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Help! Am I Becoming Tolerant? Do I Risk A Change In Meds?

Help! Am I Becoming Tolerant? Do I Risk A Change In Meds?

I have an upcoming annual review with my neurologist and am thinking of raising that I’ve got SUSPICIONS on whether my medication is still working as 100% and that I may be experiencing tiny petit mal seizures.

What’s troubling me is that it could just be “normal space cadet” /“lost word at the tip of the tongue” exhaustion and not petit mal seizures at all…I hate the idea of disrupting my regime on a “suspicion” as I have no side effects right now.

Now I’ve started imagining scenarios of… read more

A MyEpilepsyTeam Member said:

I'm on Keppra myself, though I'm on other AEDs on top of that, but I think you should keep a diary of how you are feeling, then when you go for your review, then the doctor can look at the diary and decide on what options s/he has. That said, the longer that you have been on a particular AED, the less likely the cause of your problem is the side-effect of whichever AED you are on. I know this all too well. Remember that no AED is without any side-effects. I once had to be taken off Carbamazipine, as a blood test showed that it affected my liver, and I was taken off it straight away and put back onto Epilim. I was in my late teens at the time. As others here said, I too, hope that you and your doctor/specialist gets the problem sorted out. Good luck.

posted about 2 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member so helpful thank you. I really appreciate the time you take to respond with detail, to my post and others I see. I feel better with some knowledge of what the plan of events may be. Waiting is such a bugger…won’t see my Dr for a few weeks yet, which leaves my mind to loop through possibilities a little tooooo long. Your answer helps me.

I’m fairly early in the journey, in terms of medication trials anyway. I have only tried keppra monotherapy (horrible) and lamictal: frisium combo. The latter worked, until now.

Ah well. So I could have ‘idiopathic refractory generalised catamenial absence seizure ..epilepsy’ 😆 trying to say it 10 times quickly

Thanks Randy!

posted 2 months ago
A MyEpilepsyTeam Member said:

First thing, first . We all react differently to the meds. What every you experience on a certain drug, someone my experience something different on that same drug.

I don’t know where you’re at with meds, but the first thing the Dr. Tries, is to keep your medication(s) levels up. If they are low, the Dr. Will increase yours meds. , until you come up to your max weight dosage with the brand you’re taking.

The next step is deciding what medication to try next. And will there be more than 1 medication.

Your body probably is tolerating to medication(s) you’re on . It’s very possible. Between you and your doctor, you can discuss the next step . Are you increasing, changing, or adding a combo of meds ? How many will you be taking? Will this be the last time changing meds or will your body start tolerating those too? All these questions along with others, will come to mind .

All you can do is pray that you and your Dr. Find the right medication or combination of meds. It’s can be frustrating changing meds, increasing the meds, and adding a new medication to the combo you may or not already have.

If that’s all that’s going on and your Dr. Still hasn’t found medication to control your seizures, then it time to try a new treatment that doesn’t deal with changing meds. Treatments like, the Brain Surgery , VNS, DBS, CBD oil and RNS.

You may be in the same boat as I am. The Neurologists / Epileptologist Dr.s call it Refractory Epilepsy. Meaning your body is tolerating all seizure control medications. I’ve been on the majority of meds on the market and I still can’t get my seizures 100% controlled . I’m up to 5 medications combo . I have done a couple of treatments besides medication. I’ve had Brain Surgery and the VNS . Now my Dr. and I are scheduling me for the DBS treatment.

Hope this helps. Prayers that you and your Dr. Get things figured out.

posted 2 months ago
A MyEpilepsyTeam Member said:

There many AED meds that will have no affect on a baby. When or if you want to have one consult Dr for best one for yourself. As far as you being suspicious of having small seizures your description does sound like one. Pass it on to Dr for best advice cause it's bothering you now and need relief or answers. It's great to know how well your meds have helped you w/o sides too.

edited, originally posted 2 months ago
A MyEpilepsyTeam Member said:

When you go see your doctor let him know all that and hope all goes good and well for you stay positive never give up

posted 2 months ago
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