Seeing a specialist

[Captain Deb]

Just a question as to how many folks out there that have suffered from post-treatment headaches have sought treatment by a headache specialist or have gone to a pain clinic.

I see Dr Marshall Freeman at the Headache Wellness Center in Greensboro, North Carolina. He first gave me trigger point injections on 3 occaisions to tide me over till the Neurontin kicked in. I'm on 2700 mg of that a day, plus 2 other drugs--Metoclopramide for neck pain and Imipramine, an antidepressant which works on dopamine receptors. He's also trained me to give myself Imitrex injections when I get struck by a brainwreck (You know what those are if you are snooping around this headache area!)which is 2-3-4 times a week.

I think all this stuff helps alot--I still use tramadol 4-5 times a week, but no more heavy narcs like Vicodin.

Please share your experience with your specialist here--I think it would really help any newbies with headaches to get on the right path to finding some relief.

Hugs,

Capt Deb

[Brendalu]

I am seeing a new neurologist who specializes in head and neck pain.  Right now I am on 100mg Topomax and 100mg Imitrex.  The Imitrex makes me so sick and dizzy that I would almost rather be clawing the walls with headaches.  Mine are down from six days a week to four to five.  I go back on the fifteenth so I'm praying for something.
Brendalu

[Static]

I'm scheduled to go to a neurologist on the 19th of February.  I had seen him about 2 years ago, long story, same old stuff.  Anyway, just going to do that for now until the weather breaks and I can get into the city to the headache clinic.  I have to take the train (I could drive but I can also pay $20 to park and that isn't happening) and I'm a big weanie when it comes to the cold weather so it'll have to wait until spring!

[Janet]

Thanks for this thread Deb. I remember how desperate and frustrated I was before I found the right kind of help.

Headache treatment is a specialty. Based on my experience, those suffering from headaches will find the best treatment at a headache or pain center even though it is not specific to the AN problem. Not a cure, but my quality of life has improved from treatment there.

I go to a headache clinic associated with a medical center and am being treated by a neurologist that specializes in headaches. I am in 2 migraine studies that are not specific to ANers. One is a Botox study and the other is testing the visual capabilities during magnetic stimulation of people with migraines. I was given the diagnosis of hemicrania continua which sounds like a "catch all diagnosis" but is actually very specific and is exclusively responsive to Indomethacin. It was spot on, in my case.

Previous to treatment (one sided)
1) migraines behind my eye
2) dull aches off and on all day
3) sharp severe pain in the back of my head lasting 20-30 min off and on durning the day
My whole day was trying to avoid headaches or having one.

Now, with Botox, Indomethacin, heat and better posture.
1) no migraines
2) no dull headaches
3) still get sharp pain in the back of my head but not as severe and not as long and only when the Indomehacin is wearing off or a
     lot of bending over.
I don't think about headaches most of the day, only when the Indomethacin is starting to wear off which is twice a day.

Neurontin and Trileptol decreased my energy and sharpness and didn't help my headaches. I don't think I really reached a theraputic dose to make it work, though.

I think this is a fairly new field and there seems to be a lot of studies and new approaches being tried.

Janet

[badkins]

I have been having migrains almost daily and finally seeing a neruo. pain specialist. I have been taking topamax250mg, valuim 30mg daily, imiterex shots as needed almost daily it seems inderal, effexor, percacet 3x daily since my surgery last Jan 06. No one can figure out why my migrains are so dibilitatting. I have not reterned to work and I have almost lost my carreer. My AN can back and I had Gamma knife done at UVA in September. Hoping my migrains would lighten up they only have gotten worse.Any hope coming to me. I have read these post I never had a migrain prior to my surgery all on my AN side be hind my eye.
Beth

[staypoz]

I see both a pain specialist (anesthesiologist) and a headache specialist.  I have had botox injections, trigger points injections, nerve blocks, dorsal root ganglion blocks, and accupuncture.  I have also seen a hypnotherapist (m.d.) and self-hypnotize at least two times daily, and now only see a physical therapist and massage therapist as needed.   

Because of another medical condition, I am limited in the drugs I can take.  So, I take motrin on a daily basis and prilosec to help protect the stomach.  When needed, I take an anti-nausea drug whose name I don't remember.

There doesn't seem to be any one treatment that works for all, but there is relief to be had.  I think one of the most important things is to find competent and experienced specialists who are willing to try a variety of approaches.

Staypoz

[ppearl214]

it was recommended to me by my team at Brigham Women's in Boston about going to the Head Ache clinic locally. Since most of my headaches are Chiari 1 related, with some AN related, I have yet to do so. I am meeting with B/W next week.  Will inquire again. I think I need to.  Imitrex has become my new best friend.

Phyl

[Captain Deb]

Oy, poor badkins!
I feel for you, I really do. I know from experience that over-use of pain meds, especially the narcotics, can cause rebound pain. I hope you and your neurologist can find you some relief. I spent 2 1/2 years with those kinds of excrutiating migraine-type headaches and no relief except the narcs and then they sort of stopped working very well. Is this person a pain specialist? My neurologist is the person, along with our dear Janet, who finally sent me to the Headache Wizard.You are on the right path now!

Big Anti-headache Hugs
Capt Deb

[badkins]

Thanks Capt Deb,
I am really hopeing for a break through from this pain managment without more narcotics. I went once to a pain clenic I was so dooped up they had no idea what thet were dealing with. This new one is suppose to deal with only migrain but hopefully we have success. I thought I was alone untill I came back onto this web site. Then I found my clones.
Thanks for the support I need it.
Beth

[marjoryb]

I'm seeing a neurologist now who has me on a mix of drugs - none of which seem to work.   My headaches are so intense (especially  at night) that I feel like my head will explode.   I never know when they will hit but I get 2 to 3 per day.  When the headache hits me, I'm in such pain that I just sit or pace and moan until the narcotics take effect and I count the minutes until that happens .     Some nights I'm awakened with headaches and sleep very little, some nights I can get 4 to 5 hours of sleep.

I made an appointment today for acupuncture.     

I take gabapentin ( substitute for Neurontin) and have narcotics for pain.   I also take a beta blocker.   

I spend my entire day (and night) battling headaches.   It takes me most of the morning to handle the process of daily living - shower, dressing, etc. - and I am usually up by 5:00am    I'm exhausted and near tears (out of one eye) all the time.... not to mention, I'm dizzy from all the medications.   I can't go far from home; I'm hardly able to work ; my energy is zapped.    I feel absolutely terrible and want my old self back!!!

marjoryb

[Captain Deb]

marjoryb--check out this link
http://www.clusterheadaches.com
also, when was your surgery and what approach/size?

Capt Deb

[marjoryb]

Thanks Capt. Deb.   It seems you are THE source for headache information.    The stories on the link you sent  sound like what I go through at night .  I've been absolutely miserable and , like those case studies , I hate to go to sleep because I know I'll wake up with killer pain.     I can't wait to find relief or get out of this cycle.    The acupuncture  today helped a little - I go back on Friday.     Thanks for your help.

marjoryb

[Janet]

The Cluster Headache site was helpful. I could relate to some of the symptoms  but mine really fit more under Hemicrania Continua type headaches. (Google for lots of info). The main difference is that I cannot move when I am having a quick start and quick stop attack. It feels like I am being shocked on one side in the back of my head. I cannot even move my mouth to call for help for the really bad ones. Rocking back and forth would make it worse. I don't get any tearing or nasal symptoms either.

I wonder if Retrosigmoid approach and Mid Fossa approach are associated more with one or the other type headache.  I wonder if post Translab headaches are different yet. 

badkins, marjoryb, Hang in there. Trial and error is a hard process but it seems to be the common thread of those finally getting a little relief.

Janet