grateful for this sight. I am new so bare with me.. finally ppl who understand, reading some of these stories actually brought tears to my eyes. My CH started in november, i was actually hospitalized for 6 days and put in a drug induced coma. they thought i had spinal meningitis. i lost 20 lbs in 10 days ..some would last 15 min w/ only 30 min of relief... i ended up lying to get out of the hospital cuz i felt like a guinea pig. MRI's while in a cluster, by far way worse, being forced to have ur head caged in while listening to tones and sirens for 30 minutes, while i was choking on my own vomit... brings tears to my eyes just to think about it. on top of that i have regular migraines and usually i get both...completely debilitating me for 3 to 5 days. i dont know what to do, i have been allergic to all of the imitrex, maxalt, ect. i have had to take 2 medical leaves from school, and am scared to go back i hate to fail. what job will hire me? I try to live my PFD's to the fullest but then night falls and extreme anxiety sets in, like russian roulette, will it come? i have been accused by er doctors as a drug seeker, i had no idea ppl actually did that, however my regular doctor knows i am not, but considering most attacks occur in the middle of the night i am forced to deal with doctors that make me feel even worse over a pain that is so intense i at times feel like dying. u tell them that and they will just think u are crazy or its just in your head. i am grateful oxygen works during the day for the most part....i am a single mom and have a lot of guilt that my precious 5 yr old has to see me laid out for days at a time...i am essentially missing out on her life, which is my life. my doctor gives me a pain shot, steroids then percocets so i dont have to keep coming back...but what kind of life is that, to be drugged all the time? but during an attack i  feel no other choice. immediately following a CH i get a regular migraine then the cycle continues...for days...i like reading how positive some of u are, and pray i can get there at some point...but depression i feel is consuming me...hope just talking about it to ppl who understand can help

I don't quite know what to say, except I am so very sorry you are going through all of this. I think everyone on this site understands your fear, depression and anxiety. There are some standard replies to the issues you raise, and they are all good for all of that, but still....a drug induced coma? Who diagnosed your CHs, and is it a neurologist who has experience with them? You describe several abortives to which you are allergic but there are more, and it sounds to me as if you must find and attend as soon as possible a pain clinic who will work with your neuro.

As to the depression? Please keep in mind some "truths" which, will not depression specific nor necessarily depression "abortives," are nevertheless critical.

First, recognize this for what it is: a real depression triggered by real physiological conditions raising real fears for yourself and for your family. Real here meaning they are occasioned by the CH and are not a product of your overworked emotions or imagination.

Second, the depression is itself a killer if you let it run unchecked. It deserves its own time and attention. You can't just sit back and wait for a CH cure hoping that will end this cycle.

Third, find someone (a prescribing doctor) who understands the complexity of depression and disease. He/she can help.

Fourth, keep talking and writing! Even if it is repetitive. Depression does its worst work when we try to suppress it. Talking (writing) does effect pscyho-neuro change. It helps!

You are not alone and do not think you are. And for whatever comfort it affords, you are in my prayers. Blessings!

And get to a headache specialist. You have a lot going on, relying on a different ER doc each time you go in is a recipe for a lot of pain. CH requires a management program....many find good results using the following 2 pronged approach.

1: A preventative medication. A med you take daily while in cycle to reduce frequency and intensity of your attacks. Verapamil is a common first round prevent, I use lithium, topomax also has a loyal following.

Many like me use a 2 week prednisone taper as a transitional med as it takes about 10-14 days for most prevents to become effective. Prednisone will usually provide relief during that period.

2: A good abortive. Oxygen should always be your first line abort. Read the oxygen info link on the left as it must be used correctly. Keep an E-Tank by your bed for the night time hits. Sorry you have issues with the imitrex, when all else fails it'll usually save me.

You have a great deal of reading to do. Most doctors do not know about CH. It is incumbent on you to educate yourself and then work with your doc to plan your medical treatment. We'll help you every step of the way. Hang in there....31 year sufferer here, you get it under control you can rule it instead of the other way around.

Joe

Please take the time to read, read, then read some more here on this site.  You will find a lot of valuable experience youi can tap into and not have to experience yourself.  You will also find hope, and hope is the key that will deal with the depression long term.  The ER is the last place you need to be unless it is a matter of life and death.  You've alread experienced that.  The Drs there do not know about CH, so they will be trying to deal with your issues as something else.  They cannot comprehend our pain when they can't see something to cause it, hence they lable you as a drug-seeker and push you off.  Percocet is not effective for CH, and will actually cause more problems than it will cure. 

You've already found O2 works, so I would echo what Joe said.  Get another tank and put it by your bed so that you can kill the beast as soon as he wakes you.  When you have a means of dealing with the hit in the night it takes away the fear.  After you have dealt with it a few times and have learned that it works it should take away the anxiety.

Also, as Joe said, find a GOOD headache specialist and get started on a good preventative regimen.  Or, find one of the alternative therapies that works for you and get started on it ASAP.  Personally I have better results with Kudzu as a prevent than any of the scripts, but each of us is different.  You will probably have to experiment with several before you find what is best for you.  That is why it is important that you find a knowledgeable HA specialist.

Keep reading, and feel free to ask questions.  We have all been there, and know where you are coming from.  You now have a family behind you and are not alone.

Jerry

thank you all. i will def. keep reading and learning from what has helped you. at times i feel like my own doctor..sounds stupid, but what i dont understand is how ur clusters last a short period of time...i would compare it to later, pain for minutes to hours then gone then back again. my HA specialist thinks my clusters are triggering regular migraines or vice versa  and that is why i am not getting a break. the pain is literally non stop...i know when i am having a CH episode, when i want to stab myself in the face! but i dont go to the er until my vomiting starts because with regular migraines...in my case anyways if i dont get that under control when i get my next cluster i am literally exhausted from all the vomiting and i feel like it is worse...as far as my depression goes, you all are right talking and righting does help...my mom is so worried about me, when i pass out in pain her and my father feel there is no other option than to take me to the er.....do any of you suffer from both and are they on top of one another? i have a huge stack of all the medication tried on me...now i can go through that and compare it to what ppl on here have tried...although u are all an inspirational how do u get through not knowing if u can ever live a normal life. its crazy how one can be in soo much pain...clearly...and a doctor of all ppl makes u feel worse because i have to tell them what works for me.
again thank you all for your feedback :)

Hi Angela Lynn,

Unfortunately there have been others who have joined us here who have been through the sort of trials and tribulations you have endured, such as induced coma.

FORTUNATELY though, we've seen some people with the worst cases find actual relief. As you can probably imagine, this wasn't through any a-hole doctor (although I will echo the call for finding the best headache specialist around).

IMO it is critically important for you to read in it's entirety, and without prejudice, this recent Newsweek article that covers some of these people :

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

Then go to the clusterbusters.com message board:

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

And interact with some of them there.

There are also topics here on the subject, including one you'll find on the Medications, Treatments, Therapies board entitled "Time for the 75-80% to stand up and be counted":

Here's to you finding relief.

Hi Angela Lynn,

I second what bejeeber said. If you read the posts by Bonkers on this site and on Clusterbusters, I think you'll find a case quite similar to your own. We are finding our way out of this Hell and you may well be able to do the same. Please feel free to PM or email me if you have any questions that you're reluctant to post. I'm not an expert, but I can point you in the right direction for answers that I don't have.

Good luck,

Ron

How old are you Angela?

          Potter

My 3 abortives of choice are Oxygen, triptan (you are allergic) and Zyprexa.  If you havent tried any of these, you should!

Get to a specialist right away!!!

Keepr reading and posting here.

A non Triptan abortive is DHE, available in inhaler called Migranal or injectable as DHE-45. I use the injectable.

Also please read the "oxygen info" via the link below.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Pain meds are of little if any use for CH.

Good Luck, Don

Hi Angela Lynn.  To maybe answer one of your questions, this morning as I thought I awoke with a Kip 4-5 CH (kind of strange timing for me) only to have it NOT go away in an hour or so AND followed by some world class vomiting.  My stomach was so upset I couldn't get any medicine down it and I was quickly realizing that what I thought was an out-of-cycle CH was really a migraine.  I usually get 1 or 2 per year but nothing too bad.

Even more ironic given my previous post on another thread about the differences between the 2 headaches and my thought that I could always tell the difference.  I'll eat my words people :D

So I am fairly unclear what exactly that was??  Probably a migraine that pounded the same part of my head as the clusters because I am not in my cycle right now, but I have been having stray CH shadows.  So I busted with a light psilocybe dose today (take that!  BOOM >:() just in case my cycle was coming back. 

Anywho, my afternoon went better than my morning, after I pulled myself off my floor around 1:30pm, but I have a new found respect and sympathy for the migrainers of the world.  The head pain isn't as sharp and wrenching, but the whole laying on the floor hurling thing sucks extra.

I know other people have a combo pack of head pain (migraines and CH) and there is a thread somewhere around here with it. Soooooo, read what you can and eventually you will figure out your routine.  Don't give up yet, sounds like you are still new to this.  Hang in there! 

>:( mean guy to ward off evil head spirits!

--Shaggy

To follow a little on what Shaggy said.....my impression is your young. (A good thing, I'm just jealous cuz I'm an old fart!) So my advice is move slowly. In the early 80's I tried a lot of meds and when they didn't work immediately, the first time, I discarded them. Running through them quickly runs the risk of missing your silver bullet.

I can't help you at all on the migrains as I have no experience. As I said in the earlier post, for the CH, what works best for me is lithium as a prevent, and oxygen as an abortive. While nothing works all the time, 02 has only failed me once this cycle. To echo the others, please read the oxygen info link. Used correctly it's a life saver.

Hang in there, the double wammy of migrain/CH is a bear to handle. You sound like a young lady with the right attitude to handle it. [smiley=hug.gif]

Joe

yes, i am just now 28...i have been on depakote and have went through many of the things you have suggested and have highlighted the ones already used....O2 works for me as well if i get to it in time....not a pfd today....er visit was 14 hours, i was dehydrated from vomiting and had my attack on my way home from school (45 min) away...i pulled over got out passenger door and fainted in pain...its getting hard to explain the bruising on my face ;) it sounds like i have to do my own research and advocate from ppl on here and try their meds, suggest them to my doctor. i love my reg. doctor and i know he will try anything...lithium,omg heck no, that made me soo soo sick...my doctor is stumped and my neuro, well he is all i can get at this point. my fam doctor gave me his hime phone if i have problems and i gave him this sight because i told him i found it...and i dont have all the meds i have tried...thank you all again and i will check out those other links...cuz by the sounds of it i get a reg. migraine then the cluster follows but between the fainting and vomiting i cant figure out what to do... :'(......but am soooo happy to find u ppl! :D...its kinda like that MJ song..."you are not alone i am here w/ u tho ur far away i am here to stay" ;D....hope pfd for all!