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Hoping to help find some relief and support here. (Read 1362 times)
VolDeVie
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Hoping to help find some relief and support here.
Apr 27th, 2013 at 5:25am
 
A quick about me for you all. I'm 21 years old, and pride myself in teaching myself anything and everything I can. I've taught myself a tremendous amount of music theory so far this year, along with how to play the piano and ukulele. I want nothing more than to be able to make beautiful music that others can lose themselves in, and find comfort in as I have in others music. My passion is nothing more than music and knowledge.

My Ordeal (Sorry if it's a bit lengthy, but I need to get this out):
I haven't had a cluster headache for the past 3 years. I had moved to a higher altitude and thought that the CHs may have disappeared with the cleaner air. Obviously, finding myself here introducing myself, I was wrong. I was first diagnosed at the age of 17. My father saw the immense pain I was in and immediately recognized it as a Cluster Headache, which he also suffers from. He immediately took me to the doctor and I was put on quite a variety of drugs to get the pain down. During my High School years I experienced several attacks while at school, one such time the Nurse sent me back to class and wouldn't allow me to go home or take medication. Unluckily, on this day I knew what these felt like without medication, as many of you do. I was heavily involved in our Theatre program and ended up missing our Tech Week due to these. Shortly after I was ostracized because I should have "worked through it". I had clusters all through my Junior + Senior year at school, and more often than not would not be able to take any medication until after school hours. They subsided shortly after I graduated.
In recent years I've been working as a Server at a rather poorly ran restaurant. Along with Cluster Headaches I also suffer from having a slightly misshapen spine and have some problems with my knees. I feel as my body is already falling apart while still in my youth. I've always been dragging a bit behind my co-workers with knots in my back the size of golf balls (not an over-exaggeration). I've always felt like the Managers looked down on me, when I gave it all I had and did my best to mask the limp I have. Today, after finally getting over a rather vicious cold that had stolen my voice, I get back to work, ready to work! Not more than 15 minutes in to my shift the world around me falls apart and blurs together. I could hardly see straight, felt faint, and everything was far too bright to be able to work properly. I immediately alerted my managers that I needed a moment to sit down, thinking it was just a remnant of the cold I had gotten over. After 20 minutes of this I realized that my condition wasn't improving and asked to leave. They frowned, and allowed me to go home. The moment I got home I realized exactly what was happening and my heart sunk. I called my Doctor got an appointment that was almost immediate, and made it there before the pain started peaking. They put me on oxygen for about 30 minutes, gave me a shot of something in my tuckus, and allowed me to be alone in the room until the pain subsided. This was the most frightening experience I've had in several years, and it helps even writing this out, knowing that you can relate.
Anyways, I get home with medication, some muscle relaxers and some preventative medications and decide to call my work and let them know how I was and what had happened. I was greeted with sarcasm from my manager, not knowing how terrible I felt having to leave work, let alone deal with a Cluster Headache. I've been dealing with these Headaches all day, been enraged at my work, and feel let down in myself for having to leave work even though it was necessary. I also fear for the upcoming weeks or months. I no longer remember what my cycles were like, or if they'll evolve in to something much worse this time. I hope to find some relief and support from all you other unlucky ones out there. Best wishes - Vol

Edit: Upon reading around the forums some, I see a lot of effort focused on proper diagnoses through specialists. I've been through several specialists and plan on seeing more about these. I've researched the subject a tremendous amount and am extremely certain at this point that I do suffer from CH and not a Cluster-LIKE disorder. Though I am still pursuing the possibility in hopes of finding relief from these.

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« Last Edit: Apr 27th, 2013 at 5:46am by VolDeVie »  
 
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wimsey1
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Re: Hoping to help find some relief and support here.
Reply #1 - Apr 27th, 2013 at 8:33am
 
Quote:
Not more than 15 minutes in to my shift the world around me falls apart and blurs together. I could hardly see straight, felt faint, and everything was far too bright to be able to work properly.


Welcome, Vol. I understand you are confident in the diagnosis you have received, and while I am not calling that into question, I will say the above is not part of any CH description I've seen. You obviously know the difference between cluster and cluster-like headaches but do the doctors you've seen know the difference? I don't mean to be facetious. Many who are not specialists, and even some who are, are woefully unprepared for us.

It would also help if you could be more specific about what you've tried for abortives and preventatives. And the dose levels. Doctors tend to be very conservative here and we often need much more aggressive handling.

Looking forward to hearing back. God bless. lance
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Bob Johnson
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Re: Hoping to help find some relief and support here.
Reply #2 - Apr 27th, 2013 at 12:01pm
 
Agree with lance plus,

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU

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Bob Johnson
 
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VolDeVie
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Re: Hoping to help find some relief and support here.
Reply #3 - Apr 27th, 2013 at 4:33pm
 
The light thing was actually something I had never experienced before. I thought it was odd myself when that happened yesterday. Hoping it doesn't happen again on the next hit, adding that in to the whole process made things a hell of a lot worse than they already were. : /
Anyways, I've been through about 2 or 3 doctors, and several specialists.  The specialists where about the time I was diagnosed by my Primary at the time, so this was about 3-4 years ago. I remember we went through a few specialists, I'm extremely picky on doctors. I believe they did an MRI among other things. The last one I had saw me during an attack, and seemed rather positive at that point that is was CH for sure. Part of the reason I'm so sure it's not Cluster-Like is my Father suffered from CHs. I realize some of the Cluster-Like could also be hereditary. Also, I currently live in Flagstaff AZ.

For medication, oxygen is EXTREMELY helpful. I found after about 10 minutes I could sort of open my eye again, after about 20 I could open it all the way. The oxygen seems to kill these almost immediately. The other abortive I've used is Relpax, I've found this almost always takes them out as well. This time around my insurance didn't want to cover it though, I was given Sumatriptan instead. Will be testing it today to see if it helps as much.

As far as preventative, I was just prescribed Cyproheptadine for that. I've been on no preventative medication until now.

If there was anything else in particular that you wanted to know for medical stuffs to help you help me let me know. I think I mentioned earlier up my spine is a bit misshapen, it hardly has the S curve, had a few xrays done of that.

Edit: I was also given a shot of Toradol, that was the tuckus shot. I was already on O2 for about 15 minutes by the time that injection was given, so not sure how much that helped.
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« Last Edit: Apr 27th, 2013 at 4:50pm by VolDeVie »  
 
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Bob Johnson
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Re: Hoping to help find some relief and support here.
Reply #4 - Apr 28th, 2013 at 9:06am
 
I'm curious about you being given cyproheptadine. Had to dig in the medical literature and the latest mention of it for Cluster was 1975 ! Raises the question of why your doc would use this class of meds which are not part of the most current treatments.
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Bob Johnson
 
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wimsey1
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Re: Hoping to help find some relief and support here.
Reply #5 - Apr 29th, 2013 at 7:02am
 
What Bob said, which only underscores my point above. As for O2, how are you receiving it? And at what flow rate? Most of us have found some relief at low rates, but the most effective use is at 15-25lpm or higher. Using a nonrebreather mask to achieve hyperventilation also shortens the abort time. Sumatriptan can be very effective in aborting a hit but is best used as an injection rather than a pill. Using this type of regimen, we're looking at a full on abort in under 5 minutes instead of the 15-30 minutes it used to take. God bless. lance
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