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Seizures (possibly non-epileptic) and Hashimoto
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gregbrighte_75 posted:
Hello everyone,

I'm hoping to hear some tips of where I could possibly go next to find a solution to the seizures I've been having for 12 years. If anyone can point me help, I'd be very grateful

A short summary:

- focal seizures on left side of body
- always at night, usually at bedtime, frequency once/twice a week
- seizures are motor seizures
- chronic headaches on left side of head, pressure behind left eye
- after seizures, the next day electrical shocks/zaps from behind left eye, down arm
- strong post-ictal headaches
- stiffness or tension in left side of neck/face/eye days between a seizure
- 2-3 day build-up sensation BEFORE a seizure, seizures are predictable (more tension, headache, pressure), so much that I often massage or hold ice to left side of face many hours before a seizure
- No abnormalities found in MRI or EEG
- No response from AED, lyrics, keppra
- allergy to oxcart/trileptal (itching skin after first tablet)
- recently diagnosed hashimoto's disease, hormones ok, elevated anti-bodies
- thyroxine doubled seizure rate within 3 weeks
- antibodies to lyme found once. Three further tests were negative
- No epilepsy in family

I'm lost and I honestly don't know where to turn for help anymore. I have a box of lamictal waiting to be tried out, and I guess that'll be the next step. But, I'm not sure if something else might be causing the seizures:

Could the hashimoto's be the cause of it? In 2003 my thyroid was normal, but I was already having seizures (once a year). This year the frequency is about 50-75 a year and my thyroid is, according to my doc, "very striking". Could it be Hashimoto encephalopathy? And if so, how do you test for that?

Anyone have any further thoughts? Really looking forward to you comments!

Thanks,
Greg
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dancer86442 responded:
Hello Greg,

Yes, your Thyroid could/would be an issue for increased seizures. I hope your DR is trying to get That under control. As for Test: Only your DR would know. Have you tried Googling or WebMD Search for answers?

Have you seen an Epileptologist (seizure specialist) ? Has your Dr talked to you about Psuedo-seizures? Yes, they are known as 'fake' seizures, but, there is Nothing Fake about them! They are just as much a danger as Epilepsy. These can be caused by physical or emotional Stress. Thyroid issues would mean abnormal Stress to your System. If they are Psuedo, AED's won't do you any good. The fact that EEG's & MRI's are negative should be a Warning to your DR.

Are you keeping a Daily Journal? More Info under Tips. It Does Help You & Your DR!

Another consideration: A Chiropractic Specialist may be able to help w/ the Chronic Headaches & possibly the Seizures, also.

Food for thought. Wish I could Help you more. Did you post your questions in WebMD Answers, too? Maybe Dr Radtske (sp??) mite have some answers.

Keep talking w/ us. You never know when a 'lurker' may come forward w/ More Answers.

Love Candi Merry Christmas
 
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gregbrighte_75 replied to dancer86442's response:
Hi Candi,
Thank you for taking the time to reply to me! It's greatly appreciated
I'll be speaking with my doctor about the thyroid in a few weeks, my hormone levels are ok, but the antibodies are high, hence the Hashimoto's disease diagnosis. I actually have seen a number of epileptologists, even stayed at a specialised clinic for two weeks. There they could not figure out what my seizure disorder was and sent me home. Their suggestion was to see a doctor that specialises in pain. At the hospital there could not com to a conclusion because the EEGs and all the other tests were not indicating epilepsy - that's the good thing, I'm neurologically healthy (good to know!)Hmm pseudo-seizures or psychogenic seizures...if that was the reason for the seizures, I could definitely live with such a diagnosis! Assuming my seizures are psychogenic, how would one go about getting rid of them? I've seen a psychologist about my seizures, and although he gave me a ton of ideas that helped, I still have them just as much as before. Where do I go from here?Currently, I'm not keeping a journal, because my seizures seem to keep a strict schedule. As crazy as it sounds, they usually have a pattern, up until I started with thyroxine for Hashimoto's, they were a week apart, i.e. if I had one on Friday, the next weeks or months they'd always fall on a Friday. After a while however, they might skip the Friday and come on a Sunday, and then they'd stick to Sunday nights for a few weeks. Now however, they're every few days...I cannot unfortunately find a trigger. Certain things may aggravate them, such as watching TV in the dark before bedtime or playing computer games. Unfortunately, we've never been able to capture anything on an EEG, which makes me think my seizures have more to do stress or when I'm concentrating too much. :-/Who exactly is Dr Radtske? (Pardon my ignorance)

Would it be worth a try trying lamictal for my seizures? I'm thinking if previous AEDs haven't worked, why would Lamictal work, considering my MRIs and EEGs have all been fine (2x MRI, and probably 20-30 EEGs, many with light simulations and hyperventilation).

If anyone cares to join in, I'd love to hear from you!!
Merry Christmas!
 
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dancer86442 replied to gregbrighte_75's response:
Hello Greg,

IF what you have is Non-epileptic seizures, then No, AED's, supposedly, Won't work. Counseling & anti-depressants are common treatment. Another treatment is Neurofeedback. I don't have any Info on that. But, you can lurk on coping-with-epilepsy (link in Resources) to Learn more.

But, Greg, like you, All my tests were Norm! And an AED, after 10 yrs of 'trial & error AED's', did Work!

The DR I mentioned Used to be on this Epilepsy Group to Help. I guess he decided we didn't need his help or else I ran him off. But, when I was replying to some of the WebMD Answer posts I noted he was Helping answer those questions.

Greg, you just named 2 Major Triggers for Seizure activity. TV in dark room & computer! Have you discussed those Triggers w/ your Dr? I'm not a DR, but, I know I would Jump on those Triggers as a Possible Cause! Photosensitive Epilepsy! So, a suggestion: Polarized (prescription) glasses & anti-glare screens for tv & comp.

You do know a Norm MRI is Good, Rite? No tumors or cysts or other abnormalities. But, if I were you, I would Insist on a Portable 24-48 hr EEG. (I had one done 5 yrs ago & seizure activity Was, finally, noted. Seems it was just too deep in the brain for normal EEG's to Note. ) Then if that came back negative, a Video EEG. Speaking of, is anyone available to record your seizures at home? A Video Journal of seizure activity can be a Plus. Plus, get started on a Daily Journal! Your seizures have a pattern, so, maybe there is an underlying pattern, also.

Greg, I know you want More feedback from others'. Unfortunately we are lacking Members who are informative & visit on a regular basis. I've been holding down the fort for quite a Number of yrs, hoping others would join & stick around. Seems FaceBook is Now everyone's 'Support/info' source. I'm not sending you away, just giving you another Source for possible Info! Try the National Seizures Disorder Foundation. There are other Groups, but, I find this one the best, so far. But, Please continue to visit me here, too.

Love Candi Merry Christmas!


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