Posted by Flo on March 13, 1999 at 01:21:50:
May of you know that we took Rich to the Michigan Head-Pain Neurological Institute. Our neurologist said it is the premier place in the world to go, so we just took off and went to Michigan and froze to death--just kidding. The snow was beautiful, but so cold and messy. We are so glad to be home! Thank you all for your prayers.
Rich did get some relief. His headache went from a severe, constant headache to a moderate, constant headache. While this doesn't sound great, it is a huge help. In addition--and extremely important--he got a med to help him sleep, so at least he can have a little relief. He is also taking Neurontin, which may build up and help some more. The MHNI also offers many classes and personal pain management with a psychologist to help the patient cope. I believe Rich has learned a lot. One thing I learned is not to ask him all the time how his head is. He is supposed to tell me without my asking. Very important is that the doctors there will now work with our neurologist for follow-up. We were jealous of the people who live only a few hours away because it would be really nice to go back there monthly. However, we are spoiled in Florida, I didn't know how spoiled!
We wish, of course, that the pain was mild or nonexistant. We are still hoping. One thing we learned was that his headache-diagnosed as a migraine variant is one of the hardest headaches to conquor, along with closed head trauma (like car accidents). Dr. Saper, who heads the Institute (he was in Rich's room 4 mornings a week personally) said that regular migraines and clusters are easy to work on compared to what Rich has. He said clusters are a HORRIBLE headache, but they are predictable much of the time and respond to the same medications. (He said they are able to help about 90% of cluster sufferers.) Whereas the migraine variant patients all respond to something different. It is just trial and error. (Incidentally, after reading some of the messages on this board tonight, I am wondering of some of you might have clusters and migraine variant headaches also.
When Rich first arrived at MHNI he received a sheet listing all the medications ever used for headaches and was asked to check the ones he had taken and whether they worked or not. Then they started the protocol. He was given 3 or 4 meds at the same time--compatible ones. He felt pretty drugged up at first and wasn't too happy about that. He later found out that he was lucky he didn't have to spend time detoxing, because most of the patients are hooked on narcotics. Many then get a rebound headache, so at least he could just go ahead and get started. After a week and a half, we were all getting pretty desperate because nothing had worked at all. Finally he found something that took the headache down a little. They kept trying more things but no more change. When the doctor offered to start through the protocol again, he didn't want to. He just wanted to get a sleep med and come home. Now we are just waiting to see what happens. Don't know if he will feel like working. I'm not asking, just waiting to see what he does.
I would urge all of you to contact the MHNI. They couldn't be nicer. They treat each patient as an individual. We were able to get an appointment quickly. From the day our neuro called them about us to the day we had the appointment was 15 days--that's amazing. All of the nurses there are headache patients themselves so they are sympathetic. The hospital Rich was in is one of the 100 best in the US. He could wear his own clothes and walk around the grounds, eat in cafeteria, in other words they treat you like an intelligent person--give you a say in your treatment.
Dr. Saper is very intelligent and really understands all these headaches. Just make sure you have good insurance. We have taken a huge financial hit on this one because our ins only pays half and Rich was in the hospital l9 days.
I will be glad to answer any questions. Just e-mail me or put the question on the board if you think others would be interested. I'm not reading as often now but will try.
Thanks again for all you love and prayers. Love and HUGS to all of you!