About 2 years ago I finaly was diagnosed with CH by a docture. She gave me amitriptyline. And woe baby. It worked. She said to take it for a month. but i took it for 2 weeks. never had a CH again. So I was talking to a lady online about it and shes like " man you oughda go on CH.com and tell them peeps about it so they can get cured too ! " I did.  I came on this site and bragged to you all about it.  And your guys reply to my bragging about the " cure " was that it would come back some day. Well YOU WERE RIGHT.  I sure was hopeing that you were wrong but you were right ooo.   i didn't have them for yeah like 2 years + and then i got one like every 3 months. no biggie cause amatriptilyne killed it every time withen 30 min. but here in the last 2 weeks I have been geting them every single day.  It used to be I would just take one of those pills and i would be knocked the F out. for a good 14 hours. and i wouldn't have any headache's but now that i been poping these pills like candy. sometimes 4 a day they don't seem to be as powerful as they once were at all. They still work but not nearly as well and not every time. thats my story I hate to say you told me so but you did.

Hi Dustin,
No "I told you so's here" none of us take delight in someone elses pain. We just have a lot of experience dealing with this between us!

Amitriptalyne is used as a preventative not an abortive which will explain why it's not really working on individual attacks. They won't be killed by it, can't be killed by it as it takes vaso constriction or the attack ending for you to become pain free which leads me to another point.

It sounds like your actual attacks may be or were quite short. (Using the amitriptalyne theory.) This means it could possibly be another headache from within the same group as CH (TACS' or Trigeminal Autonomic Cephalalgia's)

Paroxysmal Hemicrania is defined as being different from CH in two things really, one is length of attacks and the second is responsiveness to a drug called Indometacin. (In the UK it's Indomethacin)

This is only an NSAID so a very inexpensive drug and therefore well worth a try. It's also very fast acting so if it's not blocking about 90% of attacks within a couple of weeks - it won't. It's absolutely 100% something I would try if I was you  but be warned, it is harsh on your stomach so you might need something to protect your stomach with it.

This is a preventative measure. Even if it works you will still possibly have break through hits. For those, the best thing I can recommend is oxygen. It's just incredible! Also triptans, the best ones for CH are EITHER Imitrex subcutaneous injections OR Zomig nasal sprays. NOT Imitrex nasal spray!!

Fantastic home remedies I really recommend are strong coffee and energy drinks such as red bull. Caffeine is a good vaso constrictor and if used early enough in an attack can knock it completely out.

I hope this helps! Stick around, we'll help you get a handle on all this

Helen

By the way - with O2 at 15LPM I can abort an attack in 5-7 minutes.. beats the heck out of suffering thirty minutes of hell doesn't it?!! :)

the first thing the docture did was give me ox2. she gave me some it didn't work, then she turned it up, didn't work, turned it way wayyy up shes like this is as much as i can posably give you lets see if that works... nope it didn't do anything. so she perscribed me amatriptiline.  amatriptaline is a triptalien med like you said. and it does abort them and you saying that that may mean that there not CH is the first bit of info i've learnd that they might not be.  so far everything i've read about CH fits the bill to my headaches 1000000%  such as i'll wake up from them hence the " alarm headaches "   and they are right behind my left eye. and that the pain is so bad that when i first started geting a cluster of them every day for like 3 weeks straght  and lost my job and everything i was thinking of suiside hence " suiside headaches " as they were called when they first discoverd. if they are a difernt headach i sure would like to know. i'm a welder and i have a huge bottle of ox2. for my torches. and i even tried breathing that its pure ox2. i breathed the hell out of it lots of it and nothing but it straght out of the bottle thats as tall .. well almost as tall as i am and ox2 dose nothing. the only thing that helps besides amatriptaline is hard exersise and .... i know that this is crazy but orgasim.

my dumb ex gf she was a nurse valivictorian of her hs. and 4.0 masters degree nurse and she's one of the top nurses in the country. i trusted her totaly and she told me " oh eat chocolate that cures headaches " ........ she told me to Drink alcohhal that can cure them too....  BOY WAS SHE WRONG she was makeing them WAY worse omfg.  those Bring on headaches she caused me so much pain besides that. i think maybe she knew what she was doing....  :-?

the caffine in chocolate actuly dose help regular headahes but not clusters it brings them on and alcohal sure as F brings them on. I can't even dream of drinking cause any thing like even a sip of beer brings it on so bad my amatriptaline don't work. she also said that dehidration makes up 75% of headahes. but drinking water does nothing for me. I also love when people tell me just to deal with the pain like they do, and then i tell them that its the worst pain known to medical science and even medical professionals are suprised to hear that. my dads best friend said " well how about if someone stuck you in the eye with a hot sodering iron "  i told him that's EXACTLY what it feels like. only right behind the eye. They even asked wemon who had babys that had CH they said CH is much much worse than having a baby. Thats suposed to be the 2nd most worst pain known to medical science. A paramedic told me that he would have thought huge body burns would have been the worst. and i kind of thought about that one... i would imagion that probably would be worse if it was like half the body or beter. and it was bad burns... that would be about the only thing that i could imagion being worse pain.

Dustin,

Do a bit more research - Amitriptyline is not in any way related to the Triptan class of drugs - completely different in both function and purpose.

As Helen said, one is used to help prevent the attacks from coming and the other is to kill an attack that does happen.

With regards to O2: Are you breathing it 100% straight without any room air getting in with each breath? I also use welding O2, but with an airtight mask and a large bag to insure that I'm getting 100%.

IF (repeat IF) I jump on the O2 at the very first hint of a CH, I can kill virtually all of them in 3-6 minutes by hyper-ventilating on 100% O2. I breathe as fast and as deep as I can, standing up straight.

Marc

Dustin I'm sorry but the stuff you are saying is all wrong and I'm not going to let others read it without reading some accurate information too.

Amitriptyline is NOT a triptan. It is a tri-cyclic anti depressant commonly used in migraine prevention. It's also called Elavil. You may like to google it for yourself if you don't believe me.

Somebody may well be a nurse valedictorian and "one of the top nurses in the country" but that doesn't mean they know everything about every disease and if she told you chocolate or alcohol would cure cluster headaches I wouldn't let her nurse a rubiks cube. Frankly, I have never heard such a load of old guff in my life.

We have a responsibility here, not just to you, but to the many others who read and don't post - all looking for help. We will call out misinformation every time we see it so someone else does not suffer.

Caffeine is a vaso constrictor. That's why we recommend coffee and energy drinks. It does actually help with the pain of CH.

The pain of CH has been compared with childbirth (no comparison, trust me. I've done both!) and also with surgery without anaesthesia. THAT comparison comes from Professor Goadsby who is one of the leading researchers in CH.

Now, if you actually read what I said, CH is one of a group of headaches known as TAC's. In all three TAC's the pain is equally horrific and the autonomic symptoms remain the same however the length of attack varies as does responsiveness to indometacin.

I suggested you try it as it's a no lose situation. You have everything to gain by trying it. If you don't want to try it thats fine - but someone else reading this may benefit from the advice so I will reiterate it.

Hoping you get some pain free time soon
Helen

yikes i wasen't saying you were wrong, if theres one thing i've learnd is you guys know what your talking about that's the hole point of this thread just read the title : )  I also said that my " dumb " ex gf was totaly freaking wrong. She was right about caffine helping to cure the headache's and chocolate dose have caffine in it however chocollite itself brings CH on. and so dose drinking. I honstly think she was trying to get me to suisiside. because at the time she was cheating on me.  Also the docture had me on pure ox2 mask that i don't " think " it let me breath room air. But like you said its used to prevent an attack. not so well at aborting them from what i've read and you have just stated. The reason i said amatriptline was a triptain was because the docture told me it was. I trust your right and i beleve you.  That doc must have been wrong with that one. I guess he thought because amatriptialine hast Trip* in it's name it must be the same.  On the net it clearly states that CH is the worst pain known to medical science. You said you have done both and there is no comparison what is worse?  I as well as any CH sufferer's ( not saying what i have is specificly CH ) will try anything at all to get them to stop.  I beleve i have the right to call what i have cluster headaches because they do come in clusters : ) and thats how cluster headaches were named.  It will be a wile before i can get to a doc again prolly wendsday to try and get more meds for it. i'll try and learn all i can from you guys to see what i should be talking to him about b4 i go.

also i should add that caffine dose not help my headaches at all. I've tried massive amounts of it before when i didn't know what i was geting. and it did nothing for me. also most headache medisin has caffine in it and they do nothing for it. i'm alergic to ib profen so i havent tried that one but i have tried all others with no success. amatriptalyne actuly aborts my headache and prevents it. it used to do it 100% thoroly both but now it dose it like 70% sucess of both. a little more succsessfull at aborting than preventing. if i take a hole S load like 4 pills then it will prevent them until it wears off. Also I'm sure that theres a very big possability that i do not have CH and have what you think i may have. I'm definitly not ruleing anything out and i'm not saying your wrong what so ever. i'm sorry you guys got that impression.

After reading this discussion, I can't believe how knowledgable you are Helen. Is everyone in GB as great as you? I want to know more about TAC's. Where can I read up on this?

Oh Dustin - I'm not doubting for one minute amitriptilyne has helped you, I'm only trying to help you more by suggesting other options. I'm not a doctor or a nurse, I'm just a sufferer who has tried a lot of stuff and read a lot and wants to help others.
At the end of the day, any meds we recommend should ALWAYS be discussed with your doctor as we do not know your medical history and if stuff is potentially harmful for you.

Ibuprofen won't help though - well it might help with shadows but it will NOT help with an attack.

I'm sorry I wasn't clear about the childbirth/ch issue. I'd give birth every day in preference to CH. Childbirth bloody HURTS - but it's productive pain, it's pain with a purpose. All CH does is make us want to die - there is no contest in my mind. CH is worse than anything.

I will help you all I can - I promise. My only wish in all of this isn't to be "right" - it's to see you pain free.  :)

Helen

Remission lover (What IS your name?! LOL)

I hate this disease. I can't tell you how I HATE it. I will do anything I can to help people and every person we get pain free is a victory over the beast - and I won't lose.
I have a child with CH as well as suffering myself. It is unbearable, it hurts worse than any CH ever can and I am driven, absolutely driven to fight this. I don't usually talk so personally but, sometimes I get a weak moment.

A FANTASTIC resource is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Join OUCH too please! Together we have a loud voice and we can make a difference!

I will help in any way I can, I will answer anything I can and if I can't - I'll go to people who can help. I have read and read and read til I'm blue in the face. I've been posting on this site for over five years and reading a little longer.

I've learned from experience and trust me, you will too!

Helen

welp about 10 min ago i got a rapid one it in full force right now. i took 2 amatriptaline hopefully it will go away soon : (   I know what you mean about it makes you want to die. i was literaly going to kill myself if i didn't find a fix for it back when i first started geting them every day about 3 years ago, if it had not been for amatriptaline i would be dead for sure. but now days its not working like it did when i first started taking it. omfg !  :o this hurts  :'(  my left eye really is lactating. and it feels like someones sticking a hot sodering iron in my left temple.  they said i'm going to have to go to a neroligist. is that the type of docture i need to see for this?

XoDustinXo wrote on Dec 5^th, 2009 at 5:50pm:

welp about 10 min ago i got a rapid one it in full force right now. i took 2 amatriptaline hopefully it will go away soon : (   I know what you mean about it makes you want to die. i was literaly going to kill myself if i didn't find a fix for it back when i first started geting them every day about 3 years ago, if it had not been for amatriptaline i would be dead for sure. but now days its not working like it did when i first started taking it. omfg !  :o this hurts  :'(  my left eye really is lactating. and it feels like someones sticking a hot sodering iron in my left temple.  they said i'm going to have to go to a neroligist. is that the type of docture i need to see for this?

  Nope.  You need to see a Neurologist.

          Potter

I have to say this...I just have to.  Potter, I am proud of you.  ;)

Dustin, All pertinent information about medications, treatments, how to educate yourself and there-by the Doctors who treat you is all right here for the asking.  Links are to the left.

I'm really happy to hear that your nurse/gf is an ex.   ::)

Linda

Dustin,

Did the O2 mask have a bag on it?? Did you get on the O2 as soon as the hit started? Did you hyperventalate the O2? What was the flow rate? These are important things for proper O2 use on CH.

Trying to help, Don

Linda_Howell wrote on Dec 5^th, 2009 at 6:36pm:

I have to say this...I just have to.  Potter, I am proud of you.  ;) Linda

Winter is coming to Montana. It can do things to a man's mind.......

Marc

whew just woke up and its gone : ) it must have took an hour for me to fall asleep. the ox2 thing i had at the doctures did not have a bag on it. but the ziplock bagy thing i used on my welding ox2 thing did : ) i taped the bag around the tank spout and poked a few holes in it and turned it on and breathed in the other side of the bag. i hyperventalate naturaly when i get these headaches. its almost like i'm panicing. not chooseing to panic just i'm terrified of the headache and i panic automaticly.

XoDustinXo wrote on Dec 5^th, 2009 at 5:50pm:

they said i'm going to have to go to a neroligist. is that the type of docture i need to see for this?

Yes, but I sure hope you can locate a headache specialist type of neurologist (very important), because plain old neurologists are all too often about as "helpful" as your ex gf when it comes to CH.  :o

Even a headache specialist probably won't know the most effective way to administer O2. It's essential IMO for you to carefully follow the guidelines in the oxygen info here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

If you start really doing O2 right and it's still not working every time, there are other very effective abortives that can be used as a last resort back up plan, imitrex being a widely used one that I personally rely on for a certain percentage of my hits. I think it's not as generally well regarded here as O2 due to it's potential side effects, high cost, people having been prescribed the wrong form, etc., but the injection (!) form will knock an attack right out for most people. You very well may know all that already, but I too am preaching to clusterheads new to the site who may be reading this [Edit: I realize now that LeLimey already said this. She really knows her stuff!  :))

BTW, your ex gf's alcohol prescription for you qualifies as aggravated assault, maybe even attempted murder in my book.  :o

XoDustinXo wrote on Dec 5^th, 2009 at 11:19pm:

whew just woke up and its gone : ) it must have took an hour for me to fall asleep. the ox2 thing i had at the doctures did not have a bag on it. but the ziplock bagy thing i used on my welding ox2 thing did : ) i taped the bag around the tank spout and poked a few holes in it and turned it on and breathed in the other side of the bag. i hyperventalate naturaly when i get these headaches. its almost like i'm panicing. not chooseing to panic just i'm terrified of the headache and i panic automaticly.

Are you sure you used the right tank?

           Potter

SuperIrish2005.