Hi All

Well im new to this so please be gentle...diagnosed with ch in June 07 and had my last attack in August 08 which involved been rushed to hospital at midnight. Im now on 75mg of amitriptyline a day and to be honest some days dont know if im on this planet or the next planet.

Im single and in yorkshire and im pleased to have found this site and know that im not alone. Would love to hear from other people as this is all new what else do i have to look forward to with having ch.

Thanks for being here for us... I was just diagnosed...  This is all pretty new for me.  It's really great knowing y'all are here.  I'm sure I'll have tons of questions.  Not to repeat myself, but it's hugely comforting having a place to turn where everyone understands this beast... Thank you.

I just discovered this site yesterday and it was like a weight had been lifted from my shoulders.  It is so hard to suffer and not be able to explain what is really going on and how I really feel.  People give you "the look" like it can't be that bad but you know better.  I actually suffer with the ch along with migraine headaches so I feel like I have been cursed twice.  As I type this I am having an alright moment, but as well all know each good moment must be cherished because it can change in an instant.  I have suffering with this bought since the beginning of the year (what a way to start the new year).  I guess I shouldn't have been surprised but I was.  It had been a year since I had an episodes so this threw me for a loop. 

It is so nice to have someone to talk to who know what I am going through.  I find it hard to explain to someone who says they care about you but runs in the opposite direction when the pain starts.  At least now someone can listen to me.

The fear of going to sleep for fear of waking up with pain is my reality.  Because of the migraine nature of my ch I now have been really dealing with the nausea.  I mean what does a 110 lb 5'2" woman need to throw up daily?  I really can't afford to lose any weight but when you can't keep anything down what do you do? 

Funny how I rock when the pain is at it height along with squeezing my head knowing that hasn't worked in the past and that no relief will come of it.  But I guess it makes me feel like I am doing something.  I think God has heard my voice so much lately he is tired of hearing it, but I can't stop asking "Why me?"

I am going to try the "water treatment" and see if that helps.  The bathroom has been my friend today and will probably be my friend for days to come until this episode is over.

Thank you so much for this website.  I now have a family I can talk to and who will understand.

People don't understand unless they have one.  They think you just want to be babied. My sister get's them too and still goes to work. I work too but fortunately not full time at the moment so I have some days off. 

It feels like the Grim Reaper is coming to get you.  My sister says its like a Pirates of the Carribean movie where you are a pirate with a knife in your eye looking around 

We are both fighters, my sister and I.  I refuse using steriods or lithium as one doctor quickly wanted me on.  I use varying tricks of both health products and medication that often knock it away for me.  So far, we work through them.
Sometimes we feel like this    and doing a lot of this     but I just refuse to let it stop me living life or to cater to it so that its the center of my life.

I think women have it harder though? My sisters seem to get them more with their cycles. 

Thanks for this site. Its good to be understood.

Be very very careful with new meds.  I had a script filled once and it said take 1-2 tablets at bedtime.  I took 2 and it almost killed me.  I have never been so affected by a medicine in my life... I should have gone to the ER.  I called the doctor and he said I had to get used to the medicine so only take 1 tablet.  It almost did the same thing. Finally I called the doctor and asked if he was sure 100 mg of amitriptalyne was not too much. He siad 100???? I prescribed 10mg. Turns out the pharmacy filled 100 mg by mistake. So be very careful.

Gary

Tough call about which is the best part about this site.....the incredible wealth of info??? or NEVER having to explain what a CH is and that NO it's NOT a tension headache we CAN'T just relax and no it's NOT just a migrain! Welcome home.

Joe

Ouch....I thought it was bad enough coming back after an 18 month remission......damn....19 year remission!!!!!..........have you ever tried melatonin? It's an otc supplement you can find at vitamin and health food stores. Many can avoid or reduce the night time terrors by taking 9-15 mg 30 minutes before bed time.

Glad you found us, start educating yourself and working with your doc. Glad you already have 02, 30 plus years it's still my first line abortive! Welcome home you devil you!

Joe

I always incorpoarte my attacks into my dreams too! I dream an attack is starting, I dream I'm rigging up my 02...I dream the 02 isn't working!!!! By the time I really wake up I'm usually pretty deep into an attack!!!

Joe

There have been several dream threads in the past, they get hysterical after a while! It is fairly common!

Joe

Welcome to the board! yeah prednisone will provide 100% relief for me too, but long term use can cause some nasty side effects. I use prednisone for the 2 weeks I'm waiting for my prevent, lithium, to kick in. Like you, I love my micro brew beers, but on cycle it's just not worth it! It's like a guaranteed hit if I try a beer.

You haven't mentioned oxygen. Still my first line and most effective abortive. Read the oxygen link on the left, used correctly it's been a very effective abortive for many!

Glad you found us, hoping you catch a short cycle and can get back to your beer tasting!

Joe

Danged glad you've joined us! If you have not already done so, read the 02 link on the left. HOW you use it is critical to its success. The key is to get 100% 02 to the lungs, no exhaled air, no outside air. That's why we recommend the high flow regulator and the non re breather mask.

You haven't mentioned any preventative strategy. With cycles lasting as long as yours do, you may want to read up on the options on the med page and discuss with your doc. I use lithium at 1200 mg a day while on cycle. reduces 70-80% of my attacks, which really cuts down on the abortives, imitrex etc.

Glad you're here, hoping we can help you out!

Joe