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Topic: I am noob, hear me rant (Read 311 times) |
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Kain-Xavier
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I am noob, hear me rant
« on: Mar 17th, 2007, 8:26am » |
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I have had cluster headaches since I was 11 or 12. I am now 22 so I have been dealing with "the beast" for a decade. Unfortunately, I have found no cause nor solution to my ailment.
So where to begin...
I am fortunate in that my cluster-headache attacks rarely happen at night. In fact, they seem to happen most commonly after I have been awake for a few hours.
For me, the attacks usually last 45 minutes to an hour. I think the shortest attack I've had only lasted 20 minutes. The longest attack was in the neighborhood of two hours, but really, I stop caring about the time once it exceeds an hour. I rarely have more than one attack per day (thank God,) but I tend to have one attack every other day for an indeterminate period of time. Towards the end of my "cycle" the attacks are spaced out to one-per-week or one every two weeks.
My cluster headaches can get very creative in how they wish to torture me. Generally, they're satisfied with focusing the pain on my right eye. They like to spice things up now and again with the left eye. When they're feeling extra adventurous (which is rare thankfully,) the pain will shift from one eye to the other during an attack. On extremely rare occasions, the pain will be focused on both eyes with equal intensity. This has only happened three times, but the pain defies description.
I'm fairly tolerant of pain, but the bad attacks always leave me exhausted. I've also been rendered unconscious by several attacks. Not fainting mind you, but enough for me to curl up in pain on my bed and pass out.
During the pain, the afflicted eye(s) will tear and become bloodshot. Just today, I noticed that the pupil of my right eye (the afflicted eye,) was not dilating. And earlier on in the week, I could have sworn the afflicted eye took on a hazel shade rather than its normal brown. (I'll need to look out for that in the future.) I also become very sensitive to sound and light during episodes and nauseous as a result of the pain.
As far as treatments go, I've tried a few but found none of them to work reliably.
Pain relievers do nothing.
Imitrex nasal spray did largely nothing. On occasion, it would shorten the life-span of the cluster headache. Mostly it just dripped down into my throat and tasted bad. :p
I also decided to stop using Imitrex altogether after trying the injection. My brain felt like it was on fire, and my heart rate slowed down; it felt like I was going to have a stroke. This lasted for about four hours, and I kept the phone near me in case I had to dial 911.
I already drink a large amount of water (I hate being thirsty,) so that option's out.
About a year back, I read that there was study showing people suffering from cluster headaches had low potassium and melatonin levels so I've been taking supplements. However, I've had cluster headaches every other day for the past two weeks so that also proves to be unreliable for me.
Recently, I met someone in person who also suffers from cluster headaches. He had suggested taurine which is something commonly found in energy drinks so I will look into that next.
And I think that about wraps it up. I'm not sure how active of a forum member I will be, but I want to thank all of the people who maintain and contribute information to this website. I really appreciate that someone created an outlet for sufferers of this horrible disease/curse/genetic disorder/affliction/whatever it is.
Oh right, I should also add that I do not smoke or drink. I have also never used an illicit substance.
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| « Last Edit: Mar 17th, 2007, 8:41am by Kain-Xavier » |
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Cathi04
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Re: I am noob, hear me rant
« Reply #1 on: Mar 17th, 2007, 9:53am » |
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K-X- Welcome to Clusterville. I'm sorry you found a need to seek this place out, but very glad you found it. If this sounds like a drill, forgive me, please. What I'm going to say IS important. Firstly, have you been diagnosed by a Neuro? Have you tried the Cluster Quiz at the left here? Have you tried 02? Verapamil? There is a ton of knowledge about CH here. Please, read,read,read! Once you have done that, please ask,ask,ask! That said, Mr Noobie, plenty of people are just waiting to offer you their thoughts, so please don't go anywhere for awhile.....heehee.... you just might come to like it here!
If you need more one-on one help, feel free to PM me, we'll get you squared away, OK?
PF to you Kain Xavier!
Cathi
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Guiseppi
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Re: I am noob, hear me rant
« Reply #2 on: Mar 17th, 2007, 10:31am » |
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Just a strong suggestion you give oxygen a try. Read the link on it becuase used wrong it's worthless. You have to fire it off at the beginning of the attack, using a non re breather mask, at a high flow rate, up to 15 litres per minute or "lpm" Will abort the majority of my attacks in less then 10 minutes.
The other supplement I'd suggest is magnesium and calcium. For the several years I've been on these it seems my attacks have been less severe. I've seen other people post similar successes. And please do stick around. You'll get far more help and knowledge from this board then most doctors!
Guiseppi
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TonyG1
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Re: I am noob, hear me rant
« Reply #3 on: Mar 17th, 2007, 10:37am » |
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on Mar 17th, 2007, 8:26am, Kain-Xavier wrote:I have had cluster headaches since I was 11 or 12. I am now 22 so I have been dealing with "the beast" for a decade. Unfortunately, I have found no cause nor solution to my ailment.
So where to begin...
I am fortunate in that my cluster-headache attacks rarely happen at night. In fact, they seem to happen most commonly after I have been awake for a few hours.
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Kain-X -- It sucks that these things started as such an early age for you !!!! One thing I didn't see you mention was preventatives? I'm sure I'm not telling you anything you don't already know but there are a number of preventive treatments that work well for a number of us (i.e. Prednisone (as a transitional drug), Verapamil (My favorite unless it ever stops working), and a number of others...)
Wishing you many pain free days !!
T.
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| « Last Edit: Mar 17th, 2007, 10:37am by Tony3901 » |
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Kain-Xavier
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Re: I am noob, hear me rant
« Reply #4 on: Mar 18th, 2007, 5:53am » |
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on Mar 17th, 2007, 9:53am, Cathi04 wrote:| Firstly, have you been diagnosed by a Neuro? Have you tried the Cluster Quiz at the left here? Have you tried 02? Verapamil? |
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I have been diagnosed by a neurologist. I have not tried the quiz, but I will. (I filled out the survey.)
I have not tried oxygen or verpamil. To be honest, it's been a while since I've been to a neurologist. It's a bit of a nightmare to get non-emergency coverage when you're an out-of-state college student still under your parent's health plan. Are either of those available over-the-counter? If not, I'll see if I can't get things moving forward with my medical coverage.
Edit: Nevermind, I have my answer about whether or not those treatments are available over-the-counter.
on Mar 17th, 2007, 10:31am, Guiseppi wrote:| The other supplement I'd suggest is magnesium and calcium. |
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I take a vitamin supplement every day. It includes magnesium and calcium as well as other necessary minerals. I appreciate the suggestion all the same. 
And I just wanted to thank everyone who responded to my thread. Yesterday was one of my more uncomfortable attacks, and you lifted my spirits up a bit.
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| « Last Edit: Mar 18th, 2007, 5:59am by Kain-Xavier » |
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nani
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Re: I am noob, hear me rant
« Reply #5 on: Mar 18th, 2007, 11:42am » |
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Hi Kain, welcome. Read up on kudzu, Red Bull and other energy drinks on the meds board. They can work quite well for many of us. Kudzu as a prevent and the drinks as abortives. Good luck and keep us posted.
pain free wishes, nani
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ClusterChuck
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Re: I am noob, hear me rant
« Reply #6 on: Mar 19th, 2007, 12:36pm » |
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Well, I am sorry you are here, but if you need to be, I am glad you found us, and have joined. WELCOME ABOARD!!!
Something to try as an abortive, that works for some: hyperventilating. Do it to the point that you feel dizzy, and even your fingers tingle. What it does is flood your body with the oxygen from the ambient air, and depletes your body's supply of CO2. It doesn't work for everybody, but it is free, and you don't need any supplies. It doesn't hurt to try it!
Good luck
Chuck
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Thomas Fuller
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Judge_Smails
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Re: I am noob, hear me rant
« Reply #7 on: Mar 19th, 2007, 2:11pm » |
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K-X, don't be so down on the college treatment options. I suffered from migraines since I was about 5 years old that developed into CH when I was a teen. The first time I got a proper diagnosis was when I went away to college. You'd be surprised at the knowledge of some of the campus Dr's - they may not be a neuro, but they deal with so many students and symptoms that chances are they've treated someone with CH before.
Not sure how it works these days, but I didn't have health insurance in college so any treatment/prescriptions I got from the infirmary was billed directly to my student account, that way it became just a small piece in the bigger tuition pie.
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seasonalboomer
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Re: I am noob, hear me rant
« Reply #8 on: Mar 19th, 2007, 2:22pm » |
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K-X,
Oxygen could a good answer for you as it sounds as though the majority of your hits are within the confines of your home/room. O2 works 60-80% of the time for me and many others.
As you are quite young you may want to try the imitrex injection another try (unless you truly have heart issues). You, by virtue of how little you've exposed your system to, may have gotten pretty revved up when you took the Imitrex. Maybe after you've had the chance to try and prepare for the "feelings" you get (I get them too) you'll know what to expect and ride with them.
Just a thought.
Anyway, welcome and sorry you have to be here. They can be managed and life does go on.
Scott
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