Question:

Hi, I have suffered severe intractible headache for the last 14 years. The pain has only intensified in recent years. Now, I have tried just about everything in my futile quest to alleviate my pain. I should add that I also have TMJ facial pain and cervical pain. Anyway, the pain has been so bad I have been hospitalized for depression and sometime it’s impossible to concentrate well enough to get stuff done. In other words, the headaches are ruining my life. Here is what I have tried for pain relief Physical Therapy – several times; hit the insurance company max last year. Did daily exercises for over a year. No help. Accupuncture – saw two seperate accupuncturists with no relief Cognitive Behavioral Psychology – no help with pain but helped me with the negative affect caused by pain to some degree. Psychiatry – no help with pain but marginal help at controlling mental symptoms caused by pain Neurologists – no help, seen maybe 1/2 dozen Headache Specialist Neurologist – told me I tried everything he normally uses and I needed to go to one of these impatient headache clinics. Pain Clinic – lots of trigger point injections, deep heat massage, epidurals, facet blocks, radiofrequence neurolysis. The pain has been intensified if anything Chiropactor – no help Spiritual Counselor – no help Internal Medicine Doctor – no help Sleep Disorder Clinic – performed uvulaplasty and tonsillectomy and I no longer snore but there is no symptom relief. Allergist – no relief except for treating my asthma Diet and Exercise – no relief except I lost 50lbs Now this represents an incomplete list. I remember more than one doctor telling me I was young and shouldn’t give up – well I haven’t. I will also add the medications I have taken through the years for pain (another incomplete list). Depakote Neurontin Seroquel Olanzapine Compazine Haldol Thorazine Elavil Prozac, Luvox, Paxil, Zoloft, Celexa Trazedone Klonopin Ativan Risperdal Trilafon Triavil Flexaril Zanaflex Anti-inflammatories: Ibuprofen Vioxx Celebrex Duract Naprosyn Indocin Toradol Antihistamines Vistaril Benadryl Periactyn Analgesic Tylenol Excredin Aspirin Fiorinal/Fioricet Tramadol Codeine Midrin Antimigraine DHE All the triptans including imitrex Cafergot I am currently not taking any medication for pain except neurontin 1200mgs, which more or less just helps me get a couple hours of sleep at night. Also, I take vioxx 25mgs. Anyway, I am seeing my primary care doctor and trying to get referred to a different pain clinic. I am sorry if this post comes across as whining. I am trying to get help and can’t seem to find it. Any suggestions?

Response:

Hi, I have suffered severe intractible headache for the last 14 years. The pain has only intensified in recent years. Now, I have tried just about everything in my futile quest to alleviate my pain. I should add that I also have TMJ facial pain and cervical pain. Anyway, the pain has been so bad I have been hospitalized for depression and sometime it’s impossible to concentrate well enough to get stuff done. In other words, the headaches are ruining my life.

Hi there.  I’m sorry you’re suffering so badly.  I don’t know if anyone has suggested this already, but it’s probably worth a try, considering your jaw problems in conjunction with your headaches. The NTI is a device designed to prevent tooth-clenching and grinding. The FDA approved it for headache treatment last year (most devices that try to stop people from grinding their teeth protect the teeth and/or jaw, but don’t stop headaches or sometimes even make them worse.)  The dentist who invented the thing posts here occasionally, and there are some regular posters who have found great relief from their headaches with it.  It only helped me a little bit, but you might want to consider it. You can find details at www.nti-tss.com.  They have a list of dentists who are familiar with fitting the device.  You may need to go back for several adjustments…if it does not fit *perfectly* it will not help you at all. I know it’s really frustrating and exhausting to be in pain for so long.   I hope you can find some relief soon.  Good luck. Adrian Turtle sidewalk radical

Response:

Lots of sympathy! Depression is a terrible burden as well as the pain. Judging solely by the facial and cervical pain, can I ask if you’ve had xrays of your neck? A regular poster here recently found that she had various problems in that area; she’ll post I’m sure to let us know how she’s been doing since treatment for that was undertaken. Jeremy – Hide quoted text — Show quoted text – Hi, I have suffered severe intractible headache for the last 14 years. The pain has only intensified in recent years. Now, I have tried just about everything in my futile quest to alleviate my pain. I should add that I also have TMJ facial pain and cervical pain. Anyway, the pain has been so bad I have been hospitalized for depression and sometime it’s impossible to concentrate well enough to get stuff done. In other words, the headaches are ruining my life. Here is what I have tried for pain relief Physical Therapy – several times; hit the insurance company max last year. Did daily exercises for over a year. No help. Accupuncture – saw two seperate accupuncturists with no relief Cognitive Behavioral Psychology – no help with pain but helped me with the negative affect caused by pain to some degree. Psychiatry – no help with pain but marginal help at controlling mental symptoms caused by pain Neurologists – no help, seen maybe 1/2 dozen Headache Specialist Neurologist – told me I tried everything he normally uses and I needed to go to one of these impatient headache clinics. Pain Clinic – lots of trigger point injections, deep heat massage, epidurals, facet blocks, radiofrequence neurolysis. The pain has been intensified if anything Chiropactor – no help Spiritual Counselor – no help Internal Medicine Doctor – no help Sleep Disorder Clinic – performed uvulaplasty and tonsillectomy and I no longer snore but there is no symptom relief. Allergist – no relief except for treating my asthma Diet and Exercise – no relief except I lost 50lbs Now this represents an incomplete list. I remember more than one doctor telling me I was young and shouldn’t give up – well I haven’t. I will also add the medications I have taken through the years for pain (another incomplete list). Depakote Neurontin Seroquel Olanzapine Compazine Haldol Thorazine Elavil Prozac, Luvox, Paxil, Zoloft, Celexa Trazedone Klonopin Ativan Risperdal Trilafon Triavil Flexaril Zanaflex Anti-inflammatories: Ibuprofen Vioxx Celebrex Duract Naprosyn Indocin Toradol Antihistamines Vistaril Benadryl Periactyn Analgesic Tylenol Excredin Aspirin Fiorinal/Fioricet Tramadol Codeine Midrin Antimigraine DHE All the triptans including imitrex Cafergot I am currently not taking any medication for pain except neurontin 1200mgs, which more or less just helps me get a couple hours of sleep at night. Also, I take vioxx 25mgs. Anyway, I am seeing my primary care doctor and trying to get referred to a different pain clinic. I am sorry if this post comes across as whining. I am trying to get help and can’t seem to find it. Any suggestions?

Response:

This is PokerGuyAA and I’m just using a different screen name. I appreciate all the feedback you folks have given me. To address some of the questions that have been posed: I have never tried the NTI device but I did have the dentist make a plastic mouthpiece. This hasn’t helped at all, but then again NTI functions (I assume) much differently.

The plastic bite guard allows you to bite down with your back teeth.  The NTI puts all the pressure on the front teeth, triggering a reflex that limits pressure.  Try feeling your temples with the flats of your fingers while you clench your teeth.  When you have located the area that bulges most, put a pencil between you back teeth and bite down hard.  Get a sense of the bulge with that.  Then put the pencil in front, right in the middle, and bite down again.  You chould find that there will be musch less tendion in the muscles that way. – Hide quoted text — Show quoted text – Also, I should have mentioned I have tried Topomax but it just didn’t work at all. What I did today was make an appointment with the Michigain Head Pain clinic. It’s a 500 mile drive but I think it is necessary at this point. I can’t get in for two months but they put me on their waiting list. In the meanwhile I saw my primary care doctor and got a referral to a different pain clinic then the one I’m currently attending (and not having much success with). I saw the director of this pain clinic when I was inpatient this summer but they had such a long waiting list. In the meanwhile, I am still seeing a pain psychologist and a psychiatrist to deal with the mental fallout caused by the pain. I appreciate all the helpful suggestions and will keep everybody posted on the Michigan Headpain Clinic. Thank you

Response:

PokerGuy- I totally agree with the suggestions for the NTI-tss device. But you also need to do what one neuro suggested – find a good inpatient migraine clinic, where you can be admitted and evaluated in a fully encompassing manner. I’ve been an in-hospital patient twice at the Michigan Headpain and Neurological Institute, and the experience was absolutely vital. They’re on this list, as are other similar clinics that might be closer to home:  http://headaches.about.com/cs/headacheclinics/ But don’t let distance be the determining factor. My head hurt so bad that I *chartered a plane* for the 550 mile trip to Michigan, when my migraines confused me so badly I missed 3 airline flights! Ginnie – Hide quoted text — Show quoted text – Hi, I have suffered severe intractible headache for the last 14 years. The pain has only intensified in recent years. Now, I have tried just about everything in my futile quest to alleviate my pain. I should add that I also have TMJ facial pain and cervical pain. Anyway, the pain has been so bad I have been hospitalized for depression and sometime it’s impossible to concentrate well enough to get stuff done. In other words, the headaches are ruining my life. Here is what I have tried for pain relief Physical Therapy – several times; hit the insurance company max last year. Did daily exercises for over a year. No help. Accupuncture – saw two seperate accupuncturists with no relief Cognitive Behavioral Psychology – no help with pain but helped me with the negative affect caused by pain to some degree. Psychiatry – no help with pain but marginal help at controlling mental symptoms caused by pain Neurologists – no help, seen maybe 1/2 dozen Headache Specialist Neurologist – told me I tried everything he normally uses and I needed to go to one of these impatient headache clinics. Pain Clinic – lots of trigger point injections, deep heat massage, epidurals, facet blocks, radiofrequence neurolysis. The pain has been intensified if anything Chiropactor – no help Spiritual Counselor – no help Internal Medicine Doctor – no help Sleep Disorder Clinic – performed uvulaplasty and tonsillectomy and I no longer snore but there is no symptom relief. Allergist – no relief except for treating my asthma Diet and Exercise – no relief except I lost 50lbs Now this represents an incomplete list. I remember more than one doctor telling me I was young and shouldn’t give up – well I haven’t. I will also add the medications I have taken through the years for pain (another incomplete list). Depakote Neurontin Seroquel Olanzapine Compazine Haldol Thorazine Elavil Prozac, Luvox, Paxil, Zoloft, Celexa Trazedone Klonopin Ativan Risperdal Trilafon Triavil Flexaril Zanaflex Anti-inflammatories: Ibuprofen Vioxx Celebrex Duract Naprosyn Indocin Toradol Antihistamines Vistaril Benadryl Periactyn Analgesic Tylenol Excredin Aspirin Fiorinal/Fioricet Tramadol Codeine Midrin Antimigraine DHE All the triptans including imitrex Cafergot I am currently not taking any medication for pain except neurontin 1200mgs, which more or less just helps me get a couple hours of sleep at night. Also, I take vioxx 25mgs. Anyway, I am seeing my primary care doctor and trying to get referred to a different pain clinic. I am sorry if this post comes across as whining. I am trying to get help and can’t seem to find it. Any suggestions?

Response:

You certainly have tried everything, I would have given up by then. Have you tried craniosacral therapy? This site can explain it more. I personally haven’t tried it yet…when my head stops hurting maybe. I’ve heard this can do wonders though… And I found Anaprox as an anti inflammatory has helped me. Gave me hives though, but hey hives are better than feeling like there’s an axe in your head. http://www.craniosacraltherapy.org/ cathie

| Hi, I have suffered severe intractible headache for the last 14 years. The pain | has only intensified in recent years. Now, I have tried just about everything | in my futile quest to alleviate my pain. I should add that I also have TMJ | facial pain and cervical pain. Anyway, the pain has been so bad I have been | hospitalized for depression and sometime it’s impossible to concentrate well | enough to get stuff done. In other words, the headaches are ruining my life. | Here is what I have tried for pain relief |

Response:

Absolutely, since PokerGuyAA is suffering from TMJ headaches, the NTI device is sure to help.  Best of luck to you, PokerGuyAA, and I’m sorry to hear you’re in so much pain. Jasmine

– Hide quoted text — Show quoted text – Hi there.  I’m sorry you’re suffering so badly.  I don’t know if anyone has suggested this already, but it’s probably worth a try, considering your jaw problems in conjunction with your headaches. The NTI is a device designed to prevent tooth-clenching and grinding. The FDA approved it for headache treatment last year (most devices that try to stop people from grinding their teeth protect the teeth and/or jaw, but don’t stop headaches or sometimes even make them worse.)  The dentist who invented the thing posts here occasionally, and there are some regular posters who have found great relief from their headaches with it.  It only helped me a little bit, but you might want to consider it. You can find details at www.nti-tss.com.  They have a list of dentists who are familiar with fitting the device.  You may need to go back for several adjustments…if it does not fit *perfectly* it will not help you at all. I know it’s really frustrating and exhausting to be in pain for so long. I hope you can find some relief soon.  Good luck. Adrian Turtle sidewalk radical

Response:

PokerGuyAA, You do my heart good! That MHNI appointment will change your life for the better. Please feel free to email me privately to discuss MHNI "stuff" if you’d like. Ginnie – Hide quoted text — Show quoted text – This is PokerGuyAA and I’m just using a different screen name. I appreciate all the feedback you folks have given me. To address some of the questions that have been posed: I have never tried the NTI device but I did have the dentist make a plastic mouthpiece. This hasn’t helped at all, but then again NTI functions (I assume) much differently. Also, I should have mentioned I have tried Topomax but it just didn’t work at all. What I did today was make an appointment with the Michigain Head Pain clinic. It’s a 500 mile drive but I think it is necessary at this point. I can’t get in for two months but they put me on their waiting list. In the meanwhile I saw my primary care doctor and got a referral to a different pain clinic then the one I’m currently attending (and not having much success with). I saw the director of this pain clinic when I was inpatient this summer but they had such a long waiting list. In the meanwhile, I am still seeing a pain psychologist and a psychiatrist to deal with the mental fallout caused by the pain. I appreciate all the helpful suggestions and will keep everybody posted on the Michigan Headpain Clinic. Thank you

Response:

Best of luck to you and please keep us posted. Jasmine

– Hide quoted text — Show quoted text – This is PokerGuyAA and I’m just using a different screen name. I appreciate all the feedback you folks have given me. To address some of the questions that have been posed: I have never tried the NTI device but I did have the dentist make a plastic mouthpiece. This hasn’t helped at all, but then again NTI functions (I assume) much differently. Also, I should have mentioned I have tried Topomax but it just didn’t work at all. What I did today was make an appointment with the Michigain Head Pain clinic. It’s a 500 mile drive but I think it is necessary at this point. I can’t get in for two months but they put me on their waiting list. In the meanwhile I saw my primary care doctor and got a referral to a different pain clinic then the one I’m currently attending (and not having much success with). I saw the director of this pain clinic when I was inpatient this summer but they had such a long waiting list. In the meanwhile, I am still seeing a pain psychologist and a psychiatrist to deal with the mental fallout caused by the pain. I appreciate all the helpful suggestions and will keep everybody posted on the Michigan Headpain Clinic. Thank you

Response:

This is PokerGuyAA and I’m just using a different screen name. I appreciate all the feedback you folks have given me. To address some of the questions that have been posed: I have never tried the NTI device but I did have the dentist make a plastic mouthpiece. This hasn’t helped at all, but then again NTI functions (I assume) much differently. Also, I should have mentioned I have tried Topomax but it just didn’t work at all. What I did today was make an appointment with the Michigain Head Pain clinic. It’s a 500 mile drive but I think it is necessary at this point. I can’t get in for two months but they put me on their waiting list. In the meanwhile I saw my primary care doctor and got a referral to a different pain clinic then the one I’m currently attending (and not having much success with). I saw the director of this pain clinic when I was inpatient this summer but they had such a long waiting list. In the meanwhile, I am still seeing a pain psychologist and a psychiatrist to deal with the mental fallout caused by the pain. I appreciate all the helpful suggestions and will keep everybody posted on the Michigan Headpain Clinic. Thank you

Response:

Oh I wish I had some suggestions, but I am also in the same boat as you. I just had the 3rd neurologist write me off as untreatable. My list of meds tried is the same as yours (except that I am in Canada, and a few of those aren’t available here). My prevetative is a paltry 50mg of Zoloft taken at night (I get the rare side effects of Zoloft when I go higher, but if I quit taking it my miugraines get considerably worse). I am classified as allergic to the triptans (aniphilaxis with Imitrex).

PokerGuy mentioned Depakote and Neurontin, but not Topomax.   I tried Depakote in 1991, and it was a complete disaster, and Neurontin in 2000…it was also a disaster, so I thought the whole class of anti-seizure drugs didn’t work for me.  But Topomax has been quite helpful – the best preventative I’ve ever taken.  I still have chronic daily migraines, but it’s not as overwhelmingly bad as before.  I know it is available in Canada (I had applied for a job in Toronto, so I was checking out the possibility of moving.  It looks like they will be hiring a Canadian, but if they *did* hire me, I would be able to keep taking Topomax.) Adrian Turtle sidewalk radical

Response:

Interesting she would be uncomfortable with Paxil, but okay with Zoloft, but then I don’t know if Paxil is more like Prozac than Zoloft.  I didn’t have a good experience with the Amitriptyline–I don’t remember exactly what the issues were…I think it was probably bad dreams and some other stuff. At least you have some indication of what helps…just finding the full solution. Michelle

– Hide quoted text — Show quoted text – I have a sensitivity to anti-depressants. I tend to get manic on even the lowest doses. Zoloft has been the only one I have been able to tolerate. I am toying with trying Amitriptaline agaian, but the last time I did that it wasn’t a pleasant experience. My family doctor is uncomfortable with Paxil because of the terrible reaction I had to Prozac (her words not mine). Erika Take out the trash to email me

Response:

I have a sensitivity to anti-depressants. I tend to get manic on even the lowest doses. Zoloft has been the only one I have been able to tolerate.  I am toying with trying Amitriptaline agaian, but the last time I did that it wasn’t a pleasant experience. My family doctor is uncomfortable with Paxil because of the terrible reaction I had to Prozac (her words not mine). Erika Take out the trash to email me

Response:

I just wondered when I read your post.  You mention you get some relief with your Zoloft, but you can’t go higher because of side effects.  Have you tried a different antidepressant like maybe Paxil?  Just wondered. Michelle

– Hide quoted text — Show quoted text – Oh I wish I had some suggestions, but I am also in the same boat as you. I just had the 3rd neurologist write me off as untreatable. My list of meds tried is the same as yours (except that I am in Canada, and a few of those aren’t available here). My prevetative is a paltry 50mg of Zoloft taken at night (I get the rare side effects of Zoloft when I go higher, but if I quit taking it my miugraines get considerably worse). I am classified as allergic to the triptans (aniphilaxis with Imitrex). I have sufferred with migraines for 10 years now. The last 4 have been with intractible daily headache. I have tried seeing a naturopath – but my insurance ran out on that and I can’t afford to continue. Really – "the migraine diet" was all that was really reccommneded and it helped with the food related migraines that I didn’t know I had. I am considering a craniosacral therapist as soon as I can afford it (January maybe), and maybe a Reflexologist. I just wanted you to know that you are not alone Erika Take out the trash to email me

Response:

Oh I wish I had some suggestions, but I am also in the same boat as you. I just had the 3rd neurologist write me off as untreatable. My list of meds tried is the same as yours (except that I am in Canada, and a few of those aren’t available here). My prevetative is a paltry 50mg of Zoloft taken at night (I get the rare side effects of Zoloft when I go higher, but if I quit taking it my miugraines get considerably worse). I am classified as allergic to the triptans (aniphilaxis with Imitrex). I have sufferred with migraines for 10 years now. The last 4 have been with intractible daily headache. I have tried seeing a naturopath – but my insurance ran out on that and I can’t afford to continue. Really – "the migraine diet" was all that was really reccommneded and it helped with the food related migraines that I didn’t know I had. I am considering a craniosacral therapist as soon as I can afford it (January maybe), and maybe a Reflexologist. I just wanted you to know that you are not alone Erika Take out the trash to email me

Response: