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Gail R

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  1. Mine are not this violent, usually, and when they are it's usually a one-time 'jump.' I do, however, have almost constant twitching, cramping, and/or spasms. For the last 10 days, my right eyebrow has twitched non-stop. This isn't nearly as bad as muscles jerking so hard you hurt yourself, but the constant twitching is exhausting. I take magnesium, CoQ-10 and ALA for migraine, which has also helped with some of the muscle stuff. I also vape CBD (no THC) which really seems to help with any inflammation going on in my body. I don't like vaping, but it's the only thing that works for me. Talk to your primary dysautonomia physician about supplements that might help. What are your magnesium, sodium, and potassium levels? Sometimes eating a banana or other potassium-rich food just before bed can help. Maybe you've tried this, but maybe you haven't. I feel for you. The muscular involvement is something that I believe doesn't get enough attention and there doesn't seem to be much research going on in that area at all. We all know it's pretty hit-or-miss, and what works for 10 people might not work for 100 others, but if we all share things than help us we might all get there together in the end. My neurologist's spin is that if it works, do it as long as it isn't causing a problem somewhere else. Whatever you try, though, keep your neurologist in the loop. Having documentation in your chart is so very important when you have dysautonomia.
  2. GG: Did you cut out ALL eggs (including cooked in recipes)? I'd be interested in knowing more about that. I, too, feel sometimes like I've "used up" all my strength or muscle usage, even after sitting at my desk all day. There are times when I can barely take the cap off a gallon of milk that was already open, and then I end up spilling some milk when I pour it. I'm curious if either of you have Raynaud's Phenomenon.
  3. I took mestinon--my original neurologist thought I had myasthenia gravis--it's been so long ago I don't remember if I thought it helped. It must not have done much because he discontinued it after a couple of years.
  4. I have unilateral stuff from time to time--mostly left-sided, and mostly related to numbness. The left side of my face sometimes gets numb when I'm experiencing migraine (like today, for example). I don't really lose muscle function or control, but I feel like people should notice that things are lopsided. They don't--I've asked multiple people if they can tell a difference and they can't. My left hand is twitchier than the right, and my massage therapist and chiropractor always have more trouble on the left than the right. I feel more pain on the right, but the real issues are almost always on the left side. Interesting that you also experienced unilateral symptoms, but that yours become more bilateral--mine are increasingly unilateral.
  5. Hi, GG: Honestly, the twitching and cramps and spasms are probably my biggest roadblocks. For a long time I was really worried about having something like MS but when I finally got up the courage to ask, I was told I'd been tested for pretty much everything (MS. Lupus, etc.) and all those tests were negative. It was a huge relief, but didn't get me any closer to the root of the problem. I take magnesium for the muscle twitches, and while I wouldn't say it actually "fixes" anything I do notice a difference when I don't take it so I know it's doing SOMETHING. Magnesium plays a role in nerve conduction and muscle function, so it doesn't hurt to give it a try. My neurologist was happy I'd started taking it. You have to be very careful not to take too much, though. I believe all this happens because my nerves don't work right--plain and simple. My autonomic nervous system is messed up, and for me part of the fallout is that my nerves and muscles overreact to EVERYTHING, in addition to doing things they just aren't supposed to do. There's nothing like working at the computer all day long and having my fingers twitch for no reason. I couldn't tell you the number of times I've accidentally clicked on things I didn't mean to click on because my index finger suddenly twitched. Hang in there. It will stop being a scary thing and become an everyday annoyance. I'd like to say it's something you get used to, but I still struggle with it daily. I've just learned to work around it most of the time, and let things happen.
  6. I don't have orthostatic intolerance. I don't have orthostatic anything. That's what I mean when I say I'm invisible in the middle of an invisible diagnosis.
  7. I hope you've been able to get some answers in the past month or so. It's hard to go into a medical situation where the people who should know things just give you a blank look as if you've just made all those medical terms up. Good luck with your testing. I'd be really happy to hear about any results you get.
  8. Thank you. I really appreciate your kind words. I hope you are doing well.
  9. I'm sorry about your neuropathic foot pain. I have some, but it's manageable and not constant. That must be just awful. I hope you get some answers soon. Keep asking questions and pushing for help. And if you aren't getting answers or help, change doctors. It's a pain to have to retell your story, but it may be the best way to find someone who understands, or at least wants to understand.
  10. Thank you for this. I agree that the fatigue is the worst part. My husband just doesn't get it. I try to explain that when you HAVE to do things you can manage it, but then ability to do the fun stuff suffers. He tries to understand, but he really doesn't.
  11. I'd love to be in touch. I"m not sure how to do that on this site. I agree that diagnosis is tough, but what's tougher is when you finally have a diagnosis and it doesn't really make a difference. I just like having people I can turn to. Thanks.
  12. First of all, thanks to everyone who responded to my feeble wailing. I really hope I wasn't offensive to others with what I said--I'm just so frustrated that so few people get any of this, and that I can't be classified anywhere. To see so much emphasis on one symptom really gets to me sometimes. I hate labels, but in this case labels make the difference between a real medical condition and hypochondria. When I can act like a grown up and stop whining, I do get something from many of the discussions, even the POTS-heavy ones, but somehow it's not enough. I have one friend who has dysautonomia, but her symptoms are nothing like mine so we can only support one another to a point. Now my oldest daughter is having symptoms of POTS or OH in addition to several other things and is going through tons of testing, so at least she and I can support each other. The past few years have been filled with increasing frustration--my neurologist moved away and I was assigned to a new one who followed the party line at his institution and told me I didn't have dysautonomia at all because I didn't have POTS (though oddly enough he NEVER removed the diagnosis from my record), but that I had some form of autonomic dysfunction. He also said I didn't need to see him anymore. Why wouldn't I need to see a neurologist if I have a neurologic condition? I tracked down my old neurologist who only moved 60 miles away, and am now back under his care. That helps some. At least he knows me and I don't have to retell my story. I need to get a new primary care doctor and I dread having to start over, but my current one is kind of a jerk and I'm tired of him blaming everything on my weight. Yes, I'm heavy. No, I can't exercise more right now. No, I'm not going on your weird fad diet. Ugh. I haven't really found relief for many of my symptoms. The muscle twitches, especially in my fingers and around my eyes, are exhausting. I have a new, visible twitch under my left eye that's been going on for about 2 weeks now. You wouldn't think that something so small could be so tiring, but it is. Some of it is simply mental exhaustion, because every time that muscle twitches for no reason I'm reminded that I'm invisible. I have migraine activity that doesn't usually involve pain--though I should say "in the past it didn't" because now many of my migraines also involve some pain. I went more than a year with almost no letup of migraine that involved visual disturbances, mild disorientation, mild aphasia-like symptoms, and downright exhaustion. I also have Raynaud's Phenomenon and take two medications for that, in addition to a med for hypersomnia. I have pernicious anemia, so I take B12 daily. I have always had mildly low blood pressure (when I was in my 20s and 30s, it would run at 90/50 or 100/60, and now that I'm over 50 it's running at 125/75 or 130/80) and I do experience some dizziness, but get this--I can stand up and walk 50 yards, and THEN sometimes I get dizzy. And not all the time. When I've ridden the bus, standing up while it's moving to walk forward to the door just before my stop would make me REALLY dizzy. I've relayed all of this to my doctors and get blank stares. I have vertigo...I have something visual...whatever. None of it ever made sense until I got a dysautonomia diagnosis, and that umbrella explanation for all my symptoms is still a pretty shaky one. My neurologist asked me last fall if I wanted to get started on a boatload of testing to really pinpoint things and at the time I said no, but I think I'm past due for the full battery. Everything that's been done has been piecemeal. The only thing I would refuse at this point is more skin testing for neuropathy--we know I have it, and I'm NEVER letting someone do punch tests again. They just hurt too much. The one thing I think I hate the most about all this is how much of the time I feel sorry for myself. I know that depression is one of the standard issues almost all of us face regardless of actual formal diagnosis, and I really fight the urge to lie down and give up most days, but I get so fed up with pushing for answers and knowing I'm not going to many, if any at all. It helps so much seeing everyone else's symptoms and struggles. It's so good to know I'm really not alone.
  13. I have also had these a couple of times. It could be morphea: https://emedicine.medscape.com/article/1065782-overview I need to have mine checked out the next time one appears. They come and go.
  14. I know this is an old post, but I stumbled on it and liked reading through the list. I kinda giggled when someone posted that you had 'fatigue' twice. I personally think it should be listed more than twice! LOL
  15. There are too many threads to search through--we're all exhausted, remember?--so I'm starting what I hope isn't actually a new one, necessarily. Here's my question for all you DINET folks out there: How many of us are there who passed the tilt table test and don't have POTS? To those who suffer with it, I'm so, so sorry you have to live with such a terrible condition, but I'm actually really tired of feeling like everything in the dysautonomia world revolves around POTS. I'm on a Facebook group in my state and all they talk about is POTS. I hold down a full time job and have a pretty normal life considering all my symptoms. A lot of the time I feel really badly about resenting the focus on a single symptom of my disease, but there doesn't seem to be anyone who can relate to my nearly invisible medical life. I feel miserable about 90% of the time. Just because I can walk around and don't have to worry about fainting when I sit or stand up doesn't mean my experiences with dysautonomia aren't valid. I have dysautonomia with IBS symptoms; temperature dysregulation/difficulties with changing weather and/or seasons; hypersomnia (may be primary or may be due to the dysautonomia - which came first, the chicken or the egg, in other words); muscle twitches, spasms and cramps (how many of you have had some very small muscle twitch for DAYS - my worst was the distal end of a small muscle around my eye that twitched for 28 days without stopping and my latest was several days of the muscle along my top lip that people could actually see at times); small fiber polyneuropathy; chronic, unexplained pain...Sheesh! That's enough, don't you think? I know having POTS sucks, and I'm sorry for those who have it. I truly am. I know of many people who can't even sit upright, and I have the utmost compassion for those who have to live with it day in and day out. But what about those of us who don't have it? People see us going about our daily lives and and don't believe us because we have jobs and can do most normal things on most days. We must be making it up. We're total hypochondriacs. Or maybe we do have something minor wrong with us and we're playing it up to get attention and sympathy. And when I try to go to a group online for support and to commiserate a bit, all I see is POTS everywhere. The worst is when people on my Facebook group take my questions or comments about not having POTS and turn them into POTS discussions. Come on, people! I can't be the only person on this Earth with dysautonomia without POTS. Would someone please help me out and share your non-POTS stories and struggles and help me when i share mine?
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