Hello from Ohio and a painful one at that. I have been diagnosed with clusters since 2003, when I started college. We believe my triggers to be mold along with possible season changes as I usually get them right around September. My patterns usually last from September to December.

Right now my current cycle is still going in fact I just had a cluster attack. I have been hospitalized for this and thankfully found a good neurologist because of that. I see her tomorrow.

I have tried a long list of medications. Right now I have the Imitrex shots, nasal spray, and also Flonase. I'm terrified of shots so at the moment I've given up on them because I go through a terrible panic attack when I try to give myself a shot during one of my attacks and usually end up screwing up the shot, only causing me more distress. The nasal spray used to work but this last attack I had, it didn't even touch it.

My body has a history of also becoming tolerant to medications, which could be a possibility with the nasal spray.

This pain is ruining my life, and I know it has ruined many others. It's just hard to have a social life because I never know when an attack is coming (I had one at work, was beyond embarrassed that they got to witness that), and even trying to have a social life is hard, and having a relationship is laughable because I have yet to find someone who understands what goes on with a person who has clusters (even my co-workers don't understand what's going on with me and they've seen this and have watched me suffer in pain for years. I even tell them today isn't a good day I've had several attacks so I'll have more, and they just don't understand).

I'm hoping tomorrow, that the doctor can help me find some relief. I'm wore out, I'm exhausted, and I feel like I'm a shadow of a person I used to be. I used to be so sharp, on point etc, and now I'm making silly mistakes because my body is trying to focus on the pain and getting past it.

Sorry if this seems like a poor me story but I'm just sick and tired of being sick and tired.

This is not a poor story, and I'm sorry you had to find us. You are amongst friends now who now what your going through. tell us what medication you have already tried,  and we can go from there.

Cheers, Hoppy.

I'll try to get the list from my doctor tomorrow. The best thing they've found so far with me is to keep me on IV Depakote with Benadryl mixed in with it. It knocks me down hard but it keeps me asleep and I sleep through the pain, but I can't be on it 24/7 obviously.

Oxygen has never really proved too useful with me but I read where the nasal cannulas don't work effectively and that's all anyone has tried on me. I also used to be a medic so excuse me if I go into medical stuff big time lol.

And thank you for the welcome to the board!

You are right about the nasal  cannulas. They won't deliver enough O2. On the left side of your screen is a yellow button oxygen info. It will help you to get the best results from O2. Please keep us informed.

Glad you're here.
There are great people here who have extensive knowledge of treatments.
I was interested in how much of your note you gave over to your situation in work. Clearly this is adding to your concerns a lot and you don't need that.
Firstly, read this link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Hope it opens for you.  If you you have one or two colleagues you consider as friends as much as colleagues then ask them to read it. Only if you feel it's appropriate.
If you can cultivate a couple of supporters they will help you in getting others to understand. At worst you may feel less isolated in the workplace.
Getting understanding at work can relieve a lot of extra stress that you just don't need. I know this from personal experience.
Best of luck,
Peter.

Hi daredevilgirl,
Both oxygen and imitrex injections are fantastic abortives.
But the oxygen won't work with nose canulas. You need a non- rebreather mask and a flow rate of at least 15 litres per minute( more is better). I have only been using it for just over a year and it has made such a difference.

Please try the imitrex shots again. You will find no better abortive to take with you to work. If you feel an attack coming on a quick trip to the ladies room and you will be painfree in a few minutes. It's just a pin prick  (I do it on my thigh), and FAR less painful and stressful than a CH. One second of low level discomfort as apposed to possible hours of agony.

The first time is always hard and nerve racking - I was scared half to death. But now it's almost second nature, and the first thing I reach for when I'm not near my 02 tanks. They are my new best friend and I never leave home without them. Do you have a friend at work who could maybe do the first one for you. Once you know what it's going to feel like the next time might not be so difficult. Please try, you won't be sorry.
Maz.

Are you working with a doc who has training/experience with complex headache disorders? We regard as essential since so many docs, even neuros, have meage training.

Imitrex in the auto-inject form will help resolve your anxiety BUT it would be useful for you to discuss this fear with your doc and/or have him or his nurse help introduce you to the auto-inject approach. Imitrex is the best abortive we have.

Are you using any preventive med? Essential! Only using an abortive is both expensive and denies you some basic care.

Print the PDF file, below, and use to discuss options with your doc.

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