This was originally posted under From an Anonymous Sufferer...I tried to move it but something terribly bad happened...I lost it.  Glenng, I apologize, but I wanted to make sure everyone saw this.


Quote:

First of all I ask for your forgiveness if I am in the wrong place. I mean no offense to anyone. my name is Glenn and I live in Edmonton, Alberta, Canada. I am 40 years old and have been suffering with CH for 20 years. I guess the reason that I am here is due to my frustration. I believe that I am episodic as I have gone up to 2 years without an attack. i am not sure if it is the same for others but I get CH's on both sides of my head. For about the last 5 or 6 years they have occurred on my left side. For whatever reason these seem to be a bit more bearable. Unfortunately about 7 to 8 weeks ago they moved over again to the right side of my head. This attack or cycle is still going on. I may have up to 12 attacks a day, both morning and night. As I read the home page and the experiences of others I cried because I felt so much sympathy for these people, and am definitely able to relate. None of my tricks are working this time and I am so exhausted. The doctors continue to try different medications, but nothing seems to be working. I hate the light and I hate the dark. There is no relief anywhere. The only way I can get any relief is to do what I call extreme exercising, When I say extreme that is definitely what I mean. I will run as fast as I can for as far as I can, or I will do as many push ups as fast as possible until I almost pass out. If it doesn't work the first time I will do it again and again, finally the CH will let up. This attack has been different in that a new attack may start back up in as little as 15 - 20 minutes. Not only is the CH hard to deal with but the pain that results afterwards is also extreme. For example, my hair hurts, i know this may sound funny but it is the truth. There have been a few times when my dear wife of 10 years would walk up behind  me and gently run her fingers through my hair. This act alone would raise me off my seat and nearly bring ears to my eyes. I also wanted to say that I am 6'2 and 240lbs. i am a big strong man who fears little. I must be honest and say that these CH's bring me to my knees like a tiny child.    I guess that I am here because I don't know if I can handle much more. I fear sleep and I am running out of patience. My loved ones are worried as they see the effects of these unforgiving attacks. To all of you who suffer, my heart pours out for you. I am so sorry for your pain and pray that a better understanding of this condition comes forth as soon as possible. Sincerely,thank you for listening. Glenn

Your use of "extreme exercise" hints at the value of increased oxygen as an abortivee. Years ago, docs recommended this approach before the triptans, etc. apppeared.

Explore the oxygen button (left) and there are many folks here who will glad to answer questions.
=========
 
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]

Hi Glenn. Sorry you had to search us out but glad you found us. My name is Barry and I am a CH sufferer.

My abortive is 100% o2 with at least a 15lpm regulator and a non-rebreather mask, no outside air and get on the o2 at the very first sign of an on-coming attack.

My prevent is 480mg Verapamil daily, under the watchful eye of my neuro.

You are not alone anymore with this!

Welcome to your new home.

  Barry :)

Glenn-I am so sorry for your battle this go around.  I know that you are exhausted and discouraged.  Please read, read, read on this site for tips and understanding.  It will get better as you explore and try alternatives, though I know that is also exhausting.  You will get better, but I know it is hard to see right now.  Hang in there for that wonderful moment of relief that will come.  I am using Zyprexa for the first time during my currant cycle and it has been great for me so far.  It gives me relief for 24 hours or more.  Thinking of you.
-Joni

31 year episodic sufferer here.....I hear you. What an awesome feeling to come to a site like this, where there are 10,000 people who know exactly what you're going through.

If the exercise helps a little, the 02 will most likely help a lot. The first time I aborted with 02 it felt miraculous. To be painfree in 6-8 minutes...wow! Do reas the oxygen info tab on the left as it must be used correctly to have it work well.

Welcome home.

Joe

What Bob, Barry, and Joe said!  O2 as a first line abortive.

For a prevent, if Verap is not working for you you might want to look into Kudzu.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; You will find a good bit of info about it.  There are some drugs that do not react well with it, but it works pretty well for me.  Doesn't stop them totally, but have had only a handfull higher than a K7 in the last couple of months.

Another abort possiblility is an energy drink with Taurene in it, i.e. Red Bull, Monster, 5hr Energy, etc.  Slam one down at the first sign of an attack.  I will knock one back pretty quickly for me if I cannot get to my O2.

Jerry