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About SaraC628

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    Advanced Member
  • Birthday 06/28/1981

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    Appleton, Wisconsin

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  1. Orthohypo, I am in Wisconsin. I see a specialist at Froedtert in Milwaukee.
  2. The weird thing with the Florinef is that I have been on it for months with a minimal increase in BP, but suddenly it went much higher than I have ever seen it and they were all completely resting. I skipped all doses on Thursday and then went back down to .2, but my BP is still sitting higher than I normally see it, even after standing and that is when mine gets low. I also realized that I did not even do my excess salt the day before the big spikes. I have tried Midodrine and I hated it, it made me so tired that I had to prop myself up and fight to stay awake. I am really wondering how t
  3. Hey OrthoHypo, I finally heard back from my doctor and they were not all that concerned with my BP but they did say to skip my meds today and then go back down to .2mg tomorrow. They also told me to call my PCP and ask her to order a potassium test to see where the levels are just to be safe. Apparently, .3mg is a little high for me, however .2 wasn't doing the trick. My BP finally calmed down around 12 or 1 this afternoon after being propped up in bed all day. Luckily, my autonomic specialist is great so far, but he is two hour away. My local neurologist apparently just likes to be diffic
  4. I know exactly what you are talking about. I got on a guacamole kick several years ago, like 9 or so, and then after eating some one night I got really nauseated. I could not say the word or think of it without almost puking for at least a couple of years. And even now I get a little queasy talking about it. And last night I was feeling really sick and I remembered what I had for dinner and I swear I could taste it and I went running for the bathroom!
  5. This was the first time my BP has gone this high. The venafaxline can increase BP as well. That was started just over two weeks ago and my Florinef was increased the same day. I have had the headaches on the prior dose of Florinef. I have a call into the doctor because I was technically supposed to increase it again to .4mg.
  6. Hello, I need some help ASAP! I have been taking Florinef for a few months. I increased to .3mg per day just over two weeks ago. I was also prescribed Venafaxaline(sp?) around the same time. This morning I woke up around 4am with a huge headache so I checked my BP to make sure it wasn't too high. Sure enough it was 131/103 with a HR of 127. This was after being propped up in bed. I tried sitting up for a while and continued to check it. These are the readings: 130/99 HR 114 139/98 HR 82 151/99 HR 83 128/97 HR 90 144/87 HR 84 141/100 HR 119 All readings were completely resting. I am not
  7. According to what I have read, he was diagnosed with Orthostatic Intolerance. This is my diagnosis as well. With mine the only autonomic testing that was off was the actual tilt table. According to my autonomic specialist, OI will simply go away or ease up over time for most people as long as there is not an underlying condition. Maybe his symptoms simply eased up on their own? He wrote an autobiography called Now and Then. Maybe he talks about his recovery in that.
  8. So the crazy thing is that I asked my autonomic specialist about this particular symptom and he had no explanation. Interesting....
  9. Kelly, I think is part of the issue with our son. His OT has discussed sensory issues with us. Aaron is the opposite of Ronny though, Aaron seems to have a lack of sensation. We have continued to tell his doctors that he has a super high pain tolerance. In fact Aaron never cries. His OT discussed that he possibly did not know where he was/is in space. I don't think that this part of our son's issues made sense to my husband and I until your post. Aaron does not like commotion and he gets easily overwhemed. I realized that the times I have gotten him to repeat something, which is really
  10. I have terrible long term memory. I don't remember names of most of my teachers. I too have memories told to me and I have no idea. I have always told my husband that I don't remember most of my childhood. I remember bits and pieces, but not a lot. I also have really good short term memory, well it is worse since this illness, but still pretty good.
  11. So this is probably really far fetched, but we have been looking for answers for a while. My 20 month old son started to show severe deveopmental delays at 4 months. He ended up being diagnosed with low muscle tone and hyperflexibility in the joints. He has a slightly sunken chest and some barely there facial characteristics that are different. He is not walking, he will take 4-5 steps on occassion. He his mentally about 8-10 months. He does not talk, he babbles. The genetics doctor was certain that there is an abnormaility, but has not been able to find it. Most recently they complete
  12. My barely 12 year old diagnosed me!! We were watching the Mystery Diagnosis episode on Orthostatic Intolerance the day before my autonomic testing. He had no idea what my testing was for and I barely did either. I was half paying attention to the episode and he was kind if reading a book too. All the sudden he looks up and goes that's you mom. I told him it didn't really seem like my stuff and then they explained the tilt table test and I almost fell off my chair. Sure enough my testing was positive for OI. I had seen more than a dozen doctor at that point!!
  13. Ash, all of your symptoms are really similar to mine. I do get periods of being super hungry. They don't stick around very long, maybe a week at a time. But during those times, I can eat a full meal and still want more. I know that I am not really doing anything different to bring on the change. Sometimes I wonder if I finally got more hydrated than usual, but I don't really think that is the case. I have figured out that I don't feel any better when not eating gluten or cutting out sugar as far as my digestive symptoms go. I wish I could figure it out though. I find it really interesti
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