Hi,

I'm really glad to have found this site!  A bit about me:
My name is Angelic, I live on the Big Island of Hawaii.
I've suffered from migraines since I was 16 years old.  I'm about 6 weeks into my first cluster at the age of 44.  I thought I was having the worst migraines of my life and thrashed for weeks trying to figure out what was triggering them  
My migraines have long been under control with only 1-2 migraines a year (with clearly identifiable triggers which I know to avoid).
I went through triptans (tablets) at 3-4 per day for the first 5 weeks.  The pain blew through my self control (and I thought I could handle head pain) and left me in sobbing-thrashing-pacing-screaming agony for the hour that it took the triptan to take effect
I was in a pretty dark place and suffering the side effects of the triptans all day long on top of the attacks.  For me, the pain starts in my right temple/eye area and as it builds, it spreads to all of the teeth on the right side of my upper and lower jaw.  My Neck also aches .. but I'm not sure if this is from contorting it on heat/cold packs trying to find some relief.  Long story short .. I eventually stumbled upon a description of cluster headaches online and was blown away .. every detail matched .. the tearing, the stuffy nose (though that happens with migraines too) the timeliness .. esp at night and while sleeping.  Even the time of year.  I read about Oxygen and was able to try medical oxygen at work .. and it greatly reduced the pain after about 20 minutes (even though it's only about an 8L flow rate).  Armed with this info I went to my Dr who prescribed Oxygen therapy and after some struggle, my insurance is covering it.  I've had oxygen for about a week now and am so grateful to be able to combat the pain.  It takes several 20 minute sessions to stop each attack though .. after reading this site.. I think I need to ask for a higher flow rate and a different mask.
So I'm now coping better and have been trying to return to normal work hours and finding it impossible   I'm struggling for sleep but the fear of waking up with the PAIN is making it very hard .. even if I only have to survive the full pain for 15-20 minutes and have an O2 tank beside the bed .. I'd rather be awake when it starts so it doesn't get so bad   And the more it has a chance to build, the more pain stays with me despite the O2.  I'm so afraid of the pain that it's like a phobia or something   The morning attacks drag on and I'm afraid to start driving to work until I know I'm clear.  Right now, I can't leave work until I beat the current attack.  This is just grinding me down till nothing exists but PAIN, fear of pain, residual of the last pain and anxiety about how long the cycle will last.  I feel like a wimp, but can't snap out of it.
So now I've started the paperwork for a temporary leave from work (temporary disability) and am hoping that this cluster ends sometime soon.  That's my story so far.
Thanks for listening.

Aloha
Angelic

Also .. the sweating is very annoying .. my hands and feet are constantly sweating no matter what the temperature is.  In fact, the only decent nights sleep I've had recently was 2 nights ago .. and the sweating mysteriously stopped that night too .. very weird.

Having both migraine and cluster treatment is moe complex. Working with a headache specialist would be a valuable move.
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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.
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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.
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Pill form of Imitrex is way to slow acting for the rapid onset of Cluster; oxygen as the only abortve is too short lived to give full relief. Really time for a fresh evaluation of your situation.

If you have the option, seeing a headache specialist is your best choice. Increasingly, we recognize that this is a far more complex  set of disorders requiring docs with deep education and experience.
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Print the PDF file, below, both for you informatation and as a tool to discuss treatment options with the doc.

Since Cluster is usully a long term issue, becoming aware of your options, etc. will give you a better sense of how to effectively treat yourself.

Thanks for all of the info!!
I haven't been making it to the computer very much   but I have an appointment with my neurologist today and am going armed with lots of info
I *think* that the frequency of attacks is trending down a bit .. more like 2-3 per day .. with one notable headache free 24 last week. I just had another bad night though .. so my optimism isn't complete.
My neurologist prescribed Indomethacin to help with pain that isn't stopped by the O2.  I'm supposed to only use it once per day .. so I save it for nighttime attacks.
The sweating had stopped for the headache free day and is really bad again now after last night .. I'm convinced that the two are connected.  To the point that I don't feel safe going to sleep when the sweating is happening for fear of a pain filled awakening
My doctor wrote a new O2 prescription for a higher flow rate (15 L/M and non rebreather mask) .. waiting on insurance approval.  Meanwhile, the O2 stops the worst of the pain, even if not all of it.
I'm not sure about the length of the attacks .. it seems to me that mine last longer than the typical 15 min-1.5 hr.  I'm still at about a pain level of 3-4 right now and it's coming up on 5 hours since the last attack started.  It's almost like the nerves are so inflamed that they retain pain.  At least it's a bearable level of pain.
I'm on short term disability for now and my employer and primary care physician have both been very supportive .. so I'd say I'm doing as well as can be expected
Thanks for the support and advice!!
Angelic

Angelic, the indomethicin can be really rough on the tummy so ensure you always eat before taking it. Also consider a chat with your pharmacist as there's complementary medications which will help stop problems arising.

GREAT call on Batch's D-3 regimen, I'm a 30 plus year episodic CH sufferer who has been pain free for over 5 years on the D-3 regimen, hard to believe something so damned simple could be such a profound game changer! Pay attention to Batch, for an old fart that man does know of what he speaks!

Joe

Hi again,

As you can guess from the long silence .. things have been great!  The cluster ended, I went back to work and had a period have been no real headache issues .. no migraines either!  I've stuck with the maintenance dose of D3 (all supplements from Batch's list).

I think I'm entering my second round of cluster headaches though.   So far .. no severe pain!!  I'm getting all of the same symptoms (1-2 times per day right now) except that the pain is the barest echo of what I went through before.  I'd rate the pain as a 1-3 max.  My eye waters, the pressure is there and the "shadow" .. the pain radiates through that side of my head .. but it's ignorable .. or manageable with some ibuprofen.  If it's happening at night, it's not waking me up   I'm also taking melatonin before bed which is helping me sleep better

So I'd say I'm another success story for Batch's D3 regimen.  So simple and so profound the impact!

Thanks so much!!
Angelic

For the shadow attacks I use 5 Hour Energy shots. It's only about 2 oz. and tastes horrible so chase it with water. For me it stops the attack in about 7 minutes.