Concerned about long term med effects

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orpa

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Hello everybody. Not really sure what to say this is all new to me as far as actually posting something. As the title reads I am concerned about the negative effects of long term use of Keppra 1000mg daily combined with Pheno 120mg daily. Perhaps your expierance, comments, or thoughts will help. Also Thank You for all of you either reading or posting. It's nice not feeling so alone.
A bit of my history with epilepsy. In April of 1998 I had severe sinusitis. I thought i just had a flu bug because I never had sinus issues before that. this lasted a couple of weeks till finally i got so sick I was taken to the ER. The infection somehow traveled up into the surrouding proctective layer of my brain. At this point I was having Grand mal siezures never had them before. So I had to have surgery to remove the abcess caused by infection. I got better I was in the hospital for 3 weeks when released I was on Dilantin for couple months. Then about 3 month after release I had a Grand Mal this went on having seizures roughly every 2 or 3 months. The Doc's tried a differant recipes. The one that worked the best was and still is Keppra 1000mg and Pheno 120mg daily. Now the amount of time between siezures slowly in the course of 7 years was longer with time. Till finally the last one was in October of 2005.
So back to my concern. Should I or when should I try to get off med? Should I be concerned about the effects of being on meds? I know these are broad and general type questions. I guess I simply want to share and wonder. Or perhaps even help others. Thank You
 
Hi,I share your concern.
I think about what these drugs are doing to my insides short term and long term constantly.
I have spent so much time online looking up each drug that I have taken much to my husbands frustration.
What scares me is that I won't know until I'm struck down by some other illness and then they'll tell me that it may have been from the AED I've had to take.scary stuff.
 
orpa,

Warm welcome.

What does your neurologist recommend? Has your neurologist suggested trying firstly to decrease your medication? Are you being tested for any long term affects?

Its 2/3 years seizure free in our neck of the woods that they (his neurologist) say is a good time to 'consider' decreasing or stopping meds but under supervision not at own will, under strict medical supervision. My Son has not reached this milestone, though did go 17months seizure free.

You don’t mention if you suffer from side effects that impact daily life, and maybe not and if not that’s great. Taking these E meds (mood stabilizer) for many years can’t be all good on the body, but those with seizures know, sometimes there is no choice in this matter, its keep safe and live with the meds.

I can only speak for us, and know if my Son was 7 years seizure free we would be looking to taking dosage down firstly and if that worked next step would be testing the waters med free, again under strict medical supervision and general overall supervision because hard as this is to say, though a seizure free period can run for a long time, can come back with a vengeance when not expected.
 
Kirsty1327
Yes it is scary and that's why I am doing what you have been doing research. It frustrates my wife mainly because she is concerned about me obsessing over it and not able to enjoy life. I don't like what could be happening to my body but I am also very Thankful for the fact that these medications exist and work. And I am looking at ways to I suppose counter or limit the possibble negative effects by eating healthier, exercising and also mental therapy hobbies and what not. I am looking into vitamin supplements and oraganic foods to limit other toxins into my body. I will take these life saving meds for as long as I can or have too and just simply look for healthy ways to live with them. We're not alone in this battle and there many ways to fight the effects and we have to remember that these med's are essentially out allies.
I hope that your research will lead you in the right direction and that things will not seem so scary.
 
Everyone has different experiences on the meds. Most of us experience side effects of one sort or another and have to balance them against the risks of having uncontrolled seizures. If your side effects are intolerable, then you should discuss what your options for other meds might be with your neurologist. From your seizure history, it might be difficult to go med-free -- the more you have, the more likely it us that your brain has gotten into the habit of seizing. If you still want to go off meds, it's considered best to wait until you have been seizure-free from 2 to 5 years. And it wouldn't hurt to have an EEG towards the end of the taper process to note any abnormal brainwaves.

You might find this link helpful:
http://www.askapatient.com/viewrating.asp?drug=21035&name=KEPPRA&PerPage=60&sort=timelength&order=1
 
My question is , do some of the meds even work at all after long time use??? I have been on Tegretol since i was 12 and am now 37!!
 
Some people develop a tolerance to their anti-seizure medications, but for the majority of folks, the meds continue to work. There may need to be adjustments made from time to time depending on how someone's metabolism changes over time, or other similar age-related factors.
 
Hi orpa, nice to meet a new person.

I've had epilepsy for about 9 years now. I've been on several different meds and dosages through the years. I had different side effects on alot of them, and still do with a few. With some all I did was sleep. Others I ate everything in site where as on different ones I didn't eat at all. I've had all sorts of side effects good and bad that I don't remember.

I'm on keppra and I know I have keprage (sort of a nick name for the med making you angry). I'm also sleepy alot, but not nearly as much as I've been on other meds.

When my neuro sees that I'm doing good and I've started to have less seizures he has decreased the dosages, or sometimes taken me off the med completely. I think the longest I've gone without having a seizure was 3 weeks though.

Other than the grand mals you were having, do you know if you've had any other types of seizures through the years? There are more types than grand mals. If you haven't then I would talk to your dr and find out about the meds. Ask him if there is a specific reasion that he is still having you take them?
 
I haven't seen a nuero. since about maybe 4 yrs. ago (had eeg and Mri both were good). At the time nuero. wanted me to wait altleast 5 years seizures free. It's been 7 years only reason at this point for waiting is simply because of being able to work. My GP Doc. has said if I begin the weaning process then no driving ,for 6 months, and of course the possiblity of having a seizure would be a good reason to continue being on meds. I agree. I have only expeiranced Grand mal type and only while sleeping. My reason for increasing concern about negative effects to my physical well being is to due an increase in anxiety related symtoms and muscle weakness in hand and foot. I recently changed employment and went from a day shift to night shift. I know that night shift in itself is stressful regardless of meds or no meds. Prior to night shift my only real symtoms that I know of were muscle weakness and light sleepy zombie like mind symtoms. Anxiety came since on 3rd shift. I plan to discuss perhaps a slow process of weaning. Maybe decreasing dosage over a long period of time. Nakamova I like the idea of eeg monitoring if I begin the weaning process something I will persue if go forward with this plan. Also does anyone know of a good source for quality natural organic vitamin and mineral supplements for general health and also perhaps vitamins and mineral supplements that are known to help counter the negative effects of epilepsy meds. Thanks to all. And to Chaz1 thanks for the warm welcome I feel for you and your son hope that your son will improve.
 
Hi Orpa-

Don't disregard homeopathy.
It's working fantastically for my grandmal seizures.
 
although long term use of medication is a concern, one should concentrate on the present.
:)
 
Welcome Orpa,

I understand what you are feeling, I have been on pheno most of my life; I was put on it when I was 3 and I'm now 44. I was on 90mg most of my life but recently the neurologist reduced pheno to 75mg. He also wanted to take me off of it but was waiting for otheroptions to do. He told me that pheno is not a med. that is used now and it may not always be helpful to control seizures. Iwas wondering the same if your on all your life does it take effect anymore. The neurologist was indecisive to answering that question but told me he wanted to take me off it. I have complex partial seizure now but before they were grandmal.
 
Hi, Opra,

Keppra is a relatively new drug. It was launched in the U.S. and Europe in 2000, so data on long term use just doesn't exist.

Another issue is that adverse reactions are usually only reported through the physician, and they often don't report it. There IS a place where patients can go to report an adverse side effect:
http://www.fda.gov/Safety/MedWatch/default.htm

That's a great site because you can also see any safety updates on your drug. Just search on it.

I struggle, too, because I'm on Lamictal which is also relatively new. Drugs that have been around forever, like Dilantin, are just recently recognizing the long term side effects.

It sounds like you've been seizure free for about 6-1/2 years. Most doctors want 2-5 years seizure free, so I bet your doctor might be willing to let you try it. My only advice, based on what I've read in here, is to taper off very very very slowly, to minimize the chance that your body will react to the withdrawal. And, if it does react, you catch it quickly while you are still on the drug, and can taper back up quickly.

Please talk to your neurologist about it. He knows your medical history and will have the best advice for you.
 
Hey Thanks to everbody for the resonses.
Kal87 I was wondering if you could perhaps share how this is working for you and the process involved Thanks.
My plan is to discuss a slow, very slow process of weaning next time I see Doc in August. At this point I am doing research so as to approach this, with questions and concerns, to a nuero. who has expeirance in this specific type of medical issue.
 
orpa said:
Kal87 I was wondering if you could perhaps share how this is working for you and the process involved Thanks.
Click to expand...

Actually homeopathy has been proven numerous times not to work.
The only positive results have all been anecdotal. Recently the homeopathic company Boiron has been sued for making unproven claims about homeopathy & are being sued again in Canada.

Homeopathy is based on the principles that like cures like (i.e. poison ivy will cure an itch) and that the more dilute a potion the more potent it is. Both those principles contradict natural (and proven) physiology. Also, their dilutions are so weak that there is not likely to be one molecule of the initial ingredient in a 30C solution so that any effect is totally a placebo effect.

ABSTRACT

I examine the positive and negative features of homeopathy from an ethical perspective. I consider: (a) several potentially beneficial features of homeopathy, including non-invasiveness, cost-effectiveness, holism, placebo benefits and agent autonomy; and (b) several potentially negative features of homeopathy, including failure to seek effective healthcare, wastage of resources, promulgation of false beliefs and a weakening of commitment to scientific medicine. A utilitarian analysis of the utilities and disutilities leads to the conclusion that homeopathy is ethically unacceptable and ought to be actively rejected by healthcare professionals.
Click to expand...

Bioethics
 
orpa, hello

You mention a change "night shift" and "Prior to night shift my only real symtoms" so could this change have impacted your bio clock and in turn bringing on anxiety and some.

It’s no easy decision to alter meds. My Son was considering stopping after 17 months free (his neurologist said do it if he wanted) and suddenly bi weekly T/C seizures hit and yes he was still on the meds. To change/modify meds is a very, very personal choice.
 
Chaz1
Yes I believe going from day to night shift messed up my body clock and the way things work. MY hand and left foot has always been my weaker side but since being on epilepsy meds. it seems to be a bit more weaker. Not limiting or disableling just noticeably weaker to me atleast. And since going to night shift about 3 months ago shortly after the anxiety came on I became very aware of my symtoms in a scary sort of way. I began to fear that it was something more than the side effects of meds. Shaking off the fear seemed impossible I became obsessed looking up symtoms and constantly thinking about them. It has not been until recently about a week now that my nerves have calmed a bit. My thoughts and concerns have calmed a bit. Prayers, research, finding wedsites like this, relating with others, eating healthier, getting more sleep, and my dear and patient wife have contributed to getting and feeling better. The anxiety is still there a bit and sometimes starts to make me fear the symtoms but I don't slip into the "panic mode" I am able to tell myself slow down and reason "it's the meds man". I still am going to pursue via a team approach with my Doc's looking into weaning off the meds. as safely as I can without comprising my health. Again Thanks to all you here.
 
Hello orpa,

That’s great to hear "am able to tell myself slow down and reason". Sounds like you have a lot of blessings in between it all. Nice.

We will be here to share your journey if you will wish to share of course because we sure can learn from each other, that’s a real privilege.

Chaz
 
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