Hi,

I'm not really new to this site but it's been a while since I logged on. I've had Cluster Headaches for 23 years and have never taken a prescription medicine for them. I am now 78. About 15 years ago, after being bounced around from one Doc to another, I was finally referred to a Neurologist in Portsmouth, NH who confirmed that I probably had Clusters. She recommended a drug, whose name I can't remember.When I went back to my family Doctor, he said the drug had too many side effects and that I shoudn't use it, which I didn't. Since then, I've suffered thru many cycles but I must admit I'm becoming a "little" depressed and I want to try and see if I can get help.

I probably fit the classic mold of clusters.  This cluster cycle, which started slowly in April, came after two+ years. The pain is not as bad as it was in earlier years but it's bad enough. I basically have two questions:

1. I am on Medicare. Do I need a referal from my family doctor to go to a Neurologist? The reason I ask is that every level requires waiting for an appointment, etc.

2. Does anyone know of a Neurologist in the Dover, NH area (Seacoast, Southeast New Hampshire) that might be kind of a Specialist in Cluster Headaches?  

Thanks, if you can help.

OLDRED

Hi Red!  Welcome back to the board.

Sorry but I can't comment on medicare procedure.

Do you have any heart issues?  If so you'll want to tread lightly on a lot of the treatments we talk about.  If not you can try energy drinks to help with the hits.  Also consider some OTC Melatonin for night hits.

100% Oxygen at a high flow rate, between 12 and 25 lpm with a non-rebreather mask is a great way to go.  Fast abort times and no side effects  ;)  This is my favorite weapon.

23 years fighting the beast naked.  You're one tough old SOB.  Let's see if we can't work together and find you some well deserved relief.

-Dennis-

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Print out the first link's article and take to any doc you see. Ask about using olanzapine (Zyprexa). Very effective for some of us (I was 64 when I discovered it) and it should have no cardiac effects (assuming your doc's concern).

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Search no more.
thebb ;)
I think 02 would be the thing for you.
Tougher than hobo shit, you are.

:)To Dennis, BR Johnson & The ebbz. Thanks for the info guys. I'm just getting over a moderate headache that I got about an hour ago. Picked 2 quarts of Blueberries today. Then talked my wife into making a Blueberry pie. That's my next stop.

OLDRED

Finally -- someone OLDER than me around here.....  :)  Enjoy the blueberry pie....

Talk to your GP and get some O2 (at least 15 liters per minute with a non-rebreather mask) - Get on it at first sign of a hit.... Works for about 70% of us around here. Great stuff. I just got on a 25 liter per minute regulator and it's even better.

There are some meds out there that might help, but the O2 is the first line of defense.

Welcome to Clusterville.

Hugs BD

Hi Barbara,

Thanks for the suggestion. I was thinking of going that route. I think the O2 may be all I need. Anyway it would be a good start. I've been looking for a Doctor (probobly a neurologist) that has some experience with clusters. The O.U.C.H. directory indicated that we don't have any headache specialists in New Hampshire. I also tried the Headache Foundation with the same result.

Years ago I belonged to the Headache Foundation. At that time there was a Doctor Paul S Blackman listed in Weymouth MA which is South of Boston.  I never pursued it  If anyone reading this missive, and who might have heard of this Doctor, or any other, within a reasonable distance of Dover, New Hampshire., please let me know.

I have been my worst enemy in that I wait about 2 months into a cycle before I decide to do something. Then, by the time I can schedule an appointment, even with my own Doctor, the cycle ends and I let the whole thing slip. I've been doing this for 23+ years. Every time a cluster ends, I'm dumd enough to think that it won't come back.

Ha Ha Ha. Small chance.

Thanks again,

OLDRED

Hey Red,

You're right up in Portsmouth NH right?  I'm in Haverhill MA.  Try my Neuro.  He's only 45 minutes from you.

Dr Andreas Schoeck
354 Merrimack St
Lawrence, MA 01843-1754
9786872321

The guy treats a few cluster patients and knows what's up.  I've been able to work with him to get a treatment program that works for me.  Tell him Dennis sent you  ;D

-Dennis-

Hi Dennis;

Thanks for the info. I've just made a couple of calls and find that I need a referral before I can see a neurologist. We have a group of them, here in Dover. The receptionist tells me that they all deal with some Clustres. I feel like I'm nearing the end of this cycle so I'm going to wait it out a little longer. In any case, I need to get prepared for the next cycle. If I can hold off, I might wait 'till my next annual this fall and get a referall.

A small piece of distressing news that I read somewhere this weekend indicates that the older you are when the "Beast" hits you, the more likely you are of becoming a chronic victim!!!!!!!!!!!!! I was 55 when mine started.

On the other hand, I must admit that the pain is not quite as intense as the years go on. Of course, I behave better too. The "Beast" helped convince me to quit smoking 15 years ago, and to quit drinking 3 years ago.
Hey, what's left????????????????????????????????????

Thanks to eveyone for the info.

OLDRED

RDubois wrote on Jul 21^st, 2008 at 10:18am:

The "Beast" helped convince me to quit smoking 15 years ago, and to quit drinking 3 years ago.

Oh wow, I am in awe of you!  That is fantastic!!


Quote:

Hey, what's left????????????????????????????????????

Oh my God, that's EXACTLY what I think!!!! ;D  I mean really, just what is the point of suffering through such hell when you can't do those things that are bad for you? ;)

Welcome back and I'm sorry about the hurting.  Good luck to you and use all the resources available!  Hopefully you're right and your cycle is ending.

Good luck!
:)mel

I would suggest you go through the process of getting the appointment now.  See what the Dr knows about clusters and get your O2 script now.  It can take weeks to get in to see someone and the first one you meet with might not be the right one.  

Best to get all these logistics out of the way now.  That way when your next cycle hits you will have your weapons ready.

-Dennis-

Get the 02 now. Dust on the bottle will not hurt anything.
Hope for the best, prepare for the worst.
all the best
thebb