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-   -   desperate to find an answer to severe migraines! (https://www.healthboards.com/boards/tmj-disorder-temporomandibular-joint/632866-desperate-find-answer-severe-migraines.html)

kimmer08 09-09-2008 04:22 PM

desperate to find an answer to severe migraines!
 
Hello and thank you for your time in advance!
I am suffering from severe migraine headaches! I average 3-4 of them per week. I get them so bad that I have to seek medical attention at the ER to relieve them. Some last for days and some only for a few hours. I have been given so many different medications and tried so many different things, and none have worked. I have recently changed doctors and he has referred me to a neurologist who then referred me to a physical therapist. This therapist has sent me to an orthodontist to have a "gelb splint" used. The therapist thinks that by correcting my TMJ and jaw alignment problems, that my headaches will decrease if not disappear.
Does anyone have any advice for me? I am desperate!!!!!
PLEASE HELP!!!!

myohio 09-09-2008 06:02 PM

Re: desperate to find an answer to severe migraines!
 
I don't really have an answer for you, just that I also get 2-3 migraines a week from my jaw. It's really debilitating, the only thing that works is excedrin, a muscle relaxer, icy hot and a heating pad. I also visited a neurologist for my headaches, pupils being unevenly dilated, but he found nothing because it was my jaw. I also try to relax as much as possible, a lot of my problem is muscle tension. I have had this problem for 3 years now nd right now i'm in the middle of a very bad flare-up. My throat is experiencing discomfort this time so I know its bad. I'm also still looking for relief, but I want you to know I feel your pain. Hope we find the answer soon!

pipdog 09-09-2008 07:16 PM

Re: desperate to find an answer to severe migraines!
 
I'm wearing a Gelb appliance to reposition my mandible. The main objective according to the dentist is to bring my mandible down and forward to decompress the TMJs and allow the muscles to work at their correct length. Working at the correct length should get them out of spasm which is what causes the pain.

He made it as a 'flat plane' to start off. Flat plane takes the interdigitation of the teeth out of the equation in determining how the jaws close. I was sliding around on the top which was weird but quickly I noticed that my mandible moved down and forward as though this is where it always wanted to be. Once the disc is recaptured the Gelb is modified to provide 'indexed occlusion', which are indentations that provide a fixed stop to bite into.

I didn't get migraines as such more 'eyegraines' and during the day they have gone from a 10 to a 5 in intensity but they flare up at night again so all the good work with holding the correct jaw position during the day seems to be getting undone while sleeping. I think I may need a night-time double block type splint for this.

Some if not most TMJ dysfunction specialist believe that the majority of headaches are caused by mis-aligned jaws and that the condition is only slowly being recognised by the wider medical community. Part of the difficulty is that it is a medical problem with a dental solution so it kind of falls between two areas.

Apart from the migraines what other symptoms do you have? What made the PT suggest seeing an orthodontist?

Anyway I think you are well advised to go down the Gelb route

Good luck

gorgee 09-10-2008 05:34 AM

Re: desperate to find an answer to severe migraines!
 
I am currently fighting off migraines, and battling tmj, and fibro. My migraines are always behind my left eye ball. I have them everyday. I am so tired, and they run my life. My tmj is not responding to treatment, and my condyles are broken, well one is worn down to 1/4 its size, and the other is dislocated. My dentist, my facial pain doctor, is trying to find out a way to help me either by orthodontics, or by surgery. I have been seeking surgery for the last past year, traveling as far as 5 hours away, and being told by 3 surgeons that I needed surgical help, only to have my insurance deny it, and here I am still in facial pain, and having major migraines. I need more help. Are your migraines always behind the eyes, or one eyeball like mine, or in other areas of the head?

Thank you,

Kassandra

kimmer08 09-10-2008 08:07 AM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=Kass3175;3722987]I am currently fighting off migraines, and battling tmj, and fibro. My migraines are always behind my left eye ball. I have them everyday. I am so tired, and they run my life. My tmj is not responding to treatment, and my condyles are broken, well one is worn down to 1/4 its size, and the other is dislocated. My dentist, my facial pain doctor, is trying to find out a way to help me either by orthodontics, or by surgery. I have been seeking surgery for the last past year, traveling as far as 5 hours away, and being told by 3 surgeons that I needed surgical help, only to have my insurance deny it, and here I am still in facial pain, and having major migraines. I need more help. Are your migraines always behind the eyes, or one eyeball like mine, or in other areas of the head?

Thank you,

Kassandra[/QUOTE]
Thank you for responding! It helps me a great deal to know that I am not the only one who is suffering and being told that all my MRI's and catscans are within "normal" range.
I also have been denied by my insurance. I am in the middle of an appeal right now. Hopefully to find out the results today.
My pain always starts in the right side of the back of my neck. Then within 15 minutes or so is in the front left quaderant of my head. My left eye always hurts and some times my ear (left) and teeth(left) also hurt. I feel like someone is setting off bombs in my ear. I swear I can hear things from miles away. I live on a mountain with absolutely no neighbors, so it is very peaceful here, but not when I have a migraine. I'm sure you know what I mean.
In short......stay strong and maybe if we stick together, we will get through this. Like I said, I am so glad to know that I am not alone.
P.S. My mother also suffers from fibro, but they say that I don't have it. Who knows!!

kimmer08 09-10-2008 08:11 AM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=pipdog;3722641]I'm wearing a Gelb to reposition my mandible. The three main objectives according to the dentist are bringing my mandible down and forward, decompressing the TMJs and allowing the muscles to work at their correct length. Working at the correct length should get them out of spasm which is what causes the pain.

I didn't get migraines as such more 'eyegraines' and during the day they have gone from a 10 to a 5 in intensity but they flare up at night again so all the good work with holding the correct jaw position during the day seems to be getting undone while sleeping. I think I may need a night-time double block type splint for this.

Some if not most TMJ dysfunction specialist believe that the majority of headaches are caused by mis-aligned jaws and that the condition is only slowly being recognised by the wider medical community. Part of the difficulty is that it is a medical problem with a dental solution so it kind of falls between two areas.

Apart from the migraines what other symptoms do you have? What made the PT suggest seeing an orthodontist?

Anyway I think you are well advised to go down the Gelb route
Good luck[/QUOTE]
Thank you for responding!
I have been told everything that you have said, but it wasn't ever from anyone who actually was wearing a "gelb". I understand how all of it works, sort of, but I wish I knew if it really was going to work for me. I am fighting with my insurance company right now for some help with payment. In reality, I am so desperate that I am game for anything at this point.
Thank you again!

kimmer08 09-10-2008 08:15 AM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=myohio;3722553]I don't really have an answer for you, just that I also get 2-3 migraines a week from my jaw. It's really debilitating, the only thing that works is excedrin, a muscle relaxer, icy hot and a heating pad. I also visited a neurologist for my headaches, pupils being unevenly dilated, but he found nothing because it was my jaw. I also try to relax as much as possible, a lot of my problem is muscle tension. I have had this problem for 3 years now nd right now i'm in the middle of a very bad flare-up. My throat is experiencing discomfort this time so I know its bad. I'm also still looking for relief, but I want you to know I feel your pain. Hope we find the answer soon![/QUOTE]
Thank you for responding!
I am sorry you are in pain. I know how you feel though. Although, I do not have discomfort in my jaw, it is something that they found in PT and x-rays. I thought the clicking and stuff was normal. Who knew!?
Maybe if we stick together and stay posted on our experiences, we will find an answer.
Thank you again, and will hopefully hear from you again.
Good luck and feel better!

nynavey 09-10-2008 11:12 AM

Re: desperate to find an answer to severe migraines!
 
Headaches are what eventually led me to the TMJ specialist, and I am wearing appliances 24/7, but not sure if they're 'gelb'. They are hard acrylic that either force my teeth closed (such as the night one), or hard acrylic overlay on the bottom row of teeth that makes me correctly close my mouth due to the bite imprint in it (daytime one). As pip said - this is increasing the space in the joints that was previousl grating together, and hopefully will allow a displaced disc to pop back into correct position. So far it has greatly reduced my headaches and and neck pain. I wasn't even aware I was carrying around so much tension until it was alleviated! Now I compare the tension in my neck and upper back to what it was and am amazed that I put up with that pain as 'normal'.

Your problem may not be TMJ related, but I have to agree with others in that sometimes headaches are helped. Have you had a thorough exam to see just what the problem in the TMJ area is (besides x-rays)? I also thought clicking was normal, and that everyone had popping when they opened their mouth wide! I hope your insurance will come around.

temera2 09-10-2008 08:23 PM

Re: desperate to find an answer to severe migraines!
 
Hey everyone ,

I just read everyones messages in threads here and it broke my heart!:( GOSH you are all in my prayers!

I have never ever experienced a migraine and the worst I've had is a tension headache.. but to compensate for that fortunate luxury of life I've been plagued non-stop with on going earaches.

I don't mean to compare pains whatsoever.. but sometimes i wish i had the headaches as earaches are the hardest to fix..and no one specializes in it ! and EVERYONE i've seen deal with headaches. My dentist is a KING of removing migraines. A lady she saw had a migraine , non-stop for over 3 years on and off , she wore a splint which my dentist created and by one month her headaches reduced severely and via 6 months every single tmj symptom disappeared completely. What frustrates me though she cant heal my ears , why oh why!

What i wanted to say is that there is HELP for headaches.. i promise you it could be cured.. i have heard SO SO man stories that is has been cured but you must get splint therapy .. LOOK around carefully.

Out of curiosity has anyone here had earaches (sharp stabbing pains in the ear which make you scream and come out of the blue) and migraines.. If so which pain is worse :confused: I was just wondering as I've never experienced a migraine.. but gosh it sounds SO SO AWFUL! Which pain is worse to you guys?

Kind Regards,
Remember there is HOPE , NEVER give up , God Bless, your headaches will be cured... If anyone lives in my area i could recommend a heap of people?

JenniferKay 09-11-2008 11:50 AM

Re: desperate to find an answer to severe migraines!
 
kimmer08, 15 months ago after a tooth extraction, I got the most terrible headache and it continued until a botox treatment and it went away and masked it. I continued my botox treatment every 3-4 months. Soon I'll get a mouth appliance from a TMD doctor and maybe my headaches will go away permenently. The tooth extraction started my TMD problems. The botox is adminstered at a major medical school clinic by the head of its cosmetic dermatology department. Wishing you well.

kimmer08 09-11-2008 01:40 PM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=nynavey;3723367]Headaches are what eventually led me to the TMJ specialist, and I am wearing appliances 24/7, but not sure if they're 'gelb'. They are hard acrylic that either force my teeth closed (such as the night one), or hard acrylic overlay on the bottom row of teeth that makes me correctly close my mouth due to the bite imprint in it (daytime one). As pip said - this is increasing the space in the joints that was previousl grating together, and hopefully will allow a displaced disc to pop back into correct position. So far it has greatly reduced my headaches and and neck pain. I wasn't even aware I was carrying around so much tension until it was alleviated! Now I compare the tension in my neck and upper back to what it was and am amazed that I put up with that pain as 'normal'.

Your problem may not be TMJ related, but I have to agree with others in that sometimes headaches are helped. Have you had a thorough exam to see just what the problem in the TMJ area is (besides x-rays)? I also thought clicking was normal, and that everyone had popping when they opened their mouth wide! I hope your insurance will come around.[/QUOTE]
Thank you for responding!
Yes, I have had a ton of test done over the years. You have given me some hope!! It sounds to me like you are very similar to me. The way you describe the TMJ and the appliances that you were sound just like what I am suppose to get.
I don't have a TMJ specialist per say. I live in quite a rural area and don't even think one of them exists around here. I have great faith in the doctors and specialist that I do have though. It is just nice to have some sort of an answer other than "you are normal and nothing is wrong!" BS!!!!!! A migraine almost on a daily basis is far from normal. I can't even function on a daily basis and let along make any plans with my familly. THEY CONTROL MY LIFE!!

kimmer08 09-11-2008 01:45 PM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=temera2;3724027]Hey everyone ,

I just read everyones messages in threads here and it broke my heart!:( GOSH you are all in my prayers!

I have never ever experienced a migraine and the worst I've had is a tension headache.. but to compensate for that fortunate luxury of life I've been plagued non-stop with on going earaches.

I don't mean to compare pains whatsoever.. but sometimes i wish i had the headaches as earaches are the hardest to fix..and no one specializes in it ! and EVERYONE i've seen deal with headaches. My dentist is a KING of removing migraines. A lady she saw had a migraine , non-stop for over 3 years on and off , she wore a splint which my dentist created and by one month her headaches reduced severely and via 6 months every single tmj symptom disappeared completely. What frustrates me though she cant heal my ears , why oh why!

What i wanted to say is that there is HELP for headaches.. i promise you it could be cured.. i have heard SO SO man stories that is has been cured but you must get splint therapy .. LOOK around carefully.

Out of curiosity has anyone here had earaches (sharp stabbing pains in the ear which make you scream and come out of the blue) and migraines.. If so which pain is worse :confused: I was just wondering as I've never experienced a migraine.. but gosh it sounds SO SO AWFUL! Which pain is worse to you guys?

Kind Regards,
Remember there is HOPE , NEVER give up , God Bless, your headaches will be cured... If anyone lives in my area i could recommend a heap of people?[/QUOTE]
Thank you so much for your response.
Unfortunately, I haven't had an earache since I was a kid. I do remember the extreme pain though. I don't really know what to tell you.
I guess like you said, there is help out there, we all just need to band together and find it. I have no idea where you live, but I will do some research of my own to see what I come up with.
Talk to you soon!

kimmer08 09-11-2008 01:48 PM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=JenniferKay;3724736]kimmer08, 15 months ago after a tooth extraction, I got the most terrible headache and it continued until a botox treatment and it went away and masked it. I continued my botox treatment every 3-4 months. Soon I'll get a mouth appliance from a TMD doctor and maybe my headaches will go away permenently. The tooth extraction started my TMD problems. The botox is adminstered at a major medical school clinic by the head of its cosmetic dermatology department. Wishing you well.[/QUOTE]
Thank you for responding.
We don't have anything like that around here. I don't even know where I would go to get an injection. But, I'm sure it would be the same old routine........insurance doesn't see it as medical, they see it as cosmetic. I don't think that for what you pay for insurance that they should have any say in your treatment!!!! Besides, they don't know me at all. I'm just a name on a piece of paper with a problem. Big deal to them!!!!
Thank you for the incouragement.

gorgee 09-14-2008 03:28 PM

Re: desperate to find an answer to severe migraines!
 
I am in constant pain, everyday, and everyday have migraines, or extreme pain behind my left eye. The control my life. The last past 2 days, I have been have fibro flare-ups due to weather, left eye migraine, and a brutal, congested cold. You should see my house, it is a disaster. My husband and son decided to tear apart the bedroom and show me the stuff under the bed. I then had to rip the room apart and try to clean it as best I can. I can barely walk up the stairs without complete exhaustion, and moving is like moving a boulder.

I feel for all us of. I have a brain mri tomorrow morning at 7:30 and I m excited. We will see. I am nervous about doing it with a cold. I will let you all know, hopefully something will show up as to why I have these terrible migraines. I need answers, and I am desperate. I am ready for surgery, if my doctor said I found a surgeon who can help your facial tmjd, and help your migraines, and they can do it tomorrow, I would be there in a heartbeat. I am that tired.

Good luck to us all, and we need to stick together.

Kassandra

kimmer08 09-15-2008 07:28 AM

Re: desperate to find an answer to severe migraines!
 
[QUOTE=Kass3175;3728220]I am in constant pain, everyday, and everyday have migraines, or extreme pain behind my left eye. The control my life. The last past 2 days, I have been have fibro flare-ups due to weather, left eye migraine, and a brutal, congested cold. You should see my house, it is a disaster. My husband and son decided to tear apart the bedroom and show me the stuff under the bed. I then had to rip the room apart and try to clean it as best I can. I can barely walk up the stairs without complete exhaustion, and moving is like moving a boulder.

I feel for all us of. I have a brain mri tomorrow morning at 7:30 and I m excited. We will see. I am nervous about doing it with a cold. I will let you all know, hopefully something will show up as to why I have these terrible migraines. I need answers, and I am desperate. I am ready for surgery, if my doctor said I found a surgeon who can help your facial tmjd, and help your migraines, and they can do it tomorrow, I would be there in a heartbeat. I am that tired.

Good luck to us all, and we need to stick together.

Kassandra[/QUOTE]
Good luck with your MRI and I hope to hear from you soon with some positive results!!
I agree, we all need to stick together!!


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