Do you ever have problems with Medication?

[Prenovate]

Take a minute...

 

[Belinda5000]

I have 5 medications I'm allergic to, and I'm also med resistant to every drug in the Tegretol family except the original Tegretol.

These are just a few problems I've had with medications.


Belinda

 

[C0urt]

I am allergic to atleast two meds
depakote and
keppra one causes liver damage, one causes psychotic breaks

all sorts of fun

 

[valeriedl]

I've had epilepsy for 11 years and at first I was on so many different meds that I lost count.

I was allergic to one so I couldn't take it. One made me so tired that I slept all the time, it took everything just to get out of bed to go to the bathroom. There was one that I took and completely lost my appetite. I barely ate a thing and lost a ton of weight, I had to stop taking it because of that. Some I took didn't help with stopping the seizures and others actually caused me to have more seizures.

I don't remember which meds it was that caused which problems but if you can name the med there's a good chance that I had probably taken it.

Everyone is different with how they will react to meds though. Just because one med causes side effects or doesn't work for someone doesn't mean it's not going to help with you. A good bit of the time it's a lot of trial and error to find out what's going to happen.

With the meds that I'm on now I'm still having seizures and I also have a VNS implant. Before this combination of things I was having around 20 seizures, if not more, a month. Now I usually have an average of 7 a month

 

[KatieCoy83]

Nothing epilepsy related but viccodine. I was given it after I got my wisdom teeth removed. It knocked me out cold. My husband found me passed out on the bathroom floor.

 

[Cint]

~Allergic to Phenobarbitol
~Felbatol caused major migraines
~Trileptal caused hyponatremia
~Was in a drug study for Sabril before it was on the market- it made me suicidal
~When I initially took Topomax years ago, I lost 25 lbs. within 2 months
~And a medication prescribed to me for depression-Zyprexa (actually an anti-psychotic because I was SO depressed after brain surgery) brought on Type 1 DIABETES

 

[kirsten]

I wonder if I can remember why I can't take most AEDs...let's try.
Tegretol and topomax: SIADH hyponatremia, which has cancelled out all drugs in their group
Lamictal: Stephen Johnsons
Keppra: Irritability and anger
Epilim: I can only take low doses. Therapeutic dosage inexplicably gives me syncope.
Conazepam and most of the new drugs: propensity for addiction.
Phenytoin: absorption problems, although we are working on that.

 

[Bernard]

Prenovate - I might suggest you spend a few minutes browsing the list of threads in The Kitchen forum room if you were genuinely curious with your question. Maybe half the discussions here are related to issues with AEDs.

 

[kirsten]

I just saw that Prenovate is a business collecting market research. Can't believe I wasted time answering this question. Meh.

Prenovate, please be upfront about your motives with your posts.

 

[Prenovate]

Prenovate is an organization that empowers people to better manage their chronic conditions. By posing this question in the forum, we are able to educate ourselves further on this pertinent topic. Thanks for your response.

 

[Nakamova]

Prenovate is an organization that empowers people to better manage their chronic conditions.

By "organization" do you mean "for-profit business?" It's nice that you are getting educated about epilepsy, I'm just curious about what you intend to do with the insights you glean from CWE.

 

[kirsten]

They are a for profit tech startup. They're still in beta, so they're not worth anything at the moment but they have been joining a lot of forums and communities like this one since April this year. They used to be called WE Health but I can't find any info about that company.

http://www.experienceproject.com/about/prenovate
http://exchanges.webmd.com/epilepsy-exchange/groupstory/33497324
http://ehealthforum.com/health/user_profile_posts_690471.html

They are launching their first pilot for epilepsy medication adherence. http://istart.org/startup-idea/business/prenovate/24406
Their WOT trustworthiness is exceedingly low, so I personally wouldn't sign up for their beta for privacy concerns, although WOT scores are not always accurate.

http://prenovate.net.cutestat.com/

 

[arnie]

Thanks for doing some research on this, Kirsten. I hate it when companies use misleading tactics to get information, which is exactly what this Prenovate company has done. They know that on forums like this most people will assume that these are individuals they are talking to and not a company doing some sort of market research or data collection project.

 

[snainc]

Marijuana and Seizure control.

I consider myself very lucky... I have been on phenobarb Dilantin and Tegretol. Over the years I have been able to get down to just tegretol. My doctor took me off of it too (seizure free for over 18 years), which was fine for about 9 months and then I seized. I'm back on Tegretol, but on half the dosage. Which I did on my own. From 400 mg to 200 mg. 1 pill when I wake up & one when I go to bed. It's now been 5 years + since that last seizure. I have been a casual marijuana smoker since High School. I have on occasion smoked if I felt "on edge", and never seized. Has any one else used weed, to help with seizure control ?? I am aware of the 60 minutes report and "charlotte's web" (a strain of weed high in CBD for the control of seizures. Any one else out there try it ?

 

[SlimBlue]

I think this thread should be locked.

And advertising research companys should pay for the information that *real* people, with *real* harsh conditions provide to others in the same situation for free, out of love- for advice and support.

How do you sleep at night?

 

[tiggy'smom]

If we are just speaking of the AED's Keppra made me angry, gave me panic attacks, and anxiety so severe I thought I was having a heart attack on several occasions. Trileptal rotted my teeth and made a few fall out. I even had a dentist while standing over me say to the hygentist "see, this is a very good example of meth mouth". I am tolerating Topamax except for the rise in body temp. I just came off completely Lryica because I could not tolerate the weight gain (40 lbs in 1 yr), and just started neurontin. I have noticed that with lyrica coming out of my system my mood is better. There were days I would/could not get out of bed. Gross I know, my personal hygiene started to suffer. I pretty much became a hermit. I didn't leave the house, and stopped all my hobbies. I was told that the lyrica IS NOT an anti-depressant but I went into such a dark place on it. And that was before my Mom even got sick. Now I feel back to myself again. I don't think they know just how these things mess with our brain chemistry, we're the only ones that know how they work in our bodies and the ones that do and don't work for us.

 

[nozuka]

I am not allergic... but the problem or problems I find with my meds is that it really affects my mental ability...to learn and remember things is a struggle for me everyday.
I take Lamotragine.