I need new medicine

[carlasmoore]

I have had epilepsy for over 25 years and have been controlled by minimal doses of Tegretol per day. I have only been taking 200mg per day until lately and now I'm up to 400 per day as I have been experiencing more night seizures....My epilepsy is due to sleep deprivation and stress..Tegretol is sooo expensive...Should I try a new medicine or be happy with the cost associated with having my seizures controlled?

 

[epileric]

IMO if it is working then it's worth it. It can take a long time to find what med works & even longer to find a 2nd one that works.

I would say try to find a way to get more sleep & control your stress levels. Remember the less your sleep & stress are under control the harder it would be to find a medication that works.

 

[matchu]

you have to ween off and step up new dosages and this can be an interesting ride.

 

[hawke86]

Matchu,
What do you mean mostly in your head?

 

[matchu]

just a play on words as though I live with the thoughts in my head. I am always told that I am thinking too much.

 

[carlasmoore]

I now feel lucky

After reviewing much of this website I feel I am more lucky than most, as I have controlled seizures. My heart goes out to everyone who has uncontrolled seizures as I struggle to make my daily life schedule when I have partial seizures. Thank you to everyone for the advise and keep it coming. I welcome and enjoy speaking with others here. Take care, everyone Carla S Moore:clap:

 

[Crazy Monkey]

:agree: with Eric

If your seizures are controlled then you should stick with your current meds, it might take several trials before you strike lucky again.

 

[carlasmoore]

I now only get partial seizures if my medicine is too low. I can always tell when I need to increase my meds. I get depressed about being medicated all of my life and try to stop the meds, that's what gets me in trouble and I end up having the seizures again. I guess it's almost selfish. I have doubled my Tegretol and plan on ading another 200mg at night. Take care and thanks!

 

[epileric]

You shouldn't be playing with your dosage without your neurologists instructions.

When you say you doubled your dosage I hope you mean you gradually increased it & not just doubled it at once.

 

[carlasmoore]

Thank you for the concern. I have had epilepsy over 25 years and did not automatically double the dose. We have moved to a new area in last 9 months and I have not seen a neurologist in over 20 years. I'm on Tegretol and have been paying attention to what triggers my seizures (lack of sleep, stress, etc.). I was on 200mg per day for many years, but in the last 4 years I have had to increase to 400mg per day. I now need to increase again due to the partial seizures. Again, thank you for your concern

 

[matchu]

I am no Dr.

but I am a patient. lol

 

[Meetz1064]

It's good

that you didn't double the dosage on your own, as that can be dangerous. Just make sure that you keep in contact with your neuro on a regular basis, and have blood tests every so often. If he/she thinks you need to up the meds based on that, they will tell you.

Most neuros shoot for monotherapy (one med) which is what you are on, and that is a good thing, so count yourself lucky.

Take care,

Meetz
:rock:

 

[carlasmoore]

Hi everyone,
My seizures were under control until this afternoon at 2:40pm. Then I felt that feeling again and here they come. Since 2:40 I've had 3 partial seizures. I get so scared and I hate the night time. I'm terrified of the dark and dread tonight because if I go to sleep I'll go in to a grand mal seizure. I took another Tegretol at 2:40pm, right after the partial seizure. I'm hoping the medicine will get in my system good enough so I can sleep tonight.. Take care, everyone

 

[matchu]

I am up way into the long hours, feel free to contact me if you need to talk. Someone understanding can help calm your anxiety, if you get worked up indeed worked up you will get. We all figure this out at some point. Nightime for me is scary too, if I can't fall asleep I jerk around, then know what is going to happen. I hate to wake someone up, just to watch over me,when they work in the morning. So I am hear, we can get through the night together. I also take lorazepam for anxiety and to sleep if need be. E's have to have sleep and little to no stress. You triggers are very low at this point.

Maybe you can join the creative writing page and share if you can't sleep. This is my creative time. The worlds sleeps and I just love the weee hours going outside.

 

[carlasmoore]

Matchu,
Thank you so much for your concern. I hate the nights and darkness. Even with my husband here, I still get scared. My husband says he's not afraid of the dark, but what's in the dark. I'm just paranoid in the dark. I usually sleep in the living room where my husband is on the computer all night so I don't have to be alone. I leave for work at 5am and usually get to sleep around 2-3am. I'm horrible at sleep, but I've always had a problem with sleeping. I remember having auras as far back as when I was 3 years old. I've always been scared. I look forward to being in Heaven where I will have no fears. Usually before I have a seizure I awake long enough so I can yell Allan's name and he'll talk to me until I'm calm. Thank you for the shoulder, if I need it. I'm usually here from about 7pm eastern until midnight, if you need to talk with me also. Take care and thanks again!

 

[matchu]

That is so great you have Allan, and can have him near you while sleeping. I am single living with my brother. I have a couch in my room next to my bed, I always am asking him to stay with me.... I can not wait until I can have my woman there for me, sometimes I just yearn for the touch, telling me it is ok. Mommy's boy syndrome i suppose. What times are you taking your meds if and what do you take if you don't mind? I adjusted my times with doctors approval and I take most of my Keppra xr at night so I do have trouble sleeping I get most of the side effects at this time. I also have lorazepam they give this in the emergency room for seizures. I am noticing I am having more at night, so i try to stay up until I fall out. I dont work, so I am available to do this. You think you could have your hours changed?

anyway, I butted in your affairs enough!
here's is to being alone in your illness, and God is always with you and I.

 

[carlasmoore]

Hi Matchu,
Yes, I am glad to have Allan around. My son and daughter had been responsible for me when I had a seizure until lately. My husband is disabled and here all the time to help me. It is a blessing to have him in my life.

I take 400mg Tegretol about 6am each day and 200mg at night. I have been on Tegretol since 1985 and was down to taking 200mg per day for about 20 years (the dr.s said I had an amazingly high threshold for an epileptic). In the last few years I have had to increase the dosage. I have seizures due to stress and sleep deprivation. But it's hard to avoid seizures it you can't get to sleep! I also have sleep apnea so I can't take sleeping pills because it makes my beathing stop. details...details....details....sorry to bore you. take care

 

[matchu]

I am convinced that seizures have other disorders along with them. That or the medicine causes them.

 

[alan777]

Tegretol is sooo expensive...Should I try a new medicine or be happy with the cost associated with having my seizures controlled?

I used to have issues with the cost of my Tegretol as I do not have health care and have not had it for years. But then I discovered this on-line Canadian Pharmacy by way of my sister. I just thought this might help with the cost factor. I pay $15 for 100/100 MG tablets. PM me if you want the link to the Pharmacy as it seems links are not allowed here for safety reasons.