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Nikki

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Everything posted by Nikki

  1. Hey everyone - I was seeing a neurophysiologist in Hershey, PA for the past few months. She did some autonomic testing and my breathing test and sweat test came back abnormal. She said there was nothing else she could do for me though, so she is sending me to New York to the Dysautonomia Center at NYU. Has anyone ever been there before? I have an appointment for March 19th..The first appointment will be testing - the dreaded tilt table test is one of them. They said I'll have a follow up appointment 2 weeks later with a Dr. Kaufman. I'm just wondering if anyone has had any luck with this place or doctor?
  2. I had the valsalva test done yesterday, and I was just wondering - is your blood pressure supposed to be monitored during this test? I don't know much about it but the people doing the test didn't seem to know what they were doing the entire time.. They had 3 electrodes hooked up (two on my chest, one on my rib) but that was all...or can they measure it that way? Cause I was thinking and I'm 99% sure my doctor said they'd be watching my heart rate and blood pressure, but they never hooked any cuff to me or anything. So I'm not sure if I should call and say something or not. I don't have an appointment until December 20th, so I'd hate to wait and then them not even have all my information.
  3. I voted that 'my symptoms worsened'..that is when I upped my dose. It caused my blood pressure to spike (like 170/145 kind of spike) and it happened often. So I lowered the dose and I was on it for at least 6 months, probably longer - and it didn't effect me at all, so I just stopped taking it.
  4. Rest, eat healthy (add in some extra salt!), drink plenty of fluids..water, powerade/gatorade..and just hope for the best. Congats on getting married.
  5. I recently had some blood tests done, and I always get a copy of the results for myself. They did a catecholamine test and the norepinephrine part came back fine but for the epinephrine, it came back flagged high. It says that the normal range is 0-62, and mine was 94. The doctor that ordered the tests never called me or anything..so I'm wondering if that's a normal number? I guess everything fluctuates a little bit, I'm just curious if anyone knows what is considered too high,
  6. I have the same thing on certain parts of my body. I remember one time I was laying on our couch and the sun was shining in on me..and I guess I had an itch on my hand or something..but when I lifted it to scratch, I noticed that in the sun, everything was see-through! You could see so many veins that I never even noticed before. It was so weird..I guess that's what people mean by 'translucent skin'. I've never been tested for EDS but I definitely have a lot of the symptoms.
  7. This is interesting. I've never seen this site before. I'm definitely going to bookmark it and read it more later! Thanks for sharing.
  8. Hm that's interesting..I know when I had infections and had to be on an antibiotic, my symptoms surprisingly went away for awhile..but then it always come back. I don't know how Mucinex works though.
  9. That's great! It makes it much easier to share with friends and family who are interested in learning more about our condition.
  10. Before taking any medication my heart rate was 134 lying down, and shot up to 180 when I stood up. Now that I'm on Pindolol, it stays under 130 when I'm standing most days. But like someone above me said, my heart doesn't always correspond with my symptoms. My blood pressure on the other hand is all over the place. Just a couple weeks ago I was feeling horrible so I took it and it was like 60/48 and then 10 minutes later it was 130/100. I think that's what causes most of my problems..But sometimes both my heart rate and blood pressure are fine and I still feel dizzy/weak, so I don't know what is going on with me...
  11. I had an EMG and nerve conduction study done a few days ago, and the doctor told me that I have nerve damage in my right leg from my knee down, and my ankle area didn't show any response to the shocks. He is sending me for blood tests to check for about 11 different things (Lyme disease, diabetes, Lupus..and other autoimmune things) but I was wondering if anyone here has had this sort of problem? I'm guessing he doesn't think it's POTS related but I was just curious what you guys thought.
  12. For me dizziness is the worst...Then I would say vision problems - focusing on things especially (though I'm not sure that is 100% POTS, as of now that's all that I know of that could be causing it), and fatigue.
  13. I'm 23 years old, from Pennsylvania. I was diagnosed with POTS in 2009. I've always struggled with dizzines and balance problems but it never was as bad as it was in 2009/2010. I was stuck in bed or just in the house for at least a year and a half. I think for me, POTS was a sudden thing because even though I did have dizziness before, I never had a pounding heart, or chest pains and things like that until 2009. At the beginning of this year, I was diagnosed with having a pseduotumor (I had the symptoms of having a brain tumor, but no actual tumor). I had optic nerve swelling and my vision in my left eye was very warped and I felt like I couldn't see straight half the time. The doctors didn't do anything for me though..and it eventually went away on it's own. Now the doctors I see talk like they're not sure that's what it was. Any doctor I see anymore seems to think there is more than just POTS going on since my symptoms are so severe. I have an appointment at the University of Penn in Philly this October for an all around second opinion, so I'm really hoping this doctor can give me some answers.. Sometimes I sure feel like a 70 or 80 year old lol. Definitely not the typical 23 year old.
  14. I have a lot of dizziness, and get shortness of breath easily too. Sometimes I can do 30 minutes of cardio exercise and be fine, other times I can barely do 10 minutes and I just feel like I'm going to faint. For me it just seems unpredictable. Or if I can exercise for 30 minutes or so, I might pay for it afterwards..but there's that chance that I could be fine and not be badly affected by it. Sheesh, just typing this out - I can see how hard it is for doctors to understand and believe us lol..but it's true..I think certain things bother us one day that might not the next..but then something else will be wrong. I would just try to explain your situtation to your doctor as clear as you can. Hopefully he'll understand and be able to give you some suggestions.
  15. I've only had one tilt table test done and it wasn't as bad as I thought. I was lying down for about 40 minutes because the cardiologist was running late. My heart rate just lying there was 134. Then they tilted me up and it shot up to 180, and my blood pressure went up as well. I never actually fainted, but I felt VERY close to it. I was very dizzy and things were starting to fade out. Eventually standing got a bit easier, and they kept me standing for about 20 minutes and then laid me back down. He said I had POTS. They did have an IV ready, but they didn't have to inject me with anything (I know sometimes they do to speed up your heart) but he said my heart acts like they already did inject me lol. So yeah, I think worrying about it was worse than the test itself. I hope yours goes well!
  16. I agree, it seems like a lot of us can relate to this very much!
  17. It doesn't for me, but I know it definitely can. I think that's a common thing with any medical problem involving the heart/tachycardia, heat usually will make it worse.
  18. It went really well, and it was quick too. They said it would be the judge, a vocational expert & a doctor. My lawyer said he has a good feeling because they very rarely bring on a doctor. He was right. They had the doctor (on the phone) say his testimony. He said he looked over all my records and he thinks I could possibly have post concussive syndrome from when I fainted & hit my head years ago, and now POTS on top of it. He said he thinks with the severity of my symptoms, I wouldn't be able to work. That was it, basically. The judge approved it. I had all these thoughts and mental notes of what I was going to say and was so nervous I'd get tongue tied or forget something important, but they didn't near to hear my testimony at all. I was so surprised and relieved..After going through so many bad experiences with doctors, I figured this one wouldn't understand how bad it is either, but thankfully he did. Before the hearing my lawyer said first of all, no place is going to let me lay down and take as many breaks as I need (which would be a lot)..and he said if you miss 3 days of work per month, there's a good possibility that they won't want you working for them anymore. Which I couldn't imagine only missing 3 days. I'd be lucky if I could show up for a full 3 days out of a month! lol Part of me is sad and upset (and kind of ashamed) that I even needed to try for disability..but I am glad that yesterday went well and that it wasn't nearly as stressful as I thought it would be.
  19. Later on today I have my disability hearing. The lawyer I have is really nice, and said it will be a casual conversation with the judge so I shouldn't get too nervous about it. I was just wondering if anyone else has been through one and could maybe tell me their experience. Cause I am a bit nervous. How long does the hearing usually last?
  20. I was wondering if anyone has any tips for traveling long distance. The thing is, I have bad days and good days..I never know how bad I'm going to feel. My main symptom is dizziness/vertigo. I live in PA, my fiance is from OH. For the past (almost) 4 years of being together, he's done all of the traveling. We were in a long distance relationship for 2 years and since I didn't feel well enough to drive or be in the car for 8 hours, he did the drive once a month so we could spend the weekend together. Now we only live in an hour apart, but he still comes to my house most of the time. Once in awhile when I feel well enough, I'll go to his apartment. His family lives in Ohio, about 6 hours away from here. I don't know why this idea suddenly popped into my head, but I would really like to try and get out there to meet more of the people he wants me to meet and just to see where he grew up. It would be nice. The only problem is, nothing has really changed health-wise with me over the years. Nothing has gotten any better, in fact overall, my symptoms have only gotten worse. I guess I am just in a if you want to do something, you're just going to have to push through it mood right now. I haven't mentioned this to him yet, only because I'd hate for him to be all excited and then me not be able to make it in the long run. :-/ I'm still deciding what to do and if this is even a good idea for me.. I'm okay on back roads, but most of the 6 hours is all interstate. With cars flying by all over the place, it just freaks me out and makes my dizziness worse. Is there anyone who knows of anything that could help this? The 'avoiding' highways route would be 8 and 1/2 hours. I'm debating if that would be worth taking, even if it is longer. Either way, I would plan on us driving half the trip and staying at a hotel, then doing the rest of the drive the next day. Any other traveling tips?
  21. I always get the aura with a headache. Ususally it's only when I drink too much of something that contains an artifical sweetener, though. But it will start with things starting to look all warped and twisted. Then I'll see a bright speck which will turn into full bright zig zags on one side of my vision. Then it blocks out everything for 30-40 minutes until it travels to the other side then fully disappears. I always get a headache afterwards and feel sick in my stomach. But there are times I will see spots and dots for just a few minutes and it will go away. I don't get a headache then.
  22. So sorry to hear that you're feeling down. I can definitely relate. Sometimes the bad times just seem like they'll never get any better. Hang in there though. I hope you feel better soon.
  23. I was diagnosed with migraines years before POTS. My neurologist seems to think I have vestibular & basilar type ones. Where I have more visual symptoms and not so much the headaches. The only time I really get a true migraine is if I drink too much of something with an artifical sweeterner in it. Then I get the full aura where I can't see anything for 35-40 minutes. Then I'll have the bad headache afterwards and feel sick to my stomach. Otherwise, it's mostly just visual things. Which could just be POTS as well. It's hard to tell what is causing what to be honest lol.
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