Anyone had seizures associated with their MS or suspected it to be related to their MS? Tying to the trouble breathing thread, for months I've been having problems when I go to sleep, trouble breathing, short of breath, jerking awake. This past weekend, I went into what felt like a seizure, full body contortions and shaking. Very scary! I'm going to have an EEG.
Sunshine, I'm so sorry that you are suffering.
I can't relate to the seizures-that must be so scary. I can relate to the breathing/sleeping issues-jerking awake, etc.
That was one of my earlier symptoms in my present episode-whatever it is...I haven't been dx'ed yet.
I couldn't fall asleep because I kept having these apneic episodes, where I would feel like I was going to stop breathing forever, then I would jerk awake in a panic.
It is pretty scary.
I'm going to a lyme disease specialist tomorrow-went to a different neuro today and he thinks it is the syrinx on my spine and anxiety.
My final problem that led me to my MS Dx (MRI's, spinal tap and EEG) was severe musclue cramps. Left side. I kept referring to them as a seizure. But medically I guess it is more defined as a muscle cramp. They would come and go. Last for about a a minute os so, and have 2 to 10 a day. This was a couple week period and then perfectly noraml for a few months. My breathing problem is that I just stop breathing. Like I have something I am choking on. Thre is nothing there and it last a minute. Freaks out the family and myself. Best of wishes to you in your treatment.
Hi Sunshine,
I have'nt had a seizure,but I have blacked out a few times.Are you having like an epileptic seizure?My son has what are called Grand Mal seizure,he will shake badly and stiffen,eyes roll and he has a hard time breathing.
Hope you feel well,Dessell
Thanks all for your posts. I don't know what the hell is going on...! It's like a slip into this weird place, let's call it an "aura" place, I seem to quit breathing... I can usually shake myself out of it at this point but last time I was not able to and my entire body contorted and shook uncontrolably, that lasted for about 5 seconds. I'm going in for an EEG next week. No history of seizures and I don't lose consciousness ever. At least I don't think so...
Hi sunshine,
I can't imagine how scarey that must be.I called a friend today,her cousin has seizures and she said she does'nt know when she has them,she like blacks out.Im sure my boy knows when he has them cause when its over he crys and crys.Hope you get taken care of and get some meds to help.
Dessell
I had several seizures which were attributed to MS some four or five years ago. I have read that seizures are not a typical MS symptom but can occur in some. Subsequently I was put on Neurontin and have been free of seizures since.
There is more to the story, however. At the time I coincidently first reduced then stopped my consumption of diet soft drinks that contain aspartame (Nutrisweet). At a meeting last year a neurologist said that consumption of aspartame can cause seizures in people with MS. I was flabbergasted!
So now I am working with my docrtor and have reduced Neurontin dosage with the prospect of eliminating it entirely.
This probably does not relate at all to you, but I am more and more convinced that aspartame is what caused the seizures in my case.
- Roy
I have heard that about aspartame too and quit drinking diet soda 8 years ago, about when i was DXed with MS. However, I have noticed that it seeks into a lot of products unknown to me. I purchased a "light" yougurt that was suppose to have no fat in it but it also had aspartame!
Yes, I hope to have answers soon and THANKS to all who have posted! I do not feel so alone and scared!
sunshine, keep us posted good luck at the neuro's........., and i have talked to u about the herbal remedies....... do u have any side effects from them??? not sure what ones u r taking.......... take care.....
tammy
I have not been diagnosed with MS but have many symptoms. I have "seizures" that I feel a shock or wave through my head and can become confused, lose my balance, limp, speach pauses and can lose what I was saying in mid sentence. I take trileptal and am starting a new drug (new for me) lamictal. Two Neuro's have said I have "Partial Complex Epilepsy"
I have an appointment with my regular doctor on the 4th to get results from my MRI of spine and the blood work that was suggested to have done on the site: B 12 levels, thyroid T3, T4 ect. also copper levels as I have heard the too high copper levels can cause many problems.
The MRI's I had done of cervical and brain show no lesions so MS is doubtful for me. All the best to you and a speedy recovery!!!!
Laura
tammy,
the only side effects i've noticed from herbal therapy is a slight bloated feeling if i take them too close to mealtime. one of them i'm takin gis called Shen Ling Bai Zhu Pian (this is for more stable energy) and the other, i forget the name, but it is more PMS and it totally works!!
I am going in for a EEG this Friday. The waiting is killing me! The good news is, I haven't had any more seizure like episodes. I saw my acupuncturist on Saturday and he added some needles for "eye problems" and it has done wonders for me. I haven't had to take any meclazine for nystagmus all weekend long! The past 8 months I had been taking it almost every day.
I don't know if has anything to do with MS but, I can't sleep at night, the doctor gave me some Restoril to help me sleep. Sometimes in the middle of the night I am not sure if it is a seizure but I wake myself up because my body jerks real bad. Then the muscle cramps in my calfs are horrible! Then when morning comes around I sleep much better. But in 2 hours I have to get up to get daughter ready for school. Sometimes goin to the bathroom to take a leak could be hard. Only a lil comes out!! Going back up the stairs are unbareable. Walking could be a problem. I call myself "Fred Sanford" I get real dizzy at times and I don't do nothing but sit around the house and I am usually so so so tired!!!!
Hi, I was dx ms 9 yrs ago, and I developed seizures about 4 yrs ago. I started losing blocks of time, cause I'm alone alot during the day and I just couldn't remember what happened. Then my husband started noticing I would just "blank out". Their called the BLANK STARES. I guess they are kinda creepy to watch, I have no idea what's going on and I can't move or swallow or anything and I don't even blink. Then afterwards my head hurts SO stinkin' bad it feels like it's going to explode. They can last anywhere from a few seconds to several minutes. I was having them up to 16 times a day now I haven't had one in 3 months. My dr says that I have lesions to close to the surface of the brain and maybe even some touching the grey matter?? It's annoying. I also have had trouble with my diaphram, so I have breathing problems. I'm constantly having to be aware of each breathe or else I'm afraid my diaphram won't work. It can be pretty scary at times, but you just get used to it, right? I wish you all well and I wish this damn disease would just go away for all of us. My prayers are with you all Lacy
My EEG was clear of seizure activity. I am having an MRI this afternoon, brain, neck and spine. It's the first I've had in over 3 years due to insurance reasons. My insurance isn't any better but I'm going to bite the bullet to find out what's going on. I haven't had another bad episode of seizure-like feelings. But I am still having a lot of problems going to sleep at night. My neuro thinks it might be restless legs syndrome. I think she might be right.
Thanks so much again for all the posts on this topic!
I have heard of something called tonic seizures for MS patients which sounds a lot like what Lacy descibes.
Going back up the stairs are unbareable. Walking could be a problem. I call myself "Fred Sanford" I get real dizzy at times and I don't do nothing but sit around the house and I am usually so so so tired!!!!
Lacy
