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Henryc

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Hi there I have just joined. I'm 57 now but my relationship with Epilepsy goes back a long way. I think it was always in me, as a kid I was always blanking out. Began the Grand Mals in my 20s. Reached my early 30s and 200 mgs of Phenytoin brought it under control. For 20 plus years only the odd twinge despite some stressful times. Hell one or two days I even forgot to take the meds. Epilepsy though has a nasty habit of catching you out. Late in 2016 out of the blue I had a grand mal (I had forgotten to take the meds). Neuro raised the Phenytoin to 225mgs. Latter half of 2017 succession of intense partials where I would get an intense aura and be frozen unable to move or communicate. Two further grand mals in September and just before Christmas. In your 20s you bounce back quicker than in your late 50s. Anyway at the moment going through a medication change programme from Phenytoin to Lamotrigine. Finding it hard going every 2 weeks the Lamotrigine goes up 25mgs which knocks you about for a few days then a good week and then the next rise. Due to reach 200mgs on Monday (300mgs the eventual target)the week after they begin to drop the Phenytoin 50mgs a fortnight. Have Clobazam to use as and when. Feel a bit like a drug lab and forget how much Epilepsy can hit you mentally. Anyway looking forward to talking to you guys. There was no internet when I was first diagnosed.
 
Hi Henryc,

Welcome to CWE! Everyone here has been a great help to me and I've had seizures for 46 yrs. I have absence, complex partial and simple partial (aura) seizures.
Have you ever noticed that you have more seizures at certain times of the yr.? If you do you may be having what they call 'seasonal seizures" I always have more in the fall and winter do to the lack of serotonin in the fall and winter compared to the spring and summer. I've tried so many seizures meds I finally had a dna test done and found out I was drug resistant to all seizure meds out on the market right now.
I really noticed a change in my seizures when I went through my change and I was told by my Epileptologist that in some cases when a person goes through their change the seizures can either decrease or increase. Mine increased until I started using medical marijuana (cbd oil) I get it in a mouth spray and squirt it in my mouth twice a day and it has done wonders for me. If you are interested in that check out healthyhempoil.com the company is great and you can get your money back if you don't like how it works. I wish you the best of luck and May God Bless You!

Sue
 
Thanks Sue. The last few ones have taken place in autumn / winter but the ones earlier its hard to remember. Thanks for the tip about the oil. For years Phenytoin worked for me but maybe i got tolerant to it. Because of the way Lamotrigine & Phenytoin work until it reaches 200mgs won't know if it works or not.
 
Howdy Henryc, welcome!

I started out on phenytoin, but am now on lamotrigine with out any major issues. I hope that it does the trick for you.

Cheers!
Nakamova
 
Thank you

Thanks Nakamova always a bit nerve wracking but good to know. Had major issues with my gums on Phenytoin so hoping i might be able to preserve my remaining teeth☺

Henryc
 
Yes, gum overgrowth was one reason I switched off of the phenytoin. That, and the potential for other long-term side effects.
 
My Neuro called it an old dirty drug. I guess i developed tolerane to it because for 20+ years it worked.
 
Thanks always hit and miss with different drugs. So far so good but it will take a while to get self belief
 
Hi, & welcome! I've had simple partial seizures since childhood, but they weren't diagnosed until after I had some tonic clonics when I was a teen. Now I have complex partials, too--those began about 18 years ago.
I took Dilantin/Phenytoin for over 20 years. My doctor took me off of it since it can cause osteoporosis. I was also having a lot of breakthroughs while on it. I've been on just about every AED out there. Right now, I'm on 3 (trying to drop 1), & still get breakthroughs!
 
Hi sorry to hear about the breakthroughs. Phenytoin wrecked my teeth. Lamotrigine so far so good but early days. Hang in there
 
Hey-
Like you I was a long term user but my drug of choice was phenobarbitol. I think it made me sleep hard and that's how it worked. The other side effects were manageable. Then a few years ago my blood test got borderline for RBC and WBC etc. Got referred to a hemotologist a couple of years ago. Scared me, so I got a Neuro to switch me to lamotigine but I tried to stay at low dose, about 50mg per day. When she prodded me to get dosage up because of an occasional seizure, I got a facial rash and other things.

Last Sept, I decided to try Keto diet instead. Gradually weaned myself off the L. Watch out for seizures...
Rash etc cleared right up. It did not straighten out the blood counts but on the diet I felt more alert, etc. Neuro considers me "untreated--does not like it. I think I have about the same control as on the lamotigine. Of course Keto is a high fat low carb diet so cholesterol numbers went way up--both LDL and HDL. So long term side effects od this diet might be about the same as drugs, dunno. Im now trying to limit the animal fats of the diet but its a lot easier to use cream, butter, sausage to meet keo fat reqts.

Anyway, read up on the side effects of lamotrigine and watch out. The rash, if you get it, can lead to death in some cases.

Seems like all the drugs (and the diets( have side effects. F...g epilepsy...

Cheers.
 
I've been on just about every AED out there. The first I took was Tegretol, after some Tonic Clonics, to which I had a SEVERE allergic reaction. I'd been having Simple Partials since I was little, but nobody had recognized them. Then I took Phenobarbital, and later Primidone/Mysoline. My neurologist then put me on Dilantin. He added Neurontin, but even that didn't stop breakthroughs, so we dropped it.
When I started having Complex Partials about 18 years ago, I tried everything available. I'm allergic to Keppra, Depakote, & Lamictil. I started taking Topamax in addition to the Dilantin. About 5 years ago I began Vimpat in place of the Dilantin. Thanks to changes in insurance, I've had to change meds again. Now I'm on Zonisamide with the Topamax. I still average 1-3 Complex Partial seizures /month.
 
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Hello, welcome!

My drugs are in my sig. Been through various cocktails the past two years and finally stable! Keppra, vimpat, lamictal all wasted.
 
I wont even ask about the side effects to you of the failed or successful drugs... Seems like we are doomed to those from whichever one(s) work.....
 
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