Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 
Send Topic Print
god please help me (Read 6880 times)
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
god please help me
Oct 8th, 2008 at 6:58am
 
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
Back to top
  
 
IP Logged
 
on my knees
Ex Member



Re: god please help me
Reply #1 - Oct 8th, 2008 at 7:13am
 
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. Cool
Back to top
  
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #2 - Oct 8th, 2008 at 7:21am
 
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
Back to top
  
 
IP Logged
 
itotka
CH.com Old Timer
****
Offline


Oxygen


Posts: 465
Budapest|Solar System
Gender: male
Re: god please help me
Reply #3 - Oct 8th, 2008 at 7:23am
 
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
Back to top
« Last Edit: Oct 8th, 2008 at 7:25am by itotka »  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
WWW itotka  
IP Logged
 
barry_sword
CH.com Alumnus
***
Offline


Mountain Biking Keeps
Me Sane


Posts: 3947
Bracebridge, Canada
Gender: male
Re: god please help me
Reply #4 - Oct 8th, 2008 at 7:31am
 
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 Smiley
Back to top
  

QUIT SMOKING SEPT. 03 2005
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
shelticon2
CH.com Junior
**
Offline


I Love CH.com!


Posts: 52
Greensboro NC
Gender: male
Re: god please help me
Reply #5 - Oct 8th, 2008 at 7:38am
 
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
Back to top
  

Cage the Beast
 
IP Logged
 
barry_sword
CH.com Alumnus
***
Offline


Mountain Biking Keeps
Me Sane


Posts: 3947
Bracebridge, Canada
Gender: male
Re: god please help me
Reply #6 - Oct 8th, 2008 at 7:46am
 
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
Back to top
  

QUIT SMOKING SEPT. 03 2005
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #7 - Oct 8th, 2008 at 7:48am
 
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?
Back to top
  
 
IP Logged
 
MaxPayne
CH.com Veteran
***
Offline




Posts: 146
x0|Oslo|Norway||0|0|
Gender: male
Re: god please help me
Reply #8 - Oct 8th, 2008 at 8:14am
 
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.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: god please help me
Reply #9 - Oct 8th, 2008 at 8:38am
 
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.
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #10 - Oct 8th, 2008 at 10:31am
 
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
Back to top
  
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #11 - Oct 8th, 2008 at 10:35am
 
i forgot to ask
about the lithium you take
for how long do you take it?
every day of the cycle?
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: god please help me
Reply #12 - Oct 8th, 2008 at 10:44am
 
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.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
(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.

Back to top
  

Bob Johnson
 
IP Logged
 
maalstroom
CH.com Old Timer
****
Offline


''Dance to my tune''....
the hell I will!


Posts: 491
the Netherlands
Gender: male
Re: god please help me
Reply #13 - Oct 8th, 2008 at 11:14am
 
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.
Back to top
  

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
IP Logged
 
on my knees
Ex Member



Re: god please help me
Reply #14 - Oct 8th, 2008 at 11:52am
 
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
Back to top
  
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #15 - Oct 8th, 2008 at 1:01pm
 
thanks iv got red bull and will try when it attacs again
it wont be long now  Cry

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
Back to top
  
 
IP Logged
 
thebbz
Ex Member



Re: god please help me
Reply #16 - Oct 8th, 2008 at 2:25pm
 
stay strong. You can do this.
all the best
thebb
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: god please help me
Reply #17 - Oct 8th, 2008 at 2:29pm
 
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
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Izzy
CH.com Junior
**
Offline


Choose life.


Posts: 70
Red Deer, AB, Canada
Gender: female
Re: god please help me
Reply #18 - Oct 8th, 2008 at 2:31pm
 
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.
Back to top
  

"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”
 
IP Logged
 
Izzy
CH.com Junior
**
Offline


Choose life.


Posts: 70
Red Deer, AB, Canada
Gender: female
Re: god please help me
Reply #19 - Oct 8th, 2008 at 2:35pm
 
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!!!
Back to top
  

"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #20 - Oct 8th, 2008 at 4:33pm
 
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
Back to top
« Last Edit: Oct 8th, 2008 at 5:00pm by david_dps »  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: god please help me
Reply #21 - Oct 9th, 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
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Pixie-elf
CH.com Hall of Famer
*****
Offline


I've tried the rest, and
busting is the best!


Posts: 517
Beaumont,Tx
Gender: female
Re: god please help me
Reply #22 - Oct 9th, 2008 at 1:03am
 
Guiseppi wrote on Oct 9th, 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
Back to top
  

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It's saved my life.
 
IP Logged
 
david_dps
CH.com Junior
**
Offline


I Love CH.com!


Posts: 26
israel
Gender: male
Re: god please help me
Reply #23 - Oct 9th, 2008 at 6:09am
 
thanks
Back to top
  
 
IP Logged
 
barry_sword
CH.com Alumnus
***
Offline


Mountain Biking Keeps
Me Sane


Posts: 3947
Bracebridge, Canada
Gender: male
Re: god please help me
Reply #24 - Oct 9th, 2008 at 6:11am
 
How are you feeling today?

  Barry
Back to top
  

QUIT SMOKING SEPT. 03 2005
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
Pages: 1 2 
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!