my cluster headaches have just come back... I'm in agony with them. The good thing is I'm booked in with my neurologist on Monday but i was just curious as to what treatment is best? He mentioned an injection but I've been told oxygen is the best cure for a cluster? I want to make sure i get the right treatment. I don't think i can take much more of this pain. I've already give myself a black eye banging my head against the wall. Dint even realise i was doing it at the time because i was in such pain that i wasn't thinking straight. Now everybody seems to think my boyfriend has been beating me up... how can a headache be so bad you have 2 bang your head against a wall?... well it can!! any ideas on treatment?

              cheers,
                  Hayley

You have been here five months,  you should do some reading.

            Potter

i have read lots i just wanted some advice off people see what works for them and what dosen't. obviously some people aren't as helpful as others!

Oxygen @ 15lpm minimum.  25 lpm is better. 

Dont' use the word "cure".  There is none.  That does not mean you cannot cope or there are not methods of dealing with it.  You can and will deal with the pain.  Some of us have been doing it for many years, longer than you have been alive and we are still here.  Yes, it hurts, but you CAN deal with it and go on and have a worthwhile and productive life.  The biggest thing is though that YOU have to be proactive and take charge of your life.  If you are waiting for your Neuro to do it for you it won't get done.  YOU have to do some reading and get a handle on what you want from your Dr and then make sure you get it.  You may have to try multiple things.  Most of us have.  You may have to try things you don't like.  Most of us have.  The biggest thing is YOU have to take charge of your life and not let the beast do it.

Jerry

I thought cure was the wrong word when i was writing it. Oxygen Ive heard it the best bet, but i will have to wait and see. Ive been through tougher things than this believe it or not and made it out alright so I'm sure ill be fine. :)

                 Thanks
                    Hayley

haylz wrote on Mar 5^th, 2010 at 11:57am:

i have read lots i just wanted some advice off people see what works for them and what dosen't. obviously some people aren't as helpful as others!

You have to help yourself before we can help you.

             Potter

Hayley,

As has been said, there is no cure nor is there one set way that each of us deal with CH's.  In fact, for just about everyone on this site it's really a matter of trial and error as what works for one cycle may suddenly not work for the next one.  The best advice I can give you is to go into your neuro appointment educated with the information on this site and make sure the neuro is really listening to you.

I would also suggest that you ask for an oxygen script ASAP as it is one of the more effective ways to deal with this. 

Good luck!

Hayley, well it looks to me like you've come to this site to research and ask questions, take this beast by the horns yourself, and find out what is best to ask about when at the neurologist, so as far as I can tell tell, you're doing the right stuff! Questions are good - essential in fact.

Now it is up to us to answer your question about ideas on treatment. I'll take my stab at it and let's see what others have to say also.

From what I've seen amongst the informed clusterheads on this site, O2 does appear to be most widely accepted and popular abortive. For a whole lot of us it needs to be administered as outlined in the oxygen info link on the left of this page in order to be truly effective, which is not likely the way your neuro will prescribe it. You can decide whether you want to push the Hi LPM/non rebreather issue with the neuro - personally I'm happy just to get whatever the doc will write on the script, so I can just get the O2 and then take it from there.

Injections. Your neuro mentioned injections. I figure that must be Imitrex. Hey you may have a decent neuro there because that's a WAY better form of imitrex for CH, but a lot of doctors don't know it and prescribe pill form, which isn't for CH.

I swear by Imitrex when the O2 fails or isn't accesible. Others swear at it. It is very effective at aborting attacks for a very high percentage  of patients, but it is expensive and IMO should be used just as your backup plan, with the emphasis on O2. You'll cut way back on the expense and side effect risk by adhering to this critical imitrex tip:
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Then there are preventatives like high dose Verapamil that some have success with. I haven't tried it at a high dose, so I have no personal insight there.

That oughta get you started on your studying up for the neuro appointment, then after that's over, there are non drug/medical treatments that the neuro would be clueless about, but we could go ahead and have a real blabfest about.  8-)

[Edit] Just noticed that you're in Liverpool, so the expense of Imitrex may not be an issue, but you'll still want to take 1/3 to 1/2 injection doses to lessen any side effect or overdose risk. Also I believe it will be called "Imigran" there.

"Treatment" or "therapy" are much better words.

Hayley,

Oxygen therapy is not a cure, but it has been shown by a vast majority of Ch sufferers to be the first line of defense to abort a hit.

The injections you mention are probably Imitrex, which are also used to abort a hit.

Both of these abort hits, but neither does anything to prevent the cycle from beginning.

You and your doctor need to explore both a preventative medication, as well as an abortive. 

There are many options available to help with a hit (see the buttons to the left of your screen), oxygen, water, imitrex, as well as ice packs, exercise, no exercise, ad infinitm.  Each one of us reacts differently to anything and everything.  You need to find what works for you and it should be a combination of both a preventative and an abortive. 

I with you PF.

Sandy

Welcome to the board! What works best for me is a 2 pronged approach. When a cycle starts....

1: A good prevent, that's the med you take daily while you're on cycle to reduce number and intensity of your hits. I use lithium at 1200 mg a day. Verapamil is generally the first line prevent they try, topomax is also popular. Most go on a 2 week dosing of prednisone which will keep the beast at bay while you wait for your prevent to kick in.

2: A good abortive strategy, the headache has started now what? I have used imitrex injectables, they work great, but I hate how it makes me feel. My first line abortive is oxygen, generally less then 10 minutes for me to abort an attack. Imitrex nasal sprays are also popular.

For now, when you feel an attack starting, try chugging an energy drink. Rock star, Red Bull, Monster, any containing the combo of caffeine and taurine. Many can abort or reduce an attack using those.

What others have said is soooo true. It's critical to educate yourself and take an active role in your treatment! Welcome to the board.

Joe

You may want to also check out the OUCH UK website. OUCH stands for "Organization for Understanding Cluster Headaches."

CH is such a rare condition that most Dr's have little knowledge of proper treatments, so knowing them yourself is in your best interest. Such as, the Oxygen (O2) must be with a NON-rebreather mask and @ 15lpm.

Good Luck at the appt.,
Don

Everything they all just shared is something you should feel very grateful for.  Welcome to the board and PF Wishes

thanks for all your help. I've been the neuro today and it didn't help i tried to talk 2 him but he insisted that i tired the injection before anything else. so I'm going to try that and see where it takes me.

thanks,
Hayley

Can you request a new neurologist? Many in the UK have been successful in obtaining a prescription for oxygen. Sounds to me like you have a dingbat for a doctor.

If all you have is injections and I presume that is sumatriptan (Imitrex), follow the Imitrex tip to get more shots for your money.  Most of us do not need the 6mg shot.  I only use 2mg per injection.  This will get you buy till you get that oxygen.

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All the best!

Chad

haylz wrote on Mar 5^th, 2010 at 11:39am:

my cluster headaches have just come back...

You beared previously without adequate treatment?



Quote:

I'm in agony with them. ... i was in such pain that i wasn't thinking straight.

It's why this site exists and the only thought understandably capable and needed is reaching for something suitably assured to overtake in short time and help to in subsiding again.



Quote:

... I'm booked in with my neurologist on Monday but i was just curious as to what treatment is best?

Even Monday can be a long time.  Likely being, diagnosis retained, the doc will have notions.  Already though, previous replies of being proactive are mainly outlined such as Joe's reply, consisting of prevention and essentially an abortive.  Expressing immediate need for an abortive suited to clusters had been my first concern, preventive possibilities might be a search to an effective level and take some time but wonderful when getting there. 

The mention of oxygen has been a great first start as most hopefully you may find.  I can only repeat that.

Meantime, worth trying is having about three ice packs in the freezer to help bear, occupied a step better than the bruised look, held perhaps with a washcloth and the coldest against the pain.

Wow, I posted late, already today!   How the... just saw -- Liverpool.   

Brew wrote on Mar 8^th, 2010 at 8:02am:

Sounds to me like you have a dingbat for a doctor.

I encountered a few like that in the UK.  One asked me if I'd tried steam inhalation.  Another asked me if I'd considered that perhaps I might be imagining it, as nobody gets pain like that in their head.  You need to find a neurologist who knows and understands CH, prescribes a suitable prophylactic (eg Verapamil) and allows you to use oxygen as an abortive. It's much safer than Imiject, but not favoured much by pharmaceutical companies. 
;)

well Ive not had a headache today but I'm sure it will come soon. cant get the injection till tomorrow, it just seems because I'm young they think they can persuade me what they think is right. maybe its not. maybe it is. i don't no I'm confused!!

Liverpool is nice its realy sunny :)

haylz wrote on Mar 8^th, 2010 at 9:13am:

Liverpool is nice its realy sunny :)

Here too.  Went for a coffee, a couple bagels and some coffee shop chat in the middle of posting and the whole thread passed me by. 

Hope it works for you, I recall starting similarly many years ago.  Eventually had to press on, meanwhile, Chad tosses another helper tidbit.

It's sunny here too today. I guess now that you have your injections it is sunny all over the world!  8-)

I have to take back my previous hopeful comment about your neuro being a decent one though. It is at least good that he knows the difference between injections and pills but otherwise he sucks. Sux bad. If you find the injections don't do it for you completely it would probably good to seek out a neuro with a clue who will prescribe O2. Hey that rhymed.

The knowledge available on this site gives you the ability to educate the most arrogant of Neurologists.

Free yourself from ignorance and pain.

All the best Iddy :)

Read up on RC seeds.. When i 1st told my doctor i was useing them he said i was "silly". As he was telling me this he was getting ready to injuect me with preds, I refused. He called me 6 months later to ask me why i have not been filling my scripts. I told him " I guess im just silly".

Coach Bill

coach_bill wrote on Mar 8^th, 2010 at 9:18pm:

Read up on RC seeds.. When i 1st told my doctor i was useing them he said i was "silly". As he was telling me this he was getting ready to injuect me with preds, I refused. He called me 6 months later to ask me why i have not been filling my scripts. I told him " I guess im just silly". Coach Bill

Coach, luckily my newest neuro who I see on Friday encourages me to use seeds.  He has that "naturalist" in him.  He'll ask me if I have been using the seeds.   I never thought I could find a doc out there in my town yet, that supports it.

i think the problem was i didn't see my neurologist i saw his secretary which was a bit of a pain realy and didn't help to be honest, id rather see the doctor. they say they will be there and help you but they don't realy it took me a week to get an appointment and Ive had to book an appointment at the doctors to get the meds so that's like what 10-15days. and when your having clusters this is too long!!

Sorry to hear you're having such a bad time. What a great shame that you haven't been given 02, it's worked wonders for me.

Caron

Well, since I am on a roll this morning thought I would jump in and say that all ya'll have way more faith in the medical profession than I do.  Certain things they are essential for, heart attacks, broken bones etc etc.  I understand why people would seek a headache specialist for diagnosis to make sure nothing more life threatening was going on.

But once I am clear about my medical diagnosis, I'll take my chances with my 25 years of CH's and the combined millennia of experience on this and the clusterbusters website.  I always read the doctor stories in shock as ya'll try to talk them into the most universally successful treatment, oxygen.  All of the healthcare professionals I have casually spoken to about clusters have no real idea what I am talking about (not headache specialists). 

Once while about to get crushed in a lock (in a Canadian dam) by a big boom of logs I was asked, "what would you do if you thought no one was looking out for you right now?"

I'll tell you one thing, I didn't get crushed because the dam operators weren't watching.  I sought what we called in my labor union days, "self help".  Find a way to get what you need!  The dam operator is probably interested and concerned, but I was the one who was going to pay the consequences.

Call that "Shaggy's rant #1" on taking the bull by the horns and beating the beast.  Diatribe over you can all return to your morning coffee.

--Shaggy (way too caffinated right now sorry about the excessive verbage and cynicism of portions of the medical community.)

After 30 years with CH I couldn't agree more with those first 2 paragraghs of yours Shaggy.

Well put.  :)

Hi haylz,

It's important that you learn how to properly administer and at least try high-intake oxygen therapy as soon as you possibly can. More CHrs have gotten more relief from its use than probably all the other CH treatments combined. If you don't get relief from either the oxygen or the various other therapies advised here, as a last resort go to:

                                                       START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read as much as you will on the site and then go to their message board in the middle, near the top of the page where the word "NEW" is spinning around. Read, learn and ask questions.

If you learn as much as you can on these two sites and intelligently apply what you have learned to your own condition, I promise you will find your way out of this Hell!

Good luck and God speed,

Ron

i have yet to see a doc so i have to use whats available to me...   but this is what i do.   1. have a stock-pile of energy drinks  2.  brew a strong pot of coffee and put it in your frig.  3.  i crush up 50 RC seeds every 5 days and make tea of them.  4.  i read on here some-where this guy tries to redirect his blood flow to his hands-feet.  this sounds suspect i know but on the first sign of the business coming my way...  i drink my redbull, slam the coffee, get some ice water and just try and stay relaxed as long as possible with my  hands to my side...   eventually i feel my arms and hands get heavy....   i try and stay like this and sometimes with the combo of everything else i can abort the attack....  and sometimes not.  but even if it doesnt completely "work"..  it does keep me calm for the most part...   maybe this could help you.

take care
-dax

Good advice i think i might try this! most the time I'm in work and people think oh shes got a bloody headache again and they no how stressed out i can get during an attack so i cant look any more strange than i already do. haha.