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Topic: What have I stumbled upon? (Read 1022 times) |
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Marine1
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What have I stumbled upon?
« on: Jun 2nd, 2007, 7:56am » |
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Hey everyone,
New guy on deck. Was doing some more research on Cluster Headaches last night when I find this place. Been reading post after post.
I would not have ever though there were this many people with CHs much less a site dedicated to them. Im glad there is.
Little background info...
Im 31 (32 in Aug), live in SC and am in the US Marines.
I started having these bad boys back in Oct 2005 at MCAS Cherry Point.
They usually start in the cheek area then mozy on up to the eye and forhead on the left side. Starting at 1:00pm and about every 3 hours after that till 4am when the last one comes.
Now if anyone here has had dealing with military doctors, you know they are overworked and rarely take the time to really help you and figure anything out. Ususally the first line of defense for anything from a headache to a broken leg is Motrin, if that dont work then you go see them
again.
I dealt with this Dr. for over 6 months and I was in a world of hurt, I didnt know what was wrong with me and neither did he, luckly I got transfered to MCAS Beaufort.
The Doc here, although moving alot slower than I would like is great. Sent me to get a C/T scan immediatly. All was good. Since the pain was starting in the cheek area and during attacks I was having a runny nose, eye tearing he sent me to an ENT to check sinuses. Antibiotics and another C/T and nothing.
Next step........Neuro! Now I had been doing some research on the net about headaches and ear infections and sinuses and TMJ to try and narrow this down. CH is what it boiled down to and I did not, PRAYED to not be in that boat and hoped I was wrong.
After filling out the Dr's. paper work, within 10min of sitting down with him and talking to him, he asks if ive ever heard of Cluster Headaches? I still remember getting a hot flash and wasnt sure wether to laugh or cry really.
Reading that there are 2 types of CH, episodic and chronic and the fact that ive been going since Oct 2005 without a break or slowdown, I knew it was chronic and the time I would serve in he// was unknown.
Its been 3 weeks since ive seen him. He put me on Depakote and gave me Imitrex. Box of 9 pills, 8 injects and 6 nasal prays. Doc? What happens when this runs out?
Im getting 4-5 a day. Thats the most he can give me in a month he says and the Depakote should have a signifigant impact by then. Again, its been 3 weeks and the pain has slightly subsided but not the frequency.
So thats my story thus far.
Ive been reading that Lithium is better suited for chronic and Depakote for eposodic. Does any have any experiance with any medication taken daily to fend of the enemy?
Its great to meet all of you and talk with someone whos in the know and understands.
Semper Fi,
Marine1
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| « Last Edit: Jun 2nd, 2007, 7:59am by Marine1 » |
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Bob_Johnson
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Re: What have I stumbled upon?
« Reply #1 on: Jun 2nd, 2007, 9:52am » |
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Print this article and use it to talk with your doc about options.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Explore the OUCH button, left, and read the many articles they have posted. Would also suggest the second book, below:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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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Guiseppi
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Re: What have I stumbled upon?
« Reply #2 on: Jun 2nd, 2007, 10:42am » |
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Welcome to the board, so sorry you have to be here, these things suck!!! I'm a 47 year old male episodic. My regimen.
When my cycle starts up, usually 2x a year around the time change with cycles that run 8-12 weeks, I go on a 2 week prednisone taper, going from 80mg a day down to zero. I start taking lithium building up over a 1 week period to about 1200mg a day. The lithium is my preventative, the prednisone gives me a break while I wait for the lithium to build up in my system. For comparison purposes, I weigh about 190 pounds and the 1200 mg keeps me at an effective therapeudic level.
The lithium blocks about 80-90% of my headaches depending on how strict I am about my triggers....for me they are alcohol, sleep disruptions, getting really hungry or extended periods of stress.
For the break thrus I use oxygen......demand oxygen you'll read a lot about it on the board, after 30 years of these things it's still my first line abortive. I occasionally use imitrex injectables when all else fails.
Stick around start reading like crazy and accept the fact you will shortly know far more then your neuro about CH. AND GET HIM TO PRESCRIBE OXYGEN!!!!! Hope you get some pain free time soon.
Guiseppi
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MR_FLOOR
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Re: What have I stumbled upon.
« Reply #3 on: Jun 3rd, 2007, 1:38pm » |
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Whats up Marine1 first off god bless all of the military.Good you found this place there is much you can learn read read read.This site will teach you more then most doctors offices.Like Guiseppi said try O2 you will find that it works for most(not me)on this site.A good luck to you my friend and stay pain free as possible.Also try the Imetrex tips on the left hand side of this page,it works. 
Dave
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Tara Ann
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Re: What have I stumbled upon?
« Reply #4 on: Jun 4th, 2007, 7:48am » |
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Welcome, but sorry you have a painful oh so painful reason to be here. Great advice from these guys that have been there done that for a long while.
I've had these for about 9 yrs. I'm very med resistant. I'm chronic and I've tried just about everything but I think I have found what works for me. Topamax seems to be my magic pill. I hope you have yours! Good luck and try the o2 cause if that works then that will be awesome!!!
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Marine1
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Re: What have I stumbled upon?
« Reply #5 on: Jun 5th, 2007, 6:07am » |
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Thanks for the advice everyone.
Ive had these for just over a 1 1/2 years and for the love of god I dont know how some of you have managed to get through 5, 9, 15, 30 years of this.
Im pretty med resistant also, so im going to look more into topamax if it seems to be working for you.
O2 sounds like its the cats meow and works for most so ill have to ask about that to. Just let them be gone already.
Semper Fi,
Marine1
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ClusterChuck
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Re: What have I stumbled upon?
« Reply #6 on: Jun 5th, 2007, 11:24am » |
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on Jun 5th, 2007, 6:07am, Marine1 wrote:| Ive had these for just over a 1 1/2 years and for the love of god I dont know how some of you have managed to get through 5, 9, 15, 30 years of this. |
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We get thru it the same way you will. With a kick ass, don't let the beast win, attitude!
Remember what I always say, the three most important tools in winning are:
ATTITUDE ATTITUDE and ATTITUDE!!!
You CAN live with this, if you refuse to let the beast win!
Good luck!
Chuck
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Bob_Johnson
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Re: What have I stumbled upon?
« Reply #7 on: Jun 5th, 2007, 11:51am » |
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While many folks here love oxygen, I can't imagine how you could lug around even a small tank of O2 when you are on duty.
Given the kind of unpredictable work situations, which I assume defines your life, a fast acting abortive which you can use easily and carry would be in order. In the link which is in my first reply, look for two items which fit this bill: Imitrex injection or Zyprexa (olanzapine), a pill. The pill has a distinct advantage, if a trial shows that it works for you. This is the sort of issue which needs to be discussed with your doc and it's why I suggested this particular article.
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| « Last Edit: Jun 5th, 2007, 11:52am by Bob_Johnson » |
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Marine1
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Re: What have I stumbled upon?
« Reply #8 on: Jun 9th, 2007, 7:59am » |
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@Chuck - I usually have have a great attitude. Then I feel one of these suckers comming on and man, I just get so freaking p.o. just waiting. When it does come, my family knows to let me be but I know it still affects them and that really bothers me. Im almost afraid to go anywhere because I know im going to have to deal with this thing at one point while on a family outting. In the mall or a resturant or any public place isnt the most opportune time to have one.
@Bob - With the O2, it would have to be a home only thing. There is no way id be able to lug around anything like that without someone questioning if im fit for duty or medical status. I had the injections 8 of them and used them for work if one popped up.
I will be heading back to Al Asad, Iraq at the end of this year and really need a preventitive or im gonna be in a world of hurt.
Semper Fi,
Marine1
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| « Last Edit: Jun 9th, 2007, 8:00am by Marine1 » |
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Kevin_M
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Re: What have I stumbled upon?
« Reply #9 on: Jun 9th, 2007, 8:37am » |
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on Jun 2nd, 2007, 7:56am, Marine1 wrote:| Its been 3 weeks since ive seen him. He put me on Depakote and gave me Imitrex. Box of 9 pills, 8 injects and 6 nasal prays. Doc? What happens when this runs out? |
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Getting enough prescription abortives is impractically difficult, that's why oxygen suffices well for many hits, which I use at home but on the job carry trex.
The most useful thing is prevention. A preventative. I have to mention verapamil, which is in Bob's link too. An effective level of that is worth more than its weight in gold for all the hits that won't happen. Work on a prevent, many times the first one you try may not be it.
Just think if you could stop the hits, not have them. That is motivation enough to work on a preventative that works.
Welcome and hi Marine1
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michael
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Re: What have I stumbled upon?
« Reply #10 on: Jun 9th, 2007, 1:04pm » |
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Just wanted to say respect to the American military from an Englishman
Mike
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TonyG1
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Re: What have I stumbled upon?
« Reply #11 on: Jun 9th, 2007, 10:10pm » |
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Hi Marine -- Former air force medic here ... sounds like they finally got you on the right track. Generally, as I recall it was vitamin "M"otrin that cured most anything  <just kidding... sort of...> 
Seriously, Verapamil might be worth checking into as a preventative. It works well for a number of us clusterheads !
Take care,
Tony
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| « Last Edit: Jun 9th, 2007, 10:11pm by Tony3901 » |
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Wayne
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Re: What have I stumbled upon?
« Reply #12 on: Jun 10th, 2007, 1:46pm » |
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Hi Marine1
Another very popular preventative is Topomax which is essentially drug to control epilepsy but is also very effective with controlling CH. The only problem with it is that it makes many people, me included, very fuzzy headed which I don't think would be a great thing in your line of work. So, if your Doc mentions it as an option I would seriously recomend that you try it only as a last resort, Verapamil has been quite effective for me without taking away my ability to think.
Cheers
Wayne
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Charlie
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Re: What have I stumbled upon?
« Reply #13 on: Jun 10th, 2007, 7:53pm » |
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Hi Marine. We're glad to have you but sorry that it has to be because of this horror. You'll find a lot of good ideas here. I hope you'll try this one. It worked well for me.
Dr. Wright’s Circulatory Technique:
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.
Charlie
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Rosybabe
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Re: What have I stumbled upon?
« Reply #14 on: Jun 20th, 2007, 2:05pm » |
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Welcome Marine1!!
Hope you find a preventative that works for you, keeo trying, it is hard to find the right one but it is out there  , verapamil, inderal, topamax, etc...
Tale as many abortives as you can with you when you go on duty even if you have to take them in pills form, those are better than having nothing.
Try with very very strong coffee or red bull. Strong coffee should not be a problem to find in Irak, they make one of the best .
Good Luck and wishing you PFDN very soon!!
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Marine1
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Re: What have I stumbled upon?
« Reply #15 on: Jun 28th, 2007, 4:28pm » |
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on Jun 9th, 2007, 1:04pm, michael wrote:Just wanted to say respect to the American military from an Englishman
Mike |
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Thank you Mike, much appreciated!
@Tony - Hey brother! Ya good ole motrin
And thanks to everyone else for the input and recommendations and advice.
I JUST walked in from the Nero Dr. and he's keeping me on Depakote but gave me Verapamil also.
Its only 180mg a day and reading the forums I thought I saw people in the 700mg + range.
He said breaking 300mg would start to cause serious consipation so he kept it at 180mg for now. Im curious though how the people taking upwards of 700mg are doing with that much? Anyone?
I asked him about Topomax also, he said he wanted to hold off on it cause Depakote was stronger and Topomax was used more for Migranes than CH.
I guess after 30 days of being on Verapamil and Depakote if there is no changes I can get a little more forceful  about Topomax.
So that covers it. Again, thanks for all the input and advice from everyone.
Semper Fi!
Marine1
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Kris_in_SJ
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Re: What have I stumbled upon?
« Reply #16 on: Jun 28th, 2007, 8:14pm » |
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Hi Marine1,
Welcome to the family.
With regard to Verapamil - I've known very few clusterheads who get relief with less than 480mg/day. Yes - it causes constipation. We all know what to do about that ... bran, water, water, water, Metamucil, fruits & vegies, and laxatives when desperate. The article first mentioned by Bob is pretty comprehensive with regard to preventatives and dosage. I'd recommend printing out and taking to your neuro at next appointment.
Sorry you had to find us, but glad you did. Get the best of treatment you can while still here in the States, and keep us informed. We tend to worry.
Hugs,
Kris
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Callico
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Re: What have I stumbled upon?
« Reply #17 on: Jun 29th, 2007, 5:47pm » |
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Sempre Fi!
Welcome aboard, and thanks for your service.
I used Verap for some time and then added Lithium to it. The combo did a pretty good job for a while, but I had probs with soem of the side effects. Recently I found a post on Kudzu on here, and it has worked wonders. Had my first hit in 2 1/2 wks this afternoon, and I have been chronic for 3 1/2 yrs after 21 yrs episodic. Red Bull works very well for me as an abortive when I can't use o2, and is not that hard to keep available. It has to be chugged down as fast as you can chug it for it to work, don't ask why. another energy drink will work as well as long as it has Taurene in it.
Keep your head down over in the sand box, and thanks so myuch for the great job you guys are dong over there.
Jerry
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Patrick_A
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Re: What have I stumbled upon?
« Reply #18 on: Jul 6th, 2007, 9:57pm » |
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Hey marine,
I am also from SC. I live in Greenville. I am episodic and my Neuro prescibed 980mgs of verapamil and 80 mgs of Prednisone that I slowly tapered off of. I been painfree ever since. That was 4 years ago. I might have just got lucky. My Dr. though is a great CH Dr who has great compassion for us sufferers.
He is part of a group called Greenville Neurologist, His name is Dr Zimmerman.
Patrick_A
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cash5542
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Re: What have I stumbled upon?
« Reply #19 on: Jul 7th, 2007, 3:16pm » |
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Hi! I'm not a sufferer, but a supporter of a 22 year old just steps ahead of you. She has been dealing with this for a year (chronic  ) and is trying some of the same drugs. I have read and asked tons of questions and have come to the conclusion that everyone is different. She started, last July, with depekote, 1000 mg a day and was pain free but a zombie as well as put weight on quickly. In Oct. she began using topomax, nick name is dopeymax. I was afraid because she was a senior in college and I had heard awful things about memory loss. She did and has continued doing great without side effects. She feels it was because she increased REAL slow. She is on 200mg. Also she does the bulk at night , (50am, 150pm)She graduated on time although she was in the hospital twice for CH. She has also been on verapamil with the Topomax. She is going to a Headache specialist in Philadelphia and they have upped her 480 dose to over 1200. She has been adding 80mg a week and is now at 880. So much for my "let's stop at 500" attitude. She has weekly EKG's and eats LOTS of fresh veggies and fruits. The constipation stopped after awhile, laxatives helped too. One thing that hasn't been mentioned is preventatives (Triptans) can't be used back to back. I have heard no more than twice a day to 4 times a day. Also can't combine one like imitrex with relpax. O2 has been her best preventitive. She has a scipt for small tanks too which work in the Mall, theaters, ect. I also didnt mention all of the drugs she tried and didnt work. Just keep trying.
I'm a military brat, moved all over the country and the world. I still have nightmare memories of these hospitals. The only way I got in fast was for my Dad, in uniform, to bring me. I lived on penicillan for tonsilittis rather than taking them out. After about 8 years of begging they did. They are so overworked! Good luck! I laugh at people who complain about waiting for an hour to see the doctor. That was fast service at Ft Belvoir. Good luck on your next tour to Iraq. My prayers are with you and your family. It's so hard on everyone!
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Jonny
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Re: What have I stumbled upon?
« Reply #20 on: Jul 7th, 2007, 3:35pm » |
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on Jun 9th, 2007, 7:59am, Marine1 wrote:
I will be heading back to Al Asad, Iraq at the end of this year and really need a preventitive or im gonna be in a world of hurt.
Semper Fi,
Marine1 |
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I was chronic for more than 31 years, around year 23 I was diagnosed and put on 600mgs of Lithium carbonate and 480mgs of Verapamil a day. It not only blocked 85-90% of the headaches from breaking through, I had no side effects from these meds.
My neuro calls it the chronics cocktail and by God it did its job!
Meds work for some people and not others, but if I was you I would ask to try this!
Good luck and thank you for your service to our country (that cant be said enough!)
............................................Jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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sldrswyfe
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Re: What have I stumbled upon?
« Reply #21 on: Jul 10th, 2007, 10:58am » |
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Hey Marine,
So glad you found the site...it will save years of aggravation. Sorry for the reason you found it.
I am chronic too...and understand the raised eyebrows when you carry a tank around. Is there some way to strategically "hide" it somewhere you can retreat to when possible...and carry it in incognito? It will give you peace of mind and lower your anxiety considerably knowing you have "relief" on site.
Im glad you found this site...and thankyou for all your dolng. Thoughtfully, Sherri
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Marine1
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Re: What have I stumbled upon?
« Reply #22 on: Jul 17th, 2007, 3:50pm » |
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Hey Everyone!
Just wanted to give a sitrep and check in with this great group of people.
I am extreamly greatful and appreatiative of everyones input, suggestions and support!
So as it stand now, im on Verapimil 180mg and Depakote 500mg. With those 2 things and the Red Bull, I havent had to use a single Imitrex shot, nasal or pill.
As soon a I feel the slightest twinge or shadow..........GULP the Redbull. After 3-5 min the shadow wears off and all is good.
The down side is Redbull is $1.16ea here on base and chugging 4-8 a day makes you think. But.........This is absolutely one of those times that cost outweight the conciquences. Much better than the 30-45 min down time in sheer agony 4-5 times a day.
So for now, I will save my 6 shots, 6 nasal and 9 pills with a refill the 19th of this month (July) for when S**T really hits the fan. Im going to pack rat this stuff.
Hopefully I found a suitable course of action, but everytime I twinge or shadow, I still get butterflies in my stomach worring about what could happen if the Redbull fails to work. Is it going to stop, or go full blow? Tell ya, not much scares me, but I get almost to the point of sweating thinking about the beast comming to my house for an extended stay.
It is deffinetally not a long term course of action IMHO but its a slight break ateast after almost 2 years straight of this crap.
Semper Fi!
Marine1
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Rosybabe
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Re: What have I stumbled upon?
« Reply #23 on: Jul 17th, 2007, 4:21pm » |
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Hi Marine1!
you can always try the generic forms of red bull, as long as they have taurine and caffeine at the same level you are good to go.
Hope you have this cycle over very soon!!
Rosy.
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Believing is just the beginning!
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Asa
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Posts: 12
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Re: What have I stumbled upon?
« Reply #24 on: Jul 27th, 2007, 10:47pm » |
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Hey Marine, a retired Zoomie here. I am soooo glad I started getting my CHs the last few years of service and never had to deal with the military docs (no offense to the medic who posted earlier..God love you guys). But, I have absolutely no doubt I would've been given the Magic 6 Pill (600mg Motrin) and told to get to work.
Hang in there pal! Twenty and a WU are just around the corner!
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| « Last Edit: Jul 27th, 2007, 10:47pm by Asa » |
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