Hello Fellow epileptics...

[patek8ks]

I am so grateful I stumbled across this site as this past week I have been searching aimlessly myself for an answer....I'm a 37 y/o who's had epilepsy for 20+ years which has caused a great deal of other medical issues...recently had my shoulder replaced. I am trying to find away to COPE with the pain of headaches and bodyaches after a seizure as I just experienced one exactly a week ago....I'm desperate...I need to try and control the other pain in order to try and heal my shoulder which is out of whack again...seeing my primary care as the neurologist I'm seeing now is worthless more concerned about playing mad scientist and doing brain surgery then treatment of the seizure and its effects after...I'm EXTREMELY depressed and desperate for an answer...
Thank you..
Patti

 

[cadsgj]

patek8ks, you living here in Regina The neurologist I first went to here in Regina about 10 years ago, he wasn't sure just where we should go... then he asks if I want to just quit the medication I was taking? "Excuse me?" Was my reply to him. I had heard from my prior neurologist (she opted to move to a new state) that the present medication I took, I could NOT quit those drugs overnight. My first neurologist here in Regina was telling me to go ahead and quit my drugs overnight. My reply was suggesting I should not quit the drugs as I only had my surgery 6 months prior. Well anyhow, I learned there was NOT a neurologist in Regina who was better so I had to talk to my doctor about where I could go... He sent me 3 hours away to Saskatoon and my neurologist there is soooooooo different. Anyway, talk to your doctor and ask if knows another neurologist you could go to.

The head aches, I have been having regular serious headaches since my last brain surgery and have had my neurologist get me the right drug for the real bad times. Semi bad headaches I double (per neurologists suggestion) the right pain killer one can go buy without needed prescription, and the not so bad headaches, I merely just live with it. Anyhow, if I were you I would first find an ok to great neurologist.

While I was kidding about you being here in Regina, you really should ind a better neurologist. Starting the seizure life in Los Angeles California, I have moved four times and twice found it necessary to find a good neurologist, or at least a better one - both times I was very lucky and found a good neurologist.

Too late for me to go back through this to see if I have bad typing errors... Hope I could share a bit of my seizure life here to get a couple thoughts for you to pop in your mind and think of...

 

[Meetz1064]

Helloooo, good morning

and how do ya do.........

Sorry if I seem chipper today, I'm not, just trying cheer meself and others up.

First off, a doc that is more interested in tests & surgeries right off the bat is a nit-wit. Find another. Doctor shopping, though a pain in the backside, is sometimes necessary. Doctors, particularly neuros, should be willing to understand everything there is about you and what's going on--that includes changing meds (SLOWLY), using different specific diets (ketogenic, Modified Atkins, etc) to help control the seizures, using seizure diaries and blood levels on a semi-regular basis, especially when meds are being change.

IF a doc is not willing to do those things, they are NOT worth having. PERIOD. :soap: Sorry, I'll get off my soap box now. op:

Ahhhhhhh, the pain....hate that after-effect crap. Keep in mind that even though I have been in total control of my seizures for more than 10 years now, I STILL suffer side-effects. I've done damage to my back from some of the last ones that I did have, so it is an on-going (almost) daily battle for me.

For me, personally, it has been a matter of rest, heat, ibuprofen & Tylenol (alternatively) or something stronger if the doc was so kind at the time, and slow, gentle stretches. Oh, and gentle massaging. Not directly on the places that were hurting, but nearby. The idea of not doing the massage (for me) directly on the place was that it sent me nerves well into overdrive, and flat onto the floor with a writing migraine. Working from the edges in, gently, with time and heat, got it out eventually.

Over the nearly 50 years that I've been alive (and had E the entire time) I've grown to have a pretty high pain tolerance. And I've learned my personal tricks (I've added using a friends jacuzzi in to the list on occasion to help out badly wrenched muscles).

One other thing that I've started using over the last 10 years or so, and though it may be hard to wrap your mind around at the moment, it does help. YOGA. And stretching.

Hopefully some of that helps. :bigmouth:


Oh, and by the way, I haven't said welcome to CWE. Mr. B has made a fabulous home here. Just like a dinner party--but I burn coffee, so I'll give ya some other type of drink if ya want it.

Put your feet up, relax, and enjoy!

Cheers!

Meetz
:rock:

 

[patek8ks]

Thank you both for the input!! =0) I've been living on the ibuprofen wagon for sometime but worry bout my liver =0/
And I did have a quack of a neurologists a few yrs ago that took me OFF MY meds for 6 months stating a. He wanted to see HOW many seizures I would have B. Wanted one of my family or friends to VIDEOTAPE one with their phone (which none of them did they thought it was propostirous!) C.His reasoning was I DONT DRIVE so he can carry out his experiment .....After about 12 seizures some landing me in an er (which always peeves me) cuz I hit my head...I told him ENOUGH IS ENOUGH I WANT MY MEDS BACK! That wack was FIRED and surprisingly doesn't work for the Hospital System I work for and belong to!!!
Im very grateful I stumbled across this site!! Thank you again!!

 

[Nakamova]

I've been living on the ibuprofen wagon for sometime but worry bout my liver

Just make sure you try and limit the number of days you take it, and don't exceed the recommended daily dose...

I've messed up my shoulder quite a bit due to seizures, so I really do feel your pain. If you think something has torn or been re-damaged, you should ask to get X-rays or an MRA to gauge how bad the damage is. In the meantime your doc may be able to prescribe a small rX of something like percocet to help you sleep and to help the shoulder recover.

Wish there was something you could take to help with the pain of having a lousy doc.

 

[valeriedl]

I can't even imagine going off of my meds!!!! I'm still have seizures being on meds and I know if I were to stop taking my meds I'd probably end up in the ER after each one of them. They might even give me my own room in the hospital because I'd end up there so often!

I have a problem with pain meds - over the counter and pescription. After a good bit of my seizures I'll have horrible headaches. I've taken all sorts of meds, even ones specifically for migraines, but none of them did a thing. They didn't even lessen the pain. I'll just put an ice pack on my head with a pillow over my face in a dark quiet room until it goes away, wich may take hours. I'll usually fall asleep while I'm laying there. Sometimes when I wake up the headache is gone other times it's still there.

I had horrible back pain for years, probably at least 5 if not more. I had gone to several different drs given severl different tests and 'There was nothing wrong'. So they would just give me pain meds (which did nothing) and was sent home. I would put a heat pack on that which helped sometimes but not often.

I went to a dr at the begining of this year and he did an x-ray. He told me that I had a herniated disc which has been there for a long time and has just gotten worse over the years. He said that it should have been showed up on the tests that I was given too. I ended up getting back surgery and haven't had a problem with it since.

He did tell me that because of having epilepsy if I were to have a seizure while he was operating on my spine it could cause major problems, possibly not being able to walk, but he wasn't afraid to do the surgery. I think all the other drs didn't want to deal with operating on me because of having epilepsy.

The dr that I had for this was young and new to the area so I think he understood more about what was going on. I'd try looking for a dr that deals with treating the areas in your body that are hurting and not just getting your primary care for help. Don't just go to a 'pill dr' either, these are ones that just pescribe you meds to help you, this can be A LOT worse than it is good!