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        Supporter's Corner >> Supporter's Corner >> Feedback on the Diamond Headache Clinic
        
(Message started by: Susan_L. on Oct 13^th, 2003, 11:59am)

Title: Feedback on the Diamond Headache Clinic
Post by Susan_L. on Oct 13^th, 2003, 11:59am

Hi everyone! I am a new member - my husband, Mark, suffers from clusterheadaches. We have been married for 7 years and together 9. He is 37 now and has had CH since he was about 20. When we were dating, the first time I saw him give himself an imitrex injection - it scared the crap out of me! :o

We have tried many, many treatments. Unfortunately, most have been a bandaid as opposed to real help. Like I said before, he uses Imitrex injections to abort, he has had steroid injections around the occipital nerve in his neck 3 different times. This worked pretty well, it gave us 12 months of headache free, normal life. However, it was incredibly expensive - $6,000 out of our pocket each time for a grand total of $18,000 which we are still paying off.

He has seen an allergist for the last 5 years and has explored the sinus infection and allergy route. He even saw an ear nose and throat specialist because I saw a news piece on TV about polyps in your sinus cavities that could be causing the headaches.

His general practioner put him on prednisone last January to try to break the cycle. It did work but, everytime he tried to ween him off of it the headaches came back full force. He also put him on Verapamil. It didn't seem to have any effect. At the beginning of September, after much prodding, he finally went to the Diamond Headache Clinic here in Chicago. (He works only a few blocks from the clinic). His doctor there increased his dosage of Verapamil to 720 mg/day (360 twice a day), and also put him on Topamax (50 mg/day) and Doxepin (25mg/day). It's only been a month but I would think we should see a difference by now. The side effects are horrendous. He is so tired he can barely keep his eyes open and has horrible mood swings that have made our life even more difficult. They did give him Imitrex samples but he's thru them already.

They also prescribed the oxygen tank for him. He doesn't think the O2 is making a difference but I read on someone else's message about putting the line in ice water. What does this do? Are there any other tips to make the O2 more effective?

Can someone give me some feedback on the Diamond Headache Clinic in general? Was it a good/bad experience? Did they help you?

Now, I'd like to vent a little. These CH have made our life together miserable. It has put a strain on us not only emotionally and physically but financially too. In one month, I spent over $2,000 on prescriptions. When he has attacks thru the night and doesn't sleep, he doesn't go to work the next day. He doesn't have sick days so we have to survive on partial paychecks. Luckily his boss is pretty understanding because his wife suffered from severe migraines. So, I don't worry so much about him losing his job. I work too but I still worry about how we'll pay our regular bills let alone all the additional medical expenses. The money is really the least of my worries though - we'll make ends meet somehow.

The emotional stress is the worst to deal with. We have 3 small children, Jake, 5, Hanna, 3, and Trevor, 19 months. It is very hard to explain to them that Dad doesn't feel well or is extra crabby because of his headaches. They don't understand and how could they? To see the looks on their faces when he takes his pain out on them breaks my heart. But, I try to mend things as best I can and move on. Even when Mark can't join us, I try to do special things with them to keep our life somewhat normal.

I am a "fix-it" kind of person. CH are so frustrating because I can't fix them. All I can do is do as much research as I can to keep up on what's new and what's working for other people so that we can cope with it. Mark says at times I am not very sympathetic. But, I try to be as best I can. I also tell him that our life does not stop because he has a headache. We have 3 kids, jobs, bills, and a home to keep up with. Sometimes I feel like I just have to keep going because if I stop and dwell on it I will completely break down. I know he has it much worse than I do because he has the physical pain to deal with, he didn't ask to get these. He constantly lives in fear of his next attack. Afraid to do go out, have friends over, etc., etc. It's hard on all of us.

OK, I've vented enough. This is my first message and I hope I wasn't too long-winded! If anyone has any helpful hints or advice please respond. What I've seen of the website has been wonderfully reassuring that we are not alone!

:)Susan L.

p.s. Is there a convention associated with this group? We'd love to take part in it if there is.

Title: Re: Feedback on the Diamond Headache Clinic
Post by Margi on Oct 13^th, 2003, 12:19pm

Welcome, Susan - you sound like an awesome supporter. Sounds like you've got everything under control. Make sure hubby's got a non-rebreather mask for his oxygen and that he's getting on it as soon as he feels an attack coming on. Early prevention is a big deal in oxygen therapy.

Also, give him dramamine or benadryl before bed. It just might get him through the night, unattacked, and either are available without prescription.

Check out the Family Services pages (the link is at the bottom of my post here). There is a page for kids there that might help your children to understand what Dad's going through.

Again, welcome - and please feel free to email any one of us if you need a shoulder.

Keep up the great work!!

Margi
Calgary, Canada

Title: Re: Feedback on the Diamond Headache Clinic
Post by Jackie on Oct 13^th, 2003, 2:17pm

Hi Susan.
Welcome to the board. As always I feel sad when a new member shows up but this is the best place you can be under the circumstances. There is a wealth of knowledge here and on the OUCH site. You will also find a ton of support.

Now......as to Diamond....My husband is a chronic clusterhead. He went to Diamond 10 or 11 years ago. The hospitalized him and gave him the histimine drip IVs for 2 weeks. It did NOTHING to help. It did, however, put over $20,000.00 in their bank account. They did suggest 02 therapy but did not instruct us in the correct way to use it....we learned that here. Read the 'oxygen info' (button on the left). I might have been the one who wrote about 'cooled' 02. I have put Blake's line and even his portable tank in ice. It seems to boost the effect of the 02 and it is soothing to him.

Blake is on Verapamil, Lithium and Topomax now. He is doing the best he has done in 16 years. This seems to be a very good combination for him. Has Diamond suggested a higher dose of Topomax. Blake started at 50mg and took it up 50mg per week to the current level of 150mg.

Please keep us posted and we'll try to help you all the best we can.

You sound like a wonderful supporter....hang in there....things will get better.

Hugs,
Jackie 8)

Title: Re: Feedback on the Diamond Headache Clinic
Post by TxBasslady on Oct 13^th, 2003, 7:26pm

:)
Hi Susan,
Welcome to the board ! Sorry that your hubby suffers from these horrible ha's.

I can vouch for the pain. It is certainly unlike anything I have ever been thru. I know it must be hard to understand and it will destroy families if you allow it too. Please read all the links to the left. That information is so valuable ! Have you read all the supporter threads? There you will see how others have been able to cope with the disruption in their lives. Please read all the info and come back here and ask questions, if you need too. There is usually someone here on the board 24/7.

And yes to your question about a convention. I think the BOD is working on the location of the 2004 convention site now.

Hope your hubby finds the meds that he needs so he can get some rest and have some pf time.

Hang in there...please don't give up ! :)

Sending lotz of pf vibes to your hubby........ :-*

Jean

Title: Re: Feedback on the Diamond Headache Clinic
Post by BobG on Oct 13^th, 2003, 8:44pm

Chillin' O2..............click this

http://www.clusterheadaches.com/wwwboard/messages/50042.html
Bob Kipple “Cool O2” May 10, 2000

You sound like a wonderful supporter. Thanks for being there.

BUT, I just have to say it and it ain't nice..........
Your husband is a poor Clusterhead. Taking his pain out on the kids is wrong, just plain wrong.

Title: Re: Feedback on the Diamond Headache Clinic
Post by Woobie on Oct 14^th, 2003, 7:21am

Hey Susan
Welcome !! I know EXACTLY how you feel...

Check your IMsand your email - k?

I think we live close to each other....

tina :-*

Title: Re: Feedback on the Diamond Headache Clinic
Post by cathy on Oct 15^th, 2003, 12:34pm

Hi Susan and welcome, im sure there isn't a single supporter who hasn't felt like you do now....hang in there your doing a brilliant job from what I can see.....O2 has to be used as soon as possible I think for it to be effective...hope things get better for you soon.

Keep us posted!

PF vibes to your husband.

Cathy :)

Title: Re: Feedback on the Diamond Headache Clinic
Post by Camerooskis_Mom on Oct 16^th, 2003, 7:26am

Diamond HA Clinic is great for migraine. Only recently have I seen them dedicate real resources to CH. And they, as are many, on a learning curve. I do know they have a clinical going on right now.

They have been great though w/ my little guy and he prefers going to his Neuro at Diamond over the Pediatric Neuro at U of Chgo Children's Hospital. Since he is only 8, it has been an eye opening experience: trying to find what works, what kind of works, what absolutely has no affect - and what he definately will not do. It is all a process of elimination I'm afraid. At least at Diamond, I'm given the samples to try and don't have to buy--and when they found a drug that kind of worked--they sent me home w/ a 6 month supply.

Hang in there, and stick with what works and eliminate what doesn't.