Welcome to the board! Very few have had success with narcotics as the mechanism of CH is just not receptive to painkillers, absent being put out with anesthesia.

Time to look at a more comprehensive approach rather then rocking back on your heels trying to fend off the hits, that sucks!

First you need to find a headache specialist neuro....even most neuros are clueless about CH. Absent that, a doctor who will work with you.

1: You need to investigate a good prevent med, a med you take daily to reduce the number and intensity of your hits. Verapamil is a common first line prevent, although we take it at higher doses then most docs are used to, some go as high as 960 mg a day to get relief. I use lithium while on cycle, 1200 mg a day, blocks about 60-70% of my hits. Topomax also has a loyal following.

Most prevents take about 10-14 days to build up in your system. Many of us do a prednisone taper, I do a 10-14 day regimen, 80 mg to zero, as a temporary block until my prevent builds up, often referred to as a transition med.

2: A decent abortive regimen. You mentioned using 02 in the past, read the oxygen info link on the left as many who have used it in the past with little or no success, have found relief when they changed HOW they used it. I can abort an attack in 6-8 minutes using 02.

Imitrex shots and nasal sprays work for many. If I'm caught away from 02 I'll do the trex injectables, but 02 is still my first line abort. Imitrex pills tend to take too long to be absorbed and don't work for most.

Energy drinks...any containing the combo of caffiene and taurine, I prefer sugar free red bull for taste. Chug one down at the first sign of a hit, many can abort or at least reduce a hit that way.

That's enough to flood your brain for now, welcome to the board, hoping we can show you some ways to relief.

Joe

Welcome to the board, glad you've checked in! Two suggestions, look into a home oxygen set up, it's cheap, convenient, FAST, has all but eliminated my use of imitrex. Then read up on Verapamil, has worked for many as an effective prevent.

And yeah, we'll never tell you to shut up, it's just a headache!

Joe

Hello everyone
                  I am new to this posting thing stuff so you'll have to forgive me if my typings off a bit. i've been reading some of the stories about CH and i was hesitant about writing this cause i've only had mine for 2 months.
       It's really nice to know that there are are people like yourselves that come together and tackle an issue such as this. A few months ago about an hour after i woke up i started getting a bad pain behind my right eye, i took some ex st tylenol and in about 2 hours it went away. Then within a week it was the same everyday only lasting longer. Now its got to the point where it wakes me up at night....everynight. Went to the hospital twice, to the optomologist twice and finally to the eurologist yesterday who told me i'm having CH. I chose HumptyDumpty because this time it doesn't seem like the kings horsemen can put me back together again...
                     Truly not meaning to sound so negative

           Hi Joe
                  the Dr has prescribed me prednisone and verapamil hydro to start. My next apt isn't for another month. Hope this works!
                  Thank you for your input

Hi to all here, I've been suffering from CH for the last 6 years. For the first 4 years i was getting cycles of attacks that lasted up to 3 months with attacks every nights starting about 45 minutes to an hour after a fell asleep at night, and milder attacks during the day. After many many visits to my doctor, she sent me to see a neurologist. By that time I had diagnosed myself as suffering from CH by searching through the internet. The neurologist tried a few preventatives that didn't work but eventually 2 years ago he started me on a drug for people who suffer from Epilepsy called Epilim Chrono 500 (not sure if the name of this drug is the same all over the world), this worked for a time at a dosage of 500mg/day but after 1 year the CH came back as regularly as before. He then put up the dose to 1000mg/day. Since then the cycles of attacks are more distanced and last for a maximum of 3 weeks to a month (instead of up to 3 months). The neurologist also prescribed ZOMIG for when an attack starts, this works at stopping the attack. However my doctor is quite alarmed at the fact that I NEED to take ZOMIG every night as it is not supposed to be taken for more than 1 week at a time due to the fact that it can trigger heart attacks.
I am so happy to have found this site and especially I have found the thread about the Vit D3 regimen as a preventative. I will be starting this regimen as soon as i receive the goods from U.S.A (they are half the price than in Ireland.
I wish to say a big big thank you to all the people who post on here and wish everybody well
Thierry   

Hi Batch, thank you for your reply. I hope you are well.
In one of your posts somewhere in the forums (i am not allowed to put the link to it in this message for some reason)
you speak of taking Vit D3, calcium citrate and omega 3 fishoil,
then further down you give a list that includes: Magnesium, Vit K2, Vit A, Zinc and Boron.
I am wondering if you take all the supplements in the list (vit D3, calcium citrate, Fish oil, Magnesium, Vit K2, Vit A, Zinc and Boron) or do you take just the 3 supplements on the photo in your hand (vit D3, fish oil, calcium citrate?) It would make sense to me to take the Vit K2 as it breaks down the calcium build-up in the blood vessels for use in bones.
Also does either of these regimens need to be taken continuously or just for a few months?
Thanks, All the best
Thierry (I know it is not a very Irish name, I am actually French, I moved to Ireland 23 years ago)

Hi Joe, thank you for the explanation as to why I wasn't able to post the link.
May I ask you another question please, : you say you take 5 tablets/day. I presume that you don't take the Vit A, Vit K, magnesium, boron and zinc then?
Which ones do you take?
Sorry for the questions again, i'm just so curious about this as it seems to have the potential to finally deal with the beast that is ruining many aspects of my life.
Thank you

Hi Joe, I hope you are well. Thank you for your further info and breakdown of what you are taking as a preventative. Unfortunately i can't get the kirkland product that you are taking so i will order the supplements separately from Iherb, that's fine too. It's a pity that costco does not send their products to europe though, i'm sure they'd get a lot of business that way.
All the best and Happy St Patrick's day from Ireland 
God I'm glad i don't drink. The country will be covered in puke today 

Hello all,
I am a 41 y.o. male that has suffered with CH for 21 years.  My headaches have followed the same pattern for those 21 years. They are always on the left side.  The pain starts,  what seems like, in the middle of my eyeball.  It is slight (about a 3) but has soon as I feel the pain "move" to behind my eyeball, it increases in pain to somewhere around 7 to 9 (I have only had a "10" a few times, which is always accompanied by vomiting).  My left eye tears, my left nostril runs and a vein at my temple on the left side becomes very pronounced and palpable. About a half hour into it I start to flop sweat.  Eventually the pain spreads into my cheek and sometimes to my molars.  The pain seems to then move to the back of my head.  When the pain "moves" to the back of my head I know that I only have around 20 to 30 minutes left of the episode.  Most often they wake me up after about 2 to 3 hours after I have gone to bed, but sometimes they occur in the afternoon and early evening.  The cycle usually lasts for 2 weeks nowadays, but 20 years ago it would last for months. Some of the headaches when I started getting them would last for 6 to 8 hours. I recently had my longest pain-free spell...I went from May 2011 to March of 2013 without any headaches. I am now in the 2nd week of a cycle.  I have tried many medications, but none have eliminated the pain completely (except for a crazy experiment I tried by snorting some veterinarian grade
Torburtol, which made the pain go away completely within 5 minutes. But I do not want to do this often as it is an opiate and i do not want to cultivate a dependence), but most medications dull the pain to tolerable levels.  I am thinking I need to keep some O2 at the house, as luckily, my headaches very rarely occur at work (Thank goodness as I work in a facility that treats children for behavioral disorders, I do want to think what a CH would be like in that mayhem). I am open to any suggestions. Unfortunately I have never been able to nail down any triggers except for alcohol.
I am glad I found this site and I look forward to the dialogue.

Hello Everyone, I am new to this site. I can't believe there are so many of you guys out there! I have always felt on my own! Wherever I try to explain my clusters to anyone else they always say "yeah I get really bad headaches sometimes too" but I know from reading other posts you guys really do know what I go through. I have been suffering from CH for about 12 yrs. I was misdiagnosed for the first 10 yrs with sinus headaches, migraines, stress etc... I was 16 when they started and I thought I was literally going to die from the pain, I still do sometimes. then I thought I was just insane bc they went away and I was fine. I was put on a lot of different meds that did not help the headaches at all. Every time they went away I thought they were gone for good, but they always come back at some point! Luckily during my last cycle I found my savior, a neurologist who diagnosed me with CH. He put me on verapamil and oxygen. The oxygen has been very effective for me if I can get to it fast enough. I honestly don't know how I made it without it before! I didn't have any CH for a 18 months, completely back to normal, then one hit me 2 weeks ago. I couldn't even believe it was happening and prayed it was just a fluke. Then a few days later 3 in one night, then 6 in a night and a few in the morning and before I went to bed. Now I am back in the hell that I hoped was gone forever. I am currently getting 2-3 while I am awake and 3-6 that wake me in my sleep. Thank God I had oxygen leftover from my last cycle, but sometimes I wake up too far in and it doesn't help. I am only getting a hr or so of actual sleep at night and now feel like I am going insane from fear of attacks and not sleeping. I am so glad I found this site. I can definitely relate to a lot of the stories I've read so far and they make me cry bc I know exactly what you are going through!

Hi Everyone!  Thought it was about time I came over here to introduce myself.  These headaches are making it hard to process at times so excuse my slowness and lack of words at times, my brain processes are different lately.

Anyways, I've recently just started getting my cluster headaches.  Starting around 4 weeks ago and only really remembering my 10+ pain episodes; 3 that have woken me up and 4 during the day, 2 in the afternoon and 2 in the morning.  I am not sure what is going on and if I am having multiple headaches.  But, I am getting them checked out with my doctor and she WILL be sending me to a headache specialist.  Currently the abortive TRIPTAN family tablets don't work for me and I have not tried the spray or injects but Dilaudids work as a last resort abortive.  And, my preventive is Topamax 25mg taken nightly.  Yesterday, May 31 I started 10,000 IU D3 regiment although 4+ years I've taken 5,000 IU D3 as I have Celiac Disease as well.  So hoping to get some relief soon.

Not sure if my Tuesday morning trip to the ER where I got a tablet of Prednisone helped or not but I have not had a 10+ pain Ice pick episode since then.  Thank god.  Although, with my daily headaches it feels like one of them could change at any time to the dreaded Ice Pick, they haven't yet and one hasn't woken me up since last Monday.  Hoping it stays that way!

Take care all.  And hope we all find our relief

Welcome to the board Colin. Your story is all too familiar, over the counter meds that never help, sleepless nights, desperation, the good news is you're home now! You need an organized approach to managing CH so it don’t manage your life. I use a 3 pronged approach, many use a similar approach.

But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

[i]As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days[/i]

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, looks like that's what your neuro is starting with. We use it at doses much higher then  most docs are comfy with, some go as high as 960 mg a day to get relief. Topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. I assume that's how he has you taking the pred, as a short taper while the verapamil works up in your system?

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


Have you tried energy drinks yet? Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Looks like I've found the spot. Very grateful for this site. At risk of being fng, here's my story. toothache, tmj syndrome, nerve damage? None of these things fit as complete as CH. I'm on my way to becoming a massage therapist, finished school and just have to take test....But how, not like this. It's only been three months. first once a night four times a week. got tooth pulled been doing stretches and massage ... no absolute help, some relief and preventative maintenance, but I'm up to 2-4 "flare-up's" a night. (sometimes days too). I do not  have money for doctors, have been to the er twice.(lot of good they did). Just glad I'm not alone.  my heart goes out to all that suffer, my gratitude for all the poor souls that have been stuck in this hell, thank you for that gental dim light of hope.