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(Message started by: christinenscott on Mar 16^th, 2004, 1:03am)

Title: New Cluster Family
Post by christinenscott on Mar 16^th, 2004, 1:03am

Hello Everyone Out There,

We are a new Cluster Family. Scott, 43, my husband is experiencing Cluster Headaches. I, his wife, Christine, am beside myself watching him in such pain around the clock. Scott does not deserve this kind of punishment. If he is in pain, I am in pain, when he does not sleep I do not sleep, when he does sleep, I do not sleep. He has been going through this for nearly 3 months now. I will write more when I am not so tired, but I wanted to say that we are here. Just like Horton Hears A Who, we are here.

Yet doctors do not seem to hear us. He's upstairs sleeping now, doped out on Demerol. Who knows how long THAT will last. He's been having attacks 24/7, back to back for eight days now. This is a perfect voodoo hex to lay on someone you don't like, but we cannot think of anyone we don't like enough to lay it on.

The only positive thing we can say right now is that seven months ago we adopted a dog from the local animal shelter. This dog, Jack, is constantly concerned for Scott and provides great comfort in ways that humans and drugs so far cannot. Jack wakes me when Scott is up pacing around in the night, so that I can pace with him.

We don't know what to do right now. We just want it to be over, even for a week to be over.

I'm not adding any type of smiley face to this. Smiley faces don't apply here.

Christine

Title: Re: New Cluster Family
Post by ave on Mar 16^th, 2004, 4:17am

Christine, sadly welcome here. Your husband is lucky tohave somebody like you who cares and does not call it "just a headache I get 'em too..."

That said, please tell us more. What drugs has Jack used? What does the doctor say?

You absolutely must read all that is under the buttons to the left, then go to the OUCH website and read some more. It is up to you to supply the ammo to help fight the beast.
Demerol isn't really the right stuff for that.

And if needs be, try a different doctor, esp, a neuro.
The OUCH website has a list of docs who know about clusters and can help you the better.

There is also a special board here for supporters likle you. Where you can let down your hair and get support for YOU, for if you break down, who's to care for your clusterhead?

Use the facilities on this site. It was made for people like us, supporters and sufferers alike.

Title: Re: New Cluster Family
Post by BobG on Mar 16^th, 2004, 4:27am

Hi Christine,
Just want to say welcome to the board. Sorry you had a reason to come looking for it.

There are some wonderful people at the 'Supporters' section of the board. They can help you get through.

Title: Re: New Cluster Family
Post by sandie99 on Mar 16^th, 2004, 4:35am

Welcome to the Cluster family!

It's sad to welcome new sufferers, but luckily, you found this place. When there's a clusterhead in the family, this is the place to be!

Best wishes & loads of PFdays,
sandie99

Title: Re: New Cluster Family
Post by ChrisUhl on Mar 16^th, 2004, 6:41am

Hi Christine

Sorry about Scott but welcome to the family.

I can understand how frustrating it must be for you. Half a year ago I met this new fantastic girl. And when she first witnessed an attack she was devastated. I've been trying to explain to her the pain and the feelings that goes through my head. And I think she's beginning to understand and accept it.

I know it's hard to accept that anyone, and especially a loved one, should endure such pain. But the sooner you can accept it as part of life, the sooner you can win your life back. There will of course be days thinking "why us". But they will get more seldom in time.

My advice to you is - listen to what Scott want's when he has the attacks. Sometimes it's nice to be held. Sometimes a clusterhead just want's to pace around undisturbed. Talk to him about it when he's not having an attack. And maybe agree on some signs so he can let you know what he want's when the beast strikes.

Know that you're already doing the best thing you possibly can - care for him. Although it may be hard to understand that is the best help a clusterhead can get.

Best wishes

Christian

Title: Re: New Cluster Family
Post by BarbaraD on Mar 16^th, 2004, 9:31am

Welcome to Clusterville. Sorry you had to move into the neighborhood, but this is the place to be for clusters.

You've already been given some really good advice - go to the doctor PREPARED.

I agree, Demerol is not the answer. THere are preventative drugs and coctails as some call them that will help a lot more. The problem you'll endure is finding the right combination of what's right for HIM. We all react differently, so patience is one of the things we learn - but we want it NOW!

Stick around and read everything you can about what's worked and what hasn't. Print out information to take to your doc - go armed and demand the proper treatment. A good neuro is a blessing to us all. You may have to go thru several before you hit on the right one, but don't give up - there's one out there that will work with you and knows what he/she is talking about.

We're here - don't forget that. This board has been a lifeline to a lot of us over the years. Ask questions, vent, whine - whatever you need. We UNDERSTAND.

Hugs BD

Title: Re: New Cluster Family
Post by TxBasslady on Mar 16^th, 2004, 12:41pm

Welcome to the board, Christine.

Sorry that Scott is suffering, but let him know that he is not alone. Lots of great support here, and lots of folks able and willing to listen.

I agree with Barbara.....you and Scott need to read up on the links and arm yourself with information you can take to the doc.

Hope things get better for both of you.

PF vibes,

Jean

Title: Re: New Cluster Family
Post by Rock_Lobster on Mar 16^th, 2004, 2:40pm

Agreed with all here. Ditch the pain killers... they do squat anyway. The Pred/Verap/Topa/Imitrex/o2 are keeping me pretty PF this episode. Had my first PF 24hrs yesterday (w00t!). And the days with pain are too trivial to mention with the Trex.

All the info you need to beat it down is right here. Sustained relief is 8 hours away with the right doctor.

Rock

Title: Re: New Cluster Family
Post by ZAIRA on Mar 16^th, 2004, 3:44pm

Hi Christine, I feel your sadness and I'm terribly sorry...
We must survive and go on with that beast... stress... chaos... nervousness... fear... and all the bagage of pain she gives us >:(....

And you? The same.... So sad. :'( :'( :'( :'( :'( :'(

Thanks for understanding..... your husband is lucky to have you....

All the best from Italy...... Zaira

Title: Re: New Cluster Family
Post by Linda_Howell on Mar 16^th, 2004, 3:49pm

Christine,

Some people here beat me to it. Get him off the Demerol before you CAN'T.

If he's having back-to-back Headaches 24/7 it's not working then is it? And dollars to Randys doughnuts, it's giving him rebounds.

LindaH

Title: Re: New Cluster Family
Post by cootie on Mar 16^th, 2004, 4:18pm

Hi Christine.....welcome......I am also a supporter here but Brad's luckily out of cycle for a while yet........wish it was forever Pam

Title: Re: New Cluster Family
Post by Luke63 on Mar 16^th, 2004, 5:34pm

Welcome Christine...and A big welcome to your husband too!!! Like everyone else said...."Cluster Acres is the place to be!" We know what u and your husband are going through...mostly all of us are going through it too. We're here...write when you need to..we'll be here..we're not far. And as for your husband.....he's a strong man...believe that....even though it hurts you. It takes a rare breed to be a clusterhead...thats from experience...25years of it myself. Remember.......it gets dark before it will get light...but it will get light. Luke

Title: Re: New Cluster Family
Post by Slammy on Mar 16^th, 2004, 6:20pm

Christine...
Ditto a million times what Linda said... dump the pain meds... all they do is mask the pain, and not very well at that.... but they bring on a whole world of other issues! Good Luck and you have tons of support on here!

Slammy 8)

Title: Re: New Cluster Family
Post by BlueMeanie on Mar 16^th, 2004, 6:31pm

Welcome to Clusterville Chirstine & Scott.

Agree with what the others have already said. It's a bitch living with the pain wether you're a supporter, or sufferer. One thing to remember is you're NOT alone. Read all you can and be sure to check out the meds section. There ARE meds that work most of the time for most of us.

Good luck to you both. It WILL end eventually. Hang in there and keep the faith.

PFDAN

Title: Re: New Cluster Family
Post by t_h_b on Mar 16^th, 2004, 6:44pm

Welcome aboard, sorry that you're in such a crisis state right now.

A lot of people have used prednisone to break a cluster until other meds kick in.

Your husband will need both preventative meds (like verapamil, lithium, melatonin, psilocybin) and abortive treatments (Imitrex or other triptans, oxygen). There's a lot of good info here and on the OUCH website (in the library). Plus you have all of the hundreds of man years of CH experience with the posters here. You can get almost any question answered or at least get a few opinions.

Ditto on everything above, the meperidine is not the answer and if that is what your MD is giving your husband for treatment you need to either ask for what you need specifically if he or she is interested in helping or change MD's. Even with a good MD you need to educate yourself. This is one situation where you can't go to a doctor and assume you will answers and adequate treatment.

Also, check out the topic for supporters--you can get ideas and support for YOU as well.

Title: Re: New Cluster Family
Post by stevegeebe on Mar 16^th, 2004, 8:32pm

Get o2.

Get informed.

Get good Neuro.

Welcome.

Steve G

Title: Re: New Cluster Family
Post by christinenscott on Mar 16^th, 2004, 10:32pm

Hi Everybody,

Boy oh boy do we feel loved!! Thanks so much for all of your words of comfort.

Scott does have Oxygen, but when the Beast grabs him in the night, it is sometimes too late for it to help. Our "doc" gave him demerol to "break the cycle" of pain. We have an appt with a neuro on Friday but that is many hours and attacks away.

He's done Prednisone, a wide array of migrane stuff, Vicodin, and Lidocane nasal spray. Nothing much helps.

After reading this website and finding recommended docs, I see that there is one in San Francisco, only an hour and a half away. I'm calling that doctor first thing in the morning.

Again, thanks so much for all of your love. I printed out all the responses for him and he was truly touched. You can't imagine. He felt that you all truly understood. It makes a world of difference to us. Friends and family mean so well but they do not understand. Bosses just want us back to work yesterday. But you, our beloved ClusterCommunity, you understand.

Ok, then I will try to get him to get off the demerol before it's too late. It has been nice to see him sleep though. He never sleeps.

Deep Breath.

Remember: Madness takes its toll. Please have exact change.

Title: Re: New Cluster Family
Post by Linda_Howell on Mar 17^th, 2004, 12:28am

Christine,

Since you live in California, if you go to www.calouch.org we may be able to help you in finding a (new) Dr. etc..

We're a chapter of OUCH.

LindaH

Title: Re: New Cluster Family
Post by FZfan on Mar 17^th, 2004, 12:47am

Christine,

Your post sounded very much like it could have been a post from my wife. Believe me, the support you give is very much appreciated even if he's telling you to leave him alone.

Sometimes I like having my wife with me during an attack, and sometimes I don't. Either way, her support is a large part of my ability to fight off the beast.

And the support of this board is an additional boost in the battle, as the simple knowledge that I'm (we're) not alone is a very powerful thing.

Make sure you are using the oxygen correctly! I wasn't until I came to this board and now it's working great for me where it wasn't before.

As all the others have said, gather all the info here you can. After that you will probably find that you know more about this disease than most doctors do.

Title: Re: New Cluster Family
Post by Charlie on Mar 17^th, 2004, 4:39am

Christine: I like you already. 8)

You are doing a great job and your coming here is part of that. I suggest you look around all over this site. You'll find lots of good ideas about dealing with this horror.

Here are two helpful links:

This is a link to a technique that worked very well for me:

http://www.netsync.net/~charlies/

This one is to a letter written by a sufferer that is the best we have to explain to friends and family that this horror has nothing to do with what is thought of when people hear “headache:”

http://www.ouch-uk.org/ch/note_colleagues.cfm

Glad to have you and let us know how you're doing.

Charlie

Title: Re: New Cluster Family/Scott Speaking
Post by christinenscott on Mar 22^nd, 2004, 11:01pm

Good afternoon All,
I thank you all for the support and feedback that you have given Christine over the last week or so. It has been instrumental. I can't say that I have been much help to her. Your insight has given her strength and your suggestions have been followed, I assure you!
It is hard to imagine the acute pain that accompanies the "beast". Each attack drains me physically as well as emotionally. Is there light at the end of the tunnel? Our latest Dr. (Neurologist) has completely eliminated pain medication from our fight. The only remaining weapon is time: (Oxygen does not appear to help any longer).
Each attack last about one and a half hours. I usually have an hour between where I only deal with congestion and teeth pain (24/7). Not good odds, eh?
I'm certain that I'm not alone in my current plight. Our Neurologist tells me that I should expect to see results in three days. Please, if your experience can support this, let us know!
I am very interested in thoughts and experiences on the impact that "the Beast" has had in your careers. It appears that my position may be filled and I could be offered a position that has a lower status and salary. Do we have any rights or options here to assure that we do not suffer financially?
Once again, thanks to all who have opened arms to Christine and I during this troubling period. Please continue to keep us in your thoughts.

Sincerely,
Scott Welton

Title: Re: New Cluster Family
Post by fubar on Mar 22^nd, 2004, 11:47pm

Scott,

It's a nasty thing to have to battle, but it does get better. Getting the pain meds out of the picture will certainly give you real hope of finding a preventative/abortive combo that works for you. I was chronic almost 3 years solid before I found what worked for me, so just know it will end and there is hope. Always tell yourself that, but realize you have to do what's required. meaning, if the doc says no pain meds, there is a reason and it's usually a good one.

I had to go completely med-free for a few weeks before I could know what was doing what. It's critical. Self-medication is a trap we can all fall into, and since it rarely fixes anything, the tecdancy is to keep increasing the medications level until you have REAL problems.

There is hope. You are in the right place and you are getting good care (it sounds like).

fyi, you may want to explore alternative treatments like those described at www.clusterbusters.com. It worked for me like, er, magic. I went from totally chronic to completely pain free, and I'm not looking back.

-Fu