hi this is my 1st time i write here
sorry that i dont spell good i live in israel so my english is not that good
my name is david i have cluster headache since i was 15 years old
im now 33 and its getting worse
im now in the cluster time and iv been in pain for almost 3 months
its the longest iv had it
i tryd this year prednison but its not helping
so all i have left is the imitrex and oxigent
there is only 1 doctor in israel that knows how to treet cluster but it is very hard to get in touch with her she works only one day a week and it is inposiball to see her
i dont know what to do
i dont know people that have cluster in israel
iv got no one to talk to and no one to help me
iv been crying and banging my head in the walls for almost 3 months now
it started on the 1st of augost and 2 weeks ago it stoped but 3 days ago it came back
i dont know what to do
i dont know if i must take more prednison
cause the doctor like i said i cant reach her
so i must just be in pain
if there is any one that can help me please help
iv been stuk at home like it is jail
and there is nothing i can do just more and more imiterx
the only good thing about this is that imiterx dont cost a lot of money here i pay for a box 40 shekel its about 13 $
so its not that bad
i also use rezalt and some times zomig
please help me
i need helf fast
no one else can
thank you david

oh david i feel for you my friend.
please get some oxygen to stop the attack.
this is what you need
oxygen tank with a regulator of at least 15 litres per minute
a non rebreather mask
read the oxygen tips to the left of the board.

you can also try to drink an energy drink or super strong coffee

you have people to talk to now, this site is full of caring and compassionate people and we understand your pain and frustration. 8-)

thank you
i have oxygen tank at home sometimes i must use it for 40 minets
and if it dosent help i use imitrex

you said coffie and energy drink?
is that good?
i was told that caffine is not good and can start a headache

i get usaly one time a year for a month cluster
and then it stopes
this is the 1st time it has been so long

Hi David,
Really sorry ...
Press the "where we live" on the left menu, there are 23 guys and gals from Israel, try to contact.
Try the imitrex tip.
Try energy drink, most of us use it.
PF,
Steve

Hi David and welcome. Sorry you are having a very rough time right now. In your post you said that all you have left is the imitrex and oxigent. Do you have oxygen? If you do get on it at the very first sign of an on-coming hit. Just what "on my knees" said:
100% o2 at at least 15 lpm with a non-rebreather mask. No outside air what so ever, pure o2 only. Keep on it for a few extra minutes after the hit settles down.
Also, try the energy drinks that contain both taurine and caffiene (SP?) and chug it back fast as possible. Do not take too many of these drinks per day. Ice helps also, place a frozen bag of peas or similar to the base of your CH side of your neck, right under your hair line.

Again, sorry you are hurting so badly, others will be along soon with lots more advice and support.

You are not alone anymore.
  Barry :)

David,

You have come to the right place.

Don't wait to see this one doctor.... Gather all of the information, about Cluster Headaches, that you can find and take it to your "regular" doctor. Educate your doctor. This is a condition that you will need to work with your doctor on. There is no quick fix. Send your doctor to this web site if he ( or she) has questions that you cannot answer.

If your doctor refuses to listen to you...... Find another doctor...


Good Luck and God Bless

Jim

David, I have to get my butt to work as I am running a little behind but i see you have o2. I can stop a hit anywhere from as little as 4 minutes up to 12 to 14 minutes. What do you have for a mask? The nose tubes do not work if you are using them. Let us know and read everything you can to your left. There is a ton of knowledge here.

Hang in there.

 Barry

thank you all
iv been looking for people like you for so many years
i will try red bull and coffie
i have an oxygent tank at home
and a mask
it works most of the time
but if it is too strog i use imitrex
it makes me want to sleep but i dont sleep because if i do i wake up with pain
im sceard to sleep
is there any other drugs like prednison
that help to stop attacs?

What I find helps me alot is doing as many push ups that I can when I wake up from the pain.
I wake up 3 to 4 times a night. Try and cut out the imitrex if you can, It can cause rebound headaches and might prolong the cycle.
If you can't go without, it's understandable of course.

Try the push ups, I can't promise that it will work but it surprised the hell out of me that it was that effective. Maybe it will work for you too. Just remember to do it at once when you wake up from the pain or you feel a shadow. Hope your cycle ends soon, I am in the middle of mine now, so you are not alone buddy.

Hey David, welcome to the board, sorry you're hurting so much. You have a pretty good abortive strategy, something you take when a headache starts. You need to look into a good preventative strategy.

A preventative medication is one you take daily while on cycle, that is while you are having attacks. The idea of a prevent is it will reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day. Verapamil is also a very popular prevent, although we take it at doses that are higher then most doctors are used to. Topomax is effective for some but many have posted negative comments about the side effects.

Many other meds to read about and discuss with your doctor. This is a rare condition which requires you educate yourself and help your doctor plan your treatment. Stick with us, we'll help you all we can.

Guiseppi

PS: Is your mask a Non Re Breather? For oxygen to have the effect we need it's critical your lungs get ONLY pure oxygen. No outside air, no air you've exhaled. That's whay the high flow regulator and Non Re Breather mask are critical.

i will talk to my doctor about this and see how he can help me
thank you very much
i will buy on line a good mask it seems that i have
the bad one

i forgot to ask
about the lithium you take
for how long do you take it?
every day of the cycle?

Since you cannot locate a doctor who has experience treating headache, the next best approach is to find a doctor who is willing to be educated by you. We can supply plenty of medical articles which you can print and give to the  doctor. It's important to use material which comes from medical sources so that the doc can trust what you may be giving. Suggest print these two:

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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)
================
Treatment guidelines from Europe

------
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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)
=================
Headache. 2006 Sep;46(:1246-54.  
 
Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468  
==========
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.

David my friend, welcome to the place where you will find all the info and support you need.

For a good night's sleep you could try Melatonin. I'm no expert on it, as I've only found out about it when I was already out of cycle, but I am certain someone more knowledgeable will step in and educate you on the Melatonin.

I feel bad to hear you are in such a messed up condition right now, but I promise we will help you any way we can.

Painfree days ahead for you from the Netherlands.

Pascal.

david;
i may not have been clear so i will try it again, dont  take red bull and coffee. just one or the other and shouldn't take more than three or so red bull drinks in a day. alot of us use this to help you will be surprised i think, but drink it fast and all at once as soon as you think a hit is coming.
save the imitrex for the really bad attacks.  here in the usa imitrex is very expensive (hundreds of dollars)
praying for friend

thanks iv got red bull and will try when it attacs again
it wont be long now  :'(

i hate that i have to wait for it

again thank you every one for your help
you are making it alot easy for me
god bless all of you
we sheare the same pain

stay strong. You can do this.
all the best
thebb

As fas as the lithium yes, I take it daily when I am on cycle. I am episodic like you, meaning I have headaches for several months, then months and even years in between cycles. Here is my routine, it's what works for me, but it took my doctor and I quite a bit of trial and error. Everybody is different, especially when it comes to CH!

When my cycle starts I go on a prednisone taper starting at 80 mg a day and weaning down to zero. It keeps the CH at bay while my preventative builds up. I take 1200 mg of lithium a day, 300mg 4 X a day. This will typically block up to 80% of my attacks depending on how strict Iam about avoiding my triggers. Triggers vary a lot from person to person, mine are alcohol, stress and messing up either my sleeping or my eating cycles.

For abortives I use oxygen and the occasional imitrex injection. The proper oxygen mask will make all of the difference in the world to you. You may find you can all but eliminate the imitrex if it works as well for you as it has for me.

Bob has given you excellent reading material, as I said before, it's up to you to educate yourself, then partner with a doctor to help plan your treatmnt.

Guiseppi

Hi;

Sometimes coffee works, sometimes not...for my husband anyways. This thing is so wierd...what works for some might not work for you but just keep trying. We are with you.

Hey;

I gotta' run but just read that you're scared to sleep. So are we. He always wakes up with one. Unfortunately avoiding sleep is just making him (my husband) too exhausted to deal. So try to sleep regularly...at least maybe you will get a little rest in between. We are trying. I agree about educating your Dr. instead of waiting for a specialist or one that already knows about it. If they are a good Dr. they will research it out & try things with you to help. If they aren't...get a new one. This is your life, not the pain's. FIGHT!!!

again thanks
i tryed prednison but started at 60 mg and then went down evry 3 days till i got to 0
the thing is that now its been a month and a half since the last prednison
the attacs were very stong after that
here imitrex is 13$ so i had nerly 30 shots since augost
my cycle up till this year was
that every year i got cluster for one month when i was 23 it was a month and a few days
it came every may and has been like that til i turned 30
and last year it was the 1st time it dident happen it skipet a year
i was happy maybe it was the end but it sudenlly came at the end of july and it stoped the end of september for a week
now its back and im sceard that it will be for a long time
so i dont know what drugs to take and from where to start
do i do prednison again ? i never heard  of lithium but i will look into it
also the verapmil . i hope my doctor can know how to mix all this
i just want it to stop
i want and i need to leave the house. when i got out im sceard that i have to find myself in a crapy bathroom puting imitrex in my body
when i get a regular headache im so happy that an asperin can help
this is not normal  the pain killes me i dont know how i can live with this

Oh you CAN live with this, there's thousands of us here doing just that. The key is to take a proactive stand against it. Whether on or off cycle, stay on this board, keep up with the latest treatments, and always be ready to do battle. It's how we ALL live with the beast. Hang in there.

Guiseppi

Guiseppi wrote on Oct 9^th, 2008 at 12:54am:

Oh you CAN live with this, there's thousands of us here doing just that. The key is to take a proactive stand against it. Whether on or off cycle, stay on this board, keep up with the latest treatments, and always be ready to do battle. It's how we ALL live with the beast. Hang in there. Guiseppi

I agree with Guiseppi, he put it best.

We all know how hard it is, and will be there to support you through it. You WILL beat this beast! You're stronger than the beast, and much stronger than you even realize.

Good luck, hopefully all of these things will help you, I know a lot of them have helped me.

--Mystina

thanks

How are you feeling today?

 Barry

Hang in there David.
    I'm up this morning with a K2-K3.  Just a small one to let met know the Mutha is still in there.
    Anyway,  what seems to work for me is the Prednisone Burst for 10 days, which I think you did.  I start with 60MG and taper down to 0.
I also start 360MG of Verapamil at the same time and maintain that until things are done.  I get little or no attacks during the day.  The majority of them come after about an hour of sleep.  This seems to improve after I taper off the Prednisone.
    Also, for sleep I use Ambien along with 9MG of Melatonin.  Seems to have helped in the last 3 nights. (started meds 9/29).
     I hope all the advice you get from all of these wonderful folks here gets you some relief soon.
     Hang tough and keep telling yourself.  It can't kill me and it will eventually go away.
                                  PF to ya
                               Just Plain Carl

i had 2 more attacs last night and one this morning
i tryed the red bull i think it helped a bit
i had 2 red bull it hold for a few hours but befor i went to sleep i took rezalt and it let me sleep till 11 i got up with a bad head and had some oxygent for 40 min
now im ok
waiting for the next one
it will happen soon

what is k2 and k3 ?
i dident understand

i had a good read last night from what bob sent it was very helpfull
ill copy this and give to my doctor

i still wonder if i should start again with the meds now after i finished a month ago with prednisone

or is it just rebound the last 3 days have been hell

did the red bull help?

oops sorry i didnt read you earlier post.
well it sounds like everything gave some relief. be careful drinking two red bulls.
i hope you have realized you are not alone and thousands of us deal with this and some of us are chronic and deal with it most everyday.
you will survive it won't kill you.
the term k2 and more refers to the kip scale, you can read it to the left. we use it to tell each other and our supporters how bad the pain is, please read it you will find it very accurate.

Hi David! [smiley=wave.gif]

I just wanted to welcome you to the board.  We all feel for you.  Try to tell yourself that you will get through this.  You WILL!  We are here for you, don't forget that.  Please take all the great advice that you have been given.  Read, read, read.  You then will be able to help your Dr. help you!

Hang in there..... I'm sending you happy, pain free thoughts!  [smiley=hug.gif]


Jeannie

i cant imagine having it every day
one month is hard as hell every day is a nightneare
im happy that i found this site
and that i found all of you
i was climbing the walls alone
now i know we are all together
everyone have been so helpfull
good to know there are some good people in the world

i hope that all the drugs you all were talking about could be found in israel

ill be looking for verapamil ,treximet . and litium
topomax i read about it it scares me i dont want to forget things
im a theatre actor so i need to remember text

David, be fore warned that Verapamil tends to make one a little forgetful on the short term memory. What flow rate is your o2 regulator? I just feel you are not getting the o2 delivered into your body the correct way. The mask is a big part and if you cannot get a proper mask PM me and I will send you a non-rebreather mask instantly. If I had a spare Clustermasx I would send you one of them, but I have only the one and I guard it like you would not believe  ;)

I hope you find a combo that works for you. It takes a bit of trial and error to find the "cocktail" that works. PF wishes.

  Barry :)

Hello David,

I took Prednisolon for a long while, and after I stopped I had a very difficult period of some weeks. Constant headaches and the CH pain was also worse than otherwise.

I also took topiramate and I swear my IQ dropped at least 50 points. I was completely doped up. Plus it didn't help with the pain.

Nowadays I'm med-free and also a chronic, so I deal with this several times every day. The neurologist would want to prescribe me several drugs (which haven't helped) at once to have a sort of synergy effect. I'm going to refuse that. Nothing else has helped me than the steroids, including oxygen and triptans.

Considering the above, I think it's very important to have the right attitude towards the headaches. After all, it's only pain...and it goes away. Life is still very much possible outside it. Of course all this depends on how bad your individual headaches are and how often you get them, but still - take them as they come and live life to the fullest during the other time. Just yesterday, my boss was telling me how much more clearheaded I seem now and how he feels like he has to worry about me far less. He can depend on me more now that I don't take meds.

I wish all the best to you. You might not be able to beat the beast, but you sure as hell can avoid letting it drag you down.

- Best regards and PFDAN to everyone,
Rosa

thanks

i took all your advice and copyed for my doctor info about ch
(thanks bob )
he read it on the weekend and yesterday we had a long talk
and he said that because the special doctor wont help that he will
and together we will fight it
so we are trying
prednisone 80mg going down to 0 in 10 days
and verapamil 80mg 3 times a day for 3 days
then 120mg 3 times a day till the cycle ends
i wanted to try the lithium but he said he had to learn more about it so that will happen next cycle
i hope that what we are doing is good
please comment if we are wrong i dont want to do something bad to my body
this is the worse cycle i ever had and the longest
so thanks again to all of you for you kind words and help
it makes it eazy when im not alone
and now im not alone anymore

I'm so glad to hear that your doctor is helping you! I hope that works and helps to break your cycle! :)