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pat57

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Everything posted by pat57

  1. I was at my worst during perimenopause because of lower blood volume. I got much better when periods stopped.
  2. Fainting is clearly a case for disability. I think your Dr. may have to suspend your drivers license is you go that route though. good luck
  3. I had alot of problems- fainting , seizures and unable to stand- but got better after menopause. The Dr. did find a med that helped me also. I do not have POTS tho. I have OH and NCS. The med is Norpace. good luck
  4. I am on Norpace which effects the Muscarinic Acetylcholine Receptors, and that is why it works for me.
  5. this is what I meant........... "Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting."
  6. I sure have had what you describe, I think you POTSIE'S go up and down in BP. I have NCS and OH so I go down and down. My best freinds to ward that off are compression stockings , salt and water. There are aroebic compensitory movements that can help. I forget the proper term. Someone will know. Anyway learn them and use them. For example, running in place- it will bring the BP up. good luck
  7. hi ,I have NCS so it may play out different. My bp was always 0/p, 0 over palpable. To low for the machine.
  8. Hi I'm afraid you can't be sure if you pass iout or have a seizure. If you collaspe and no one is witness- you just don't know. Did you know about the activity the Dr. reported to you during your TTT? There are certain presentations of Elipectic seziure verses cerebral hypoxia. One increases in presentation then stops ,one trails off. The way you arch your back (every detail) matters. Dr. Grubb has descibed this in one of his books. I have had lots of seizures from lack of blood to the brain and I was dxed with Elipesy at first. Every time ,I think I do not go ,out but I do. BTW minor limb jerking during a TTT is seizing and not a seizure. Its the bodies way of trying to up the BP. Had you not been laid down it would have become a generalizeds tonic clonic seizure .Check that with a Dr. only my opinion. good luck
  9. Right under the "forum" link is a link "support groups". You can contact each group leader from there.
  10. the standing still causes blood pooling in the legs which causes the autonomic system to compensate. If the patient does not compensate properly, they can detect that.
  11. If you have only fainted during a TTT, you should not lose your license the TTT is a special circumstance. Discuss this first with your Dr. I lost my license for 4 years. And even though I fainted on every TTT The Dr. OKed me to drive because he felt I would not have fainted during the last one if I was seated. I had 4 TTT. the first three I dropped to 0/P. 0 over palpable. The last one due to the right med combo was 30/50 (or maybe it was 50/30)?. I would ask him first about how he views the issues. good luck.
  12. I am out only 15-20 secs. I fully recover in 2 to 10 minutes.
  13. I hear you. Its great that the hassle of the process is behind you though. My daughter is on SSI and that was a nightmare.
  14. Your Dr. needs to tell you how to handle the high or low heart rates. My guess is with the low stay supine, the high- no idea. He might time you its a reaction (compensation) related to passing out and OK. I pass out a lot but like 20 secs. You should get a medic alert too, if you don't have one. Compression stockings made it possible for me to work. good luck
  15. I was surprised too, Kaybers mom. I said to her, "Isn't that illegal", and she replied , "it can be a safety issue or they will make excuses". Pa has an "Employment at will law" below is a tidbit. I don't think all jobs are of this sort. But what I was looking at was. "Pennsylvania recognizes no action for wrongful discharge based upon breach of the duty of good faith and fair dealing in an at will employment contract." McDaniel v. American Red Cross, 58 F.Supp.2d 628, 633-634 (W.D.Pa.1999). You learn further that since your stated reason for firing Jones - because of his blue hair - may be described by some as a bad reason or no reason at all, Pennsylvania law supports your actions."
  16. the heart rate and BP drop in NCS. Just my 2 cents. Keep us posted........
  17. Thanks for the replies, I'll give those some consideration. The main issue is will they keep me if I collapse. The career link women thinks they won't. I have to lay down VERY BRIEFLY (30 seconds) about once every 3 months.
  18. tenille, If you were hooked up to an EEG at the time the nurse was so rude there would have been a "good" reason for the rudeness. During an EEG they want you to get angry. I have had one and the Dr. apologized (and explained), afterward. I have had about 5 seizing convulsive events. They look very much like seizures and are from lack of oxygen to the brain. good luck to you guys, mine is undercontrol with Norpace to keep my heart rate up. I have NCS and OH not POTS.
  19. So I work at McDonald's and am earning below poverty wages. There is a self sufficiency county career link agency nearby. I go in -provide all the papers , attend-I think -3 appointments total. Let me back up. I ended up at McDonald's because I need a job where I keep moving and I need specific hours because I'm a single parent of a disabled child. When she is out of school-in 3 years- I could work broader hours. But you will never guess what her advise was. "You better stay where you are because someone else would probably fire you as a safety hazard because you collapse at work." She was nice about it and apologetic, you might say. Ha Ha, I never saw that coming. Things are not as bad financially as it sounds. I down sized and have no mortgage. sigh...........
  20. I am very happy to see this also. How old is Kayber?
  21. It was a page from Syncope: Mechanisms and Management by Dr. Grubb. If you go to amazon you can look inside the book. I don't remember the page number. goo0d luck
  22. I have, but am told they are properly called convulsions. They take a certain form, and this is the confirmed clinical presentation of cerebral hypoxia. http://www.amazon.com/Syncope-Mechanisms-M...mp;qid=12313790 The presentation is throwing head back, arching back eyes roll back,and extended then retracted limbs (tonic clonic- I think). I have confirmed bradycardia before and confirmed tachycardia, after, with no confirmed HR or BP during. I believe I have been alert at times and unresponsive , I know I have been on the floor- still- eyes open. (seen by husband- plus as I remember it) It is impossible for me to know if I was alert because I cannot know whatever I don't remember and I cannot know if I've remembered everything. However during those type of episodes there has been no conflict of what I recall and what others report. I cannot remember which is which but with one (either autonomic or epileptic) frequency and force of seizing diminishes gradually, with the other the seizing is just over. During the "seizure" I think I am conscious albeit dimmed but onlookers report a whole lot more then I recall. My memory would be of 5 - 10 seconds where as others report it lasting 3 minutes . I know my head is moving and my arms and legs but I never feel any impact from the floor or whatever. It causes me much less fear then it causes the onlookers. Actually I don't have any fear, its a neutral reality. It might be important to note that my Bradycardia can be very brief. I would describe it as being unplugged. This was very true before my diagnosis, the meds I'm on give me minutes of warning. Which is plenty. If I lay down I abort an event. I do not throw up . I have no incontinence, don't know about the pupils of my eyes, have no fever, or hypersalivation. I recover in less then 30 minutes. No "postictal". I have neurocardiogenic syncope. Wishing you all the best.......
  23. I suggest, when your husband starts haranguing you, you make excuses to remove yourself. There can be........... "I've got something in my eye. I forgot to buy milk. I promised the neighbor I would get her mail today." You get the idea. He is tearing you down. Coping is facilitated by good boundaries. good luck
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