Hi.  I am the new wife of a clusterhead.  We've been married almost a year.  He is 6'3, 220 pounds, drives a payloader, carhauler and a 4x4 truck.  And right now it's 4 in the morning and he is sitting in front of the ac unit at the kitchen table (where he has spent most of his nights for the past 4 weeks) with an ice pack on his neck and a bucket at his feet.  And I can't make the pain go away.............I can't help him.  I want desperately to wrap my little arms around his big strong body and take it all away............

He's suffered from these for 20 years now. 

I tried to get the doc to give us a script for O2 like you all say, but she won't do it because we don't have insurance.  We make just a little too much for state aid and not enough to afford insurance.  I want to make another appointment for him in the morning, I want to beg her for the O2.  I just don't know what to say.  Doctors intimidate me.  They know more than me.    He wants to try for a script for the Imitrex, too.  He wants that first.  He says when they gave it to him in the hospital it was like an off switch. 

There's alot of information on this site.  Almost too much to process.  I have filled a page in the hour I've been on tonight.  Seems I have alot of research to do. 

He's so worth it!

Hoping for O2 and Imitrex!!

Hi there,

I'm sorry for you and your husband.
Not a supporter myself but a sufferer.

Imitrex works like a charm to me but knocks me out cold. It is pretty expensive in Belgium and probably much more difficult to get your hands on than O2.
I don't use O2 but have an appointment scheduled to discuss it with my doctor.

You know, topics like this dazzle me.
People who are in dire need of specific treatment should not suffer more than they have to, insurance or not, government aid possible or not... It is the government who should make sure that people can get the treatment they need to get! It makes me angry...

tarijo, I'm pretty new here myself (just a couple of weeks) but don't be intimidated by the info on this site.
Ask al the questions you need, there are a lot of wonderful and helpful people here who can be quite understanding, posses a lot of experience and can therefore provide a lot of information on several different domains.

I hope your hsuband will get rid of his attacks soon and that the pain will stop! Take care.

Tarijo - Do print out the information on Oxygen here and take to the doctor. We often find that when a doctor thinks that oxygen is too expensive is because he/she thinks the sufferer needs a concentrator 24/7 and yes that would be expensive. Your husband needs a tank with a regulator that exceeds 15 LPM (25 would be better) and a non-rebreather mask (which you can buy here if the supplier cannot provide.)

This set up is much cheaper than the measly 6 imitrex shots my husband is allowed through insurance. We actually get 8 tanks of 02 at a time and that way when he goes through the first 5-6 I can call for more.

Thank you for helping him. If you want to chat more about the support aspect please see us down in the supporters corner. We'd be glad to visit with you.

Christy

Quote:

Doctors intimidate me.  They know more than me.

Not necessarily so don't let them do that. Look around and maybe go armed with some of the good info found here. Lots of it if necessary. A good neurologist may be the answer but then without insurance, it would be tricky. A neurological exam is very non invasive and very boring, by the way. You might be able to find a way to obtain O2.

For now, here is something to try that worked for me:

Dr. Wright’s Circulatory Technique

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Increased circulation will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as filling your hand with redirected circulation. The important part is that it has to be done without interruption until it works. Do not give up in frustration. It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I had about a 75% success rate shortening these attacks. My 20 minute hits were often reduced to 10 minutes or less. Once proven that I had a chance to deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This draws some circulation away from the head and sounds good to me. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain.

I hope this technique is helpful and I wish you the best of luck.

Good to meet you too.

Charlie

Hi Tarijo.  Well you just proved that you are an excellent supporter by reading the stuff on this site.  A couple things....

I am guessing that you will know more than most doctors about Cluster headaches after spending a day on this site.  You will most likely need to take matters into your own hands and get the medications you need.

You won't be able to do much during an attack so don't feel too bad.  I don't want anyone near me during mine.  If I am kipping big, just stand back and leave me be.  Ask your dude (you may already have) what he wants for attack support.  Make sure he is pain free for this discussion.

Nighttimers have had decent luck with melatonin.  Read about it on this site.  Many have had luck with caffeine/caffeine and taurine (red bull etc) but keeps people awake if taken late enough.

Oxygen can be bought at welders supply stores and O2 masks and regulators online. 

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

Since most people will tell you to get a doctor, I will tell you not to.  If you know it is CH and nothing more serious, take matters into your own hands and get the relief you need.  Doctors don't tend to know much about these and will give you medicines that don't work.  A headache specialist might be different but after you wait a month or 2 to get an appointment your husbands cycle will be over.  Pharmaceutical medicines have a lot of side effects and all this stuff will cost a ton.

Melatonin, caffeine, oxygen and cluster busters will be a potent arsenal.  Won't cure the disease, but will dramatically change the game in most of us here :D

--Shaggy >:(

I didn't even get through your whole post and I irritates the heck out of me that the doc won't prescribe O2.
It should be no business to them if you have insurance or not.  You can pay out of your pocket like a lot of us do, but without the Rx it can be frustrating unless your hubby has some welder buddies or contacts.  We all know what he is going through...those years of suffering without abortive techniques/drugs.  Keep at the doc for that Rx.  Read or print as much as you can on here to get more info.  Have your hubby try 6 or more mg of Melatonin/night (I've used 9mg in the past) to get a good nights rest.  Energy drinks with 1000mg of Taurine at the first sign of a CH.  Just read, read and read some more.  PM any of us with questions that you don't feel comfortable asking us here.

Best of luck and I wish your hubby some PF days real soon :)

At some point in these 20-years was he diagnosed as having cluster h by a good doc? IF not, then you have a problem of treating a condition which may not be cluster H and using the appropriate med becomes an issue.

Suggest you call the social worker at your largest hospital and see if they have a low cost clinic or doc who will help.
=====
Print out this article for your learning.




 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
========
The preventive meds listed in this article area really necessary and might be affordable. Worth checking with your drugstore and asking about discount programs which some companies offer.
-----
Cost of Imitrex is an issue; same discount program is available. The alternative to Imitrex is the following. Your doc can give you a sample and you will know wiwth 1-2 uses whether it works for your husband. If it does, the cost advantage is major--about $3/dose--and would give some affordable relief.

Print this article for your doc:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Unless his attacks are always when at home, the idea of using oxygen in his working settings looks like a near impossible barrier. A second major reason for suggesting you explore the olanzapine.

Welcome to the board.....supporters rock our world. ;) Sadly my poor wife has been there almost since these damned things started. We do hate how much it affects you guys.

Look into welders oxygen. It is exaclty the same as what's in the medical bottles and many people here already use it. When my insurance wasn't paying for my 02 I was renting E-tanks for $4.25 a month, and refilling them for $11-$13 apiece. Welders 02 is even cheaper.

Do check out our supporters section, lotta pretty neat people who have been and are, where you are now. [smiley=hug.gif]

Joe

tarijo wrote on Jun 14^th, 2010 at 5:44am:

Doctors intimidate me.  They know more than me.

Not after after you've read here for a couple of minutes they don't!

Sorry to say that doctors are generally fumbling idiots without a clue when it comes to CH.

Before we get into the real powerful therapies I want mention something about home remedies - has your husband tried putting his nose right up to that air conditioner vent and breathing deeply at the onset of an attack? In a pinch this can abort an attack for some of us some of the time, especially when done with a very focused freeze blast form a car air conditioner. He'll know it has worked when he finds his CH replaced with a very pleasant in comparison "ice cream headache".

Moving right along, people report here that they just use welding O2 without a prescription, and that it is the same exact stuff as medical O2. Apparently pretty cheap too. Since he's a big guy I'm guessing he may especially need a high flow regulator. Those are available online, but medical supply places generally don't have them, so it could be a good idea to start looking into that right now.

Initrex injections. Yes they are one powerful abortive! Personally I feel zero side effects from them (I use them as a back up in case the O2 doesn't work).

This very critical tip will help stretch the imitrex  supply dramatically and save you a ton of bucks:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Plus I think there's a program for affordable imitrex for those without insurance.

Over at clusterbusters.com there are those who decide to go non toxic with a preventative potentially more effective than any drug - we've seen some stunning success stories lately. Here's a video about it:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Tarijo,

Hang in there.  I am a sufferer not a supporter, but in this case knowledge is power.  Use this site (most of all) and other sites where they explain CH.  Sometimes it is difficult for the patient to put in words what they need.  You need to be his advocate.  If you inform a doctor on the condition and you feel they are giving you a run around and not believing you, just keep asking "Why".  Let them keep explaining themselves until you feel you have gotten an adequate answer.  If they can't explain themselves, find another doctor.    You know more than you think.

Good luck.

Brett C.

Quote:

Doctors intimidate me.  They know more than me.

I seem to be the 3rd. one to copy and paste what you wrote and say something about it.

At one of our conventions we had a speaker who told us this:   Doctors get exactly 5 hours of training in medical school on headaches.   (let that sink in )

humming to myself.

5 whole hours!!!!!!!  That is 5 hours on every type of headaches.  Can you see why we have to do the research, the advocacy for ourselves?  This site has more information on this condition than anywhere else.  It was put together from years of research and learning by those of us who suffer and from the very very few Neurologists that we have on our side.

Please look into welding oxygen due to the fact that you have no Insurance.  I have both, but my medical 02 is only 10.00 per tank and is very affordable.

Please stick around as I know you must have a 1000 questions. 

Linda

Quote:

Doctors intimidate me.  They know more than me.

Don't be intimidated by doctors. They are only human, just like you and I. The only difference is that they've been to medical school and most of us here haven't.

With the amount of information on here, in a few hours you'll know so much more than they ever learnt at medical school, which will have concentrated mainly on standard headaches and migranes. I suspect that cluster headaches might have got little more than a passing mention.

Once a doctor is working as a GP, it is likely that due to the relative rareity of cluster headaches that they have only come accross a handful of sufferes at the most.

This means that a doctor is more likely to be intimidated by you knowing more than they do.

A good doctor should be pleased that a partner of a sufferer has taken the time to learn as much as they can about cluster headaches as it will make it easier for them.

Print out the information Bob posted in this thread and give your doctor a copy too.

Hey Tarijo,

Good to see you both made it here!!   

Kate
(facebook)

It was you?   THANK YOU SO MUCH!! [smiley=hug.gif] Thank you!
This site has been so very good for us!  He wasn't gonna check it out at first.  It was the oxygen thing I told him about.  He went out and tried our torch oxygen.  When that worked and the ideas about the frozen hat and frozen bandanna helped, and I kept reading little things to him he checked it out.  I am so glad he did.

THANK YOU AGAIN!  I can't thank you enough!!!

All of your replies are so very appreciated!  We've been working on the oxygen thing all day.  The doctor that we seen last week at the hospital was actually a nurse practitioner who had worked for many years with neurologists.  When I called her yesterday to  make another appointment she said she wanted Perry to go to a neurologist and after calling in some favors she got an appt for him for this Thursday afternoon.  Otherwise it was a 4-6 week wait.  Way too long.  She says that they always have samples of meds for cluster sufferers to try.  I'm very hopeful. 
We run an auto salvage yard out here and have access to welding oxygen.  I did find out that the only difference between medical O2 and welding O2 is that they "vacuum" out the medical tanks before refilling them.  Those things are pretty well sealed anyway.  I can't imagine how anything could into the tanks anyways.  I'm just not sure which regulator we're suppose to look for.  M tank is the size we use for our torch.  I need to call the company we use to fill those tanks.  ANONYMOUSLY and ask if they require a script for those medical tanks.  Or find out how much the deposit on more tanks will be. 
I had Perry pick up some melotonin at the grocery store today.  I had read the name several times on here, but really had no idea you could buy it anywhere.  He grabbed the 5 mg, though.  We'll go tomorrow and pick up the 3 mg, too. 

I want more people to be aware of this condition.  I feel like screaming when someone says "oh-migraines, huh?  I've had those".  NO.  IT"S NOT A MIGRAINE!  I've had migraines, I have chiari headaches constantly-but they are NOTHING -ABSOLUTELY NOTHING compared to what I have seen my beloved husband go through.  Compared to what I've read other people go through with these hellish attacks.  I want to make more people aware of the use of the Psychedelic drugs to help with these. 

Knowledge is power.  The more people know.  The better.

It was a little unorthodox.... but it worked  ;)

[smiley=hug.gif]

tarijo,

If you have those "M" tanks, purchase the optimask from the ch.com store on the left of your screen and get a regulator that blasts 15LPM or higher.  Your other half should know the fitting size which should be a CGA-540 on those large tanks.  Once you have that, get him on the tank at the very first sign and you should see great success once he gets it down.  I just started O2 therapy this cycle and my aborts are at 100% within 5 minutes or less. 

Best of luck!

Chad

Awesome success rate, Chad!   :)  5 minutes!  Oh, to have him not hurting that fast!! 
I have a friend who was an engineer in the army.  He is really good at fixing mechanical things.  He says he can make us a regulator that will work for this.  Just show him the picture he says and he can do it.  Was kind of wondering if that was -idk- ok?  Personally I would rather have one from ebay.  But I still wonder about making one.

tarijo wrote on Jun 16^th, 2010 at 12:37pm:

Awesome success rate, Chad!   :)  5 minutes!  Oh, to have him not hurting that fast!!  I have a friend who was an engineer in the army.  He is really good at fixing mechanical things.  He says he can make us a regulator that will work for this.  Just show him the picture he says and he can do it.  Was kind of wondering if that was -idk- ok?  Personally I would rather have one from ebay.  But I still wonder about making one.

From what others say on here, you can use the regulator that comes on a welders tank because the higher flow rate, the better.  15LPM may work for me, but it may not work for him or anybody else.
The ones on Ebay that go from 0-15LPM are pretty cheap in price.  The ones that go 15LPM and higher can get a little pricey.  Get your engineer buddy to toy around with the regulator you already have on those tanks.  You should be able to adapt the hose that goes to the mask with adapters you can buy online or medical supply stores. 

Best of luck!

IMO if you're getting a hi flow regulator, you should get one that will go up to at least 25 LPM - some of the power users on here (and power users in training, like me) will hit that O2 at more like 40 LPM for a short while, hyperventilating.

I need a conversion.  psi to lpm.  I found one.  1 psi = .3975.  Not sure if that correct, though.  I came out with 50 psi=20 lpm , therefore 150 psi = 60 lpm.  Does anyone know if that sounds right? 

I looked and found nothing that converts psi to lpm.  One has to do with pressure and the other has to do with flow rate.

The gauge on the regulator should have PSI on it which is how much "pressure" is left in the tank.  I look at it as a "gas gauge". Your LPM is the "flow" rate or how fast that O2 is leaving the tank.  There is no conversion for this because they deal with two different conversions.

1 liter per minute is equal to 0.264 gallons per minute

That is your metric to english conversion.

I looked at our gauges today and funny enough in smaller red print it said lpm.  so the torch o2 will work and the regulator, i only have one hesitation in using it so much.  If any, ANY moisture gets into that iron tank it will rust and Im not to keen on inhaling rust particles into my lungs.  emergency use I think

If I understand correctly from my old scuba days......

The only threat of rust is drawing your tank down to zero. As long as you have even 50 pounds of pressure reading on the gauge.......you have positive pressure and nothing can get into the tank.

Joe

I wonder if we could have Linweld take a look inside to make sure that its clear of rust.  Or ask for new tanks.  IDK.  It's hard to figure some of this stuff out and I feel like idiot asking so many questions.  But then if I don't ask-I will never know and then I really will look like an idiot!!

Still think we should've grabbed the tanks yesterday.  2 of them.  Even if we didn't have the regulator for it.  Just in case.

I see my hubby was posting at 5 this morning.  Gives me an idea how much sleep he's had.  He was having tingles on his left side last night.  Please, God, no!!  He always has them on the right.  Tingles on both sides.  At the same time.

I was wondering if it isn't trying to run away from the meds.  Although if the beast was as smart as it thinks it is, it would know that the meds will work on both sides! 

Tarijo,

Never feel like an idiot for asking a question.  We all did the same when we first found this site.  I'd rather ask then sit in pain. 

Now, I use the medical tanks, but a ton on here use the welder tanks and they have had no issues with the dirt in the interior escaping.  I would think it's almost impossible for a spec of rust or dirt to proceed through the fittings in the regulator.

I would get the tanks and start using them as soon as
he has an onset or shadow headache.  The sooner you jump on that tank, the sooner you abort.  If it doesn't work right away, keep on trying maybe every 10 minutes and continue ask questions.  Mr. Batch seems to be the master on here and he would be a great person to ask questions.  If it does work right the first time, stay on it for an addition 5 or so minutes after the pain is gone to be sure you killed the hit.

Best of luck!

Chad