Hi everyone.
I am a long time sufferer of CH. Started when I was 2, and now I am 41. The doctors tried to label them as Migraines, just really bad ones. I do get migraines on occasion (light and sound sensitivity, ect) , but the "bad" ones are really different. Was taken to a lot of doctors when I was little for jumping off the stairs hitting my head as I go down to stop the pain (I was 4 at the time). They thought that was a little extreme.  Along with banging my head on walls, and even remember something about a hammer one time. I went to specialists all over TX back then. Had x-rays, scans, poked, prodded, ect.  So, they gave me some type of "knock out pills", forget what they were called. And it helped till I woke up and they started all over again. Missed a lot of school too. Then they stopped when I was about 14. (could have been me and my friends  experimenting with mushrooms and other substances, but quit all by the time I was 15).

After that I had an occasional day here and there with them, but for the most part, they went away. They were rarely above a 6/10.

Flash forward to the age of 39. Just out of the blue, everything changed. Went for 2-1/2 months of pacing, a dozen trips to the tub a day (soaking in the water seems to knock it down a few notches), screaming, throwing things, and just really loosing it. I ended up in the ER. Again, they tried to say it was a migraine. Told them no, it was a cluster, but they are the doc's right? Most of them read my VA charts and think a CH is a bad migraine. Finally found a doc in the ER that knew exactly what it was and knew a lot about them. He gave me Zomig (5mg) and 30 min later, they were gone for the day. Amazing... Imitrex does not work for me. But the Zomig does. The drawback to it is that it puts me into a drunk like stupor. I loose all energy, and can't function the rest of the day. Feel like a dead battery. But hey, it sure beats the pain.

Since the Ch's restarted, I have not been able to work much. They come and go. Then I got some bad news a few months ago. The VA (my medical provider since I lost most of my income due to CH's) stopped providing Zomig. They changed up to Imitrex. Apparently, the Zomig works on migraines, and Imitrex does too. The cheaper one they kept, the more expensive one they did not. But what about people like me that have CH's? Guess that wasn't factored in since there are not that many of us with them verses migraines. Yesterday and today I had one of the worst set of headaches yet. My Zomig was gone, and I tried the Imitrex again. Took several and no relief at all. Went down to the ER at the VA today (10am-4:30) and kept getting the run around about Imitrex does the same thing and it was probably a bad migraine. Even had a nurse say that it was allergies since my nose was really runny. Finally found a nurse who really cared and tried to help. She got a doc to get ahold of the pharmacy to specially re-order Zomig (for me) and give me what they had left in stock. Got a refill for 5 lots of 9 pills, plus the 9 I got today. Now I am somewhat recovered, and really worn out from another day of CH's. The "shadows" are there and tomorrow, I will again have no energy after taking my Zomig, but at least I won't be dancing, throwing things, screaming, thinking of digging my eyeball out with a fork, and having really bad thoughts. So, I figured I would finally register on this site and post my story. My wife has been really supportive and she found this site. Glad to be among others like myself. I hope to find other treatment opinions on here and try them. The only thing that I can say in my experiences that works for me is Zomig, Afrin SC , and pepper spray. Plus a great supportive wife who won't take no for an answer at the hospital.

You "took" several Imitrex--suggesting you had the pill form. If true, then need to change to the injection form. Pills are too slow acting for many CH folks.

Both Imitrex and Zomig are in a class of meds which are good for cluster although there may be some individual variation in response which requires a change form brand to brand.

If you are stuck with the VA, then print out these articles and use them as discussion tools with your docs. It's very common for many docs to have no useful training in complex headache disorders and so it often take multiple doc to find the right soul. This is not your fault but it is your burden to press on until you find the right person!
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PDF file below.
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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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As you have time, explore the buttons (left) starting with the OUCH site and its many internal links.

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Yeah....time to take a GIANT step backwards and re think how you treat your CH. Rather then curling up and going defensive it's time to attack!! I use a 2 pronged approach, I'm 50, male episodic for the last 31 years.

1: A good preventative medication. This is a med you take daily to reduce the number and intensity of your attacks. I use Lithium at 1200 mg a day. Takes about 10 days to become effective but once it's in me blocks up to 70% of my attacks. Verapamil is a very common first line prevent and effective for many here. Topomax has a lot of loyal followers too.

2: A good abortive. The attack is starting, now what? Your first line abortive should be breathing pure oxygen, with a non re breather mask, at a flow rate of at least 15 LPM. I can abort an attack in less then 10 minutes just huffing pure 02. Read the oxygen info link on the left as it must be used correctly. Imitrex injectables are effective but expensive and in my opinion no faster then oxygen. But I ALWAYS have an injector with me on cycle if I'm away from my oxygen. ;)

For now get you some energy drinks. Red Bull, Rock Star, any containing the combination of caffeine and taurine. Chug one down at the first sign of an attack. Many can abort or really reduce an attack this way.

Doctors will not help you much with this condition. It requires you take charge, educate yourself and work with a doc to get what you need.

Based on part of your post, check out    clusterbusters.com    your use of those substances is probably a big part in the headaches stopping. A suprisingly effective treatment if you are so inclined.

Welcome to the board, let's get you to stop hurting so much, that sucks. :'(

Joe

Great post Joe.

Glad to hear your wife found the site for you. I too found this site some years ago and my husband Guiseppi has become one the biggest fans (if not a disciple for all that is preached here!)

Be sure to let her know we have the "Supporters Corner" where we spouses/supporters collaborate when we know our loved one is at his/her wits end.

Welcome aboard!

Christy

Uh oh...well you're not alone in having been wrongly prescribed imitrex PILLS for cluster.

We see it all the time here. It's not the imitrex that isn't working, it's the pill form that's the problem. Injectible is VERY effective though - you might wanna give it a go.

I'm certainly not alone here in using O2 a la the "oxygen info" link to the left of this page as my first line abortive, imitrex as the ace in the hole if needed.

(BTW, I wouldn't be at all surprised if it was the mushrooms that stopped your cycle as a teen. Actually I would be very surprised if it wasn't the mushrooms.   :))

Oh yeah and your wife rocks.   ;D

Howdy Neighbor!!

Sorry to hear the beast is havin his way with you!!

Check your PM's

Dallas Denny

Thanks for all the info. It sure helps. My delay in the reply was as you probably already know, the large fork coming out of my the back of my eyeball. Feeling better today though. I cannot try all of the suggestions at once, but will try a lot of them. The wife picked up some Red Bulls for me and I chugged them. Seemed to take the edge off when it was starting. Working on getting the oxygen at home. I have an appointment next week with my primary VA doc. Hopefully the oxygen will help.

On the mushroom thing. It does make sense. I had them, till I went through a stage of teen drug use. I did not take the mushrooms for headaches, but for fun. That was 25+ yrs ago. But if I look back at the time line, they stopped around the same time. I was told by the docs back then that I would out grow them. Never realized that the mushrooms might have done something about it. I am not a fan of the shrooms, nor do I really want to do them again. A bad trip is about as scary as a CH. Not as painful, but really scary. Had a "bad" trip the last time I did them at the age of 14 and never did them again. Stopped doing all drugs and went through treatment for them. Been clean ever since. So, I am a little hesitant to try them again. If the headaches get worse and there is no other way, then I might change my tune on that one and seek them out once again. I guess the more pain I am in, the more I might compromise.

(Bob) I will go through the documents that you posted and check them out. I am about a 3/4 right now, but when I get to a 2, will read them. Thank you very much. Any docs about these things will help a lot at the VA.

On the injections, I did try the nasal Imitrex in the ER once and it did not work for me. Will the injection type Imitrex work better than the nasal type? If so, is it a big difference? Do they go into the vein, or muscle? Can I give them to myself or do I need to go to the ER for them?

Thanks for all the help. Glad that I can meet others here that know what I am going through. I try to explain to others, and they just keep thinking headaches need asprin and rest. My friends and family, I send them a link to Youtube to look at "Artonio7" having one. Glad he posted that. It sure helps my friends and family see what goes on when I am having them. Like looking at yourself in a mirror. I never thought of recording them in video. Don't think I will since he seems to have done a decent job of that. Thank you everyone for all the help so far. All is appreciated.

Hi Tom, sounds like you're on the right track. Imitrex injectible is much more responsive than nasal. You self-administer - the contraption is one of those spring-loaded things that you hold down and "shoot". One of the CH'rs can come along with some additional tips for you.

Hey Tom,

Yep you self inject the imitrex right at onset of the attack - not into a vein, but like your regular old "shot in the arm" type deal.

The inhaler might've actually worked for you if you used it at onset, but since you were in the ER I imagine you had a full blown attack already going on before trying it

You'll wanna refer to this imitrex tip if you get the injections, it'll dramatically help stretch your doses and lessen risk of side effects/OD:

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

Injecting in the abdomen, like a pinched bit of belly fat on the side of the navel - is much less painful than the arm according to my experience, and I've seen report the same here. It's easy - I don't even grimace or flinch or hesitate or anything. 8-)

About the shrooms - understood about your bad trip experience. One thing to keep in mind though is that a sub hallucinogenic dose is reported to be plenty 'nuff for CH.