Going on 3 years, migraine EVERY day!

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Alayna81
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Date Joined Jun 2011
Total Posts : 1
   Posted 6/5/2011 7:48 AM (GMT -6)   
I'll try to make it as short as possible. Up until 3 years ago, I maybe got a migraine once every 2 months. One day I woke up with a migraine, worse than the norm. It did not go away for 3 weeks. I was in and out of the ER countless times. Ever since then I have had severe daily migraines. I've had an MRI done, that came out clear. I've been on: Topamax, Elavil, Depakote & steroids was the most recent. The topamax worked for about 6 months, then quit working. The other meds never worked at all. I've seen 6 different neurologists and a headache specialist. No one knows what is wrong with me. I'm going for a sleep study next month. I literally have a migraine every single day. My life has been turned upside down. I feel like I don't know how much more I can take. Any suggestions??

Pseudoridden
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/6/2011 5:46 PM (GMT -6)   
I would demand a spinal tap...individuals who.are diagnosed with pseudotumor cerebri are major headache sufferers...won't hurt to get the test done!

cocopop
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/7/2011 4:34 AM (GMT -6)   
I know what you are going through, I have had continuous migraine for the last 6 yrs the last 2 have been the worse time of my life.  I have been through all the usual meds plus MRI scan and 3 neurologists.  I am currently having botox which does reduce the level of pain to an average 4/10 but I still get spikes for no reason I can find.  The botox is suppose to last at least 3 mths but I wears off on me after about 2 mths so I have to put up with the increasing pain which I manage with morphine and Diclofenac  until my next appointment.  The pain has become my life it rules what I can do and where I can go.  I wish I had a suggestion for you just wanted you to know you are not suffering alone. x

mercyme
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Date Joined Feb 2005
Total Posts : 310
   Posted 6/9/2011 12:42 PM (GMT -6)   
I know how you feel! I've had a migraine for weeks now! I have had migraines since I was a teenager, but usually only 1-2 a month, now I'm having them everyday and for the past couple of weeks they have been terrible. Have any of you had a steroid pak when you couldn't break your migraine cycle? I was in the hospital for DHE protocal it helped for about a week then I was back to daily migraines. I try to watch what I take because I know you can go through rebound headaches, but this no headache...It's a terrible migraine! I am in so much pain and it really takes a toll on your body emotionally and physically. Praying that it goes away soon, before I loose my mind. Blessings to you all!

Mercyme

tmjpain
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Date Joined Oct 2008
Total Posts : 2021
   Posted 6/9/2011 9:04 PM (GMT -6)   
I hear you all and can feel your pain. I have continuous headache in both temples. It's been eleven

years and i have done it all. I have lost my job and the person i used to be. I struggle every day.

It's tough so i only take it one day at a time.

Suzane

Pseudoridden
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/9/2011 11:50 PM (GMT -6)   
I know I've said it already, but have any of you had a spinal tap done to check your pressure? If not, request a neaurologist to do it. They might say that you don't have other symptoms of ptc...but that isn't the case. Once i was diagnosed and put on the Diamox my headaches have been gone for 1 1/2 years.....I beg you guys to get tested. Its a condition that is so overlooked by doctors, but has become diagnosed alot more frequently in the last few years. Its also called intracranial hypertention. If you have facebook the have a page on there. Alot of support. I wish you guys all the luck and I hope your headaches can be relieved once and for all!

cocopop
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/10/2011 9:23 AM (GMT -6)   
I am seeing my neurolgist next mth so I will ask about the spinal tap.  good luck to us all...today is not a good day for me on my 4th dose of morphine and just trying to finish my working day before I can go home and hide in bed (lost my previous job of 16yrs cos of time off so can't afford to lose this one...just have to stay in and try not to cry) can barely remember the person I use to be.

Pseudoridden
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/10/2011 10:19 AM (GMT -6)   
I am glad your going to request it. I was diagnosed not only after having headaches all the time but then when I went and saw an opthamologist for eye check, I have papilladema (spelling?) My optic nerves were very swollen because of the pressure. If left untreated I would have eventually went blind. Very horrible. It sucks that I have a disease that there is no cure for, but am very grateful that I finally got an answer to something that was a mystery for so long and now can treat it with medicaton and have relief. I hope they can find an answer to your situation as well. Headaches are just horrible and when they are so severe they have an enormous impact on our everyday life. Good luck and come back and let us know what happened. Good luck!

tmjpain
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Date Joined Oct 2008
Total Posts : 2021
   Posted 6/10/2011 10:38 AM (GMT -6)   
Yes my headaches have changed my life for sure. After 11 yrs of suffering, each day is a struggle.

And nothing helps my pain. I use ice packs to keep me sane. My MRI showed no increased pressure

so there is no indication to do a spinal tap. But so happy it has helped you.

take care
suzane

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 6/10/2011 10:38 AM (GMT -6)   
Yes my headaches have changed my life for sure. After 11 yrs of suffering, each day is a struggle.

And nothing helps my pain. I use ice packs to keep me sane. My MRI showed no increased pressure

so there is no indication to do a spinal tap. But so happy it has helped you.

take care
suzane

Pseudoridden
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Date Joined Jun 2011
Total Posts : 5
   Posted 6/10/2011 11:11 AM (GMT -6)   
My MRI also came back normal. And within a 4 month period I had two done because my primary sent me to another neurolagist for a 2nd opinion. And even though they did the 2nd one with and without contrast it was still normal. So that's when it was decided to do the spinal tap. Its better to do all tests available to rule out the conditions, but some of these insurances out there are so against the patients its almost inhumane. Like I said, I hope they find something quick for your pain. Have you ever considered going on disability? Im surprised your Dr. Has not come to this yet? Let me know.

goosebarn
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Date Joined Jun 2011
Total Posts : 2
   Posted 7/30/2011 10:10 PM (GMT -6)   
If someone had the answer it would be wonderful, my headaches are just about ot wreck my marriage.
 I have had them sice 2009 and no reasin for them found,
they have naid me a reclusive antisocial git- what am I going to go?

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/31/2011 10:01 PM (GMT -6)   
My heart goes out to you! I too suffer Daily with migraines. I had a CT scan on July 29th, hopefully I will get my test results back this week. The only medications I take for my migraines is fioricet, zanaflex, klonipan, toradol. I have tried sooo many migraine meds with no success. I've had DHE protocol, botox injections, massage therapy, imitrex, maxalt, relpax, frova, midrin, topamax, elavil....well you get the point, I've tried a lot of drugs! If the CT scan doesn't show anything should I request another test? I have hurt so bad this weekend. I am having a very sharp stabbing pain right above my right eye, which is the same side I have my migraines. I think my doctor ordered the CT scan to make sure I don't have too much fluid around my brain causing the migraines.

Do any of you have any thoughts on what I should do next if the CT scan is normal? I have been suffering with migraines for over 15 years, but the past 2 years my migraines have gotten much worse. I'm not able to hold down a job, and it's taking a toll on my family. Thanks for listening ~

Mercyme

tmjpain
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Date Joined Oct 2008
Total Posts : 2021
   Posted 7/31/2011 10:16 PM (GMT -6)   
Yes i am on disability. i've been told by the radiologist my mri would have shown a change in the ventricles if I would have increased intracranial pressure. I have seen three neurologists and they say my symptoms don't show a need for a spinal tap. I have more the tmj pain but my headaches are continuous. Like mercyme, my list is long for what i have done and tried.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 8/1/2011 7:14 AM (GMT -6)   
I wonder if the CT scan will show if I have intracranial pressure? I don't want anything to be wrong and I pray the test come back normal, but one thing that is not normal and it's these Daily Migraines! I'm afraid that the doctors may never have the answer for me and I am going to have to deal with this pain, which is what I've done for many years. Will be calling my doctor today to see if he has my results from the CT scan and to get another referral for another neurologist. It's time for a new start with a new neurologist. I really wish there were headache specialist in my area. Wishing you all a great Monday!

Mercyme

sunladybargains
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/3/2011 7:14 PM (GMT -6)   
Have you tried an allergist to see if there is anything you're allergic to? How about alternative medicine? Chiropractic? massage? Nutrition?

Low laser or cold laser therapy can help.

Lillia
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Date Joined Aug 2011
Total Posts : 2
   Posted 8/6/2011 12:55 AM (GMT -6)   
Hi to all...I to suffered bad with migraines for years and I am now on Zoloft and Topamax and now from almost having an attack every day,I now have may be one or two a month,but when i do have an attack I use IMIGRAN tablets 50mg they are fantastic,after 45 minutes i am fine and back to normal. Now i live in Cyprus and for all those of you who are on the other side of the world to me ask your doctors for something similar,trust me they are miracle workers:)

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 8/6/2011 6:37 AM (GMT -6)   
Got my results back from my CT scan and the nurse said there had been no changes since my last CT scan so that's a good thing. I woke up at 6:30 this morning with a migraine.grrr! Who wants to get up at 6:30 on a Sat morning! lol! I'm thinking what now...do I just learn to live with this condition, which is what I have done for the past 10 years. I've had migraines since a teenager, but nothing compared to what I have now. I was at the hospital last night to visit my mother in-law that is in the hospital, and I had a migraine I had to make my nephew get up and let me sit down, I thought I was going to pass out the pain was so bad. I want to see another neurologist, but when I called my doctor's office the lady said I don't know if the doctor will give you a referral just for migraines...Is she kidding me!!! I'm calling back Monday and demanding a referral. This was just my primary doctor not a neurologist. The neurologist I see now is doing nothing to help me, but I guess since he has given me just about everything he knows to he has kinda given up. It's time for a new perspective! Also going to go to a chiropractor and maybe some deep tissue massage to loosen up my neck muscles. Hope you all have a migraine Free day!

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 8/6/2011 6:39 AM (GMT -6)   
I am guessing the CT scan would have shown any pressure fluid build up in the brain, so there's no need for any other test? Just wondering.

Mercyme

Gator4life
Regular Member


Date Joined Apr 2011
Total Posts : 63
   Posted 8/10/2011 1:32 AM (GMT -6)   
I feel your pain. I have my own battle going on right now. Did you ever consider bruxism? (teeth grinding/clenching) That's what my neuro suspects I have. 'Been on CYCLOBENZAPRINE (flexeril) for roughly 3 weeks. It's definitely helping. One 10mg pill before I sleep. I, too, had headaches/pressure just about 24/7. Wake up with it and usually go to sleep with it too. Good luck. Hope you figure it out soon.

imoseyon
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 8/12/2011 9:08 PM (GMT -6)   
This may be a long shot but try ALCAT food test. You may be intolerant to some common food groups.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 8/12/2011 10:41 PM (GMT -6)   
I have just recently started seeing a chiropractor, he told me my neck is out of alignment. I'm am seeing him everyday for two weeks to see if there is any improvement at all. I will continue to see him for a while to see if he can get my neck back into alignment and reduce my migraines. If this doesn't work I don't know what else to do. Trying to get in to see another neurologist to get a fresh perspective of what else I can try. I have chronic migraines everyday. It gets soooo old!! Someone told me that I should try a natural supplement called Formula 303, it's a natural muscle relaxant to help with tight muscles and muscle spasms. It's worth a try since I have tried about every drug out there that the neurologist prescribe for chronic migraines. I had to go to my niece's 18th birthday party tonight and it was so hard to go with a migraine, but I did. Thank goodness I have a very high pain threshold! You do what you have to do when you have no other choice living with a chronic illness. Thinking and praying for all of you that deal with migraines.

Blessings,

Mercyme

ciiiarsey
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/13/2011 8:55 PM (GMT -6)   
Hey guys I'm only new to the site and this thread...


Firstly, reading your stories makes me feel less isolated being in the pain I am in. I thought I was the only one suffering for this long, and the only one who has tried everything they can think of to eliminate the pain!

VERY long story short...I am 24 and started getting headaches when I was 12. I had many scans done and nothing showed up but as the headaches got worse as the years went on we continued to demand more scans as it was hard to believe there was nothing wrong and I was healthy. I also looked into any possible alternative therapies I could have to try ease the pain, with nothing being a huge success. Eventually when I was 17 by chance when doing blood tests for something completely different they found that I had a tumor on my pituatry gland which had grown quite large at this stage because they had missed it in prior scans. I presumed I had found the reason for the years of daily agonizing headaches. I started medication for the tumor immedietly and when it had shrunk to a size that the doctors were happy with and I was still suffering daily I started asking questions. They explained that the tumor was now eliminated as a cause of pain as it had reduced so much in size. I found this hard to comprehend... I still had a tumor in my head very close to my eyes and brain, however small it may be, yet it is 100% not causing any pain whatsoever?! So I got a second opinion. I was then convinced that it was not possibly coming from the tumor so I had to look elsewhere for the answer.

I have tried everything and anything that I have heard of, read about or that anyone has recommended for many years and suffering bad whilst going about every one of them. I have had a very bad headache every day and night since January 26th, the worst one of my life to date and am wondering when it is going to end? :( I had to end my year abroad in Australia very short because the pain was so horrific. Since returning home I have been diagnosed with migraine having gone to yet another Neurologist, although it had been eliminated again and again over the years. I am new to this so I am looking for some of your info or experiences...

I have been told to stop taking any pain killers, etc.... is that normal??? because I am finding that torture with the pain being so bad! ( although I am proud of myself I am off them 2 months now :) )

I started Topomax... 25mg but had to increase to 50mg as I wasn't feeling the benefits. I have rang the doctor because the pain has gotten worse this week and I have been told to increase it by another 25mg in another 2weeks. What is the normal dosage people go up to?

I also got a (GON) Greater Occipital Nerve Injection three weeks ago which only took the intensity of the pain down a bit but didn't make much of a difference, felt it wearing off pretty quick. Has anyone else had these done before and found them beneficial??

I see that many of you are on the same journey that I was on... so I will try and think of the treatments/ therapies I have tried. Some might be of benefit to you, you have probably tried most of them if your anything like me haha.

Chinese Herbalists
Accupuncture
Food Allergy Testing
Spritual Healers
Reiki
Chiropractor
Craniosacral therapy
Dry Needling
Changing all metal filling to the new ones
Wisdom teeth removed
Oral Facial Consultant- splint for Jaw
Tuina (still getting this treatment today would highly recommend it!)

Sorry for the long speel!

Ciara x

Robinls
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Date Joined Sep 2008
Total Posts : 4
   Posted 8/17/2011 5:45 PM (GMT -6)   
Hi everyone, just a few questions about the thread, what are Imigran tablets?  What is an Alcat food test and where can we get one, and lastly what is a Tuina?  I have had daily migraines for 23 years, I am 37.  I have weened myself off of everything this past year, so tired of all the medications, hours and money spent traveling all over for headache specialists so on and so forth.  It's been rough this year however off all the medication except frova and the migraines really aren't any worse.  At one point I was on 10 different daily medications arghhhhh.  Trying to really focus on holistic now as I really feel the medications are toxic so any alternative treatments that have helped others I am interested in.  The today show had a spot on migraines last week but I missed it, some kind of nerve stim implant???  Maybe something to look into.  Praying for you all!!  thanks!  Robin

Jillie119
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Date Joined Sep 2011
Total Posts : 2
   Posted 9/6/2011 12:28 PM (GMT -6)   
Chinese Acupuncture!!! Try it...........I am just starting to get relief from my head pain (occipital) after 4 months. Second episode.......
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