday, I walked more than a mile to stores with my daughter in the evening (women can't drive here in Saudia, and my husband was at work, and we needed to get her a dress and dress shoes). Then at night, we attended an obnoctiously loud wedding till almost 1AM. Today, I have a migraine, but I didn't faint yesterday or today. On the other hand, I know if I start studying again, I'm going to start fainting again. And my graduate classes (program try number 2) start in the fall. I'm not afraid of the fainting though. I'm going to live my life despite this monkey on my back. It's a long, long story in full. Anybody who is interested in the longwinded version can PM me.
  21. I don't know about the details you wrote, allergies etc., but I do get esophageal spasms. Feels like cardiac pain, but goes away swiftly with medication (not allergy meds, specifically anti-spasm for esophagus...if you want, I'll search for the box and post the name). Actually, I never associated it with swallowing...it would just come and go all day and night (for two months b4 I got the right dx and rx).
  22. Did you consider psychosis? Since you get a detached feeling, don't know where you are or who you are, and cannot "complete the thought/memory"... Also, medications can induce psychosis...especially steroids. I became psychotic on Florinef when I tried it. I felt detached, and although my rationality said "no", I truly FELT as it everything around me was floating upward. So wierd. Next day, I was so tired, had a horrible headache, but I was no longer derranged. Friend of mine woke up middle of the night when her husband was medicated with steroids, and he was screaming and trying to kill her. He is totally benign off of meds. He didn't remember it later, or know who he was at the time. Steroids can do really wierd things to our brains!
  23. whoa, I just have to say, that is really horribe about feeling the C-Section! similar thing happened to one of my sisters-in-law because the epi needle slipped out while transporting her for emergency C-Section, and she saw and felt everything...really, really bad. But she's such a strong person...she even had another baby after that! If you need to pay out-of-pocket for a TTT, it's worth it. Health problems cost a lot more in the long run, if you cannot treat them early. I do not have insurance...and my TTT cost about $350...but honestly, it was soooo worth every penny. Without the TTT, I would have doubted the diagnosis when other things came up later on. But the TTT clearly showed 75% blood flow deficit to my brain after 20 minutes of upright posture. That is indisputable.
  24. i say push for confirmation tests. I was also misdiagnosed by doctors who were so sure of the Dx, they "Didn't even need to test!" Later tests proved their DX wrong. Since then, I've caught several doctors in the midst of unfounded, incorrect diagnosis, including one who tried to misdiagnose my daughter in the ER while she was in a comma. They rattle their jargon off, then I say, "Is that what the blood tests indicate?" Then they give some excuse, then I say, "But you're going to conduct blood tests to confirm that, of course, aren't you?" Problem comes when there is no sure fire test to confirm the DX. Oh, my sister-in-law missed some menses, and an endo actually misdiagnosed her with anterior pituitary tumor--without an MRI! She was ready to dish out the medication and everything. My sister-in-law had the sense to seek a second opinion, and that doctor suspected VD deficiency, conducted an MRI to confirm no tumor, and blood test to confirm VD def. (hers was 8, normal is 35-60). We were all so mad at the first endo. She didn't even explain that AP tumor is not going to kill her. She just said "brain tumor" and make my sister freak herself sick. Some doctors are really nuts!
  25. Hi all, Just checking if anyone in the forum has experience seeing Dr. Talman, of University of Iowa hospital? I need a neuro to consult on my POTS since being diagnosed with epilepsy (current POTS doc is a cardiologist), and I'm in the process of making an appointment to consult the UIA team over the summer. Dr. Talman is their autonomic specialist. Another one will meet with me about the epilepsy. But they'll coordinate. He sounds like a good doctor. But it's always good to hear first-hand patient accounts. Thanks!
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