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!
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!View Thread