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  1. I'm having these moments where i feel like i need to tense and twist my muscles. Like tensing my back or curling my toes and rolling my ankles. Sometimes i feel like i need to just ball my fists up and squeeeeeeze!!! It adds to the annoyance and frustration of how i feel. But it also makes me a bit concerned about possibly having a neurological condition that's affecting my muscular system. Already been through the gammet over the years of MRI, EMG tests, etc....all came back normal. Anyone else have these issues with their muscles? I do try to keep a constant weight workout routine that seems to sometimes help all my symptoms (the muscle tension is one that's come and gone and am experiencing now- i haven't worked out the last week so i don't think lifting causes these feelings). One of the main reasons i lift (besides health benefits and the desire to add size) is to keep my mind sane of not having a disease like ALS or MS. If i'm not getting weaker, rather stronger, my muscles aren't being atrophied and i'm "in the free". weird...i know. So, any thoughts, suggestions, opinions, would love to hear. thanks
  2. Hey Everyone, So i know with dysautonomia we have 'bad days' and 'not-so-bad days', rarely if ever do we have normal/great days. So i'm writing to get some ideas on what i've recently experienced. We had a large conference going on a couple of weeks ago and it was really busy. I was driving around everywhere, not eating consistently at all, up late and up early, speaking multiple times, etc... In the midst of it all i was like "man, i feel really good". I'm looking back on those 3-4 days and am almost positive i was symptom free. I mean i was tired at points, but it was like a 'normal' tired you'd get from not always getting enough rest. So, was it just sheer adrenaline for those 3-4 days? Needless to say.....i'm back to being symptomatic again. Muscle weakness, lightheadedness, low blood pressure, and such. Was the magic for three days straight? I felt so........great!
  3. Anyone else have low "normal" blood pressure but still have off balance/heady/dizzy without spinning feelings? My bp is in low 100's/ 60's. Happens often. Gonna start back up on florinef and see if it actually helps.
  4. Hey all, Question for everyone. After being diagnosed with dysautonomia did you seek a second opinion? After years of Dr visits and the barrage of tests I get a TTT test done about 6 months ago and the electrophysioogist tells me I have dysautonomia (even though the TTT was fine until he made me put the nitro under my tongue...and I passed out/fainted). So we've gone back and forth on florinef because of my low blood pressure (which I've had my whole life and has never caused issues-plus I don't have POTS- just the other crappy symptoms). I was also found to have mitral valve prolapse. I'm just wondering if it's worth seeking out a second opinion to make sure the diagnosis is correct. I'm sure it can't hurt. My EP said he'd even send me to Cleveland Clinic if I wanted to get a Dr up there to take a look. Just not sure on what to do. Do I just buy the diagnosis and get on with the management of symptoms or what?! The more I read about mitral valve prolapse with dysautonomia the more I'm like "that's me". But this stupid illnesses is so broad and so many varrying symptoms your stuck wondering....is it something else????!!!! Also, have you ever just had times where everything in your body tenses up and you just grit your teeth and feel like you need to just haul off and start punching something??!!! Is this what a panick attack or anxiety attack feels like? I was just having a normal night at home and BAM this feeling of tensing all my muscles and feeling like spazzing out hits me. It's happened a few times in the past 2 years and I just go punch a pillow or wait it out. Weirdest/scariest feeling!! Thoughts?
  5. I'm well aware of the dangers of sugar and dysautonomia. My question is the delay of the reaction. Is it normal to eat something sugary ( candy, chocolate, Starbucks drink) and not feel crummy until hours later and maybe not even until the next day? I feel faint, panicky, imbalanced, and overall just out of it. Also, can consuming sugar cause someone with dysautonomia to have a drop in blood pressure?
  6. Ann- This is really interesting. I actually noticed a lot of my headdy/dizzy feelings a few years back after I had an upper endoscopy. For the past few years all these random symptoms progressed and got worse. Finally diagnosed with dysautonomia. I told my Electrophisiologist and my chiropractor that I wondered if years back something happened during that appointment. They both said that my upper neck (atlas and axis bones) could have gotten tweaked due to the nature of the upper endoscopy and how they can move your head/neck around. With the nervous system all running through that area I wonder if this is the cause. Very interesting!
  7. Issie- not sure. For dinner I had a PB&J with a side of cottage cheese. Maybe that's the real culprit. Is dairy bad for people who have dysautonomia?
  8. Yesterday I had a craving for a Iced DECAF caramel macchiato from Starbucks. I gave in and got one (I gave up coffee a while ago because I felt like it was bothering me- even before I was diagnosed with dysautonomia). But this morning I felt like death! My stomach has been a wreck and I feel off balance and "fainty" even though BP and HR are normal. Does decaf do this to you? And can it actually affect you the next day? Like a delayed reaction??
  9. Twitches were my worst enemy about a year ago. I was CONVINCED I had ALS. But after numerous neuro visits and me stopping the "google muscle twitches" and freak myself out for weeks they started to subside. Still have them come and go, but nowhere near what it used to be. Like others have said Magnesium is great!
  10. POTLUCK- really interested in your running comment. I think I'm noticing the same thing but mine is with weight lifting. If I keep my normal lifting schedule of 3-4 times a week I think I feel ALOT better. I don't do cardio for the sheer fact that I'm trying to gain weight and put on some muscle. Thoughts on why it's working like that for you? Or anyone else have any insights on physical exertion and the benefits to dysautonomia?
  11. I'm here. Definitely been a struggle to talk about it. Often times on my crappy days I say nothing, my wife doesn't even know. Guess it's pride and our innate nature to not express our feelings and what we're going through. Definitely a challenge. I know I don't talk about it because you feel like your burdening the people around you. You hunker down and do what needs to be done (total dude philosophy right there).
  12. It was not goo for me either. I took it towards evening and woke up the next day with sweat, shaky/jittery feelings and had to go back and lay down and call off work. Was rough stuff for me.
  13. Hey all, Just wondering if in the attempts to raise my blood pressure by taking Florinef it can cause symptoms? I was taking it once a day and my Dr just increased it to twice a day. Does your body take time to adjust to a new BP? Mines was normally in the 100's/60-70's and now it's getting close to 120/80. Just been feeling a little shaky and heady/faint feeling. Wondering if its taking time for my body to acclimate to the new blood pressure. Thoughts? Experiences?
  14. Had my month follow up with the electrophysiologist today. He put me on florinef last month, seems to maybe be helping a bit. I've tracked my bp and hr over the past 10 days and showed it to him. I've stayed mostly in the 100's-110's/60's-70's. He up'd the dosage to twice daily, we'll see how that goes. The interesting thing he shared with me (which may help some of you that have this issue) is in regards to what i think are "adrenaline dumps". Sometimes when i wake up in the morning i'm so out of it and i feel like i need to keep tensing my muscles. At the same time i feel like my heart is racing, but when i check my bp and hr they're normal. He shared with me the issues in that i may be having in the 'Vagal System' which is directly linked with my endocrine system and the issues with adrenaline. He said that it probably isn't balanced either which is why i have these issues in the morning and that it takes time ( an hour or so) for my body to level back out with the adrenaline issues. Anyone else familiar with this? If we don't see much improvement in another month he's sending me up to the Cleveland Clinic for a second opinion. Just trusting in God and medicine that things are getting better everyday.
  15. I've been on it for a month and i think it's slowly been helping with my heady/imbalance/dizzy feeling. My Dr. told me it'd be a while and it's a process. I actually had my month follow up today with him and showed him my blood pressure tracking over the past 10 days. It's been in the 110's / 60-70's. I still have a some of the dizzy issues amongst other things. He bumped up my prescription to taking it twice a day now to see if that helps. So far it seems to be slowly doing something. I still have days where my bp is low and i feel a bit faint/dizzy, but overall i think it's improved. As far as side effects. I'm a guy (and i'm pretty slim) so the weight gain was a welcomed side effect. I gained maybe 2-3 lbs over the past month. It's definitely not muscle though as i can tell i look a little softer even with all my working out. I get slight headaches every once in a while but i'm not sure they're related to the florinef. It seems like i'm usually pretty sensitive to medications and i can honestly say other than the small weight gain i haven't really noticed anything. Overall i've had a good experience with it!
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