What you Cant and Can do with no seizure control

[vapour]

Id like to know what you can and cant do.

I think Ill start off posative despite my current situation and almost calling 911 today. Later.. when the klonopin has worn off (the 2 and a half pills I had to take of it becuase the seizures wouldnt stop) if it happens again.. I will.

So Im bored and decided to write a list. Ill start of posative.. so the things I CAN do with no seizure control.

*Follow my doctors directions
*dont let it destroy who I am as a person
*reach out... EX here well.. actually thats something i cant do, but I am in 5 minute intervals lol
*rest


THe things I cannot do, which happens to be alot.. mine are set off my all kinds of stimulation

*No problem solving ex checking my bank
*no video games ((( thats a hard one.. unless I have nausea then I dont want to lol
*No tv
*no being anywhere with too much noise, or multiplie conversaions, flurescent lights (that just about wipes out going anywhere)
*read
*Be on the PC,,but screw that lol ill do 5 minute intervals i neeeeeeed people who understtttttttttttand


So, you can realy feel a prisoner in your own body it sucks. Hopefully im gonna get seizure control again soon...that would be suchhhhhh a relief.

THOUGH even with great seizure control .. the above still have to be monitored.. but I can just about do the things a normal human can.

Let me know about you guys. ! I will probably think of more

 

[RobinN]

I really am worried about you
I was looking at your info, and as a mom, I would be asking the doctor why you are on two meds at such a high dose, when you were only diagnosed this year. Usually they do one at a time = monotherapy. This actually is what is recommended in the medical journals. I could very easily be that your seizures are happening so frequently due to the meds. All your symptoms could be from the meds (or not). But if that were happening to my daughter... this would not be acceptable.

You are a prisoner in your body. You must be proactive.
Where is your neurologist located?

 

[Crystal11]

When I first started out, my neurologist did Tegretol XR, slowly increased it, then decided to add on Keppra then changed it to Keppra XR but still increased it slowly. I'm max'd out on Keppra- but its working pretty well. Makes me sleepy.
I definitly would talk to your neurologist and ask what specific epilepsy you have.
What changes could be made to the medication you are on. Some people have more seizures due to med increases. (I had more seizures taking 700mg of Tegretol XR and 3000mg Keppra XR- so we changed it back down to 600mg Tegretol XR which helped.)
And ask about ways to reduce the triggers or maybe some way to avoid them without being stuck to your home or being trapped within yourself.
Sounds like you have it pretty bad- I hope things get setteled soon. Maybe you can suggest or ask about an epilepsy clinic that has more specialist, testing and equipment and training in difficult cases.

Please take care,
Crystal

 

[Nakamova]

It does sound like medication issues aren't being addressed. Whenever there's limited seizure control, and large doses of meds, it's time to re-evaluate...

I hope you can get out and go for a walk in nature from time to time -- no fluorescent lights, not much noise, few people. If you can find an isolated patch of beach, or a park, it can be a safe and restorative spot away from home.

 

[vapour]

I am on 600mg of tegretol a day and Neurontin. My Neurologist is in Irvine. I withdrew lamictal myself a short while ago as I thought generic was not doing me any good.. i still believe that but she wants me to go back back on the lamictal...so I will be starting that at a low dose.


I cannot afford to see her until next week. To be honest, I really do believe its the generics...and Neurologists are aware of that but I think its still hard getting it through.

Now Im discouraged. Originally monotherapy was given .. (lamictal) with my current neuro with no luck and I vaugly remembered being on both lamictal and neurontin for a breif period with good luck before seeing her which is why that is there she let me go on that...

well the whole situation is a mess, and I have not totally followed my Doctors instructions...ad she has been pretty mad the other day when I spoke to her...she doesnt think the Neurontin should be there, asked if it helped with my mood... I really dont know...

Maybe I should only have 1 doctor also, and forget the psychiatrist because that also seems to be complicating things... them wanting to put me on more meds

 

[vapour]

I have been questioning also if the seizures are from the meds also, and going through the last 3 years of my life being on anti-seizure medication trying to think (I was originally given lamictal for Bipolar 3 years ago)

BUT i had seizures when I came off seizure meds over a year ago....infact.. thats when I finally started thinking about seeing a neuro which my psych had been trying to get me to see for a while.

BUT i question whether seizure medications have caused epilepsy. Maybe when I see her we could come off everything

 

[vapour]

It was the psychiatrist who prescribed tegretol, and I took it, because I was not on lamictal and I was hoping it would do just as good. When i take brand name lamictal .. everything is fine..... but I cannot afford that. So I was hoping and praying tegretol would work. The Neurologist is mad I came off lamictal and started another med when the doctor did not even speak with her...it was pretty bad, and I feel like **** for doing that. Now I dont know what to do. When I see her i will have to talk about monotherapy.

 

[Nakamova]

Unfortunately, coming off of seizure meds can cause seizures. The tapering has to be done verrrryy slowly. It sounds like there are too many factors going on right now to be sure what's causing what. It's a good idea to make sure your neurologist and psychiatrist talk to each other, and are aware of how medication costs limit your options. This is a big deal -- many neuros just assume everything is covered by insurance and blithely write out the RX. (This happened to me when I went to pick up my first prescription of Lamictal. It cost me $1000 for one month's supply!!!! I had to change my insurance. More expensive for me, but still cheaper than paying $1000/mo.)

Your docs need to have the big picture.

 

[vapour]

Yeah, i know. And I was doing great on lamictal alone when it was brand name so it really sucks.

I got into UCLA psych here, but they are not calling her, however i think they did yesterday..which is good.

I got a prescription again for the lamictal (generic) which i have not yet started as I am waiting for it to be delivered here....and my psych has given me one direction for it (as it has been used for my mood as well as seizures) and she (the neuro) has given me another.

I told her I will be following her directions with the lamictal and I know they spoke yesterday so I will call the psych today to see if he did get her directions.... this is the issue I was speaking about in my other post (well part of the issue with a dual diagnosis.. especially a psych one where meds are used for both)

To me right now its more important to have seizure control and a neuro...but when for example I switched to generic lamictal and things started to go wrong I was **** scared and tahts when I started taking things into my own hands more than I should...and it was a mistake.

Now its almost back to square one agagin. Its just when my seizures get out of control I so badly want to get back normal agai I start trying things myself.

I will have ot look into ways of getting brand name lamictal. I looked online but its still expensive. Brand name tegretol is cheaper.

Things seem to be ok so far this morning but too early to tell, the longer the day goes on as im around more and more.. it starts... but hopefully today will be better.

If I have the same experience as I did yesterday, I am basically going to call 9/11...my neurologist has told me to do this in the past but Im so hesitatnt to do so....i know if I go in my paramedics I wont be sat in the waiting room in the simple partial or complex partial seizures.

Things seemed relavitvly simple until as of late. I am pretty mad with myself actually. I should have just followed hte neurologists insturctions all along and not tried to take control myself....I feel like crud.

 

[Nakamova]

It's hard not to want to take things into your own hands, especially when you're getting mixed messages from your docs, and trying to find something affordable. This is one of the major flaws of our health system (not that I know how to fix it). You shouldn't have to choose between the right drug, and the right price. The right drug should be covered. period.

 

[vapour]

Neuro is trying to get me in UCLA with Neurology as well as psych then it will all be under one roof. I however love my neurologist she has been great.. right now it will take 6 months before i would be seen with Neuro there....I think she is going ot try pull some strings... :/ in the meantime I will continue with her....I know it would be beneficial if it was all under one roof....but man .. epilepsy really sucks... Sunday was a terrible day...