Hi guys,

I was notified of my appointment time with the neuro today-November 4th!  I was put on the cancelation list so I have a chance to get in earlier.

Mixed feelings though, I am already on topamax, verap, magnesium. I have had these headaches since I was 17, now 43.  Just recently been diagnosed with CH.  But I also have "other" headaches, migraines.  I have been on all the triptans and every other range of medication they could come up with in the past 24 years to no avail.

I am so tired and worn out right now from the pain and then the trying new this and that and not getting any relief for long.  I know you will ask about O2, No not yet, I will be asking the dr about that as soon as I can see him.  

I have just been discouraged in the past with all the "new fixes" they come up with and never getting releif for very long if at all.  I have spent a lot of time reading on here and other sites and see that others have the same experiences with meds not working for very long.  I'm scared right now, pissed off and mix a bit of feeling sorry for myself in there.  It's not like me, I am the one that usually lifts the spirits of those around me and I am a mess right now.  I want to scream, throw things and more than anything I want to have peace.

I know that these feelings will pass and I will get it together and do what I need to.  It just feels a bit overwhelming to me right now.  Thanks for letting me vent here, no one else would understand this.

Kathleen
Wichita, Kansas

I totally understand what you're going through.

Even though it has been only around 10 months for me, it really wears you down when the only relief you get is very much only short term. You start to ask the questions - my life is being stolen from me, and it's the only life I've got. What have I done to deserve this? Will I ever find anything that will work?

I really, really hope that the neuro will be able to help you.

- Hugs and PFDAN :),
Rosa

All we can do is love you and tell you we understand. Sorry you're hurting, that just sucks. :'(

[smiley=heart.gif] [smiley=hug.gif]

Hang in there, you'll get through this too.

Guiseppi

[smiley=hug.gif]

I hear you and I understand your pain Kathleen.  You will get through this.  You will find another magic bullet.

-Dennis-

Ok Ms W....

Let's see what we can do to help....

How much of everything are you on??

Do you have any energy drinks? (Have you tried them?) If not go out and get some -- make sure they're loaded with cafeine and taurine (at least 1000 mg of taurine). Chug one of these at the first sign of CH (if carbonation bothers you - open the can and let it set in the fridge until you need it -- that works good to get the carbonation out).

Melatonin at night (start with 3-5mg and work up to 15-20 - until you start SLEEPING at night and not getting hit -- this make take a week or so, but keep on it - DO NOT GIVE UP cause it don't work the first night).

As to the O2 -- Go back to you reg doc and get him to write a script for it until you can see the neuro. Just tell him "I" said you NEEDED it! ;)  (That should scare him/her!)  Seriously your reg doc can prescribe O2 - just let him know you need it. You'll need a couple of E-tanks and a 15 liter regulator and a non-rebreather mask.

Your insurance should cover it.

But most of all -- stay right here and complain all you want to. We DO understand every word you're saying cause evey one of us is/have been right where you are. Hopefully we can get you back to your happy self....

Hugs BD

Hey
Most of us have felt your despair.  Its a rough battle.  But you have been beating this thing since you were 17.  Don't stop now.  As far as the o2.... Instead of waiting, you can get welders oxygen.  ITs te same darn thing and you do not need a prescription to get it.  Find yourself a local welding supply store.  Invest in some tanks.  Refills will cost about $25.  In case you think I am nuts, alot of people here do it including myself.  Keep fighting and don't leave this group.  ITs the only place people truly understand

Hi Kathleen,

Sorry you are hurting right now.  Rant anythime you want, we really do understand your frustration.  I also use welders 02 and it helps abort my ch within 5 minutes almost every time.  If this is something you want to try, send me a pm and I can help you get it set up.

Beth

This condition would break anybody down. Get your weapons ready and kick some demon ass. Never quit ever.
Demon beating juju vibes coming your way...lots of good advice for you to check out. PF times are ahead for you.
all the best
thebb

Kathleen,
I know exactly how you are feeling right now. Hang in there. Do go back to your doc, and get a script for O2, 15 liters per minute with a non-rebreather mask.

If you have to get the welders O2, then when you go tell the gas company that sells the tanks, and fills them, that you want a tank of O2, do not tell them it's for a medical condition, just tell them you need it for welding. When it's empty, you can take it back to them and fill it... this really is a very cheap way to get O2. Beth can help you get it set up.

Use the energy drinks, they really work! Barb had some good ideas... the melatonin is over the counter, you don't need a script for it.

Hang in there. We have all been where you are and it's ok to come here and vent all you want! And what thebbz said: Never quit ever. You are stronger than the beast, and you will kick his ass! Meanwhile, come here and vent away... we are here to help you anytime, any way we can.  [smiley=hug.gif]

Wish I just hug your neck and make it all go away, I am sending you hugs and good wishes. Try the o2!

Kathleen, my heart aches for you as I know everyone here does as well, but don't give up keep up the fight.  We know the peace you are searching for.  If you have not already please PM Beth and learn how to get set up on the welders O2 while you wait for your neuro appt.  I like you went to all kinds of abortive measures before I found O2.  I was fortunate enough to start out on med O2, but obviously others are and have used welders O2 for years with no problems.  You just don't have to suffer when you can get relief and while I have seen a few posts that O2 did not work I bet 99% of the posts will say it does work and as Beth says quickly.  The one point is when using O2 is to attack quickly when possible.  Obviously if the beast hits in the night then you are awakened at what ever kip you are, but if during the day and you feel the beast coming on then hit the O2. Good luck and I pray you get one of those cancellation and as Barb said tell the neuro if he doesn't prescribe you anything else, prescribe O2 indefinitely and a non-rebreather mask.  You can get the regulator on-line, ebay.  You must have at least 15 lpm, really 25 lpm is best. Wishbone.

OMG!  You are all the best!  I will go today and get the melatonin.  I can't sleep for shit!  I was up all night, slept part of today though.  The beast was roaring for quite a while last night.

I am feeling better today, don't want to kill anyone and don't feel so hopeless right now.  I see that you guys have been where I am and found a way to keep hopeful.  I wish you could see the tears of gratitude that I am shedding right now, words seem hollow for how I feel.  Your support and understanding is priceless to me.

My husband asked how I was feeling earlier and I mentioned to him that it isn't bad until around 7:30pm usually.  He told me "Don't "expect" it!" HA! I will be sending him here to read and learn as well as try to explain what little I understand at this time myself.

I will be seeing my GP next week and bring him info on the O2 so that he will give me the scrip for it.  He is great, I am sure I won't have trouble getting it from him.

Gotta run to a birthday party for a friend.  Picking up Red Bulls while I'm out! Thank you all again, will be back tonight to browse to great advise and encouraging words.  Hey, did you guys see that the chat room is open?
I love you guys!
Kathleen

You're developing a great attitude. Don't let the beast run your life, keep your meds at the ready and live your life between the hits. You'll be just fine! (Make sure you get the 02! Just the sight of that little green tank in the corner keeps me relaxed knowing it won't beat me!)

Guiseppi