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        New Message Board Archives >> 2002 Posts >> Hi there
        
(Message started by: gordon70 on Aug 22^nd, 2002, 10:31am)

Title: Hi there
Post by gordon70 on Aug 22^nd, 2002, 10:31am

Hi just signed on as new user. Suffered from cluster headached for past few years.. Usually get them for about a month twice a year. Its like having a continuous headach that spikes 3 or 4 times a day. Been to dr. all they prescribe is lortab or oxycottin.. don't really know what to do. Tried imitrex, it didn't help that much. It just so debilitating when they hit full force. All on left side of my head..right behind my eyeball..even my teeth hurt...and all the way down my neck. I get nauseaus. slurred speech and and blurry vision.

One thing I do is put ice on my head with preasure. That helps somewhat.

Anyone got any more ideas.

This sounds like a great website..It seems Dr's really don't know how to deal with this.

Title: Re: Hi there
Post by oringkid on Aug 22^nd, 2002, 10:38am

Welcome! This is the best site for CH's We have lots of info, (see buttons on side) Check out the cluster quiz and the OUCH website.

Sherry

Title: Re: Hi there
Post by Svenn on Aug 22^nd, 2002, 10:39am

Hi There

Welcome to Clusterville.
Here you will find almost everything you want to know.A lot of friends that really are dedicated to help a fellow clusterhead.Hope you will find what you are looking for.

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Svenn

Title: Re: Hi there
Post by gordon70 on Aug 22^nd, 2002, 11:30am

Thanks Svenn..I will check on that..One Doc I went to suggested oxygen but I would have to come to his office at the onset of an attack..Thats asking a lot. Is there anything you do preventively?

Title: Re: Hi there
Post by Not4Hire on Aug 22^nd, 2002, 11:49am

hey Gordon.....seems like I've been posting these links a lot lately, but o2 DOES work as an abortive...you'll need a prescription from your doctor. Lot's of preventatives used by folks here...push them buttons at left.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1025929622;start=6

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1014270746;start=2

Good luck.......

Title: Re: Hi there
Post by Jim R on Aug 22^nd, 2002, 11:53am

Hi Gordon 70, and welcome.

You should not have to go to a doc's office to imbibe O2 - you can have a tank right in your home along with the mask. I am sure most of us here that use it (and we are legion) have home O2 tanks. Verapamil is main drug for control of CH. I am on this and lithium, another main prophylcatic drug. Narcotics only mask the pain when one breaks through the prophylactic agent, however, sometimes particularly with a really severe attack, that masking ability is a Godsend. Many others here use imitrex or other triptans (vasoconstrictors). Everyone seems to have what works best for them or are in the process of trying to find out what works. I wish you good luck in dealing with this affliction, and again welcome - it's a good place to be where others exactly understand what you're going through. - PFDANs to you. Jim R

Title: Re: Hi there
Post by nancyc on Aug 22^nd, 2002, 12:12pm

Hi Gordon ;D, alot of folks here use verapamil 480mg as a preventative..may want to ask your doc about this...side effects are minimal to most folks...good luck and welcome to ch.com... ;Dnancyc

Title: Re: Hi there
Post by gtar_man on Aug 22^nd, 2002, 1:01pm

Hi Gordon - don't be afraid to come here and rant - we all do when we're hurtin'.
Docs like to prescribe the "drug du jour" for what ails you and get you the hell out of the exam room. Since most of em don't know diddley about CH, you'll need to find one that actually gives a crap.
What works for some doesn't for others, for example, oxygen doesn't work for me, nor verapamil, but then I'm chronic, not episodic.
And if nothing in conventional pharmacology works for you, there is an alternative treatment you can try ;) :-X.
Just requst the information and someone will pass it along... G-man

Title: Re: Hi there
Post by gordon70 on Aug 22^nd, 2002, 1:44pm

Thanks for all the information guys..I sometimes think that the Doctors are suspicious of your symptoms and don't understand them. One Dr. I had said he had only heard of 3 other people in his 25 yrs of practice who displayed these symptoms. I find it hard to believe.

My ex wife couldn't understand the pain I was in and very few people I know do understand...everyone thinks of them as general migraines but I don't think of it like that.

I did take prednisone one time and that seemed to help but it makes you so ravenous for food all the time.

I will look at the O2 scenario however.

Thanks again

Title: Re: Hi there
Post by Drk^Angel on Aug 22^nd, 2002, 5:04pm

Welcome to the board! Sorry that the beast is stickin' your head in a particle accelerator, and smashing the atoms in your cranium into a bunch of disjointed subatomic particles. Welcome to the board!

PFDAN.................... Drk^Angel

Title: Re: Hi there
Post by 2late on Aug 24^th, 2002, 10:30am

welcome Gordo!!!! not sure what form of immitrex you've tried,the nasal spray & pills did nothin' for me.immitrex injections work well for me don't know where i'd be without it!! also 02 is a lifesaver......check it out. ................2late

Title: Re: Hi there
Post by debbie4278 on Aug 24^th, 2002, 11:01am

Hi Gordan.
I just made JUNIOR!
Welcome.
I'm on procardia as a preventative. My new neuro doesn't seem to be familiar with CH. So I didn't trust his suggestion to switch to Verapimil 80 mg a day.
The procardia works for me so why switch, especially to what seems like a low dose.
I have learned alot here at this site and am so happy to have found others who understand.
Best of luck.
Deb

Title: Re: Hi there
Post by catlind on Aug 24^th, 2002, 11:24am

Welcome aboard Gordon, sorry you have to serve time with us in Clusterville.

Prednisone is one of the things that worked for me to break a 9 month cycle, but it's a NASTY medication. My opinion is that's a very last resort. O2 is your best bet, do whatever it takes to get it in your home.

I take Celexa as a preventative (none of the others are suitable for me because of other heart related issues) and it's been fairly successful, I just shouldn't have stopped taking it then I wouldn't be back in cycle now LOL.

Many a doc have looked at me as drug seeking, and the list of folks living here in clusterville have had that same experience. You're not alone.

Cat

Title: Re: Hi there
Post by NancyMcFree on Aug 24^th, 2002, 11:29am

Welcome Gordon. I use the Imitrex injections (the nasal spray took way to long to abort the headache ... the injection works wonders for me). I also use the oxygen at home as well for an abortive. I take verapamil as well. Hope you find someting that works for you.

Title: Re: Hi there
Post by RichardN on Aug 24^th, 2002, 8:47pm

Hi Gordon and welcome

Found this asylum in Feb........Like many others here, had MRI, CAtscan, non-working meds, LOTS OF PAIN, but didn't find a NAME for the pain and relief for same til coming here. I am chronic and currently taking Verapamil SA, 360 mg per day as preventative, and 02 as abortive (keep an E tank by the bed and carry a B tank with me). Also water/water/water. Have been relatively PF the last couple of months...........some fairly regular shadows that the 02 knocks out . Have had a few (4-5) KIP 5-7s in last week or so (one of those the result of 5 oz of wine.....bad idea), but nothing like the 6-8 per day KIP 5-9s I was having when I got here. I have a life again
Read, read, read and copy info and take to your doc........try the 02........works for most . Verapamil (SA, not the capsule version Verrelan which is more than twice as expensive and possibly not as effective) has minor side effects (mainly constipation) easily handled by diet.
Try and identify triggers. Alchohol was definitely one for me, but not for everyone. We're all different, and what works for one might not for another.
Keep us posted.......there's always someone awake here.
PFDANs Richard

Title: Re: Hi there
Post by Ann on Aug 25^th, 2002, 8:05am

Welcome Gordon. Sorry you had to find us. I use verapamil 360 mg regular release as a preventative. when in cycle I use imitrex injections and one amerge before bedtime. It has helped me. Good luck. If this doc won't listen, find one who will. No one needs to suffer needlessly!

hugs
Ann

Title: Re: Hi there
Post by don on Aug 25^th, 2002, 10:36am

Afgter pushing all the buttons and doing your research, I think the first thing you will realize is you need a new Doc. Preferably a neuro who has some CH education.

Oxycontin for CH ?

Title: Re: Hi there
Post by BobG on Aug 25^th, 2002, 11:47am

I agree with don on this. Pain killers are not the thing for cluster headaches. Try to get a referral to a neurologist.

You mention that your doctor has seen 3 clusterheads in 25 years and you think that is a low number. It may not be. This is a rare condition and it may be that he has seen more than most doctors. I have mentioned cluster headaches to my doctor (I am not in a cycle at this time) just so it would at least be in my records. He told me that he has heard of the condition but in more than 20 years of practice he has never had a cluster patient.

Title: Re: Hi there
Post by Charlie on Aug 25^th, 2002, 7:13pm

Welcome Gordon and read read read. You WILL find something here that will help you in some fashion. Most of us do.

25 years seems long enough to have seen more than 3 cases of CH. I've had great luck with neurologists. I have epilepsy as well and know a good one when I see him. Mine, who is in his 30s, says he treats many CHers. Jamestown is a small town with three neurologists, all of whom know about CH but the other two are iffy at best. One wanted to do exploratory surgery to make sure I wasn't suffering from some other horror. All I wanted was a prescription for Inderal which worked well for me. Sadly this barber is still practicing.

I was amazed that everyone I talked to in our ER, nurses, doctors, and PAs had some idea what CH is and one seemed to know a great deal. What is it about this town? At least something is right here. I wish everyone had the same experience. Here's a link to a technique I used with great success:

http://www.chhelp.org/circ.html

Stick around and let us know how you’re doing.

Charlie