Hi all. I've been reading the message boards for the past month or so but I haven't had the courage to post my story yet. Truth is, I'm still just learning. My boyfriend has them, and he's currently in a pattern. I remember he had one the first weekend we spent together, and he said that I helped. I don't know what I did other than kiss his forehead and beg God, but apparently it helped. I think now that we are in love and we really trust each other, he's more comfortable showing me his pain...or else it's just getting harder to hide the pain. I can't tell. Now I hold him as he gasps and twitches in pain, dreading the day when my kisses and gentle words won't be enough to calm the beast.

He's tried a lot of different meds in his lifetime, and I'm overwhelmed with how much I have to learn about what doesn't work and what he hasn't tried yet. He's frustrated with missing so much work. I'm frustrated with watching his frustration and wishing I could do something about it.

I love him and I'm in it for the long haul. That's why I'm on here.

Thanks, and I hope to get to know you all and share tips or suggestions in the future.

Hayley

Some quick "light" reading for you to give you an overview:

First off Flipperlips makes a great point. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your lives. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work.

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, have him chug it down as fast as he can when he feels an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, as a supporter, knowledge is your best ally. We’ll help you all we can. And thanks for supporting my CH brother. My wife found the original streaming CH board many eons ago and saved my sanity. Also...nudge him to join the board. There are too many treatment options available, just in the last 10 years, to curl up and take the hits.

Joe

Hi Hayley,

Good for you for coming here! There is hope. There is help. It's just a matter of finding it yourself sometimes. This place was where my husband (Lucas) and I found both after years believing there was none of either to be had with these things.

My husband also likes if I'm with him during an attack; little good as it does physically, at least he isn't alone and he is loved. Some prefer to be alone- it's a personal thing to each sufferer. But mine prefers me with him, and so I will be- even if it means waking up in the night to sit with him.

My husband is out of cycle now and it's easy for life to be good, but one of the MOST important things you can do is try, to the very best you are able, to make life good in a cycle. It's possible, it's difficult too, I will not lie- but possible, and it helps him to hold on through the pain.

Also, don't forget it when the cycle is over. My husband and I did that for years, but no longer. I have his kit and journals ready to go. I pop over occasionally to keep up to date. We have him on Batch's formula and a few other things to try to prevent him from ever having another of these. That is my goal and I will forever be working towards that. Which leads me to...

...my main point to share. FIGHT! Fight for your man. I will be absolutely damned if I will let these things have my husband! And so I fight for him. I make him take his meds, go to his doctor, take his oxygen correctly, and research research research. I've said it before, but in a battle for Lucas, put your money on me!

*Hugs* I know how hard it is for you. We're here for you.

Thank you all so much! I'm so happy to have found a place to help. I'll be spending my spare time doing research on here. Thanks for the tips and links, I will keep you posted.

Hayley

Try Imitrex?