EVERYDAY MIGRAINES

I really need help and some advice from others. I suffer with everyday migraines....it is completly driving me insane.!
My neurologist now has me on "Topamax" 150mg, I have been on it for 6 months and its not working. They are now saying that Pain Pills are the worst pills for a migraine, they are saying that it increases the pain. So what in the world am I supposed to do??? Its destoying my social life it seems.

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Hi Survivor22,

Daily migraines is not normal. I've been struggling with them myself since July 2. They can cause other neurological problems.

You need to see a migraine specialist in order to determine root cause. Here is a list of specialist http://www.migraines.org/help/clineast.htm#midatlantic. Are you able to get to Alexandria, VA to see this group http://www.migraines.org/help/clinnhtc.htm?

I know it may be out of your way, but let me tell you that as an 11 year migraine suffer I finally took the bull by the horns and went to a migraine specialist. She is amazing and taking a different approach to all of my problems than the other neurologist. It's amazing to me how neurologist really do not understand migraines (unless they specialize in it).

Be well, Tonya

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Hi Tonya....youre message really meant alot to me. I looked up on going to a Migraine Specialist, Alexandria is only about a few hours away from where I live, it's defintly worth the drive. Thank you so much!
I went to a doctor in Charlottville VA at UVA who treats patients for migraines 3 weeks ago and all he did was upgrade my Topamax to the highest miligram and he said if that didnt work then he would put me on Depakote. He said Depakote and Topamax are supposed to be the best migraine medicines there are. But I am on the Topamax now and I cant stand it, its not working at ALL. I've been on the Depakote before and that worked alot better. So I go back again to the neuroogist in 2 weeks to try a different medicine. I dont know what he will do.
What medicines do they have you on? Do they have you on any medicine for when the pain strikes?

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Hi Survivor22,

I take Depakote 1000mg for my migraines and seizures and Verapamil 180mg for my my migraines and Prinzmetal Angina (cardiac vaso-spasms). I don't take anything when the pain strikes as nearly all medicines are vasoconstrictors, which I can't have as it would cause me to have a heart attack.

I was in the hospital in August for seizures. I lost my intellect last April. I have confusion days, left side problems (such as balance, coordination, paralysis, weakness), sensory problems, speech problems and more. And yet, for 6 months all the doctors attributed everything to my migraines. My migraine specialist though is the first one who said "hum maybe migraines are secondary" (being triggered by something else). She said it's not normal for me to have daily neurological and migraine problems especially when medicated.

My point is it may be worthwhile for you to seek another opinion just to make sure that something else is not going on.

I'm glad the clinic is not that far away. That website I sent to you has a ton of great information on it. There's also a community there that is well monitored and has active participants.

I'm off to the hospital today for MRI with contrast, MRA, and some more blood work.

Be well, Tonya

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hey tonya how did youre test go?..mri..& mra?

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The MRI and MRA was miserable for me though as it was soooooo loud. I find out the results on Feb. 5. I have a spinal tap tomorrow (yuck). I find out the results of my cognitive test on Feb. 2.

Thanks for asking! Tonya

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For around 14 years now, I have been treating my migraine pain with fioricet. I take it just when I see the migraine headache is coming. I know it is coming when I get auras and after 10-15 minutes, it’s gone. I observed that if I take it after that period, the pain med doesn’t work that much. It’s been reliable for me for years, though so I do recommend fioricetfor those who might be regular sufferers of migraine.

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Hi survivor22,
I've had migraines for the past 40 years, and decided that the only thing that would make them worthwhile would be to share what I've learne personally about them. Things to eat and not eat, as well as meds. to take and not take. These are my own personal experiences that I put on my website. I'm not trying to make money, just trying to share:http://suekenslow.tripod.com/aaawomanshealth/

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I just wanted you to know IM praying for you as I battle these almost daily too. Ive taken topomax in the past and it didnt work for me either. I take excedrin migraine when I feel them coming on because its all I can affford without any insurnace now. It masks it but doesnt really help.

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I used to get everyday migraines myself and my migraine specialist performed a Occipital Nerve Block. I was amazed how the migraine that I had in the office cleared up in minutes. The Occipital Nerve is a little nerve on the back sides of your head. What ever it does it really works. My migraines have reduced a lot. I still get some but not everyday but maybe once a week now. That I can live with. Another problem is that if you use your migraine meds everyday or Tylenol you will get that migraine right back! It will rebound even with the migraine rx medicine (maxalt, immitrex) and if the pain pills have the acetaminophen in it - it will rebound the migraine as well. They do make pain med with ibprofin instead.

I am really lucky to have the best specialist who has worked with me!

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I also have epilepsy and migraines I ahve been to many neurologists and it's not that they're not helping but, its a trial by fire kind of thing. I'm going to defiately look into the migraine doctors. Thank you for that. Also, I've never heard of verapamil what kind off med is that. Is it a pain med and how does it work?

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to anyone with migraines i do know how aweful they can be. i always got sick to my stomach for days and had a migraine about once a week.
i started taking an herb called FEVERFEW and i only occasionally get migraines now. i take one in a.m. & one at bedtime (380mg.) i used to get it at GNC but found it much cheaper online at THE VITAMIN SHOPPE. you should ck w/yr Doc if it's ok w/other meds but i've never had side effects or any drug incompatability.
good luck

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The apartment manager where I live has migraines about 4 days a week she said. She found a topical OTC product online and has had amazing success with it. She told me she now rubs it on when she feels her pain coming on and it snuffs it out. And she said she doesn't take her pain prescription anymore.

She told me I could pass this on. It has also worked for me on two occasions where I have had a hangover headache,,lol

www.erase-pain.com

Bob
Plano, TX

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Hi Survivor. Topomax did nothing but cause a whole new set of side effects. I am a patient at Diamond Headache Clinic in Chicago (13 years now) I'm a little odd in that I have syncope (blackouts) and these pros at DHC don't give up on you. Go to their website diamondheadache.com Dr. Seymour Diamond is known as the "grandfather" of migraine care - he started it all years ago. Give them a try. Believe me I've been on all the meds. Most folks can be helped it might take some time to figure out exactly what helps you but I promise they won't give up on you.

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I am so glad I found this website! I deal with 3-4 migraines a week, and that's a good week. For the most part I keep a daily migraine. I live in Kingsport Tn there isn't a headache clinic near by. I have seen the same neurologist now for several years, but he hasn't been able to help me. I have had brain surgery for epilepsy. A right temporal lobe lobectomy in 2002. I have been seizure free other then a few auras. Now these migraines are taking over my life. I can't plan anything for not knowing how I'm going to feel. I'm light sensitive, noise bothers me and strong smells.

Right now I take fiorcet, zanaflex, lamictal, klonipan, and vitamins. Nothing is touching the pain. Hoping and praying for a cure. WIsh I lived near a headache clinic, but not sure if my insurance would pay for it. Has anyone tried Botox for your migraines??

Best of Luck,

Cindy :)

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i went 2 a headache dr in which he didnt help at all just trying 2 get more money out of me .he put me on topamaz &presidone i didnt take because it would do more damage 2 my health then good plus i read tha side effects.i dont know who 2 turn 2 cause it seems like no 1 wants 2 help.i guess tha best way 2 treat headches is going natural.

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I am new to this sight and look forward to communicating with others who are experiencing the curse of the migraine. I am a 58 year old female and have had migraines since I have been 21. I have them daily. I live in Michigan and have been to 3 headache clinics in Michigan that could not help me. The Michigan headache clinic in Ann Arbor put me on 25 pills the first day. It was a 2 hour drive there and I went back and forth for 6 months, then I told them I wasn't getting any better and asked if they had a plan. They told me then I was in the small percentage of people they couldn't help. It was not a good experience there! I also went through 2 other headache clinics which were much better, but again they couldn't help me. I visited Mayo Clinic years ago and they told me it was from my periods and prescribed medication for menstrual cramps that might help migraines-NOT! I also have a condition called GLOSSOPHARYNGEAL NEURALGIA, basically it is damage to the ninth cranial nerve, so to keep it under control I take 100 MG of Topamax. My primary care doctor suggested I double this to see if it would help the migraines. However, it has not. I take Fiorinal, usually daily as this seems to be the only medication throughout the years to help. For the more severe migraines I take 10mg of Maxalt. Like many of you, I am light and noise sensitive with my migraines. The pain is always on the left side and I experience pain behind my left eye. I am seeing my neurologist in June about my migraines and glossopharyngeal neuralgia. I intend to ask him about Botox injections for the migraines. Has anyone tried this?

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Hello - I am so very sorry that you too are dealing with these daily migraines. I started getting Migraines 20 years ago and they hit 2-3 times per year. Roughly 11 years ago they started coming 2-3 times per month and would last 7-10 days. 5 years ago I woke up with the tell tale signs of the migraine but this turned out to be nothing normal. I have had one continous migraine for the last 5 years and have seen every type of doctor including Migraine specialists. I have tried upwards of 80 different medications over the last 5 years including botox but nothing has worked. After trying all of the "normal" medical treatments I have tried the naturalpathic medicine as well but this too did not resolve the issue.

I have come to terms (after lots of counciling) with the diagnosis of Chronic Daily Migraine Disease but I tell you my story not to be a downer but rather some advice to you. Do not stop trying and push your doctors to reach out to other doctors for ideas. After lots of mistakes and miscommunications between hospitals, Doctors and Disability Insurance, I finally got all of my doctors on a conference call. Although they have not been able to help me, at least I know I have multiple Doctors from different specialties working together.

I apologize for the long post and I pray that one of the 100's of medicines out there will help you.

Best regards,

Tim

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