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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Another New Guy
        
(Message started by: IcePickStuckInHead on Feb 11^th, 2004, 10:34am)

Title: Another New Guy
Post by IcePickStuckInHead on Feb 11^th, 2004, 10:34am

I am new to this web site. I started getting clusters when I was 15. I am now 41 and have been pain free for the last 3 years. I felt "THE PHANTOM" about 3 weeks ago but was in denial until the beast reared its ugly head. My doctor just dosen't get it and is trying to treat me with a host of ineffective treatments (none of which work). I have been getting one a day and am currently searching for a doctor who is also a sufferer. My next step is to go down to China Town in the city and look for some raw opium.....HELP.

Title: Re: Another New Guy
Post by TxBasslady on Feb 11^th, 2004, 12:25pm

Welcome to the board, Ice.

You didn't mention what meds or treatments your doc has tried. You need to read the info in the links located on the left of this page. Print out some of this info and take it to your doc next time you go.

Finding a doc who is educated on CH certainly has been a problem for many folks here.

You will find information here on some otc meds that may help. Melatonin works for some. Check out the water X 3, and also the oxygen link.

Let us know how you're doing.

PF vibes,

Jean

Title: Re: Another New Guy
Post by Bob_Johnson on Feb 11^th, 2004, 4:47pm

Couple of other messages in this section have leads on finding good docs.

In any case, educating yourself is critical. I'd highly recommend the second book, below, although all are good.
---
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Another New Guy
Post by echo on Feb 11^th, 2004, 5:31pm

Sorry to read that the SOB has decided to camp in your head. Hopefully the med information available will assist you in educating your doctors as to what type of med combo platter will be best for you to prevent futher occurances.

Title: Re: Another New Guy
Post by Little Deb on Feb 11^th, 2004, 7:13pm

Welcome Ice Pick!

Best of luck as you search for the best bit of help you can find.

Hope you stay with us.....we are very friendly. ;;D

Big Hugs......Little Deb

Title: Re: Another New Guy
Post by don on Feb 11^th, 2004, 10:20pm

Opiates do not relieve the pain of CH in fact they may induce an attack. Trust me on this one.

Title: Re: Another New Guy
Post by BarbaraD on Feb 11^th, 2004, 10:23pm

Welcome to Clusterville Ice.

Read all the stuff before you try China Town. I agree with Don - opiates don't do the trick. Try the other stuff first.

Hugs BD

Title: Re: Another New Guy
Post by ClusterChuck on Feb 11^th, 2004, 11:15pm

Welcome aboard, but sorry you have to be here.

You may try some of the home remedies while you are waiting for medical help. Read the button on the left water X 3. Try it.

Also, many get some relief using heat or cold. Many (myself included) use a cold pack (I use a bag of frozen peas) applied somewhere on the head or neck. It will take some trial and error to find the spot that works best for you. I find the best help when applied to the back of my head, just above the bottom of my hairline. Some go out and literally stick their head in the snow for help. Others turn the air conditioner on full, and put their head in front of the vent.

Others get results using heat. Maybe a VERY hot wash cloth onto your head, somewhere. Some stand under a HOT shower. Some use a combination of hot and cold.

Some use excercize, while others use sexual activity to help. Both activities are redirecting the blood flow around the body.

Keep reading, and hopefully you will find something that helps you. Many of these methods do not STOP the headache, but lower its severity and make it easier to deal with.

Good luck, and keep us informed.
Chuck

Title: Re: Another New Guy
Post by stuey on Feb 24^th, 2004, 3:40pm

Hi. Sorry you are going through it. Wondering when you said you were going to China Town were you talking New York or San Fran? I'm in NYC and found a Headache Specialist here name of Alex Mauskop, MD who was finally able to break up my cycle with 960 of verapamil and 50 mg elavil. If you're in New York his number is 212-794-3550. Stuey from Brooklyn.

Title: Re: Another New Guy
Post by ljd1963 on Mar 6^th, 2004, 9:59am

Hey Icepick....Im new here too...41yo.goin strong almost 25yrs now. Might wanna consider the CH convention...I think Im gonna do it for the first time myself.

Title: Re: Another New Guy
Post by Kevin_M on Mar 6^th, 2004, 11:28am

on 02/11/04 at 10:34:25, IcePickStuckInHead wrote:

am currently searching for a doctor who is also a sufferer. ..HELP.

I like the thought, that WOULD be a find!!

Hey, we're here for you, check some doc info listed left. Check to see if you need to get a referral to a neuro, and ASK him his experience working with clusters. Sometimes regular docs may have experience. Keep looking though. Call doctors and ask if they will treat clusters. See what you can do, we are here for anything we can do. It's a tough road and post us on progress, or if it gets to you too.
Hate to grab your hand and pull ya in, but you'll find this site very advantagious in helping with clusters, that's what it's here for.

Hoping for better

Kevin M