Curious about medication

[Blessed]

I would like to hear about some of your experiences with a medication(s) that used to work for you and then all of a sudden did not. I have not talked to any neuro who has been able to explain this to me. One day you wake up and you realize your meds have stopped working for you. Or maybe one day you develop very strange, intolerable side effects that you have never experienced and have to stop the meds.

I know our bodies change but it is still a very strange phenomenon. (sp?)

Has anyone experienced this?

 

[POSITIVEPERSON]

It has happened to me. My body was exhusted from mysoline, the Drs said I was on it too long,should had have a change sooner than I did. They did the change it was too fast, I ended up in absence status, and than my body didn't accept any of my old meds, zarontion , or tegretol . I tried every med available in Canada (was living there at the time) It began a search for control of my szs , I was so desperate I returned to NYC & went into the felbemate expirment . Couldn't take the full dose of that either,but I did improve. Than went off that once it became legal and the deaths. Just went from one med to the next ,nothing worked . Finally went back on mysoline and had control ?????
Not for long a few months ,than my body was tired needed an add on.
Ended up getting the vns inplant , that worked great for me, but the dr wanted me off my meds , I was his prize patient. Ended up off the meds and having a violent grand mal in the bathroom. Broke the wires and lost my trust in the Dr. ended up on
keppra, couldn't take full dose ,med made me crazy . Ended up with sz once a month.
Until 2 yrs later tried the mysoline and tegretol again. This time I got this life threatening rash from tegretol. Retried lamictol ,got a rash. Desperate went to homeopathy Dr . been weaning off meds since. I never accepted the diagnosis of irratractable epilepsy. I had control for 24 yrs I was getting it back!!

I look back on the pictures of me in 80's early 90's with the knoweledge I have from the internet ,and I can see the signs that my body was tired of mysoline and I needed a change, very thin, hair super thin, couldn't sleep at nite,irratable. The signs were there,but there wasn't a internet or support like their is today.

Those Drs in Canada like to say their are no side effects. Like give me a break !!!!
I know better !!!!!!! I have had epilepsy since I am 11 yrs old I am now 51 yrs old.
When they were caring for me I was in my 20's ,30's, 40's . Their saying my life experience amounts to nothing.

Riva

 

[brain]

I would like to hear about some of your experiences with a medication(s) that used to work for you and then all of a sudden did not. I have not talked to any neuro who has been able to explain this to me. One day you wake up and you realize your meds have stopped working for you. Or maybe one day you develop very strange, intolerable side effects that you have never experienced and have to stop the meds.

I know our bodies change but it is still a very strange phenomenon. (sp?)

Has anyone experienced this?

Affirmative:

Phenobarbital & Keppra gave me the most strangest
side effects of all the anti-epileptic medications
out there.

PHENOBARBITAL: at first for a long time - had no effect
on me whatsoever, but for some reason, after being
pregnant and not having been on it for awhile, then
being put back on it again; it made me the most
nastiest person on earth (worst than 10 women with
PMS x 100), mean, into a state of psychosis, and
I would chew anyone's head off - and that was just
on a LOW DOSAGE! So the Neuro decided to RAISE
the dosage (big mistake), and I ended up hurling
objects across the room, and fighting people, and
it was triggering seizures, and I was going berserk!

KEPPRA: (last year) the Epi titrated me on this very
slowly, so slow that it would have put you to sleep.
While some of y'all would have laughed at how I was
started on it and would have stated "gimme a break"
but things went well, and once at 1500 mg (750 mg
x 2), it was perfect. But the Epi didn't want to stop
there, he wanted to continue to raise it. And by the
time I was at 2000 mg - I was experiencing all kinds
of weird things, more auras, and the stupid tiny blue
light that would flash in a nano-second with numbness
in my hands and feet after an hour of taking it (1000
mg x 2) and I would feel my cardiac system going
absolutely haywire, into S-Tach, then drop. Then he
raised it up to 3000 mg (1500 mg x 2) and it put me
into state of pure psychosis. I was completely whacked
out. I had no desires to be in competition with Whacko
Jacko (Michael Jackson), and I didn't know if I was
coming or going, and I was hallucinating and seeing
things that weren't there. And I felt myself like I was
departing in all different directions. And the most odd
ball thing was - I SAW SHOOTING STARS!
ZOOOOOOOOOOOOOOOOOOOMING across my eyes!
It startled me. I thought "Oh my gosh, I've lost my
mind!" And it did it again. And it was freaking me out.
And it did it again. All different directions. And I told
myself, if it does it one more time, I'm emailing my Epi
to have me committed. And :::: whoosh :::: another
one went by - and I said, "Alright, that's it!" I hit sent
on the email! But I never experienced any more after
that. I waited, and waited - while it was cool, but in
broad daylight? I mean shooting stars or falling stars
is something you see outside at night time in the sky
not inside of your eyes. Night-time was no better.
For some weird reason in the middle of my sleep, it
would wake me up, and I would be extremely ANGRY!
WHY? I have absolutely no idea. 3-4 AM after being
in bed at 10-10:30 PM. Then I would be in tears. At
one point, my tenant made a comment that I once
rose up like a corpse, like a zombie, and then collapsed
and was limp, and he had to reposition me.

My Epi at that time had to take me off of Keppra
immediately.

Those are the only two medications I had very, very
strange and odd effects.

 

[Bernard]

If you do experience side effects from any AEDs, you can report them to the FDA. The more people who do this will increase the likelyhood that the side effects will be included in warnings for the drugs (if enough people report the same problem).

 

[Birdbomb]

Topamax caused severe eye pain for me. I had reported it to the company as well. They responded back that they had sent warnings out to over 500,000 neurologists but yet my neuro denied any knowlege. This side effect is in their warnings as well as causing blindness and glaucoma. I only came across the warning by accident and put 2+2 together. That eye pain was so bad I went to the eye doc who could find nothing wrong. When the medication was stoped the pain abated.

 

[POSITIVEPERSON]

Wow Donna, I was doubled over from topamax .
Bernard I never thought of contacting the FDA about the mysoline collecting in my joints,
it only happens to 5% of the pple who take it.
Brain ,I could never get past 1000mgs of keppra I would get parnoid and cry
zarontion stopped working for me in 1992 when I tried to go back on it and I went toxic,
my gums bled , it was horrible I needed a gum operation.
It was like the Drs weren't listening they kept thinking give me more meds,that will stablize her,instead it made me sickier and thinner . Down to 90lbs
2004-2005 tried tegretol and mysoline again and got life threatening rash to tegretol

PILLS CONTROL THE SZS BUT KILL THE BODY

Thats another discussion, I got epilepsy when I was 11 yrs old and I was taught to take my meds and my szs would be controled. No one ever discussed long term use of these meds and the damages ?

Left with no choice but to try homeopathy

 

[Blessed]

Thank you everyone. I am sorry you have been through so much. It makes me sad to read your posts

Our bodies are truly amazing machines.:clap: When we begin to have strange reactions I think it is our body's way of telling us "we don't want that stuff anymore." I still find it amazing that a medication can quit working seemingly overnight after being on it for years. (Thanks for that link Bernard.)

I have always heard we should listen to our bodies. It seems to know what it needs when the docs. don't.

 

[brain]

Thank you everyone. I am sorry you have been through so much. It makes me sad to read your posts

I have always heard we should listen to our bodies. It seems to know what it needs when the docs. don't.

I think Bernard made a comment on your last line
somewhere over the rainbow in some forum to
someone - I might be wrong ...

BUT I ASSURE YOU - There are Doctors WHO DO
LISTEN!

I had 2 Neurologists who listened to me, and I have
a PCP and a Cardiologist who listens to me.

I also have dear close friends who are Medical
Doctors, Surgeons, Nurses and also Medical Retirees
who listens - and not to mention Medical Professors
as well.

They listen, and they even give me advisories.
I've been there for them, and they've been there for
me.

 

[POSITIVEPERSON]

Wow you sure are lucky ,haven't had any luck with drs in years .


Riva

 

[Bernard]

I think Bernard made a comment on your last line
somewhere over the rainbow in some forum to
someone - I might be wrong ...

Nope.

 

[Stacy]

As far as I go, I've had Epilepsy since I was 12 years old. My mother had it and her grandmother, all the way back to Martha Custis Washington wife of George (so they tell me). I started with petite mal seizures and never had grand mal until I got pregnant. After the babies, I started having the sets, as my horemones raged. Just after I met Bernie, I went seizure free for 4 years with no medications.

After the first set of grand mal seizures, my doctor put me on all kinds of different medicatiions, some of which I've forgotten, but I've pretty much tried everything as far as pills go. The next March, 06, I was in my Graduate level Environmental CHemistry class. I had to explain to the professor I couldn't even write without looking like someone with severe Parkinsonism. My short term memory was no better than a goldfish (3 seconds ) I spoke with the head of the department, who also happens to actually have been a professor of mine for several of my undergrad classes and knew what I am capeable of. I explained the situation and in the middle of the conversation I couldn't complete a sentence. I asked for a pencil and proved it. I also talked to the Chem. professor who is from China and told me it would not be fair to treat me differently than the other students. Keep in mind, my collegues have backgrounds in partial differential equations, chemical imbalances for bombs, and the like. I was only asking to take an open book final exam. We had all these complicated mathmatical equations, and I couldn't even remember what 10 to the 3rd power was, from algebra. It ended up that I studied REALLY hard and my fellow students really helped me relearn all the math again(except the one chick from TAMU that consistently rolled her eyes at me and told everyone I was faking). Dr. Chan (professor) let me do an extra chapter critique of the book he is writing to help with my grade. I somehow ended up with a B, but I'm not sure I deserved it. I had a set of seizures while I was enrolled in the class at some point, and the neuro just said, "...up her Dilantin levels!" That made things worse! I was then on 400mg Dilantin and some other medication that made me really messed up. Bernie was very patient and swore up and down I should not finish my degree. (I only had my thesis after the Chemistry class, then I would be done.) He said it wasn't worth it. I'm here to tell you, it was worth it. I'm glad I'm done and I'm glad I did it. I'm proud of myself.

honestly though, the meds help, but the hormones keep me sane.

Love, stace

 

[Mari]

Medication

I am uncertain as to whether I am in the right area, sorry. I have been on every drug that has been used for epilepsy and the only one that works for me, or did work for me, is Lamictal. Unfortunately I had a seizure last week while on the medication and have an appointment with the GP this Friday. I expect that my dose will be increased...sigh. I was without benefits for more than a decade, this drug is very expensive, and I am unable to take the generic which left me with nothing. Fear reigned supreme.
No one listened to me re. the epilepsy. Vague symptoms. No surprise there. I have no memory of the events taking place during a seizure, all I knew about were the bruises. Always in the same place on my legs. Try asking a doctor how the bruising comes about: oh you must be walking into something at home, try moving the furniture. Duh...one thing I knew for sure it had nothing to do with the furniture. They just materialized. Broken bones, dislocations, bruising. I had no idea what was happening, and neither did anyone else. The only eeg that ever showed anything was in the seventies. Now I suffer from complex PTSD. I am sick of seeing people misdiagnosed. In me it is definitely familial. I have a niece and a grandson with epilepsy, and both of my sons were diagnosed when children. My greatest concern now is for my youngest son. I have seen him have two siezures from start to finish and no one is paying attention. I am terrified that he will go through what I have gone through. Indeed I am far more afraid for him than I am for myself. We NEED a petition demanding that funding be provided to produce a stable and definitive test for the diagnosis of epilepsy. We must PUSH for changes to be made. No one should have to fear medical professionals, and no one should be left traumatized and terrified of having a seizure. But I am.

 

[Nakamova]

Funding be provided to produce a stable and definitive test for the diagnosis of epilepsy.

I agree that such a test would fantastic. But I doubt it will happen any time soon -- in part because most funding is focused on treatments and cures. And in part because epilepsy takes so many different forms and can overlap or mimic other brain disorders. SI do think that there need to be more epilepsy specialists, and better-trained ones. That would go a long way towards improving diagnosis.

There are genetic tests that can indicate some kinds of epilepsy, and that might be the case for you and your son -- maybe you can push for that? And if you have a smartphone, perhaps you or someone else can film your son's seizure, so there is visual evidence to help with diagnosis.

I'm so sorry that your path to treatment has been arduous, and that the treatment is still problematic. Unfortunately this remains the case for many CWE members. I hope you are on the way to finding peace for your PTSD.

:hugs:

 

[Mari]

No peace from the complex PTSD, meaning a situation that is repeated over years, not a single event. No hope there Nakamova. As for the 'funding on treatments and cures', not a chance..pharmaceutical companies make billions of dollars selling their drugs, have no desire for a cure or a diagnostic test. They would lose too much money. Whenever you do research into a company you must follow the money. The answers will come. Be aware though that much of it will sicken you, and do NOT used magazines, periodicals or newspapers for your information.

 

[Sabbo]

I often say that I feel like any AED that I have used seems to work for a while, then my brain becomes 'immune' to it at a certain level.

 

[Debbie53]

I would like to hear about some of your experiences with a medication(s) that used to work for you and then all of a sudden did not. I have not talked to any neuro who has been able to explain this to me. One day you wake up and you realize your meds have stopped working for you. Or maybe one day you develop very strange, intolerable side effects that you have never experienced and have to stop the meds.

I know our bodies change but it is still a very strange phenomenon. (sp?)

Has anyone experienced this?

Hi to all,
Nakamova Yep I agree with you - Neurologists whose speciality is epilepsy should be better trained. I have hated my neurologist and am now seeking help from a different one. My GP who is a lovely man as well as being a very good doctor is now helping me. AND no I do not fancy him I have complete trust in him.

The internet has given me the most help and they are the American ones.

I have had side effects come on after taking Keppra (levetiracetam) for over 3 months. My neurologist thought it unusual. That does not matter - it happened! He should do more research or perhaps just stick to research. Looking back I did not like his manner. He was not friendly.

Hi Blessed,
Yep I listened to my body but no medical person was listening. They think they know better. Nooo. Now I am with a GP who is even better than a previous neurologist.

Someone once said that things happened during the night. I have always wondered why this was so. Earlier when I was coming off levetiracetam (Keppra) and starting treatment of zonisamide the nights were the worst. Now I have coroboration that it wasn't me but the drugs.

Hi Sabbo, I started sodium valproate 1983 and stopped taking it 2015. I have found out that I should have changed it far sooner. I learnt this from American websites and not any medical practitioner. I did have a big seizure - I was unconscious and legs were jerking in 2012 - increased but I did not like sleeping half of my life away. So I came off it. Why is it that the medical practitioners will not acknowledge that sodium valproate is a sedative. In every letter from my neuro he has stated "drowsiness"! And he put in his letter that I could go back onto sodium valproate and put the exact same strength I was on previously. The reason why I was consulting him was to come off sodium valproate and find a better antiepileptic drug.

Hi modulator, (Nakamova) I don't know how you can post this.

 

[Porkette]

Hi Folks,

If you want to find the best seizure med for yourself or find out if you are drug resistant just ask your Dr. to do a DNA test on you. By doing this they will be able to see your body chemistry and the enzymes in your liver and they can then take that info and match it up to the best seizure med for you with the least side effect or they will be able to see if you are drug resistant like me. Wishing all of you the best of luck and May God Bless You!

Sue

 

[resaebiunne]

I don't think the best drug is as simple as a DNA test or if it were it would be there gold standard for treating epilepsy by now. I think what you meant to say is that a DNA test will help in determining which medication you will most likely tolerate best by your body. I find it ultra hard to believe we know enough about epilepsy to know that it is genetically caused, which would would render such a test purposeless for determining a medication.

 

[Porkette]

Hi resaebiunne,
Doing the DNA test will help the Dr. find the best seizure med for a person with the least side effects or it will show if a person is drug resistant. This is what my Epileptologist did to me after trying over 10 different seizure meds and the test showed I was drug resistant. Sometimes Drs. don't want to do the DNA test because they are making money from the drug co. when they give the person a new med. Here's wishing you only the best and May God Bless You!

Sue

 

[Sabbo]

I've been on nearly every AED out there for the types of seizures that I get.
Tegretol, Phenobarbital, Primidone/Mysoline, Dilantin, Neurontin, Topamax, Keppra, Depakote, Lamictil, Vimpat, & Zonisamide. I often joke about feeling like a lab rat. I was allergic to a lot of them.
Those that control my seizures for a while seem to stop working after a bit, allowing breakthroughs--even within 3 or 4 hours of taking a dose!