Piercing Pains

Guess They are Here to Stay

Went to see my headache specialist in Kansas City. I've decided to nickname her Doc Optimist as she has a very hopeful outlook and is quite cheery. Poor Doc Optimist was sick with a cold today, but she saw me anyway. What a pleasure the appointment was. I showed up 15 minutes before the appointment, went back to the room, was seen at 3:00 on the dot and out in 15 minutes, with my next appointment for January.

Discussed the problems I have been having to Doc Optimist, especially the piercing pains I have been having on the left side. She said that jabs and jolts headaches often appear with hemicrania continua, and now that the other pain is less I am noticing these. Unfortunately the only medication that works for the jabs and jolts is indomethacin which I can't take because it gave me pancreatitis and upset The Belly. I told her I could take the pain, I just have to bear down and deal with it. As long as it goes away at some point, I have pretty good pain tolerance. She said before we give up trying to treat it she had quite a few tricks to try.

I also described the right sided headaches I have been having. They are not migraines, at least not like the migraines I have had in the past. Doc Optimist does not think they are cluster headaches but said the hemicrania continua can switch sides. I told her that these are not continuous at least not yet. I would be horrified to get right sided hemicrania continua after whooping the left side. I hope they were just an aberration or maybe pancreatitis induced, since I haven't had one in about 10 days. Doc Optimist said if they continue we might try Relpax to see if they were migraine related instead of hemicrania continua related. She wants to see if a medication change will help first.

I told her I was not working full time yet, but that I had other health problems that might be interfering in addition to The Headache - especially The Belly at this time. Doc Optimist prescribed some vistaryl/phenergan to be compounded in a cream to be absorbed through the skin. She said that since The Belly is kicking a fit, I may not be absorbing medication properly and we were going to bypass the GI tract entirely. Now I have to find a compounding pharmacy...sigh. She wanted me to use suppositories but since I don't have an intact anal sphincter anymore because of the radiation induced fibrosis I told her that may not be a very good idea.

Doc Optimist had interesting insight on my cold spells that correspond to The Headache. She said many other headache patients have similar symptoms - either get really really cold or really really hot. She speculates that this is because the autonomic nervous system controls and the hypothalmus reside in the central brain area that is thought to be activated by severe headaches. She said even though I am not experiencing the pain of The Headache, The Headache is still there (which I could tell if I turned the stimulator off long enough!) and it is still creating the same symptoms - I have just short circuited the pain. I told her that my eye still swells and my nostril runs, so I knew that some autonomic symptoms were hanging around, not surprised the shivers were part of The Headache. I guess I will have to figure out how to deal with the shivers, Doc Optimist had no suggestions on how to help with this. Perhaps a lovely cup of hot chocolate or warm tea would do the trick!

I started off the morning with the remnants of Monday's headache, but The Headache got steadily better all day. Starting to get worse again now, but I have had a very long day with driving in wet rainy conditions so no wonder! I am going to medicate in a few minutes and hopefully won't be up till 3:00 AM with The Headache's siren call awakening me. Ready to go to work early tomorrow!

All in all a great visit, feeling that even if The Headache is changing (and I have hopes that the stimulator still has more magic to perform on the stabbing pains) there are steps to take and movement towards 100% normal. Now if Dr. Gnome's visit goes as well.....

KU Medical Center Day

I'm On the March to Painville

I drove to Kansas City today to see my headache specialist. Have had the appointment for a few months. Also squeezed in a visit to the Immunology department to discuss my horrid hives.

My specialist was pleased with my progress to partially functional, since I was coming from totally disfunctional territory the last time she saw me.

I told her that the Benedryl is having less and less effect, and she said that is a draw back for Benedryl. She prescribed Vistaril, another sedating antihistamine medication to take in combination with phenergan. She said the trammadol I was taking probably wasn't doing much good for the type headache I have, and I said it didn't do much, but was in assistance in sedating me when the headache got bad enough. She said the Vistaril should do the trick, even though it is a low dose. She also mentioned if the oral route of a medication doesn't help with a headache, sometimes it helps to bypass the digestive system, either as a suppository or as a specially compounded skin absorbing cream. She said there just isn't much that can be done for The Headache other than what we are already doing. She said she would like to see how The Headache does after the three month study period, when all the bells, whistles, and programming gets turned on the occipital stimulator. Me too!

The immunologist took pity on my hivey body and loaded me up with samples of some expensive medications. She also said I need to carry TWO Epipens with me. I keep one in the car at all times, but never thought of carrying two in my purse. More blood tests, meaning more co-pay. Sigh. At least I got the free samples!!! I was glad to get reestablished with someone who is used to treating chronic hives. The only allergist I found locally after my immunologist passed away last fall said he didn't treat chronic hives.

I left at 4:30 this morning in order to get to KC in time for my first appointment. I drove through dreadful rain and lightening half the way there, and then bumper to bumper traffic after I hit the Kansas City limits. I had forgotten what real rush hour traffic is like! The Headache did not behave itself, even after I fiddled with my stimulator controls.

Tonight I will be trying the Vistaril to see how it goes, but am waiting until the last minute because I am determined to get some things done. I won't be able to save myself from hurting, since the march to painville has already started and is well on its way, so I'm going to suck it up and see how long I can last. I was able to work for about an hour after I got home, so at least I am drawing some wages for today. Hoorah!

Bad Headache #24 2009

Broken Head

Most of the day is gone and my head is achey still. I have managed not to go to the ER today (which makes me a $150 copay richer!) but am wondering now if I should have. Bad day - wonder if it's related to the weather? A storm blew in last night about 2 AM, and the cold wind has been blowing all day. A misty rain was falling and it almost felt like sleet. Very unseasonal for this part of the country.

I am proud that I managed to stop The Headache at the "Oh God" stage this morning, but the same measures are not helping this evening. The Belly is not cooperating either and refuses to keep food down. I now have a railroad spike of pain running from the back of my head into my left eye, with another spiking in from my left temple. I think my head is just broken. And all the kings horses and all the kings men couldn't put it together again!

It's cold enough today that I have not seen the usual parade of our Amish neighbors going to meeting. Perhaps they ran by in their buggies while I was zonked with medication. They are nice quiet neighbors, but I fear for their safety on our road - sometimes I hear their horses and buggies going by in the wee hours of the morning, and even with lanterns their buggies just aren't that visible.

I think The Headache is going back to the same pattern it had last fall. I believe the Solu-Medrol the ER gave me back in March has worn off and The Headache is up to its old tricks. I hope that the study coordinator in Cleveland finds out that I don't have to go on April 15th. That is a lot of energy for me to use just to hand over a palm pilot. I could just Fed Ex it if they need it physically back.

I spoke with a friend of mine today and it helped me put The Headache in perspective. She has conjestive heart failure and takes insulin six times a day for diabetes and about 30 medications. At least The Headache is not life threatening, just life limiting.

The headache diary continues to be difficult to transmit. Some nights it takes 3 to 4 tries. I am thinking of making a little sound chamber out of a shoe box to hold the telephone handset and the palm pilot, since it could be ambient sound effecting the transmittal - no way to tell. Maybe I will make it tonight as a distraction.

I had cancelled my appointment in Kansas City at KU Med Center with my headache specialist in April since I didn't think I had enough energy to go to KC and go to Cleveland in one month. The rescheduled date is in July and they were sweet enough to mail me a few more months subscription for the indomethacin! Hoping to have an implant by then, but as slow as its going now I have my doubts. I am just not a lucky person.