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??
Wow that biofeedback sounds complicated. You have all different opinions from all different sides it seems. I do not know enough about this technique. Thanks for sharing what you do know and have experienced. I am so sorry you have to go through what you do Winny.
ReplyDeleteJBR: your t. might know about a technique he/she cna recommend. It is scertainly very calming and allows you space to get your breathing and muscle tesnsion worked out. Very relaxing except when you get Dr. Jock "sports analogy" Biodude teaching it.
ReplyDeleteWith that kind of set up I don't know who would benefit from biofeedback. I guarantee the people who do have good results didn't learn it like that. Sigh.
ReplyDeleteAnd I really don't like that he criticized you because you didn't take to it like a fish to water. That's not okay and definitely not helpful.
I hope everything else is going better than that!
Thanks for the encouragement Diana Lee. The lack of good communication was partly my fault because I couldn't get past the sports talk, and I'm sure he didn't have a clue what was aggravating me, and I didn't have enough invested interest to bother to explain. Although my split second assessment of this guy is that communication would not have been a two way stree.
ReplyDeleteThe "you see yourself as an ill person" talk from someone I had never met before was a definite no-no for me. Expecially without any type of personality assessment or actually reading my file to find out I don't have migraines.
I see myself as a well person with an unfortunate penchant to collect maladies which I do not want and would be gladly rid of, not as a sick person who desires not to be well. So far the recordings seem to concentrate on conrolling your autonomic responses with none of the negative self talk, but Dr. Jock Biodude is not the person doing the recordings - thank heavens!
I'm curious where you went, aspects of it sound similar to the Diamond HA clinic, but other parts were different. I learned biofeedback there & it helps me relax enough to get to sleep.
ReplyDeleteFrankly, nothing pisses me off more than someone telling me what I think or feel about having chronic pain. If you knew me, you'd know that I'd do anything to be rid of this! It's so hurtful when people suggest otherwise.
I go to THE headache clinic here in Springfield Missouri -(not a lot of choice) I'd rather not name names you can Google and see if you can find it, email me if you plan to come here, and I will get more specific about which doctors etc.
ReplyDeleteThe doctors here know all the doctors in the main headache centers across the US and participate in the same research programs, and also have their own research branch, so I'm not surprised parts sound like Diamond. The majority of their patients are people with intractable migraine disease. I'm probably a minority of 1 with my headache problem being different (hemicania continua).
Dr. Jock Biodude has been my only negative experience so far, and he's a mere blip on the screen, and he definitely hit me on a bad day, so he may not be as bad on the return trip. He just doesn't seem to be Mr INTUNE with other people's feelings - it was sorta like - lets get this over with. Maybe he was hungry? He's a big guy and it was noon.