Zonegran probably a no-go...

[Crystal11]

Hello everyone. I started Zonegran for better control of my complex partial seizures as well as preventative for migraines that are happening up to 4 a month which is horrible. I take Keppra XR 2000mg, Lamictal XR 400mg, Zonegran 200mg for Epilepsy/migraines. I use Butalbital for migraine PrN/as needed and Propranolol Inderal for Tachycardia which also can be helpful for migraines.
So- I've been taking the Zonegran since Oct. 23 until now and still have had a total of 4 migraines this month and two were moderate two severe. It doesn't seem to be helping at all and I had a complex partial seizure last night that worried my roommate.
I gave Zonegran a try and frustrated that it doesn't work. I also dont feel like being on 3 seizure meds each day adding up to 9 pills! I prefer PRN/as needed medication for my migraines as the aura starts or my tachycardia. My cardiologist recommends being on an as needed drug compared to a daily med if the condition isn't a daily event. Epileptologist recommends a preventative since my migraines have increased since last visit. She also prescribed PT/physical therapy as well for extremely tight muscles which cam be a trigger for tensionheadache which progresses to migraine in my case.

I was hoping for better outcome. Haven't started PT yet. Start Dec 15 and will help I'm sure. Tired of being on sk much. We will be making a plan of action to reduce of eliminate some meds over time.

[Nakamova]

Sorry to hear that the Zonegran didn't work out, but I agree that it may be a blessing to get back to 2 anti-epileptic drugs instead of 3. I hope the PT helps -- in general, massage and tension relief can go a long way.

[Rae1889]

Hi cyrstral. Havtn hrd from you in a wilhe. Sory to her the zenegron is not wolring for you. I hope your nueor find something that deos.

[Crystal11]

I see an Epileptologist now so she seems to be with it much better than my other neuros who seem to be in a hurry, in my opinion. I know PT will be a litteral pain but I'm sure it will help with muscle issues that can trigger big migraines.
Zonegran just didn't seem to work much and I called in to my doctor and waiting for response. Maybe another as needed med might be more effective.
No one likes being on so many meds lol. The less the better as long as it helps.
At least I gave it a try though. Really don't like the fact of already being on two just for E.
Staying possitive though and I'm sure something will work out.
Take care everyone.

[Endless]

Hi, Crystal,

It's so good to hear from you. But sorry it's because the Zonagran isn't working out. What drug are they going to try next? So many medications... hard to manage because they all interact with each other inside the body. Hard to tell what any one drug will do because of that.

I bet your medication schedule is hard, too. When I was on some anti-epileptic drugs that were 3 times a day plus supplements that had to be taken at least an hour away from the seizure meds I couldn't remember when to take what. Even with the labled morn/aft/eve pill boxes.

Will you let us know about the PT? I'm really interested in what they have you do. I'm in PT for the muscle and joint pain, and the dizziness. I'm surprised that it's helping. I was a non-believer going into it. (She's just doing massage for the tight muscles in my neck and back - would love to know if your PT person is doing more)

[stilldancing_98]

Zonegran also gave me kidney stones. So I'm getting off of keppra and zonegran. to Depakote xr only for a little while, because I do not want to be on depakote.And I'm doing the vns.

[Crystal11]

Endless- hello!
Even though I don't beleive the Zonegran is working, it might if I took it longer. I tend to be stubborn too hehe. My epileptologist said to take it for migraines but it would also add to seizure control too. Three meds is a tad too much and I don't like it at all. I have three other medications I take as needed for other conditions and I dont like that either but I'm taking care of myself the best I can. I really think two meds for seizures is all I want to deal with at the most or my "limit" lol.
I am still on Keppra Xr and Lamictal Xr for E. We want better control and because I've had seizures since age six, it's always going to be harder to control my seizures.

PT is for stiffness and pain and for cervicogenic headaches. When a headache starts as a tension HA then it leads to a migraine. Those are horrible and not in control at all.
I've had PT for balance too since I am deaf without my hearing aids. Still have severe hearing loss even with hearing aids. Hearing imp. can cause major balance issues.

I hope PT will help with pain and it was interesting because I've been wanting to go back to PT but didnt know where to go or how to go about starting services again.
I am looking forward to improvement but know I'm going to be hurting. I was born three months early and started PT when I was 4 maybe earlier.
My Twin deals with similar issues as I do.
I'm trying to get her to see a neurologist, and then get a recommendation to go into the Epilepsy clinic of the university hospital I go to. Her seizures are like mine, she tends to have the shorter complex partial seizures more often than me but Keppra Xr helped a lot with those for me.
The longer 3min complex partial seizures still get me but not near as often as before meds.

I am staying possitive and even though I'm in the epilepsy clinic, I just sort of feel sort of like "no more adding meds to the long list" lol.
My doctor did say she would like me to get to the point of reducing meds down later on if things get better.
Am hoping so!

I will write another post about my PT and plan and see how it's going to help. I go three times a week for a month unil I make progress or have reached the goal.

Take care

[stilldancing_98]

You know my s. have always been hard to control to. They are putting me back on Vimpat. Have you tried that? It is the only med that works for me. I get headaches but not like you. I think PT is always a good idea. I was doing it for my myoclonics. My son does it for his bones.I go to a university hospital. It's great and it sounds to me that that may work very well you. Its all team work up there.Teresa

[Crystal11]

UPDATE:
well went to neurologist for an urgent appt. We spoke about seizure frequency, migraine pain and neck injury as well as Zonegran doing absolutly nothing for me. He said that several seizure meds can be used for pain. I did notice when I was on Tegretol Xr 600mg that I didnt notice pain as much.
He evaluated me and decided to try Trazodone which is an anti-depressant, pain medication and helps with sleep which I have problems with. No depression though yay.
So I get it and I take 1-3 pills at night. 50-150mg but starting with one then moving up as needed to get to sleep. I also have Butalbital for quick reliefe as soon as aura starts to the migraine. Kinda weird, I have aura for two conditions.

I start PT day after tomorrow and getting nervous. I know it's going to hurt especially my neck injury. I'm protective over that area and even I can't mess with it much.
So, it went good and we talked for s good 20min. My epileptologist visit is Feb 11th and I hope by then I can say I had maybe 3seizures and 4-7 migraines or something. I have 3-4 a month and 1-3 complex partial lasting 2-3mins and 10-20 30-45sec complex partials my "small ones".

Med schedule is insane now! I will be reducing some meds over time as things improve. I am "medically refractory" so I don't know how much seizure control I really will have. My complex partial seizures are less than what they were before which is good.

New med schedule (hard to keep up now!)
Lamicatal xr 400mg/day for seizures
Keppra xr 2000mg/day for seizures
Trazodone 50-150mg for migraine prevention
Propranolol 20-40mg for tachycardia and premature atrial contractions PACs/skipping
Butalbital 50-100mg for migraine taken asap to it becoming worse.

Elestat 0.5mcg eye allergies as needed PRN
Veramyst for allergies in the morning.

Whew! Anything else! Lol
Alrighty then.. That my med schedule holy crap lol a lot of meds going on. I bring meds in old antique green glass bottles that are small so it look like I have a whole pharmacy lol.
Hope to reduce or get rid of a med for E, maybe Lamictal xr but still deciding because Keppra xr takes my smaller ones away. Hard decision!

Good thing I have medic Alert bracelet and papers explaining my condition and now complicated med regimen!
I'm allergic to Phenergan and happy I finally have an iD that has it on there.
I pay $30 a year and guys it's worth it. Anyone calling the number on the back of it, gives the ID number can get lots of info fast. Same with EMS if you're alone.
I recommend it because you can put everything in their computer files, contacts and doc contacts, med list and schedule, insurance info, and you can change/add to your file online which is good if your adjusting meds or doses a lot or develope another condition.


I hope all you guys are doing well.
Take care
Crys.

[Nakamova]

Hi Crystal,

I hope the latest drug combos help with the pain. Don't be nervous about the PT -- they won't be hurting you. Usually PT involves gentle incremental movements repeated over and over again. Very tedious, but improvement comes eventually, and without pain. Definitely let your PT know about your worries about any painful movements, and let him/her know that you will pipe up right away.

[Endless]

Crystal,

I'm in physical therapy for the joint and muscle pain (caused by lamictal) and a neck and back injury/arthritis. My physical therapist is actually very careful not to do anything that hurts me and inflames the condition. There are a few strenthening exercises to help stabilize the involved parts of the body, a few gentle range of motion things, and then a lovely massage at the end.

No worries!

It's not the same as the rather tough PT I went through after a bad ankle sprain. Now if I was going in for THAT again I'd be worried, too. lol....

[j.j.]

How long were you on zonegran before it gave you kidney stones.
Janet

[stilldancing_98]

I just found out a few months ago. But I have been on it for years. They are taking me off of it after the first of the year.