My story is posted "seizures and migraines, but don't know if it's epilepsy" I am having some new troubles though. Ever since this past weekend, I've been noticing that my arms and hands will stiffen and freeze. After a couple seconds, sometimes longer, it relaxes again. Sometimes it is one side, sometimes it is both arms. Sometimes it is my feet and then legs. The other day I watched it start in my foot, go up my leg, then down my arm on that side and my arm was shaking. Then my leg relaxed and then tightened again. It is quite scary! Yesterday was really bad because it was happening off and on all day long. I don't know if it had anything to do w/lack of sleep from the night before and stress from being at nationals w/my cheerteam or not. But when we got to the competition I coudnt even coach my kids because it was so bad. Like nonstop. Limb after limb. And at some point I was really out of it. I get like that sometimes, as well afterwards. Only semiconscious I guess. The mom sitting next to me who was a nurse kept hitting me and telling me to breath, but I do remember that I was. But she kept telling me that I was holding my breath and I'd pass out if I kept doing that. After my girls were done, she called my dad back home and told him my lips were blue and I wasn't breathing well and all this stuff was going on. They thought I was on my deathbed so my parents were mortified. I was freaked out myself, until I was too out of it to realize what was going on. Anyone else have this type of problem? Afterwards I always have a noticeably worse migraine. I go back to the doctor Tuesday, but I wish I could go back tomorrow cuz it scares me. I still have the problems, though not near as bad as yesterday. I have just stopped taking topamax completely though. I think it is that drug. Anyone else have similar problems on it? I take it for migraines, but was just tested for seizures. I'm so scared! And sooooo exhausted today, and my muscles are really sore. I've been drinking a lot of gatorade, too cuz that nurse told my dad I could have an electrolyte imbalance and she's never seen anything like what I was going through before.
April
April,
It sounds way too early to suspect Epilepsy (or anything but withdrawal, for that matter); especially since you say you just stopped taking this med. Your doctor is looking into it, probably nothing to worry about. However, if there is cause for any concern, I'm sure your doctor will know and test further. I certainly hope you weaned off of the medication properly and exactly, per the doctor's instruction? It sounds like you came off of it too quickly, IMHO.
p.s. Here are links; many of these express the side-effects of Topamax as you have described. I hope this will put your mind at ease until the doctor puts this to rest:
http://www.google.com/search?sourceid=navclient&ie=UTF-8&rls=GGLR,GGLR:2006-11,GGLR:en&q=Topamax
Psalm 3:5;6;7;8
It sounds way too early to suspect Epilepsy (or anything but withdrawal, for that matter); especially since you say you just stopped taking this med. Your doctor is looking into it, probably nothing to worry about. However, if there is cause for any concern, I'm sure your doctor will know and test further. I certainly hope you weaned off of the medication properly and exactly, per the doctor's instruction? It sounds like you came off of it too quickly, IMHO.
p.s. Here are links; many of these express the side-effects of Topamax as you have described. I hope this will put your mind at ease until the doctor puts this to rest:
http://www.google.com/search?sourceid=navclient&ie=UTF-8&rls=GGLR,GGLR:2006-11,GGLR:en&q=Topamax
Psalm 3:5;6;7;8
"Trust in the LORD with all your heart and lean not on your own understanding;"
"in all your ways acknowledge Him, and He will make your paths straight."
"Do not be wise in your own eyes; fear the LORD and shun evil."
"This will bring health to your body and nourishment to your bones."
Post Edited (Neurotransmissing) : 3/20/2006 6:45:43 AM (GMT-7)
THe weird stiffening and relaxing was happening before I stopped taking the topamax. It scared me and that's why I stopped taking it. Literally just stopped yesterday.
Whatever is going on from these past couple days is new, from the past couple weeks. THe past couple weeks, I've been having weird episodes where I stare and zone out and shake. Sometimes I pass out after I relax again, sometimes I don't. Sometimes I don't remember what happened. I'm usually unresponsive to people around me when it is happening, but I know it is happening when it does. I am always out of it and dumb feeling coming out of it, like when you come out of anesthesia and don't know what is going on. But recently, this limb stiffening has started and I have been completely aware of it, so it terrifies me.
April
I don't have any answers for you, awight. I just wanted to wish you the best of luck tomorrow. Please let us know how this turns out. I know there's an answer somewhere in this.
All the best,
c&c
so I went to my neurologist today and showed him what my arms and foot were doing. He told me I was fine. nothing is wrong. i just have migraines. So he pretty much told me that I am crazy. Said it was all in my head. my EEG was normal. No MRI. HE told me not to think about my hands and it won't happen. I look like a gorilla in my dance classes. He thinks I'm just depressed or something and I'm totally not!! I just want this to stop. I don't know where it came from. He just blew me off and is trying to tell me I'm making all this up. Why in the hell would I make this crap up. I hate doctors. I hate the ER. I hate everything. I still have a headache. He told me to wait a week and see if this goes away. what if it's an electrolyte imbalance. I know that stuff is nothing to mess around with. I had a blood test yesterday but don't know the results. I'm so mad. I don't know what to do. I'm a freak.
April
April
You are not a freak, awight. You are a woman with a medical problem which is new to you, physically painful, frightening, and which is not yet responding to treatment. Your doctor is, like many I have known, IMO an a**h***.
God bless you. Hopefully, this is temporary.
c&c
When is your Spring Break? Are you going home? Can you get some better medical care then? This is nothing to fool around with. Have you spoken to your folks about this?
xoxo emmie
xoxo emmie
xoxo emmie
SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia
I already had spring break last week. That is when things started to get a little worse. I don't live far from my home. I have to go where my school insurance covers, which isn't too much in this big corn field. But I may just have to go somewhere else and not worry about the insurance. My parents are mad,too. My mom told me to see an internist. I'm going back to the doctor on campus who actually wanted to help me and see what he says. It's kinda weird cuz everyone badmouths campus docs, but this one actually wants to help me. I guess I don't have a typical college kid sickness, either though.
April
April
April,
You're right! Go see the doc who wanted to help. And if need be consult with someone else even if it means seeing someone outside the covered plan. Are you covered under either of your parents' insurance plans? Dont mean to be nosey--just hope you can get some help.
xoxo emmie
You're right! Go see the doc who wanted to help. And if need be consult with someone else even if it means seeing someone outside the covered plan. Are you covered under either of your parents' insurance plans? Dont mean to be nosey--just hope you can get some help.
xoxo emmie
xoxo emmie
SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia
So I went to the doctor on campus today. And he ordered 2 MRI's. ONe of my head, and one of my spine both with and without contrast. They are set for next week. He sat there and watched all my involuntary contractions, and is completely baffled, much like everyone else I come across. I'm relieved that it's not from electrolytes but still would love to know what it is. He told me he thought the seizures and everything else that has happened were migraine related, but he just didn't know about the spasms. He also really thinks I need a spinal tap but I for sure am scaread to death of those. And he said it's really up to my neurologist. So he told me I really need to go back to see him, which I don't want to do. I'm supposed to call next week though....He also said this could be from the topamax, but it may not be. The drug might just be the innocent bystander or whatever. I just think it's very odd that nothing happened until after I was on it.....But I've been off of it for 6 days now so it should be out, or almost out of my system and this is still happening.
I still also have some instances where I stare and shake and zone out for a bit. Usually my limbs shake when they are contracting really tight, but if both arms are shaking I've noticed it lasts longer and I zone out. I am still interested to find out why my left leg is not involved in any of this. It's the strangest thing. At least I'm getting a workout of isometric contractions, like those little electric impulse thingys without even trying
I have to laugh about that.
I've been totally outcasted from some of my dance classes. I was so upset yesterday I was crying and that NEVER happens. But everyone there thinks I'm a freak and are scared of me or whatever and everyone totally avoids me, especially when we need partners....I'm sick of all the rumors and the looks I get from them all. I tell you. The dance department is very caddy. I just want this semester to end and figure out what is going on!
Last night an athletic trainer that I know wanted to assess me and this is what he found:
Myotome-C1 3/5
R leg L3/L4 for hip flexion 4/5
L leg S1/L5 knee flexion 4/5
Ligament sprain T9-T10
Tight Iliopsoas-FABERS test +
Neck Extension -30degrees.
So, he found that yes, indeed, I do have a headache and neck problems. He found my ligament sprain in my midback, and my lower back problem (which is a degenerated disc between L4-L5) all without me telling him anything. Pretty cool how they can do that. He also does not think I'm crazy because he tried to take my mind off my contracted arm at one point and it didn't work. He told me I probably need an MRI of my head and spine. So I guess the doctor agrees! The only thing now is that my school insurance pays 80% for each test, but my CO-PAY is going to be $335 and $670. I don't know how I'm going to come up with that. I'm trying to see if I can make payments...we'll see.
April
I still also have some instances where I stare and shake and zone out for a bit. Usually my limbs shake when they are contracting really tight, but if both arms are shaking I've noticed it lasts longer and I zone out. I am still interested to find out why my left leg is not involved in any of this. It's the strangest thing. At least I'm getting a workout of isometric contractions, like those little electric impulse thingys without even trying
I have to laugh about that.I've been totally outcasted from some of my dance classes. I was so upset yesterday I was crying and that NEVER happens. But everyone there thinks I'm a freak and are scared of me or whatever and everyone totally avoids me, especially when we need partners....I'm sick of all the rumors and the looks I get from them all. I tell you. The dance department is very caddy. I just want this semester to end and figure out what is going on!
Last night an athletic trainer that I know wanted to assess me and this is what he found:
Myotome-C1 3/5
R leg L3/L4 for hip flexion 4/5
L leg S1/L5 knee flexion 4/5
Ligament sprain T9-T10
Tight Iliopsoas-FABERS test +
Neck Extension -30degrees.
So, he found that yes, indeed, I do have a headache and neck problems. He found my ligament sprain in my midback, and my lower back problem (which is a degenerated disc between L4-L5) all without me telling him anything. Pretty cool how they can do that. He also does not think I'm crazy because he tried to take my mind off my contracted arm at one point and it didn't work. He told me I probably need an MRI of my head and spine. So I guess the doctor agrees! The only thing now is that my school insurance pays 80% for each test, but my CO-PAY is going to be $335 and $670. I don't know how I'm going to come up with that. I'm trying to see if I can make payments...we'll see.
April
Have you had an eeg? Any blood work? Thyroid checked? Any antibodies checked? Thyroid antibodies?
emmie
emmie
xoxo emmie
SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia
I had an eeg,2 or 3 CT scans in the ER, lots of bloodwork testing for everything. They've all come back normal. The only thing I've had since this stuff started was the blood test to check everything. The EEG was a couple weeks ago, but normal. I hope the MRI tells me something.....
April
April