It's been bad lately....Yesterday, my wife wife would not take no for an answer after back to back episodes, and she made me go to the ER.
I've been having these "headaches" now for 8 years. Never fewer than 1 per week, and usually about 2-3 per week. Almost always occuring between 6-8 PM, and occasionally during sleep. I can (until yesterday) pretty much set a stopwatch and know that it will all be over in 30 min on the dot. It starts with a twinkle of pain in my left temple and within 3 min I'm in full blown 10 on the pain Richter scale writhing in agony. I don't throw the 10 around lightly, as I'm no stranger to pain. At age 36 I have lived an adrenaline fueled lifestyle full of gnarly wipeouts. I've broken both legs and both arms twice!!!The only pain that was comparable to my headaches was when I snapped my collar bone the second time playing ice hockey.

Eight years ago, I got into a minor physical altercation with a co-worker that I got the better of. About 30 min later, he came back and hid beside the storage bin with a thick steel piece of gas pipe and proceeded to beat me nearly to death with it as I stepped out. My skull was cracked in 5 places and my sinus passage had been badly damaged. When I came to and tried to blow the blood out of my nose, blood squirted out of my eye. Ever since then, I've been dealing with the most extreme pain I've ever experienced on a regular basis.

I am the kind of guy who only goes to the doctor when I break something, but after a few months of the headaches, I finally went to see a doctor. Looking back now, I remember him telling me stories of his own brief bout with cluster headaches, but he never said that was what I had, so I never did any further research on them at the time. He sent me to a neurologist who proceeded to put me prescription meds to deal with the migraines. He tried 3 different ones and none of them helped my headaches. All of them made me feel like a zombie. I only remember the name of one which was depakote. I quit taking the third pills he gave me and never went back again. I just accepted the fact that my head had been smashed one too many times and I would be dealing with the pain forever.

Since then I have been blessed with the best wife I could have ever dreamt of, and she does her best to help me through the pain.(I met her about 3 months after the head injury, so she has been through my whole experience with me) All she can do though is make sure I always have a cold pack available and bring it to me when I get the first shadows of pain. She can even see it coming because the vein in my temple swells and pops out. It's become instinctual for her to look for, and spot early signs.Lol, I knew for sure the two of us would be growing old together a few years ago, after a motorcycle accident and a week in the hospital she brought me home and had to take complete care of me, which included cleaning my back side. EEEK!!! But she did it all with a tender and loving touch, and has been very supportive of my life pains.

The last few months have been particularly bad. While I've never gone more than two weeks without a headache, I usually only get 1-2 per week. Lately, however, they have been at least every other day, and often on back to back days. Yesterday was wierd, because I had one at noon. They usually don't attack me until evening. Then after about 45 minutes of relief, I got another one that lasted 1 1/2 hours which has never happened before. It was then that my wife finally said "bullshit!!!You're going to the ER!!!" She mentioned our three daughters and wondered what they would do without me. I finally reluctantly went to the hospital.

By the time I was at the hospital, of course the headache was gone. That was a good thing, because it's not like I was looking for pain relief, so they knew I wasn't just a junkie, I just wanted to get a head scan to make sure there wasn't a tumor or something like that. Scan came back normal, thankfully, I guess. The doctor asked alot of questions and then went to call a specialist friend of his. He came back a little while later and said that they believed I had chronic cluster headaches. He said that the absence of any recession periods was rare, but that it is possible to have these headaches without the breaks. He prescribed a med that lowers your blood pressure and said that some people have had success with that. He also mentioned oxygen but said that may be the next step if the other meds don't work. I'm afraid to take the meds because he warned me of dizzyness and light headdedness, and I work in construction, and spend alot of my day on a ladder.

I came home last night from the hospital and was up till 4 AM reading this site. The first time I read through the front page it had me in tears. I couldn't believe that other people were going through exactly what my wife and I go through on a weekly basis. The descriptions were almost word for word, the way I try to explain my headaches.

Here's how my episodes go:
- Get first shadow of pain
- Vein in left temple swells and pops out
- Within three minutes pain starts near my temple and feels like an ice pick slowly being pushed into my skull
- It slowly gets tweaked and heads for the back of my eye socket, then travels down behind my ear and down my neck a little. It never leaves the temple and the eye, just keeps growing.
- By then, I hopefully have a cold pack that I am pressing into my head as hard as I can and I'm writhing in pain
- I lay on the couch or my bed and kick and punch the poor piece of furniture and myself for some hope of a distraction from the pain that can't be stopped. Last week I nearly broke the armrest off of our couch from pushing it with my legs.
- Thirty minutes of this nonstop, and then...
- It's gone!!!  I put the ice pack back in the freezer and go back to my daily routines a little drained.

So far no attack yet today, but the night is still young. If not tonight, I can pretty much guarantee tomorrow it'll be back. One thing about my little devil, he never let's me down, he always comes over to hang out for a few.

Johnzo...

Given your history, especially the head trauma, really would encourage you to find a headache specialist.

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
=============
In any case, starting to learn the basic of cluster will help. Suggest printing he entire article and then, also, exploring the buttons (left) starting with OUCH and the multiple internal links there.

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]

Regarding the safety of O2: ask Batch, he knows all about it.

Bob, thanks for taking the time to address my situation. I'm trying to understand your point, but it's kinda vague. Are you saying that since I have anxiety, I am some kind of wuss that can't handle, or has an unreal perception of pain? I work in construction, and I have had plenty of painful experiences like smashing a thumb with a hammer or removing deep splinters from my hand by doing a little on site surgery with a razor and tweezers, and I don't wuss out then, I just tape it up and go back to work. I consider myself a pretty tough guy. I also don't see any mention of the long term pot use that you mention in the beginning. Am I missing something?

BTW I'm not pissed or anything by the comments, so don't get the wrong idea, I just don't really understand what you are getting at.

Johnzo...

Cool, thanks for the clarification.

While I am very reluctant to take western meds because of the side effects that I have had in the past, I am not close minded to them just shy away from them if you will. When I was young, I was unable to go into crowded places without feeling completely sick to my stomach. I would get nausea, vomiting and diarrhea almost instantly, and would have to run for fresh air or a bathroom. When I first started smoking pot in high school, I noticed that it took the edge off. It didn't make my anxiety go away, but I was at least able to go out to a resturaunt without getting sick. In my mid twentys, my cousin mentioned that she had started taking paxil for her anxiety and said she had remarkable results. I went and got a prescription for the paxil, and within 1 month it was like a miraculous change. I have been on paxil ever since (20mg/day). I have tried to wean off the paxil a few times when I was feeling confident that the anxiety was gone, but it comes back just like old times. The pot had become such a part of my life routine by then, I wasn't interested in quitting. My lifetime of extreme sports and associated injuries has left me with a lot of pain and the pot definitely helps ease my everyday aches and pains. As I stated before I don't like taking pain meds unless I'm recovering from surgery or something, I prefer the natural alternatives if effective. I would also not want to get hooked on narcotics. While I am a longtime pot smoker, I have never been the party type of guy and didn't even start drinking till I was in my mid 20's. I have never done drugs such as coke or meth and never will. I have had shrooms back in the day a few times and the talk of them possibly helping is interesting.

Well, I kinda got side tracked, as this isn't  an anxiety BB, but maybe it all ties together somehow.

Thanks again for your time. I am amazed when people go out of their way to help someone that they don't even know. Whether it be on this forum, or in the real world, I will repay the kindness extended to me to someone I don't know as well.

Johnzo...

I am going to try the O2. I though I read somewhere that it could cause lung problems with prolonged use, but I can't find that quote anymore, so I must be mistaken. I've read so much info over the last couple of days so I was probably reading about something else.

Thanks Marc!!

Johnzo...

Welcome to the board! Glad you found us. You won't find too many judgemental people on the board, but most will warn you about pot while on cycle. It's a vaso dialator (sp?) and many find it to be a nasty trigger while on cycle. Pot and alcohol are 2 of the more universal triggers while on cycle.

Oxygen has become my first line abortive. Imitrex worked great but I hated the side effects and worried about its long term effects. 02 works damned near as fast with no side effects. As to the lung damage, there were scattered reports "way back when" that prolonged exposure could eventually harm your lung linings. More recent research disputes that, we have a pilot on the board that would breathe pure 02 for hours at a time while flying fighter jets and is none the worse for the wear!

Do take the time to read our oxygen link on the left side of the board as how you use it is critical to its degree of success. Then visit   Clusterbusters.com      for more detailed information on the alternative treatments many find success with.

joe

One comment before moving to my main point: Pain meds are not used regularly to treat CH. Those meds which are our mainstays are not addictive, have few/easily managed side effects, if they appear. So let's not close that door until we have focused on treatments.
========
You have now outlined three major medical issues which are all interrelated: lifelong anxiety; head injuries; now, headache. I don't believe that you can treat one issue in isolation from the others and expect good results.

Ideally--you could find a neurologist who can both handle the head trauma issues AND headache. But that may be a hard combo to find in one person but the right guide can help you.

The issue of no insurance is first step to handle.
 1. Suggest you talk to a medical social worker at your hospital; or at your social services agency; or contact United Way office for leads. MSWorkers have the knowledge to tap into medical services and may be able to guide you to free/affordable medical services.

 2. Also ask the MSW about sources of good counseling for the anxiety issues. A lifelong pattern will be tough to handle but your success with Paxil is very encouraging. This class of meds has become a mainstay for anxiety disorders and they will, as you have experienced, free you from anxiety sufficiently to engage in the relearning (talk therapy) which is necessary for long term, enduring change. (And long term use carries no real risks. Many people use them for many years.)

As you have commented, folks here will standby you. The exchange fee is that you give as you can for this is a growing family which needs many hands on the oars. <bg>

Heed Bob's advice.

You have several issues that need to be addressed together.

headaches can increase anxiety.
highs and lows of anxiety can add to headaches...

trauma can mean several additional problems.

get clear cut advice from professionals hopefully specialists.

good luck