My husband Ben has not got relief for more than 7 consecutive days from his CH. His job is in jeopardy b/c his is exhausted after the middle of the night agonizing attack. Last night he got one of the worst ever, he was screaming/crying and hitting his head on the wall, also contemplates suicide .This hurts me and our Gran daughter that we have raised since birth-she is 10. He has just about exhausted all resources :'( :'( and I am scared. Is his behavior normal? I once called 911 but by the time they got here the CH was gone. HELP! :'(

We really do understand what both you and your husband are going through. But, to help, we need a bit more info: has he been diagnosed with CHs? Is he seeing a headache specialist who knows CHs? What is he taking for an abortive and preventative? That kind of stuff. We're not doctors, but we have some extensive collective experience dealing with this sort of thing. This is a good place to be if you need support and intervening advice. Let us know what's going on with him, OK? Blessings. lance

Yes he has been diagnosed. Is on lithium which helped for a while. Imatrex used to knock it out but has been ineffective for past 2 weeks. He went to a chiropractor and was pain free for a week and that is the longest pain free he has been in years. Often times he suffers 3 or 4 a day, one of which is a horrible (suicidal) one.Someone even suggested drinking vinegar daily and it worked for a while.
I think I have him convinced to see a neurologist. He feels it is all hopeless and a wast of time. The CH surly degrade his quality of life but is also affecting ours tremendously. Thank you for any suggestions. Also, he suffered migraines from age 20 to age 50, then the CH started.

Yes he has been diagnosed. Is on lithium which helped for a while. Imatrex used to knock it out but has been ineffective for past 2 weeks. He went to a chiropractor and was pain free for a week and that is the longest pain free he has been in years. Often times he suffers 3 or 4 a day, one of which is a horrible (suicidal) one.Someone even suggested drinking vinegar daily and it worked for a while.
I think I have him convinced to see a neurologist. He feels it is all hopeless and a wast of time. The CH surly degrade his quality of life but is also affecting ours tremendously. Thank you for any suggestions. Also, he suffered migraines from age 20 to age 50, then the CH started.ps- he is on OX but that also is no longer working.

Welcome to the board, a couple of suggestions:

Go to the medications section of this board and read the post "123 pain free days and I think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

Talk to your doc about adding Verapamil to the lithium. This combination has helped some when either by itelf became ineffective.

Thanks for doing the footwork for my CH brother.

Joe

camperlynne wrote on Nov 14^th, 2011 at 8:45am:

Yes he has been diagnosed. Is on lithium which helped for a while. Imatrex used to knock it out but has been ineffective for past 2 weeks. He went to a chiropractor and was pain free for a week and that is the longest pain free he has been in years. Often times he suffers 3 or 4 a day, one of which is a horrible (suicidal) one.Someone even suggested drinking vinegar daily and it worked for a while. I think I have him convinced to see a neurologist. He feels it is all hopeless and a wast of time. The CH surly degrade his quality of life but is also affecting ours tremendously. Thank you for any suggestions. Also, he suffered migraines from age 20 to age 50, then the CH started.ps- he is on OX but that also is no longer working.

A headache specialist is very important to rule out a more sinister cause for the headaches.

       Potter

Y'know Potter makes a pretty important point. When we suffer from an affliction like CH, there is a tendency to accept every head pain as a part of CH. As radically as the pain is changing, and the fact the normal meds are having no effect on the CH, both say it's time for a new work up with a headache specialist neurologist.

It will be a chance to confirm there is nothing more sisnister at work, and give him a chance to change up the treatment system. Clearly the one he is using now has stopped being effective. Not at all unusual for ch as its nature is to constantly morph. What works this cycle, stops working for the next cycle. :'(

Joe

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
=============
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Hi all. I'm the CH'er who's life is miserable and can make the family's life miserable too.

Definitely been suffering CH since 2002, maybe before. I am a chronic sufferer, it is a rare week when I will be pain free. Like Lynn said I've have migraines all my life, so I know the difference. At least I could sleep during a migraine. Have had MRI in the past, maybe 20 years ago, for the migraines. They didn't find anything. (Now I'll let Lynn take that statement for all it's worth! ;) )

Am on Verapimil for the past 4-5 years and going to go up from 240mg to 480 in the next week. Now I got to let the GP know.

So next step I see is to schedule with a neurologist. My issue there is that I have sleep apnea, and years ago when I tried to hook up with a neurologist I got sent home with a C-PAP machine. I can't use it however, no matter how long I try, I can't sleep with the mask on my face. So I don't want to see another neurologist and have them say that I have to do the C-PAP before anything else.

I'm off to look up the 123 days...

Thank y'all for being here and much love and thanks to my wife for #1 - sticking with me and #2 - getting involved.  :-* <-- kisses to you!

Thank you for the input. I do love him and can't stand to see this suffering. I would imagine the pain is as intense as childbirth-any lady's out there who have ch and have givin birth? If so is the pain comparable?
I do know one thing that may help-he needs to quit smoking. I have read that.
Also, when he was 18 he suffered sever head trauma in a motorcycle accident. He was in a coma for 3 days. I often wounder if there is a connection.

Many on the board have had head trauma preceding the onset of their CH, many, myself included, have not. As to the CPAP Machine. Many here have had sleep studies done, were told they had sleep apnea, and were given the CPAP machine. Did wonders for their sleep apnea, did nothing for their CH. As to smoking, many have quit and haven't seen any difference in their CH. I have never smoked...still get CH. Always a good idea to quit, but do not anticipate any CH relief as a result of quitting.

Hopefully the increase in verapamil dose will help, you're on a very low dose now, some go 960 mg and above before they find relief. And keep in mind the idea of adding lithium to the verapamil as another alternative. Don't let the name lithium scare you, I pulled off a 30 year career as a cop while taking lithium, we use it at pretty low doses, if I didn't tell you I was on it you'd never know.

Good luck, high cycles suck.

Joe

camperlynne wrote on Nov 14^th, 2011 at 7:56am:

My husband Ben has not got relief for more than 7 consecutive days from his CH. His job is in jeopardy b/c his is exhausted after the middle of the night agonizing attack. Last night he got one of the worst ever, he was screaming/crying and hitting his head on the wall, also contemplates suicide .This hurts me and our Gran daughter that we have raised since birth-she is 10. He has just about exhausted all resources :'( :'( and I am scared. Is his behavior normal? I once called 911 but by the time they got here the CH was gone. HELP! :'(

That is a living nightmare I am also living in high cycle, it sucks and your family NEEDS to be supportive of one another, as EVERYBODY is afflicted, specifically of course the one being TORTURED by the DRAGON!

My job is also in jeapodry-see thread titled "Missing Work", so I relate.

I've concluded my CH's started, at age 11 which was 32 yrs ago, from head trauma. 

Smoking can certainly be a trigger for an attack, but many have never smoked in their lives and get CH's.  I certainly never smoked before my 1st cycle at age 11.

Like Joe said head trauma and smoking may/not be related, just speculation on individual basis.

Screaming, crying, banging head, suicidal thoughts, etc all are perfectly "normal" or typical of intense CH attacks/cycles.

CPAP machine is not relevant to treatment of CH's as low o2 levels have nothing to do with attacks.  The co2 levels, however, have everything to do with attacks and that is why one must hyperventilate 02 to overpower the co2 buildup, which causes inflammation in the trigeminal nerve, thus creating attack/pain.

Seeing a neurologist/headache specialist to rule out some other disorder would be wise.  Also to really review the meds and dosages would be of great importance. 

Sincerely all the best...

Gregg in Las Vegas

I can't add much to what has already been recommended above.  You mentioned he is on OX, but at what level and what type of mask?  That makes a world of difference.  I too am chronic, and I got the idea O2 didn't work for me, but I was using only 15 lpm through a regular non-rebreather mask.  After several years without it I was convinced to try it again at at least 25 lpm, and to purchase the O2ptimask (available from the CH.com store). WOW what a difference!  I went from 15 to 20 minute partial aborts to 5-8 minutes to abort.  I strongly suggest a higher flow rate if it is less than 25 lpm.  I just got a new script from my new Neuro for 40lpm, and am looking forward to trying the higher rate.

Jerry