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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> New To Forum NOT to Clusters!
        
(Message started by: bernieb on Dec 6^th, 2004, 12:45pm)

Title: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 12:45pm

Hi Folks,
I am a 39 year old male and I have suffered from cluster headaches since I was 16. I really do mean suffer because I have never received any real treatment for them. I always suffered through the cycles and then just forgot about the whole nasty ordeal until the next time they came around.
When I first started getting them, I was pretty chronic. They went on for years and I could set my watch to them daily. Of course in the beginning I went to the doctor and was put on pills that a horse couldn't swallow. Didn't matter anyway because nothing moved as fast as the CH's.
As the years went by, they began to cycle. I would get them for a month or two and then nothing for maybe a year or even more. I finally diagnosed myself when I was about 20 years old after reading a book on headaches. The CH description was as if they wrote the article specifically about me?
I have all the classic symptoms. It usually starts for me around my top molars on my right side. The first sign is this little twinge. Then it moves to my eye and the tearing begins along with nasal congestion on that side. Within 15 minutes or so, it starts to rage!
My wife and two sons (9 and 5) know exactly what is coming on and I get out of the room immediately when it does. It has a very negative effect on my behaviour and I am easily angered when they are coming on. This turns around to helplessness in about half an hour.

I am finally posting because they have started again and this time they are back with a vengence. My clusters used to only last for an hour max and then would pass as quickly as they came on. My newest cycle is my old clusters times 100!!! Extremely painful and lasting for 3 or 4 hours!! The least has been 2 hours and that was last night.

I am researching your site for treatment options. I used to be able to control them at times and with the right amount of meditation, I could actually stave off an attack. Not this time..................
I have popped everything I could get my hands on. Advil migraine, percacet, nasal decongestants, whatever I could find. I actually almost threw up last night and I think it was the cocktail of meds I took. This is not safe nor is it effective.

I hope I do not get to know everyone here too well as that will mean I am still suffering. If I can help anyone else out in any way, please let me know.

B

Title: Re: New To Forum NOT to Clusters!
Post by byoung111 on Dec 6^th, 2004, 1:20pm

Hey B. I've had CH for 8 years and as of Friday, never had abortive meds. I tried Prednisone last year to break the cycle, but I still had the headaches. After reading the message boards last week I decided to go to my Dr. On Friday I asked for the Imitrex injections, and O2. On Sunday I had my first chance to test them out. The Imitrex killed the beast in 15 min, however I had a rebound 6 hours later. For that one I tried the O2 which stopped the CH in 5 minutes, but I used it for 15 to make sure. I hope you can find something that works.

PFNAD

Brian

Title: Re: New To Forum NOT to Clusters!
Post by unsolved1 on Dec 6^th, 2004, 1:30pm

I'd see a neuro and get some preventative meds that may help. The Verapamil / Lithium combo is sometimes effective. Ask for abortive meds ... O² helps many while alot of us rely on Imitrex injections for quick relief.

Read this site for a ton of info

Goodluck

Unsolved

Title: Re: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 2:07pm

Thank you.
I appreciate the responses.

I think I may have easy access to O2. Do you support my decision to try that first prior to taking any more drugs?

I am hopeful that the cycle is almost finished now but I can't be sure.

I am wondering about something. My BP has gone up over the last year or so. Probably just age and lack of exercise related. I am trying to cut down on salt intake and I am trying to get more exercise.
Does it make sense that the increase in BP could be responsible for the increase in the potency of the CH?

Thanx
B

Title: Re: New To Forum NOT to Clusters!
Post by Jimi on Dec 6^th, 2004, 3:04pm

Hi Bernie............

Yes by all means try the 02 first. You will need a regulator on the tank that will register at least 15LPM. It is safe and much easier on you then the meds. Imitrex injectors and just as effective when you don't have your tank close by. 02 was a godsend to me.

Title: Re: New To Forum NOT to Clusters!
Post by becky8 on Dec 6^th, 2004, 3:04pm

Hi, You need preventives too. Verapamil is what alot of us are on and some with low doses lithium with it. Verapamil might be excellent for you because it LOWERS your blood pressure. Check with your Dr. and ask about it, you need to be on alot higher doses than just taken for blood pressure though. Again talk to your Dr. Read as much as you can here, go back on the boards to and you will see alot things that will help you, did you check out the side boards and the OUCH website. Trex shots, If I use the whole stat 6mg dose I will get a rebound headache. Try just using 3mg, works most of the time and no rebounds. See imitrex tip on the side. Were here to help, theirs alot of good people, who can help alot. Good Luck!!
Becky8

Title: Re: New To Forum NOT to Clusters!
Post by Ruth on Dec 6^th, 2004, 3:22pm

Hi B
Welcome to our forum, I hope you didn't mean what you said about not sticking around when the headaches are gone. You will miss us if you leave, I am out of cycle now, but I come here everday and see whats up with the family.
Good luck with meds, I like 02 and imitrex, heavy on the 02 light on the trex.

Ruth

Title: Re: New To Forum NOT to Clusters!
Post by nani on Dec 6^th, 2004, 3:26pm

Welcome and sorry you're here. You'll need a non rebreather mask with the O2. I would consider prevents if I were you. They may help shorten or ease the episode. Pain free wishes and good luck...

Title: Re: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 4:14pm

My apologies Ruth....
I guess I just look at a support group as being a sign that I am indeed in need of one and I sure wish that I wasn't. I am certain that you are all very special people. You need to be to endure this.

I feel embarrassed by my own stubbornness in not seeking out help sooner. This is a part of my personality that I wish I did not have.

I spoke with a close friend who says he will have no problem in getting me an O2 tank. I haven't mentioned anything about the mask or regulator yet but I remember seeing a hospital grade tank at his garage at one point (he is a hot-rodder and has this stuff laying around...lol) It was one of those little tanks that go on the little cart thingy that people wheel around. Anyway, he is going to set me up.
I am going to call my doctor now for a physical and a referral to a neurologist.
I will keep you posted

I am extremely happy that you are all here.
A little less happy that I am!

B

on 12/06/04 at 15:22:18, Ruth wrote:

Title: Re: New To Forum NOT to Clusters!
Post by marlin on Dec 6^th, 2004, 4:32pm

bernie, First, don't waste any time taking OTC medications or even prescription pain medications - USELESS AGAINST CHs. The O2 helps. I started that abortive about 10 years ago. It's safe and easy on the system. But, by no means should you stop there. I still get CHs that plow right through the O2 like I wasn't even breathing it.

You should get with a neuro stat. If you don't have a heart condition and your neuro seems to be unsure about what to do ask about Imitrex. Get a samples from him - don't leave his office without them. You can try all forms - pill, nasal spray and injectible. For me only the injectible is worth a damn - BUT IT WORKS 100% OF THE TIME AND THE CH IS ALWAYS COMPLETELY GONE IN 5 MIN OR LESS. You will want to shoot yourself for going without and suffering just because you didn't want to go to a Dr. And your insurance will most likely fight you on the trex so get started with that battle right away.

I discovered an admiration for the drug companies after my first trex shot - a remarkable product.

Title: Re: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 4:46pm

LOL,

My friend just called to say that after some sweet talking at a medical supply company, he is on his way here with a fresh tank, regulator and mask for me.....
Damn its nice to have friends....

I am trying to get in to see a doctor and it seems that I will have to go to urgent care because my doctor has no open appointments till the end of December.
Stupid HMO

At least I have a start.
My sister is a GP but she lives in Canada and I am in the US. I am going to solicit her help as well. Maybe she can help me research this thing.

I will have the tank on standby tonight in case my CH crops up. I will post tomorrow if it helps.

B

Title: Re: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 5:11pm

Hmmmm,

Apparently my brother-in-law who also suffers from CH's was prescribed ----Ergotamine----.
He was taking this in an inhaler and he says that it worked well for him.

There has been something that has troubled me for years now.
When I was a young lad, I had to have a molar pulled on the right side of my mouth. The dentist was exceptionally brutal and I remember having to go to the hospital to constrict the bleeding.
The more I think about it, the more I remember that this happened not too long before my headaches started. After reading a little about head injuries and their association with CH's, I wonder if tooth extraction may have been what caused my headaches to begin?

Any others?

B

Title: Re: New To Forum NOT to Clusters!
Post by marlin on Dec 6^th, 2004, 5:14pm

Ask if the urgent care can refer you to a neuro. If so OK. If not - call your PCP and DEMAND an appt. Say you're feeling depressed and might kill yourself or something that sounds scary like that. You'll get in.

Title: Re: New To Forum NOT to Clusters!
Post by marlin on Dec 6^th, 2004, 5:21pm

on 12/06/04 at 17:11:43, bernieb wrote:

No. I had all 4 pulled. It started as a suggested way to relieve my CHs. 25+ years ago before CHs were even marginally well uderstood by avg neuros.

It's pretty well accepted as a vascular HA and related to hormones - seratonin levels, receptors.... complex brain biochemistry and natural balances. The reason I believe it is because trex works by altering biochemistry.

Title: Re: New To Forum NOT to Clusters!
Post by bernieb on Dec 6^th, 2004, 6:04pm

Good,
So I guess I can put off hunting down that dentist and extracting all his teeth.......
;;D

Anyone here using Ergotamine?

B

Title: Re: New To Forum NOT to Clusters!
Post by Jimi on Dec 6^th, 2004, 6:26pm

Back in the olden days before Imitrex and 02, ergotamine was the only thing that seemed to work well. The fastest way to use them was in a suppository. I used it for years. Ergotamine inhalers worked but seemed to take a little longer. But it still works I suppose, but not as fast as trex. P.S. remember if you use the 02, make sure regulator goes up to at least a 12. I get by with 10 LPM, but some take up to a 15 flow. Good luck.

PSS BobP and BarbD both have used ergotamine as well.

Title: Re: New To Forum NOT to Clusters!
Post by don on Dec 6^th, 2004, 7:30pm

Quote:

Say you're feeling depressed and might kill yourself or something

If you say that expect the police to come knocking at your door with the crisis team in tow. You can also expect to be sectioned for observation for a few days. Willing to go through all that? If the answer is no then dont follow the above advice.

Title: Re: New To Forum NOT to Clusters!
Post by Ruth on Dec 6^th, 2004, 8:10pm

Help is a good thing, support groups work, this one is great, a lot of knowledge around here.
Lots of fun too.
Good luck with the Doctors, mine have been great, but I am a lucky one. If you don't get results, don't give up!!!

Ruth

Title: Re: New To Forum NOT to Clusters!
Post by marlin on Dec 6^th, 2004, 8:52pm

Perhaps don's right? Can't say - Never tried. So maybe tone it down a little to be safe. Tell him it's unsafe to drive your car or something like that. Something that has the potential to make him accountable so he has an incentive to see you. Let him know it's simply for a referral. Try visiting his office without a formal invitation and perhaps you'll get hit while you're there so he can witness the symptoms and an outburst or two?

Don't let those quacks give you the runaround.

Title: Re: New To Forum NOT to Clusters!
Post by allan_r on Dec 6^th, 2004, 9:13pm

Sorry to see you here. Same escalation of CH and same age for me.

When I finally got to a neurologist a few years ago, he put me on Prednisone right away ( a 21 day taper) and it stopped the headache cycle that I was on). The next cycle then came and required a preventative Verapamil that was effective for well over a year.

Good luck with the O2 and hope you cycle out quickly.

allan r

Title: Re: New To Forum NOT to Clusters!
Post by don on Dec 6^th, 2004, 10:19pm

Quote:

Perhaps don's right?

No perhaps about it Marlin. The Doc would be mandated by law to immediately call 911 after someone makes that type of statement.

Your doc being booked doesn't make him a quack or that he is giving you the run around, just a booked up Doc. Tell him the pain is so severe you fear you may fall and injure yourself and ask to be contacted if he gets a cancellation.

Title: Re: New To Forum NOT to Clusters!
Post by Sean_C on Dec 6^th, 2004, 10:43pm

Welcome aboard, sounds like your in good hands

pfdan to you

Sean..............................

Title: So Far So Good!
Post by bernieb on Dec 8^th, 2004, 5:19pm

Well, my O2 tank must be acting as a deterent because I haven't had an attack in 2 two days now. I am keeping my fingers crossed that this cycle may be over but I want remain prepared just in case.

I am going to try and stay in touch with the forum and I give my heartfelt thanks to everyone who has replied to my post.

I got to go through a bunch of the pictures in the gallery and you all seem like great people ------ and a couple that are definately having some fun.......

;;D

Bernie

Title: Re: New To Forum NOT to Clusters!
Post by marlin on Dec 8^th, 2004, 6:07pm

If don's waiting list / cancellation request doesn't produce results try offering your dr a blowjob. By then you'll probably have suffered dozens of attacks and be willing to do anything.

Naaaa, go and sit in his office. Look, I don't have the fight in me any more to go through these CHs unarmed since I found trex and so I feel for you. You need to see a neuro before your cycle ends or you jump off a bridge.