lotsicker Posted April 1, 2009 Report Share Posted April 1, 2009 I just wanted to add my 2 cents I am a VERY athletic person. I have GREAT muscle ton, (i.e. I have 22 mo. old twins but, still have a six pack without surgery!) I work out (OR DID ) all the time. I even still push myself to work out but, I can tell you this makes me WORSE not BETTER. Your Doctor sounds like he is full of doodoo. I do agree that walking and increasing circulation does help and should be a daily goal. I do not agree that increasing your muscle tone is a cure! If you are feeling better, sure get to the gym. If you are feeling like crap...just walk. The goal is to increase blood volume and circulation...I guess in his mind more muscle means more blood volume...???DO not give up hope, try playing an exciting game on XBOX or even reading a suspencful book, they both increase blood flow with out having to exercise (and possibly build the BRAIN muscle...if that counts:) Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 1, 2009 Report Share Posted April 1, 2009 My thoughts are that you need to see an opthamologist. I would go to a university practice. I too had these symptoms and went to the eye clinic at Pit. I had a retinal issue, this took some time to resolve and then got dry eyes and have to use eye drops many times a day. There is some discussions regarding high pressure in our retina and other issues. I am so glad I went. Have had a couple new presciptions for eye glasses in the last 3 years, but I can see !! MBTW....When I worked at a health club a while ago, and was in the best shape ever, I had problems with my eyes. Went to the opthamologist. He had me step up and down in the stairwell right outside the clinic door. When he checked me my eyes were very dry due to exercise. I had forgotten about this until now. Quote Link to comment Share on other sites More sharing options...
Machair Posted April 2, 2009 Report Share Posted April 2, 2009 I have all the symptoms you mention in your episode list and the triggers you talk about are mine too. I have pots as a symptom of ME/CFS which I got in 1996 after contracting an enterovirus related to Polio.I can't tolerate heat, it sends my heart crazy, and as you say the bathroom trips are a major problem. Periods are a trigger as well and sugar is too, but the worst one is alcohol - a glass of wine would have me up all night with these attacks. You are not alone. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 2, 2009 Report Share Posted April 2, 2009 How do I find out what Kind of POTS I have?Hi Michele, I went to the "physicians list" area on the DINET homepage and these are the recommended docs in New York:New York Julian M. StewartDept. of Pediatrics Munger Pavilion New York Medical College Valhalla, NY 10595 914-594-4370Treats Children Information on Dr. Stewart's current research study is available on our website at: http://www.dinet.org/studies.htm Svetlana Blitshteyn, MD6507 Transit Road Unit CEast Amherst, NY 14051716-531-4598Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.Mount Sinai School of MedicineAutonomic Disorders Research and Treatment ProgramDepartment of Neurology, Box 1052Mount Sinai Medical CenterOne Gustave L. Levy PlaceNew York, NY 10029212-241-7315 Autonomic LaboratoryTreats adults Dr. Kiril KiprovskiDepartment of NeurosciencesHospital for Joint Diseases301 E. 17th StreetNew York, NY 10003212-598-2375POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic HypotensionAutonomic LaboratoryTreats adults Dr. Ludmilla Bronfin650 First Avenue., 7th FloorNew York, New York 10016212-532-6298POTS & NCSTreats adults Dr. Max HilzNew York UniversityDepartment of Neurology550 First Ave.New York, NY 10016212-686-7500 ext. 7755POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic NeuropathyAutonomic LaboratoryWill treat children Lindsey Lee Lair, MD35 East 35 St. Suite 202New York, NY 10016917-991-1992Comments:Dr. Lindsey Lee Lair completed her fellowship in autonomic and peripheral nervous system disorders.The Syncope Center at Columbia Presbyterian Medical CenterHarkness Pavilion, Room 342180 Fort Washington AvenueNew York, NY 10032212-305-9940Treats adults Louis H. WeimerNeurological Institute of New York710 W. 168th StreetNew York, NY 10032212-305-1330Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System AtrophyAutonomic LaboratoryTreats adultsDr. Weimer primarily performs testing. The Neurological Institute of New York has a large movement disorders group experienced with MSA, and there is also a syncope center that treats NCS (See: The Syncope Center at Columbia Presbyterian Medical Center). POTS/OI patients are considered on a case to case basis.You are very lucky to have all these docs to choose from! There is no one in my state or within 500 miles of me on the list. I went to Mayo, Rochester and it was worth it. I found out I have small fiber neuropathy, probably triggered when I had mono in '06, which caused my POTS. I saw over 9 specialists after my POTS worsened til I found a neurologist who was willing to send me to Mayo. Sometimes you have to see multiple docs until you find one who looks at you and says "Oh I've seen this before!" Then, they should be able to figure out what triggered your POTS and come up with a treatment plan (maybe not a cure, but will improve your quality of life). Keep trying! Quote Link to comment Share on other sites More sharing options...
Guest GaryRN Posted April 2, 2009 Report Share Posted April 2, 2009 The symptoms that you all list are very in line with what I get and the people on Lymenet.What is interesting is that only some of these symptoms are referred to in the literature that go hand in hand with POTS. I wonder why these other symptoms, which so many seem to have in common are not listed in the General sense when you read up on POTS.I would bet, most of you have Lyme and the POTS is secondary. Kill the Lyme and the POTS should clear up. The spirochetes are shaped like a spiral spaghetti noodle, they are so small and imagine millions of these inside you. The way they move is like a corkscrew or a drill bit, so they can go anywhere in the body that they want.In my case, I started with anxiety, then came the shortness of breath, than the tachycardia, then all of it together.I have pots even sitting in a chair and it gets worse standing up. Other times, I can stand up and there is no POTS. How do you explain this ? Does anyone else have it like this ?Gary Quote Link to comment Share on other sites More sharing options...
Machair Posted April 3, 2009 Report Share Posted April 3, 2009 The symptoms that you all list are very in line with what I get and the people on Lymenet.What is interesting is that only some of these symptoms are referred to in the literature that go hand in hand with POTS. I wonder why these other symptoms, which so many seem to have in common are not listed in the General sense when you read up on POTS.I would bet, most of you have Lyme and the POTS is secondary. Kill the Lyme and the POTS should clear up. The spirochetes are shaped like a spiral spaghetti noodle, they are so small and imagine millions of these inside you. The way they move is like a corkscrew or a drill bit, so they can go anywhere in the body that they want.In my case, I started with anxiety, then came the shortness of breath, than the tachycardia, then all of it together.I have pots even sitting in a chair and it gets worse standing up. Other times, I can stand up and there is no POTS. How do you explain this ? Does anyone else have it like this ?GaryHi GaryWell I agree with you totally about the variability of the symptoms from one day to another. Sometimes I am ok for days and then for no apparent reason the problems start again. I have also noticed them in bed at night as well as when I stand up, especially last thing, and I can't queue for anything as standng on one spot is impossible. I was tested for Lyme but it was negative so the enterovirus seems to be the cause with me. I am always ill in certain situations though and long haul air travel is one of them, especially if the destination is hot and humid. My son now lives in Arizona which is a 12 hour flight from the UK, has anyone any advice how to cope with this?- as I would dearly like to see him soon. Have you been treated with antibiotics for the Lyme and did it help?- as I understand you have to treat it early to be 100% successful. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2009 Report Share Posted April 4, 2009 Im confused who is replying to who??There are different views on the different forms of POTS - but the basic rule is that some are caused by excessive vasodilation and some are caused by excessive vasoconstriction. If you want a more detailed answer I can pm you some interesting links on recent advances on this area.Long flights are my WORST enemy. Interestingly they also exhaust the nitric oxide in your body. I like the heat better than the cold in terms of POTS. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2009 Report Share Posted April 4, 2009 can you get Lyme in Australia?? Quote Link to comment Share on other sites More sharing options...
Guest GaryRN Posted April 4, 2009 Report Share Posted April 4, 2009 can you get Lyme in Australia??ABSOLUTELY 100%, Lyme is pandemic, meaning it's all around the world now.Gary Quote Link to comment Share on other sites More sharing options...
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