For the last 5 years, my husband has suffered daily from debilitating CH.  He lost his job, is permanently disabled and miserable most of the time. At one time he had a brilliant career in the computer industry, at the top his field.  Now he feels his life has no purpose and is clinically depressed. I finally got him to see a therapist once a week.  His CH cycle several times a day lasting weeks at a time.  His Nero has him on Methadone (titrating off), Ketamine and Butabitol to control (mask) the pain.  Nothing really seems to help.

I do my best to keep him in a quiet environment, which is difficult at best with a Bipolar dtr.  At one time they were inseparable, going everywhere together. Now he spends 70% of his time in bed medicated, his head covered with a pillow.  She resents this tremendously.  I try to keep up with the house, child and small business I started 6 years ago, which is difficult at best.

It's always obvious when an attack occurs.  He covers his left eye hoping to reduce the pain, or goes up stairs to roll on the floor trying  not wake me up in the middle of the night.  This pain is far worse than his regular migraines, which he has had his whole life.   I often fail in trying to keep everything under control, and admit I can get frustrated and resentful by his condition.  Everything lands on my shoulders, leaving me exhausted, and unfortunately less compassionate.  Although I suffer from extreme migraines myself, I cannot imagine his pain.  

I wish there was something more I could do. I ask if there is anything I can get him, I rub his head and shoulders. I can't be sure, but his pain could be linked to two distinct head traumas from his youth.  He has seen 5 neuros. His current Neurologist of 3 years has tried everything he knows to help with minimal success.  The Med-tronic occipital implant only made matters worse.  His attitude is often angry, resentful, short and has little patience for our daughter.  The intimacy of our relationship is almost nonexistent.  It's difficult for a person to want intimacy with another who is so dependent and in pain most of the time.  Having failed "Mind reading 101" I never know when the time is right.  When it is possible I don't have the energy or desire.

I truly love my husband.  I want to share our golden years together traveling and enjoying our marriage.  I remain optimistic whether he can or not.
Is there any positive prognosis for this condition?  Will he/we have to live the rest of our life this way?  I can only pray and remain committed to finding a solution to his CH.  Hopefully through the success of my business, we will have the means to fully investigate other options to this illness.

Mr Buster 46
Mrs. Buster 47
Daughter Buster 14

Your last name COULD just hold an answer for you.  I will send someone over here to talk to you about it.

In the mean-time..

Id like to suggest that the meds he is on right now may not be the best for helping him.  There are other things out there more reliable.  

Preventatives such as Verapamil, Caffergot, Lithium

Abortives such as pure oxygen, Imitrex and Zomig.

Hang in there Mrs. Buster.  Everyone here will do their best to help you.


Linda

Hi Mrs Buster. Bless you for supporting your husband, it has to be the hardest job in the world.

Linda's reference to your name was because of a treatment option you may not be aware of. Deciding to go this route is a serious decision, and much research and reading must be done first. Especially if he's clinically depressed. That may make this option unsafe.
Have a look at this site:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

What meds/treatments has he tried so far? There may be something new.

You have a lot on your plate... please remember to take care of yourself, too. We are here to help, and answer any questions you may have.

Best, nani

Thank you Nani.   ;)

Hi Mrs. Buster......welcome to the board.

I am married to a sufferer too.  
Please don'tgive up hope and try not to let him give up either.  There is hope....I promise.  My hubby was chronic for 15 years.  He's in remission now and has had two beautiful years.

Now...I'm sure that you are reading everything you can both here and on the OUCH site (button the the left).  There is a ton of information both medical and home remedy things.

This is the best place for sufferers and supporters.  We will do everythng we can to help.  Please tell us more....if you have questions we will do our best to answer them.  Get you hubby here.  It helps CHers to know they are not alone.

It's a struggle for sure so you need to take a bit of time for yourself when you can....even a walk or a bubble bath helps.

Please remember we are here...keep in touch.

Big Hugs,
Jackie

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Start treating the CH with CH treatments.
Hang tough. You'll be glad you did. Take some time for yourself. You deserve it.
Pain meds are not a treatment for CH.
Caffeine, 02,02,02
Rivea Corymbosa...demon beater



clusterbusters.com
It works
all the best
thebb

"His Nero has him on Methadone (titrating off), Ketamine and Butabitol to control (mask) the pain.  Nothing really seems to help."


I agree wih BBZ. the side effects of these meds can be far worse than CH and worse yet make the CH worse.

Butalbitol is a barbiturate and thus addicting with all the side effects you mentioned.

Keatamine can make one appear bi polar or schzophrenic and a world of hurt can come from it over time. Though it may be usefull for CH its not a very common treatment.

Methadone is a narcotic and again not really usefull as a CH medication.

Combine the 3 and you get all that you have plus.

My opinion though not really asked for is get off all of the above meds mentioned with the aide of a NEW doctor!! Improvements will be quick and then start with a more educated treatment plan. Withdrawals can be hard.

Cant help with the Bi-polar side and if thats the reason for the treatments my apologies. Life can be better.

try the houston headace clinic, the doctor is good,

Dear Ms Buster,
In reading this thread, I'm thinking your husband has a lot of options still available. I'm not sure his meds are what he needs to control the Beast. I'm not the expert, by any stretch, but there is plenty of information here to help you-and a ton of support as well!
Please begin by reading and asking questions. There IS quality of life for Ch'ers.!

Hang tight, Mrs. B!

Cathi

Hello,

As far as advice goes everyone has pretty much said it. I just wanted to tell you that you are not alone.

I have CH and I married someone who has CH. I have one child who has CH and one child that is Bi Polar. Our house can be messy, crazy and sometimes not a very pleasant place to be if we are all in cycle at once :(.

But we will survive and so will your family, like everyone else has stated please see about getting your husbands meds changed.

Hi,

I know it sems as if there is no end in sight - I did too. After 12 years of suffering cycles of CH and going through the bad hits - holding down a job and everything else I finally read the report in the link which BBZ posted to you.

I learned so much about the condition and found that one of the simplest of treatments worked for me. That was five years ago.

The best advice I can give is don't give up hope, do read the link in BBZ's post and give yoursef a big hug for being such a strong and caring person.

reg :)ards,

Melvyn :)

ps The night is always darkest just before the dawn.

Linda_Howell wrote on Jun 22^nd, 2008 at 4:05pm:

Your last name COULD just hold an answer for you. Linda

yeah that kinda caught  my attention too.
wow. i'm so glad to see so many new supporters on the board.

welcome to the board mrs. buster!

i've been i episodic sufferer since i was a  child. i have lost a few jobs due to ch over the years. the cycle before the last one i got very destructive. after 3 months of being unemployed i couldn't keep a grip on it anymore. i contacted this layer who was going to help me get my unemployment compensation which my ex employer had denied me and his retainer fee was $1700. after he told me that i calmly  told him "now i'm not trying to be a smartass here, but here i sit with my family in a candlelit room eating cheese and crackers using rain water to flush the toilets, how am i supposed to come up with $1700". he said  "well thats what i'm going to need for me to get started on your case mr. endicott" i hung up the phone and i sat there for a minute. then i got up and went on a rampage. i broke everything in the house. all the tables and chairs, lamps you name it. i would say at that point i was beyond depressed.
 the reason i'm telling you all this is because it doesn't have to get to that point. when i did all those destructive things i was alone. nobody could relate to what i was going through. during my last cycle i was a ch message board junky. i didn't feel safe driving my semi truck with this condition so i parked it and stayed home. since i couldn't drive and i couldn't sleep, i constructively spent all that time here. i even got my dispachter to check out the site so she could could understand what i was going through.we can't offer any cures here but we can offer some good advice and acceptance. allot of us here on the board will take the info found here and suggest those things to our nuero.
  it would be nice to get mr. buster on the board were we can get to know him a little better and help him keep his sanity.
  welcome to the board mrs. buster. feel free to graze the board and feed your brain and ask questions. it's the best defense against ch i have have found thus far.

Methadon is a very addictive opiate and will not work for CH. I cannot understand a doctor who would subscribe this. The withdrawal symptoms for this are known to be harder than getting off heroin and lasting much longer. I really don't get it, methadon to help with CH? Never heard this before.

But I am very sorry to read your post, and hope better times are ahead soon.