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??

Wishing For A Plan B

Plan A is not panning out!

Saw Dr. Hannibal Smith this week.  Unfortunately he didn't have a lot of good news for me.  Even among the best headache physicians in the country there was no consensus on how to continue to treat The Headache.  He asked about Botox and the response was mixed, so he told me we could try it but he wouldn't be able to predict the results.  I told him I would have to check into Botox injections a bit before deciding to having it done.  I have plenty of allergic reactions, and I don't want to have a three month battle with hives because I had to get Botoxed.  Plus I like having my eyebrows move, my face seems so much more human that way. 

The A-Team did an excellent job.  I was in the midst of The Headache, at the nausea stage when I got there.  Once I got back in a room, right away I was given a shot of zofran for the nausea and put in a quiet dark room.  Not used to that - normally I am tortured in brightly lit rooms, and cannot get anything for nausea etc until AFTER the doc sees me.  I am going for a psych eval to refresh my biofeedback training tomorrow and supposedly there is going to be some space aged ice pack for me to trial to see if I like it.  It sounds as if I won't be able to afford it!  Ice packs only cost a little bit and they last forever.

Saw my radiation oncologist today, Dr. Dunce #3.  He didn't tell me my problems are not from radiation exposure this time.  He did admit that I have thickening of the bowel walls which could be causing some of my symptoms (this has been present on my MRI's and CT scans since 2005).  He shooed the nurse out of the room and let me know he had gotten my lawyer's request for my records and wanted to know what I needed them for.  I explained I did not have a problem with Dr. Dunces care, but that the hospital had hired a physicist who didn't know how to do math, or probably use a computer, and had negligently provided no oversite for his calculations, and the physicist obviously did not double check his work, so I received an overdosage.  I am 4'11" tall. The report I was given said the brachytherapy had been off 4.8%, and standard deviation was 5% so they did not feel the difference was significant.  I told him what might be OK in someone of average height of is not right for someone of my stature - a couple of more inches shorther and I would need a booster seat to legally drive here.  I have still not been relased from his care and am to return in another year.

You know, I don't think I will gain one thing from my lawsuit unless it is the satisfaction that some lawyer somewhere is going to get a fat retainer from the hosptial until my case is settled or closed.  Take that Big Box Hospital!  I'll hit you where it hurts - your budget!

I am very very very tired - having only gotten a couple of hours sleep each night for almost the last two weeks.  Tuesday was a Bad Headache day and The Headache is still active tonight.  I am hoping maybe biofeedback dude might have something that will help.

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!