new to seizure since Dec '12 - a little frustrated...

[Bobbi]

Having my first seizure ever in December (I'm 57) I am now scheduled to see 2 seizure (epilepsy) doctors. One in Feb & another in March. I had another appt but do not feel comfortable since they set me up with a resident doctor and maybe the head of the epilepsy department. This is my choice.

I also started having side effects recently (headaches, hoarseness) after my tiredness got better. Hoarseness so very annoying. So I contacted the neurologist that I saw when I was in the hospital-lets call her Dr. H. Took 3 days for her to call me back. She never heard of this as a side effect so she prescribed a new medication (can't recall the name) but told me to stay on my current meds (keppra 1000 mg 2x/day) until I see the specialist to wean me off of the keppra. Turns out she tells me she's not a seizure specialist! As a novice patient and a non-med expert did I know this? Why didn't the hospital have me see a seizure specialist in the hospital while in ICU!! So I also decided not to start another med until I get to see a specialist! Why be on 2 meds prescribed by a non-seizure neurologist?

Anyway this is still frustrating. I can say I have been seizure free since December unless I have something in my sleep that I am unaware of. All tests showed nothing so I still do not know why this occurred. Dr. H said stress could not cause it. But she is not a seizure specialist!? Am I crazy here or what? I am looking forward to seeing the two specialists and seeing what they recommend. One takes my insurance the other doesn't but I can do an out of network claim.

My goal is to be off of meds one day and driving again as my lifestyle and my husbands is hurting.

Any comments or advise is welcomed! Thanks

 

[Bobbi]

Not sure I posted this in the right location

 

[jyearta]

Hi Bobbi and welcome,

If you are not keeping a seizure diary, noting seizures date, triggers one being stress. I can not believe your Dr. said stress couldn't bring on a seizure. (if I got that right)
other triggers lack of sleep, infections, antibiotics, some foods.

We all react diff to diff. meds.

I think it is great that you will be seeing two diff. Neur.

Ask any and as many questions as you like.

The more you learn the better you will know how to handle E.

 

[Bobbi]

I have no recollection of the seizures I had - I blacked out totally, but I am trying to document in my diary some things if I notice anything unusual.
Thanks

 

[Bobbi]

I can not believe your Dr. said stress couldn't bring on a seizure.

She is not a seizure specialist and we didn't know this at the time.

 

[Nakamova]

Hi Bobbi --

It's good that you will be seeing a neurologist soon so you can figure out whether you need to stay on the medication. If staying on meds seems like a good idea, the neuro should be able to discuss different options/side effects.

I hope the seizure was a fluky one-off.

 

[jyearta]

I have no recollection of the seizures I had - I blacked out totally, but I am trying to document in my diary some things if I notice anything unusual.
Thanks

note anything that might help you and your Dr.

I'm 60 joined this forum over a year ago. I have learned more here than with any of the many Dr. I've seen.

My Neur told me that Vit. D, could've cause a seizure. I took him a copy of an article I had that stated that in fact it can causes seizure. this article was given to me by my Pharm. who I talked to a lot trying to find out what was happening.

 

[Bobbi]

Wow! I take Vit D! That's scary!

 

[jyearta]

I tried diff. brand each time I would have seizure. I would stop the Vit. the seizures stop. I thought that would be enough info. for my Neur. but no.

I have my Vit compounded, except for 1 or 2.

We all react diff. to the diff. meds.

 

[Bobbi]

My Neur told me that Vit. D, could've cause a seizure. I took him a copy of an article I had that stated that in fact it can causes seizure. this article was given to me by my Pharm. who I talked to a lot trying to find out what was happening.

Nakamova
I looked up vitamin D on the Internet and found that yes it can cause seizures except it would have to be a very large overdose. I was only taking about 1000 units a day which is half of what I was recommended to take last year. If you can email me the article on vitamin D and seizures private message me. Thank you

 

[Nakamova]

Actually, that was jyearta that experienced the Vitamin D-seizure problem.

 

[Bobbi]

sorry Nakamova

 

[Bobbi]

Update: Since my last post a lot has been happening....I did go for a 24 hour EEG where I am still having seizures that I cannot notice. I changed docs again to a local doc so I don't have to take a whole day off to go into Manhattan. They changed my keppra to time release and want me to increase the evening dose. I take 1500 mg 2x day now. They told me I have more activity at night so they recommended an additional 500 at night. I told them I am very tired from the keppra but the doc thought it was from me getting up at 4:40 am - I was doing this same routine before the seizure in December and I wasn't tired then. I hate when the docs reject the idea that something is a side effect! My WBC was also low and one of the docs said not from the meds - I asked her to prove it! They did take the blood and since Dec my WBC has decreased each month except the last month - I started drinking smoothies , added wheatgrass juice, vitamins including Vit D and try to walk a bit. I am not eating any meat during the week and I am looking into doing a cleanse. Has anyone out there tried any of this? My situation is different than most of the people I see on this forum where mine just started at 57 years old with status! My seizures are under control, I have no idea that I am having any of these mini-seizures - they said I even talk through them when they occurred. If I had a history of epilepsy since a child I could understand some more of what is on this forum but this has only started Dec 2012. I have not had any other episodes (thank God), I am reading more about balancing my ph and how disease cannot thrive in an acidic environment. I also take singulair for my asthma and I want to stop since seizures is a side effect! I notice when I take singulair I have tremors in my legs. There are other side effects but that's another post. I am weaning myself off of that and will see my primary doc for that a in few weeks as neuros don't discuss any other problems. I need a holistic doctor! One doc for all thinks! This is a good place to vent - thanks for listening.

 

[Nakamova]

I hate when the docs reject the idea that something is a side effect!

Me too! Lamictal gave me blurry vision. It's a known Lamictal side effect, and yet my neuro insisted it must be from diabetes (which I do not have and am not at risk for). I also have lower than normal WBC and RBC as a med side effect. I take B vitamins (particularly B12) to help.

My situation is different than most of the people I see on this forum where mine just started at 57 years old with status!

While many people develop seizures as a child (usually genetic epilepsy), epilepsy becomes more common as people age, and it is most common in the elderly. There can be multiple reasons for late-onset seizures, such as hormonal or metabolic changes.

I need a holistic doctor!

Abolutely -- it would be terrific if doctors looked at epilepsy from every angle, and considered multiple ways to reduce seizure control AND side effects. I hope you are able to get off the Singulair -- it can cause insomnia and non-epileptic tremors.

 

[Bobbi]

I hope you are able to get off the Singulair -- it can cause insomnia and non-epileptic tremors.

The singulair I am taking may have also caused a bleeding problem I had in 2005. It is also noted to have seizures as a very rare side effect. I am weaning myself off. When I do take it I get leg tremors at night. OY! too many chemicals in our system!
Thanks