He knew about my condition (hemicrania continua). He didn't have to look it up in a book or tell me it didn't exist or that isn't what I have. He said the pain is on the very severe scale of headache pain (which I already knew) and there aren't a lot of medications that work with it, and that it was doubtful that any new ones would be developed because there just aren't enough of hemicrania continua patients to make it profitable. However, he is going to some big headache conference in a couple of weeks, and he is going to ask some other headache specialists that deal with more hemicrania continua patients to see if there are other treatments that might work, and check on how effective a couple of his ideas might be for HC. He also said he would check to see if there were any clinical trials I could participate in that might be of help.
A medication change, the addition of Klonopin (clonazepam) at night, is already helping my sleep. I did wake up at 2 AM like always, but I was able to go right back to sleep - a big improvement over most nights. Hoping I won't have many adverse side effects from it. I am also going to try taking phenergan/benedryl on a schedule proactively before The Headache gets out of hand. I have a headache diary to keep, and will start checking to make sure The Headache is still in the three to four day pattern it has had for the last three years. If so, I will take my phenergan/benedryl combo on the projected bad days not waiting for The Headache to wake up and ruin my day.
The Headache tried to get worse last night, and between taking the phenergan/benedryl pretty quickly and then the Konopin I was able to keep it at a distance. Hoping that it will stay that way for a while! Not so good this evening, but maybe tomorrow will be better! The Legs are better tonight and are not hurting quite as much. Hoping they will be even better next week.
A couple of the strategies he spoke of I am not so sure I want to try - one was getting Botox injections in my supraorbital nerve, and in my forehead and neck. Another was getting another stimulator installed in the supraorbital nerve; if I got that I would so electrical I think I would need to get a direct feed from the Hoover Dam to keep going! He said that Botox helps headaches not only by numbing the nerve, but also prevents the nerves from exuding an enzyme/chemical messenger that tells your brain to have a headache. Didn't know that, but I don't really want to have a limber neck like Stephanie at Head Wise ended up with! My Bone Head is too heavy for my wimpy neck already without the help of Botox to make it worse!
They gave me all kinds of information about migraines (even though I no longer have them) which was nice. I was told to avoid all artificial sweeteners except Stevia, as they all seem to contribute to headache pain. I don't use artificial sweeteners so I think I am OK on that score. I am sure about 98% of the patients they see are migraine sufferers and they sure give you a lot of really good literature to take home about migraines. It was very interesting reading, and I learned a few new things about migraines from their booklet.
I give this practice an A+ (so far) and hope that I will be going there for my headache care well into the future. No perfumed magazines in the waiting room, no perfumed personnel, and no perfumed patients to ruin my morning. A very quiet and orderly place to go.
I am up late tonight because I delayed taking my medication because I was busy. Time gets away from me when I am doing something that requires concentration. Must be my Bone Head at work again!
Well, at least you have something to work with in regards to your pain dear one. Only wishing the best for you.
ReplyDeleteI never liked the A-Team, but the Lego video is cute.
Blessings.
I'm still undecided about getting another round of shots, because it has helped somewhat with the knots I have on my scalp, but it'll really depend on if I am feeling up to the month long recuperation. I'm sure it's not like that for everyone, every time, but we headache people have to be careful, amirite?
ReplyDeleteI'm glad you got a good specialist!
Dr Hannibal Smith sounds like a dream so far. I hope he continues to impress you. I like when our doctors not only have a plan, but have plans B, C and D lined up too. The sleep that Klonopin offers you will hopefully help you start feeling better right away. Good luck with your new doctor!
ReplyDeleteThanks friends!
ReplyDeleteJBR: Probably A-Team is on my mind because of the movie being promoted. And the doc is light haired like George Peppard.
Steph: Your writing of how it was day to day gave me information that I don't get when someone gets a shot and just says it works or it doesn't. Thanks for the info!
MP: I agree with the plan thing, because rarely does plan A work!!! A little too much sleep today, may have to cut my dosage a little until I get used to it!
Just waiting until the MrT character shows up there and tells me "I pity the fool!"
Don't you wish you could give the good Docs and practices a big prize or award. Encourage them to keep it up and motivate others to follow... They are truly worth a mint.
ReplyDeleteI agree! I went through so many bad practices that I distrust any practice before I show up. I think somewhere we need a "Gold Star" list of recommended practices. This doctor has a Certificate of Added Qualification in Headache Management (CAQ) issued by the National Headache Foundation. My doctor in Kansas City did also. Maybe that's the difference??
ReplyDeleteI'm excited you have a doc with a plan!! Good for you!! I hope it works out for you in the long run!! Wouldn't that be nice!! Goos luck!!
ReplyDeleteI sure hope so too. Was feeling I was out of options, so getting optimistic again! Whew!
ReplyDeleteGreat news, and how nice that there were no fragrances in the waiting room! Somebody gets it.
ReplyDeleteEven the hand cleaner they used had NO FRAGRANCE! Muy wonderful!
ReplyDelete