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Hello, I am a new member! (Read 108 times)
Jesse Quintana
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Hello, I am a new member!
Jan 15th, 2020 at 5:29pm
 
Hello everyone. My name is Jesse. I am 42 years old and I live in Lewiston, Idaho. I have suffered from cluster headaches for almost 10 years. I go through a cluster cycle around 2 times a year and sometimes only once a year when I am lucky. They always come in the morning and wake me up from sleep. They usually last around 2 hours or so for me, give and take.  I am new to this as far as knowing that I have a condition with an actual name to it. I never even heard the term cluster headache until very recently. I guess I live in a cave. lol. I am the type of person who hates going to the doctor so I have spent most of my time suffering in my house without seeing a professional for help. I always thought I just had really severe migraines and never could understand how no one else understood the pain I was going through when I was having an attack!! It was like no one could relate to the immense pain. I was just recently diagnosed after suffering a head shattering 2 days of cluster headaches and finally went to the ER because I thought I was seriously having an aneurysm and dying. I have a cabinet full of headache medicine that have been given to me over the years to help that of course did absolutely nothing when I had a cluster headache. I live in a small area with very limited medical facilities for something like this. They are currently trying to find me a neurologist that is familiar with cluster headaches and treating them that isn't across the country. The wait times are ridiculous to get in to any one around here so I am just hoping that the big one doesn't hit anytime soon. I just finally found out what cluster headaches are, although very familiar with suffering from it. I was researching online and came across videos of people that were going through a cluster headache and started crying. I know that pain well and for the first time in my life I don't feel like I am alone. I always felt alone in this world especially with my headaches and now I know that it is a medical condition that others go through as well. Its like finally finding your long lost mother or something. I have been very emotional these last couple days knowing that I have others now for support through this. Finally!!!! After a decade of going through this and feeling like I was some kind of freak that had something wrong with me. I have so many questions to ask now. I stumbled across this site and am hoping to have some questions answered and meet everyone! I thank you all for coming together for each other. There is still caring people in this world and we are all here together. I love you all and I am pleased to be able to meet you and share my story with you. Thank you for taking the time to read this. I know it is kind of long. I just am so excited right now to finally have a connection with others who go through what I do.
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AussieBrian
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Cairns, Qld, Australia
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Re: Hello, I am a new member!
Reply #1 - Jan 15th, 2020 at 11:58pm
 
You are no longer alone, Jesse. You're now among friends who truly understand, from the inside, what a monster this can be. Happily, now you've got a name for this beast, you're taking your first giant stride in taming it.

First and foremost is getting that neuro appointment and hoping like hell he's a bit of a headache specialist. From there it's a matter of looking at the various preventive type medicines that help stop cycles starting, then abortive treatments for individual headaches as they strike.

This is also a good time to start a headache journal listing the time of each hit, the length and intensity, what you were doing at the time, what you'd been eating, because this will help the neuro a lot and may well throw up some patterns you hadn't noticed. Everyone has different triggers from alcohol to chocolate to cheese and finding any one of those triggers is a big deal. A real big deal.

In the meantime you might try chugging down a Red Bull-type energy drink at the first hint of a new hit. Sounds silly, and tastes even worse, but there's something about the caffeine/taurine mix means it works well for many people.

You could also talk with your local doctor/hospital about the chances of accessing their pure oxygen which is the number 1 go-to for so many. If you can get onto it at the absolute beginning of a bad one, at 15-25 litres per minute through a non-rebreather mask, it can make a huge difference but don't be surprised if they're hesitant about allowing it. Many within the medical profession haven't caught up with knowledge
that was available decades ago.

The important thing is to know that help is available. It can be damnably difficult to get at times, we're all testimony to that, but you've just leapt a huge hurdle and it's all go from here.

Welcome aboard,

Brian down under.





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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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MDR
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Elysburg Pa.
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Re: Hello, I am a new member!
Reply #2 - Jan 16th, 2020 at 7:10am
 
Jesse,
welcome glad you found us.
READ everything you can and if you are a drinker of alcohol
it affects a lot of people in a bad way with these headaches just a heads up.

Mark.
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Jesse Quintana
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Lewiston, Idaho
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Re: Hello, I am a new member!
Reply #3 - Jan 16th, 2020 at 10:20am
 
Thank you Brian and Mark. That is a good idea as far as keeping a journal and keeping track of my patterns. I never thought of doing that. Thank you for the advice on all the rest as well. I am an alcohol drinker socially and do notice that my clusters are triggered by alcohol so I try to limit myself and when I know one is coming to not drink at all. I am planning on doing as much research as possible to try to find something that helps me "tame" it as much as possible.
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MDR
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Elysburg Pa.
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Re: Hello, I am a new member!
Reply #4 - Jan 16th, 2020 at 10:22am
 
Read up on the vitamin D-3 regiment here on the board.

Mark.
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Jesse Quintana
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Lewiston, Idaho
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Re: Hello, I am a new member!
Reply #5 - Jan 16th, 2020 at 11:45am
 
Thanks, I was reading up on it a little yesterday and will read a little more up on it. I am willing to try all things that have a chance of helping.
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CDog
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Re: Hello, I am a new member!
Reply #6 - Jan 16th, 2020 at 5:32pm
 
I use The Migraine Buddy app. Very customizable and Cluster is one of the types you can choose.
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Jesse Quintana
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Lewiston, Idaho
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Re: Hello, I am a new member!
Reply #7 - Jan 16th, 2020 at 5:41pm
 
Thank you CDog, I will have to check it out.
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