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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> I am a new man on the block
        
(Message started by: Tom_Thumb on Jan 17^th, 2005, 2:12pm)

Title: I am a new man on the block
Post by Tom_Thumb on Jan 17^th, 2005, 2:12pm

Hi I have read alot of things on this sight and love all of it . My name is Wayne and I am 42 years old . I have had ch since i was 28 . The last time was in 2002 from oct. to jan. 30 . Now on Jan 8 they are back and I mean back .I have been getting hit about 10:00 pm then at 3:30 am everynight . I have taking every kind from meds that you all have suggested .I HAVE BEEN LIVING IN HELL . I did go to the doctor today . He started me on VERAPAMIL / NEURONTIN / FIOFICET an the greatest 02 / an IMITREX . Now I will have to start the fight with that beast that thinks that he can win . I am new to this so work with me . I think that I have lot of support to offer and will need it from all of you .

Title: Re: I am a new man on the block
Post by guesst on Jan 17^th, 2005, 2:21pm

Have you tried melatonin?

Title: Re: I am a new man on the block
Post by nani on Jan 17^th, 2005, 2:42pm

Hi Wayne...welcome and sorry you're having such a hard time. It sounds like your on the right track medication wise. I (and many others) also use lithium as a prevent. It's unlikely the Fioricet will help much. I'm curious- how are you taking the Neurontin? For years I used it only for hits, then found it to be a pretty good prevent. I take 600 mgs 2Xday and 600 mgs 3X a day during an episode. I'm a chronic with occasional severe episodes.Guesst is right about melatonin...it helps many here with nighttime hits. There's a lot of info here, read as much as you can. Pain free wishes to you, nani

Title: Re: I am a new man on the block
Post by BlueMeanie on Jan 17^th, 2005, 2:56pm

TomThumb,

Looks like you're on the right track. Hang in there. It's rough, but as you know, ya gotta keep fighting the Beast with everything you got. Not sure which Imitrex the doc gave you, but the shots work the fastest. Check the Imitrex tip to the left if that's what you have.

Vibes & welcome to the madhouse. [smiley=laugh.gif]

Title: Re: I am a new man on the block
Post by Tom_Thumb on Jan 17^th, 2005, 2:59pm

I tried melatonin in the past but it makes me so tired that i fill like doing nothing . I may have to go for it if I do not get some sleep some . Thanks for the thought. For the fioficet I find that 1 every 8 hours helps with the pain for the intensty affect . For the neurontin i take 300mgs A Day that most of the time helps break the cycle . But for now I DONOT know what anything is going to do at this point . This is my 1st day with meds.

Title: Re: I am a new man on the block
Post by Tom_Thumb on Jan 17^th, 2005, 3:05pm

I am taking the 20mg nasal spray . I can not get the doctor to give the shot to me . He thinks that if I need a shot i should go to the ER .

Title: Re: I am a new man on the block
Post by nani on Jan 17^th, 2005, 3:10pm

You should take the melatonin about 30 mins before you go to bed. You may want to talk to the doc about upping the Neurontin and adding lithium. Ask the dr what purpose would be served by you going to the ER every time you get hit hard. I really can't say I understand that logic. [smiley=huh.gif] They made the shots so people could treat themselves. Just my [smiley=twocents.gif] PF wishes, nani

Title: Re: I am a new man on the block
Post by guesst on Jan 17^th, 2005, 3:13pm

on 01/17/05 at 15:05:55, Tom_Thumb wrote:

I can not get the doctor to give the shot to me . He thinks that if I need a shot i should go to the ER .

Have your doctor call me, so's I can edumacate him on how to treat patients with clusters. >:( >:( >:( >:(

Title: Re: I am a new man on the block
Post by Margi on Jan 17^th, 2005, 3:18pm

Hi Tom,
That fioricet isn't going to help you, friend. It can be addictive and can cause more headaches. Please be careful with it.

What flow rate does your O2 regulator go to and what kind of mask do you have? You need a flow regulator that will go higher than 8 litres per minute (most folks find around 10 lpm works well) and a non-rebreather mask. Docs are famous for prescribing those stupid nose canule thingies and a lower flow rate. All that does is frustrate most clusterheads!! Make sure you're getting on the oxygen at the first sign of attack. There's a window of opportunity there and, if you miss it, chances are you might just be wasting oxygen.

If melatonin doesn't agree with you, you could try generic benadryl before bed, or generic dramamine (motion sickness pills). Both will not allow you to get into REM sleep which is where most night time attacks occur. You shouldn't really feel all that drowsy the next day after either one of these OTC meds.

Title: Re: I am a new man on the block
Post by Kris_in_SJ on Jan 17^th, 2005, 8:15pm

Hi Tom,

Good advice above. Both Verapamil (480mg/day) and Imitrex injects have saved me the last couple cycles. I haven't tried oxygen, but mainly because the Trex works so well.

I haven't heard anything here about Prednisone. Taken for short term, starting high and tapering down in dose, it works well for me until the Verap has had a chance to kick in. In fact, it often kicks the old beast in the ass altogether for a week or so.

Just one more suggestion to throw in the mix.

Keep posting. PFDAN to you!

Kris

Title: This worked for me!
Post by sindee on Jan 18^th, 2005, 7:59am

Hey, as soon as I woke up this morning I knew I had to share this with as many of you as I could! I was getting my clusters every two hours a night, exhausting and painful to say the least! This is the first time I have had them with no medical insurance. It cost 74.00 for the doctor and 56.oo for two doses of nasal Imatrex which did nothng for me!
Out of desperation, I went onto WEB MD and typed in cluster headaches and found a link to a site www.sinusbusters.com. It is hosted by a gentleman who suffered through severe clusters for 15 years, was sprayed with pepper spray on the Ophra show and realized that his cluster ceased immediately. So he develped a nasal spray which contains pepper and other natural ingredients. For 12.00 a bottle, heck ya I would try it!
Well, it is my second night with no cluster attacks! It is a nasal spray, and on the onset of the cluster I just laid back on my pillow and squirted a small amount into my right nasal and let it run back into my throat. Yes it has a bite, but it stopped that head ache and I have had no more!
I just had to share this with you all because for me it is a great discovery! But beware, the first time I used it, I was desperate, used to much and let me tell you...it truly has a bite. But it worked! It worked! It worked! Thank you Lord! Good luck everyone! Sindee

Title: Re: I am a new man on the block
Post by nani on Jan 18^th, 2005, 9:51am

Tom...ignore the sinus buster info...it doesn't work.

Title: Re: I am a new man on the block
Post by maureen on Jan 18^th, 2005, 8:07pm

Hello Tom, I to am new to the site but not to CH I have had them for 19 yrs and finding this site was the best. The people here are wonderful, supportive and very helpful with info. Already feels like a family.
Welcome Wishing you PFNAD's Maureen

Title: Re: I am a new man on the block
Post by dagger on Jan 18^th, 2005, 9:42pm

Hey Tom Thumb - I used the 20mg spray with good results and then tried 5 mg with equally good results. You may want to try that because you can use it more often. I liked not putting as much inside me because of the possible negative side effects.

Title: Re: I am a new man on the block
Post by painkiller on Jan 20^th, 2005, 9:15am

Hi Tom Thumb, ask your doc about prednisone, it breaks my cycle every time in about a week but the hits are much less severe as soon as i stsrt taking them... by the way i've tried melatonin because a lot of people here have had success with it but i on the other hand had the worst hits in my 15 year history using it so be careful. hope your meds ring you lasting pain free days!!! Painkiller.