PackersFan

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

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!

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.

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?

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?

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!

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?

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??

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!

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?

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).

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.

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?

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.

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!

Joann I would be interested in hearing about it! Thanks

Ok thanks Corina!

My GP wants to send me up there after years of testing with no answers. But since my TTT 2 months ago and now the Electrophysiologist saying I have dysautonomia my GP says to ask the Electro Dr and see what he thinks about me going up there. If I do go up there do any of you know a good Dr to go and see? I saw some names listed in this site up there but was wondering if any of you had personal experience with any? Thanks

During the TTT, the first part was pretty normal. Nothing really happened from the laying down, to the upright position. It was when he put the nitro under my tongue that my heart rate jumped up, blood pressure dropped, and then i passed out. I'm a little confused now though. The Dr. said that dysautonomia can be a primary issue and not just secondary to something else. I've been going to Dr.'s for the past 3 years to try and figure out what's going on. All tests have come back normal except for the TTT. I've been to a neuro the past couple years for fatigue/wekness feelings that come and go. Plus the twitching, (i was convinced of ALS for a bit). But MRI's, EEG's, NCS' all came back fine. I don't get a lot of infections. I do feel like this all really started about 3 years ago after some serious GI issues in which nausea and stomach pain was around for a month and they couldn't find anything wrong. I finally went to a naturopath and he treated me for a parasite and it cleared the issue up. I will say this though. At the tail end of the GI issues i had an upper endosocpy and after that procedure from a couple years ago the heady, off balance feeling has come. I wonder if something happened during that procedure or if the drugs they gave me messed something up. I have no hyper mobility. Every once in a while the GI issues flare back up, but for the most part it's pretty good. The symptoms are mostly feeling off balance and a little dizzy/lightheaded feelings. I also get issues in the morning right when i wake up where it feels like i'm going to die. Feels like my heart is racing but i check my bp and hr and they're both fine. Wondering if cortisol levels are off or something. Thoughts? Thanks for the response!

I have my month follow up with my electrophysiologist this week. I saw him last month after my TTT and he said I had dysautonomia. (he's actually the one that pulled up this web-site on his laptop in the office and introduced me to it). He started me on Florinef. Not sure it's made much of a difference the last month. I'm gonna go over all my symptoms again and see what he says. I'm wondering if there's anything specifically I could/should be asking him. Fire away any questions that I should bring up. Definitely plan on asking him about the muscle tension and feeling of 'adrenaline dumps' and see if we can check my cortisol levels. My GP doctor wants to send me to Cleveland Clinic because we haven't found anything for years and he's not sure what else he can do. But he said to see what the electrophysiologist says. I'd like for him to confirm its for sure dysautonomia and not something else. Any medications I should ask him about that could help with symptoms? (Dizziness, fatigue, weakness, twitching, anxiety) Thanks all

Hey all, Anyone else get this feeling of muscle tension when you wake up in the mornings? It's like the moment I open my eyes I feel like I need to tense all my muscles and move around. I just lay here and tense up or "make a muscle" feeling in different parts of my body. Also, any thoughts in adrenaline dumps in the morning? There's mornings when I wake up and I feel like death and it usually takes an hour to pass (BP and bpm are normal during these times). And does anyone else have a symptom of really fatigued/weak legs that comes and goes throughout the day? Thanks!

Hey Terrier, We're both new here. I'm 31 and male as well. I also try and lift a couple times a week to put on some size. I'm interested in the symptoms that you're having. I've been dealing with the 'mystery symptoms' for years and was just recently diagnosed with 'dysautonomia'. These symptoms such and are such a pain. Today I'm dealing with the unexplained feeling of collapsing but my BP and heart rate are fine. So I took some anxiety meds because the frustration of feeling crappy makes me wanna punch something. So if you don't mind- I'd be interested in hearing your list of symptoms. Thanks

Hey all, Thought i'd post and see if any of you have felt the same way and any tips you may have. I've been dealing with "mystery symptoms" over the past 3 years. Have gone to numerous Dr.'s and had numerous tests. My symptoms (which have changed over the years) are mostly this "heady" feeling where i feel unsteady and off balance, muscle weakness, twitches, and some GI issues. The worst are these feelings that something is wrong and i can't describe it. I'm sure it's produced some anxiety in my life. I was sent to have a tilt test done last month. The first part of the test was fine, nothing happened. But then they put the nitro under my tongue and i ended up passing out after a few minutes. The Dr. told me he thinks i have "dysautonomia" and started me on Florinef to see if that helps at all. I don't have POTS as my blood pressure does what it's supposed to do from lying, sitting, to standing. I do have lower blood pressure 100's/60's usually. The Dr (electrophysiologist) started me on Florinef to see if it helps at all (so far i don't really think it has- it's been about a month). My heady/imbalance feeling comes regardless of sitting, standing, or lying down. The muscle weakness and twitches are what really got me freaked out over the past year or so and landed me in multiple neurologist appointments and tests checking for MS, or ALS or something. All came back fine. So...3 years of symptoms and here i am. A new diagnosis of "dysautonomia" (oh and they did find i have mitral valve prolapse about a year ago). I've read a lot of different things and am just wondering if anyone else has felt this way? The random muscle weakness and constant feeling of imbalance/unsteadiness is frustrating. I also just have times where i just feel horrible, not a specific symptom but just on over all feeling of "crappiness"-ha. Ya just feel like something is going wrong in your body. It's frustrating being 31 years old and having a young family, but day to day not sure how i'm going to feel and wondering if theres something seriously wrong with me that the Dr's just aren't catching. I guess i'm wondering if these symptoms are normal and how do you deal with the diagnosis of "dysautonomia" and not worry that there's something even worse going on that they aren't seeing? thanks for your time in reading this!