My name is Justin and I have suffered with CH for 5 years. Furthermore, I carry migraine like symptoms with my headaches as well. Those are sensitivity to light, sound, movement and nausea.  My headaches occur on the left side of my face. In 2011 my symptoms began shortly after I moved from Florida to Georgia. That summer I started waking up with a slight pressure in my sinuses which I attributed to the yellow pollen in the state during that part of summer. It was painful and aggravating but nothing to overly concern myself with. The following year in 2012 I experienced the same symptoms but slightly worse. Sinus pressure and a dull pain behind my left ear.

By the fall of 2012 (October) I had my first true headache and my cycles began. I self diagnosed myself rather quickly and went to the doctor and set off on what seems to be a pattern from hell. Go to the doctor, get a sink full of prescriptions that don't seem to fully work or make the headaches worse (triptans, zofran, topimirate, verapamil, etc.). I would take these medications with little to no effect for the better. Then 2 to 3 months in my headaches would simply vanish. In a cycle I would average to a day that year.

By summer of 2013 I hit a personal low. I was 3 months into a cycle and averaging 3 to 4 headaches a day. All seemed to fall around the same time of day. When I woke up at 6 am, 11 am at lunch, 3:30 pm when I got off and the beast hit worse every Thursday it seemed at 2 am. Waking me up from a dead sleep in torment. Instantly having to vomit and head to the shower to seek relief. I was so exhausted by the end of the day from the pain that I just wanted to sleep. Yet I was so terrified of going to sleep because I knew what would happen shortly after I did. I was desperate and nothing helped. I began to pray constantly for just one day headache free. I had been keeping track of my headaches and in the middle of my 296th headache I romanticized putting my 12 gauge shotgun to my eye ball and stopping the pain. I didn't see any other alternative. To this day I still don't know what stopped me other than hope and faith.

In 2014 I was having headaches so bad that I was having to be rushed to the ER and be sedated to ease the pain. Throughout all of this over the years (of course) my work suffered. Being a member of the Armed Forces I was steadily showing up late, having to leave the work place and go home or to the doctor, lay down in dark rooms and any relief I could get. I felt judged by my supervision and especially my peers. No one really understood with the exception of one co-worker suffered from this disease as well.

I quit smoking in the fall of 2014 as well. Over night my night time headaches stopped waking me up to torment. Within the week my cycle completely stopped. I thought that I had found the solution. I didn't have cluster headaches for a year and a half with the exception of random shadows and slight signs of an attack.

Then three weeks ago I had my cycle start up again. I relocated to Florida and work in an aircraft hangar. I've found over the years that smells trigger an attack for me quicker than anything. Jet fuel, gasoline, nail polish or harsh cleaners are just examples of impending pain after they graze my nostrils. I am currently being prescribed Oral sumatriptan. Also soften for nausea and the anti-depressant is new. Unsure of the name at the moment. This cycle I have did even more research. Started a magnesium regimen and melatonin. A coworker here suffers as well. Not only did he refer me to this site but he informed me about energy drinks and gave me three portable O2 bottles to combat this thing. It's been a week and they are already almost empty.

Yesterday was another typical day for me in cycle. I was awoken at 2 am and laid in the shower. For some reason the hot water hitting my head helps. Inhaling oxygen and praying. I hit one at 9 am and another at  4 pm when I was mowing the yard. My fiancé told me to come inside and rest but I had to power through it. After all I had already taken all the sumatriptan allowed for one day. I told her that I just want to live a normal life. To do the things I need to do with impunity.

Last night I awoke at 2 am in agony. I spared myself the sumitriptan and fell asleep in the shower. I have no clue how long I was in there or how much oxygen I have left. I had one as I awoke this morning as well. I'm down to one pill of triptans for the month and I just seen the doctor two weeks ago. It has always seemingly been impossible to get prescribed O2 or injectibles. It has taken me two days to type this up just because I hit it up between attacks.

I hope this is informative and relates to someone. In this life I have found sometimes it helps to just not feel alone in something. Furthermore, I hope someone can help me knock this out. I wish you all the best.

Sincerely,

Justin

Justin, I am sorry that you didn't include, with your long history, information about the doctors you have seen--their training and speciality backgound.

With such a complex and long history, it's necesary to work with a doc who knows how to blend a treatment which works with both types of headache. These folks are often difficulst to locate but....essential. If you have not locatred a skilled doc--
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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.

Hi Justin and welcome,
After reading your post you seemed to have exhausted all the options for CH meds that you could get and a few tricks in the trade to get some relief from the beast, so all I can suggest is you try the vitamin D regimen which has lots of us on here CH free. You can find all the info on here.

Cheers Hoppy

Hey Justin,

Welcome to CH.Com. There are two things in your post that particularly cought my attention.

A) You said you self-diagnosed and B) you refer to " a dark place to lie down".

Firstly, self-diagnosis is not recommended as there is a number of different Primary Headache conditions that mimic CH or have symptoms that are very similar, but need different treatment regimes.

Secondly, seeking a dark, quiet place is not indicative of CH.

The fact that the regular medications for CH don't appear to have worked for you also puts a question mark over your diagnosis.

My advice is to see a Neurologist specialising in Primary Headaches and get a formal diagnosis.

If it is confirmed as CH, then it would be worth trying the Vitamin D3 regimen that Hoppy refers to. You can read up on it at the following link, paying particular attention to section two:

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

However, getting a formal diagnosis is imperative and should be your priority right now.

Peter.

I apologize for my lack of medical description in my earlier message. My symptoms fell under everything I had found on WebMD at the time. When I seen my primary care doctor he validated my assumptions. Since my cycles began I have probably seen upwards of 10 military doctors. I doubt they are specialized in anything. However I was appointed a very skilled neurologist that ran me through a panel of MRI's, CAT scans and contrast through my head. Giving him a well based description of my headache history and the medications I had been prescribed in the past, he diagnosed me with Cluster Headaches with migraine like symptoms. He told me that even though I have cluster headaches, my mind interpreted them as migraines. Thus I would have nausea, and the related sensitivities. Over the counter medications wouldn't touch the symptoms. He actually tried a list of new treatment methods I haven't heard of since to include lidocaine nasal spray. Even though I could never get the script filled by the military. It had to be mixed by a pharmacist or something and their pharmacy didn't have that skill set. He also gave me a list of "no-no" trigger type food and drinks. Which seem to still be fairy true to me. Chocolate, alcohol, and aspartame will trigger me. I worked with this guy for about 2 years and he was the only one to comfort me with his knowledge of cluster headaches. I haven't found a neurologist in Florida yet but I have promise in one. I am working through the VA right now. Awaiting assignment to a primary. I am going to request my coworkers. Apparently she is knowledged and knows how to get O2 prescribed. The large bottles along with injectibles.  Thanks for everything thus far. I haven't heard of the vitamin D treatment.

It"s under here,
Medications,  Treatments,  Therapies
Anti-Inflammatory Vitamin D3 Regimen and Survey
It was started by Batch very well known person on this board he basically saved my life.

Mark.