Stuck in Limbo

Friday, February 02, 2007

I apologize in advance that this post is a 'poor, pity me' post. Part of it is from the lack of proper deep sleep. Maybe with some luck pain clinic change things for the best. If things don't get better there I don't know what I'll do.

I hate to feel this way. Some days it would be nice to talk with someone is person that would hold me while I to them about this. Maybe even cry along. Ever since the 5 year anniversary of the start of the what is seemingly an never-ending cluster cycle, my mind has been full of "what if", "what next" and "why me" scenarios. In a little over 6 weeks I will hit the ripe age of 30, just having passed the supposedly peak of physical health. A huge chunk of life was and still is being taken away from me. I mean is it not 5 years of 'on and off' pain where I can at least stand on my own 2 feet from time. Maybe to be a good boyfriend, friend, employee or son. None of which I feel I am and have not really been assured otherwise.

Realistically I have become none of these. Going from someone who was general happy with 90% of life. Right on the verge of making a name for myself and being proud of who I am. All the while enjoying the scenerary the road of life was showing me. It's clichè I know but I was confident on the direction headed before me. Now 5 years are just GONE! With very little personally to show for it. I don't know what to do anymore. What direction I should I head. The realization of the likelihood of working a steady or being with someone who be general proud of a 'stay-at-home' boyfriend is not likely. If I were to work again my boss would have to be the most patient, considerate and understanding person who has ever lived.

The only thing I can think of doing is to try to find happiness in the smallest pieces. I know what your saying, "Duh! What took him so long.". To answer the question I really don't know. A lot of time and energy has been spent hoping & trying, trying & hoping to help the people I care about truly understand what I go through so they have clear inclination on where my mind and body are right now and will likely be the remainder of this life. The ones I truly care about have to, in my mind, be crystal clear on what it will take apart of each others' lives. I am likely wanting to much from my loved ones and the only way to stop the guilt I have about holding them back or making their lives' miserable is to be by myself until the demon calms down enough for me to be more than a recipient of seemingly unstoppable levels of pain.


Where would you rather be?
Anywhere but here
When will the time be right?
Anytime but now
The doubt and the fear I know
would all disappear
Anywhere but here

- Unknown

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I'm so sorry, Paul. You're in my thoughts.

By Anonymous Kerrie, at 3 February 2007 at 22:41  

Dear Brother Paul,

I understand. Your story and mine are very similar. I've been dealing with the cluster / migraine syndrome since 1998. I can honestly relate and empathize with all of your comments and feelings. I retired from the military after 22 years and started a second career in the mean time. I am managing somehow. My boss is a saint and he understands -- he's seen me in an attack --- toughing it out and staying at work. I am very fortunate that he's more like a dad / older brother than a boss.

It doesn't hurt that he's also ex-military -- comrade in arms type.

I know my wife is tired of me being such a wall flower. I'm afraid to go out and have a debilitating attack in public. Sweet lord, what can you do? I could rip a telphone book the size of Toronto's in half during an attack and that's no way to be when you're out in a restaurant or cinema, etc.

I read through some of your older blogs and noticed you did the Enderol thing -- me too. Wow, same experience I had. The best thing I have going for me now is Maxalt (rizatriptan) but I eat those like candy. They work, but for piss sakes, treating the symptoms is not what I'm after. I too am seeking a preventative (prophylaxis) but so far no luck.

I'm getting to the point where the words Neurologist and Charlatan are synonyms. Heck, the other day I clenched my jaws so tight I cracked one of my molars. Darn piece of tooth broke off. Forunately it wasn't an incisor or front tooth. Could you imagine that? I'd be up pacing with a cluster and someone would see me in the middle of the night with this jagged tooth and think I was a vampire!

I understand how the clusters do affect everything in my life: my wife and kids especially. My kids are grown but still at home (18 and 17) and they understand because thet've seen me go through numerous attacks. They also find me quite entertaining when the Maxalt (rizatriptans) kick in. Even my pets know when I'm in the sh_t. I guess our scent changes with the hot/cold flash and sweating, etc. They instinctively know not to bark or rough play. They do provide some form of therapy when they pace with me silently. Cesar Milan the "Dog Whisperer" would be proud eh? The cats are aloof as always, but hey they're cats, can't expect too much.

I'm basically off of NSAIDs since I started to have the heartburn and reflux cosntantly, etc. By the way, Nexium does work !

So here goes my body chemistry all to hell and making everything all the more wierder to deal with (again). You know the drill I'm sure. Well, Paul, brother in arms / pain. You are not alone and I'll put you in my prayers. Maybe heaven has a special place for clusterheads? A nice thought to have (not being morbid here just some dark humor). It's almost like the suffering of the saints eh? Where's the payoff?

By the way, my name is Elliot. I'm 43. I live in Oklahoma USA (where I retired form the US Armed Forces). If you need to talk to somebody, I'll listen. Like I said, I understand. I've put your blog on my favorites list so I'll be back. I too can use a listener.

This may sound trite, but there is always someone else out there worse off than you and I, and we have to be thankful for whatever we get and already have: (i.e., when we are not in pain and can still see the beauty of nature, a child's smile, dog licking your hand,the smallest amount of warmth from another human). Trust me, I'm no poet or "metro-sensitve weenie" but I ernestly mean what I just said.

Take it as easy as you can; try not to let the anxiety of the "next one" get to you -- if it's going to happern it will so just deal with it one at a time. No sense in making things worse on ourselves right? I watched the video clip of a fellow going through a cluster attack with the oxygen mask on and his friend holding him on the web tonight. I thought I was going to cry. Jesus, did I know that feeling.

Anyway, I'm rambling and I apologize. This is my first time to open up to another clusterhead.

That's it for now. I'm going to try and get some sleep and see my Dr. in the morning -- I'm down to my last 3 triptan pills and that's maybe a 1.5 days worth.


By Anonymous Elliot, at 4 February 2007 at 18:52  

Hang in there.

Thank you for sharing your thoughts. I think it helps knowing that there are people who can understand what we are going through. I sincerely hope that things at the pain clinic work out. I know what it is like having to try over and over again - and dreading one potential outcome while hoping for another. I will be praying for you. If you ever need someone to talk to, stop by my blog. I included the address. Provided I am not in the hospital...I will be there daily.

By Anonymous Katie, at 6 February 2007 at 22:34  

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Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*

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