My name is Molly and I live in Oregon ----- Heavens I never even met anyone who understood what clusters are much less a whole community of them. I could cry -- Just to think I have a whole team who understand the *blank* I feel :(
I am 44 years old and I have had these for 24 years now. I am lucky as in as much as my series is every 4 years (almost to the date) BUT they are back ---have been back for about one week now.
And true to the last neurologists word they are worse then ever and appear to be getting stubborn and harder to break.
But at least i understand them more this time :(
I am needing some help here folks ------ you may understand me ---you may be the only ones ??  
The General Dr I have seen prescribed me what the Neuro Dr did 4 years ago did ( Topomax 100mg a day with hopes that breaks the series) and Imatrex 50 mg for the onset of the headache ----the insurance only covered 12 pills every 26 days ---- and they are gone. I tried to take only 2 a day and just live with the other headaches. BUT you all know after about a week of that --- well you know you start to go insane. If I go to the ER they will treet me like they always have ---like some narcotic seeking freak-sit me in a corner and by the time they see me my headache will be gone anyway. As for narcotics, I actually have a bunch of crud from a surgury I had reciently just sitting in a closet but i wouldnt even know the first thing about if that stuff would even work for this.
Tuesday when the Dr opens I will go back to him ----he seemed very understanding to this *insert dirty word* . And I think he would do whatever I asked to help me ------BUT what do I ask ?? what helps is there anything new after 4 years ---- I have 1 other option and that is wait 3 to 4 weeks to get to a neurologist for his help BUT by then my series *should and hopefully* will be almost gone.
Sorry this is so long ---- but I am in so much pain ---well not right this moment, but I will be in about 2 hours, and then again in about 5 hours, and then again in about 8 hours, and well you get the idea. I have such limited time to talk and ask for help :(
Thank you for listening ----- thank you for understanding --- thank you allowing me just to feel Im not alone.
God Bless you all - and may your life be free of pain

Your not alone anymore, Molly!

Welcome to the family, sorry you had to find us!

Tell your Doc that you need 02, with a non-re-breather mask at the rate of 15 LPM.

Dont settle for less!!!!!

Johnnie God Bless you -------
I wrote down exactly the way you wrote it -----
Im thinking your talking about Oxygen ???   BUT whatever it is- He will get it I because I wrote it down EXACT and you sound like you know what your talking about :)
A Million Thanks ---I will let you know WHEN I get it :)

Hi Molly and welcome to your new home. No more battling the beast on your own. There is a wealth of knowledge here and many, many people willing to help.

As Jonny and about 70% of us here will tell you:

100% oxygen with at least a 15 LPM regulator and a non-rebreather mask, no outside air whatsoever. Get on the oxygen at the very first sign of an on-coming hit, and remember you need to hyperventilate the oxygen as you are using it. If you let your hit start to ramp up before getting on the o2 it is much less effective. This is my main abortive.

For a prevent, I take Verapamil at 480mg daily, and this works well for me, but talk to your doc about this. A lot of different prevents are available, so it will take trial and error to find one that works for you.

Read all you can to your left and I hope you find your "magic cocktail"

Again welcome.  Barry :)

Hi Molly!!!  You'll never be alone again.  Welcome to the cluster family.  I'm so sorry to find that we are related.

It sounds like you have an effective preventative medication in Topomax.  As for your abortive...

Insurance companies are stingy when paying for triptans.  However there is usually a process for getting an override on the limit.  Get them on the phone and don't take no for an answer.

Once you find the process, it'll involve you getting a letter or other such input from your Dr, you file the paperwork and wait.  I managed to get Blue Cross Blue Shield to approve 24 shots a month using their Quality Care Dosing Override process.

Pills are too slow!!!  You really need to use injections or nasal spray to get faster relief.  An injection will kill a hit in 10 minutes for me no matter how far I'm into it.

I really recommend you look into Oxygen therapy.  It might sound crazy but I can abort a hit in less than 10 minutes if I get on it quick enough.  It can take up to 20 minutes sometimes.  That's still way faster than the pill route and, in most cases, just as effective as injections.  There are no triptan side effects either.

Occasionally I get a real barn burner or a hit that comes while I'm asleep and O2 doesn't work.  That is when I turn to my precious supply of Imitrex.  Thanks to O2 I'm only using a handful of injections each cycle.

There are a couple of threads on the medication board that are stickied at the top.  They were written by ClusterChuck.  Go through them and you'll learn everything you need to know; what the terms mean, how to use the equipment and what the script needs to look like.

Good luck and let us know how you make out...

-Dennis-

It'll sound like an echo........you're not alone, and get oxygen! I can stop an attack, and be completely pain free, in 6-8 minutes, by huffing pure oxygen. To work, your lungs must get ONLY oxygen, no exhaled air, no outside air, this is best accomplished by using a Non Re Breathing Mask, with a high flow regulator, at least 15 LPM, (Litres per minute). Nasal Canulas..(those stupid tubes up the nose) and re breather masks do not work.

You have much reading to do. You will get the best results by educating yourself...we'll help.......and then forming a partnership with your doctor. We'll be with you every step of the way.

Welcome home.

Joe

I just spent the whole time reading all the info to the left -amazing stuff. After 24 years of going this alone, and having no info much less doctors that understand. Usually you had to get to a Neuro -which takes awhile.  I tried 4 years ago with the BC/BS override for more meds and they shut me down so I had to ER it daily for injections (what a flipping joy that was) I am assuming that is going to be my path again ----- WELL that is if needed. I have very high hopes for this 02 path. And not to worry about me attacking quickly ---Lord I am having 6 a day now and I am just a tad PARANIOD ---LOL is that one ?? Is that one ??    LOL  
This Dr seemed so sympathetic and curious (lucky the Neuro wrote me out a very detailed explaination and told me to hold on to it along with my enhanced MRI results for my future series)
Not to sure if the topomax even works as it was prescribed at the end of my series last time so anything would have worked when series had run its its course anyway -----
I read something today I thought was so right on and something you cant even say to professionals  they called these headaches "Suicide Headaches"   I thought isnt that perfect -because for years I said man Im glad I have kids because if they didnt need me, Id be outta here -------I aint putting up with this shit anymore. BUT this was also before they had any treatment at all.  I remember my first ones (lucky it was only one a day) but they said well -----  heres a tylenol 3 ????????      
 
God Bless you all

This is the current practice on medical treatments for CH. Print and give to your doc.

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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For your learning:

 
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 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]