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About clare

  • Birthday 07/07/1977

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    Family, Art/photography, Science, Outdoors, Deaf and Hard of Hearing Education/Early intervention, fun, games discussion, learning...

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  1. Thanks so much for posting this. I shared it on my Facebook page so my friends and family can see it and understand that these concerns are things that I too struggle with daily! That whole preoccupation or internal questioning with things like, "where is the closest seat?" and "is that line to long to stand on?" And that's on a good day
  2. I have been thinking about both of those hospitals. I'm nervous that I'm going to make the trip to Vanderbilt and, like you, they won't be able to tell me more than I have POTS! Plus-I seem to have an autoimmune thing going on and it seems that people do the Mayo Clinic for that type of thing!?!? I live a lot closer to Johns Hopkins but until recently, I did not know they had much of anything for dysautonomia there. Do they do any studies? Can they do blood volume testing?
  3. Wow guys...I'm not alone! Thanks! I forgot to mention that the other thing they say with ear pressure, ringing, pain has to do with migraine. I do not have typical migraines very often but I do have various symptoms like this and visual disturbances(after imagaes...)
  4. Sometimes I get weird ear issues (ie...sometimes one ear will suddenly "cut out" while other might ring momentarily, sometimes I get full ears or pain and there are times that I get some tinnitus-though I understand that can be a brain thing) I have had the ENT/audiology workups and have been told that my ears look fine. The most recent ENT stated that it is all related to my POTS and that sometimes those ear symptoms can be a warning sign that my blood pressure is dropping. Does anyone experience this as a "warning" sign or even just a symptom? This afternoon, I was sitting on the computer and I had one those sudden ear "cut outs." I had just taken my pressure about 15 minutes before(93/67 pulse 83) so when it happened I reached over and took it again (105/75 pulse 94) I don't know if while sitting still, I dipped too low and then got a sudden adrenaline surge to increase but that isn't much of a change. Dunno?
  5. This sounds very familiar. I have had Palinopsia/after image problems for years now. I too get pattern problems, certain floors and wall paper can make me feel dizzy if not altogether sick. Plus it is very hard to be in a room with a fan that is below a light(flickering) I have seen one of the best Neuropthamologists @ Penn. and my eyes check out. He basically told me that he sometimes sees this kind of thing with people who have POTS/CFS...I have been told that I have a-typical migraines and I have had numerous eegs to rule out epilepsy. My visual symptoms do get worse right before my period. I must have my family trained well because they will always warn me if they are going to do something that will cause flashes. Please update if you find anything interesting at the Neuropthamologist's office. Good luck!!
  6. I can't vote yet! I'm going to Vanderbilt for research but I'm really curious about Johns Hopkins because I live only an 1hour from them! I'll be looking forward to results.
  7. Thanks Chris, that is interesting! I couldn't believe it when my one Doc. said I could just stop. I have been secretly hoping that time would have done it's trick and I would be ok without the med Corina, thanks for the welcome and suggestions. I will definitely wear my super hero POTS gear! I really do have to look into the airline, I have not flown in years and I certainly not when I have felt this unstable.
  8. Hi there! I am new to this site though, I should thank you all because I have lurked around and found some great info this past year. I have had dysautonomia problems for many years now but was finally diagnosed with POTS in 2009. This last flare that I had in Jan. was the worst! I had never before needed to use a wheel chair but I was lucky that with time, Fludrocortisone, and PRN use of Midodrine and Betablockers, I am doing a bit better. My problem is that I am due to fly(alone) 2 hours to Vandy for research at the beginning of June. I have never had complete dysautomia testing completed before(only TTT) and I really think this will be worthwhile even though my POTS cardiologist kinda blows it off like we should just do trial and error meds. I have had so many questions for years and I want an opportunity to be in a place where doctors actually know POTS/OI...But I guess this is a different discussion... My concern is that I need to come off the Fludrocortisone and even though they said I could just stop it 3 days prior, I know(just from lowering that med) I will react. Also, I have read that you should always wean off fludro. slowly. So I started taking 1/2 my dosage and now after about 5 days I am seeing really low pressures and high heart rates. I am going to try supplementing more with midodrine but I guess I am wondering how other people have dealt with this problem! I know everyone is different but I just want to know that I'm not alone in this predicament. Any advice?
  9. I have had these types of problems for years. I have had those intense spinning ones that have woken me up but(knock on wood...) they go away fast. I started to think that maybe it had to do with my blood pressure crashing while I was sleeping and my body spewing adrenaline or something to correct it. However, sometimes, I get other types that last for longer periods of time and sometimes I am off balance for days or more. I have been told two things that make some sense, atypical migraine and Benign Positional Vertigo. I do not get headaches often, however, I have been assured by some very good neurologists that vestibular migraine and it's symptoms do not have to include head pain and the symptoms can come and go and don't always need to progress into the path of a typical migraine. I have had some MRI's that have shown signs(punctate foci) that I have migraines and I have had abnormal EEGs that show that I am either prone to migraines or epilepsy(the doctors seem to rule out epilepsy) but I'm finally going to see a neurologist who specializes in dysautonomia and I am very excited to see if these are things he has seen in his past POTS patients(say that one ten times fast ;-) I also tend to get BPV once in a while and that will be a different dizzy/of balance feeling, It is more continuous and can last for days weeks months...This of course is all on top of, or including, normal POTS dizziness/faintness! Needless to say, dizziness was one of the first things that brought me to the doctors, all those years ago. I'm glad you brought this topic up and I will be watching to see if anyone else has more insights into this stuff!
  10. I definitely get these adrenaline rushes during flairs as well. When last checked, my morning cortisol level was a bit high(but that was only one morning blood draw) I just figure that I had a lot of extra stress hormone floating around and little reactions would become dramatic at these times. I don't know and I was hoping to find some answers to lots of questions when I go to soon go to Vandy as well! I would love to know if we are going to be there at the same time. Message me if you would like.
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