Hello,
I am almost 23 and I have been suffering from chronic headaches for 8 years now. They started when I was 15 occurring then only during times of intense exertion. Then by 17 they were starting to happen daily mostly in the afternoon and evening. Once I became 19 they started to be there from the moment I would wake up till when I would go to sleep, 24 hrs a day 7 days a week. The frequency is still the same with the pain being there as long as I am conscience. (I do notice though that while I am dreaming I do not have head pain in my dreams.) But the intensity has increased slowly over time. I have been to countless neurologist and pain specialist over the years even some of the supposedly world renown clinics like the Diamond Head Clinic in Chicago and the one in An Arber Michigan. I do not have the long list of medicines that I have tried but they were mixtures of anti-seizure meds, anti-depressants, MAO inhibitors and of course pain medication. About 6 months ago I pulled myself off all forms of narcotics that I was taking for pain relief thinking that my tolerance had just got to high and the I was probably receiving a lot of rebound headaches. I then tried suboxen and naltraxone since I was off the opiates to see if they would in some way help block some of the messages my nerves were sending. But nope! Even several months after the painful detoxing the headaches are just as bad as they were when I was on taking the pain meds. I recently took a few doses of pain medication but it only gave me mild relief and last for an hr. My stomach is torn to shit from all the pills I have been told to take over there years and I am not looking forward to getting back on a regular dose of pain medication because it rips my insides apart and will start the vicious cycle of building up a tolerance and having to take more and more every time. But day after day of non-stop pain has worn me down and I don't think I can keep not taking anything for the pain because I can barely work and study. Not to mention I don't have the patience or energy to have any form of social life whether it be just enjoying a conversation with my family or trying to take someone out on a date. I feel like the pain has turned me into a hermit and I would like to atleast be some what comfortable for a few hours atleast a couple times a week if possible. I am tired of doctors just looking at me like I am faking it because I am in my 20s and they always seem to assume I am just doing this for the drugs it feels like. But before I step back into the opiates I was hoping that I could find some advice on something else to try. Besides prescription meds I have also tried all kinds of physical therapy, bio feed back, acupunture, nerve blocks, botox, electronic stim therapy and I am sure I am forgetting something. But if anyone does read this please, if you have any suggestions please let me know. I try to keep up hope but most days it just doesn't even seem worth living if I have to feel this way all the time. I sometimes think I am just prolonging my suffering. AND I am sorry I am sure there were a bunch of grammar errors in this but I wanted to get this posted and get reading on what other people have posted. Once again any form of advice is appreciated. Thank you!

I also just wanted to add I have tried the long list of migraine medicines and I am starting to doubt if I have migraines even though Drs say I do because non of them ever seem to work.

I'm not a doctor, just a Cluster Headache Sufferer. The fact you're in as much pain as you are sucks. Sadly, 99% of my knowledge is of cluster headaches, which by your descriptions you do not have. Sending prayers your way hoping you can find a neuro that's able to isolate what's making the head hurt.

Joe

Thank you Joe

Your story about finding the right doc is repeated over and over here. Not unusual to hear of people taking several years and as many docs to find the needed skill an experience. So, reconsider your frustration....

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.  Call 1-800-643-5552; 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.

6. 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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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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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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I'm confused, do you have migraines or clusters or both?

As to drugs, I see a lot of abortives, not not much in the way of prevents.  Has anyone suggested using oxygen?

im with delta. 02 is life saver.

Bill

Yes, I have tried oxygen, it will help me relax and slow my breathing but doesn't lower the intensity. Thanks for the suggestion though. :)

And thank you BOB_Johnson for all the information.

KevAn,

Your problem with oxygen therapy has a simple to fix...  You need an oxygen flow rate that supports hyperventilation and a good non-rebreathing mask... 

You need to be huffing and puffing like a steam locomotive... inhaling and exhaling as deeply and as fast as you can to hyperventilate...  That requires flow rates greater than 25 liters/minute... and a good non-rebreathing oxygen mask like the O2PTIMASK with a 3-liter reservoir bag to help prevent respiratory fatigue... 

If done properly, this should result in an average abort time around 7 minutes...

In short, effective oxygen therapy is hard work...  You can relax and breathe normally when the pain is gone...

Take care,

V/R, Batch

KevAn wrote on Mar 9^th, 2010 at 12:23am:

Yes, I have tried oxygen, it will help me relax and slow my breathing but doesn't lower the intensity. Thanks for the suggestion though. :)

Do you know what lpm it was at and what type of mask did you use?  Also, how far into the headache were you when you tried the O2?

Do you have any idea of what prevents you have been on in the past?  I'm really curious about the drugs that you've been on.  Quite a few of them are 3rd tier drugs (or not on the tier at all) when it comes to treating cluster headaches.

And I'm still confused, do you have clusters, migraines are both (or another form of headache).

FYI, here's the link to OUCH and it has a list of treatment options.

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Could you please describe one of your attacks, location of the pain, other symptoms, & duration? There are many types of headaches and knowing what you have is very important for proper treatment.

If you haven't yet, start a headache diary to help the Dr's and you.

Welcome to Ch.com, Don

I do not have cluster headaches, the neurologist I have seen in the passed diagnosed me with chronic migraines. As for attacks my headaches originally used to only come on during intense exertion. But gradually they became more and more frequent. They are now at the point where there is always a constant ache and pressure that is located in what feels like the core of my brain and reaches up behind my eyes between my temples. Working out or hard labor still intensifies them and if I continue to push it hard I will start to get dizzy and uncoordinated. I have had text done during workouts on a treadmill and my blood pressure and heart rate increase but not to any scary levels. I also was monitored to see if it could be a lack of oxygen that increases the pain during exertion but the machines showed I was getting plenty of oxygen into my blood stream. As for medicines that I have previously been on I will try to get the full list out and on here sometime tomorrow afternoon. Thank you all again for your help.      

Here's a link to some alternative treatments for both CH and Migraine.

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PF wishes, Don

KevAn wrote on Mar 9^th, 2010 at 11:26pm:

I do not have cluster headaches, the neurologist I have seen in the passed diagnosed me with chronic migraines.

Have you tried any of the migraine forums?