Zonegran Success Story

By COexmigraineman Monday, September 08, 2008

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There have been several posts asking about Zonegran successes. It is a miracle drug for me. I'm a 50 year-old man who had been suffering from severe migraines for 25+ years. Family history of them. My uncle and I could describe each other's symptoms to a "T". Years of CT Scans, MRIs, every drug under the sun. I was suffering from a 3-day bender back in 2002. Blew through every Imitrex injection, Amerge capsule, and any other drug I could find and, before I reached for the cleaver, I called 911. Demerol, Morphine, etc. failed to break the headache. When the hospital said that they weren't able to do anything more and that they were releasing me to "sleep it off", I begged them to admit me. Thankfully, an amazing neurologist who was a migraine sufferer himself eradicated the hedache with a caffeine IV and other drugs and prescribed Zonegran prophylactically. It truly changed my life. I have not had a single bed-ridden migraine in 6 years since being on Zonegran!! I take 3 caps (300mg) every night, up from the original 200mg prescribed. No mental side effects, but here are the physical ones for me:

- Zonegran has affected my ability to perspire - I don't sweat. This can be dangerous, as I overheat easily. It's a strange side effect, but it's real.

- Zonegran may increase the likelihood of kidney stone production. I have always been a producer of stones, and now I'm loaded with them. I do not know if Zonegran increased my production of stones, but I need to hydrate myself religiously. Several years ago I had to have a 10mm stone blown away with shock wave lithotripsy. Not fun.

- I have a borderline low platelet count. After a host of tests (including for cancer), the conclusion was that the high dosage of Zonegran may be a contributor. I get monitored every 3 months and, if i ever get dangerously low, I will be taken off of Zonegran to see if the count climbs.

All-in-all, the benefits of Zonegran (living a normal, headache-free life) FAR outweigh the side effects.

Try it. If nothing else has worked and you are suffering, is may be your miracle too.

Zonegran went formulary a couple years ago. Beware! Not all generic zonisamides are created equal! Glenmark (for me), for example, is junk. After several weeks, I began getting daily headaches, strong enough to feel like crap. Unfortunately, Glenmark has flooded the market with cheap zonisamide and 'everyone' carries it. The Milan brand works well for me, and my local K-Mart pharmacy (believe it or not) has been marvelous in being able to keep me supplied with this specific brand.

I hope this helps someone...

Tim

Comments (10) | Add comment

Nancy Harris Bonk, Health Guide

9/ 8/08 1:58pm

Hello, and welcome to MyMigraineConnection.com!

I started my second trial of Zonegran in February. Taking 300mg is too much for me, it leaves me feeling depressed and having thoughts I'd rather not have! I'm glad to hear it is working for you.

Oligohidrosis (decreased sweating) a potential side effect from taking Zonegran, is mostly found in the pediatric community, but doesn't mean it can't happen to adults as well. Staying hydrated is so important for a number of reasons. If one suffers from oligohidrosis, they need to make sure they drink lots of water. Dehydration is also a Migraine trigger for some people -staying hydrated will help with both things.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

pandorable

9/12/08 2:08pm

Thanks much for your post. I have migraines for 20 yrs. They have been on and off manageable during that time. They have been unmanageable since 2/07. I stopped working in 2/08 b/c of them. I have one about every 6 days now. I also have daily headaches and neurocardiogenic syncope (dizzy spells). The migraines make my dizzy spells much worse and I am afraid the neurontin I am not as a preventive may also be making the dizziness work. I've gone to physical rehab for the migraines due to tension and stuff in my upper back and shoulders--I do my darn exercises 2X a week even though it leaves me losing my vision on the verge of passing out LOL. I also meditate/do relaxation 30 min a day at least 4X a week. All this to say I have been very frustrated and ready to get on the damn roof and start screaming my head off. I am doing all I believe I can to get better and have had no improvement in several months which I am sure is nothing compared to some people. I know there are people who have been suffering for years. Financially it's a mess. Blah blah blah. LOL I've been on Zonegram for a month--only up to 100mg at night but after reading your post, I am feeling hope for the first time in awhile. I don't know why--but it struck a nerve. I just want so badly to get better. Thanks, Pando

COexmigraineman

9/13/08 1:24am

Hi Pando

So sorry that you're suffering. I've been in your exact position before, going to physical therapy several times a week for "tension"-related massage and ultrasonic treatments for painful neck muscle spasms that we thought may be causing some of the headaches. (Also temple, sinus, and head massage.) To this day, I don't know if the tension/pain was a cause or effect of the headaches. Do you get sinus pain as well?

Interestingly enough, I have had several non-prescribed, deep-tissue massages (focussing on my neck and shoulders) in the past few years which felt outstanding while I was getting them, but resulted in rebound spasms the next day with moderate tension headaches. So I wonder if my strange body actually responded negatively when I was getting the professional therapy for headache treatment? Who knows...

Don't jump off of the roof! 100mg is a fairly low dose. I remember that my neurologist said that he could go up to 500mg before giving up. 200 was a major improvement for me. 300 was amazing. But be careful... Since I posted, I've received feedback and have read on other sites that high doses of Zonegran has led to depression in some people (mostly women). I have NOT noticed this effect. Perhaps I'm just so elated that I no longer have to worry about waking up to a killer headache that I don't notice any mild depressive affects, I don't know. Just be aware.

I hope you find some relief soon!

Tim

Jen

4/28/10 3:08pm

I can so relate to the pain you both have described. While I've had migraines for 16 yrs, the past 2 have been hell. I get one every 4 days or so. I've been hospitalized twice in 9 months...each time for a couple of days while I received a DHE IV treatment. I've been on Topamax, but the cognitive side effects (and sexual ones) were really distressful. PLUS I was still getting migraines! I am also on Limictal (100mg). I've tried several other drugs and either can't stand the side effects or they don't work.

Recently, I was put on Zonegran (100mg to start) and I'm getting off the Topamax. I'm so hopeful this will work with minimal side effects. I want my life back. I'm a single mom and it's near impossible to suffer all the time with these things and try to work and be a parent.

Thank you Tim for generic drug info. I'll keep this in mind.

Good luck to you all.

Jen

SARA

1/24/12 1:38pm

Thanks so much for the positive feedback on the Zonisamide. I am now going on my 3rd week and have been feeling much better but having a hard time finding positive things about the drug.

I too have been a long time sufferer of headaches. I am 25 years old and have had headaches ever since I can remember. I used to be a soccer goalie and have had many concussions; so for the longest time I thought I must be suffering from post concussive syndrome. I thought I had Bells Palsy back in 2009 but it was misdiagnosed and was truly a stroke. A year following that in 2010 I was diagnosed with a rare brain disease called Moya Moya. The doctors don't know what to do with me, let alone if it is the cause my headaches. I had an unsuccessful bypass brain surgery but that didn't resolve any of the issues or help to answer the ever growing list of questions I have. I have tried many different drugs and none have even remotely helped to ease my headaches. So far this Zonisamide has done wonders. As I started reading about withdraw symptoms and side effects I started to get a bit scared. I have gotten to the point where I will try just about anything that my neurologist suggests, normally with the same result - or should I say no result. But my fingers are crossed.

Not only have I noticed a huge difference in my headaches, but my mood and energy levels are also much better. I also have struggled with depression and anxiety as well. So far this drug has answered so many of my prayers. Now I just hope I don't have any of the long-term cognitive issues or side effects...

Thanks again for the positive feedback!

COexmigraineman

1/25/12 1:38am

Sara, I am so pleased that you've found some relief! I hope that the zonisamide continues to provide the support that you need without an abundance of side affects.

Since my original post, several things have changed. A couple of years ago, I started having a recurrence of daily (severity 2 or 3) headaches. I increased dosage to 400mg and it did the trick.

I also got to the root of my abundance of kidney stones with the help of an amazing Denver nephrologist. I had been taking a vitamin C supplement (1000mg) for the longest time, believing that the excess would simply be excreted through the kidkeys. Unbeknown to me, the excess C waste is in an oxalate form, creating the "seed" for the formation of my calcium oxalate stones. When I eliminated the excess C in my diet, the production of stones stopped entirely. So even though kidney stone production can be exacerbated by the high dosage of zonisamide, it seems that there are certainly other factors that may be able to be adjusted to compensate.

Platelet count still borderline but stable.

Biggest news in two bites: first, now at 53, I was diagnosed with severe degenerative disk issues throughout my neck between C2 and C7. C5 to C7 are nearly fused on their own, and the rest are in pretty bad shape. Likely a major contributor to years of migraines. Physical therapy and related exercises helped a bit, but was not a panacea. I tried facet joint nerve block injections between C2 and C5 - absolutely no help at all. Then, and secondly, after all of these years, I tried acupuncture. Hallelujah! After only two weeks seeing an excellent acupuncturist with a Masters in Chinese Medicine (and herself a critical car accident survivor "healed" by Eastern medicine), I am almost pain-free. Just last night, I took the bold step in reducing my zonisamide intake back to 300mg and hope to wean myself off completely. We'll see. I know that this is a pie-in-the-sky vision, but we all have dreams. ;-)

Try acupuncture, and again, congratulations with your success so far. I wish for you a pain-free future.

Sara

3/ 1/12 8:32am

I guess my relief was only short lived :( I had about 2 months without a headache everyday. I had trouble going up to 200 mg so I stayed at 100mg but that only was good for 2 more weeks. The headaches got increasingly worse until my Dr had me go off the med. The only problem is he didnt try anything else so the problem that I started out with is still there. But I can deal with the headaches as long as they dont get seviere. I am just frustrated and tired of going to the Dr. But I have faith in God and I refuse to let this define me.

I am glad that you have taken care of the kidney stones. Boy I have heard that those can be worse that birthing a child ;) I have done acupuncture in the past with a wonderful chiropractor. He got rid of my headaches for about 6 months! He was shifting the plates in my skull and It changed my life. But with the plate in my head from my brain surgery I am afraid to go back and it would be treated as a "special case" and therefore would cost more $$$. I might go back and just see if we can do the acupuncture again. I cant see where that would hurt. Anyhow I am glad that you are able to start backing off the med - that is wonderful news. Good luck and I hope you can continue to be pain free. Thanks for the responce.

Sara

strongcook

2/12/12 8:36pm

Thanks for posting this. Long story sort of short, I was just diagnosed with "New Daily Persistant Headache" Disorder, which is similar to chronic migraine except you can pinpoint exactly when it started. Which for me was 38 weeks of pregnancy. Prior to being pregant I had migraines, maybe 3-4 a month. After 38 weeks, I started getting them daily. I breastfed for 7 months and then started with meds. I was orginally on Topamax and Zoloft. I was basically bedridden for 3 months. I have never been so depressed in my life. I've been so scared with no idea of what happened to me. I had been working with the nurse practioner at my neurologists office and out of frustration went to my primary who sent me to physical therapy and also ordered an MRI. MRI came out normal, however the physical therapist thinks I have a disk bulge from an old injury in my neck and my posture is terrible from pregnancy. Plus to top it all off, I'm walking around with an extra 30 lbs on my frame because it just wouldn't come off even with exercise. And trust me exercising is hard when you feel like this. Either way, I finally think I got to the nurse practioner because the head neurologist finally called me last week and promised he would "leave no stone unturned" and gave me the above diagnosis. He also switched my drugs that evening to Wellbutrin and Zonegran. He called it a lateral move, and I know it was risky because it gave me no time to detox from the other drugs. I am on day 3 of 200 mgs of Zonegran at bedtime and 175 mg Wellbutrin in the morning. I feel maybe 40% better. But that's something. To be able to be up and talking and walking during the day is a big thing. I still have a lot of fear I need to get over. I'm seeing the neurologist this week and trusting he'll adjust my meds if needed. I was really losing hope. I'm normally a very up person but 10 mos of chronic pain plus being overweight has really thrown me over the edge. I'm going to see a pyschiatrist who specializes in chronic pain so I can get a handle on this and I've also been using a light box because I live in Upstate NY where winters are long and dark. This will be my second week of physcial therapy. Honestly, I was starting to lose hope and resign myself to pain. Reading your success is calming me down and I know I just have to take it day by day. I guess I didn't really give you the short version! Thanks for reading!

COexmigraineman

2/14/12 12:37am

I'm so sorry to hear that you've endured so much with your headaches. It must have been incredibly painful and difficult being a mom and caring for others when you needed significant care yourself. I have so much respect and admiration for you!

It sounds as if you've made it through the most difficult period and have found some great doctors who are dedicated to find you some relief. The Zonegran is a good start, and based upon what I've read here on this site and elsewhere, your doc is wise to have you on an anti-depressant as well. Physical therapy for the disc issue is a great addition: if the disc issue is contributing to the pain, a great therapist may be able to do wonders to non-invasively reduce or eliminate related pain. My wife had two herniated discs in her lower back around Thanksgiving 2010 and could barely move, and a few months of PT with exercises, carefully regulated spinal traction, heat/cold, and electrical stimulation resulted in a 100% solution. I hope this works well for you as well.

The acupuncture that I mentioned above, while not a perfect solution, certainly helps for pain control. For 25 years, I steered away from this option for some reason (skeptical, perhaps). Now I wish I had tried it many years ago. It's one more thing in the arsenal that can provide some relief, and if it gets you from 40% to 50% or more, it's certainly worth trying.

Do you use any heavy-duty migraine meds that help? For me, Imitrex injections or Amerge tabs eliminate the occasional headache, as long as I can close my eyes and relax for 45 minutes or so after taking them. If I don't relax, the meds don't usually work.

I'm proud of you for getting through the toughest times! Keep trying. Hang in there.

Tim

strongcook

2/15/12 11:43am

Hi- I just have regular migraine meds which normally don't work for me and the occassional percocet as a "rescue medication". I am seeing the neurologist tomorrow and that is on my list of things to bring up. So far day 5 of Zonegran is so so, I spent all day yesterday in bed with a migraine and am trying to take it easy today. I'm wondering if my body just needs a few days to adjust to the new meds since I switched so rapidly? Luckily the baby is napping and I can put my feet up. Hopefully I'll have more answers tomorrow.

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