I'm seriously starting to wonder how people manage to live with this illness, or curse.

This cluster period has lasted 12 weeks now and is still ongoing, yesterday I had a headache attack that lasted 20h, it took me 14h before I was able to get to hospital and another 6h before they managed to break it.
I've been diagnosed with cluster headache, basilar migraine and tension headache. I'm 27 now and it's taken 9 years to get a diagnosis, till they figured out I had all three.

The basilar migraine can occur simultaneously as the  cluster one and chooses a pretty bad part of the brain to mess with. It can knock out movement (one sided), speech and eventually consciousness.
Last week that happened to me as I was on my way home from work and as I felt it coming and was in the middle of the woods I called 112 (SOS for those who use other numbers than EU), the nurse decided to send an ambulance and stay with me on the phone till it got to me. I was on the ground lost first the ability to move then talk. Some guy comes over and I'm thinking he would be able to explain to her where we are. I'm still conscious at that point but can't do anything.
He takes off with the phone instead... Ends the conversation with SOS and when the ambulance guys tried to call it he presses busy tone. I pass out and took them quite a while to find me. Police here decided to investigate the thing but haven't got anywhere so far. Just the feeling of somehow trying to survive this and ppl like this do not help...

In two days I'm going to another town to do an EEG and FINALLY get my own oxygen equipment. My only hope right now is that it'll get better having it. They've tried immigran, zomig, morphine (!!!), bamyl, veropamile, different types of over the counter pain killers and so far I only see any use of the oxygen.

How do people handle the mental health aspect? I've been at rock bottom a few weeks ago and just wanted to die basicallly and strangely enough as the illness gets inceasingly worse (I now have fewer hours that aren't on attack level than not per 24h) I find I'm getting better with that. Maybe just living on the hope that the equipment will help. But seriously how do you lot handle it cos I just suck at dealing with it...

I'm getting a nagging fear at the bottom of my stomache that this might become chronic. It's only been around 3 months tho so it's far from being able to conclude that, but I can't let go of the fear.

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A tough and complex history! So, firsts question is: are you seeing a doc who is skilled with complex headache disorders? The list of meds suggests some limitations--but more history along medical lines would be helpful.

Our collective experience says: learn as much about your coindition as possible. Those who don't have access to a sharp doc often have to educate the doc on how to care for us. (That, of course, requires a doc whose ego is open to receiving!)

We have much material to help with the learning but need some idea of what you need. Explore the OUCH site, left of this page. See: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
Robbins also has a book aimed at docs which is worth buying. Info at this site, too.
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Coping with the emotional strain requires developing some long term skills and, if you have access/$, working with a counselor who has a cognitive orientation is a good investment. The following is an introduction to this form of counseling and is a tool which you can use yourself. Note catalog source at the end.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Priority, in my view, is to insure you are working with a skilled doc. Too many folks wander for years trying to find well grounded treatment. If you want to explore your options now:

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. 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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And welcome!

Right now I'm enjoying a day with a kip ranging between 2-4 which is absolutely amazing after the worst week two weeks I've had in my cluster life where so far i've been counting the hours bellow 6 rather than above...

A question.. does a CH attack have to be on a 7+ to be a CH or can the lower ones that I've discarded as too low to really "count" (say 3-5.5) as a minor CH attack?

I've edited my profile now to add location, which I was hesitant to do as I'm unused to talking about this and wanted to do so as anonymously as possible. Anyway thing is I live in Northern Sweden in a pretty small place, to be able to see a specialist I have to travel 130 kms to find the closest neurologist. The two GPs I've seen have had very little knowledge of this illness except that it exists but have been humble  and understanding about it and passed me on to a specialist.

Now the problem I have with my specialist isn't his competence but rather his accessibility and manners. The wait list to seeing the guy is quite long and he left all the talk to his junior collegue and then came in for 10 min and set the diagnoses from what the other guy fresh out of med school had gathered, and left.

When I say manners I refer to that I saw him 9 years ago when I'd just turned 18 and had my first cluster session and I'd been sent there from the eye doctors who were puzzled over my headache issues. At that point he seemed more interested in touching my breasts than anything else... so I decided I had enough of doctors and their ilk.

The combo of "headache" diagnoses I have means I haven't had a painfree moment in 15 years. The lowest I reach is when I'm only down to the chronic tension headache which you can live with but it takes energy to always be in some degree of pain.

I've also been misdagnosed with more mental problems than I have as they've taken the stranger symptoms from the basilar migraine as "psychiatric" got misdiagnosed there with drugs that just caused way more problems than they solved. When the main problem was neurological + a depression as consequence of a rape (which they also ignored as it was cheaper to just medicate).

I've found a lot of helpful info on this site and am still reading. It's just one thing that I don't really understand and it's the constant need to stress the difference between migraine and other headaches... and cluster headache. I have both CH and a severe form of migraine and for me it's all just... Bad. Migraines have a pretty large scale and at least my neurologist refers to migraine and CH as a problem in "the same family of illnesses".

I used to think that Clusters were bad until I started reminding myself that my paternal greatgrand parents left the E coast of Sweden and tried to homestead the jungle in Brazil. Or just a different kind of grief???

Anyway: if you doc is open to receiving medical materials, give him a copy of the 50-page document I noted earlier.

Also, print out the PDF file, below. Since it comes from a medical journal, it will carry some influence.

Over the last 20-30 years migraine and Cluster have come to be seen as different in terms of many of the meds used to treat. Until this knowledge developed, Cluster folks failed to get good relief becaause some migraine meds don't work well for us.

You can also print out the full version of this article for the doc (and for your education);
--



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]
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The intensity of an attack does not affect the diagnosis--cluster attacks can range over a broad degree of intensity and it's only the distinctive pattern which makes for the diagnosis.

Diagnosis can be confusing for some docs who don't understand that it is possible to have individual symptoms from both migraine and cluster; some people carry both diagnoses. Makes for more difficult treatment, to be sure.

Can you explore whether it's possible to be admitted to a medical center/hospital with a good headache clinic for a good diagnostic work-up? I'm thinking about Karolinska Institure or somplace like it where they have the medical skills you need.

Individual triggers during a cycle vary greatly from person to person. I've never smoked, and being around smokers during a cycle won't bring on an attack for me. For many, strong smells, especially petroleum based seem to be common triggers. (They don't bother me!)

On cycle my triggers are alcohol, especially red wine, getting really hungry, sustained stress, and radical sleep cycle disruptions. Avoiding these triggers will lessen the number of attacks I get.

Joe

Being referred to a mental center is someting which your local doctor would have to arrange. Basicallyl, I'm suggeting that you consult with him about the need for a consultation, justified by the complexity and poor results with your complex medical history.

He would also know of a medical center closer to you. I mentioned Karo. only because it represents the kind of site which will have the level of medical knowledge/care which you need.

Yeah they've done a MR and said they found nothing (lol, all vacuum...) as they first suspected a tumour or similar.

The weird symptoms neurologists explain with the basilar migraine, as those vessels provide the brain stem... and once messed with all types of things can go wrong and in the long run can cause a stroke.

So when I have to ask for medical help I don't know if I'm to say I have cluster headache, which at least they have a vague idea what it is but is seen as entirely "benign" (cos it's our fault if we kill ourselves cos of the pain right?). Or if i should mention the migraine which tends to make ppl go "migraine? whatever, off you go"... problem is if the  basilar "vessels" (is that the English word?) get debilitated and eventually break it can get pretty dangerous. Can among other things cause a stroke.

Onother of my main frustration is that it's a gamble what flow rate they put me on. Anything from 2-20 litres. Often 5-6 saying I won't be able to take in more than 6. Can that vary depending on the equipment used or is this just nonsense? They always use a nasal thingy. And it always takes me forever before I'm in a state where I can start arguing about why 2 litres isn't enough. :p If I haven't already lost speech at that point. SIGH.

Anyway tomorrow I should get my own equipment, I just hope they've dug up some good stuff... Also today I bought a stock of Omega 3 and vitamin D3 and some cans of red bull. Where can I find the components in energy drinks without having to abuse sugar?

Ye loss of consciousness is tiresome. Was passed out for 9 hours once when home alone. My neurologist stared me down asking if that was really true. I was starting to answer when he said "Ye, I think it is. That can happen with this type of migraine." He then went on saying that "this type of migraine isn't good, not good at all" to his collegue. Which made me wonder what "not good" means when neurologists think something is "not good". Should I be worried?

Today I left church when I felt the need to start dancing about. Cba to explain... I don't want people to see me pacing, headbanging, rocking etc. I don't think that goes for these people in particular but in general Swedish and Japanese cultures tend to be the least allowing for "odd" behaviours, no matter the reason behind it... which tends to be an explanation for our high suicide rates cos we don't allow people to flip out at all.

In general I feel two things really help with this level of pain... one is oxygen, the second is feeling people care without being condescending or scared. None of my family or friends want to stay with me during a full blown attack though, I guess it's too heavy for them to watch. But it is a bit saddening.

Anyway I think you lot if any know what it means to have clusters for 9 years without having access to oxygen...

The more I think about it I fear I am chronic and been in denial. The pain around/behind the eye that feels like some invisible hand is is trying to tear it out... I have during a very long time thought of as related to the problems with my sight. If all of those are actually clusters then on one hand uff....... on the other hand maybe oxygen could be a solution. I didn't know until recently that a CH can be as short as 15 min.

Then what the hell are the 5-6 or 20h sessions with similar and more strange symptoms? If i understood my neurolgist right those happen when the CH happens at the same time as the basilar part of the brain BOTH go haywire at the same time. Good game... good flipping game, brain.
Once had that occur at the same time as bad period pains as well. Now THAT is painful. And nothing visible ofc.

It's a weird feeling to type this all down after so many years of hiding it...

Tussilago, I am new to this message board myself, but not new to clusters. I know all seems hopeless but I have been living with CH for over 34 years. My first headache was at 9 years old, just after my first major concussion. I was miss-diagnosed until I was 21 and that was after being tested and prodded for years. There is hope!

Keep your headache diary and learn your triggers. This will help you learn when they are coming on and take the steps to break the cycle.

My story,
Had a bicycling accident the spring just after I turned 9. Went over the handle bars of my bike, head first in to the curb. I was unconscious for a week. The headaches began about a week after I left the hospital. Crushing pain so intense I wished and prayed to God I would die. I would stick my head between the rails on my headboard, because that pain would distract me from the real pain. At the time this happened, 1977, nobody had even heard of CH and migraines were completely misunderstood. I went through more sinus surgeries than I can remember. Was the equivalent of a good nose blowing.

Fast forward to age 21, 3 concussions later (I was very active is sports in high school, hockey, soccer and baseball. I had two head to head hits in soccer, of course both in the same spot) I had gotten so good at dealing with the pain and my parents did not know where else to turn I just dealt with it. The only relief I could get at the time was with aspirin and that just took the edge off.

My cycles were pretty bad I guess. I had a headache pretty much every day for 2 or 3 months at a time...it would vary. That was how I woke up everyday of a cycle. Life sucked. A few days after my 21st birthday was the worst time of my life. I had a cycle begin one morning at a level 10 and it stayed that way for 18 days straight. Mine are either on or off. There seems to be no midway for me. I was living by myself at the time. One of my co-workers came to see why I was not a work, saw I had one of my "headaches" and left. I had gone absolutely insane from the pain and somehow ended up at my parents house. Till this day I have no idea how I got there. My mom took me to the emergency room, they gave me O2 and a pain killer. Did nothing. 2 days later it ended just as inexplicably as is came. The only positive thing was I met a young neurologist that knew what was going on and diagnosed me with CH. Treatment options at the time were non existent, at least it had a name, so I soldiered on.

When I was about 34, I was starting to go through some viscous cycles once again (they never stopped but I thought I could manage it) and figured I better go back to the doctor because I was driving to work and not remembering how I got there. Fortunately by now, the neurologist I went to see was a CH specialist. When I called to make an appointment they scheduled me for 6 months out until I told them what I suffered from...they saw me that afternoon.This doctor was right spot on. He could finish my descriptions of what was happening for me. Finally! I started a Verapamil regimen that night. After 2 days of taking that I woke up...no headache...next day, no headache...3rd and fourth day NO HEADACHE. The cycle was broken. I was good for almost a year. For the fist time since I could remember I didn't have a suicidal headache every other month.

I am 43 now and yes I still get clusters, however, they are less frequent and only last about 3-4 hours and not days in a row, just 1 day here and there. The pain is still the same though. My old friend still comes to kick my butt every once and a while but I am stronger than him. I'm not sure if it was the Verapamil or just getting older but I am able to manage the pain now with just Excedrin and it seems to help. Plus, what's 3 or 4 hours of suicidal pain? At least now I know it won't come back tomorrow...it might be the day after but I'll worry about that then.

Somehow I managed to fight through all that pain and still do. I has made my threshold for pain so high that once I had to get a tooth pulled and the dentist really didn't get the Novocaine in there. He pulled it...it hurt...but nothing like a cluster.

Also FYI. I have tried it all, O2, imitrex....the whole list. The thing that seems to work best on symtoms for me is Excedrin, THC (sorry but it works for me) and McDonald's...yes McDonald's...I don't ask. The Excedrin takes the edge off, so I can see and function, the THC makes me not care and gets rid of the nausea, and the McDonalds who knows maybe it's the grease or something. I don't care it makes me feel better.

You can do it...I still am...34 years later.

I have been wondering the exact same thing myself for the past few days. How do you all function at work and in society? The past cycles i have had were affecting my school, and as a high-schooler i did not really care if i missed some classes. But now, i am an adult with a full time job and i cant stay at work for one entire shift. I do not want to quit or get fired over my attendance. What do you guys do when you get a cycle? I have to ask because i am expected to work a 12 hour shift tomorrow and i have no more shots left. (apparently, my insurance only allows 2 shots per month. . . ) I have not yet gotten my oxygen. . . and when i do what am i supposed to do, drag it to work with me?

I really am curious what you all do during your cycle. . . do you just take a long vacation or something? Because i know there is no way you all actually go to work and FUNCTION with these attacks. . .

Kat. wrote on Jun 24^th, 2012 at 9:26pm:


I just go to work, just like other days. However I make sure I'm on my prevents plus have imitrex plus oxygen (in a backpack) that I take to the office or to customer sites. People know I might just walk out of a meeting or similar, when I go grab my CH supplies and kill off the CH. I normally just go somewhere private, be it an office or a stairwell. I then return in perhaps 10 minutes and carry on as if nothing much had happened. Then I make up any time, etc. later.

Brew, i apologize, i should have worded that better. I meant that i can not understand how exactly you all are able to do it. I did not mean to offend anyone with my choice of words.

I normally work Mon thru Thursday 10 hour shifts. Has never been an issue for me before. My "times" seem to be around 11 am and 2pm ish. So what happens is i get there at 6 30m, leave at 11ish.  . . go back sometime after 3 and work through the night to make up my lost time.

Last week was insanity. I ended up working 5am to 11 ish. then going back around 4pm until 10pm. I missed a total of 24 hours and made it all up by friday.

Today, it hit me just after 11. This time instead of going home i went to my doctor, who was on lunch. . . and the nurse sent me to the ER. The dr on duty there must have had some experience with CH before because he pulled me right back and gave me a shot no questions asked. He then had me wait around 20 minutes or so until after it was gone to talk to me about it. He wanted to make sure that i was seeing a specialist and i told him my situation. (just diagnosed, follow up next tuesday, MRI scheduled for this thursday, and out of my shots)

He offered to write me a script for anything i needed, including more immitrex. ( i dont need more scripts, i have a years worth. . . i just need my insurance to fill more than two shots per month)

In the end, he ordered me completely off work until after i see the neurologist next week. He said the stress of my hours and physical job is not helping my cycle. I HATE missing work. If i EVER miss work, i make up the time so i do not touch my vacation time. After today, i am inclined to listen to him. I am at the point that i am too afraid to drive myself anywhere, because i keep getting these "shadows" and they scare me because i know what comes next.

I am truly hoping that i can get a hold of some oxygen from my apt next week, and i am praying that it works for me as you all say it does. For now, ill stay home and listen to the doctor, at the very least, i don't want to be stuck at work in front of all the people i respect highly when the next attack comes. Maybe because i am new to the diagnosis it will take a bit longer to figure out what works exactly for me.

I've also been ordered off work. By ehm... four doctors. I haven't listened yet. I've started *thinking* about listening. After summer, after our staff crisis is over.

That made me just realise something. If I'm that hard to replace maybe I should stop being scared of losing my job! Cos even if they'd find someone it'd take at least a year before he/she can do what I do at this specific work place.

I also started thinking that I don't want my body completely messed up some years from now. My muscles are going to bits from all this not being able to move at times shit.

Forget what I said about CH being gone, I woke up after night shift with that familiar feeling. Hi2u... now GO AWAY :p

And Kat, u need to cut yourself extra slack till you got all your CH know how sorted out. Don't expect yourself to know how to live with and deal with this as well as ppl who've done it for years. If doctors say you need to take time off work then THEY know what's best for you. If your employer has an issue with that then they don't deserve you and they're not someone you want to stay with long term either. Take the time you need to sort it out till you got the map you need for this. I'm starting to get the CH under control, I just need to work out how to handle all my diagnoses together at once. That's proving tricky, esp as they can't agree on what I have :p

To answer the exact literal version of the question, "How do you live with this?"  You just do.  Everyone has a different life circumstance.  Different jobs, diffent cycles (episodic, chronic, doesn't matter, even the chronics have cycles within their chronicness aka high cycless) I don't work,  BUT regardless I still have 2 kids.  Life doesn't stop and wait.  Sometimes things can wait and sometimes they can't.  My kids are older now (10 &12) but over a decade ago when the ch's started they weren't!  You just find ways.  There will be times of frustration (to put it mildly  But you'll get through it And Keep on keepin on because clusterheads are beyond strong!