Good morning,

I'm new to this forum and actually new to any message board. I'm not very tech savvy. I have been getting clusters since 1997. They have been coming back every year and last for 6 to 8 weeks. Suicide has been considered many times over the years as I'm sure this sad thought has gone through most of you. I have studied myself before during and after my cluster session. I learned not to lay down, I learned that oxygen takes the edge off. I learned that having an orgasm helps but nothing takes the pain completely away.

Let's start with what I believe could be my cure but no doctor will take me seriously. I am a carpenter. I work in a shop where there is a lot of dust and I would sneeze 4 to 5 times every morning and I mean every morning. When my headaches would start I noticed over the years that my sneezing would stop until the headaches stopped. It was a relief to sneeze again. It wouldn't work if I smelled pepper and sneezed, it had to come naturally. I believe that histamine is at least my cure, but they don't make histamine only antihistamine. ive been retired for 5 years because of a back injury and don't sneeze in the mornings anymore, but my nose runs in the morning. Now that my cluster are back, my nose does not run in the morning.
When I get my headache my left side sinuses seem to dry up and seem plugged. So you try to blow you nose but nothing comes out.
So my question to everyone is, have you had the same experience with your nose and sinuses and sneezing?

I have long believed that clusters and sneezles are related. I have absolutely no evidence to back this up but won't be talked out of it.

Welcome to Clusterville, and tell us more about how you use oxygen because perhaps we can help you towards getting a bit more relief from it.

Only better days ahead,

Brian down under.

The Diamond Headache Clinic, in Mich. I think, specialized in histamine desensitization for treatment of clusters.  Clusters have been called histamine headaches for a long time.

I can't thank you guys enough for this website. I've been suffering for 20 years basically by myself. My life has been blessed with these headaches and multiple injuries. I've not seen a doctor for my headaches for about 15 years since they told me nothing could be done except pain killers. Well since I've had injuries I've always had meds. I've had oxygen once in the hospital before I even checked in. My headaches went away and I left before I was admitted. The nurse didn't know what to think. From the way she saw me come in and 15 minutes later I was ready to go home "normal"  Ii usually don't even make doctor appointments because by the time they can see me the clusters are gone.

I read a lot yesterday and should have before my post, like the directions say, so you don't make an ass of yourself. I cried a lot knowing that I'm not alone. Batch has already reached out to me with the D3 regiment and I'm going to see my neurologist next week. My headaches have been lasting a bit longer than normal, 3 weeks and still going. They haven't been bad but all day long. 5 or 6 lasting from 30 minutes to a couple of hours. I just hope I'm not becoming chronic.  Thanks again everyone

Very few clusterheads go from episodic to chronic so don't worry about that.  I was a very regular episodic for 20 years.  Then the timing of the attacks started to change, longer remission, longer episodes, more frequent attacks.  After about 15 years of that they quit and I haven't had a cluster in 10 years.  You're not becoming chronic, you're starting the transition to quitting! ;)

Thanks Bob. You saying that put some hope in me. Been pretty depressed lately. You know how these things can get you down. Being retired now not having to go to work makes you stay home so your not out in public when you get one. Not many people in my life know I get these so it's nice to be able to read all your stories and be able to relate to them. My this be my last cluster for at least a few years. One can only hope. Seeing my doc in a couple of hours I'll let you know what she says. Have a great day everyone. May your pain be at a 1

Well, I'm one of the few that went from episodic to chronic and stayed that way for years and years and years...

O2 (high liters - then demand valve) was a lifesaver. After getting on the D3 regimen, I've been PF for almost 3 years. After almost 20 years of chronic - I'm still doing the happy dance.

Listen to Batch - you don't have a thing to lose and it's helped so many of us.

And some, like Bob P, just go into remission and stay there. There is NO cure, but remission is great.

Stay on this board and keep us up to date on how you're doing. One thing you'll find out here is that we've all been where you are and we DO understand..   :-* :-*

Just came from the doc. She ordered mri just in case because of family history. Ordered blood tests and already stopped at the store and got all the vitamins to start the d3 regiment after blood tests come back. Fingers crossed :D :D :D :D

Good morning everyone

Blood drawn this morning. Taken my first day of Batch's pills. I was wondering since you can get vitamin D3 from the sun, is there anyone who works outside getting clusters. I worked outside till about 35 years old then started working in a shop and got my headaches 2 years later. Just a thought.

I hope everyone has a great day

Ilndguy :)

Good morning

This morning my nose started running and I sneezed 12 times in about 90 seconds. This is my sign that has happened over the last 20 years that my cycle is ended. I'll let you know if I get any shadows today. I started the D3 regiment 5 days ago, I don't know if that brought on my sneezing attack but I'm not going to stop taking them.

Pain free days are coming

Ilndguy ; :D :D :D

HOPE fer the best. Take what you need here ...and ignore the rest. My respite was shrooms.