Hello Everyone!
This is my story, at the age of 21 in good shape but was a smoker (~ a pack and a half a day) went to sleep one evening like normal but this particular evening was not normal. It was the first time the beast came calling. I woke up out of a sound sleep and started to scream and cry because of the pain. When the pain subsided I thought maybe it was some weird way I was sleeping and didn't think anything of it. Then this extraordinary pain came to visit me during the day (everyday with no remission) as well. I became very scared and worried it was a brain tumor.

I went to see my PCP and he sent me to an ear nose and throat doctor. I had a CT scan of my head to reveal nothing. I was thankful it was not a tumor! Then proceeded to a pain management doctor, he gave me steroid shots in my temples and at the base of my skull. NOT VERY PLEASANT!!!

During this time the beast still paying me visits atleast twice everyday. I was eating Ibuprofen like it was candy. Realised this was bad for my stomach and switched to Excedrin. This seamed to help if I took the medicine at the first twinge of pain. This went on for a couple of years, steroid injections and living on Excedrin. Then I found a Migraine center and made an appointment. I was diagnosed and put on Relpax, (Topamax 150mg/day), Lidocaine inhaler spray, steroid injections, and Imitrex inhaler.

This seamed to work for a while and I had good luck with Topamax but never got used to feeling confused all the time. BTW the doctor I was seeing at the time was an Orthopedic that specialised in pain management. To his credit he did help me get on the right track. After doing some research I quit going to the Migraine center and started to see a Neurologist at a different headache center specializing in Migraines and Clusters. I have been there ever since.

I am now 37yrs old am taking Celexa for anxiety, have been smoke free for 10yrs now. Decided to ween myself off of the Celexa after 2 1/2yrs and no headaches. The beast returned with a vengence. I am currently in a cycle and like that first night I am waking to the roar of the beast. He holds my head down on an anvil and pounds on the right side of my head with a sledge hammer after he has fired the hammer to became redhot. Right now I am using Imitrex injections to abort the pounding and it is working. I am also taking Rhodiola with the hopes of having good results like some other sufferers had on this site.   

I can not imagine a pain worse than this and it has taken a toll on me but has also made me stronger. I feel I can conquer this and will find a way. The other night I had a Kip 9 with nothing to abort so I laid in bed after a slight dance and willed myself to remain calm and relax. The more I concentrated on putting up a shield and strengthening that shield the easier it became to overcome the beast. I never was able to do this in the past.

In closing, I hope and pray that the beast disappears for good from my head and the heads of everyone else on this site. I try to remain positive and it is tough but with every headache there is also the relief and getting to that relief keeps me going during a cycle.

Kind Regards,

Tim

Tim,
Welcome to CH.com. Sorry you needed to find us, but this is the place for CH sufferers.

It appears you have some good treatments but you are missing one of the best. O2 (oxygen) used with a NON-rebreather mask with a bag on it, with a 15lpm or higher regulator has given most of us great help.

We only use the O2 to stop hits, and it is much safer than most people and Dr's think. It's not a bomb I assure you.

Read all you can on the site.

Good Luck, Don

Thanks Don,
I know this maybe a dumb question but would I need a prescription from my doc for the O2 can I just purchase on my own?

Tim

It's not clear to me what meds you are using for the clusters other than Top.

Have you done much reading about CH, treatments, etc. If not, suggest this overview article:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Another useful article below, PDF file.

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tfox wrote on Apr 21^st, 2010 at 8:19am:

Thanks Don, I know this maybe a dumb question but would I need a prescription from my doc for the O2 can I just purchase on my own? Tim

      Welders oxygen rocks.  No script needed.

                 Potter

You need a Rx for medical O2. Like Potter said, many use welding O2 which is the same O2. Check out the O2 info below. With welding O2 don't tell them you're going to breathe it.

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

Don

Thanks guys I will be investing in O2 here in the next few days.

Tim