Hi All; New to the board. unfortunately not new to the beast. May actually be a veteran by most standards. Born in 58 first Clusters by age 13. Have always been cyclical. one or 2 attacks per day max. Cluster periods would last 6-7 months at a crack early on but over the years have diminished to 4-8 weeks. Pain has not gotten any better.  Live in Ontario Canada. Board name is a nick name given to me by my buddies for my love of early 70's motorcycles that don't handle well. Have a long history of medications that worked but over time my body gets immune to them and I am one of the few that O2 truly does not work on. I have read some posts of those suffering chronic CH and cant tell you how much I admire their strength and attitude. I whine and carry on like a big baby with mine. I can only imagine the internal strength and integrity it would take to battle it many times daily. All the best to my fellow CH sufferers and thank you for the support system that is available on this board.

Rob

How was the O2 administered?

     Potter

I think it was about 15 lpm. Used a standard mask. Not the ones I have seen on here.

Rob

Speed Wobble wrote on Dec 30^th, 2013 at 2:29pm:

I think it was about 15 lpm. Used a standard mask. Not the ones I have seen on here.

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Have a read up about how we use O2 for killing CHs. Using the wrong type of mask can make a massive difference. Similarly using a higher flow rate also has an impact, using 15lpm I abort a CH in about 12 minutesd but at 25lpm I can do it in about 5 minutes. For some people who can't abort at 15lpm they can at 25lpm.

Are you being treated by a doc who has training/exerience with headache disorders? If not, do you have accesss to one?

You mention of meds not working or stop working is an important clue which needs a good doc's attention

Tell us: what med have you used?, dose and duration before dropping-- the  whole list.

Rob wrote,
Board name is a nick name given to me by my buddies for my love of early 70's motorcycles that don't handle well.

Hi Rob,
This bought back a few fond memories. I remember when
my dad bought me a bsa bantam on my 16th birthday,wow.
I traded it in later, for a Triumph Tiger Cub. Then i hit the
big time, with a Triumph Bonneville. Thanks for the memory.

Wishing you pain free days,
Hoppy.

Welcome to the board Nick. I gave up my last motorcycle about 4 years ago. Hit my 50's and all my friends were in various states of rehab from bike crashes and figured I'd tempted the Gods long enough!!!!

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


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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!

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


Glad you found us hoping we can help you out a bit.

Joe

Bob Johnson wrote on Dec 30^th, 2013 at 4:07pm:

Are you being treated by a doc who has training/exerience with headache disorders? If not, do you have accesss to one? You mention of meds not working or stop working is an important clue which needs a good doc's attention Tell us: what med have you used?, dose and duration before dropping-- the  whole list.

Hi Bob: I have seen 3 different specialists over the 40 plus years and cant honestly remember what doses they were but some of the successes that my body became immune to were Sansert, prednisone, Migranol nose spray and Lithium. The failures were O2, Verapamil or other channel blockers and Imitrex. Oddly enough with the first Imitrex injection I had the longest duration Cluster of my life. Almost 5 hours. Had success recently with water treatment. Cure or coincidental end of cluster period is unknown. Since my cluster periods are diminishing in the duration. usually 4-8 weeks now and frequency is just about every 3 years around X-mas my treatments have simplified to energy drinks and scalding hot showers pointed directly to my head. Usually kills it in 10 minutes. I will for sure try the D3 treatment immediately though. Nothing to lose there.

Rob

Thanx for the greeting Hoppy and Joe. D3 it is!!! On my way to the Pharmacy shortly. Bike is a 1974 Kawasaki 2 stroke 500 Triple. Yes the H1 widowmaker. Great museum piece but not much of a daily rider. Tried to post a pic but wont let me till I post 10 times. Just picked up a mint 1983 Suzuki GS1100ES. That will be the daily rider.

Talk soon

Rob

My 2nd to last bike was the GS650, sweet, fast ride!

Joe

Guiseppi wrote on Dec 31^st, 2013 at 9:22am:

My 2nd to last bike was the GS650, sweet, fast ride! Joe

And the engines last forever. If Hoppy were still sitting on the Bonnie in good shape it would be worth a few sheckles today.

Rob

Hi Rob,
My Brother still has my Bonnie, tucked away, he's still got his old Norton Dominator. When i was in the UK last year,
we went for a ride, down memory lane.


Hoppy.

Rob: when a long list of meds which are standards for Cluster fail to give you relief, it's a strong suggestion that you don't have Cluster. This is a compelling reason for finding a headache specialist to make a solid diagnosis.

See:
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Only using any kind of treatment which masks the pain can easily become a barrier to a solid diagnosis.

Thanx for the input Bob. However this diagnosis has been made by a GP and concurred by 3 different neurologists. Each one with their own special treatments. Also as stated in my previous posts  most of the medication did give great results. However I have an unfortunate ability of building up immunities to medications. That goes for any long term med even those not pertaining to CH's. My symptoms are classic episodic clusters.

Thanx

Rob

Hi Rob,
Did you check out what Joe wrote #7. After suffering
from CH's for 43yrs, i am now CH free.

Hoppy.

No  I cant see what your looking at but I have read and heard from neurologists that there is an end in site with duration. I am 41 years now and things have drastically improved but just doesn't seem to want to go away, The end is in site :) :) :) :) :)


Rob

Hi, I don't like to push in on some one elses answer, but I think it's reply #6 you need to look at, and click on the link.

Hi Rob,
Sorry, but i think i've  [smiley=confused.gif] you. I was referring to the vitamin D3 regime #6. But,after reading your reply #8, your already up to speed with that.

Hoppy.

Let me just nudge you to print the Cluster-LIKE article and share with you doc.

Major study out of Italy discovered that 50% of new Cluster cases had been misdiagnosed--not Cluster. This was severall years ago before the concept of Cluster-LIKE disorders mimicing true Cluster had gained attention and medical exploration. Point, good doctors may not become aware of just fullsome this literature has become, identifying this alternative explanaation of one's headaches.