Seizures, any one else?

[ambersorganics]

Seizures? Does anyone with behcets have a "seizure disorder?" I was just last week diagnosed after many years of utter misery. I am now supposed to be starting the medicine Qudexy XR but wish to know if anyone else is in this slow boat. Thank you, sending healing all around <3

[jzeis]

Hi ambersorganics,

Seizures caused by BD are supposedly rare, but they happen.

Here's some information from pg 46 of my book (Behcet's disease: MyModernHealth FAQs)

"Q: Can neuro-Behcet's cause seizures?

A: Yes. Types of seizures include tonic-clonic convulsions (also known as grand mal seizures, affecting the whole brain); partial seizures, including simple focal seizures where the person doesn't lose consciousness and stays aware of his surroundings; complex partial seizures, where the person may or may not remember the seizure itself; and myoclonic seizures, which are very fast jerks or twitches in a single muscle or group of muscles. **These myoclonic jerks can happen to people in everyday life, too; on their own, they aren't evidence for a neuro-Behcet's diagnosis.

"Depending on where a seizure begins in the brain, any of the following symptoms may occur: abnormal muscle contractions; staring spells with or without repetitive body movements; turning of the eyes that can't be controlled; abnormal sensations like numbness, tingling, or skin-crawling feelings; hallucinations; rapid heart rate/pulse; and dilated (big) pupils."

Here are six medical journal articles that you can get online for free:

1) Epileptic seizures in Neuro-Behcet disease: Why some patients develop seizure and others not? (2015)

seizure-journal.com/article...

2) Epileptic seizures as the sole manifestation of neuro-Behcet's disease: complete control under interferon-alpha treatment. (2008)

seizure-journal.com/article...

3) Epileptic Seizures in Behcet Disease (2002)

onlinelibrary.wiley.com/doi...

4) Letters to the editor

: Behcet's syndrome may present with partial seizures (2000)

jnnp.bmj.com/content/jnnp/6... (scroll down to page 5)

5) Cerebral aneurysms associated with Behcet's disease: a case report (2001)

ncbi.nlm.nih.gov/pmc/articl...

6) Cerebral abscesses in Behcet's disease: a case report (2012)

turkishneurosurgery.org.tr/...

I hope this info helps, and that the med your doctor prescribed works for you <3

Joanne Z.

[Guna1003 in reply to jzeis]

Wow thanks for all this info. I will also benefit from this! ☺

[Blearyeyed in reply to jzeis]

This is really useful information.

You are clearly well informed and all of your research would make it easier for many people on the site to find out more about their symptoms of neuro Behcets , especially if they have seizure symptoms .

Would you be willing to put up the info as a general post so all members get to see it.

It could be really useful for people to print off to take to their GP or consultants with less knowledge of BD.

We all know how hard it is to search for the facts on illness, especially when our concentration of eyes are affected , really we should be able to rely on our doctors doing this and giving it to us, but unfortunately, this is often not the case.

That is why this support group is so helpful , and if I could encourage anyone reading this to post helpful articles like the ones you found on the forum I know it would be a great help to us all, and especially for those new to BD or whose illness and symptoms are changing.

Thanks alot .

[jzeis in reply to Blearyeyed]

Hi Blearyeyed,

Gee, I thought my posts were already visible to all members(?) ...at least that's how I set it up when I first joined. If anyone wants to copy and paste this info anywhere else, feel free!

Thanks,

Joanne Z.

[ambersorganics in reply to jzeis]

Fantastic information, I do thank you. I have not been able to get into my account, finally I can thank you. I shall continue to read this in depth tomorrow.

[Guna1003]

Hi ambersorganics.

I have Neuro BD and have seizures. I have partial seizures and migraines so I'm on a different regimen of meds to help both symptoms. I've also had TIA's (Transient Ischemic Attack or mini stroke). Neuro BD is exhausting to say the least. There's always something happening! I've been working on getting a designated suite in the Emergency Room. 😉 I have to convince my insurance that it's medically necessary. Haha!! I hope your new medications put those seizures in their place.

Wishing you good health!

💙 Gina

[ambersorganics in reply to Guna1003]

Gina, sounds so familiar, I am sorry you experience all of this but I am grateful we can understand the similar offenders faced. May I ask what treatment you are on for the seizures/migraines? Do they make you feel any different? I have not even started mine I am just concerned I will be a zombie and will not be able to run my business.

[NerdyChristina]

I habe seizures that my neurologist and rheumatologist both feel are linked to my Behcet’s. They seemed to come along when my flares for more intense (prior to diagnoses), and defied EEG detection for nine years. (There was one that almost had me a diagnosis but it was deemed inconclusive.) Given that’s I have other neurological issues, including hyperactive reflexes, and autonomic neuropathy, they’ve sort of just umbrella covered my neurological issues as neuro disease related to Behcet’s.

We do know the area of my brain where the activity is coming from, and it’s notoriously hard to control. Now, with two medications, and careful lifestyle changes, I do okay. I’m hoping IVIG will just continue me along that road.

It can be scary to see what neuro Behcet’s can cause, but my neurologists have all seemed confident that the damage is a spectrum and can more resembled MS in some patients, like me. (Minus that annoying hyperactive reflex bit!)

Make sure your neurologist is coordinating with your rheumatologist, because if you don’t push it, they’ll never consider the two issues linked...and they may not be. For me, the situation was pretty cut and dry. My last severe flare I lost the ability to walk or feed myself because of my cordination. I never got my fine motor skills back to where they were, which they were weakened already. Now I’m just seeing what else my degrees have prepared me for.

Don’t be bummed if seizure control takes a bit, especially having Behcet’s, too. Message me if you need me. I try and be on more often but I’ve been a flaring pile of mush.

Stats if you’re curious: probably started showing symptoms as a grade schooler since I had tons of mouth ulcers, joint pains, and fatigue. Started looking for a diagnosis at 21, seizures had begun about six months prior. Diagnosed with Behcet’s at age 27ish. Just diagnosed with epilepsy at age 32 but my doctor is sure it’s linked to my Behcet’s disease.

[VickiOliver]

This is so useful. Thank you for posting. When you talk about the mild seizures and eye involvement, does that include a flickering of the eye ball? I get a flickering / mini blackout sensation, almost like a torch that is flickering. It is as though the eyeballs are pulled to one side in rapid spasms.