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Glad you realized it was the Zonegran!
Jamie Sohn
Wednesday, June 25, 2008 at 06:25 PM -
Zonegran ,etc. and Migraines
Laura
Wednesday, June 25, 2008 at 06:47 PMI too have been on ZOnegran and also on Topamax, which is in the same family (anti seizures)- It's amazing that "migraine" specialists have also felt the "need" to compliment both with anti-depressants!
I have always felt that they want to over prescribe/over diagnose us as "DEPRESSED" when in fact we are just in pain! Often, the preventative meds are making us sicker than the migraines!!! It is frustrating to me as it seems they seem to have an agenda they want us to fit into and often have never themselves experienced the chronic pain we go through, but are willing to put us on the rollercoaster of wait and see and meds that cause havoc in the rest of our lives!!! That said..... hang tough... I FEEL your pain.... on a DAILY basis.... I try to stay positive and look for the positive with my "condition" -> it's not terminal... Enjoy your family....
re: Zonegran ,etc. and Migraines
Nancy Harris Bonk
Thursday, June 26, 2008 at 10:03 AMI don't think it is an "agenda" so much as maybe a protocol doctors follow. And you are very right, it seems often like a wait and see situation. Waiting for medications to work, waiting for the pain to stop and waiting to feel better.
But while we are waiting, we can try, to be as productive as possible, enjoy our family, friends and and have the best quality of life we can!
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Being patient with new meds
betsyb
Wednesday, June 25, 2008 at 07:02 PMHi, Nancy! Wow, do I identify with your posts about each new preventive medication you try. I tried Zonegran, too, and now don't even remember what side effects made me discontinue it. (Most of the preventives just didn't touch my migraines.) I did have decent results with Neurontin for a while, but I didn't like the zombie-like effects, and after a while with each dose level, the migraines attacks "broke through" again anyway. So after a year with some relief after each increase, I had to give it up.
I agree how horribly frustrating and hard it is to be patient, and you feel like such a lab experiment trying to find something that will give you good results. But hang in there and keep trying. My migraines transformed into chronic status after menopause, and I'm now struggling to find something that will help me break the cycle of chronic migraine/medication overuse of Imitrex and pain meds. Currently I'm trying Namenda (an Alzheimer's drug) and so far have some improvement, down to two-three migraine days a week. But I almost gave it up the first two or three weeks because of the side effects. They lessened, though, and I'm doing okay; however, I feel the Namenda might be making my moods more extreme, both good and bad -- I just remember it's the medication, and hopefully in a couple more months I can taper off of it and be out of the rebound cycle! I'm cautiously optimistic...
Stay strong and keep trying -- it's not easy but if you find something that works for you, it will be worth the efforts and frustrations.
~Betsy
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Your Courage to admit how you feel
cking
Thursday, June 26, 2008 at 12:31 PMDear Nancy:
I am so sorry your life has been such a roller coaster this year (mostly downward). I am also so very sorry you lost your best friend. It can be a downward spiral that seems to have no depths. My best friend died three years ago (age 49) from breast cancer and I sunk into a deep hole. Not because I felt I lost a close friend, but I felt the world lost one of the best role models ever to walk the earth, and that after her death the world was going to "you know where" in a handbasket.
The chronicity of your headaches that are unpredicatable and difficult to control only makes matters worse. I think you are courageous because you seem to recognize your feelings rather quickly, and communicate them and analyze them better than many of us are able to.
I am wondering if your specialist has given you a "timeline" in which to test the Zonegran, and a "contengency plan" if you feel it simply isn't doing enough. Sometimes just having some closure regarding a "trial" gives me the hope that there may be a different light at the end of the tunnel, especially when the current light isn't cutting it.
Also, regarding the depression. Yes, these antiseizure drugs can make it worse and cause the thoughts you were having. Also, for me, chronic daily severe headaches gave me those thoughts last year, when Iwas not taking the anti-seizure category. I think that chronic or severe pain--as well as certain meds--can cause those thoughts.
And finally, has your MD checked your thyroid function lately? I have hashimotos autoimmune hypothyroidism, and when I am in hypothyroid status (despite the meds), my headaches worsen and a depression sets in (plus other symptoms such as menstrul abnormalities, very dry skin, slower metabolism/easy weight gain, constipation, muscle cramps, etc). Many people with hypothyroidism don't know they have it and the acceptable levels of TSH have come way down in the past few years. Used to be a TSH of 6 was considered normal (and old fashioned MD's may still not treat at this level). However, many Endo's will treat a person with a TSH of 2 if they are symptomatic now, or have evidence of hashimotos as the cause.
I hope for you the suicidal thoughts go away for good and your meds either start helping or that you and your specialist can find an alternative SOON that brings you hope and relief. It is frustrating trying many different meds and combos, and again I'm sorry that so far the Zonegran hasn't been the perfect fit.
Hugs,
Clemmie
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Untitled Comment
Deborah
Tuesday, July 01, 2008 at 09:44 AMNancy,
I'm sorry the Zonegran hasn't worked out for you; as we know, they can't work for everyone. Just so you know, I've been on Zonegran since May of '06 and it took a year to get the results I finally appreciated; you know - relief. I still have the migraines, of course, this past week has been horrible, but as for anti -seizure meds go, this one seems to work the best for me.
I hope you find something that works for you. (oh, yeah, I currently take 400mg of the stuff)
... more Zonegran
Kelly
Saturday, July 19, 2008 at 11:31 PMI have suffered from migrained since I was seven years old. I'm now in my 40's. I started taking Zonegran in June of '06. For the first six months I almost gave up. Then I actually started to feel good, almost euphoric on most days. A few weeks ago the migraines returned with a vengance. I'm taking the maximum dosage of 400mg daily, but this one headache seems stuck in the "on" position with only temporary moments of relief from Relpax. When that wears off, the migraine is still there. I am considering an alternative, such as Donepezil (used in treating Alzheimers), so I can give my body a break from Zonegran for a while ... just long enough to go back on it again later. If anyone knows of something better, let me know. I've tried all the obvious choices (Topamax, Inderal, etc.) and am wondering if there's something new.
re: ... more Zonegran
Teri Robert
Saturday, July 19, 2008 at 11:58 PMHi, Kelly,
Have you discussed this with your doctor yet?
You have a medication that has been working well for you for more than two years. Here are some things to consider before changing meds...
• Did anything change around the time that your Migraines increased? Any possible new triggers?
• If the Migraine attack you're having now has been going on for more than 72 hours without a solid four-hour pain-free period, while awake, it's termed status Migrainous, and you need to call your doctor or go to the ER to get it broken. See Status Migrainous - The Basics, please.
• Even with the best of preventive regimens, we can have short periods of increased Migraines.
• If you stop the Zonegran, when you restart it, it may not work again. Nobody knows why that happens, but it's not uncommon.
Anyway, good luck. I hope you get back to fewer Migraines soon.
Teri
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It's awful when something we take to feel better makes us feel "different" or "off" somehow- especially when feeling that way leads to negative or self-destructive thoughts/behavior! I'm really glad you caught it now, before it became another thing to deal with!
Big Hugs,
Jamie