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Cluster Headache Help and Support >> Getting to Know Ya >> My first Post - Hello! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1350915887 Message started by Melissa W. on Oct 22nd, 2012 at 10:24am |
Title: My first Post - Hello! Post by Melissa W. on Oct 22nd, 2012 at 10:24am
Hi! This is my first post and I want to start by saying I'm so happy I found this. I've been dealing with "What is wrong with my head" (as I'm sure many of you did.) for the past 7-8 years. I'm 21 years old and I'm from a suburb of Pittsburgh, PA! I never really made a point to find out what was wrong because I always procrastinate getting help until the end of my "cluster period".
However, about 9 months to a year ago I asked my family doctor about them and got a "Well if you had googled your symptoms you would know that you have cluster headaches, theres nothing really wrong with you and you just wasted both yours and my time because I can't do anything for you." That was discouraging but he did give me migrane med samples to try when they came back, which happend a week ago. Needless to say I havn't slept much since. I decided to take my Doctors oh-so-helpful advice and do my own research. Previously not only was I self diagnosed but I was also self medicating. When I was in highschool i did my fair share of expirementing with marijuana. In 2010 a freind convinced me to try it to releave my head ache and it actually worked instantaniously! I would wake up about 2 hours after falling asleep(I love the nickname "Alarm Clock Headache" because thats what I called it before I had a name for it!); smoke a smal amount of marijuana and sleep through the rest of the night. After several years of pacing and craying for hours this was amazing!) However, half way through my last cycle, about a year ago, I started to wake up again(wake up at 2am, fall asleep at 3am, wake up at 4 am, fall asleep at five, back up and 6, cry in the shower until I leave for work at 7!). And from there we end up at today. I've read alot and I can't tell you how good it feels to know that I am not alone. I am really looking for any sort of advice about releiving some of the pain associated with this disorder. My doctor truly does not understand the impact that this is having on my life and I just can't imagion that "suck it up and deal with it." is acceptable. I read that botox injections into your optical nerve and keeping oxygen near are commen ways of acheiving releif. My doctor told me that oxygen would be a waste of time and money because of the timing between my cluster periods and a needle in my eye is really scary. I would really appriciate any plan of releif that does not include prescrition pain killers as I really don't like to be medicated but I'm getting to a point where I'll do anything. My pain is ALWAYS behind my left eye. This is a major consern for me because I read that after time it can cause perminante nerve damage. Is this true? I was also suprised to find that my frequent conjunctivitis. My left eye is always gunky and saggy when I get headaches. The left side of my nose always being stuffy can also be to side effects of the cluster headache. Is this true? Please help! I'm ehuasted and I refuse to let this run my life! :o |
Title: Re: My first Post - Hello! Post by BobG on Oct 22nd, 2012 at 1:04pm
Welcome to the board, Melissa.
Your doctor is wrong to say "suck it up and deal with it". There are ways to deal with it. One way is to ignore his advise about oxygen. Oxygen is a miracle for many, many people here. There is a yellow button on the left side of your screen marked oxygen info.....go there to learn what is needed and how to use it. I can't say anything about botox. I've never used that treatment. But, many here have and I'm sure they will be along soon with answers. The watering, saggy eye is normal. The runny/stuffy nose is normal. Pain in the cheek/side of the nose is normal. Pain along the upper and lower gum line is normal. Pain/stiffness in the neck (your's on the left side, top of the neck/botton on the skull where the trigeminal nerve exits the skull) is normal. And, no, there will be no permanent nerve damage. (Does that sound like a double negative? Maybe it should be yes, there will be no damage.) Please read all you can here. There's at least a thousand year's worth of experience and advice waiting for you. Please keep us informed on how you are doing. |
Title: Re: My first Post - Hello! Post by Melissa W. on Oct 22nd, 2012 at 2:11pm
Thank you very much for all of your advise! It is greatly appriciated. I've read alot and I am positive that I have text book- cluster headaches. It seems finding a specialist is my next step. This website is without a doubt the best tool I've discovered so far!
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Title: Re: My first Post - Hello! Post by helplesswife on Oct 28th, 2012 at 1:54pm Bob Johnson wrote on Oct 22nd, 2012 at 10:34am:
I completely agree that it's important to rule out any other diseases or disorders, but beyond that, and from what my husband and I are finding out, this is nothing but a self-help project that relies mainly on the information and advice of people with the same experience (such as on this board). Doctors don't seem to know anything about this (or care to learn), the drugs that are prescribed (although helpful in some cases) are strong, toxic and/or addictive and often do nothing to bring relief, and the nature of the whole thing is so elusive and changing, that it seems the only way is to take things into your own hands, research, become informed and think critically about everything you learn. Unless you are a very lucky person who finds a genuine doctor who takes an interest, listens and does't just give you a bunch of drugs then send you on your way, it's very difficult to rely on that route. |
Title: Re: My first Post - Hello! Post by wicket on Oct 29th, 2012 at 1:50am
Any doctor that tells you that you should have "googled your symptoms" and that not doing so is a waste of both of your time needs to be stripped of his license. I'd have told him to go soak his head.
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Title: Re: My first Post - Hello! Post by Kate in Oz on Oct 29th, 2012 at 8:18am
So glad you found this place Melissa, it changes lives!!
Please do check out oxygen, I swear by it, no drugs anymore just a tank by the bed for if/when CH strikes. I wish you all the very best, I know that the good people here will be able to help you just like they helped me :) Really, do get yourself an oxygen set up, you'll be amazed!! ;) Kate |
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