I just don't know where to begin.  I have suffered for 15 years. And like most of you, had to let my doctor know that, no I do not get migraines, I get cluster headaches.  I guess because I am a women they just assume.  Any way, I have been on Verapamil, Prednisone, Lithium, Depakote, I know I'm not spelling these right sorry.  Nothing has worked.  The only thing that has worked if Prednisone 60 or more mg.  As soon as I tapper down that is it.  Twice in my life I have gone 1 year with no headaches.  That was last year.  Since January all hell broke loose.  Now I am on Topamax.  That is not working.  The other night the Imitrex did not even work and I was praying to die.  And I Just wanted to .  I cry as I type this, because I just don't know what to do any more.  I always read everyone suggestions, I try everything that I can but the other night I just wanted to die.  And I just can't tell any one else that.  Sorry

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What Potter said. Oxygen, at a flow rate to support hyper ventilation, will abort in as little as 6 minutes. Has all but eliminated imitrex use for me, and I've been dancing with the beast for 33 years.

Go to the meds section, read the post "123 pain free days and i think I know why." A vitamin/mineral/anti inflammatory regimen, all OTC stuff. Got me thru a high point in my last cycle when even oxygen became ineffective. A long read but worth the effort. It's helping a lot of people on the board.

Then go to our sister site, they use "alternative" methods to treat CH and are turning out some pretty impressive success stories.

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Joe

All great advise, get to a  CH experienced Neurologist, High flow Oxygen has been my saviour, I did not suffer most of the meds. you described very well, nor did they help much. I've tried them all plus some you haven't mentioned. I've been fighting the battle the better part of 20 years. I'm currently doing very well, but that, as we all know could change with the change of season. Never really leaves us alone... I should say, the worst part of 20 years... :o

We are all different, this is an interesting facet of the Beast, he can't be stopped the same way with all of us. Hang in there and read... read... read...

The support of this forum is priceless and is reviewed by prominent Neuros in the field. They learn as much from us as we do from them... Believe me.  :)

Quote:

The only thing that has worked if Prednisone 60 or more mg.  As soon as I tapper down that is it. I have been on Verapamil, Prednisone, Lithium, Depakote

If you can remember, was the verapamil started at the time you began the pred taper, and when the pred taper was done, how much verapamil were you taking daily? 



Quote:

The other night the Imitrex did not even work

Pill, nasal spray, or injection?



Quote:

Since January all hell broke loose.

Long cycle, tough to only have Imitrex to use as an abortive without an effective preventative. I'd agree that the oxygen is a good abortive for CH, Imitrex use over a long time had seemed to make my attacks ramp up faster and harder-hitting.


Welcome.

I was on 325 mg of Verapamil.   And I only take Imitrex injections.  I can not find a doctor to give me Oxygen.  I have been trying to find one in NJ for years.  I have been on this site for years.  I have read everything that everyone has posted about oxygen,  I have even printed them out and took the posts to the doctors with me and they will not give it to me.  But her is the kicker,  I buy the Medi Focus book and look up different meds and ask to be put on them and my doc puts me on whatever I want.  So now I am looking for some one new up in North Jersey but they are on vacation this week.  Thank you everyone for letting me vent.

Jodi wrote on Sep 3^rd, 2011 at 10:37pm:

I was on 325 mg of Verapamil.

That's a very low end for cluster prevention, especially after the pred taper wears off, however, about right for a gradual increase after a ten day pred taper.  Immediately after the pred ends can be a very hard time, but if the verapamil was tolerated ok and thereafter gradually increased to 480, some preventive effectiveness may have started.

For hard times, I've had to go to 600, 720, and 900 for short durations.  360mg/daily or so has not worked for me also many times.

My Doctor will not let me go on any higher dose of verap because my blood pressure is unusually very low.  My top number is about 89 and my lower number is in the 60's.  And my pulse is in the 70's.   I have been on prendisone for 8 months that is fun.

Quote:

I have been on prendisone for 8 months that is fun.

Obviously you're being sarcastic, but being on prednisone for 8 months can be not only "fun," it can be downright life-threatening.

If you can't get a doctor to prescribe O2, you need to take your treatment into your own hands and get the O2 yourself. Contact a welding supply house. Don't tell them what you'll be using it for.

Wow.  Brew's downright is right.

Prednisone for 8 months is scary, really, really scary. That stuff is hard on your body on several levels. :-/

Lithium has been a succesful prevent for many when verapamil didn't work or just couldn't be tolerated at higher levels. I use 1200 mg a day while on cycle, blocks 60-70% of my attacks. If i didn't tell you I was tkaing it you'd never know. At those levels it has no noticeable effects. Might be worth talking to your doc.

joe

Guiseppi wrote on Sep 5^th, 2011 at 10:23am:

Prednisone for 8 months is scary, really, really scary. That stuff is hard on your body on several levels. :-/

Totally agreeing with what Joe has written. Prednisione is good for short term use but long term it can cause multiple issues.

Do talk to your doctor about this.

Oh my, you are running the gamut of usual suspects for CH interventions. As previously mentioned your verapamil dose is low for effectiveness (I understand your dr won't let you go higher) so perhaps the dose levels on the other meds were too low as well? That aside, I also had tried every med you list and then some. Topamax for a year and all it got rid of was my ability to retrieve the right word when I wanted. Please do get high flow O2 even if you must do so on your own. The proper equipment, technique and flow rates are critical to its ability to abort quickly. There are other interventions available (like olanzapine and clusterbusters) that's the good news. The bad news is you are still in the trial and error please. Persist. It is your health, physical and mental, so you must take heart and take control. Blessings. lance

Yes, I was being sarcastic,  I went to see a top zeuro in Philly and all he did was up the prendisone mg.  I am on Topamax Right now.  Total of 100 mg a day not working but it's only been a month.  I'm weening off the prendisone.  20mg this week.  Hate the topamax can't even remember my name.  I have tried lithium but that was 12 years ago.  So I will give it a shot.  I did find a new doctor, he is on vacation, when he gets back i will see him about o2.  I have begged so many doctors for it and I so has my husband, i thought he might even hit one of the docs for it. I don't understand.  Something so simple.  Thank you for all your help.

Oxygen is the easiest of all the abortives.  Go buy your own setup.

       Potter

Can you just go buy your own oxygen and set up?  Is it that easy to just go buy oxygen?  I thought that you needed a prescription?

check the oxygen info tab on left in yellow - I've gone the welders o2 route and as long as you don't tell them what you want it for it's not too hard to get. I did have to go to 3 different places before finding the 4th that would rent me the tank.

Jodi, medical grade 02 requires a prescription. Welding 02 is just as pure, it has to be, if there are any impurities in welding oxygen, the welds don't hold. Many on the board have been using welding oxygen for years. Read that oxygen link, it will show you what you need for a set up. Then ask questions. The biggest advantage to getting 02 prescribed is many insurance companies are covering it now.

Joe

Joe,  Thank you so much. I can get welding o2 through work.  I work at a clock shop.  I can get it right down the road from me.  I thought there was a difference.  Thank you so very much.