Tuesday, August 31, 2010
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.
Sunday, August 29, 2010
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??
Friday, August 27, 2010
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.
Sunday, August 22, 2010
I babysat my sister's Boston Terrier puppy Gracie (who is a year old this month) while she and her husband attended their grandchild's wedding. My brother-in-law suffered a very very bad stroke a few years ago, and they seldom go out anymore, as he is hemiplegic and movement is painful on that side of his body. This was quite an event for them to be away from home so many hours. It was a beautiful wedding, and their granddaughter was very happy they were able to attend. I was glad to babysit Gracie, she's a cutie pie pupperoni and tries to charm her way into many goodies. She is much younger than my brother's Boston Beanie, but they play together like a couple of puppies.
Dingo Dog Bone to eat, which she offered to me to have a bite after it was all yucky and slobbery. My dachshund Augie is the Dingo Dog Bone addict, and now has Beanie and Gracie hooked also! Every once in a while they would all get tired and come and lay by me and rest. Cute pups!
I get to visit with the A-Team and Dr. Hannibal Smith on Tuesday unless it gets rescheduled again. First time rescheduled I had to travel, second time Dr. Smith had a conflict. This will just be my second visit to this headache clinic, hoping I can get some new travel strategies to help me through this fall. I'm also going to visit one of my Dr. Dunce team for cancer followup. Hoping I won't get angry or frustrated for yet another conversation about how radiation therapy is not the cause of my leg problems, my incontinence issues, my pelvic pain issues. I have spent money I did not have trying to prove that the radiation therapy was NOT the cause and have come up dry. I am through considering other possible causes because it just gets my hopes up and I just don't have the strength to be disappointed one more time.
Dr. Sassypants the physiatrist wasn't much help with the legs after a promising beginning but he has definitely ruled out mechanical or arthritic conditions. Besides getting another nerve stimulator he recommended I study chronic pain and its effect on the brain/body connection but I have gone down the psychiatric mind over body route with The Headache, and have little desire to revisit for The Legs. I understand the issues with chronic pain creating permanent pathways in the brain, signaling pain even when the original injury has healed. I have the ability to ignore rather high levels of pain (because I compare most pain to The Headache and that's a pretty high bar), but actual physical dysfunction such as weakness and numbness are more the problem for me. I do have to admit that I feel my endurance had increased due to the physicial therapy exercises I am practicing. I hope to continue with physical therapy this fall when I have a little more time, and perhaps get with their pelvic pain specialist.
Both Dr. Sassypants and my PCP talked with me about just quitting work, but I'm not ready to give up yet not only because I can't afford to quite working, but because my employer is really great about trying to work around my limitations with me!! If I can contribute, I will continue. If I feel I am not able to contribute anymore then I'm not sure what I'll do. Sigh.
Looking forward to next week, and working with our new team member at work. I haven't had a lot of energy today, but am hoping to work with my insomnia and finish some files for a client tonight. Sometimes it doesn't pay to fight my inability to sleep and just go with the flow and do something productive when the brain allows!
Friday, August 20, 2010
Thinking of going to the Big Rock Candy Mountains for a mind vacation. Would love to see the lemonade springs and never have to change my socks! You get to sleep all day too!!
Thinking maybe there is an issue with The Headache and sleeping lately. On average I got three hours sleep a night this week. So tired I am jittery. Gonna think happy thoughts about the Big Rock Candy Mountains and go to sleep dreaming about it!
I will be traveling to the southwest again in September, and then switch gears and go to the northern Midwest in October. Hopefully that will be the end of my travel/training for a while! The boss gave me the good news that our new team member starts Monday!!! The new guy interviewed wonderfully, seems to have a great attitude, and is ready for an adventure and some travel. Hopefully after fully training him, I won't have to travel anymore unless absolutely necessary. Woo Hoo! Big Rock Candy Mountain kind of day indeed!
Thursday, August 19, 2010
I have been in brain fog mode all week, but today seemed extra bad. I got to work an hour late (apparently all that pressure to BE ON TIME the other day wore off due to almost no sleep at all and less caffeine!) and then locked my keys in my car. That's generally OK because I have one of those door key/car alarm beepers that I can click and electronically open the locks, & I keep that attached to my purse, however during my trip I put it in my luggage after eeeeking my car trunk open with it in the long term parking lot, and my luggage is still locked in my trunk. Luckily I had an extra car door key at home (40 miles away) and my sister was kind enough to drive all that way just to bring it to me so I didn't have to call a door unlocking service and cost me $50.00 to get my car keys out of the seat.
It was one of those crazy days when everyone does a melt down - customers and co-workers alike - so I wasn't alone in brain fog land; I kept bumping into fellow fog bound travelers through out the day. I stayed late tonight to make up time, and actually was able to think two coherent thoughts in a row when I had no phone calls coming in.
My co-worker who stayed behind at the clients this week lost all his possessions in a fire at his apartment complex here. He is such a nice guy, he said all his good clothes were with him, so not to worry. He wouldn't come home because he had a mission at the client to complete. I sure hope he takes some time off when he gets back! His very nice daughter has been coordinating donations from his friends here at work and through out the city to get another apartment setup and ready for him to come back to this Saturday, but there are probably insurance adjusters and everything else waiting for him to get back here. There were 10 families displaced by the fire and no one was injured, which is a miracle. The roof caught fire from an electrical short and part of the burning rafters collapsed into his apartment, pretty well destroying it. Maybe it is a good thing he stayed behind at the clients, because he could have been home when the fire happened and the roof fell in.
Ready to go to bed soon, very tired, and I am determined to BE ON TIME again tomorrow. Too many things to do and not enough days to do them.
Wednesday, August 18, 2010
Monday, August 16, 2010
Attaching a picture of the lobby of a neat old hotel we ate at while I was away for work - it was quite unexpectedly elegant with Tiffany stained glass skylights and windows, marble colums and gilt decoration. You do get to see neat things when you travel, but I don't think my body is capapble of keeping itself workable on the road anymore.
Friday, August 13, 2010
Creepy Crawly Critters
Have had to complain to hotel management again. This time the bugs were on my bed. I have just gotten through ripping up my bed and shaking out all the covers. I don't know if I'm going to get any sleep tonight at all and am much too tired to change rooms. I did call the night desk and told them I am going to insist on an adjustment on my bill, since I complained Wednesday or rather Tuesday evening, and they were supposed to exterminate them but here they are again, off the walls and prancing around my covers.
I have the shivery skin crawling heeby jeebies, but I just have to stick it out this one more night, with check out tomorrow, and then a night in Tucson (praying for no more bugs!) waiting on my Saturday morning plane ride. I have a dread of palmetto bugs which seem to thrive in warmer climates, but hopefully won't have any of those invading my room. The bad part is this is such a very nice brand new hotel and I seem to have gotten the bug room. No one else I am traveling with is having these issues. I refuse to pay full price for a buggy room, I don't care if the client is picking up the tab.
Thinking of sleeping on the couch in my room, but it may be full of bugs too. Making my skin itch just imagining it. At least they don't seem to be the biting type of beetles. Maybe the extermination effort just drove them from the walls into the bed and couch. Ick!
Ended up today very sick feeling, so skipped supper this evening, and just rested and packed my luggage for checkout tomorrow. Almost got physically down to where I couldn't pick myself up to go today. Really need to spend more time here, but physically I don't think I am going to be able. The Legs are not cooperating, nor is The Belly, and The Headache has been trying to interfere the last two days. One more day I tell myself, and it will be a short day because my associate that is driving us to the hotel by the airport needs to come back tomorrow evening. And after that a loooong day of flying and airports.
Gonna have to pick up the pace tomorrow to get done what needs to be done. The clients have been wonderful, making very good decisions about conversion issues and future planning. I only have to explain one time and they fly with it. Just hope they keep asking questions even when I am not physically here to answer them. We expect a large number of support issues in the first three months after system installation is complete as people start using the system more fully. Plus the Spanish just makes it seem much more fun, why I don't know. I think it is because they are just a fun crew, English or Spanish language.
Going to try to go to sleep, but am sorta not wanting to turn off the lights because I won't know where the bugs are at. Big Sigh......
Wednesday, August 11, 2010
I fell in my hotel room yesterday morning because my lower legs are somewhat numb yet I am having increasing pain at the same time. Banged up my knee and injured my pride but it's a sign how dangerous having numb feet with poor reflexes can be. Third day of travel and standing and I forgot my cane this morning. I will be sure to remember it tomorrow.
I am so tired that I try to sit as much as possible while working at the client. They are such nice folks, and have been super fun to work with - quick learners. I just wish I knew more Spanish because I can pick up a word here or there from the Spanish speakers but its a mystery to me exactly what they are saying. For some reason, just hearing it in Spanish makes mundane comments sound like such fun! I am envious of people who can speak more than one language fluently. I think it shows great flexibility of the brain and mine is about as flexible as a deflated football.
I am staying at a very nice, new hotel, but there are bugs - some kind of little beetle - running around my room tonight. I have killed several until I just don't have the heart to kill anymore. Too big to be bedbugs, they remind me of box elder bugs back in Missouri. Just giving me the creeps....I just know one will crawl on me when I'm asleep. I'm sure they are harmless, but ick is all I can say.
Have tried to eat at restaurants the last couple of days. Can't do it - The Belly doth protest and the hives have started swarming, along with the bugs in my motel room.
I am extremely fatigued which is why I have been trying to eat - I am very hungry so thought maybe that is part of the reason I am so tired. I haven't been too successful the last two days, as nothing is staying with me. Just wish I could sleep better and have more energy.
The legs are not happy tonight because I forgot that durn cane. I may medicate - hoping that I will wake up in plenty of time tomorrow. Wishing I could get warm and stay that way!
The bugs are increasing, so I called the front desk. I'm too tired to move rooms, asking if they could have someone spray tomorrow while I am gone. The front desk guy said don't squash them, they are stinky. Uh oh, too late. Might not get very much sleep tonight, not sure if I want to sleep in drugged slumber while the attack of the stinky box elder looking bugs progresses! Big Sigh.