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haylz

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what can help me
Mar 5^th, 2010 at 11:39am

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

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: what can help me Reply #1 - Mar 5^th, 2010 at 11:49am You have been here five months, you should do some reading. Potter
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haylz CH.com Newbie Offline I Love CH.com! Posts: 24 liverpool Gender:	Re: what can help me Reply #2 - 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!
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Callico

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Re: what can help me
Reply #3 - Mar 5^th, 2010 at 11:59am

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

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haylz CH.com Newbie Offline I Love CH.com! Posts: 24 liverpool Gender:	Re: what can help me Reply #4 - Mar 5^th, 2010 at 12:15pm 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
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: what can help me Reply #5 - Mar 5^th, 2010 at 12:46pm 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
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wip5150

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Re: what can help me
Reply #6 - Mar 5^th, 2010 at 12:48pm

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!

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bejeeber

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Re: what can help me
Reply #7 - Mar 5^th, 2010 at 2:25pm

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. Cool

[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.

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« Last Edit: Mar 5^th, 2010 at 7:00pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: what can help me Reply #8 - Mar 5^th, 2010 at 2:47pm "Treatment" or "therapy" are much better words.
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Sandy_C

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Re: what can help me
Reply #9 - Mar 6^th, 2010 at 12:57pm

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

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Guiseppi

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Re: what can help me
Reply #10 - Mar 6^th, 2010 at 10:36pm

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

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Skyhawk5

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Re: what can help me
Reply #11 - Mar 6^th, 2010 at 11:19pm

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

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: what can help me Reply #12 - Mar 8^th, 2010 at 12:26am Everything they all just shared is something you should feel very grateful for. Welcome to the board and PF Wishes
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haylz CH.com Newbie Offline I Love CH.com! Posts: 24 liverpool Gender:	Re: what can help me Reply #13 - Mar 8^th, 2010 at 7:28am 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
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: what can help me Reply #14 - Mar 8^th, 2010 at 8:02am 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.
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Chad

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Re: what can help me
Reply #15 - Mar 8^th, 2010 at 8:34am

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

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When the PAIN starts, I FIGHT back!

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Kevin_M

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Re: what can help me
Reply #16 - Mar 8^th, 2010 at 8:43am

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.

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« Last Edit: Mar 8^th, 2010 at 8:52am by Kevin_M »

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: what can help me Reply #17 - Mar 8^th, 2010 at 8:51am Wow, I posted late, already today! How the... just saw -- Liverpool.
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boxcorner

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Re: what can help me
Reply #18 - Mar 8^th, 2010 at 9:06am

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.
Wink

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« Last Edit: Mar 8^th, 2010 at 9:17am by boxcorner »

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haylz CH.com Newbie Offline I Love CH.com! Posts: 24 liverpool Gender:	Re: what can help me Reply #19 - Mar 8^th, 2010 at 9:13am 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
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Kevin_M

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Re: what can help me
Reply #20 - Mar 8^th, 2010 at 9:36am

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.

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bejeeber

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Re: what can help me
Reply #21 - Mar 8^th, 2010 at 11:04am

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

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.

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« Last Edit: Mar 8^th, 2010 at 9:20pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: what can help me Reply #22 - Mar 8^th, 2010 at 6:55pm 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
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: what can help me Reply #23 - 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
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Chad

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Re: what can help me
Reply #24 - Mar 9^th, 2010 at 10:55am

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.

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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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