Hi everyone,

22 yr old living in Canada. I started experiencing my headaches when I was 17; they've been getting progressively worse ever since. I was in a semi-serious incident when I was 12 (seven stitches to the side of my head, don't remember much of that day).

Anyway, I'm sitting at home miserable; missing work yet again so I figured I'd sign-up here and introduce myself. No-one seems to understand why I complain so much about the pain. Until recently my doctor has told me I have migraines. Now that he has diagnosed me with cluster headaches I've tried several different prescriptions and made changes to my diet, lifestyle, etc. The most recent trial was nortriptyline (20mg daily) for about a month now. I haven't had any side-effects nor have I seen any change in the frequency or intensity of my headaches. I'm going in for a follow-up in a couple of days. Will probably be trying something new yet again. I get my hopes up every time but no luck so far.

Just so sick of it all. I get at least one per day. Sometimes lasting for several weeks. The thought of it getting any worse scares me. Any time I have without a headache I spend worrying about when the next one will come.

Thanks for listening; I've never met or spoke with anyone else who has cluster headaches but I look forward to doing so. Here's hoping.

-Jen

Well thank goodness you found us. We hear far too many stories like yours of doctors throwing darts against the wall trying to "discover" something that will work.

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First off, read this link, then get oxygen prescribed. I went from 90-120 minute rides, to 6-8 minute abort times huffing 02. I feel that familiar tingling in my neck, pressure in my ear, and the beasty starts to creep in. I fire off the oxygen, 6-8 miinutes later I am pain free. Should absolutely be your first line of defense. Been a real life saver for so many on the board. It's cheap, fast, and no side effects. Hopefully some of your canadian brothers and sisters on the board will chime in with area specific advice to get you hooked up.

Imitrex injectables and nasal sprays help many, I use the injectables if I get caught away from my 02. They're expensive and I don't like how they make me feel but they sure whoop the beast quickly.

For now go pick up some energy drinks. Red Bull, Monster, any witht he combo of caffiene and taurine. Chug it down as fast as you can when you feel an attack starting. Will abort or reduce attacks for many.

Are you working with a headache specialist neuro yet? GP's don't know squat about CH, garden variety neuro's aren't much better. We've seen the best results from headache specialist neuros who have the specific training on our "disorder!"

So glad you found us, let's see if we can help you not hurt so much.

Joe

Hi and welcome, sorry can't be of much help as still getting to grips with it myself, noone seems to understand this condition, especially family and friends, they all understand the word pain, just nit the degree of pain, my GP doesn't seem to know the condition either  :-[

First, start to learn about CH. Knowledge is your best defense, especially since it's difficult to find competent docs.

First, I'd suggest the first title:

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This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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See the PDF file, below. Will give you a tool to discuss treatment options with your doc. What you are on is NOT for Cluster.
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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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If it's possible, suggest you find a headache specialist. Most doc have very little training/direct experience with complex headache disorders leading to poor diagnoses and out of date treatments.

What follows is for the U.S. market but most are tools you can use.
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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. 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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Hey Jen.

What Joe said. 8-)

Clearly it's time for you to get some real relief from these attacks, and hoping a doctor will provide the answer is a prescription for a whole lot more pain.

Guisseppi/Joe isn't kidding about the O2 thing - legions of members here have found great success aborting attacks with O2. Personally, if I don't have a preventative working and need to be aborting attacks I'll go to the O2 first, and have the very powerful imitrex injection on hand as a back up.

More and more of us are getting fed up with these attacks and we're now "busting" our cycles with nature's extremely effective preventative, which Harvard Medical (and other) studies are showing to be psilocybin and the like (!). Here's a Newseek article on CH and busting to get you oriented a bit:
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Hi Jen,
WE understand you and a very warm welcome to you!
I am very glad you have found this place so soon in your young life....
I have suffered for 11 yrs before finding this place, many have suffered 20-30 years,
and some a lot longer....

We will make sure you dont suffer as long.
There is all the info you need and all the support we can give you here...

You have just joined a Great TEAM Jen.

Best Wishes and Respect

Gary

Batty wrote on Feb 15^th, 2011 at 1:32pm:

I have suffered for 11 yrs before finding this place, many have suffered 20-30 years, and some a lot longer....

Thankfully the internet age means more information is on hand to help now so hopefully sufferers wont ever have to suffer such huge lengths of time as this, and thank the lord for good places such as this for support and sharing information.

Thanks everyone!

I started researching a few months ago but it is indeed hard to find reliable information on CH.

I have read up on O2 and will definitely make a point to mention it later this week at my appointment!

It is frustrating when your friends/family don't understand (or believe) the degree of pain involved but at the same time I don't think I'd want anyone to be able to understand because they would have to feel it to fully understand.

Thanks again for the warm welcomes; made my day less depressing for sure :)

Jen, you'll always find supportive people here. I'm glad you found us. Be sure to print out the info Bob Johnson posted along with the O2 stuff to take with you to your appt. not all doctors are familiar with latest treatments (although kudos to your doc for recognizing CH!) and any info you can provide them helps speed along the process. O2 is so much cheaper/faster to stop pain/with no side effects than any narcotics or Tritpans they can prescribe!

Agreed with QNheart above - well except for one little thing - in my experience it's not entirely accurate to say that O2 is faster to stop pain than an imitrex injection. It certainly trumps every pharmaceutical abortive in the nontoxic-ness dept. though.  8-)

Can't add much to the great stuff above. Just wanted to say that while there isn't much difference (I think) between nortriptyline and amitriptyline, the latter seems to be slightly more effective, so I've been told. It's just a tweaking of what you're taking along with other preventatives. Make a list of everything you've read, and bring it with you to your visit. A good dr will want something effective, not just something he/she is comfortable with. Blessings. lance

Hi ther Jen I'm a newbie here too, but many years into the CH cycle. I, like you, came here seeking advice and just people who truely understood. I cvan only say that this is, without question, the place to be.  ;)
I see my Neuro in a week or so and, thanks to these guys, I have a lot to discuss with him.
If you haven't had a look yet, the clusterbusters site is also informative and may well get you thinking slightly outside the box.  :o
Any how, all the very best of luck and I hope things get better for you. I'm certainly making the most of my current CH free period, even with the intermittent background headaches.

Wow...so I got home the other day to find a letter from my doctor's office stating that my doctor has chosen to leave the province so I'm now out of a doctor  :-[

After having a mild panic attack (combined with a terrible CH that's been going on for the past four days) I remembered I still had one more appointment scheduled. So my gameplan was to go in and tell him what I NEED instead of what I WANT to try.

So long story short, here's how it went:
I told him I needed a prescription for oxygen (and brought a bunch of info I had collected on the subject). He said that he couldn't do that but he would not tell me why...which was quite odd to me. He prescribed me topamax as a preventative measure as well as percocet for severe CHs. I have no idea why a doctor would prescribe narcotics to a young girl before oxygen. Personally, I don't want to get mixed up in narcotics. The thought just scares me.

Some good news though:
He referred me to a local neurologist. Now I just have to sit by the phone and wait for the call I suppose.

Has anyone used either topamax or percocet before? I'm so confused. I've read so many mixed reviews on both of these medications.

JenElizabeth wrote on Feb 18^th, 2011 at 12:20pm:

Wow...so I got home the other day to find a letter from my doctor's office stating that my doctor has chosen to leave the province so I'm now out of a doctor  :-[ After having a mild panic attack (combined with a terrible CH that's been going on for the past four days) I remembered I still had one more appointment scheduled. So my gameplan was to go in and tell him what I NEED instead of what I WANT to try. So long story short, here's how it went: I told him I needed a prescription for oxygen (and brought a bunch of info I had collected on the subject). He said that he couldn't do that but he would not tell me why...which was quite odd to me. He prescribed me topamax as a preventative measure as well as percocet for severe CHs. I have no idea why a doctor would prescribe narcotics to a young girl before oxygen. Personally, I don't want to get mixed up in narcotics. The thought just scares me. Some good news though: He referred me to a local neurologist. Now I just have to sit by the phone and wait for the call I suppose. Has anyone used either topamax or percocet before? I'm so confused. I've read so many mixed reviews on both of these medications.

   Bag the Percocets and demand Oxygen at 25lpm+.

             

As far as popularity goes for prevents, Topomax typically ranks third, seems to be Verapamil, Lithium then Topomax. That being said, many on this board swear by the ability of Topomax to work well as an effective prevent.

Bag the percocet. Does very little for the pain, and the risks associated with addiction are very high. A doc who prescribes that knows NOTHING about CH.

Joe

hey jen
i know whatyou been going through. After 10 years of headaches i have just found out i have ch. most doctors dont know about ch so they normally diagnose migrains. I have found that verapamil helps, but only if taken before an attack it does not abort attacks. i am new to this board too so my advice is from a pure novice view.This site has also become part of my coping with this curse, as you share with people who have been through this.
cood luck and keep strong
suresh

Hey Jen,

I feel for ya kid. But enough of this feeling scared stuff. for most cluster suffers the biggest fear is waiting for the next hit.

You need not fear the beast, But you must respect it, for it is a very powerful S.O.B

dont sit around and wait for a doctor to "FIX" it,
Time to put down those pom-poms and replace them with some boxing gloves!!!!

Get ur weapons in check, and get ready to take this shit on head to head, instead of sitting around waiting for it to kick ur azz again.

Best, Coach bill

coach_bill wrote on Feb 18^th, 2011 at 9:19pm:

But enough of this feeling scared stuff. for most cluster suffers the biggest fear is waiting for the next hit. You need not fear the beast, But you must respect it, for it is a very powerful S.O.B

If you're on a good prevent and avoid your known triggers you're doing about as much as you can to prevent the next hit. So have things to abort the next hit when it does arrive and get on with life. You need to make the most of life between the hits.

coach_bill wrote on Feb 18^th, 2011 at 9:19pm:

Time to put down those pom-poms and replace them with some boxing gloves!!!!

Haha very well put!  ;D

My mum works in a pharmacy and she spoke with several pharmacists about oxygen prescriptions and seems to think I'll have a difficult time with it but I'm still going to try!

And yes, I'm going to avoid the percocet at all costs in the meantime. Hopefully the topamax will have some effect and it won't be needed...keep dreaming right lol  ;)

Thanks again!

Topamax has helped some others...didn't help me, but I did lose weight! All the other stuff seems to work the opposite. Oh yeah, there's also that thing about memory and word retrieval becoming difficult, hence its nickname dopamax. I do pray it works for you, though. And if your doc won't prescribe O2 you may have to pursue an alternative nonmedical O2 source...like welding tanks. If you search this site for welder's O2 you'll find a bunch of info to help. Blessings. lance