Mind Zapping Monkeyshines

The Klonopin Must Go

The last few months I have been taking clonazepam in order to sleep better [which in theory will decrease my overall pain levels] starting at .5 mg, then 1 mg, and this last week have been increasing it by .5 mg every other night until I was up to 2.5 mg.  The instructions were to increase it until I got a good night's sleep without waking up at 2 AM and without feeling drugged in the morning when I got up to go to work.

My overall headache pain levels have been increasing all summer long and last night I finally made a correlation between the increased dosage of clonazapam (Klonopin) and the growing pain.  Not only did I have a headache on the bad side of my head but I was starting to get an overall headache all the time.  I stopped the clonazepam last night and woke with much less head pain.  Headache, or a hangover type headache, seems to be a fairly common side effect for this medication.  Just my luck.  If sleep comes in short shrift (like last week) I may try taking it again. 

Got a good day's work done today, even though I had to delay going to work in the AM because The Headache itself was not behaving.  My "entire head" headache was gone, but The Headache decided that this morning was its day to play.  I finally lulled it back to semi-sleep with ice and then drove to work.  It's always a gamble on days like today if I will make it home from work, or just make it to the ER.  Hoping that when the clonazepam totally gets out of my body (which may take a day or two) The Headache will calm itself down, and I won't feel like such a wilted lily.

Have been trying to control my nervous system with my biofeedback CD.  Mostly I am just having trouble controlling the CD player which is wanting to skip.  Of course this is not conducive to being in a meditative state so I guess my nervous system is just railing about out of control wrecking havoc throughout my body.  I did changeup my occipital stimulator settings today to see if that might jog the brain cells to quit colliding.  It's somewhat like a nuclear explosion - when the bouncing brain cells collide enough times I hit critical mass and The Headache explodes.

In the news today was an article about the discovery of a genetic difference that many common migraine sufferers (like me for years and years) share concerning the storage/usage of glutamate. Glutamate and nitric oxide work together, and apparently glutamate can start cascades of neural signalling which effect diseases such as epilepsy and autism.  The article states that an overload of glutamate may be why the migraine begins, essentially sending too many signals to the synapses and starting the migraine process. The researchers hope to find a way to inhibit the overload or to prevent the resulting signals in order to control migraines without aura (common migraine).  Since a lot of research and  many medications are geared to migraine with aura because there is a warning that a migraine is going to occur, new medication options for migraine without aura would be a great stride forward towards controlling this disease.

Biofeedback Brain And Dr. Jock Biodude

Trying but Not Too Hopeful

Two years ago I went through two months of 3 times a week biofeedback training.  I got really good at relaxing muscles, controlling breathing, learning to use visualization to increase control over autonomic functions.  However for The Headache biofeedback really didn't work too well.  Pain levels went too high too fast - zero to 100 in the space of a few minutes at times - and I couldn't go to my happy place when I was too overwhelmed.  It did help some with keeping my breathing calm and my anxiety levels down so it was not a totally wasted effort.  This was totally "monitored" biofeedback where I was hooked up to a computer during my sessions.  I still use it when I feel overwhelmed physically.

The A-Team has psychologists on staff, and they seem to want everyone to practice biofeedback.  I had my first session last Friday, and it didn't go so well.  Number one, the office manager had spent a half hour of my time demonstrating the headicing machine which I told her would not work for me (too noisy, too big, and it seemed to be on the leaky side although it cooled and heated the recirculating water really well plus it had to be strapped to my head which bothers the supraorbital nerve pain I have), then some kind of migraine cap.  I DON'T HAVE MIGRAINES ANYMORE  I wanted to shout...I tried to explain that when I ice my head I use four (yes 4!) ice caps with ice and water in them to cover the area needed.  She did suggest I create some ice caps by sewing some covers and filling them with unpopped popcorn and keeping them in the freezer which was a useful and thoughtful suggestion (but I think she could tell I was a hard sell on the other equipment). 

After all the sales pitches I met the biofeedback dude [Dr. Jock Biodude]: he was very nice but he used sports analogies.  One of my pet peeves is when people (mostly guys) cannot discuss anything unless they use sports analogies (going for the three pointer, you have to take the first step to win a marathon, touchdown! etc. etc. etc. ad nauseum) so unbeknownst to him this prejudice made it very difficult to hear what he was saying because the sports talk interferred with my concentration.  I was in a bit of peevish mood by then.  I'm sure he could tell by my body language when he started talking about how we have convinced our bodies we are sick and that biofeedback will stop the cycle that I was not into his brand of hoo hah.

I'm not a fan of magical thinking, whether it is "I will be good and God will be good to me" or "The proper mind set will cure you" or "taking this special supplement will fix everything".  I'm a cynic by nature, an optimist by choice, and practical to the Nth degree.  After the session of biofeedback with tinkly new age music and lowered lights, my temperature dropped instead of raising.  You are expected to have a little thermometer taped to your finger to measure your temperature. Dr. Biodude said it was a sign I was not in tune with my feelings and living too much "in my head".  I'm sure he should have been able to easily see me raise my eyebrows each time a tinny sports term popped into the biofeedback reading which made it very hard not to live too much "in my head", but the drop in temperature probably came from his super cold air conditioned office where he sat with an undershirt, shirt, and tie on and I had on a thin summer weight blouse.

I told him that I am like a rabbit in a steel trap.  I will gnaw my foot off to escape the trap not idly sit by and accept the trap, feel the trap, and embrace the trap and then imagine the trap has disappeared while the hunter comes to dispatch my rabbity hide.  It's not in my nature BUT I will do the biofeedback 2x a day for the next three weeks.  I will try to embrace the moment and not live too much in my head: at least the recording he gave me doesn't have any sports terms on it so far.  I will attempt to be more open minded about it.  The other form of biofeedback training I had was much more guided and specific to me, so maybe I just prefer that method of teaching.  Don't know, but I do know I don't have a lot of patience for nonsense so I am hoping I will see some positive results.

I have been more heavily drugging myself with clonazepam to get a full nights sleep per the A-Team's plan. I am supposed to titrate up every other night until I get past the night time pain and insomnia issues. There will be a limit there I will not go past either.  I can take quite a bit of pain if the alternative is too many drugs for very little benefit.

Botox injections were mentioned, but after asking some people in my urticaria group (hives) there were no positive comments about botox for people with chronic hives like myself.  Some had bad reactions, and no one had a positive experience.  I'm going to save the Botox for  some desparate future time.  The A-Team is just going to have to get by with regular office visits, no extra sales of special equipment, and no big lots of biofeedback training fees.  They seem to be used to persons that are at the melt down point there, which is very sad for the regular new patient who has not been receiving adequate care elsewhere, but it takes quite a bit to get me to that point.  As long as I have a plan, I'm pretty well good to go.  If they keep up the sports talk, I may get to a different type of melt down point and grab someone's tongue and pull out their belly by the roots.  But maybe that's the menopause talking, eh??

I Love It When A Plan Comes Together

New Headache Clinic: The A Team

Saw my new headache specialist this week, I think he's gonna be a keeper.  Long interview process for the first visit with both the nurse and my new doctor.  I think I'm going to call him Dr. Hannibal Smith, after the A-Team leader, because he definitely has a plan for treatment.  Instead of giving me the Mission Impossible speech or the One Flew Over the Cuckoo's Nest song and dance he came up with not one, but four different strategies for us to look at!

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!