Pain Management Community

Wow, Jane,
I'm so sad reading about your difficult plight.

I am a bit confused, though.
I think you write that your husband has seizures. Is he not being treated with anti-seizure medications?

Has he had a recent MRI?

I do not understand this statement,
" I read all the time about triggers medicines other peoples histories."

I do hope you'll write again. There are so many kind and knowledgeable people on this message group.

It sounds as if you're so devoted to your husband. He's fortunate to have you.

Bet

Has his neuro or pain management MD mentioned a second occipital nerve stimulator? Someone correct me if I'm wrong, but isn't this modality used for intractable headache?

Thank You YES not to toot my own horn but he is lucky LOL and he does know that too. MANY ER Dr and Nurses and Healthcare poeple have truly I think (I hope not) written his pain/condition off. I pray I'm just frustrated saying that Truly His new Neuro is very nice.
to answer some of your questions about my statement. His pain gets so bad OVER a 10 he has seizured out.
1) YES he has been on also many different seizure meds too Depakote (which he really did not like being on) others so many to mention.
2) His last MRI was done, in Augusta, GA about 1.5 yrs ago. A CAT Scan done @ a ER about 6 mons ago (EMTs thought MAYBE he had another Stroke Thank God NO) Just before I got laid off (I do have a new job @ Memorial Hospital in Savannah) He was to have another MRI done BUT of course I lose INS so NO MRI. My NEW Ins will not start until 1/1/11 AMEN.
YES I am making sure His Neuro does a TOTAL work up again, Maybe even a PET if that would help.
3) I have read all about triggers, medicines, other people histories of Migraines, is what I should have said, the ONLY difference is HIS started AFTER his Stroke in 2005 and not in his teens. Honestly EVERYDAY he has a headache and becomes a migraine at least once a week. Thank You again I just feel so bad for him he is in so much pain. There has got to be an answer! We would even be more then willing to travel wherever for an answer! If he had to take a Pill or 2 everyday fine BUT Please Which ONE's to take?

Have you considered the Mayo Clinic?
Perhaps you can do a Google search and read up on this fantastic hospital. It's in Rochester, MI.

If I was in your position I'd do anything I had to get my husband to Mayo.

Please write again. I've been thinking, since I read your post last night, about how awful this must be for your family. I have been given so much support and compassion here, on this site, and I hope that you get some answers and comfort.

Take care,

Bet

Headaches can come on at any age, I started having migranes at age 35, never used to have headaches at all. Obviously, his stroke triggered his headache. I would go to a big medical center/teaching hospital. I went from Reno, NV down to San Francisco to UC-SF and had a neuro consult done there.

Best of luck to you both.

Take care, Annette

Thank You Wow your the 1st person to say your Migraines started at age 35.OK. YES I worked @ a Teaching Hospital now interestingly enough. 01/01/11 I have NEW Health Ins, and YES He will have a NEW Work up done @ Memorial Hospital. Memorial also just recieved an adward for having a Excellant Stroke/Trauma Center. So I knoe God got me my Job there to help my Husband. Like I said before his new Neuro and also Pain Mgt Dr are both very nice. What Surgery Beth are you having? On many trip to the ER my husband and I both said "if there is surgery Please Do IT! I know no one wants to go in for Surgery its always a last resort. But truly WE especially Him on at our wits end. Thank You I am truly trying everything I/we can for him.

Beth,
What Surgery are you having. My husband and I have asked many ER Doc's "if there is Surgery Please Do IT" No One wants to have Surgery I know its truly a last resort. BUT everyday with headache/Migraine Pain, there has got to be something! Pills just seem to be never ending! My husband is even on Durogesic Patches (he changes it every 3 days). Even they are not working. Get well soon Speddy Recovery too.

Jane

Beth is having a spinal cord stimulator put in to help manage her pain. I have never heard of having one for headaches though. I don't know of any surgery for headaches unless you have an identifiable tumor or something like that.

Botox has been approved for use for migraines now, has he tried that?

Learn all you can about headaches and their treatment. There is lots of new material out there. Go over his meds with his doctor when you get the insurance coverage, see if any of his meds can cause rebound headaches or chronic daily headaches. Is there any kind of drug that he started taking right after his stroke that could be contributing to these headaches?

Take care, Annette

Thank You for getting back to me. I heard about a Spinal Stimulator. Interesting enough I myself have a very bad neck, MY C-4 to C7 have been fused together in 07/2004. NOW my C-3 is causing me trouble. I have been told by my Orthorpedic Surgeon there are 2 options. 1) a Spinal Stimulator inserted at the base of my neck to control pain much like a pacemaker helps the heart regulate beats. OR 2) go into my Neck again and reconstruct the back port (sort of like a cage on the back of my neck). So my Husband too has been told about the Pain device implanted into the base of his neck. BUT my issue with that is truly its a glorified pain killer, and what if the "device" itself causes problem? Of course We need to do more research and have a specialist explain in detail whats up with it and etc.....
My Husband does have a calcified damage area in is brain from the Stroke. Where there MAYBE could be even more damage behide it. It would take a better MRI then what he had done about 1.5 yrs ago to see what's there. Maybe that area could be surgically worked on. Problem is that area is too close for comfort to other vital areas, too many serious issue can happen when working in that area.
We plan on having a TOTAL WORK UP done in January 2011, for me too! My neck is pretty bad too. My husband has pain everyday, me not EVERYDAY. I hope Beth is doing well interesed to hear how "it" and she are doing? Thanks for the concern again.
Jane

I am not sure that the spinal cord stimulator that is used for spinal pain would work for your husband's migraines/headaches. I don't recall it being good for brain issues at all. Perhaps there is something else, you might have him see a pain management specialist that handles both interventions and non-procedure type treatments.

An SCS may or may not help your neck problems though. Please keep in mind that you saw an orthopedic SURGEON about your neck so I would expect him to offer you surgical options. I would also see a neurologist (not a neurosurgeon) and ask what other non-surgical treatment options may be available for your neck. You might also see a pain management specialist who handles both interventions, and non-interventions like therapy, CBT, biofeedback, acupuncture, oral medication management, etc.

I have had one disectomy in my cervical spine, and have another herniation, and some bulging discs. I would not have any kind of surgery for pain alone, only for functional problems. But that is just me. Everyone has their own take on things.

Take care, Annette

My daughter has lived with migraines virtually every day for over 20 years. Devistating! Sumatriptan works some. Massages help. Chiropractic worked for three weeks then...nothing. Acupuncture helps but we stopped. Book: Heal Your Headache: The 1 2 3 Program by David Buchholz describes her problem identically. Shows that for a small percent but lots of people, there's no cure but you can do things to cut down frequency.

The FDA recently approved botox for migraines so it's covered by insurance. Has to be done three consecutive times, 3 months apart. If it works, surgery to cut the nerve endings around the eyes (where Botox injected) has good chance of being a cure. Are you watching common migraine triggers like food, atmospheric pressure? Some foods will cause a trigger one day but not next week but again the following week.

We're getting ready to try Botox. At best will reduce frequency and severity but not a cure until/unless surgery.

Best wishes!

Sorry to hear of your husbands pain. I know what it is like to suffer from daily migraines. I had my first migraine right after I had my first child, I was 24,,, the migraines were under control then,,, but something went awry and 7 years ago. I started having migraines daily... it went on for months,,, I saw many Neurologists,, and none of them could help... I went outside of my HMO to a neurologist who uses Botox on every migraine patient he has, Right away I found relief,,, and over time the relief builds more and more success,,,, so I went from Migraines every day for months, to 6-10 migraines every 6 weeks,,,, I also take Topamax,,, very helpful for me... So maybe you can consider this for your husband. I wish you all the best.

I am sorry to hear about your plight, as well. Trying to have a physician understand what you are going through is like pulling teeth without Novocaine. My experience is that if you go to a physician and say that you are having a particular pain possibly stemming from "this or that", they will only focus on that pain and how it might relate to "this and that", not probable causes from elsewhere. On occasion, complaints that are seemingly related might not be at all, except that the occurrence was at the approximate same time. I have two possible reasons for your husband's headaches which I have not read any mention of here, but let me tell you first that I too had horrible headaches for nearly six years and not one physician could figure out what caused them; there was no set time they occurred, they were not affected by weather conditions, no allergies, spine was not misaligned, and I wasn't under any undue stress. The points of my headaches were always at the base of the skull and radiated up and around to the front of my head near my eye, where it felt like a dagger was being used to hold it in place. Always in the same area, and sometimes referred to as "clusters" in migraine lingo. My Mom has migraines so I thought that at year 40 I just happened to draw the short stick and should plan on having them too.

After years of having to put up with the shoulder-shrugging physicians it turned out purely by accident during a routine hearing test, that I had two osteocytes growing in my outer ear pressing against my ear drum and they were causing my horrid headaches. Have you gone to an otolaryngologist (ears nose and throat) to see if there is anything in their area of expertise that might be amiss? How about a dentist, I understand teeth can cause horrible headaches too without actually hurting inside the mouth (referred pain)? Perhaps a seizure caused a clamp-down of the teeth and an unknown crack now exists?

I apologize if this sounds like over-simplifying matters and I do hope that the problems you and your husband are facing are resolved quickly.

Thank You you are most likely the 7th person to mention to me Botox. YES In January My husband and I will check into it. Yes my husband tried topomax again when the Ins went away so did the Good Treatments. Topomax worked but then that to stopped. Its almost like as soon as something works BOOM! it stops. Its like he builds up an immunity to it or something. Really even the Pain Meds aren't working now. He has a Pain Patch (50 mcg durogesic every 3 days he changes it) PLUS his Oxycontin and Ativan. Truly the man and I have tried everything. January since I work @ a Teaching Hospital now anyway, Memorial Health in Savannah, GA. HE WILL have evevry test they can perform on him, even a PET Scan if need be. If there is surgery I want it for him (oh so does he lol) Thank You for all the advice He and I WILL be looking into everything.

Jane