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Dan

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new 2 sight and fed up with the pain
Nov 10^th, 2008 at 10:29am

Hi ev 1, my name is Dan and i live in U.K. I have suffered with ch for approx 8 years now but was only diagnosed with them a couple of years back.....I suffer from ch from around october through to march/april time, last year i was put onto Verapamil and sumatriptan injections which worked a treat....i could count the amount of attacks i had on one hand. Unfourtunatly though they have returned with a vengance this year and the medication just is't working, im having numerous attacks per day. Saw my doc today and they are putting me onto Lythium, i was just wondering if any of you have tried this and if you had any success with it???? Anyway just thought i would say hi and hopefully find some support from people who know what im going through at this present time....thanks.

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Just Plain Carl

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Re: new 2 sight and fed up with the pain
Reply #1 - Nov 10^th, 2008 at 10:36am

Hello Dan,
welcome to our house. sorry you are having a hard time right now.

I have tried Lithium in the past with no results, however, it was several years ago. Presently I use Prednisone and Verapamil. Prednisone for ten days to tame the beast while the verapamil takes hold.

Just recently started with Oxygen. It was the miracle abortive.

I'm sure the good people here will have much more info for ya.

Good PF Luck
JPC

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Dan CH.com Newbie Offline I Love CH.com! Posts: 14 Kent, England Gender:	Re: new 2 sight and fed up with the pain Reply #2 - Nov 10^th, 2008 at 10:47am Thank you JPC for the words....I was in hospital last night with an attack, it was the first time I had been given 02, it did't seem to make much of a difference, but maybe that was because I was in the middle of an attack at the time????
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DennisM1045

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Re: new 2 sight and fed up with the pain
Reply #3 - Nov 10^th, 2008 at 11:52am

Welcom Dan! I'm happy you found us.

Sounds like you have an informed Doctor there.

Dan wrote on Nov 10^th, 2008 at 10:47am:

Thank you JPC for the words....I was in hospital last night with an attack, it was the first time I had been given 02, it did't seem to make much of a difference, but maybe that was because I was in the middle of an attack at the time????

For oxygen therapy to be effective you need to get on it quickly. Getting on once the hit has progress is hit or miss.

The flow rate needs to be at least 15lpm or higher. You also need to use a non-rebreather mask (they type with a bag) and make sure the valves on the outside are closed off. The key is getting 100% oxygen with no room air.

Often lack of results with O2 are simply a matter of tactics and technique. Having said that, it still only works for 70% of us. Wish that it were more.

Good luck...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Dan

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Re: new 2 sight and fed up with the pain
Reply #4 - Nov 10^th, 2008 at 12:07pm

Hi Dennis and thank you 4 the advise on the 02 front....luckily for me my GP and nuerologist are both bang on when it has come to helping me with this nightmare.....i just feel for those that i have read about on this website that have not been so lucky...hopefully this new treatment might do some good, luckily 4 me i also have a stash of imitrex to help, although i have been getting alot of rebounds with it over the last couple of weeks....but hey must stay strong and hope things work out, and i'll try and get some 02 for indoors the next time i visit the doc next week. Once again many thanks...

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Squirrel

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Re: new 2 sight and fed up with the pain
Reply #5 - Nov 10^th, 2008 at 12:17pm

Hey Everybody. I have some updates on my husband's CHs that I thought I would share. Some ideas you may have already heard of, but I always think it's good to hear about what works/doesn't work for others. He has seen some improvement, but I'm not sure which method to be grateful for as he started a few together. Who knows, maybe he's just ending a cycle. First of all, he's been on amitriptyline for over a month now - just increase his dosage to 80 mg/day. His current doc also has him taking Flova instead of Imitrix - doesn't seem to have the rebound like in the past. Third, he started trying the water x 3 treatment listed on the left hand side of this page. The O2 definately helps - but make sure you use it as described in this thread as most doctors don't understand how specific it needs to be. I don't care what works, as long as it does. His last cycle started in the middle of September and needs to be done!

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BMoneeTheMoneeMan

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Re: new 2 sight and fed up with the pain
Reply #6 - Nov 10^th, 2008 at 1:02pm

It sounds like your doc is doing a good job. I have heard of some people taking lithium for CH, with decent success. I have never taken it.
Sumatriptan is a good choice, though a hard drug on the body/heart. I use O2 as my main abortive and only use the shots occasionally. 15LPM of O2 may cut it, but 25-30lpm+ is more ideal. Lots of air, fast, is the best way to use O2. Only on a non-rebreather mask with reservoir bag!!!

Good luck, and welcome
B$

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"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&

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CH-HELL

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Re: new 2 sight and fed up with the pain
Reply #7 - Nov 10^th, 2008 at 3:57pm

Welcome sounds like you have the right aditude witch is important, you've already been given good advise so I'll just answer the lithium question. I took litium a few years back with great success, it seemed to stop that cycle within a week, its been awhile but I belive I was taking 900mg a day. I stopped taking because I couldn't keep up on the routine blood test my doctor said I needed, Hope it works for you, Phil

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RichardN CH.com Hall of Famer Offline Posts: 963 x1\|Crossville\|USA,Tn Gender:	Re: new 2 sight and fed up with the pain Reply #8 - Nov 10^th, 2008 at 4:10pm Hi Dan & Welcome to Clusterville When you see your doc, have him fill out a H.O.O.F. form (home oxygen order form) . . . your GHS covers it and they'll deliver to your home. I'm sure Helen (LeLimey) will be along shortly for more info in dealing with the UK health system. Be Safe, PFDNs Richard
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Linda_Howell

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Re: new 2 sight and fed up with the pain
Reply #9 - Nov 10^th, 2008 at 5:58pm

Lithium is a preventative and lots of folks here are helped by it. I hope that is the case for you also. It may take a while to start working so don't give up.

The triptans are great but if you take too much they could be giving you rebounds so keep that in mind.

Please about getting oxygen at home. Like Dennis already told you, getting on the 02 at the very first hint of an attack is crucial.

Linda

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Hurt people.....hurt people. Think about it.

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thebbz Ex Member	Re: new 2 sight and fed up with the pain Reply #10 - Nov 10^th, 2008 at 7:55pm Another limey jeezzz. Kidding my friend. Welcome,you have gotten good treatment and advice. all the best the bb
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Guiseppi

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Re: new 2 sight and fed up with the pain
Reply #11 - Nov 11^th, 2008 at 11:07pm

I use lithium as my prevent, I'm male, 48, episodic, usually 2 cycles a year! I take 1200 mg a day while on cycle, blocks about 80% of my attacks. But it take close to 2 weeks for it to become effective. I do a 2 week prednisone taper while I'm waiting for the lithium to kick up. Oxygen and the RARE imitrex injectable can usually keep the beast in check. Hang in there and welcome to the nut house!

Guiseppi

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Dan

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Re: new 2 sight and fed up with the pain
Reply #12 - Nov 12^th, 2008 at 3:57am

just like to say thankyou too you all for your support, it means alot at the moment.
Started on lithium yesterday, and hopefully this will take effect soon, only had an hours sleep last night, it woke me with a k8, injectable was no good by then, had no effect what so ever.
It's 8.54 am at present and have just had another hit, thankefully it only lasted for 30 min.
Another day off work, that's 3 in a row now.
Again thankyou so much for your words of support and advice.

Dan

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