Not Epilepsy!

[sjconner]

I finished my appointment with the neuro at the epilepsy clinic. She doesn't think I have epilepsy. She thinks that the visual hallucination, etc that started all this might have been from migraines. All of the rest could be from the meds. The neuro indicated that I am over medicated and have probably taken too many different meds in too short a time period. I am supposed to start tapering off my meds. If I have problems then she wants me to call and it will be re-addressed. YEA!

I feel so relieved. I was at the point where I didn't know if I was coming or going.

Thank you so very, very, very much for all support you all have given me over the last year and a half!

 

[Cint]

That is great. What did she prescribe for the migraines?

 

[lindsayschu2]

Wow awesome! Great result, so glad to hear!!

 

[arnie]

Congrats!

 

[sjconner]

I have been taking sumatriptan. It works pretty well.

Cint, thank you for all your help!


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[valeriedl]

One of the meds that I tried taking sumatriptan for headaches but it didn't do anything. I have problems with pain meds working in general.

Is there anything else that you tried that I might be able to ask my neuro about? What didn't work for you might work for me.

 

[Dolores]

Thanks for sharing your good news! :hugs:

 

[CQ:)]

Thats great news SJ

 

[sjconner]

The first AED I tried was topiramate. It is also used for migraines. It worked well for the migraines but I couldn't handle the side effects.

The visual stuff I had was images of people talking. She asked about it and I think I may have remembered it wrong and told her the wrong thing. It was so long ago. I am going to the GP to give him her notes. I am also going to get a copy of his notes from the day I saw the people. I am curious.

The doc seemed really irritated during interview. I wonder if it was because of the amount of meds I was taking.


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[Nakamova]

Good luck and keep us posted! I'm sorry to hear that the doc appeared irritated -- I hate getting that kind of vibe from someone who's being paid to help me feel better.

 

[sjconner]

The more I think about the appointment the more confused I am. I have a call in to my regular neuro's nurse to ask her about it. I tried to find info on complex formed hallucinations on the internet. She suggested that they may be part of a migraine. The only ones I could find were for seizures, schizophrenia, and migraines after a coma. I don't have schizophrenia. I have never been in a coma. I do have migraine auras but they are the typical ones. We never even discussed waking up and not knowing anything. I really don't think that I am so inattentive that I would be missing chunks of time. So I am confused and a little concerned.

She was also surprised that I had an appointment with a clinical psychologist. She asked me why I was going. I thought that, if there was any doubt about seizures, a recommendation to go see a mental health provider was fairly standard.

Believe me, I do not want to have epilepsy or seizures. However, I have more questions than answers. Yesterday, I saw my Primary Doc. He feels the same way I do.

 

[chmmr]

I think you have to go with your gut. Keep your other appointments-it can't hurt to view it from all aspects.

I will say that when my daughter was tiny, we were in the dr's office and he witnessed a suspected seizure. We went to the hospital had an eeg, the tech reviewed it but the neuro was busy. Went home and got called back later because the eeg was abnormal. Then we got there adn they had decided not to start her on phenobarb after all because the childrens hospital decided over the phone that it was "sleep myoclonus" even after the abnormal eeg. Fast forward through me trying to interpret weirdness in a preemie (with a twin brother), eventually putting her on meds at 6 months, getting frustrated with a neuro that either wanted to medicate or call everything sleep myoclonus and not even have had an MRI so i got a second opinion. But the second opinion was the other neuros boss and she decided i was nuts and my daughter didn't have any seizures so after a week long stay in an EMU (when she hadn't had any epsiodes for over 2 months), they declared her fine and took her off meds. Waited 2 years and was told to ignore everything and she would outgrow whatever it was. Did another eeg at 3 years old and it was the worst she has ever had, that was february i think, then in april she had the first obvious complex partial, then 2 months later another, then in september she clustered and was put back on meds.
Anyways my point of that long spiel is that when it's anything other than a convulsive seizure it can be very very hard both for the patients, their families, and the docs to diagnose. You have to trust your gut, and try and write down what happens as best you can every time so that you can get to the bottom of it.

Oh and yes i have definitely heard of hallucinations coming with migraines-my middle son actually had visual and auditory hallucinations a few weeks ago and migraines was one of the first things our ped suggested (followed by seizures).

 

[Cint]

I have TLE and have experienced hallucinations during a CP. On one occasion,I can remember just looking at my arm like it was floating in mid air and hearing a strange noise. After the seizure was finished, I was fine. And several other times, I've "heard voices" before going into the seizure. Plus migraines and epilepsy are cousins, so it can be difficult to diagnose which is which.

http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure

Common symptoms during a seizure.

Awareness, Sensory, Emotional or Thought Changes:
Loss of awareness (often called “black out”)
Confused, feeling spacey
Periods of forgetfulness or memory lapses
Distracted, daydreaming
Loss of consciousness, unconscious, or “pass out”
Unable to hear
Sounds may be strange or different
Unusual smells (often bad smells like burning rubber)
Unusual tastes
Loss of vision or unable to see
Blurry vision
Flashing lights
~Formed visual hallucinations (objects or things are seen that aren’t really there)
Numbness, tingling, or electric shock like feeling in body, arm or leg
Out of body sensations
Feeling detached
Déjà vu (feeling of being there before but never have)
Jamais vu (feeling that something is very familiar but it isn’t)
Body parts feels or looks different
Feeling of panic, fear, impending doom (intense feeling that something bad is going to happen)
Pleasant feelings

I also get migraines and for me, I only see those black spots before the headache starts. Here is some info on epilepsy vs migraines:
http://www.epilepsy.com/information...disorders/migraine-epilepsy/clinical-features

 

[sjconner]

The neuro's nurse spoke with the neuro and called me back. Of course ... I missed the call ... and ... it was after 5:00 ... and ... it is Friday. She left me a message that he wanted to discuss the results, etc with me. Well ... duh ... that is why I called.

When I talked with her earlier, I specifically asked about the consulting neurologist's recommended med taper. Does he want me to do or not do the taper? Does he want me to use the schedule that the consulting neuro recommended? Her message didn't include any info about tapering off of lamotrigine. I wonder why she didn't say anything about the taper off of lamotrigine.

I have never had to go get a second opinion. Am I wrong asking for confirmation from my neuro before I make a change recommended by the consultant? I trust my neuro and would like his input before I make changes. I am not sure of the correct way to do things. I think I am more confused and turned around than I was before. I probably read too much into things, over-analyze stuff, and worry too much. I see the clinical psychologist on Monday. I know her and she is pretty no-nonsense.

BTW ... when I have migraine auras (typical zigzags), I never have a headache. When I actually get the headache part of a migraine, I never have an aura. Strange.

Looking back through the posts ... I have drifted off (just a little, teeny, tiny bit) from my original posting

 

[kaelieh]

I'm curious to see what happens with your case, even though I have a history of seizures I had been seizure free and off meds for 4 years when I started getting frequent migraines and shortly after the migraines started I began having partial seizures. My neuro is already sending me to a specialist for further evaluation because she's not sure what's going on.

If you don't mind sharing more info about your appointment, what led the DR to leaning against epilepsy?

 

[sjconner]

I am not sure. I flew to Denver. I talked with her for about an hour. I flew home. I meet with my neuro tomorrow.

 

[juzzyk]

Hi there sjconner

I have temporal lobe epilepsy and have had visual hallucinations, complex visions of people and objects etc. I also have had migraines but the visual symptoms have been quite different (zig zag over one eye). I'm on medication which helps with both anyway.

I think if I were you I wouldn't make any changes without consulting with your original doctor who suspected epilepsy. Hallucinations can be caused by a number of things so the doctors need to take account of your other symptoms. There may have been some piece of information your neurologist was privy to that the consultant wasn't aware of.

 

[sjconner]

I met with the neuro yesterday. Nothing we have tried has worked; the meds might be a part of the problem. PNES? To cover all my bases, I have started seeing a clinical psychologist. We are going to taper off my meds and see what happens.

I just reduced my 200mg tegretol. I am currently on 100mg/day tegretol and 600mg/day lamictal. I should be off tegretol next week. I am supposed to reduce the lamictal by 50mg per week. I hope it isn't as bad as coming off of topamax. Giving up the 25mg/day just about killed me psychologically (literally). Coming off klonopin mad me a wreck; it almost broke up my marriage. I posted my tapering schedule on the fridge. I told my DH to call our PCP immediately if I start losing it. We live in a really, really small town and my hubby is his mechanic. Our PCP is in DH's speed dial.

 

[Nakamova]

BTW ... when I have migraine auras (typical zigzags), I never have a headache. When I actually get the headache part of a migraine, I never have an aura. Strange.

That was the case for me too. But I haven't had any of the zigzag stuff at all since the onset of tonic-clonic seizures/epilepsy diagnosis 13 years ago. I don't know whether that's because the e-meds are keeping the zigzag stuff at bay, or whether the zigzag stuff evolved into the tonic-clonics. I never get auras, that doesn't seem to be my pattern.

Good luck with the tapering. Don't forget that it's okay to pause the tapering or ask for it to go slower, if you start to feel yucky. My personal philosophy = small increments/slow taper, so the brain can really adjust at each step-down.

 

[KarenB]

I've never heard of hallucinations accompanying a migraine (lights and that sort of thing, yes, but not actual images of people talking and such). My oldest son (the one who doesn't have epilepsy) has had migraines since he was 5 (mostly outgrown as he hit teen years and adult years), and the only hallucination he ever had was after several days of no sleep & intense training (Hell Week) (interestingly enough -- everyone in the rubber dingy had the same hallucination -- spirits of dead people that they knew floating over the water -- my son saw his Grandma who'd passed away about a week earlier).

My youngest son, who has temporal lobe epilepsy, does have hallucinations in the "aura" period leading up to a Tonic-clonic.

It's my understanding that hallucinations are most commonly associated with temporal lobe epilepsy and schizophrenia. In your case, why are they ruling out epilepsy?