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carolynp
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Introduction
« on: Jul 14th, 2004, 12:28am » |
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Hi everybody. I have been lurking for over a month. Reading so many threads at the very least I am glad that we are not alone.
My husband Jim is the clusterhead in our family. Had the first ones a little over 6 years ago. He had 5 or 6 in a 3 week period then. The doc diagnosed them as migraines and wrote a script for Imitrex injections. That worked so we were thankful.
Then on March 20th of this year, they started again. It has been an almost daily occurance since. I think he has had about a dozen good nights of sleep since then. The rest are fitful at best. The headaches used to come only in the evening. Usually around 6 or 7 pm. The first 3 put us in the ER. Every single time for more than 4 hours and I swear to this day that they didn't believe him after the 2nd night. But after trying everything else they could think of, they would give him a Demerol injection and off he would go to sleep and the headache would end.
I started looking after night one for information on the net. Found a clinical site with info on clusters. I was convinced that that was what he had. Asked the ER doc. Asked our internist. They both told me that that couldn't be it. And I should quit reading medical journals that I obviously didn't understand.
Headache #4 happened about 4:30 pm one day. So I took him to the internist's office so they could SEE what we were dealing with. Our doc was of course out for the day but Jim saw an angel disguised as a PA. She listened to us. Watched Jim for a while, and then said, "looks like cluster headaches to me. Have you been to the Headache clinic yet?" Heck, we didn't even know there was such a thing. So they scheduled us an appointment. But we couldn't get in until May 5th. 5 weeks away. I broke down in tears. This beautiful angel gave him a steroid shot and sent us off with an Imitrex script and a steroid taper script. That worked for a couple of days. Which was better than what he had been having.
At his follow up appt 3 days later. The internist had a fit that he had been prescribed Imitrex and the steroids. Sent him home with a script for Verapamil. And told Jim to quit taking the other stuff. Uh, no. That stuff is working. And that was then end of that internist.
The "specialist" gave him a cluster diagnosis. Although I would wish it had gone differently, he actually had a cluster on the way to the doc. So by the time we got there he was at about a 10 on the pain scale. Worked out well. Funny thing was that no one in the office except the doc had ever actually seen a cluster in progress. you would have thought that he had his arm severed the way those people acted. But I don't blame them. I think I did the same thing at first. But that seems so long ago.
So now he is on Verapamil, Lithium, and Imitrex injections. Steroid shots every 30 days, and a steroid taper pack twice since the beginning of May. Today they added something to help him sleep. Hopefully that will help.
Gee I got long winded. Sorry. But on the real introduction side, My name is Carolyn. My husband's is Jim. We have 4 beautiful children. The oldest is 21, youngest 15. And all but the youngest no longer live at home.
Jim is a Mechanic. I am an accountant for the housing authority. We are founders of a non-profit dealing with missing children. It was started, unfortunately, in response to our own daughter's disappearance in June 2001. The website link is in my signature. We live in Council Bluffs, IA. just across the river from Omaha, NE. email me if you are in the area! I know that we would benefit from meeting you!
Have a blessed day!
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Love, light, and pain free days and nights, Carolyn
www.helpfindachild.com
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Ronny
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Re: Introduction
« Reply #1 on: Jul 14th, 2004, 2:30pm » |
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Hey, i'm Ronny
Sorry to hear about your husband, i hope he finds some relief soon. I'm a mechanic too also with CH so i feel a bit related. 
Keep smiling... 
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Superpain
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Re: Introduction
« Reply #2 on: Jul 14th, 2004, 3:09pm » |
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Welcome.
Sorry to hear about your husband... And REALLY sorry to hear about your daughter. 
Prednisone is great, but too much can be very bad for him.
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Chris
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Ronny
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Re: Introduction
« Reply #3 on: Jul 14th, 2004, 3:50pm » |
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Oops, I'm so sorry to hear about your daughter, in my first reply i read 'Jim is a mechanic' and i jumped to the reply button. 
I have 5 kids myself, this would be my worst nightmare.
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Bob_Johnson
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Re: Introduction
« Reply #4 on: Jul 14th, 2004, 4:59pm » |
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If you continue to find your headache doc a good one, put his name on the list of recommended docs. OUCH site, on left, then under "cluster help". Folks are always trying to find someone who is helpful.
Might consider getting either the second or third titles to get a good overview.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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buckeyescooter
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Screw Fear!
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Re: Introduction
« Reply #5 on: Jul 14th, 2004, 7:42pm » |
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Welcome to a great place. I'm glad your husband finally got the correct diagnosis. Hearing about that internist made me want to crack him in the jaw. Your daughters disappearance is.......well, there are no words.
I noticed you didn't mention Oxygen as an option...MANY cluster sufferer's get great relief from breathing pure o2 at the onset of an attack. Ask your Dr. and be sure to read the info in the left hand column. Two very important things regarding o2:
1. Get a non-rebreather mask
2. Must be a very high flow rate. Anything under 10 lpm is usually useless.
Hope this helps.
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Clusterheads are a rare breed.
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Charlie
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Re: Introduction
« Reply #6 on: Jul 14th, 2004, 8:09pm » |
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Welcome aboard and if you stick around, you'll find some good ideas and ways to deal with this horror. From what you say, you definitely deserve a break.
Here is something that worked for me:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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Kris_in_SJ
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Re: Introduction
« Reply #7 on: Jul 14th, 2004, 8:57pm » |
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Welcome - Sorry you have to be here, but glad you found us.
And, so sorry about your little one - it's every parent's worst nightmare.
Sounds like your husband is on a good "cocktail," though I thought Lithium was usually reserved for those who've become chronic (I could be wrong about this, though). I'm an episodic also. I just finished my 3rd cycle. There were 5 years between the first 2, and 4 years between the last one and the most recent. I usually respond well to fast ramping up of Verapamil. My doc sure manages to keep the pharmacy insurance people confused, anyway. I also respond well to Imitrex injects, but am a believer (like many here) in O2 therapy, so I encourage you to read as much as you can about it.
Hope your husbands HA's continue to improve. Keep in touch - you'll find much support here.
Sending hugs and good wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Introduction
« Reply #8 on: Jul 18th, 2004, 9:42pm » |
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Welcome to the boards Carolyn. Sorry to hear that Jim is 'one of us'. As a father myself, i'm really sorry to hear about your child. It scares me to even think about it.
About the people at this site:
We are all here to listen, offer advice, and to help in anyway we can. There really is a great bunch of people here and we understand the pain that Jim goes through.
Keep us posted on his progress and treatments.
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I'm STILL alive ?
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