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hobbydad

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Litchfield, Illinois
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11 years of CH and first time I have reached out
Aug 18^th, 2016 at 11:13am

I have had CH for 11 years I think maybe more. At first I thought I had a brain tumor. They did all the test for that and came back ok. that was 10 years ago. I think I finally figured it out they were cluster headaches about 6 years ago.
I went to my local Doctor he was no help. I went to a Neurologist in a nearby town no help. I stopped going to doctors for this and I have just been dealing with it myself. My wife is very loving and supportive but I try to hid if from my kids and family because I am so embarrassed how I act when I am have an attach at 2 in the morning.

I am looking for a good Doctor and ready to try some treatments.

Only treatments I have tried is a oxygen mask like you see people walking around with. I don't think its the 100% oxygen mask like I have been reading about. I also take about 800mg of Motrin but it doesn't seem to work.

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Bob Johnson

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Re: 11 years of CH and first time I have reached out
Reply #1 - Aug 18^th, 2016 at 11:50am

After such a long history, perhaps a fresh start would be useful!

Look under: Medications, Treatments, Therapies -› Important Topics ->Cluster-LIKE headache
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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.
====================================
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.
===================================
As a group, neurologists have a poor track record with Cluster because their medical training and experience with Cluster is limited. Unless a Neuro you may see can insure you about his background with Cluster, seek a specialist.
----
And, avoid starting any treatment plans you will get here until you have a firm, clear diasnosis of Cluster. You have spent too many years wandering about to continue any longer.

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« Last Edit: Aug 18^th, 2016 at 11:55am by Bob Johnson »

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Batch

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Re: 11 years of CH and first time I have reached out
Reply #2 - Aug 18^th, 2016 at 12:57pm

Hey HobbyDad,

Welcome to CH.com. You've come to the right place. We know what you're going through and the good news is it doesn't need to be that way.

Bob Johnson has already given you some excellent links to read. Others will be along shortly to give you names of neurlogists in your area who have treated some of the CHers here at CH.com.

I've sent you some additional information in a PM. Your PM inbox is located at the top left of this page under the date. Click on the words in bold saying you have 1 new message
to read this PM.

Take care and please keep us posted.

V/R, Batch

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hobbydad

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Litchfield, Illinois
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Re: 11 years of CH and first time I have reached out
Reply #3 - Aug 18^th, 2016 at 7:09pm

I have spent the day reading and crying. Some of the stories are the same as I have. The embarrassment, shame. For the first time I have hope. I don't know what I would do with out my wife. I love that she is there with me but I wish I did not have to put her through what I am going through. seeing a grown man scream and cry and shake.

I was diagnosed about 6 years ago and did all the stuff my local doctor said to do. None of it worked the meds just don't work for me. For the last 4 years I have been dealing with it by just acting tough. I see know why they get worse when I breath really fast and short breaths. I am going full force in with the oxygen. I used oxygen but only at 8 liters and a very small mask. I found that the oxygen worked but only on my level 3 and 4 ones. once I get into the 5 and 10 level ones it stopped working, I know now why, not enough flow. This web site has given me more information in one day than the last 11 years I have had these.
I have started the D3 , fish oil, magnesium that Batch told me about. My doctor at least will prescribe me oxygen just not at the level I want. I purchased a 15L regulator off ebay and I purchased the mask also off this web site.

I am going to stop being a victim and feeling sorry for my self. I am going to be proactive and work on this. you all have given me hope with your stories and remedies.

Question. Is the ghost that everyone talks about what you feel after you have had a level 8,9 or 10. The headache goes away buy I feel like it left a bruise in that spot behind my eye. This goes away after 12 hours or so and does not really hurt it just feels like a muscle that is worn out.

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« Last Edit: Aug 18^th, 2016 at 7:11pm by hobbydad »

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Peter510

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Re: 11 years of CH and first time I have reached out
Reply #4 - Aug 18^th, 2016 at 7:25pm

Hobbydad,

Welcome. We're very glad you found us. Your story is so typical it could be me, or indeed any one of us. Right down to not letting the kids see Daddy in that state and the guilt for how it effects your wife.

Stick with the D3 and don't stop, even between episodes.

The "ghosts" you refer to are what we call shadows and are exactly as you say, the aftermath of an attack.

I am a chronic sufferer, getting hit all year round and since I got on the D3 regimen I still get shadows, but I can live with that when I think how things used to be.

Keep posting and ask all the questions you need to.

Best,

Peter.

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 11 years of CH and first time I have reached out Reply #5 - Aug 19^th, 2016 at 2:47am So glad for you and your loved ones that you found this site, just like i was when i found it. We'll be delighted if you stick around. Peter is spot on, stick with Batch's D3 regimen. Enjoy the rest of your life
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Mike NZ

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Oxygen rocks! D3 too!

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Re: 11 years of CH and first time I have reached out
Reply #6 - Aug 19^th, 2016 at 6:59pm

hobbydad wrote on Aug 18^th, 2016 at 7:09pm:

I am going to stop being a victim and feeling sorry for my self. I am going to be proactive and work on this. you all have given me hope with your stories and remedies.

This is great to see and you'll no doubt look back at some point and see that this is when you started to take control and see things improve.

As others have said, you really need to work with a headache specialist. Whilst what you have seen sounds very much like it could be CH, there are a LOT of headache types plus other causes that can result in the exact same symptoms. So to diagnose CH isn't just a case of matching the symptoms but of ruling out any other possible cause (this is the hard bit!).

People suggest a headache specialist as family doctors, even most neurologists just don't have the appropriate skills, training or experience to do the correct diagnosis.

Hopefully there will be someone close to where you are who can suggest a good one to see.

And keep reading, the more you know the better you can be in charge of getting on top of this.

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hobbydad

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Re: 11 years of CH and first time I have reached out
Reply #7 - Aug 23^rd, 2016 at 2:01pm

I have been on Batch's D3 program and I have noticed a 2 or 3 level drop in pain level with just that alone. I just started oxygen with a 15L regulator and the mask from this web site. I have aborted 4 ch's and 4 have been only a level 4 or lower. Its working. I just have to work on my breathing technique. I have had 7 today which is a bit unusual but very manageable. Thanks to everyone for helping.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 11 years of CH and first time I have reached out Reply #8 - Aug 23^rd, 2016 at 2:40pm Great news. Stick with it. It only gets better. Peter.
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RRChocolate CH.com Newbie Offline I Love CH.com! Posts: 8	Re: 11 years of CH and first time I have reached out Reply #9 - Aug 24^th, 2016 at 5:09pm I wouldn't expect motrin to work. If you want to go the pharma route, did you try triptans (like Imitrex)? A caffiene pill may also help a little on minor headaches.
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Gaz Jones

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Re: 11 years of CH and first time I have reached out
Reply #10 - Aug 25^th, 2016 at 2:39am

hobbydad wrote on Aug 23^rd, 2016 at 2:01pm:

I have been on Batch's D3 program and I have noticed a 2 or 3 level drop in pain level with just that alone. I just started oxygen with a 15L regulator and the mask from this web site. I have aborted 4 ch's and 4 have been only a level 4 or lower. Its working. I just have to work on my breathing technique. I have had 7 today which is a bit unusual but very manageable. Thanks to everyone for helping.

Hi hobbydad
It is great to hear you have experienced a drop in intensity already with the D3 regime. I am not surprised about the increase in frequency of your attacks, I am an episodic sufferer and when I started the D3 regime I had a similar experience, a few days in it seems like the beast goes a bit haywire and you start to get more attacks at unusual times. I found the attacks were of a lower intensity and generally shorter and I also had longer shadows between attacks. I liked to think about it as the D3 fighting with the beast and but not quite having the strength to put him down yet but weakening him enough to stop him really running rampant.
After a few more days on the D3 the attacks stopped altogether but the shadows remained for a couple of weeks, when the shadows went away I was pretty sure I was out of my episode and I could celebrate with the coldest and tastiest beer I have ever had.
The regime also seemed to shorten my episode from 3 months (which was the usual duration before I discovered the mighty Batch and his AI regime) to around 4 weeks and out of those 4 weeks I was only in serious pain for around 4 - 5 days.
Stick with it, it is by far the best treatment for this horrible malady that I have discovered so far and the best of luck to you

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hobbydad

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Litchfield, Illinois
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Re: 11 years of CH and first time I have reached out
Reply #11 - Aug 26^th, 2016 at 1:59pm

1 week with Batch's D3 program with 2 week loading schedule & using Hyperventilating O2 breathing technique.

1. Wow its working great. I have had not ch's for 5 out of the 7 days.
2. The ch's that I have had had have all been lower than level 4 with lots of level 1 and 2's
3. I have had o2 at 15L for 5 out of the 7 days. The oxygen works. I started out just breathing the o2 as fast as I can at the 15L level with the ch mask that worked ok.
4. Batch's breathing technique with hyperventilating is amazing. I did not think this would work, but it does. I had to practice for a day but I am glad I did. It uses alot less oxygen and It works great I get an abort after about 5 min or less.
5. I have had a lot more ghost's that last a lot longer but I can handle ghost just fine.
6. I know this is the first week but I have never had this kind of pain relief. Thank you to everyone for this forum and checking it for when someone new finds it.
7. My prayers are with everyone who is not getting relief and is chronic.

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hobbydad CH.com Newbie Offline I Love CH.com! Posts: 7 Litchfield, Illinois Gender:	Re: 11 years of CH and first time I have reached out Reply #12 - Sep 8^th, 2016 at 7:07pm I have been pain free for 2 weeks now. The D3 supplement is working.
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 11 years of CH and first time I have reached out Reply #13 - Sep 8^th, 2016 at 7:44pm Great news. Did you get your 25(OH) D levels checked????? Peter.
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Ilndguy CH.com Junior Offline I Love CH.com! Posts: 43 Michigan Gender:	Re: 11 years of CH and first time I have reached out Reply #14 - Sep 9^th, 2016 at 1:54pm hobbydad I'm very happy for you. Stay on the plan and your cycles will be further apart or maybe stop altogether.. Ilndguy
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