Hi all, first time post. I have had this for the last 23 years. My left side has never been the same. I had to stop running but overall I did fine. Over the years my left leg now limps a little. This last year it seemed like my legs were getting weaker and in the last few years my hips and back have a lot of pain when I bend. So I decided to get my kids and I exercising. We were going to the gym 3 times a week. Well almost three weeks ago I had a dizzy spell at night but no biggy - have them once in a great while when I am doing too much. Took Motrin went to sleep and woke up fine. About a week later I woke up in the morning so dizzy that once I got up to go to the bathroom and came back to bed I was spinning so bad I thought I was going to be sick. Never had I felt like that before. It took hours before I could get up. So this is where I need help, ever since, I get this feeling like I am on the verge of it happening again and now I am having like panic attacks. I am taking Valium and that is saving me. Acupuncture is working but if I go longer than a few days it comes right back. I hate drugs and only have had to take the Valium on 4 different days. I can’t seem to get that tightness feeling to go away. Any thoughts? Thank you so much for a place to write too.
Hi Homemaker. I'm wondering whether your dizzy spells feel more like the room is spinning (vertigo), or like you're really light-headed (symptom of dysautonomia). I've had both before, and also get anxiety. If you have vertigo, it may be that you need to decrease your fluid intake and salt intake, but if you're light-headed, you may need to increase both-not decrease. As for the panic attacks, I personally don't berate myself for taking a benzo. I'd personally much prefer taking one than suffering a full-blown panic attack. We're all different, but you're amongst company.
Thank you so much for reply. It is better to respond to email or on the web=
site? Definitely vertigo. What causes yours? Are your panic attacks due=
to the out of control feeling? I used to think gentle exercise increased t=
he blood flow threw the neck and that helped. What o you think? Tell me mo=
re about you?
I will look into that dysautonomia. I thought it was going away but it seems to be coming back. Does it come on this fast? Now I do not even want to go shopping. Thank you for the info.
So sorry homemaker- I just now saw your posts. I don't know how to PM or email you (I'm a computer dumbie), but if you PM me, I'll give you the email address I really use, not the one I registered with and never check. I don't know what triggers my vertigo, but an ENT mistakenly diagnosed me with Meniere's disease. I have the hearing loss and plugged ear feeling accompanying the vertigo, which would all make you think Meniere's. I argued with the ENT that I didn't have life-long hearing loss and vertigo, but that it came on overnight in May of 1997. That's when I first got dysautonomia too, and when my whole life fell apart. I've been essentially bedridden since that day I got sick in '97. It happened over the course of ten minutes! from perfect health to so sick I wanted to die. TO THIS DAY no one know what made me sick. The only possible explanation is that methanol (a fatal chemical) was found in my medicine by a very renowned laboratory. No one wanted to deal with this truth- not a single attorney at the time and not a single doctor since. I was just slapped with the diagnoses of a chiari malformation, dysautonomia, and Lyme disease. I've been near death several times since 1997, hospitalized more times than I can count, almost completely bedridden, through more panic attacks than I can count, and have taken thousands upon thousands of pills to no avail, had three skull surgeries to no avail- you name it. So I'm sorry that I can't tell you what causes my vertigo. The panic attacks come on suddenly, and the anxiety and physical signs start at the same time. ALL OF THIS is to be expected with methanol exposure. It's a blessing that the chemical didn't kill me, as that's what it usually does. I've never mentioned any of this on the internet before, because even though I have rock solid proof that methanol was found in my medicine, I'm more than likely to be viewed as crazy, or worse yet, diagnosed as crazy. Sorry to have run off on that tangent, but I don't think you'll get anywhere by comparing your case with mine. Mine's just way too bizarre. Now I have to hope I'm still welcome on this board, as my brain herniation is 100% legitimate. The only difference is that instead of being born with it, I acquired the herniation when my brain became permenately swollen in response to methanol exposure. Sure THAT isn't what you were expecting to hear. Sorry I couldn't help you. Best of luck.
Maggie
Maggie said:
So sorry homemaker- I just now saw your posts. I don't know how to PM or email you (I'm a computer dumbie), but if you PM me, I'll give you the email address I really use, not the one I registered with and never check. I don't know what triggers my vertigo, but an ENT mistakenly diagnosed me with Meniere's disease. I have the hearing loss and plugged ear feeling accompanying the vertigo, which would all make you think Meniere's. I argued with the ENT that I didn't have life-long hearing loss and vertigo, but that it came on overnight in May of 1997. That's when I first got dysautonomia too, and when my whole life fell apart. I've been essentially bedridden since that day I got sick in '97. It happened over the course of ten minutes! from perfect health to so sick I wanted to die. TO THIS DAY no one know what made me sick. The only possible explanation is that methanol (a fatal chemical) was found in my medicine by a very renowned laboratory. No one wanted to deal with this truth- not a single attorney at the time and not a single doctor since. I was just slapped with the diagnoses of a chiari malformation, dysautonomia, and Lyme disease. I've been near death several times since 1997, hospitalized more times than I can count, almost completely bedridden, through more panic attacks than I can count, and have taken thousands upon thousands of pills to no avail, had three skull surgeries to no avail- you name it. So I'm sorry that I can't tell you what causes my vertigo. The panic attacks come on suddenly, and the anxiety and physical signs start at the same time. ALL OF THIS is to be expected with methanol exposure. It's a blessing that the chemical didn't kill me, as that's what it usually does. I've never mentioned any of this on the internet before, because even though I have rock solid proof that methanol was found in my medicine, I'm more than likely to be viewed as crazy, or worse yet, diagnosed as crazy. Sorry to have run off on that tangent, but I don't think you'll get anywhere by comparing your case with mine. Mine's just way too bizarre. Now I have to hope I'm still welcome on this board, as my brain herniation is 100% legitimate. The only difference is that instead of being born with it, I acquired the herniation when my brain became permenately swollen in response to methanol exposure. Sure THAT isn't what you were expecting to hear. Sorry I couldn't help you. Best of luck.
Maggie
Hi Maggie, I am so sorry about what you are going through. I can't even imagine. I appreciate that you wrote. It means a lot. What is methanol? What is it in? I am starting to figure mine out as just plain nervousness. I have been like this since I was a kid. Everything freaks me out. The vertigo I still don't get. How does having a malformation cause vertigo? Can you believe I have a doctors appointment in January. That is the earliest. How do you take care of yourself? I hope God is with you at all times to give you the strength you need. Please write again if you need to talk. Suzanne
Maggie said:
So sorry homemaker- I just now saw your posts. I don't know how to PM or email you (I'm a computer dumbie), but if you PM me, I'll give you the email address I really use, not the one I registered with and never check. I don't know what triggers my vertigo, but an ENT mistakenly diagnosed me with Meniere's disease. I have the hearing loss and plugged ear feeling accompanying the vertigo, which would all make you think Meniere's. I argued with the ENT that I didn't have life-long hearing loss and vertigo, but that it came on overnight in May of 1997. That's when I first got dysautonomia too, and when my whole life fell apart. I've been essentially bedridden since that day I got sick in '97. It happened over the course of ten minutes! from perfect health to so sick I wanted to die. TO THIS DAY no one know what made me sick. The only possible explanation is that methanol (a fatal chemical) was found in my medicine by a very renowned laboratory. No one wanted to deal with this truth- not a single attorney at the time and not a single doctor since. I was just slapped with the diagnoses of a chiari malformation, dysautonomia, and Lyme disease. I've been near death several times since 1997, hospitalized more times than I can count, almost completely bedridden, through more panic attacks than I can count, and have taken thousands upon thousands of pills to no avail, had three skull surgeries to no avail- you name it. So I'm sorry that I can't tell you what causes my vertigo. The panic attacks come on suddenly, and the anxiety and physical signs start at the same time. ALL OF THIS is to be expected with methanol exposure. It's a blessing that the chemical didn't kill me, as that's what it usually does. I've never mentioned any of this on the internet before, because even though I have rock solid proof that methanol was found in my medicine, I'm more than likely to be viewed as crazy, or worse yet, diagnosed as crazy. Sorry to have run off on that tangent, but I don't think you'll get anywhere by comparing your case with mine. Mine's just way too bizarre. Now I have to hope I'm still welcome on this board, as my brain herniation is 100% legitimate. The only difference is that instead of being born with it, I acquired the herniation when my brain became permenately swollen in response to methanol exposure. Sure THAT isn't what you were expecting to hear. Sorry I couldn't help you. Best of luck.
Maggie