Wow.  I can't believe I found this place.  Heheh.  This is just...I don't know what to say.  I've been going through this for years.  Never knew there was a support group.  Only met 3 people with clusters at MHNI.  That's it. 

The clusters started back in 7th grade three month cycle.  Went chronic in 97.  Everyone here knows the stories.  Knows the pain.  I don't need to reiterate it.  I got mine from a head injury.  The normal treatments didn't work.  Finally found neurontin. 

They just yanked me off neurontin.  Sigh.  I'm back in cycle.  I had a few years free of the beast.  Other stuff went wrong medically that causes tremendous amounts of pain in other parts of my body.  The clusters added to the other ailments.  I can honestly say, I don't know how to deal. 

Like, I've never had vertigo with the headaches before.  The headaches...you can't walk really well.  I would list a lot, but never spin.  I never had nystagmus with it. 

I don't want anyone to go through this.  Clusters are the most isolating, most destructive...I can't even describe it.  But, you all know it.  And now, I'm reaching a whole new level of messed uppedness.  Not a word, I know.

I don't know you guys.  I don't know how we do it.  I don't know.  I don't know how we keep going.  But, we do.

Much love to all the people on here.

Hello and welcome. You've come to the right place if you are dealing with CHs. You mention the MNHI. What is that? Also, the neurontin. It's an old line treatment for migraines and CHs. I got up to 860mg/day before ditching it as an ineffective measure. It sure did make the world soft and fuzzy around the ages, though. How are you being treated, and what has and has not worked for you? Let us know. God bless. lance

Hey Lance,

It's nice to meet you. 

MHNI is the Michigan Head and Neurological Institute in Grand Rapids. 

What have I tried?  All these failed.  I don't know why.  O2.  Verapamil, Depakote, Lithium, Ergots, caffeine for whatever reason works better for me than ergots (don't get that one, won't say that I do.  I realize vaso constriction, but you think the pill and injections would work) botox injections, trigeminal nerve block, prednisone, muscle relaxers, I honestly don't remember the name of the anti nausea med.  That was 14 years ago? yadda, yadda...the cocktails they put me on were just wrong.  It's like the ch's adapted every time. 

Then at MHNI they put me on neurontin and a lot of other stuff.  I was able to cut out the other stuff and realized that it was the neurontin that was holding the headaches at bay.  It worked.  But, now I've got other health issues.  I got yanked off the neurontin.  And I waltzed right back into a cycle.  I was getting the shadows.  I knew what was coming.  Couldn't stop it.  Getting ten a day, now.  45 min-3 hours.  I was able to cut back on the neurontin to 600 mg. per day.  Which is a really low dosage. 

I'm no longer being treated.  With the other health issues I'm being sent to Duke.  Duke will end up treating the headaches because that pain will be the most acute pain and not the new issues.  My body isn't tolerating any meds anymore.  Almost at all.  Which is odd, but what can one do. 

What's nice Lance.  This forum exists now.  I had only met three other people with these before.  We all have gone through the isolation, the fear, of course the pain, but now we aren't as isolated.  The positivity I see on this site is really encouraging.  This site is a really good thing. 

Last night, when I found this, it was like I found home.  People that knew exactly what I have been going through.  How serious and detrimental the headaches can be to a person's well being-physically and mentally.  And they don't question it.  They just believe you.  That the pain is real.  And that it exists.  It's why I didn't feel I needed to explain it earlier.  I didn't have to.   So.  That's it in a nut shell. 

I would like to say that it's nice to be here.  Wish I wasn't.  But I am glad that this forum exists.

Yeah, and it did make the world soft and fuzzy around the edges, didn't it?

And it was Ann Arbor not Grand Rapids. 

It was a good group.  You got a team of doctors to banter around ideas on how to relieve the pain.  I don't know if it's still like that or not. So...

For the oxygen, were you using a non-rebreather mask? Were you using a high flow rater of at least 15lpm and if possible higher, say 25lpm+?

This combination has helped a lot of people who have previously tried oxygen and found that it didn't work.

Read up more on the oxygen link on the left.

Hey Mike,

It was a non-rebreather.  It was fifteen years ago.  I honestly don't remember the flow rate.  With the number of headaches I had today...yeah, I'll try it again.  I would be willing to try almost anything again and it's only the first week.  Almost.  Didn't know I was supposed to keep trying it.  It had worked the first three or four days like a charm, then just stopped. 

JMAG, one of the things we've discovered is the tolerance we have for meds. Maybe it's the wrong word, but most of us need doses that sometimes far exceed the label suggestion. For example, verapamil (which you have tried, I know) is often prescribed at 240mg/day. We find our magic bullet around 460mg/day up to over 1000mg/day. I found some relief at 460 and am now at 640. This holds true with just about all of the meds and OTC's we take. O2, at 15lpm with a nonrebreather mask, provides some relief. At 25lpm+ and a good nonrebreather, it's a Godsend-aborts in under 3-5 minutes. Same with melatonin-I found 9-12mg at night helpful, some as high as 20. Far in excess of label use.

I've had these things for over 35 years and have been chronic for the past 8 years or so. Same as you. I've recently added lithium to my cocktail. Can't tell yet what effect since I'm still on a pred taper.

I guess I'm saying it might be time to revisit some of the same meds, but this time with the knowledge that a higher dose may be needed. Also, you should look into clusterbusters. Great people there. Fellow sufferers. And there onto something pretty amazing. Don't give up hope. The beast can be managed if not tamed. God bless. lance

When I saw my neurologist just over a month ago she explained how she is often sent people who say they have tried "all the drugs" for a condition, but when she finds out the doses used, it's virtually always been far too low. So her instructions are normally to take a dose up to the point where it is either effective or the limit for side effects. That way you know if the drug works for you.

Of course this is always done in conjunction with a doctor.

Hey guys,

Thanks for responding.  Seriously glad you are here.  Never tried all the drugs.  A lot of it is still the same.  I pulled all the medical files for Duke and started going over dosage amounts, etc.  I'll check out cluster busters.  I'll go pick up some melatonin.  I'm probably going to be back into the neurologist well before I get to Duke.  I have to cut back on the caffeine intake.  Too many headaches, too much caffeine.  Never thought I'd say that.  Not in a million years would I have thought to say that.