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FMS ForumsGeneral & SupportUpdate and Seizures
02/14/2012 11:28 AM
Gramma815
Posts: 168
Member

First, the good news. I'm still walking a mile in the morning, noon and evening on my ilicptical machine. I've not lost any weight, even giving up soda. But, I'm walking.

The seizures I'm having are getting closer together and I'm not remembering what's happening anymore. So, Savella wasn't the cause of the seizures. I had a really hard time sleeping last - kept waking up. This morning my husband asked me if I was ok, asked me if I remembered last night. I do, vaguely. Normally I remember everything that happens during the "seizures" but this last one is just a vague memory of calling for help. He gets me to the nearest place I can lie down and watches me until I go to sleep. I'm way too big for him to try to pick me up- he just guides me to bed, before I fall. I don't seize, exactly, its just more of loss of control - not the seizing kind you think of. I've had MRI's, x-ray, neurologist - no one can tell me what causes the seizures. They seem to only happen in the evening and have only been happening since last Sept.

Is this a progressing of fibro?

Reply

02/14/2012 11:33 AM  Top
ushie
 
Posts: 1928
Senior Member

Hi, I'm sorry you're going through this; I've never heard this associated with Fibro. Is there an accident involving head trauma in your past? After my hubs was in 2 car accidents involving concussions, he began having seizures.

02/14/2012 11:44 AM  Top
Gramma815
Posts: 168
Member

Thanks, Ushie.

No accidents, lots of head trama when I was a child. But nothing has ever shown up on MRI.


02/14/2012 11:46 AM  Top
mem1318

I have no input, but be careful. Is this happening daily? Looks like Dr would admit you in for a sleep study or hospital to be able to run test at time of seizure. Have you talk with your PCP? They seem to be able to pin point things over some specialist. I truly hope you get some type of answer, for your sake and hubby. One more question are you laying down when this happen? Pray that you are having a better day. Blessing RW

02/14/2012 11:49 AM  Top
hatbox121
hatbox121
 
Posts: 10493
Group Leader

No I don't think this is fibro. I've never heard of seizures being a symptom/sign of it. I know you said MRI and such, did you do an EEG(a long one, not those short ones)? Sounds like you need a second opinion.
Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt

Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).

I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences.

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02/14/2012 03:38 PM  Top
fibromom23
fibromom23
 
Posts: 172
Member

my mom began having seizures toward the end of her life, they did tests for MS due to this, but it turns out it might have been the meds she was taking..she was at one point not able to drive anymore and had to wear a helmet in the house because they got real bad..until they could find the right medication to put her on for them to control them and took her off all the fibro meds..

02/14/2012 04:40 PM  Top
girlfriend
girlfriend
 
Posts: 1592
Senior Member

Gma, I also have seizures.. I have spent 3 days in hosp hooked up the the brain wave thingy.. you know the elcetrodes they glue to your head ... this was all recorded including the filming of the entire events... tehy were one right after the ohter... I still have them, just had one last night.. some are worse than othrers... cause unknown but mayo called them 'seizure type episodes'... so in some shape form or fashion hubby and i both were left with the impression they are related in some way to the fibro.. ms and epilespy are ruled out from the testing and mris.... i take klonopin for them... doesn't stop them but does lessen the severity.....

glad to hear about the walking! u are doing great!!!

Don't dread the storm, Learn to dance in the rain!

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02/14/2012 04:48 PM  Top
mem1318

I knew it was some type of test but could not think of the name. thanks girlfriend.

02/14/2012 06:39 PM  Top
mabri
mabri
 
Posts: 4708
Group Leader

Gramma,

I am so sorry that you are going through this. I myself have never read anything or heard anything about seizures being part of fibro. I don't know where you are seeing a dr at, but I might suggest if you have a large well known hospital anywhere near you that you go there. Make an appt with a dr there. It is very important that you get this diagnosed. Apparently this is a new thing. If you need help finding a hospital, let me know and I'd be glad to help. I'm very worried about you.

Great job on the walking! That is sooo awesome! Keep it up!!! HUGS

Please do not take anything I say as medical advice. I am not a doctor.

**Becky**

02/15/2012 02:23 AM  Top
faieriemama
faieriemama
 
Posts: 3345
VIP Member
I'm an Advocate

Gramma has your neuro suggested that you go in hospital for a 5 day EEG test? I have black out "seizure" episodes with my Basilar Migraines, like you said just a loss of control. When they first started I could remember and was aware of what was going on as they progressed I can longer remember or hear. I'm on meds for them and fortunately don't have them often anymore. Has your neuro tried you on any anti-seizure meds? Do you ahvd pain of any kind before or after the seizures? This sounds serious and I will pray that the docs figure out quickly what is wrong and can help you find a solution to slow them down or stop them completely. In my prayers and thoughts big hugs and loads of love.

healingblessingcircle

Post edited by: faieriemama, at: 02/15/2012 02:25 AM

I'm not a medical professional, I can only offer advice,if you need medical attention please see a medical professional.

Don’t compare your path with anybody else’s.
Your path is unique to you.
— Baba Ram Das

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