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scamelo

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Everything posted by scamelo

  1. This is interestng information about clotting time. a few years ago I had surgery and they did a clotting test. I think the normal times for clotting are 2 mintutes to 8 minutes ( going by memory so could be off). My moms clots in 2 mnutes and she had a stroke a few years ago from a clot. My test time was 8 minutes, so it clots very slow. I don't hemorrage or have to wear a bracelet but this is interesting information.
  2. I was just going by what the website has, the 650.00 is on as the initial fee. I did not know how much conventional he does. Good to know. Not sure why he does not take any insurance however.
  3. My neighbor told me about dr Podell. He is more of an alternative natural/holistic Dr. from what I heard. Has a website, and his first visit is about 650.00 or so from what I remember. He has a radio show and she heard him on that. I would have tried him, but thought 650.00 or so was a bit too much. http://www.drpodell.org/
  4. Hi Funny that you ask, I just started on Gabatril last week, andd I don't get seizures. It is supposed to work on GABA same way in brain as lorazepam but not be addictive. My problem is that I am taking 1/2 a 2mg ( lowest dose) pill at night and I am still much more tired and sleepy next day than without it. So far it has not done anything but the dose is very low. I am taking it because I get internal tremors or electrical feeling daily if not all day, and think it could be some kind of unknown anxiety. My BP since I started eating salt is normal most of the time and I don't faint, but did have drop in BP and Elevated HR ( 20bpm) during tilt table test. My internal shaking and electrical ( adrenaline??) feeling and tiredness are my worst symptoms. I do get dizzy occasionally as well off and on. I know many here have gotten tremors, but mine don't go away and I get them daily almost 24 hours a day and upon wakening etc. The lorazepam helped the tremors but I also take a small amount of that so I don't get addicted or too tired. I dont know if anxiety has anything to do with this, but we will see if I can eventually tolerate more of the gabatril and still be able to function. I am also on lopressor 12.5mg 3 times a day.
  5. There are plenty of men who get this also and I did not get mine until 7 years after my 3rd child and plenty of woman are young and have not had kids who have this, so I don't think it has to do with having kids either.
  6. I get internal tremors or what feels like electricial currents daily, most of the day. No dr. has figured out what its from. I have very mild pots and since I have been eating salt my BP has been fine and occasionally a little high once in a while. I am on lopressor 12.5mg 3 times a day. Ativan used to help with the internal tremors ( not visible on the outside), but I take very little ( 1/4 - 1/2 a .5mg table) for fear of getting addicted and it does not seem to help much. Have tried anxiety meds, but can only tolerate them for a week or two as I start shaking more. This is my worse symtpom.
  7. I wish I knew, came out of the blew from nowhere at age 43. Had high blood pressure for several years, then went to low for some unknown reason. Did not have a virus that I am aware of, does not run in family etc. Sil
  8. If 60-80% of the people were cured in a few months, we would not be hearing from any of them and most likely they would not know they even had POTS. Most likely they would think they had a virus and are now over it. I took almost 5 months to find what was wrong because I really pursued it and I have a very mild case, just those horrible internal jitters/current feeling that won't go away which is the worse. If I would have been getting better or cured say in 4 months, I would not have gone further to get diagnosed and would have thought it was a virus or something.
  9. Mesitonin is used to raise blood pressure. I have heard from another board that you can't lay down for long after taking it. I really raised your pressure and is meant for standing up use. I think it lasts for about 4 hours. I have read a lot about it on a board for people with NCS.
  10. Cedar Point was fun, especially for my 3 kids, But my symptoms started there, so my memory of it is not as positive as it should be.
  11. Hi, I have been going to a chiropractor for years, even before dysautonia. I always get relief, but everybody is different. I go about once every 3 weeks and it really helps me.
  12. HI I do not have the major swallowing problems that Dan has ( thankfully)) but in my case, that is how this whole thing started for me. I could not swallow solid foods without a mouthful of liquid for months. I lived on yogurt and ensure and pudding. I even went to the ER one night after taking an advil back in Sept because it felt like it was stuck in my throat, It wasn't but boy you sure could have fooled me. It was awful. It eventually went away, not even sure how or why, but glad it did. I can eat most anything now, and even though my mouth is dry at times, and here or there I need a little liquid, most of the time its normal and my appetite is back. I also lost lots of weight which little by little now that I can eat, I am sure I will gain right back. Wish I could tell you how mine went away, but I can't, but it did on its own. Now to work on the internal tremors. Sil
  13. Please make sure you have your glucose checked if you have not recently. Its probably a POTS symptom, but that is classic diabetes as well.
  14. No implants here, if anything I always wanted to be a bit smaller, no relation in my case
  15. Hi, I have checked into Hyperparathyroidism. If the calcium is above normal there is a problem, mine was within normal, just on high end of normal. I have had so many tests in last six months. If i had not had the tilt table in cleveland, the mystery would have still continued
  16. having recently had a slew of blood tests, I found out my blood calcium ( I take no supplements daily, but a tums here and there if I feel like I have heartburn and do eat yogurt daily) is on the high side. The upper norma calciuml limit on the blood test was 10.6, mine was 10.5, then after I stopped eating so much dairy, 9.8, which is still on the high side. Everytime I go to a Dr. they ask about calcium supplements, when I tell them my blood tests they so oh, guess you don't need them. Has anyone had their blood tested for calcium levels?
  17. All these SSRI's I tried, Zoloft, paxil and lexapro. I had more internal shakes and jitters frm them then on my own. ALl 3 had side effects. The lexapro was the least because I took the 10mg pill and cut it in half. It gave me diahrrea and made me very tired, but the internal shaking was extremely enhanced. While on Paxil ( lasted 2 weeks) I had to take ativan to control the internal shakes, they got so bad. I have friends who take these without POTS, and do fine. You never know until you try.
  18. Mine started out of the blue, while on vacation, after years of High Blood pressure. First symptom was swallowing problems and loss of appetite, escalated from there. Far as I know no family history and no viral onset.
  19. If your not far from Cleveland in Ohio, ( Not sure where in Michigan you are) you may want to check out the Cleveland Clinic?
  20. This is all very interesting. I am not aware of anyone in my family having POTS and I got my first symptoms ( in Ohio) without getting any viruses that I know of. However I do know that in the 5 years mom lived with us before her stroke, my mom did faint twice, for no apparent reason. Went to ER and they found nothing. that is not a lot in 5 years, and she has always had HIGH Blood Pressure, never low and no other symptoms that I know of, but who knows. We are both fair complected. I have blue eyes and very light skin. I have a friend at church who is an emergency Room Dr. She told me that when she was doing her residency she had a patient who had POTS. She researched it some and found that people of Jewish acentry had it more that others or it was more common. Not sure if this is true or not, many people don't know this is in their background ( like John Kerry for example). It was just a curious statement. Silvia
  21. I saw this on another site I frequent. Its slow if you don't have DSL, but interesting. http://www.mayoclinic.org/news2003-rst/1964.html silvia
  22. Who is Dr. Stillman? Is he/she at the Cleveland clinic. What kind of Dr. is he/she? silvia
  23. Hi I've lived in NJ since 1978, but started symptoms in August while on Vacation in Ohio. I find it ironic that there seems to be a big Ohio Connection. I was also diagnosed at CCF in Cleveland, because no one around here could figure out what was wrong with me. Silvia
  24. Hi Margaret I am new to this, my BP is low, but the beta blocker is an extremely low dose and helps with the high heart rate. On my tilt table my bp was not that low as some here, but my heart rate went up 20 beats per minutes just from standing. I believe that is why I take 12.5mg lopressor. In my case it also helps a little with the internal tremors that I get most of the day that no dr. can seem to fix. Silvia
  25. Hi Last year I had high BP instead of low, so I have an automatic one with a memory. Got it a walmart, for about $50.00. It is good. You do have to push on first, then start. It seems consistent and reliable. I know there are several brands out there. I hve an Omron brand one which was recommended and works well. It also takes both batteries and plugs in as well. It also takes your pulse, which is good! Silvia
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