freeindeed Posted February 6, 2015 Share Posted February 6, 2015 In the treatment of my migraines, all other avenues have been exhausted. I already take other preventive meds: both prescription (beta blockers and low dose anti-depressants) as well as megadoses of magnesium and Vitamin B2. I drink plenty of water and avoid dietary triggers. I exercise, but I don't get the intensity level high enough to cause too much overexertion. I read Heal Your Headache, and I have been following his plan for almost two years. It seems to help sometimes, but then I go through phases (like now) where I am getting a migraine that lasts for a week. I do have both Imitrex and Maxalt to take when I do get a migraine, but there is a limited amount that one is allowed to take of each of those. I know there are many side effects of Topamax, but at this point, nothing could be worse than my migraines. If you suffer from migraines and have taken - or are currently taking - Topamax, I'd like to know your experiences. I am especially looking for positive experiences, but feel free to share your negative experiences as well. I am just hoping and praying that this is the answer for me. Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 6, 2015 Share Posted February 6, 2015 I tried topamax. I'm sorry I can't give you a positive story, though. It wasn't right for me - didn't help. I do everything you listed, but I use Axert - which helps more than imitrex or maxalt, for me. Addressing hypercoagulation has helped quite a bit. Have you been tested for that? My 4 monthly headaches are down to 2. They last 4 days each, but the Axert makes it bearable, somewhat. Quote Link to comment Share on other sites More sharing options...
Starr Posted February 6, 2015 Share Posted February 6, 2015 It worked for me but it was best if the headache was caught early. Taking another didn't stop the rebound. I found I had to deal with the headache. Take medicine and chill. Not take medicine and carry on as usual. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted February 6, 2015 Author Share Posted February 6, 2015 Spryte - No, I haven't been tested for that. I will look into it. I am nervous about taking Topamax. I start it tonight. I will also look into Axert. I tried Relpax, but it didn't work that well for me. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 6, 2015 Share Posted February 6, 2015 We talked about Topamax for my daughter but instead went with Lamictal. It has been effective here but not sure which "type" of migraines it helps the best. Quote Link to comment Share on other sites More sharing options...
Jyhwkmama Posted February 6, 2015 Share Posted February 6, 2015 Of the triptans, Frova works best for me. It takes longer to kick in, but it lasts longer (long release). I tried Topomax, but the side effects were too much to take. Of the non triptan drugs, flexeril (muscle relaxant) worked best for me when taken before bedtime. As far as diet goes, I went vegan and when I stick with it and stay away from sugar I do much better. Quote Link to comment Share on other sites More sharing options...
HollyDay Posted February 6, 2015 Share Posted February 6, 2015 Years ago, my doc was considering Topomax for me. But, after charting the headaches, food, sleep, and cycles, we discovered mine had a major hormone trigger. I was getting migraines around ovulation, 10-14 days later, and again in another 4-7 days. I'm sure you have considered all the angles, but thought I'd toss that one out just in case. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted February 6, 2015 Author Share Posted February 6, 2015 My migraines are triggered by hormones, certain foods and smells, and by changes in the weather. I control my diet, but there's not anything I can do about the weather. HollyDay, what do you do to treat your hormonal migraines? Do you take something to prevent them? Nothing has worked for me so far. Quote Link to comment Share on other sites More sharing options...
Tammi K Posted February 6, 2015 Share Posted February 6, 2015 I took it for about six months. We kept increasing hoping to find a therapeutic dose. But, I found some of the side effects to be extremely untenable. I was terribly aphasic and was having difficulty with mental processing. I could utter a simple sentence without losing or dropping words. And for the words I could find, I was dropping syllables or initial consonants. Even my family couldn't understand what I as trying to say. I feel so badly for you. I am where you are. And it sucks. As a matter of fact, I just had a call this morning to schedule botox. I'm out of other options. I really hope Topomax works for you. It is a really hard place to be in. Quote Link to comment Share on other sites More sharing options...
Joyofsixreboot Posted February 7, 2015 Share Posted February 7, 2015 I'm just sending hugs to all of you. My migraines are hormonal but controllable. Truly, I wish you all find relief. Migraine is horrible. Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 7, 2015 Share Posted February 7, 2015 I'm just sending hugs to all of you. My migraines are hormonal but controllable. Truly, I wish you all find relief. Migraine is horrible. This, only my triggers are mostly barometric pressure changes, lack of sleep, hormones, and certain foods. When I stopped eating gluten, I didn't have a migraine for nine months. I am now afraid to eat avocados because the last two times I ate them, I had a migraine the next day. I've done chiropractic care and twice a week acupuncture. I take Natural Calm Magnesium and B2. I don't eat MSG or artificial sweeteners. I drink enough water to float myself away. Mine respond well to Imitrex, but it (and the migraine) leaves me tired and mentally dull. I chart mine on my calendar. I had 24 last year. One week a few months ago, I had three in four days. It was so defeating. I am so, so sorry to all the people who suffer without adequate relief. I am heartbroken for you all. I have tried Maxalt, Migranex (?) and Imitrex. Imitrex (50 mg) works for me the best. I still have 24-48 hours of a hangover headache afterwards, but it aborts the acute phase of the migraine. I've never tried Topamax. I hope menopause brings relief. If migraine was a person, I would kick its a$$, for myself and for all of you. Quote Link to comment Share on other sites More sharing options...
mom2jjka Posted February 7, 2015 Share Posted February 7, 2015 Topamax had horrible side effects for me. They jokingly call it 'dope-a-max' because it makes some people (myself included) feel very out of it and spacy. I remember driving in the car one day and the light turned green, and I honestly could not remember what I was supposed to do. It also made food and soda taste off. Every soda I drank tasted flat. But the worst was that it made me feel VERY agitated and angry. I remember my girls were just toddlers at the time, and one day I was so seethingly angry with them - to the point of rage. I was screaming at them and I had thoughts of hitting them, which scared me horribly. I contacted my neurologist who told me that affected mood was a side effect. I stopped them at once and the anger/scary thoughts went away. I also tried just about every other med there is - with little effect. Sumatriptan has been a life-saver for me, but I find I have to take it immediately a the very first sign (aura), or else it's useless. Have you tried a chiropractor? I found that I had a pinched nerve in my neck, and once that was straightened out, I get migraines much less frequently now. Quote Link to comment Share on other sites More sharing options...
Hypatia. Posted February 7, 2015 Share Posted February 7, 2015 I have daily migraines along with occipital neuralgia. Topamax wasn't the right preventive for me but I'm glad I tried. In fact, I tried it twice, 10 years apart, just to give it a second chance. Quote Link to comment Share on other sites More sharing options...
heartosunshine Posted February 7, 2015 Share Posted February 7, 2015 :grouphug: No major side effects from topamax here, just a little tingling in the hands. But, it didn't completely cure the migraines. Just started chiropractic care, so hoping for some relief. Quote Link to comment Share on other sites More sharing options...
abacus2 Posted February 7, 2015 Share Posted February 7, 2015 My DH tried Topamax, but like other posters, had side effects and had to stop. A friend of mine did say it helped her, though. I second the suggestion of checking for a pinched nerve in your neck. Do you have tingling, pain, or weakness in your arms? Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted February 7, 2015 Share Posted February 7, 2015 I take Topamax prophylactically for migraines. I'm on the lowest dose twice a day. I started with once a day for a week and then went to two. For me, the side effects are mild enough to make the relief I get worth it. It did take a little while to get used to it. I felt a bit dizzy and just "off" for a few days. I stuck with it in the hopes of less migraines, and it has definitely helped me. Good luck. Migraines are truly awful. Quote Link to comment Share on other sites More sharing options...
rmtzc2009 Posted February 7, 2015 Share Posted February 7, 2015 Sorry, I don't have anything positive to say about my experience with Topamax. It has significant side effects. The hardest things to deal with was the cognitive issues & hair loss. At the bus stop once the driver (a sub) asked me for my name to identify me and I couldn't give him my name. Your mind just goes blank. Lots of trail off sentences as I was always forgetting what I was talking about in the first place. My numbness & tingling got worse the higher dose I took. It also messed with my visual depth perception. I ran into things (walls, corners, chairs) very frequently. Have you tried botox for migraines? Quote Link to comment Share on other sites More sharing options...
IdahoHomeschooler Posted February 7, 2015 Share Posted February 7, 2015 My migraines are triggered by hormones, certain foods and smells, and by changes in the weather. I control my diet, but there's not anything I can do about the weather. HollyDay, what do you do to treat your hormonal migraines? Do you take something to prevent them? Nothing has worked for me so far. Those were my exact migraine triggers :( It sucked, because here in the northwest, barometric pressure changes can be pretty frequent. I would also get a week long migraine with my period, and with ovulation. Topamax was a miracle drug for me. It didn't stop them from happening all of the time, but when I did get one it was more manageable and didn't last as long. I took it for about two years, and haven't needed it since. I get the occasional migraine, like maybe once a year. As far a side effects go, the most noticeable was the first month of taking it I could no longer tell if soda or water was carbonated. It was weird. All sodas tasted flat. That eventually wore off, fortunately, because I love carbonated drinks. The other issue I had was that my normal run of the mill mild acid reflux became quite severe, to the point that it affected my airway. It could be just a correlation and not a causation, but my reflux did improve when I stopped the topamax. Quote Link to comment Share on other sites More sharing options...
Katy Posted February 7, 2015 Share Posted February 7, 2015 I took dopeymax for cluster headaches and intractable migraine before I had kids. I loved that for the first time in about a year I could finally sleep for up to six hours at a time, when previously CH had woken me up after about 20 minutes of sleep. Other than allowing me to sleep, it didn't signifigantly reduce my cluster headaches and it did nothing for the intractable migraine. I'm certain I would not have been capable of homeschooling (or even parenting) on Topamax. I was tapered up to a medium dose for headaches (still VERY low for actual seizure issues), and I couldn't walk down the hall to the bathroom without stumbling, couldn't see into a bright light without having significant "visual effects" that were similar to bursts of colors somewhat like looking into a kaliedoscope, and couldn't remember anything, from where I left my keys to the words for something I wanted to say. I couldn't bike, drive, or do anything. I found the short-acting triptans helped if I took them at the first sign of headache, but they seemed to cause rebound headaches for me. Amerge and Frova were godsends for days I needed to be some where (weddings, etc), but I'd pay for them the following three days. Plus, triptains have signifigant heart risks. The things that helped the most in getting rid of migraines and getting back to functional levels of cluster headaches were: Treating my borderline thyroid issues. My GP found an article that suggested that borderline thyroid issues in women make you significantly more likely to have daily debilitating headaches. My thyroid levels were borderline- treatable under the "new" guidelines but fine under the "old" guidelines. With little to lose, she prescribed thyroid meds and in less than a week I was sleeping much better and having signifigantly fewer headaches. I went from disabled to going back to school and work with this one change. Eventually I figured out that my vegetarian diet was not only low in iodine, it was high in compounds that blocked iodine, so I experimented with diet change, going off the meds, and trying iodine supplements, which led to the best thyroid levels I've ever had. But that is something I'd only do with the oversight of a physician, because many thyroid issues are autoimmune issues, and iodine supplementation could potentially make them worse. Getting rid of things I was allergic to as much as possible, and treating with benadryl when avoiding allergens is impossible. I'd suspected a mild allergy to wheat for years. I couldn't use shampoos with wheat proteins in them without breaking out, for example. But other than mild diarrhea, I didn't seem to react to eating white flour products. Then I was home sick one day (on an antibiotic I didn't realize I was allergic to), watched something on TV about how white bread was poison, and bought myself a loaf of whole wheat bread. I had one sandwhich, and between the antibiotic and the two slices of bread, I broke out in hives, my throat swelled nearly shut, and I ended up at the hospital getting some shots and spent the next three days in bed with benadryl. Ever since I haven't been able to handle the slightest trace of wheat without hives, but it was a blessing in disguise because going on a gluten free diet got rid of my chronic migraines almost entirely and greatly reduced my remaining cluster headaches. It also had the added benefit of no more dark circles under my eyes. These days if there's a rain storm coming I'm likely to pre-dose myself with benadryl because I figured out that the mold count in the air causes even more headaches than fluctuating barometric pressure does. Daily caffeine and peppermint essential oil for breakthrough headaches. Caffeine is a vasoconstrictor and really helps. If I have a headache coming on, Excedrine and either an energy drink (the cheapest is one of those generic energy shots from Aldi's, I buy by the case) or some diet Mtn Dew (if I can't find an energy drink), followed by putting food-grade peppermint essential oil on the side of my face with the pain works almost as well as Imitrex but doesn't casue rebound headaches. (IE: altogether, they probably reduce a migraine in half, and knock down a cluster headache 3-4 points on a 10 point pain scale, about the same as imitrex for me). Quote Link to comment Share on other sites More sharing options...
Guest Posted February 7, 2015 Share Posted February 7, 2015 Same here....too many side effects and not enough relief. For hormonal induced headaches, I tried using clary sage essential oil. Actually...peppermint and frankincense for the headache helps me too if I catch it asap. It has helped significantly if I use it up to and during my period. Good luck...migraines suck. Quote Link to comment Share on other sites More sharing options...
J-rap Posted February 7, 2015 Share Posted February 7, 2015 We are a migraine family (5 out of 7 have it; I'm not one of them). Most have found triggers and can control them, but one daughter has them chronically. She has tried just about everything too, including Topamax. It made her feel strange and light-headed, so she stopped. Meds don't seem to help her at all. Hers seem most affected by her environment (especially weather, barometric pressure). Plus, her system is just really sensitive and hyper-twitchy, so things like smells, sounds, commotion, etc., all make them worse. Clean eating, a relaxed routine, yoga, and time alone every day to take walks or meditate (outside in peaceful surroundings) help the most. Migraines are absolutely horrible. I hope you find some relief! I think most people do eventually. Quote Link to comment Share on other sites More sharing options...
MicheleinMN Posted February 7, 2015 Share Posted February 7, 2015 I tried Topamax, but the side effects were awful! Unless I was willing to fundamentally change our entire way of living, it wasn't worth it. I am the one who makes all the appointments, teaches our children, pays the bills, handles taxes and insurance paperwork. In short I am the hub of the household, and I couldn't even schedule a simple appointment; dh had to do it. AND I still had migraines at times. My migraine pain relief meds make me spacey and emotional, but I can still function. Topamax left me feeling lost and unable to be me. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted February 7, 2015 Author Share Posted February 7, 2015 Thanks for all the comments and the experiences, both good and bad. I took my first dose last night. I am just going to see how it goes. I'll keep you all posted. Oh how I wish migraines didn't exist! Quote Link to comment Share on other sites More sharing options...
kewb Posted February 7, 2015 Share Posted February 7, 2015 My husband took topomax for a different problem and it gave him serious rage issues. It was not a good fit for him. Good luck with finding something that works. Migraines are awful. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted February 9, 2015 Author Share Posted February 9, 2015 So far it's going well. I am only taking 25 mg right now. Since starting the Topamax, I have not had a headache. Prior to starting, I had been waking up with a headache 6 out of 7 days of the last week. As for side effects, I have noticed some tiredness and minimal numbness in parts of my body. Granted I'm still on a small dose, but I am cautiously optimistic. Quote Link to comment Share on other sites More sharing options...
zimom Posted February 9, 2015 Share Posted February 9, 2015 I've had migraines for about 30 years and have been on Topamax for 10+ years. I've tried to stop the Topamax twice. I think I am on the max dose for migraines, 100 mg twice a day. My main side effect is the dopamax, word finding ability, just general feeling of not being as 'sharp' as I know I am/was when I did not take it. My neurologist also reports that it does have the effect of not being able to handle stress as well (thanks!) and in addition to Topamax my daily migraine cocktail includes a low dose anti-depressant (partly due to the side effect of the Topamax, partly for the migraine benefit). Additionally I take B2, Jigsaw Magnesium, and CoQ10. Unfortunately the frequency of my migraines have fluctuated and a couple years ago I reached the Botox for migraine criteria of 20+ a month and started the Botox regimen every three months. I tried weaning myself off my daily drug cocktail but without them, when I do have a migraine (now 4-5 a month), the intensity of the migraine is such that they can not be eliminated with Imitrex. Therefore I continue Botox and my daily cocktail of 2 prescription meds and three supplements. Slowly work yourself up on your Topamax and give it a fair chance. If you have side effects, I encourage you to just go slower at first. Oh, it will make food taste different but that can be a plus :) Quote Link to comment Share on other sites More sharing options...
mom31257 Posted February 9, 2015 Share Posted February 9, 2015 He doesn't know why, but my dad's migraines went away when he started treating reflux he didn't realize he had (the silent kind). He started taking Nexium and now takes Zantac. He's not had a single migraine since he began it a few years ago. Quote Link to comment Share on other sites More sharing options...
An Unexpected Party Posted February 9, 2015 Share Posted February 9, 2015 I take topiramate, which is the generic version of Topomax. Changed my blessed life. I do understand why people have a hard time with it, and I was a crazy lady for a good several weeks while I started it, but it made such a difference. To note, the side effects that were the hardest to deal with also settled down within two hours of taking the morning dose and they also cleared up drastically after six weeks or so. I've been on it for four years now. I do also take atenolol, which does help some with the headaches, too. But having trotted through several different anti-depressants and 3-4 different rescue meds, my current set up finally works (topiramate, atenolol, and frova for break through headaches). Neurologist actually took me off regular consult schedule unless I wanted to come in. Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 9, 2015 Share Posted February 9, 2015 I'm so glad it's going well. Fingers crossed that it continues, and this is a good thing for you. :) I wanted to say I tried atenolenol, too. Gave it a good 9 months, but really didn't see much difference. I thought it was helping at first, but then it clearly ... wasn't. My migraines are clearly related to trigeminal neuralgia, not sure if that changes the way we treat them. Keep searching for answers, and keep us posted! Quote Link to comment Share on other sites More sharing options...
HollyDay Posted February 9, 2015 Share Posted February 9, 2015 My migraines are triggered by hormones, certain foods and smells, and by changes in the weather. I control my diet, but there's not anything I can do about the weather. HollyDay, what do you do to treat your hormonal migraines? Do you take something to prevent them? Nothing has worked for me so far. First off, sorry it took a couple days to get back to the board. I took very low dose birth control pills for just over a year. Then I worked with another doc to transition to bio-identical topical HRT. The birth control pills did stop my migraines. I was low on estrogen. I know, just about everything you read on the net or in books say most women are low in progesterone. But, I was the opposite. My progesterone levels were really high and my estrogen levels were low. Their ratio was also off. The birth control pills stopped the migraines. The HRT was a bit trickier because we were adusting the dose to get me off hormone therapy. It took 3 years total to get me off all HRT. Now, hrt was for a bunch of different problems, not "just" migraines. As I aged, I needed less and less hrt. Interestingly enough, 3 months after stopping estrogen and 1 month after stopping progesterone, I had a major migraine.....But, it wasn't "just" a migraine, it was hypertension. I was later hospitalized for hypertensive crisis and put on beta blockers. I've not had a single migraine in over a year. I've had a couple auras, but none developed into a migraine. Prior to the hypertensive event, I was having lots of headaches....not migraines, but headaches. I've had very few headaches of any sort since starting beta blocker and the ones I've had, Tylenol will stop. I say all that to encourage you. IF your migraines are caused (or helped along) by hormones, that should *eventually* settle down. I'm now 52, so perimenopause caused a lot of my problems. Interestingly enough, when I took BCPs in college (endometriosis), they caused headaches. But, fast forward 25 years later and they stopped the headaches. I was having 2 or 3 migraines a month for a year before starting the birth control pills. Nothing really helped prior to that. I was 46 when the headaches really ramped up. IF you think hormones are part of the problem, then you might consider a hormone profile to try and find the problem. My doc checked a bunch of hormone related beasties. The lab report was 3 pages long. But, we develped a treatment plan and kept tweaking it as my body changed. Don't give up, keep looking for a solution. HTH Quote Link to comment Share on other sites More sharing options...
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