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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New guy on the block
        
(Message started by: tommy123 on Mar 31^st, 2007, 2:11pm)

Title: New guy on the block
Post by tommy123 on Mar 31^st, 2007, 2:11pm

Just joined the group today, and didnt realize there were so many that are afflicted with this condition. Cant seem to say that about the medical community.. Asked my opthamalogist about it.. (this started under his care) and got the old deer in the headlites look.. Well, he knows it now.. He should have.. seeing as how the eye is affected.. phew.. These damned attacks can knock one down to the floor.. if you dont put your head thru the wall first.. all I can do is sit and grunt or pace if it would help , but it dont.. Wife knows not to interfere.. Sound and Light sensitive.. Ive been to 2 different neuros, and have had mixed results.. one claims to be able to cure it.. (heavy drug use) the other claims "its genetic.. Ill punch your t.s. ticket, try these pills or oxygen.. have had good luck with a product called "head-on" gets rid of the attack in about 5 to 10 minutes.. or sometimes use 2 cups of hot black coffee.. dependng on the time of day.. Not at night, or Im up all night.. Man this has been one helluva rollercoaster ride.

Title: Re: New guy on the block
Post by chrisw on Mar 31^st, 2007, 3:00pm

try the o2. It really can work wonders. also, ask about triptans, imitrex injections will kill an attack in a few min., but the pills take too long to work. those are just a few ways to abort an attack, also you need to try to prevent them also.

hang in there,
chrisw

Title: Re: New guy on the block
Post by Lobster on Mar 31^st, 2007, 4:40pm

Agreed with Chris.
Lots of aborts.
Lots of preventatives.

An effective short-term prevent is Prednisone. You might consider trying that while you get your longer-term game plan together.

Read up on Oxygen & Imitrex (or the other triptans) as good starter aborts.

Title: Re: New guy on the block
Post by ClusterChuck on Mar 31^st, 2007, 4:55pm

on 03/31/07 at 14:11:37, tommy123 wrote:

have had good luck with a product called "head-on" gets rid of the attack in about 5 to 10 minutes..

I am sorry we have to welcome you. But if you have Cluster Headaches, this IS the place to be. Welcome!

I am VERY curious about this product .. What is it? Is it OTC?

Caffine is a great help to many of us. Maybe you have seen some of the threads about Red Bull .. It is basically the caffine and taurine that help. You might try that as an abortive.

As the others have said, try the oxygen, it is a life saver for most of us. BUT, it must be used properly. See the tab on the left, called "oxygen info" for the particulars.

Good luck, and ask any questions you may have. Most of us know more than the doctors do about this.

Again, welcome aboard the good ship Clusters ...

Chuck

Title: Re: New guy on the block
Post by tommy123 on Mar 31^st, 2007, 5:06pm

Well, have used prednisone before with not very good results.. did not seem to help at all. Latest neuro has put me on verapamil.. also trying maxalt..mlt . doesnt promise too much.. just getting the package open is enuf to drive you crazy.. besides didnt work.. disolves on tongue, and is supposed to kill the attack.. harump.. no luck there either.. sticking to head on and caffeine.. and another neuro..

Title: Re: New guy on the block
Post by ClusterChuck on Mar 31^st, 2007, 5:13pm

Verapamil is a great preventative for many of us. It DOES take a week or more to be effective though. And what level verap do you take? Some of us take around 900 mg before it works.

Chuck

Title: Re: New guy on the block
Post by tommy123 on Mar 31^st, 2007, 5:22pm

the Headon is otc.. get the migraine type.. saw it on tv, and picked it up at a walgreens pharmacy.. about 7 bucks .. 100 applications.. so they say.. its just rubbed on the forehead, in the pain area.. hey.. works for me.. this has aborted some when the devil starts warming up the band. my neuro and his nurse wasnt aware of this product homeopathic

Title: Re: New guy on the block
Post by Guiseppi on Mar 31^st, 2007, 5:22pm

The neuro who suggests verapamil is at least on the right page. I'll give you my gamut just for contrast and comparison. I'm episodic, when I go on cycle, I go on a prednisone taper starting at 80 mg and tapering down over 2 weeks. I start lithium racking up to 1200 mg a day. (I'm male, 47, weigh about 190). After 2 -3 weeks the lithium is ramped up and blocks most of the HA's.

For abortives I use oxygen first with, oral cafergot. (I have to take cafergot when I start oxygen or the headache returns 10 minutes after the oxygen stops most don't have that problem. ) I use imitrex injectables when all else fails. It's just one regimen, there are many many others. Try and get oxygen prescribed and read the link on how to use it. A borderline miracle fix for many of us. Welcome to the board.

Guiseppi

Title: Re: New guy on the block
Post by tommy123 on Mar 31^st, 2007, 5:24pm

neuro had me on 80 mgs, at first.. now up to 180 mgs.. maybe this will work.. thanks everybody for the info..

Title: Re: New guy on the block
Post by ClusterChuck on Mar 31^st, 2007, 5:38pm

on 03/31/07 at 17:24:21, tommy123 wrote:

neuro had me on 80 mgs, at first.. now up to 180 mgs.. maybe this will work.. thanks everybody for the info..

Those are VERY low levels of verap. Maybe it will work. I hope so!

Good luck!

Chuck

Title: Re: New guy on the block
Post by vermonster on Mar 31^st, 2007, 10:52pm

I wouldn't advise leaving the medical providers, but I will tell you that none of them ever helped me. O2 was my first real relief for aborting attacks, and since then, I've found what works for me, after 14 straight months of suffering.
The drugs could make matters worse for me, and I didn't like taking them anyway - so I've been trying all kinds of remedy for a while now, but I'm back on the board leaving the great news that I have finally won and believe I will NEVER have another cluster again. My head has never felt this clear.
I feel for you and know what you're going through. Don't give up on this board. If one suggestion doesn't do it for you, try the next. It's a great site full of great people like yourself and through this network of suffering, your answer will come. Hang in there.
Hold hands with this site; try, try and try again with any idea that you find here and give them time to work. I know how hard it is - but if you keep after it, things will get better.

Title: Re: New guy on the block
Post by tommy123 on Apr 1^st, 2007, 12:21am

really had not planned to move from the medical community.. just the neuro I was seeing.. He seemed to have a list , and if what I said didnt fit it.. it didnt occur.. like the question. "would stress be a trigger for an occurance of an attack? answer : mumble, mumble.. a case in point.. trip to the dentist.. 2 hours in a chair, removing old fillings, and replacing same.. + the light in my eyes from the dentist? Answer: well, there was no answer.. High marks for this jerk.. another case,, trip to the hospital for colonoscopy.. 2 hrs before.. 1 attack.. in the hospital.. just before the procedure , another attack.. asked the help with water while I downed 4 or 5 ibuprofen .. (one of my helps) seems they are not too hot on that.. wouldnt do it, wanted to scrub the procedure..if I took them.. told them , t.s. talk to the doc..if he says no go.. ok.. Im taking them anyway.. so it seems stress is a trigger for me.. but thats just me.. so light, and stress are two of my triggers.. but not according to this medico. Now will look for another, with brains about him/her. I now know what questions to ask when !st interview with a new neuro.. glad you got rid of yours.. still looking for mhy savior......

Title: Re: New guy on the block
Post by vermonster on Apr 1^st, 2007, 7:41am

I also ran into several in the medical field who just didn't know. One neurologist I saw knew what a CH was, and had one other person she treated from time to time, but she admitted that her patient had no relief. I guess that's the point; they don't know and as you can see on this board, what works for one, doesn't work for the other. My CH at first began when I went to sleep, but as the time went on, they were no longer predictable. I'd also get them in an instant if I overheated myself with activity on an already hot day. The point is too, that no one knows what causes them, and again, from what I read here, it's different for everyone. Stress and light didn't bother me, unless of course I was having a CH, and then light would make me feel as though I was at death's door. Some medications cause some big rebound CH's for some people, like they did for me, so I went after a solution that was non chemical; the 100% O2 was a godsend. And then later, the taurine, and now, it's a very clear link for me between coffee and chocolate, although it can't be the caffeine since I drink coke and it doesn't bother me. The pesticide use or tannin's in the beans, maybe.
I really hope you can find something that helps. Keep trying and hang in there. And if you want an inexpensive experiment, start taking at least 1000mg of taurine every day and see.. and get a script for the O2 (it's a very specific one; and the O2 isn't really expensive, either) other posts add the melatonin before bedtime and it works for them; but when I tried that, my CH's were just all the worse.
Prednisone worked for me the first round, but never did again. The beast seems to change form every time it visits and that's part of the problem, too!
Keep trying. I'll pray that you find a solution soon ! I feel guilty that I'm finally free, and I'm here reading about all the ongoing suffering!
Hang in there!

Title: Re: New guy on the block
Post by pieface_49 on Apr 1^st, 2007, 9:06am

Welcome Tommy123,
It is no wonder to me why the medical community has a difficult time diagnosing CH. There are about 30 documented types of facial pain and many of them have the same symptoms as CH. My Neuro kept wanting to classify me as TN. 4 years later after the first diagnosis of TN I went armed to my Neuro with info on Sphenopalatine Neuralgia. The symptoms are real close to CH. As usual she wanted to do all the talking and put me through the gamut of useless tests. I left the office with the Neuro classifying me with Trigeminal Neuralgia and scripts for Neurontin and Loricet Plus. I was dismayed to say the least. Five days later I found this site. I consider this site a blessing. I now believe I have CH. I won't be able to disapprove/approve it until my next cycle. I will go to the Neuro on April 9th. Hopefully, this time, the Neuro will be able to understand.
Hope your cycle is short and fleeing.

Title: Re: New guy on the block
Post by Rosybabe on Apr 4^th, 2007, 8:24pm

Hi Tommy!

Welcome aboard!!!

I never heard of Headon but we will try it too :D, here is about experimenting, all we want is to be pain free. ;;D

Title: Re: New guy on the block
Post by Callico on Apr 8^th, 2007, 12:23am

I'm not a dr, but I can tell you with certqinty that 180mg of verap won't cut the mustard. Most of us get up above 700mg/day before any relief. Personally I was on 960 and then added Lithium to the mix before it did any good for me. After about a year it stopped working, but it did help for a time. Do your homework here on the site, print out information on things you feel might help and share themwith your doc. you will ahve to be proactive in your treatment if you want any relief.

Jerry

Title: Re: New guy on the block
Post by ClusterChuck on Apr 8^th, 2007, 12:32am

on 04/08/07 at 00:23:04, Callico wrote:

I'm not a dr, but I can tell you with certqinty that 180mg of verap won't cut the mustard.

Gotta disagree. It DOES work for some.

When verap was working for me, I was only at 120 mg a day ...

Now, no level works, but it did for many years.

Chuck

Title: Re: New guy on the block
Post by Callico on Apr 8^th, 2007, 12:42am

can't argue with that Chuck! Most that I have talked to have been in the upper levels that they could take before seeing results, myself included, but like you it quit working. :( I hope Tommy gets better results.

jerry

Title: Re: New guy on the block
Post by TonyG1 on Apr 8^th, 2007, 6:27pm

I take 180mg of Verap and it is a very lose dosage; however, being episodic the million dollar question is where does the cycle end in relation to where the medication begins .... Granted 180mg doesn't prevent every attack; however, after taking it for a couple of weeks it does reduce the frequency and intensity of attacks.... I prefer the lowest dosage I can get by with so that I can gauge when the cycle is over and I'm willing to endure fewer lower intensity attacks ... Paying the piper I guess ....

Title: Re: New guy on the block
Post by soren6 on Apr 10^th, 2007, 7:13pm

hey hang in there
When mine first started Went to a million eye doctors thinking something had to be wrong with my eye
when i finally got to a neuroligist he diagnosed clusters but wasnt using any thing recommended for clusters
second neuroligist told me i must have a vein thing in my head that could kill me (AV malformation) (I didnt)
third neurolgist diagnosed clusters but finally used the right treatments sometimes its a long haul but keep on trying :)

Title: Re: New guy on the block
Post by BarbaraD on Apr 11^th, 2007, 11:12am

My miracle drug is topamax (called dopamax by some). I take it (the whole dose - right now I'm on 150mg, but it's adjustable depending on how hard I'm being hit - my maintenace dose is 100mg) at night and don't have the side effects that some experience. I also keep Red Bull handy for the beginnings of a hit. O2 is a standard in my house (15 liters per minute with a non-rebreather mask) and the coffee pot takes about two minutes to brew.

Ice worked for years to help with the pain and then quit (made it worse) so now I use heat.

The bad part about CH is that it CHANGES on you. Just when you think you have it beat - the darn demon changes tactics.

Keep looking for a neuro that will work with you and knows what the hell he/she is doing and then stick with him/her. Also find a GP and educate him/her. For years I've had a GP and a neuro who have worked together with me and it's been ideal. My GP just retired and now I've got to find a new GP (hate to train a new doc, but don't have a choice). Interview the docs - do you KNOW what a CH is? How many CH patients have you treated? etc. And remember they are working for you and they are NOT God! If you don't like what they say find another one. Most of us have gone thru several before we found one we could live with.

And Tommy - read everything you can on this site. There's years of experience here. And if you need to ask questions, there's years of experience to answer them. Clusterville is open 24/7.. Welcome home.

Hugs BD