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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Re: Please read, I'm desperate
        
(Message started by: LeLimey on Oct 23^rd, 2005, 3:13pm)

Title: Re: Please read, I'm desperate
Post by LeLimey on Oct 23^rd, 2005, 3:13pm

Hi Jason, bear with us. I'm trying to contact a friend who has clusters who lives near Tampa right now who might be able to help with doctor info etc.

Title: Re: Please read, I'm desperate
Post by zanychef on Oct 23^rd, 2005, 3:18pm

hi jason sorry you had to find us but glad you are here
the ouch website has some useful links to help with meds in the U.S or ask one of them they know
if you need help just holler
zany
p.s. have you tried verapamil as prevent?

Title: Re: Please read, I'm desperate
Post by LeLimey on Oct 23^rd, 2005, 3:20pm

Have you tried verapamil? alot of people have had success with that. I know you've tried BP meds etc so it makes it a bit difficult to suggest things I've tried. A full list of what you have tried would be helpful.

With O2 I would recommend a mask from here www.clustermasx.com as being above price. I can't begin to tell you the difference it has made to me. Its given me my life back and helps me abort in double quick time. I can abort in 5 - 7 minutes but then stay on the o2 at a lower flow rate for another five minutes just to make sure it dosn't come back.. but the pain is gone. Thats my "coming back to being me" time.

Bearing in mind you haven't any insurance you might want to consider the alternative therapies such as kudzu, there are a few threads about it at the top of the medications board under this one or there is also www.clusterbusters.com

Finally now that you've found us keep in touch, let us know how you are doing. There are some really really clever people here who will help you alot so ask all the questions you like
Its nice to meet you, just wish it wasn't here :-/
PFDAN's to you
Helen

Title: Re: Please read, I'm desperate
Post by jcmquix on Oct 23^rd, 2005, 3:33pm

Hi Jason..

It's nice to meet you, Sorry its this way though.. I live in Bradenton.. about 50 miles south of you...

Looks like you are sorta on the right track, but I think you need to find a Different Dr... I understand what you are saying about the Insurance and the Dr thing... You will just have to do some homework and alot of calling around.. ok I don't have the number, but I heard that you can call the National Headache Foundation and they will give you a list of Dr's that treat CH in the Tampa area.. Try that.. I will also do some searching later..

In the Mean time, yes.. try to get the Non-rebreather mask for the O2, It takes a little time using the O2 to stop an attack, it took me about 3 days to learn the breathing...

Now if you are trying the TREX, the only thing I found that works is the TREX inj. If you get them, I can help you break them Down to last longer... ok..

The next thing is that you are going to have to do alot of reading here, get yourself informed and get this information printed and to your Dr...Also check into the Alternate Treatments, but do plenty of reading before you try any of them and consult the people here who use them...

May ADVICE.. I know its Tough, I just got through one of the worst cycle's of my life, I was ready to give up and end it all when I showed up here....

Make contact with someone here on the site, this place has plenty of support to help you through the tough times, I can help you or you my Choose someone else, but keep in touch, wee can get you through the tough times.. when the meds are not working or when you are feeling down..

Ok I am going to go for now, gotta take care of some Hurricane stuff, i will be back in about an hour.. ok.. and I will post more help..

God Bless Ya
Charlie

Title: Re: Please read, I'm desperate
Post by pattik on Oct 23^rd, 2005, 3:36pm

Hi Jason, I would like to reiterate what Helen said about O2. This works most of the time for me, and it is also one of the least expensive methods to abort. I haven't been successful with preventatives, so I can't help you with that. I'm certain that the members here can help you connect with a doctor who will have more knowledge of CH. Meanwhile, continue to gather information at this site, and feel free to post questions. Welcome to the board.
Pat

Title: Re: Please read, I'm desperate
Post by jason1212 on Oct 23^rd, 2005, 4:49pm

WOW, I never expected to recieve replies so quickly, you guys are awesome, I already feel at home here. I have never tried verapamil I will ask my Dr. about it. As far as the drugs I have tried, let's see if I can remember them all: Inderal, Topomax, Relpax, Depakote there are others but I can't remember them all. I have started to keep a journal recording everything I try (better late than never). Topomax worked well but then I found out I'm allergic to it. Now my Dr. perscribes Lexapro which is an anti-deprssant, I don't know what to think about that. I have read all of your responses and will follow all of your advice. Thank you guys so much I can't begin to tell you how much it means to me. I no longer feel so alone in this battle and that is worth so much to me.

Title: Re: Please read, I'm desperate
Post by LeLimey on Oct 23^rd, 2005, 5:13pm

Hi again Jason, the magic of this place is in the support and we have lots of it!
Charlie asked me to tell you he is having huge connection probs at the moment due to Wilma but he will get back to you as soon as he can.

I tried topomax recently and it was about as much use as a cloth crash helmet to me. Verapamil works very well for an awful lot of people. I would hazard a guess its the most commonly used successful preventative.

The O2 if used properly is awesome, there is lots to read about it here, the flow rate and the right mask is critical though and that can't be emphasised enough. Talk to Mr Happy about o2 and regulators etc, he is a very knowledgable and only slightly perverted guy! ;)
Keep reading and asking questions
Helen

Title: Re: Please read, I'm desperate
Post by jcmquix on Oct 23^rd, 2005, 9:11pm

Hi Jason..

Its me again.. Sorry as Helen said I am having a real problem getting my links working and the net keeps cutting out on me, I will try to get things going over the next few days..

In the mean time, You just need to Read, Read & Read some more, I know thats not what alot of people want to hear, but there is Many, many years of experience here in dealing with CH.. If you have any Questions or Problems just post.. and as you can see someone will come along before to long and try to help and/or answer your questions..

Like I said I am only about 60 miles from you, so we might hook up sometime when we are in Tampa.. We go to Busch Gardens about once a month, just to get away..

Hope you find some PF time my Friend...

God Bless ya & Stay Safe
Charlie

Title: Re: Please read, I'm desperate
Post by BMoneeTheMoneeMan on Oct 23^rd, 2005, 10:13pm

Welcome Jason, sorry you are having such a tough time.
The biggest asset this site has is an abundance of information, and information can lead to relief.
pain free wishes
BMonee

Title: Re: Please read, I'm desperate
Post by burnt-toast on Oct 25^th, 2005, 5:19am

Verapamil, Lithium and Melatonin are fairly standard and reasonably effective preventatives. They're relatively inexpensive options for folks paying their own way through treatment.

I'd recommed discussing these and other options you find on the site with a Neuro. Work through some of them to see if they work for you. If they do, you can get your monthly costs down.

Good Luck and Best Wishes

Tom

Title: Re: Please read, I'm desperate
Post by maffumatt on Oct 25^th, 2005, 9:26am

http://www.clusterbusters.com/

Title: Re: Please read, I'm desperate
Post by Jasmyn on Oct 25^th, 2005, 1:17pm

Hi Jason!

Welcome to the best place for a Clusterhead in the world.

Jas ;)

Title: Re: Please read, I'm desperate
Post by kyt on Oct 30^th, 2005, 8:24am

Jason I read your letter and was saddened to hear that your doctor a person you put so m uch aith into for helping you rid the pain has no interest in doing so. I have been a cluster sufferer for so long now I lost track of the years and in my life as well has caused many problems. I know of a Doc out of Colorado who might be able to help you. If she is still in practice she may be able to help if not maybe some collegues can point you in the right direction down there in Tampa. She is from Czecholslovakia so she has a thick accent her practice was in Denver, Colorado....at the childrens hospital...don't let that stray you because she is AWESOME!

her name ... Eva Sujansky.... it may be a long shot but hey it is always worth a shot.

kyt

Title: Re: Please read, I'm desperate
Post by FrankF on Oct 30^th, 2005, 8:35pm

I use verapamil 240mg twice a day and Melatonin 9mg at night.. Those two work most days (except an hour after melatonin I can't stay awake for dinner). I usually go for the O2 which works wonders... or have to use Imitrex injections for the really bad ones (Kip 8-10). Fortunately my cycle is almost ended after five months.