Can a person be oversensitive to these medicines?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
158
Reaction score
0
Points
0
I really want to start rebuilding my life and I know part of that is getting going on a medication but my body isn't cooperating.

A few days after starting a small dose of Keppra my face swelled up and I felt like I was having the flu and a hangover at the same time. I slept for 16 hours and could not keep my eyes open-- finally called doctor and she said to stop it and gave me a tiny 25 mg topiramate and told me to just take that until we talk again.

I took it yesterday and was so happy because it didn't make me feel weird at all... but then in the middle of the night I woke up with such severe back pain that I wanted to scream. Both my legs were also killing me . It felt like the bones hurt. All the pain was in my lower back and from my knees down my shins only. I've never experienced anything like that in my life. It lasted all night. There was no way to sleep at all. My legs have gotten better but my back is going on 24 hours like this and 24 hours without sleep is a giant NO NO.

Normally I don't have trouble starting medications... I've had to start and stop so many all my life that I don't understand why this is a problem. Has anyone else been oversensitive to seizure medications but not others?

More specifically has anyone had severe back pain from Topiramate? Does it pass??!?

Sorry I know I sound like an idiot. I'm just confused and frustrated.
 
I don't think you sound like an "idiot". You just have different reactions towards certain meds and have to narrow it down to what is best for you. I am sure it's all about trial and error. Most of us have experienced negatives with our meds. Good Luck!!
 
giveasmile

You are no IDIOT, so you can scrub that. Trying to rebuild your life is some thing we all aspire to. When you get side effects, like you have from a medication, you get off it as fast as you can and depending on how high a dose, decides how you come off them, cold turkey is generally a bad idea but there are exceptions. The pain in your bones, I had with the keppra but it would be a good idea to tell your doctor, I get them after a seizure as well.
Its not that you are over sensitive to medication, it just does not suit you.
 
I also take Topomax (also known as Dopemax) along with Keppra. I haven't experienced the back pain like you, but it is listed in the side effects:

http://www.drugs.com/topamax.html


Topamax side effects

Get emergency medical help if you have any of these signs of an allergic reaction to Topamax: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself. Call your doctor at once if you have a serious side effect such as:

sudden vision loss, pain around or behind your eyes;

dry mouth, increased thirst, drowsiness, decreased sweating, increased body temperature, and hot, dry skin,

confusion, slowed thinking, memory problems, trouble concentrating, problems with speech or balance;

vomiting, loss of appetite, tired feeling, irregular heartbeats, feeling like you might pass out; or

severe pain in your side or lower back, painful or difficult urination.
 
I have been put on both of those meds. and I could not tolerate the side effects.

I have been on all the meds. and either the side effects were so bad or I had seizures.

The only meds. I'm able to take is Dilantin and Clonazepam.

I have become sensitive to a lot of other meds. my pharm. & Neru. said they have not seen someone so sensitive. I'm guessing part do thus is my age, I'm 60. (just guessing)

I'm having all my vitamins compounded now.
 
Believe me don't feel like an idiot. This place brings so much comfort to me because when I am experiencing strange things because of my seizures I know that I am not alone here.


Most of us have had trouble with certain medications, like I can't take Tegretol because it makes me feel fatigued, tired, and I have back pain from it too. I can't take Trileptol because it makes me feel suicidal. I also can't take too much Lamictal because I get constipated real bad. Everyone responds differently and Jiggeplaya's right about narrowing it down to the right medicine that your body best responds to. I wish you well and will pray that you find the right medicine.
 
I've taken so many different meds and dosages that I've lost track, it's been a sort of trial and error thing with me. I've had many different side effects from meds that I've had to stop taking them, adjust the dosage or just start taking a different one and hope that works.

Trust me your not an idiot - if you are then so am I!
 
Call your doctor at once. And start drinking a lot of water.

As listed in the "emergency" side effects by Cint, severe pain in lower back or side IS a side effect of Topamax -- it is a symptom of kidney stones, which Topamax can cause.

It's unlikely that one dose of Topamax caused kidney stones, but the type of pain you are experiencing is severe enough that your doctor should know right away.
 
Erased cause posted new instead of eiditing this oen. Bad night.
 
Last edited:
Thank you everyone who replied it really helped me because after reading these posts I gave myself permission to stop taking it. I don't know now if it was one day or one dose but whatever it was it was really fast, granted I'm not the picture of health.

It could be my adrenal stuff because ever since I had my adrenal crisis in 2010 I feel like my body over reacts or under reacts to everything. Also, you mention kidney stones and I never had them but my father was in and out of the ER a lot with them and eventually he had surgery for them so who knows?

I stopped it but I totally goofed on the phone when the doctor called. She started out saying, "you don't like this one either?" and that made me feel like an annoying patient bothering a doctor over something trivial so I got myself all intimidated and babbled trying to say it wasn't at all like my reaction to the Keppra but... and I don't know how and I don't why, but I heard myself say, "Should I just try again but with a half of a pill?" She said, "Ok let me know how you do." And now I'm sitting here like... WHY DID YOU SAY THAT?!?!?!?!

Now I don't know what to do and my appointment isn't for three weeks. I'm also just realizing it's midingiht and I have not eaten at all today. I don't even know what I did today except talk to thte doctor this morning and post here.
 
Ha ha! I can just hear myself saying the same thing!! That's why I prefer emailing our neurologist and epileptologist.

OK, well, if it were a kidney stone, you'd probably still be in pain (are you?). Unless it passed. But I doubt it would have been a kidney stone, unless you already were working up to one, and the acidosis caused by the Topamax put you over the edge.

I don't supposed they tested your electrolytes before putting you on Topamax?

Did you go ahead and take the 1/2 pill?

Not eating all day -- that's not good. Appetite loss is a side effect of Topamax (although it didn't affect our son as much as the Zonegran he's currently on). But, I'm surprise that it kicked in so fast.

And not remembering what went on -- do you think you had seizure activity during the day?

It seems like you're in a bit of a spot -- if you stop taking the med now, and don't communicate that with your doctor, she's not going to be too pleased 3 weeks from now.

However, if you do go ahead and take the 1/2 pill, and you do have a kidney stone, then that's not good either.

Perhaps you could wait a day or two, and if the back pain is gone, try taking the 1/2 pill and see what happens. If it comes back, you know it's the Topamax doing...something.

Or...you could just swallow your pride, and call your doctor back, and apologize for not being clear before, but that you had this horrible back pain that wasn't like the Keppra, but quite dreadful in its own little way. After all, what really matters in the doctor/patient relationship is YOU -- getting the right treatment for your seizures. So...don't be afraid to be proactive for yourself.
 
Thank you so much, Karen. I thought I was over all my intimidated by doctor stuff but I guess I still panic.

The back pain did come on fast and severe and I don't have it anymore. The bone pain vanished after I missed one dose and the back pain was gone one hundred percent within 48 hours so I doubt it was stones too but it did go away once I stopped the medicine. I just looked up that acid thing you wrote and it could be because my adrenal insufficiency does mess up my electrolytes.

Sadly, no one routinely checks them and don't know this til I end up in the ER with an adrenal crisis.

I never heard of acidosis, though. I'm going to try and fax my endocrinologist and tell him what's going on. Maybe he can help until I'm brave enough to call the neurologist again.

P.S. I have not taken any medicine since all that.
 
Last edited:
Back
Top Bottom