Pins and needles, numbness, throbbing and aching pain in my right hand, arm, shoulder and side had become my new normal. Now I am having seizures as well. The doctor deemed these transient seizures and not to be concerned. I am now taking Gabapentin which has helped lessen the symptoms. I do have some fatigue and dizziness from this med. Has anyone had similar experience?
Thanks!
Liz,
Yes, that is probably your new normal. I have all the same symptoms except for the seizures. I have it in both hands and sometimes in both arms. You have to keep pushing forward. Think of the movie Nemo…"Keep swimming, keep swimming… Lynn
Good afternoon Liz,
ADEM caused a TBI is my occipital lobe on the left side. All of my seizure symptoms are on my right side. They are:
- Located mostly in my right foot and calf and right hand, arm and shoulder
- Sometimes go further, but not very often
- Numbness
- Pain: like someone pushing their fingers into your muscle
- Pain: tingling, pins and needles
- Congestion feeling like when you get your blood pressure checked but all over
- Complete numbness: this is the extreme
- Dizziness
- Fatigue (horrible fatigue, cognitive and physical)
Yup, this qualifies as a seizure. How do we know this mystery? I started taking an anti-seizure medicine Lamotrigine and it reduced the symptoms.
Other than that, life is great! 
Hi Liz,
I had very bad seizures after being discharged from the hospital. My body would freeze up, my legs would stiffen, and my arms would come fold up rigidly under my chin. Intense pressure shot up through my temples.
Safety is a big concern with seizures of course. I hope your home is safe and that someone’s with you as much as possible. I went back into the hospital and they videotaped me for a couple of days and looked at the seizures and then put me on Tegretol. This worked well, and after a couple of months I was weaned off of it and the seizures are gone now totally. Sleeping as much as I could, eating healthy food, and exercising as best I could I think helped a lot. Also took all the vitamins recommended by others on this site and what I read in articles.
I never lost consciousness during these spells, so I’m not sure if the word “seizure” was just a catchphrase or what-- nobody seemed to know what to call them!
Phoebe
Lynn, Occipital and Phoebe,
Thank you all for your responses. Although I am of course troubled for you all with these crazy symptoms, your words and experiences bring me great comfort. I tend to get pretty frightened and seeing you cope and hearing about recovery means so much. Most of the day, when I am not in pins and needles, numbness, seizure etc mode, I feel good. I am taking Gabapatin and aside from some side effects, it seems okay, but the side effects include dizziness and nausea. My seizures are similar to yours Phoebe in that my hand would stiffen into a fist and bend to the side, I can’t move my arm and can’t move my right leg. I was in excellent health before the onset of ADEM which in my case was caused by a vaccination. I had been following the medical protocol, including these vaccinations, for acceptance into the Peace Corps and boom! I now have a second disabling illness (in 1992 I was diagnosed with Graves’ Disease). I read about Jellinek’s protocol for MS and am using that because, yes, like you Phoebe, I am eating healthy, fresh foods, exercising and resting when I need to. Occipital, I’m glad to hear you say life is great! And as you said Lynn, we gotta keep swimming!
I’ll post when I hear more about getting hooked up with a neurologist here in Boston.
Liz
Hi Liz my son is on the same medication. He does go to bed earlier that he used to 10pm as opposed to working to 2 am in the mornings. He complains sometimes of the muscle spasms but it seems to be under control with the medication. Wishing you continued improvement. Our neurologist in one of the podcast I listened to suggested Acupuncture as a natural alternative but it can be quite expensive if insurance does not cover it. For now we are just using the prescribed medication as it seems to be working. Wishing you continued improvement.
Hello All,
I am Tony and my wife is Lisa…she’s 54 and diagnosed in August . She started getting seizures this past Friday …hadn’t had them before…she is on Keppra and is monitored by camera 24 hrs…she’s at a University Hospital in Philadelphia…she has had steroids, plasmapheresis, and 14 days of chemo…very slow progress …
I wanted to post about seizures since this is a new symptom…she’s in ICU right now…
Hi Tony I will pray for you and your wife. My son had no seizures but was on medication as a preventative measure. My son is recovering very slowly. He seems to have undergone the same treatment as your wife. The chemo finally stopped the lesions from growing. It is 19 months since his ADEM attack. Recovery is very slow but there is recovery. We still have +/_ one more year for hopefully a full recovery according our neurologist but everyone is different, hopefully your wife recovers sooner. Just take one day at a time I am sure everything will be fine but it all requires plenty of patience.