Scared to try Topamax: 500 day migraine

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deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 9/17/2014 5:18 PM (GMT -6)   
For those of you that haven't seen my posts: I am a 21 year old female that's had a headache every single day since April 2013. I have tried 15 medications, Botox, acupuncture, and nerve blocks. I haven't had more than 5 hours of relief in over a year. I'm not in school and don't see myself ever returning. I only leave my house a few times a week for doc appts. My life feels doomed.

When I went to my first neurologist in January he recommended Topomax but I didn't want to try it because of my sensitivity to meds. Since then I've tried every other med under the sun with no relief. I've done genetic testing that shows I have POOR SEROTONIN TRANSPORTERS. In fact the reason I have migraines now is from trying SSRIs last year. I know topomax directly affects serotonin so I'm terrified it'll worsen my already horrible anxiety and depression. My body is hypersensitive to meds and I know this one is notorious for side effects.

My only other option is Namenda. I've tried every medication and natural treatment out there. What do I do

Post Edited (deathbymigraine) : 9/17/2014 4:27:00 PM (GMT-6)


BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7483
   Posted 9/19/2014 9:57 AM (GMT -6)   
I am on 225mg of topomax and have not side effects. In the beginning there may have been some dizziness and tiredness.

Most of my meds make me tired to some extent, so I see no real difference in any side effect.

Best of luck with the med. I reccomend trying it.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Mymigrainelife
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/19/2014 7:15 PM (GMT -6)   
Deathbymigraine -

I have suffered from migraine headaches for 29 years now, chronic and nearly daily for the past several years, usually they awaken me in the middle of the night full blown with vomiting, so too late for the triptans to have optimal effect. I have tried everything out there for prevention. I am a nurse practitioner, and many of the meds for migraine prevention I was unable to take, due to needing to be be able to function with a clear mind in my job. Currently I am on depakote which doesn't prevent the migraines but initially did somewhat reduce the severity and incidence. It doesn't any longer but I am afraid if I stop it, it will be worse.

I do exercise regularly and always have, if I can keep from throwing up, light cardio exercise does help give some reprieve. I also use supplements to reduce migraines- B2 and magnesium, butterbur and feverfew daily.

The Botox injections need to be given at least 3 separate injections, exactly 13 weeks apart, before you can determine they are not effective. I have now had 3. The pattern of the injections is also crucial and individual. I was very fortunate that the first injection drastically reduced my migraines, although it gave me severe neck muscle weakness and head drop. My neurologist wanted to change the pattern the second time because of this, as a result it didn't work. In fact, I had a migraine that was there night and day for over 1 month, triptans and IV steroids didn't help. So, with my last injection almost 12 weeks ago, I made sure she used the pattern of injection from the first time and have had very good results. I also was 13 weeks to the day last time, and had a 3 week delay due to my insurance company between the 1st and 2nd injections. So be certain to time the injections for precisely 13 weeks apart.

Also, I have tried every holistic therapy there is, Accupuncture, biofeedback, chiropractor, herbal remedies, massage- none has made a bit of difference. And I am a believer in alternative therapies.

However I have had MIRACULOUS results with a book my neurologist recommended. It is called "understanding your migraine triggers". Written by a nurse who suffered chronic daily migraines and went on a quest for relief. She has gone from daily migraines that are debilitating and ruin family and social life, to perhaps once a year!

The chapter I found most helpful is on diet. I knew oranges and bananas and chocolate and caffeine are triggers for me, but there were many others I had not considered. I eat an extremely healthy diet with a lot of fresh fruits and veggies, and learned that many of those- avocadoes, nuts, dried fruits, spinach, strawberries, and yes, bananas and oranges, even salmon and shellfish, can be triggers for migraines. I never thought I would be one of "those people" on a special diet, but it has been life altering in combo with the Botox injections.

The book says you can try an elimination diet, but with so many triggers I figured I would just dive in and I cut all potential triggers from my idiot, including the vitamins I take that are made from fresh fruits and veggies. Proof positive is I have been doing this since April and 2 weeks ago for the first time I decided to try some fresh ground peanut butter to see if I could have it. Nothing but peanuts, no salt or sugar. All I had was about a tablespoon before bedtime. I was awakened in the middle of the night by a monster of a migraine with vomiting, that lasted for 4 days. We all know what 4 days in a dark room with no phone or TV or reading and pain so bad you cannot go to sleep to "sleep it off" feels like , and just praying none of your neighbors will mow their grass!

Needless to say, I am a believer in this diet thing now,and will NEVER try to eat peanut butter again so long as I live! Other triggers are MSG, nitrites (these I knew), balsamic vinegar, soy sauce, anything fermented including sourdough bread....

This book has changed my life for he better and I would highly recommend it to everyone who suffers from migraines.

It feels very restrictive at first but I just focus on all the good things I can have.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7483
   Posted 9/21/2014 12:00 PM (GMT -6)   
Welcome to the forum.

thank you for the information on the book.

On our resource thread at the top of the forum, there is a link to migraine diet.

It would be interesting to compare the diet on this website to the diet suggested in the book.

I have more issues that just MIGRAINES, however, I do find that a whole food diet, without artifical ingrediants and lots of water have aided in reducing my pain levels.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Mymigrainelife
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/21/2014 8:05 PM (GMT -6)   
Your resource lists foods that are all also identified in the book, but the book is more thorough and exhaustive. As mentioned I also eat a whole food diet, however, many fresh vegetables and fruits are triggers. Remember, poison ivy is a plant whose exposure can have very nasty consequences; the same is true for some fresh things that can trigger migraines.

Be well,

Rebecca

Mymigrainelife
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/21/2014 8:36 PM (GMT -6)   
Migraine: Identify Your Triggers, Break Your Dependence on Medication, Take Back Your Life: An Integrative Self-Care Plan for Wellness [Paperback]
Sharron Murray MS RN (Author), Dr. Mao Shing Ni (Foreword)

CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 9/30/2014 9:50 AM (GMT -6)   
My first bout of chronic migrainse was also from zoloft, however I've used others that I was able to tolerate better, without the added migraines. During that first chronic stretch (before I figured out that it was the zoloft causing them) I did try Topomax and I didn't do well on it. I'm also pretty sensitive to meds, often the lowest dose is too much for me. I ended up having word memory issues (which still persist), but what pushed me to stop taking it was when I started having hallucinations.
Julie,
Counting My Spoons - Living well despite chronic illness.

Fibromyalgia, Migraines, Cluster Headaches, Endometriosis, Hypothyroid

countryhearts
Regular Member


Date Joined Aug 2012
Total Posts : 271
   Posted 9/30/2014 4:46 PM (GMT -6)   
I am on Topamax and not had an ounce of trouble.

Trudy077
New Member


Date Joined Sep 2014
Total Posts : 6
   Posted 9/30/2014 8:43 PM (GMT -6)   
I am just starting my 3rd week of Topamax and honestly don't believe it is doing anything for me. Is this something that needs time to build up in your system or should it already be helping if it is going to?

waygookinhanguk
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 10/4/2014 5:57 AM (GMT -6)   
Hi Trudy,

Topamax does not work for everybody. I'm one of the unlucky ones in that respect but I'm glad it is helping other people on this thread. Sometimes drugs can take a few weeks to work. I know how annoying this can be to read/hear as I get fed up of it myself, but stick with it a little more and wait and see. I know it's a pain but it's worth persisting a little longer to be sure, if only to eliminate medicines that don't work so you can work towards finding an effective remedy. Good luck :)

jules80
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 10/16/2014 4:34 PM (GMT -6)   
hey .. i started topirimate dec. last year. i only went up to 100 mg AT FIRST it totally helped with my migraines. (I had 2-3 migraines a week that lasted 24-72 hrs. non stop maddness!!! ) My dr started me right off at 100mg. That was intense.. I don't recommend it.once the side effect chilled out and they were pretty hard for me. My hands would tingle..the feeling you get riiight before a limb falls asleep, My cognitive prowess was impeded.ha!! Topomax made me sound like a drunken child at first then just a consummate dumb blonde. I lost the ability to "taste" carbonation. amongst a bunch of other stuff..

It worked great until it stopped working. booooooo...The longer i was on it the less it worked and the less desirable the side effects were. I'm now weening off the drug.My dr suggested a higher dosage but i was reluctant. I work with the public all day.. i didn't want to be groping for words or loosing my train of though mid sentence any more than i was. I also was getting moody and snappy. did not dig that..
Now im almost off topirimate. 7 more days. You have to ween off or a bunch of gnar can happen. My head is less cloudy from the meds. More cloudy from migraines.. which are back but not full tilt yet ..

good luck on your adventure !!

Caffeina
New Member


Date Joined Aug 2014
Total Posts : 2
   Posted 10/28/2014 6:10 AM (GMT -6)   
Thank you for recommending that book, I will certainly try it. Has anyone had any positive experience with any natural treatments ?

Thanks

Claudia

peachespeachespumpkinseed
New Member


Date Joined Nov 2014
Total Posts : 6
   Posted 11/10/2014 12:31 PM (GMT -6)   
I'm 53 years old but have been getting migraines since 1981 when I was 20 years old and pregnant with my first child. They just continued to get worse over the years. Excedrin worked for many years, but then I started having a headache 24/7 with migraines nearly every day or at least 3-5 times a week and Excedrin didn't touch it.

I went to a neurologist, had a CT-scan, and kept a migraine journal. The neurologist prescribed Topomax, but I only took 3 because the list of side effects scared me to death. I can't recommend it.

My worst triggers are smoke, lights, chemical smells, perfumes, and barometric pressure. I avoid smokers like the plague since I get the worst migraines from their smoke. I once had a 5-day migraine where I could do nothing but lay in bed and missed 3 days of work after spending maybe 10 minutes in an office with a lit cigarette burning in an ashtray. I cannot tolerate any exposure to smoke, even if it's just on someone's clothing. Something in my head immediately starts to swell and throb.

I've tried tons of different meds and 2 years ago finally got some true relief. I still get the occasional migraine, but they no longer rule and ruin my life. I've been taking Verapamil SR 360 mg. daily for several years to prevent them but it doesn't do the job by itself. I have fibromyalgia and take a low dose of Amitriptyline 25 mg. at night for pain and to help me go to sleep. I started taking a 2nd dose during the day 2 years ago because it worked so well for pain. The unexpected "side effect" has been that the 2nd dose got rid of my migraines! It makes me sleepy and makes me crave carbs and gain weight, but it's worth it to keep from having a migraine all the time. For those times when I am exposed to one of my triggers, I take Maxalt. If the first one doesn't work within 2 hours, I take a 2nd and that usually does the trick, but I'm so very thankful that I don't have to take them all the time like I used to.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7483
   Posted 11/10/2014 1:04 PM (GMT -6)   
Thanks for sharing Peaches.
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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