Hi I just registered to post on this board. I have read a lot of things on the board the past few years but never posted anything. I am 23 and I have had chronic CH for 9 years now. To clarify that is EVERYDAY with the exception of a lucky PFD here and there once or twice a month. I was originally diagnosed by my regular doctor at 14 who told me at the time he could do nothing about it. So for years I went on suffering with no relief. Later on seeing a different doc I talked to him about it and I tried Maxalt and Imitrex with no sucess. He then also told me there wasn't really anything else he could do. None of them ever refered me to anyone else or did anything to help. When I was 19...well long story short big fight, yes stupid I know wasn't my idea and I did not intentionally get involved, but never the less I ended up with my jaw wired shut for 2 months and several big bottles of hydrocodone syrup. When I found out that I was going to have my jaw wired shut for 2 months my first thought was I get really grumpy when I don't eat and if I get a CH along with that I don't know what I am going to do. Well the time went by and I didnt get one CH the whole two months. The longest time I have gone PF sense before they started. I wasn't sure why untill after it was all done and I wasn't taking the pain meds anymore. Then they came back just as they always were and it occured to me the only difference aside from being starved was that I was taking the pain meds. At that point I was pretty much against wasting more time and money on Dr's who all told me the same thing; they can't do anything. Personally I think they didn't belive me but you could ask anyone who knows me the situation is very real. Being that I had access to these types of pills from not so legal sources I went ahead and continued taking them for 3 years with almost zero CH. When I did have one the pain was nominally less. So much less compared to the usual it didn't even phase me. If there is any question I was NOT taking those pills before my jaw was boken. I noticed that if I took the same amount at around the same time everday I had absolutely no CH's. If I took more or less I found that I would usually end up with a CH bad enough to keep me from working or doing whatever I was doing.  I did this for three years with practially no pain. I wasn't a zombie, I had a good job that I went to everyday, I had friends that I saw everyday and was not a crazy drug fein. I did know that if I didn't take the pills I would have headaches however. Unfortunatly combined with the cost and withdrawl when they were not available I couldn't handle that situation anymore. So I have stopped taking them over 6 months ago. The CH came back just like before. I have quit my job, I don't hang out with any of my friends anymore or do much of anything because I am in unrelentless pain everyday. Mainly I am posting this because I see so much negativity tward pain meds on these boards and I don't understand it because I got complete and total relief from them legal or not. I understand that what works for one doesn't necessarly work for another. I also belive that the consistancy of the dosage and timing were a large part of the relief I got from them. They wouldn't abort them but after 2 or 3 days of a steady dose the CH disappeared. I am currently seeing yet another doc who has done nothing and can't even seem to get a referal to a neurologist for me. So for now its 4 or 5, 2-3 hour long blasting CH for me. Thanks for reading my really long post. Any replies are welcome.

That definately sounds weird.  I tried those pills and they are bad news for me.

Consider yourself lucky.  I think the failure rate on pain meds is about 98 to 99%.

Have you ever tried Oxygen?

B$

Haha I would consider myself lucky if a Dr would actually prescribe the pills to me or anything to try for that matter. At this point being off of the pills I am open to trying everything else before going back to them if I could find a doc willing to help.  

There are three things you need to be aware of when using narcotic for any kind of pain long term:

1- Addiction
2- Psychosomatic syndrome
3- Rebound pain ( in this case, rebound headaches )

I wish you well and hope you will find a good doctor who is willing to work with you to try the various treatments that have been shown to help CH, like oxygen, verapamil and ergotamines.... to name a very few.

Stay away from narcotic if you possible can, try every thing else first.

What is psychosomatic syndrome?  Is that where your brain suffers irreversible damage due to the drugs?  The docs said my ex suffered from this, they say the drugs altered her brain.

Chronic, i understand finding a doctor who gives a shit is difficult.  There are many different medications for prevention of CH and to abort a CH.  Well, actually, there are no meds FOR CH, they are meds for other things which happen to give relief to some CH sufferers.  You don't necessarily have to get a referral to a neuro, but it is likely a neuro will have knowledge.  I do not use my neuro, my GP handles everything.  

Like I said, there are many drugs that show positive effects in some people.  You should research them and discuss them with your GP.  Maybe one of them would work for you.

In the meantime, get Oxygen.  Pure O2 at 15lpm+ is a common abortive and is met with nearly 75% sucess.  It is cheap and has no negative side effects except for a dry mouth when using it.

Maintain a regular sleep schedule.  Dont take naps.  Dont drink alcohol.  

PF wishes to you
B$

Yell at you? Heavens no, a man who has to yell to get his point accross, probably has no point worth getting accross.

The path you've chosen to deal with CH is a path that has a high percentage of long term failure, long term damage, and is chock full of potentially devastating endings. While I won't yell at you, I'd strongly encourage you to explore some of the high percentage options that many on the board have found success with. It's possible none of them will work. The odds are many of them will. Starting with oxygen, and perhaps a decent preventative, lithium verapamil etc. We'll help all we can with educating you on what's available. Final decision is all yours.

Joe

Hell, I am not going to yell at you, if it worked for you.  Just be aware of the long term/permanent damage that you could end up with.

VERY few have had long term success with pain killers.  I am glad you did.  I am also glad you are off them, but sorry you are back in pain.

Next time you go to the doctor's office, go equipped with information.  Most of us have found that WE need to train the doctors on this.  They have too many illnesses and injuries to know everything about every illness.  This is a very rare condition, so most likely they are not aware of the proper treatment.  Be PRO-ACTIVE with your health care!

Also, as has been mentioned, PLEASE try oxygen as an abortive!  It is the only thing that has allowed most of us to maintain any sort of normalcy in our lives.

As a side note, please try to use paragraphs in your posts.  It was VERY difficult to read that post of yours.  It makes it a lot easier on us (especially us old farts, LOL) to read, if you break it up into paragrphs.

Thanks!

Good luck in your battle with the beast!

Chuck

You're not the only one that pain medication has given relief to, but if you can, get some oxygen. That would help you a hell of a lot.

However...If pain medicine is the route you choose to travel, please, get in with a pain management doctor.

You need someone who can oversee your treatment with the pain medication, and you need to be 100% honest with said doctor about it. If you have to take any more than you normally would, or your body winds up needing more to deal with the pain, your doctor needs to know. Doing it any other way is a surefire road to addiction.

How do I know this? I was in pain management from 14-21. Pain medicine long term changes quite a few things in the body, and you need to know all about said things. They can also keep watch to make sure you don't become addicted.

It can also randomly STOP working on you, after long term use. It effects a lot of things.

Your GP might be willing to prescribe it, but like I said, even if your GP is willing to do it, you need to make sure you get in with pain management.

Good luck to you, no matter what route you choose. Like I said, the oxygen, 15lpm with a non-rebreather mask is something that could keep you from having to turn to the meds. It'll make your liver a hell of a lot happier in the end.

Mystina

I lost count, but I went through 20-30 doctors, before I found one who would work with me. It makes all the difference in the world. If your current MD is not aggressively trying to treat your CH, and in fact can't even get a CH sufferer a referral to a neurologist, that is not a good situation. CH is an orphan disease, not all MD's understand it, or frankly, sympathize with people who have it. When you find one who understands and cares, it is like a new beginning. Have confidence in yourself, a good doctor's visit is give and take, planning and questioning, not just listening to someone talk at you.

Managing individual headaches and trying to stop episodes are two different things, a lot of courses of treatment seem to confuse them.

What Ann said, narcotics are not probably the best long term plan, but
a long time ago, one neurologist tried to balance the potential effects of headaches versus negative effects of some drugs, and concluded sometimes prescriptions far in advance of common practice were sometimes indicated. If you respond to pain killers, you have a real low percentage CH, most don't. I went to near OD levels on a number of them, to be honest, most, if not all of them over the years out of desperation, nothing worked, IV or otherwise.

Some people are lucky, standard approaches bring clusters and episodes to a manageable level.

For us 2%'s, leave no stone uncovered.
Read every last thread on this site, write down every drug, non drug, everything, and get pissed at your cluster.
O2, hot or cold face cloths, packs and showers, the cornucopia of new drugs, can of pepsi, Red Bull, schrooms, etc, etc: EVERYTHING! The only things that have worked for me consistently are hot showers, almost 100%. Of course for some people, they are triggers, you have to keep trying things until something dials in. Take the list in to your next doctor's appointment, and get aggressive, in a nice way.......

I think CH treatment, esp for the marginal ones that don't respond to conventional treatments, is half science, and half luck and persistence.
My personal experience is that treatments for individual headaches will either work or not work in short order. A Relpax will either stop it, or not; Hot showers abate or they don't; a can of Pepsi chugged either helps or it doesn't help, but find a doctor who will get you a new script as soon as an old one shows no effect. O2 push is one headache helper that does buck this trend, you'll read that in an episode, sometimes it helps, sometimes not, even from one headache to another. Mixing drugs is usually a no-no, but, f'instance, sucking O2 in a hot shower while waiting for a 1/4 Zomig to kick in, might actually work, you never know until you try it.

Christ, clusters at 14 years old, I can't imagine that. I hope something I've written might help a little, even if it doesn't, don't ever give up.

Chris

Pain SUCKS!

In your circumstances I may have done the same thing...

HOWEVER, now you must look forward to the rest of your life.

You can choose to self medicate and self destruct ...

or

...look for support here with new approaches to dealing with Cluster Headaches that will allow to to live an enriched and fullfilled life....YOUR choice.

Welcome to the family

Paul

I can not read that post. It needs some breaks in it… I have a hard time reading endless paragraphs.

Pain killers are a bad avenue for CH. They do not work well at all as you build up a tolerance to them. It is a recipe for disaster in the making. Give the oxygen a try at the recommended 15+ LPM and proper NR mask.

Best, Roland. ;)

This is me....NOT yelling at you.  :)

Narcotics are NOT..repeat...NOT,  a preventative against Cluster headaches.  Lithium, Verapamil, Topomax, Caffergot, and a whole lot of others.. are.

Read the links to the left that list what preventatives and abortives are used and print it out and take it to your Dr.

You've found a place where people understand your pain!

I don't know what traditional meds and methods you've tried, but you've found the right place.  There ARE more alternatives!  Are you seeing a neuro now?

Texas is a big state, and I don't know where you're located, but here's a list of sufferer-recommended neuros, state-by-state: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There is a lot to learn on this site - read, read, read, and read some more.  My husband is the sufferer.  He's - so far - med resistant.  He also used pain killers (under the supervision of a pain management doctor) for a long time.  He's also struggling with nothing right now - but the pain meds weren't the answer either.  Apart from all the side effects, for him, they did NOT stop the pain from coming.

But excluding the narcotics, he's tried 33 meds now.  He hasn't found something that's worked yet.  But there are still more to try.  He's working with a neuro at a headache center now, and he's got hope again.

There are a lot of things you can try on your own while you wait for an appointment to see a doc.  Melatonin, magnesium, caffeine, taurine...  have you had blood work done recently?  Had your testosterone levels checked?  Had your pituitary functions checked? There are several active threads here discussing the research and these related issues.

Knowledge will be your friend and your weapon!

Laurie

wrote on Dec 13^th, 2008 at 2:05am:

1- Addiction 2- Psychosomatic syndrome 3- Rebound pain ( in this case, rebound headaches )

Psychosomatic syndrome? I've never seen the words psychosomatic and CH used together. Please explain.

chronic, I'm not yelling either, but it's rare that narcotics help CH sufferers with the pain of an attack.

Keep reading here, you'll see that we've done a lot of our own research and hopefully you'll find a better treatment.

From what you've posted the first thing you need is a decent Doctor. Most GP's and many Neurologists don't understand CH, and telling you there is nothing else they can do leaves much to be desired.

It's up to you to make sure you get the proper treatment. Have you taken the 'Cluster Quiz' on the left of this screen? It can help you decide if you have CH. For most of us here, narcotics will not stop a CH hit, in fact they will usually cause one when they start to ware off.

I'm not trying to be mean or anything I just really hope you don't have CH.  Good Luck, Don

Chronic,
Use this link that Gary's Girl posted, to find a doc in your area.

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

The reason narcotics are frowned upon so much is because they can be triggers for many people and they very rarely work to kill CH pain. Because of the nature of the beast, they usually don't work for most people. Then there is the fact, as you know, of becoming dependent on them, your body develops a dependency to them, and when you stop, your body goes into withdrawal.

Oxygen works well for most people, and is fairly easy to get. It's a great abortive. If your current doc isn't doing anything to help, because of lack of knowledge, read up  here, and print off the info you need. Take it to him/her.


If you've been prescribed Imitrex in the past, see if you can get the nasal spray, or the stat-dose injections. Maxalt tablets are designed to take a long time to start working. Imitrex pills take too long to abort a headache. Zomig nasal spray works well too.

You can always call another doctor's office, and ask, before you make an appointment, if the doc has any experience with CH. Or ask for a referral to a doc who does, then get in to see a neuro. Again, try to get in to one who specializes in headaches. With a little background work on your own, you can hopefully find one in your area, and have your doc refer you.

In the meantime, energy drinks, like Redbull, or Rockstar have taurine and caffeine in them, and will stop shadows, or knock back a hit. Melatonin will help you sleep at night, so you don't get woken up by the beast, allowing you to get some rest.


If you hear about it, do a search on this board, chances are it's already been discussed, and you can find info on it. Or post again, and ask questions.

I will agree with Chuck, and ask you to please break your posts into paragraphs. We aren't being the grammar police, but it's much easier to read several paragraphs.