another update: need advice please

[aprilmitt]

See my post below. So, I spent just one night in the hospital and had a few "events". The doctor said that based on the eeg they were not seizures (which is good) so I'm really back to square one. What am I experiencing? The seizure specialist and my MS dr. decided they will up me medicine (tegretol) to 600mg 2x/day (1200/mg day). So as has been the pattern it works for a week or two and then I get these episodes again. So I came home from hosp on Friday. Started the 600mg Friday nite and have not had an episode since. it's now been 5 days "event" free. I'm wondering why the tegretol works for a few days and then stops? My dr said that if I have these episodes again, then we're going to stop the tegertol and do something else.. what else?????? any input would be appreciated although I don't really know what anyone could say. TIA

[jreagan70]

Hi April:

Thanks for the update after what must have been a very uncomfortable night.

It would have been nice if your neuro had an idea of what to look for next. It sounds like he's hoping the Tegretol works this time so he doesn't have to come up with one.

I can only think of 4 things, and the only one your doctors haven't looked at seriously yet is some form of migraine.

The other 3 possibilities that have been suggested don't fit.

1. TIA. You've had an MRA and your doctor doesn't think your episodes are TIAs. The duration of an hour does fit with a TIA, but the ear pulsations and the nature of the visual effects don't fit a typical TIA.

2. Seizures. You've had 2 EEGs that didn't show seizure activity, and your doctors -- including the seizure specialist -- don't think your episodes are seizures.

3. Paroxysmal symptoms. The consistent 1-hour duration doesn't fit with paroxysmal symptoms. If you read up about them from various sources, you'll see that the standard description of them is that they last for a few seconds to just a few minutes, maybe 2 to 5. I've never read any description that says they last as long as an hour.

That leaves migraine, of which your symptoms are more characteristic. It would be more typical if you also had head pain along with the episodes, but "silent" migraines don't have pain. The lack of headache doesn't rule out migraine.

It might be worthwhile to ask for a referral to the best migraine specialist in your area.

In the meantime, if you have more episodes despite the max dose of Tegretol, your doctor might consider trying a different anti-seizure med. It might be that the med works even if the cause of your episodes is never found.

I hope you can see a migraine specialist and that someone comes up with some answers for you.

[laurasari]

I always thought migraines were bad headaches that make you nauseous and bedridden. That was until I had pain behind one eye with a cloudy peripheral vision in the same eye. I thought and still think it was from the Gilenya I had recently started. I went to the eye Dr and after many tests he said I had migraines. So maybe they are migraines. Mine have since stopped and I stopped the Medes they gave me and I am still on the Gilenya. Since Feb.
good luck I hope they find a solution
Laurie

[aprilmitt]

thank you

Thank you JReagan and LauraSari: I made an appt to see an opthamologist next week. It's now been 6 days on 600mg of Tegretol and so far so good. However, I know that's not really the answer altho I'll take it for now! Yes, JReagan, it was a very uncomfortable night in the hospital. So glad it was just one night and glad I'm not having seizures. My fear is that it'll start again when I begin work in sept (teacher) Im doing whatever I have t o do to resolve this over the summer. Can an opthamologist diagnose migraines?? Is that the correct dr to see? TIA so much for your input. JReagen; you seem very knowledgable, are you a dr or do you just have lots of experience?? ((

[TinaP303]

Hi April,
Yes, an ophthalmologist can diagnose migraines. I went to one when I had some visual "weirdness". He diagnosed them as migraine auras. I had no pain.
Sadly I've had painful migraines since then, but I still sometimes get the painless auras.
I did have a VEP test and there is no problem with my optic nerves, so the auras are caused by the migraine.
So much not fun.

[kelm10]

Good suggestions

My family has a strong seizure background. And, I work in the healthcare industry. I am surprised that they have not suggested a 72 hour EEG. That is pretty common thing to see.

Seizures is often brought on by stress when you are having seizure issues. So, you not teaching during the summer has relieved stress from you.

It may be that it is not seizures. But, wanted to throw that out there. Seeing a migraine specialist is probably a good step after the eye doctor. Often, migraine lesions show up on MRIs.

[aprilmitt]

sorry

Sorry i didn't reply sooner. I was on a weekend vacation in fl . ) Thanks for the responses. Kelm: I did the 72 hour eeg at home and another one in the hospital. Both showed no seizure activity. I have an appt Wed with eye dr. We'll see what she says.
What I find so weird is the way the symptoms are evolving. They began in Jan with 3 second "weirdness..lol" where it felt like my eyes were not working together and I felt pressure between my eye. (so hard to explain..part of the problem when I'm talking to drs) these 3 second episodes increase in frequency to up to 32 to 50 to 90 in one day (that's when I started tegretol) Then on 5/29 they became what I'm now experiencing..these hour episodes. I have to assume they are related somehow cause why would the 3 second ones stop and the hour ones start? If they weren't related then I would still hae the 3 second ones. .. ugh.. idk.. so confusing.. It's been 10 days on the 1200 mg/day and so far so good... waiting..just waiting..