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Everything posted by SaraC628

  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 the body responds if my OI suddenly goes away while on all this medication?!
  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 difficult! I was diagnosed with migraines recently so that may have caused the headache on its own. (Personally, I think the headaches are so bad because of the Florinef, but since on the Florinef I don't feel like I am going to faint all the time.)
  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 anxious or anything. I have Orthostatic Intolerance so I typically have lower BP and the only time I have ever had my HR reach 130 was after doing some household chores. I have not even taken any of my medications this morning. I have a call in to my doctor, but I am wondering if anyone has had a sudden onset of high BP and HR when resting. Oh and my hands got tingly for a few minutes. The nurse told me to call 911 if I start to experience any shortness of breath or chest pain. I should add that I am only 31 and not at high risk or heart disease. I have had an echocardiogram in the last year that was completely normal.
  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 rare, it has been just him and I in a quiet room. Did your son seem to learn a new skill and then forget it? Aaron for instance learned how to clap and did it for about a month consistently and then he just stopped and even now at 20 months very rarely will clap. The same thing happened with waving and several other tasks. I have said several times that I feel like he is trappd in his mind. Aaron does not display the classc signs of Autism. I did read up on sensory integration disorder and it appears that it can be part of something bigger. Katie, Thanks for the info, I am going to look into that board. We have an appointment on Tuesday with the genetics doctor and I really like to go in there with some ideas.
  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 completed a 90 gene x-linked mental retardation panel which was normal. All of the doctors at the genetics office were certain that was where we would find the abnormality. I had a difficult pregnancy, 2 vessel cord, gestational diabetes, and was literally in labor for one month. He was born at 37 weeks and 2 days. I am starting to wonder if there is a possibility that his issues are linked to my orthostatic intolerance. I was never myself again after the pregnancy, but did not get significantly ill until he was three months old. I am just wondering if anyone out there has had this happen to them. I really wonder if he just didn't get enough blood while in the womb. I have asked the genetics doctor about EDS due to the hypermobility of his joints, but because there is not really a test to confirm it and it would not explain the delays he is not ready to say that is it. I have nothing to suggest that I have EDS. I find this part interesting because I know that several people with POTS/OI have EDS. He has had a MRI of the brain without contrast and that appeared normal. I just want to figure out what is wrong so that we knwo how to help him. He is already in PT, OT and speech therapy.
  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 interesting that it is a cycle. Eating normally or not eating does not seem to affect my other symptoms, aside from feeling a tad bit weaker than ususal. This illness is such a mystery!
  14. Thanks for all of the replies! I am glad to know that this is normal for dysautonomia. I used to have a stomach of steal. I would go years without throwing up. I now have reactive hypoglycemia so I have to eat or my blood sugar will get too low. In the beginning I was able to drink 100% juice which kept at least some sugar and vitamins in my body. Now I can't drink juices because of my dumb blood sugar so on the days I can't eat I dont have anything to fall back on. I guess we all just have to do our best to eat something when we can. My poor husband would go running out the door to get me whatever I was hungry for the second I said I was hungry. Oh, and I lost over 50 pounds a four month period. I was also going to mention that it was shocking that none of my doctors cared that I was not eating. I literally was in the doctors office on day 21 and 17lbs. lighter than day 1 and all she said was you need to get some protein in you. I seriously started to think I was going to die of starvation.
  15. I actually am not afraid to tell people about my Orthstatic Intolerance. It is so much better for them to know that is why I was fired from my job and that is why I never do anything anymore. And why I now sound like a moron when I talk sometimes. (I have horrible word finding now.) I always try to explain it in simple terms though. I tell them that basiclly there is not enough blood getting to my brain and other vital organs. I recently had my husbands family over for our annual Christmas party. Company is always really taxing on me. I need to have the house spotless for guests and when having a gathering my inner party planner comes out. First of all, these visits happen maybe once every six months. Secondly, I plan everything that needs to get done and do a little each day leading up to the visit. Finally, we had a huge crowd so during times of a lot of commotion I went into another room in order to make myself last longer. If your cousin is coming alone this would not likely be an issue for you. Oh and another thing, even though our family comes from out of town they are never invited to spend the night at the house and typically can only come over during the event. (Sounds harsh, but I can barely handle the gathering.) When my husbands family was here his mom did say, "well you look great." And simply replied that I wish I felt great. When she continued to say that I explained my day to day feeling and explained that I would have rather been in bed at that moment. I usually give an example of something that anyone would clearly understand is not normal. For example, I told her that my heart rate jumped to 130 from sorting laundry for a few minutes. I would tell your cousin about your illness and invite her for a visit if you think you can manage it.
  16. In October of 2011 I had a coupe of weeks in which I experienced a couple of days at a time of extreme nausea and during these days I would barely eat. However, on November 3, 2011 (the night my life changed forever) I got really nauseated. From that day I literally did not eat for three weeks. I would dry heave for hours at a time and the dry heaving would start just by smelling food. During this time I was so sick that I was lying in bed all day. I came out of it and went on a super low fat diet. I ended up having my gallbladder removed. About a week and a half after the gallbladder removal, I again did not eat for a few days. A couple of weeks later I experienced another episode of not being able to eat for two weeks straight. I tried every type of food I could think of, but I could not get it down. I ended up having an emptying study done and much to everyone's surprise my stomach was emptying rapidly. I have not had a long period of not eating since April of 2012, but I still have days that I have to force myself to eat. I get in these funks where I could easily go all day without eating. This feeling tends to come and go. Right now I am eating pretty well, but last week it was a fight. In fact a few days I only had a granola bar and a couple of crackers all day. And it is not really being nauseated. It is almost a feeling of already being full even if I have eaten very little throughout a day. I will start to get nauseated when I try to force the food down. I am really wondering about this because I recently saw an autonomic specialist and he seemed surprised by that particular symptom. I really want to know if anyone has experienced something similar. I am also on Florinef and according to my primary care doctor that should increase my appetite.
  17. I get very tired, very quickly if I am in a place that is too warm. I start to feel like I could just fall over, I have a hard time concentrating. I get nauseated and just have a general feeling of being really unwell. Most the time, it is so bad that I want to take my clothes off, almost like I can't stand to be wearing them. I also have a tendency to get hot flashes. I will suddenly just get really, really hot in a room that is not warm. I have to turn on an overhead fan in order to cool down. This will happen in a room in which my husband is cold, and he used to always being complaining about warmth before me. When this happens I will feel like I am going to start pouring sweat, but I don't really sweat.
  18. I have been mostly homebound for the last 16 months. I stopped driving 9 months ago, so that has taken away a lot of independence. I have a 19 month old baby so I hang out with him all day. I sit on the floor and play with him. I have also been getting a little crafty, just things I can do sitting on the couch. I try to do a least one small chore every day. I am also taking online classes toward my MBA, so that takes up some time. Truth be told, I watch a lot of tv. We have Netflix streaming so I have watched several tv series that I never saw before. I only feel pathetic when I end up watching a marathon of Dr. Phil. I also try to go to a store one time per week with my husband. Some weeks I will have the list made, but I won't be able to actually make the trip for several days, I have to wait until my body is ready. I have been really surprised at home quickly the months have flown by. And during the few instances that I have a good week, my husband and I went out everyday.
  19. I have very similar issues. I have a hard time comprehending what I read. I have re-read several times. I also have found that I have a really hard time spelling. I am an intelligent person and I have had days where I literally could not spell very simple words. I had to give up one day when trying to spell "multi." I also transpose letters sometimes now. When I do this I usually know that it is not right, it just takes me a while to get the right word. I did notice, prior to even becoming really sick that I was making frequent mistakes when typing at work. I would go back days later and read notes I had type and there would be blatant mistakes that my 3rd grader would have noticed. I am on Flroinef and I believe this has helped a little. Last night I was cleaning some around the house, more than I usually do at once and my word finding got really bad. Everytime I tried to say something I could not find the words. It was like I would start talking and then have no idea what I was trying to talk about. It gets really embarassing sometimes because I know that I am intelligent, but a lot of times I cannot hold a conversation to save my life.
  20. I am on Florinef and it gives me pretty severe headaches sometimes. You really should not be mixing NSAIDs with FlOrinef, unless your doctor gave the ok. I looked it up before because both can be hard on your stomach. I usually try an ice pack for a little bit and sometimes Tylenol helps.
  21. *specialist next week and will be asking him if my potassium levels should be checked. I don't add salt to everything, but I don't worry about my salt intake either.
  22. I am taking Florinef also. While on .1mg I felt no difference, but after going up to .2 mg per day I had about 10 days that were pretty great. I wanted to run out the door everyday. I still could not drive and I still needed a nap each of those days. I then got a sinus infection and have not been back to that better feeling since. I am not on salt tabs or potassium though. I am seeing an autonomic special
  23. Thanks, Alex! I have not had that test. I knew someone would be able to explain it to me!
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