Hi Everyone! I am new to cluster headaches. I have been diagnosed with Psuedotumor Cerebri, chronic persistent daily headaches and migraines. I have been going to the *best* headache center in Dk according to the doctors in my new family and the neuro diagnosed cluster headaches too. OH JOY!!! I would really rather have my wisdom teeth pulled again without painkillers that this. I am currently in a 60 day period of no abortive type medications except O2 for the demon pain and valium so I dont jump off the roof or in front of a train. I now know what pain is and I am so very grateful I found this site. I cant take Calan because it affects my breathing and I am at my wits end today. I have lost count of how many of these ugly buggers I have been getting for the past 2 weeks but I am sure I have run out of fingers and toes.
I am trying to go to school and the pain interferes with my education even though I am going to school anyway. I am 39, no kids and am currently wondering when I should go to the ER for this pain. I am in the OMG why me stage and the next one is the can I jump off the roof now please. What is a good coping method? I have tried meditation but the demon is so mean that what works for coping with the migraines doesnt work with this one. Any advice would be greatly appriciated. Sophia :o

Since the doc has put you on the 60-days, no meds, period, I doubt that the ER staff could give you anything more effective than the oxygen.

While waiting for the doc's next step, start learning. The buttons (left) will take you to many links with good material, especially the OUCH site.

Here are two links for the most current therapies:

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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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. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)
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Two excellent books:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 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.

hi sofia,and greetings from Long Island, NY..... and so sorry 2 hear u r battling the beast :'(...............like bob said, read, read, and read again.......................in a short while more of the "experts" will be by to help u.........(i still consider myself a Newbie since Jan)...............have you tried an energy drink, such as Red Bull/Rock Star? slugging one of those @ the onset will knock it down ..........................i will be thinking of u and hoping u get some releif reall soon
deb [smiley=hug.gif]

Hi Sophia and welcome to your new home. You are not alone anymore with your pain. Good to hear you are using o2 as an abort but you did not mention anything about a preventative med. I take Verapamil as many here also take as a prevent but talk to your Doc about what might work for you.

Read all the info to your left and hope you find something that helps you deal with this beast.

This family is the best and now we are one more stronger in fighting this monster.

  Barry :)

hang in there, your with family now!! it's very tough to deal with clusters, not only the pain but the emotions are serious enough to drive us all mad.One thing i try to do is keep myself active, if im moving around or working im able to keep it at bay for the most part, so keep busy!! one good thing to know is it wont kill you, you might think so at times but it wont!! No more roof talk GOT IT!!  I hope you feel better soon. Coach Bill

Welcome Sophia, horrible  to know you are in such great pain, but consider this the best place to be when you are. I only recently found it as well, but happy I did, given the circumstances.
Here you can ask anything and the folks will have answers and advice immediately, and read all you can to educate yourself.

Kom tilbage snart igen, du er gennem venner!

Hi Everyone and thanks for the wonderful suggestions and support. I have a pact with my family that I will not jump off the roof or in front of a train without consulting them first. I have tried Calan for the pain and my feet got so swollen I couldnt put on shoes. I will try it one more time before I give up on that one. I hit my O2 about 5 times a day and wish I could lug that heavy thing to school. I am going to ask my doc for a portable one. Even if I have to carry it in a wheelbarrow I dont want to be without it. I am trying to find energy drinks here and am not having much luck because my danish is absolutely horrible still and my boyfriend is so in the dark sometimes. I will ask at the kiosk down the street from where I go to danish lessons. In the meantime I am slamming iced coffee (YUM!!!) and trying to meditate. When the pain gets really bad does anyone else here get sick and throw up from it? At least I can still drink water. But food is rather questionable at the moment. I also get crazy and have been known to pick fights when I am really hurting. I suppose it feels better to have something else to scream about. I have yet to slug anyone but I have hit my head agains the bathroom floor. I still wish I hadnt done that. The bruises hurt too. Darnit! I have about 25 days to go with no pain meds but have permission to take phenegran for this. With 2 of those and a benadryl I can calm down enough to meditate. If anyone had ever told me that I would ever have pain worse than migraine I would have said there was no such thing. Boy am I wrong and the Demon for a nickname is very accurate. Thanks again for all your help and I will keep checking in. Hugs to all of you and hoping the Demon goes and hides for everyone today. Sophia

Sophie, hang in there. All of us here know what you are going through. Keep searching for the energy drinks, as Red Bull works well for some here. I was taking Verapamil during my last cycle so I was advised not to take an energy dring while taking that med.

As for the smaller, portable tank of o2 I have one in my car at all times and one at work. The smaller "E" tanks are about 2 feet tall and easy to move around. I keep my larger tank at home, so I have o2 within my sight at all times.

Here are some PF wishes for you and hope you catch a break soon. Please keep us informed on how you are doing.

 Barry :)

AWWWW you guys are the best!!!!! Hugs from Denmark. Sophia

maalstroom wrote on Jun 8^th, 2008 at 3:19am:

Welcome Sophia, horrible  to know you are in such great pain, but consider this the best place to be when you are. I only recently found it as well, but happy I did, given the circumstances. Here you can ask anything and the folks will have answers and advice immediately, and read all you can to educate yourself. Kom tilbage snart igen, du er gennem venner!

Hey Sophia, when I wrote that, I didn't realize you weren't a native Dane. Anyway what I said was: Come back soon again, you are amongst friends.
But I see you already know that!
Greetings from the Netherlands to beautiful Denmark!  ;)

Thanks for the translation. My danish is still in the beginner stage. I have my first big exam on Tuesday and I am praying for a pain free morning that day. I am up  to Jeg hedder Sophia and Jeg kommer fra USA. And I still struggle with the vowels in your alphabet. For non danish people that is My name is Sophia and I come from the USA. Hugs and hoping everyone has a pain free day. How wonderful would that be? Sophia

Alright now, enough with the danish yall! It makes me suspicious!LOL! Anyway, welcome Sophia. I think everyone here has thought about the roof at least 100 times, but Im thinking this site might be a life saver. Hey Barry- what size O2 bottle do you have at home? Did it come off a cuttin torch? I didnt know they offered anything bigger than the 2 foot bottles.

Sophia hugs. now that's familiar.

        Potter

Hi Sophie, sure glad you found this site.  It's awful that you had to though.  I'm kind of a newbie and I know you'll get lots of advice from the site veterans - but you asked about how others cope.

It's not easy but I try to keep thinking things like "at least I can have these headaches and not require a wheelchair", or "at least I have the arms and hands to bang on my head".  You know, the "it could be worse" logic.  I even manage a smile when I think of the "Simpson's Movie" when Bart say's something like "I had the WORST day of my life", and Homer (his dad) says, "So far."

Keep in mind also that the pain does go away.  I've never had one last longer than an hour (Thank God and Knock On Wood).  That knowledge alone helps get me through.

That's about it (along with the rocking, pacing and other distracting actions).  I'm as curious as you are as to people's coping mechanisms.

Wishing you all the best and many PF days.....Brett

P.S. I hope I didn't offend anyone physically challenged as I described above.  I'm sorry if I did.

Ted L. wrote on Jun 15^th, 2008 at 3:15pm:

Alright now, enough with the danish yall! It makes me suspicious!LOL! Anyway, welcome Sophia. I think everyone here has thought about the roof at least 100 times, but Im thinking this site might be a life saver. Hey Barry- what size O2 bottle do you have at home? Did it come off a cuttin torch? I didnt know they offered anything bigger than the 2 foot bottles.

I'm suspicious too.

Potter

Hi Sophia,

I'm new to this board as well, however, I've been dealing with these headaches for close to 10 years.  I understand the pain your going through.  I have been on my hands and knees dragging my head across the floor, bangging my head, etc.  When the headaches are at their worst, it seems as though your going to die just from the pain alone.  I have never vomited from one, but during some of the worst episodes I have felt slight nausea.  Meditation is good, it has worked for me at times.  Imagination is a good thing.  I have pictured a hole in my head and as I slowly exhale, picture the pain and pressure exiting through the hole.  I have even imagined the pain as a string of sorts, that I slowly pulled out of my head.  I have had some success with these techniques but usually before the headache reaches its climax.  I have also had some success with various forms of upper body stretching.  Try moving your head, back and arms in all sorts of varying positions.  Lie on the floor or bed and put your head, back and arms in all sorts of positions.  You are likely to find a position where the pain suddenly lessons.  Most important thing is not to hurt yourself but you want to create some tension.  If I do this in the early stages of a CH I can many times stop them from reaching "eye popping" magnitude.  We all have various pressure points in our head, neck and back.  Bending in just the right position has given me almost immediate relief at times.  Good luck and hang in there.

Hi Sophie,

and welcome!! Can't imagine anything worse than suffering CH in a country where you don't speak the language well. It's hard enough to communicate in one's own language - never mind trying to translate as well.

I see you can only take limited meds at the moment perhaps you could try melatonin. It is not a drug - just a natural remedy.

It has worked for me as an abortive for my last two cycles. I stop all other meds when I take it. Try looking at my posting on the medications board 'Does Melatonin work'.

Interestingly Dr. Todd Rozen , the American CH 'guru', said that a number of ch'ers do respond within 2-5 days and that, as it has no side effects, it should be the first choice as a preventative.

Best of Luck - sorry no Danish to help you - the only Scandinavian I have is limited Svensk.

regards & PF days,

Melvyn :)

Melvyn

glad you have had success with melatonin.   I am confused by your post-  do you take melatonin as an abortive???  or at night to prevent night time hits?   If you take it as an abortive- does it really abort the HA?

Wishing you pf times-

kelly

Hi Kelly,

I take only Melatonin - 9mgs at bedtime - for some people it has no effect, for others it stops or reduces the night hits - for me and others it prevents the CH almost totally.

I got the message that for the Melatonin to work you have to be clear of any other meds so I went 'cold turkey' and trusted. The first time it started to work within two to three days - the last time it took about five days - but the shear relief!!

Try reading my posts on the Meds board under the heading 'Does Melatonin really work ?' the info is there.

I tried it because it was recomended in the Dr. Todd Rozen report
I know that the link containg the report is in one of the replies to you, please read the whole report - it contains such a lot of info. The link is as follows

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Feel free to come back to me if you have any other queries  - that's why we are here - to give and to receive help and support from and to the people who know the beast.

regards and PF days,

Melvyn :)

thanks melvyn

I have used melatonin before actually.  My question was more related to using it as an abortive- I understand the use of melatonin in preventing night time hits.  

I guess i was confused when you said preventative and abortive- so i wasn't sure if you took it when you felt a hit coming on to stop the ha vs the daily night dose prior to prevent a night hit.  So i was wondering if you used melatonin as an abortive ( not as preventative) how long did it take to kick in to stop the HA from ramping up?

Have a good night!