Hello all, Im new to the boards. Ive figured out in the last few weeks that Im not getting some god-awful sinus infection on one side of my head each fall for the last 3 or 4 years,nor have I been having a stroke about every single night of the week at 3:30 am for the last 5 or 6 weeks,and as hard as it may be for some of us to believe,Im not the only person beating their head against the wall,floor or headboard for 15 mins to 1 hour on most nights for the past couple of months. Actually all indications are that I am suffering from these CH's like so many other of you poor miserable people. I could not imagine there was actually some condition that had the same symtoms that I have. I cant really say that I am thrilled to be here but they say misery loves company I suppose. I could really use some help finding a qualified neurologist in the Indianapolis or Elizabethtown/Louisville area if anyone has any good leads I would really appreciate it...Jeff

Glad that you found us. Right now your world looks a bit grim but thousands of us here will tell you that relief is available and that we've been able to live good lives even when our "friend" is riding in the hip pocket.
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Read as much here as time permits, including the buttons, left of this page.

This source more detailed info after you begin to grasp some of the basics but an excellent source of detailed medical information.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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. 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.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

Welcome to the club! Here's a link to sufferer recommended docs:

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When you get a second, follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe

First thing I want you to learn to do is to learn to avoid getting into a panicked state when these nasty attacks hit. While relaxation certainly isn't an option, the important thing to keep in mind is that the only way a CH can kill you is if you allow it to. Otherwise you are going to experience a lot of pain for a while and I want you to realize during those attacks that you are going to come out of it exhausted, but physically ok. The pain from CH is bad enough without having to mix it with anxiety and terror. You can help yourself a great deal by not giving in to the emotional side of it during an attack.

Second, I want you to realize that most of us had a great deal of difficulty in working with our physicians because CH just isn't that common and most Docs aren't very familiar with it. You might be able to find a member on this board that lives near you who can recommend a good physician to start out with. Even if you have to start working with a Dr. that is 100 miles away, I suggest doing that initially in order to cut through the delays and get a treatment regimen going. Then you can work on finding a Dr. that is closer who is willing to keep you on the treatment plan that you started if it is working. I wasted 3 years trying different Docs until I found one that understands CH. That was the worst period of time for me and it probably was for just about everyone else as well.

Third, understand that there are a lot of similarities between patients but also that there are a lot of differences as well. There are dozens of coping strategies mentioned on this site and some will work for you and some won't. Sometimes a coping strategy that has worked great for you will suddenly stop working. I think we have all been through that as well and it is normal for us. The bottom line is that you have to keep your mind open and stay flexible with those coping strategies. If you find one that works, then you ride that horse as long as it will carry you but when it stops, don't be afraid to try another.

Fourth, educate your family and close friends about CH as much as you can. They are going to view your behavioral characteristics during attacks as something very odd and scary at first. Help them understand how to help you. Sometimes that is as simple as giving you "space to pace", or access to very quiet, cool dark room.

Fifth, do not allow CH to control you. Live your life. The longer you deal with CH the better you become at handling it. It is very easy to shut yourself off and withdraw from the world but that is not an effective coping strategy.

I am a new member on this board but have silently followed it for over 10 years. There are many great people on here that offer some terrific advice. This is where I start browsing when I need a new coping strategy or just need to remind myself that I am not the only person fighting with CH. Good luck and welcome.

WOW df....first post!.....you should contribute more often...that was most EXCELLENT.

Best

Jon

jon019 wrote on Jan 31^st, 2014 at 12:19pm:

WOW df....first post!.....you should contribute more often...that was most EXCELLENT.

Total agreement here. Please contribute more!

Agree with Mike and Jon - dfcornwell is dead on. 

I will add that preparation is also a key part to fighting the beast. 

Have your weapons ready.  For me that is my Sumatriptan, and energy drinks on standby ready to go - ice pack in the freezer and my water bottle near by.  Also I take my Vitamin D3 regiment religiously with dinner and take melatonin before bed EVERY NIGHT!  I read my body for signs that my D3 levels are low and adjust as needed. 

Its not a matter of if the beast returns, its when and how will i deal with it when it happens.  Now that I know what to do I am not scared.  I will fight back and I will survive.

The family thing is also so important.  My wife knows where my meds are, knows to make sure my energy drinks are on hand and how to whip up a quick cup of coffee if we need it.  Also knows to leave my alone and only help if I ask for it.  We keep our daughter away as well so I don't scare her.  She's only 9 months old and I don't want her to ever see me dealing with a CH.  Hopefully with D3 she never will.

Hello folks,Im still here,with my ears on. I really want to thank you all for the help you have given me and all of the help I have found on this site. My wife is a long-time sufferer of migrains so I am taking topamax that she is giving me,Im up to 100mg a day now,Im not enjoying the sides and Im not sure if they are helping but Im quite certain that the D3 is making a HUGE difference,I started on the regimine immediately and there was a change in frequency and intensity within a few days,I cant remember all of the details but I got them down to none from waking up most every night 1-2 or 3 times and seriously almost putting a hollow-point into my head on more than one occasion so I honestly believe you folks have saved a life over here on my end. I read through all of the listing for specialists and was able to locate one that is a litle over an hour from me. I have no insurance and Im not wealthy but I made an appt. though it was a little over a month out at the time I am presently counting the days(15 now). Well today I woke up with my first big time CH in almost 10 days so now Im terrified that the walls Ive thrown up are crumbling and the shabby little cage I have this beast in is breaking down in some manner or another. I could sure use some help hooking up with some ghetto oxygen. Ive looked on craigslist and I can find welding tanks or medical oxygen tanks that are E? Do I need a script to fill a medical tank or a special regulator if I buy a welding O2 tank? At present my abort strategy is an icepack,redbull doesnt seem to work for me at all,a hard surface to bang my head on and then the last resort is the ever present hollow-pint,thanks for all the help...shoot

For your oxygen questions, have a read through the oxygen page here. It's got a huge amount of info.

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Before you see your specialist make notes of what questions you want to ask, then as you are in the appointment, tick them off, add notes and ensure you don't leave the appointment without asking something (so easy to do).

I'd be very careful around taking medication that was given to your wife for your headaches. Things like topomax need to be handled carefully with a dose that matches our own medical history along with potential side effects and more.

How did you use the Red Bull? It works best when drank very quickly at the start of a CH. Drinking it slowly after the CH is established is unlikely to help much.

I'd really recommend many things over using a hollow-point to abort a CH. Just a small list of options includes oxygen, imitrex (injection / nasal), maxalts and olanzapine. We all know the power of these headaches but with a good preventive and abortives you can get in control of the beast.

I usually get a bad headache at 3:30am too.

Mike NZ wrote on Feb 14^th, 2014 at 3:59pm:

How did you use the Red Bull? It works best when drank very quickly at the start of a CH. Drinking it slowly after the CH is established is unlikely to help much.

All good advice above and I agree with what Mike has said. Normally people chug a single dose can of their energy drink but this doesn't work for me. I have to chug a double Monster and even then may need to hit the O2. We are all different and while I'd love to work with a minimum of abortives sometimes I just have to send my full arsenal at the beast. Great first post by the way! blessings. lance