Chronic Daily Migraines

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Shafreeka
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/22/2011 11:49 PM (GMT -6)   
I am 23 and have been suffering from intense daily migraines for about 12 years. I have had seizures for about 3 years, but this isn't about the seizures. I have seen tons of neurologists I have tried multitudes of medications and treatments, such as:

Topamax (m&s)
Zonegran (s&m)
Tegretol (s&m)
Trileptal (s&m)
Fioricet (migraines)
Cafergot(m)
DHE, Botox, Lidocaine Injections 
Occipital Nerve Block
Midrin(m)
Triptan Drug Class (Allergic)
Migranal(m)
Voltaren, Lodine , levacet(m)
Benadryl(m)
Toradol(m)
Reglan,Compazine,zofran,-phenergan(m&n)
Ultram(m)
-Stadol & Nubain(m)
-Zanaflex(m)
Baclofen(m)
Flexaril(m)
Valium, Ativan, etc...(m&a)
Celebrex(m&gp)
Ibuprofen, aspirin, tylenol
Verapamil,atenalol,metoprolol(m&heart)
Prednisone(m)
Inderal(m)
Elavil(m)
Nadalol(m&heart)
Magnesium supplements(m&heart)
Lithium(m&p)
Massage & Chiropractor(m)
Cymbalta, effexor, prozac
-Tylenol 3, percocet, lortab, methadone, dilaudid, morphine(m&gp)

(m-migraines, s-seizures, p-psych, h-heart, gp-general/other pain, a-anxiety, n-nausea)
I keep a journal for these very reasons. I couldn't recall these things if I didn't. I have been doing a lot of research about all of the medicines that could help, including off label uses. Some of them I took for other causes but noted that there were no changes in my migraines while I was on them. I have tried all of them for atleast 2 weeks each, if not more. Very few of them helped in the least, and the ones that had a good effect merely dulled the pain to a semi-tolerable level. Some days i can't even get out of bed. I'm soooo frustrated with this. If any one has any ideas, I would be supremely grateful.

Thanks,

Shafreeka

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 6/23/2011 5:02 AM (GMT -6)   
So sorry your going through so much pain. I can sooo relate to what your going through. I have daily chronic migraines, in fact I'm up at 4:30 am with a terrible migraine along with neck pain. I lived with a seizure disorder for over 25 years of my life before having brain surgery to remove scar tissue that was causing my seizures. I had complex partial seizures. It feels good not to have to worry about having a seizure, now I'm praying that there will be a treatment that will cure these migraines. I wish you the very best and pray that the doctors can help you!

Blessings,

Mercyme


If you'd like to chat sometime we can setup a time that we can both be here. I know it helps to talk to others who understand. :)

Shafreeka
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/23/2011 5:11 AM (GMT -6)   
Are you available now? I'm up bc of a rediculous migraine I've had for a week and a half that keeps me from taking all my meds: heart, seizure, etc...So I'm feeling really awful. Don't know what to do. I have a cardiology appt tomorrow and I know the dr is going to look at my blood level of the med I'm on and be pussed cuz it will be non existent. I have a near appt Friday. He has me on a starting dose of methadone for the pain. It kinda dulls it so I imagine the dose will go up on it to help more but I have been out for over two weeks cuz I could get an appontment. Blah.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 6/24/2011 12:47 AM (GMT -6)   
Neurofeedback, GARD Diet, Migraine Elimination Diet, Ketogenic Diet, Memantine, Depakote, Lyrica, VitB2, Feverfew, 5HTP.

Post Edited (EvilFluorescents) : 6/23/2011 11:50:39 PM (GMT-6)


jacob grinberg
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/24/2011 1:36 PM (GMT -6)   
I WATCHED A WEEK AGO ON TV BOTOX INJECTION TREATMENT FOR MIGRAINE, AND ITS AMAZING EFFECT ON ELIMINATING MIGRAINE FOR A SIX MONTHS PERIOD

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 6/24/2011 7:58 PM (GMT -6)   
This may seem too simplistic, but have you been food allergy tested?
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
1-2 pads per day up till around May 2011, then 0!!!
Taking 20 mg levitra daily June 2011.
1st post-op PSA less than .05
3 month post surgery = undetectable


staging: pT2aNo, Gleason6

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 6/24/2011 8:53 PM (GMT -6)   
Jacob, I have had botox for my migraines and it did nothing at all, but I've read where it has helped some people. I felt no relief at all and it was so expensive ($2,700) and that was just for one session! The neurologist wants me to come back again in July for another set of injections, but I'm not going to since the first session didn't help at all.

Shafreeka, sorry I am just now reading these post. Yes! I would love to chat with you some time. I will try to stop by here Saturday night around 9:00pm est.

Mercyme ;)

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 6/24/2011 10:04 PM (GMT -6)   
Whoa Mercyme that is very expensive (it should cost about 1000-1400 out of pocket from a physician who has A LOT of experience giving the injections). Botox is now approved by the FDA (this is a recent-ish development) for CDH, so many insurance plans now cover the injections. Just like they say to give meds a minimum of 2-3 months before stopping, they say to give botox a minimum of 3 rounds before judging it (you may need a few rounds to really weaken overworked muscles). Food for thought.

anewbie
New Member


Date Joined Jun 2011
Total Posts : 3
   Posted 6/26/2011 10:42 AM (GMT -6)   
Have you tried Acupuncture or Neurobiofeedback or Migraine Elimination Diet?
I have had headacehes for 10 years.  I tried Botox but it didnt work but for some its a miracle.  I have tried Preventative Migraine Medication - Anticonvulsants, Calcium Channel Blockers, Antidepressants. Botox .  Painkillers & Abortives -  Muscle Relaxant, Triptans, Painkillers
I havent found a solution yet but some of these treatments help me.  Keep looking and trying new things.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 6/30/2011 11:19 PM (GMT -6)   
Do any of you have or know someone with intracranial hypertension? I've read a little about it on the internet, and though I have intractable chronic migraines I don't think I have anything like that but my symptoms had me wondering what if?? I have had brain surgery for epilepsy which was a success but now I'm suffering with daily chronic migraines. I feel a lot of pressure on the right side of my head which is the same side that I had the brain surgery on. I have terrible neck pain also! no vision loss, just a lot of eye pressure behind my right eye. I have had a eye exam and everything was fine. Had a MRI about three years ago, but I don't expect the neurologist I have now to do another one anytime soon. I am making an appt with a new neurologist because I have been with the same neurologist for over 10 years and he hasn't been able to help me with these chronic migraines. I'm thinking maybe another neurologist might have a new approach to how to deal with these migraines or do more test. Have any of you ever had a spinal tap? I had one when I was in elementary school but that is the last one I ever had. I really don't want to go through that again. I just wish the doctors could give me a reason why I have intractable chronic daily migraines. It can be so frustrating! Never give up on Hope!

Blessings,

Mercyme :)

Shafreeka
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 7/1/2011 5:29 AM (GMT -6)   
Yes, I have tried biofeedback, acupuncture, physical and massage therapy, the elimination diet, I have been checked for food allergy. I have had four rounds of Botox and four nerve blocks. The nerve blocks help but not much. The new neurologist went over my history and said part of the problem is that I have refractory occipital neuralgia. I have had every manner of conventional treatment for it and it has helped little. The next options for it are several types of surgery and implantable stuff. I also have degenerative disc disease so my back is a mess as well and surgery is coming up for that. I have seizures and they aren't as frequent but still too often and awful when they occur. If I'm going to have all these surgeries I might see if the dr will put in a vagus nerve stimulator. It is used for epilepsy and depression, so I think it can help. Finally, they also found a cavernous angioma in my MRI and he says it too can play a role in all my health problems. It needs removed. I feel like it's all coming down on me at once. Blah.

Shafreeka

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/5/2011 8:03 PM (GMT -6)   
So sorry for what you are going through! I can't wait to see a new neurologist to get his/hers perspective on my migraines.I have tried almost every drug my current neurologist knows to give me. I just finished a round of botox, no luck with that. Had a deep tissue massage yesterday along with chiropractor adjusting my neck/back. I wonder if there are more test that they can do to find out why I'm having daily migraines. I have had epilepsy brain surgery, the seizures are gone! thank the good Lord! Now if only I could get some relief from these chronic migraines. I have so much pressure on the right side of my head. I read about some people having intracranial hypertension and didn't know it until a spinal tap was done. I have only had one spinal tap and that was right before I was diagnosed with epilepsy. I thought that a MRI would show if I might have fluid build up around my brain, but have been told that the only test for that is a spinal tap. I am seeing my family doctor July 13th for a check up and I'm going to get him to give me a referral for a new neurologist. I am so drained from these migraines. Wishing you the very best!

AdamWestley
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/9/2011 1:02 AM (GMT -6)   
First off, let me say that Shafreeka you are not alone. I think that making use of this forum is a great step (I just joined now) to getting support from people who understand what you - and I - am going through. Second, I am so humbled at the fact that there's people that are much, MUCH worse off than I am. I get weekly migraines, always debilitating sometimes more serious than others. I've been hospitalized many times...I won't bore you with my history but, like you, I have tried many medications, different "cures" (acupuncture chiropractors, naturopaths, bio-feedback, botox injections...) and nothing seems to really work. I would suggest trying to stop taking meds all together and doing daily acupuncture because although I'm not a doctor, I KNOW that taking so many meds whether simultaneously or in 2 week intervals they AREN'T going to help...However, I'm aware of the horrible pain one endures during a migraine attack and know how we all hope against hope that we're going to find the miracle drug. The next one will work, the next one will be the right one. We pray, we hang on with all our might to the idea that "all you have to do is find the right drug, you just haven't found it yet". "There's something you haven't tried". The truth is, we have to find a way to deal with migraines that's sustainable. We just want the capacity to LIVE to be without pain, to function, to be reliable, to get rid of this barbarious invasion taking over our souls. You have to tell yourself "I WILL DO THIS" "THIS WILL WORK" "I'M GOING TO GET BETTER". You have to put everything you've got into it. You've got to say: "NO! YOU WILL NOT TAKE OVER MY LIFE, I WILL BEAT YOU". We need to accept that it's a struggle, it's a battle. You're going to lose some, but you're going to win some. It might never be you are him, but eventually you will win more often and who knows, maybe you will be able to just say that migraine has been defeated. But until that day, and always look to that day, you've got to keep hope and fight with all you've got. I don't mean fight by bombarding you body with large doses of chemicals every day and changing them every few weeks (not that I think meds are altogether bad, I think they're often necessary), but fight with your mind, with your head, meditate, do yoga, get acupuncture, eat the right foods, exercise, be healthy, do introspection...put all the odds on your side, and that's the best you can do. I also pray that one day they'll find a miracle cure and be pain free forever. But until that day comes, we've got to fight for ourselves. I don't claim to have the answer, or that I know any more about migraines than any of you but I know that we're in this fight, and we're in it together.

Shafreeka
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 9/9/2011 11:39 AM (GMT -6)   
Btw, I didn't mean that I took all these mess for only two weeks, I meant that I did take some for that long but they were while I was in the hospital(injections like she, magnesium, other cocktails) but 95% of these medications, I took for 6 month to 3 years. I couldn't possibly know how/if they worked otherwise. I've tried not taking anything (I mean almost no medication) for ten months before, while doing acupuncture, massage, yoga, exercise, certain diet, and that did not work. I'm not trying to be 100% pain free. Just to get my pain to a tolerable level. As much pain and frustration this and my other illnesses give me, I really don't let it bother me anymore. I had cancer once and I beat it and now there is a tumor in my head and I could very well be cancer as well, but I'm not worked up about it. I think I'm strong and can get through this.

Alysha
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