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Kathy W.	Jul-21-05, 07:20 PM (CMT)
"Zonegran"
Does anyone take Zonegran for prevention? If so, would you mind sharing your experience with me? Thanks! Kathy
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RE: Zonegran, Richard, Jul-22-05, (1) RE: Zonegran, RollTide, Jul-22-05, (2) RE: Zonegran, lesherb1, Jul-22-05, (3) RE: Zonegran, TeriRobert, Jul-27-05, (4) RE: Zonegran, eskeen, Jul-27-05, (5) RE: Zonegran, TeriRobert, Jul-28-05, (6) RE: Zonegran, eskeen, Jul-29-05, (7) RE: Zonegran, TeriRobert, Jul-31-05, (8) RE: Zonegran, eskeen, Aug-01-05, (9) RE: Zonegran, TeriRobert, Aug-01-05, (10) RE: Zonegran, eskeen, Aug-01-05, (11) RE: Zonegran, TeriRobert, Aug-02-05, (12)

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Richard	Jul-22-05, 08:06 AM (CMT)
1. "RE: Zonegran"
When I ran through every known preventative, I gave Zonegran a try for many months. I had no side effects but no notable relief, either. Hang In There! Tieni Duro! Non Mollare! Tiens Bon! Ne Laches Pas! Richard
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	RollTide	Jul-22-05, 09:53 AM (CMT)
	2. "RE: Zonegran"
	I tried it a few years ago and it was working really, really great for me. But, I started having one of the rare side effects of all-over bruising. I had pencil-eraser sized bruises all over my entire body that started about 3 months after I was on it. It was scary. So, my neuro took me off and I've never tried it again. But for the 3 months I was on it, it was working very well. RT
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	lesherb1	Jul-22-05, 04:09 PM (CMT)
	3. "RE: Zonegran"
	I was on it for a few months but didn't notice any benefit from it. £eslie
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TeriRobert	Jul-27-05, 09:37 AM (CMT)
4. "RE: Zonegran"
Hi, Kathy. I take Zonegran as part of my preventive regimen. I started at 50 mg every other day, and slowly tapered up to 400 mg per day. With each dosage increase, I did experience a mild stomach ache for a few days, but it ceased as my body adjusted to the medication. The only lasting side effect I notice is a slight decrease in appetite. Alone, Zonegran wouldn't be enough to control my Migraines, but we've never found ANYTHING that would be. When looking at the neruonal stabilizing agents, aka antiseizure meds, as far as I've been able to tell from my research and from what I've been told by doctors, Zonegran has one of the lowest side effects profiles. I had such a horrid experience with another drug in this family, that I was reluctant to try another until I was assured that the potential for adverse reactions was much lower. Hope this helps! Teri
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	eskeen	Jul-27-05, 09:58 AM (CMT)
	5. "RE: Zonegran"
	Hey Teri, Was it Topamax? Just curious...A LOT of people seem to experience side effects, me included, but it seems to be working to some degree or another; I guess even w/the side effects I'd rather be where I am than not...*shrugs*---some quite severe and/or they get to the point where it gets to be too much---w/it and have to quit. Hope you're having as pain free a day as possible and (((HUGS!))) Erin *yawns* P.S. My migraines are still kickin' my butt but hey, beggars can't be choosers...*SIGH* Something's changing about them to some degree...guess it's the Topamax (I *can't* say it's my abortive or my Zanaflex b/c I've been "prohibited" from taking them---ROFLMAO---I'm a rebounder, apparently; (*rolling my eyes*), *and* I was put on Frova for a "trial period" and titrated up on my Topamax from 100mg to 150mg (which will consist of 1 100mg tablet and 2 25mg tablets, when I get them filled; for now I'm just finishing my 100mg "regimen")). That’s until I get my Frova Rx (re-written one) in the mail and my Mom and I sit down, figure out/double-check the costs of everything, and go from there…which means we mail in my FIVE! Rx’s to Caremark, our Rx provider. This should be "fun". Oh, and I like to say that I've been "BANNED" from taking my other meds...LOL. ;-P 22y/o "former" 30 wker(2#2oz., 10 1/4" long), Grade III IVH(brain bleed), hydrocephalus as a result, 12 surgeries, last revision 4/20/05, MIGRAINES dx'd 5/13/05, RN student, Dad passed away 10/3/03 @ 48y/o...
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	TeriRobert	Jul-28-05, 01:41 PM (CMT)
	6. "RE: Zonegran"
	Hi, Erin. Yes, it was Topamax. I really gave it a good try -- nine months, but the cognitive side effects made it impossible for me to continue. My concentration was so bad I wouldn't even consider driving. Even once I had the research done, writing a short article could take me two full days. I'd walk across a room to do something, but forget what it was. It just made it impossible for me to function, AND it wasn't helping my Migraines anyway. That's ok though. My current regimen just gave me almost four months without a Migraine before the extreme weather changes and thunderstorms here caught up with me and triggered a Migraine. So, I can't complain. What I wish for everyone is to find a regimen that gives them as much pain-free time as mine gives me. hugs, Teri
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	eskeen	Jul-29-05, 07:45 PM (CMT)
	7. "RE: Zonegran"
	Hi Teri, First of all, (((HUGS!))) and I had forgotten about your post (as well as my response) and then I decided to go back through the pages, headline by headline and voila! I found it! ;-P *SIGH* Maybe it's the Stupimax. Oh my gosh! (Did I actually--GASP!--say that!?) I just don't know...I HATE having ST memory problems and up until fairly recently, it had not seemed *nearly* as bad as in years past (I guess). I'm just SO tired, SO frustrated, SCARED!, etc. *But*, the Topamax is helping, to some varying degree or another. I *still* get migraines EVERY day, same as usual in every degree, but some things seem to change/be changing. I just wonder...(about A LOT!). I wonder about my future, my schooling, future career, my *future*--in general, etc. Am I crazy...? I.E. to be thinking in this regard/to be thinking about (all) this? I just... Anyway, thanks for the response and I'm sorry it didn't work out for you . *SIGH* What's your current regimen, if you don't mind my asking? Take care, (((HUGS!))) and hope you're having as pain free an evening as possible! Erin P.S. Congrats on the lengthy time without a migraine (and sorry it didn't last/last longer)! Woo hoo!!! I also wish that everyone could find a regimen that worked for him or her; it's SO frustrating (and *I* get frustrated/am frustrated for others!)! GRRR! :-/ 22y/o "former" 30 wker(2#2oz., 10 1/4" long), Grade III IVH(brain bleed), hydrocephalus as a result, 12 surgeries, last revision 4/20/05, MIGRAINES dx'd 5/13/05, RN student, Dad passed away 10/3/03 @ 48y/o...
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	TeriRobert	Jul-31-05, 11:08 AM (CMT)
	8. "RE: Zonegran"
	Hi, {{{{{{Erin}}}}}}! Of COURSE, you're tired, frustrated, and scared. I'd be more concerned if you weren't. And, no, you're ot crazy to be wondering about your future. Here's the way I see it... We have a neurological disease -- Migraine. It's never a good thing to have a disease, but as diseases go, it could be far worse. At least with Migraine disease, there IS a great deal we can do so that we're controlling the disease rather than it controlling us. It can take a lot of time and patience to get there, but with all the meds and combinations of meds that can be used for prevention now, good preventive regimens can be found for 95-98% of Migraineurs. That puts us back in the driver's seat where WE'RE in control. Topamax wasn't the right medication for me, but that's ok. I've still managed, with the help of a great Migraine specialist, to go from averaging five days a week in bed with Migraines to getting three to four pain-free MONTHS between Migraines. The regimen I've ended up with is: Verelan PM, 400 mg at night(verapamil) Effexor XR, 300 mg Zonegran, 400 mg Coenzyme Q10 softgels, 300 mg Magnesium oxide, 1,500 mg Vitamin B2, 400 mg Because preventives weren't working and I could identify my triggers just 50% of the time, Dr. Young also suspected that I had a condition called Pseudotumor Cerebri. Simply put, the body produces too much cerebrospinal fluid, making the pressure in the head too high. That can trigger Migraines. The only sure-fire way of dianosis is to meausure the pressure with a spinal tap. He did one, and my pressure was high. He drew off enough fluid to put it into "normal" range so we would know if the pressure had actually been too high for me. Immediately, the 50% of Migraines that I hadn't been able to identify the trigger for stopped. I take Diamox daily to control that condition. It took about three years of traveling to specialist appointments an eight-hour drive from my home to get to this point, but it's been worht every mile and every minute. So, hang in there! I truly believe you can find this kind of successful regimen too. Teri Robert, Ph.D. Migraineur, writer, patient advocate www.helpforheadaches.com www.headaches.about.com teri@helpforheadaches.com
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	eskeen	Aug-01-05, 08:42 AM (CMT)
	9. "RE: Zonegran"
	Hi Teri, First of all, thanks and HUGS!!! Also, thanks for reassuring me (especially--LOL: Laugh Out Loud-- that I'm NOT crazy). SIGH...anyway, living with TWO neurological diseases is even more difficult/frustrating/etc.--as you can certainly attest to--and what makes ME even more frustrated--and MAD, for lack of a better word, I guess--is that MY migraines are caused by something that is supposed to HELP me--i.e. the two surgeries I had. GRR! Oh well...it could be worse, YET...anyway, I'm glad that even though Topamax didn't help you, you have a great migraine specialist AND a regimen that works for you. Woo hoo!! I've heard of PTC, have wondered if maybe I have it, but with ALREADY having hydrocephalus, it just...doesn't...well, anyway, I know it IS possible for a shunted individual to develop ACM (Arnold Chiari Malformation), but as to whether one can develop PTC is just...I don't know...SIGH. I was on Diamox--and don't recall having ever been on it before in my life--in April for intraoccular pressure, or IOP, swelling which is also termed "papilledema"; it is swelling of the optic disks)as well as Decadron for increased ICP (intracranial pressure). Unfortunately because they are both steroids, they BOTH shot my blood sugars SKY high and I had to receive insulin EVERY day I was in the hospital--and THAT was with being on my oral antidiabetes medications as well. Both steroids worked though, but they caused side effects, which I didn't notice/seem to have until AFTER I got home from the hospital. SIGH...they still seem to be evident now (to a degree). Do you remember what your pressure was from the spinal tap? How long have you had PTC now? Is the Diamox working well for you? Any side effects? Sorry for all the questions... I sent off my five prescriptions to Caremark Saturday so now it's just a waiting game and I'll be SO glad when they come back, mainly because I am interested in starting the Frova and seeing how that works. Take care and again, HUGS!!! Erin 22y/o "former" 30 wker(2#2oz., 10 1/4" long), Grade III IVH(brain bleed), hydrocephalus as a result, 12 surgeries, last revision 4/20/05, MIGRAINES dx'd 5/13/05, RN student, Dad passed away 10/3/03 @ 48y/o...
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	TeriRobert	Aug-01-05, 09:30 AM (CMT)
	10. "RE: Zonegran"
	Good heavens, Erin! We're both too complicated for our own good. <g> One reason we chose Diamox to treat the PTC is that I already have advanced glaucoma. We called my ophthalmologist, and the three of us chose the best medication for the PTC. Diamox is also used for Glaucoma. Glaucoma is one reason I'm paranoid of every Migraine I get. Migraines increase IOP, and I can't afford to have mine raised, AT ALL. I've had the last resort microsurgical trabeculectomy surgery on both eyes already. Have lost 50% of the vision in my right eye, 15% in the left. Migraines and increases in blood pressure can both increase IOP, so I'm ultra cautious about both. Diamox is a sterioid?? Heavens. I'm going to have to do some more research on that now. I have type 2 diabetes also, but it's very well controlled with metformin. My last Hemoglobin A1c was just 5.7. My pressure from the spinal tap was 230. We don't know how long it might have been that way, but it was diagnosed in 2001. Yes, the Diamox is working quite well, with NO side effects. Don't worry about asking questions. That's how we learn from each other, and I don't mind. I wrote a book that's coming out in November, and it's all in there. My editor thought it was important to share my own story with readers. I hope the Frova works well for you. It should certainly be different since it's half-life is so much longer than any of the other triptans. Did your doctor tell you that its half-life is 26 hours? Hugs to you, too! Teri Robert, Ph.D. Migraineur, writer, patient advocate www.helpforheadaches.com www.headaches.about.com teri@helpforheadaches.com
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	eskeen	Aug-01-05, 11:35 AM (CMT)
	11. "RE: Zonegran"
	WOW Teri! First of all, are you sure we aren’t TWINS? LOL! Sheesh! I am also a Type 2—have been since August 3, 2004. I am ALSO on Metformin--2 in the morning and 3 at night) but I am also on Glyburide and I judge that as need be—essentially two in the morning and two at night. I experience hypoglycemia more than hyperglycemia and BOY do I feel it when it hits. More often times than not, it occurs at night and I am fortunate enough to have been able to wake up (due to the symptoms—severe shakiness, severe dizziness, unable to move or speak, etc.), know AUTOMATICALLY what it going on, check my sugar just to get an EXACT reading, and treat accordingly—I keep a big bottle of the 50 glucose tablets on my bedside table). I also have a MEDport carrying case that I keep my meter, lancing device, lancets, 10-pack of glucose tabs., etc. with me at ALL times but boy is it BULKY --it takes up the majority of my purse. I didn’t know that migraines increase IOP, but it makes sense/wouldn’t surprise me. HUGS! I am SO sorry about your vision problems/visual loss. I had vision problems related to my hydrocephalus as a child, and of course, I am nearsighted but that is no surprise as my Mom is too--and my Dad was as well. WOW! APPLAUDS! LOL. I keep forgetting to ask what my EXACT numbers are in regards to my A1c—for example—but I think I’ll ask when I go next week for my next diabetes appointment. The time before last it was 6.4. At the time of diagnosis it was 12, which is NO surprise (“typical”, I guess you could even say). I know that statistically, “they” (experts) want diabetics to be at <7 and that is where Dr. Gage wants me to be. I’m happy with that. He also wants my blood sugar to be within the 80-126 range, but doesn’t give me the “nit-picky” of “before breakfast, lunch, dinner” or “at each meal”, etc. That would make me a little crazy. LOL. Wow! So you’ve had PTC for a little while now. I bet it has made things “interesting”. I am so VERY glad the Diamox is working for you and that you have NO side effects! Woo hoo! <grins> And thanks for letting me ask questions. Wow! Cool! I am going to look into possibly getting a copy of your book when it comes out/when I get a chance. I have a Books-A-Million that is local—although I was ALWAYS partial to Borders, but liked going to a Barnes and Noble that’s about a 45-minute drive away—and my card ran out, but we’ll see…<smile>. I hope the Frova works too; <crosses fingers>! No, the resident I saw July 20 didn’t say anything about it--but had just mentioned briefly about the possible chest discomfort, flushing, and that it was similar to Maxalt—but I, of course, took it upon myself to read up on it. Being a nursing student, living with three chronic conditions, etc.; I’ve made it a “habit” or whatnot. Take care! <Hugs> Erin P.S. Since I don’t expect Dr. Englert—-the resident—-to “educate” me/do any patient teaching, I will take it upon myself to educate myself and even my family about my medications and whatnot. SIGH 22y/o "former" 30 wker(2#2oz., 10 1/4" long), Grade III IVH(brain bleed), hydrocephalus as a result, 12 surgeries, last revision 4/20/05, MIGRAINES dx'd 5/13/05, RN student, Dad passed away 10/3/03 @ 48y/o...
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	TeriRobert	Aug-02-05, 07:48 AM (CMT)
	12. "RE: Zonegran"
	Erin, No, I don't think we can be twins since I'm 51. LOL!! Boy, you have it tougher with the diabetes. For the first five years after my diagnosis, I controlled with nutrition and exercise only. Now I take two metformin tablets after dinner. I'm nearly obsessive about glycemic control because my father died of untreated complications of diabetes at the age of 59. If my A1c is over 6, I'm unhappy and get stricter about nutrition and exercise. Don't really know if you'd call that obsessive or paranoid. Maybe both? <g> Actually, the PTC never presented any symptoms other than being a Migraine trigger, and I would never have known about it if not for having such a wonderful Migraine specialist. He has just been super and has such a great philosophy toward treatment. Here's something he said, "Educated patients are better patients. I'd rather have a treatment partner than a dishrag." He never made treatment decisions FOR me, he made them WITH me. He'd tell me what options we had, and we'd make decisions together. He always agreed with me that Migraineurs need to be educated about this disease, our treatment, etc. We can't call our doctors every time we have a Migraine. Therefore, when we do have a Migraine, we have to make some treatment decisions for ourselves. We have to decide when to take our meds, and sometimes what meds to take, etc. Erin, you can ask me questions anytime. I kinda on a mission to educate people about Migraine disease and headaches. I go to medical conferences, read books and medical journals, work with doctors and researchers, everything I can do to learn. Then I write articles and other content for my web sites to share what I've learned. Answering questions is another way of sharing information. So, ask away anytime! If I'm busy, and you don't see me here, you can always email me at the email address in my signature. I'd never been to Books-A-Million until a couple of years ago when I was on one of my week-long trips to Alexandria, Virginia, to work with MAGNUM. There's a store just a few blocks away from their office, and I love it! Now, whenever I go to Alexandria, I spend at least an hour once or twice in that store. I don't know about the individual stores having my book, but it is listed on their web site. (http://www.booksamillion.com/ncom/books?id=3229893019517&isbn=0060766859) Most people actually have fewer side effects with Frova than Maxalt. Hopefully, that will be the case for you, too. Geeze, I miss being able to take Imitrex. I always kept the tablets and the injections here, and one or the other would always work for me. Oh, well! Can't have everything. Take care, new friend! Teri Robert, Ph.D. Migraineur, writer, patient advocate www.helpforheadaches.com www.headaches.about.com teri@helpforheadaches.com
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