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Cluster Headache Help and Support >> Getting to Know Ya >> My First Post Ever, I NEED HELP!!! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1275918368 Message started by foolclip281 on Jun 7th, 2010 at 9:46am |
Title: My First Post Ever, I NEED HELP!!! Post by foolclip281 on Jun 7th, 2010 at 9:46am
I'm sure many of you know my sort of story, but I just need you to hear it so I can be sure. I'm 26 and have had headaches since I was 9 or 10... The last couple of weeks they are getting worse and worse, I’ve been to every dr. under the sun in the past few years, as I'm sure you all have but have never been "diagnosed" with cluster headaches. I basically have diagnosed myself, via online information. It seems the last week or so I have been able to pay attention to my symptoms since I know what to look for... As I fall to sleep I can hear a "dripping" from my sinuses and know it's coming on, I will wake up out of my sleep from the pain, and it's been getting worse. I had a bad one about a year ago, I threw my back door open, took off across my backyard and dove headfirst into my garage door, my wife thought I had gone mad, but I see there are people on here that can understand where I’m coming from. I'm perfectly sane otherwise. Last week was the worst pain though, four a.m. I was on the floor of our bedroom, until five a.m. I took a hot shower, nothing helped... it got worse and worse, I had to be at work by 7 but at 7 I was on my couch crying, sobbing like a baby... I never cry from physical pain, but this time it broke me, squeezing my jaws brought relief to my temple, squeezing my temple I found relief elsewhere, when released, it was hell in my skull... I wanted to grab my pistol grip Mossberg 12 gauge from upstairs under my bed and end it all right there. I couldn't do it, I just needed help... My wife came down thinking I was talking to myself and found me under a blanket in the fetal position, she called my mom who lives minutes away (also who happens to be my boss, family business) Said I wasn't going to come in, my mom told her to come over and get 2 of her fiorinal with codeine and a bandana for my head... Side note: both my parent’s get headaches, my dad gets migraines with vomiting etc. and my mom just chronic tension type I'd say. Nonetheless, the meds started to work and put me into some well needed sleep for about an hour. I woke around nine feeling codeine groggy, but thankfully PAIN FREE! Nothing but a small, small, radiating "thud" from my right temple region.... which was MORE than bearable considering the former pain. I am currently on tramadol 50 mg. 3 times a day, which was working but does NOTHING to stop these bad ones, I have a prescription for verapamil for high bp I can pick up today, it was given to me by my doctor for high bp, but I see here after a quick viewing of the site that many of you guys are on it for clusters so that makes me hopeful as well. I guess I just need to know where does a guy in my shoes go from here? What meds have you guys found success? Combos of meds? What should I do??? I'm 99% Cluster are the kind I get... should I see a neurologist again and let him know I have looked at the symptoms and fit them all to a T? Any advice would be greatly appreciated... I hope to find both physical, and emotional help on this site from people with the same issue I have been plagued with my entire life. Thank you for taking time to read this, and respond if you can.
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Title: Re: My First Post Ever, I NEED HELP!!! Post by QnHeartMM on Jun 7th, 2010 at 10:18am
Well good day to you, glad that you have found us. It is important though to be properly diagnosed with CH. You want to find a neuro - but a headache specialist for sure.
You mentioned your doctor prescribed verapamil. It would be important to mention the dosage here as well. If you are diagnozed with CH then please read up on all the information we have to the left on Oxygen. it will become your friend in that you can abort CH quickly properly using oxygen. It is good you are part of a family business in this case as your mother will be understanding of your condition. We would advise against narcotics to treat CH however. Once you have all the proper tools you won't need it anyway. What part of the world are you in? |
Title: Re: My First Post Ever, I NEED HELP!!! Post by foolclip281 on Jun 7th, 2010 at 10:25am
Spring, TX and it is Lisinopril not Verapamil you guys, I'm sorry... Is this still known to be effective?
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Title: Re: My First Post Ever, I NEED HELP!!! Post by QnHeartMM on Jun 7th, 2010 at 10:30am
Someone more knowledgeable will come behind me but you need to provide dosage info as well.
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Title: Re: My First Post Ever, I NEED HELP!!! Post by Guiseppi on Jun 7th, 2010 at 10:32am
It would be best to get treated by a neurologist.....who specializes in headaches. Those can be hard to find depending on what part of the world you live in.
For the actual attacks, not much beats the oxygen route. It's cheap, no side effects, and will abort for me in about 6-10 minutes. Read the oxygen info tab on the left as it must be used correctly or its worthless. Your lungs need to get pure oxygen, no outside air, no exhaled air. Best accomplished using a high flow regulator at least 15 LPM, and a Non Re Breather Mask. There is info on the link you can print out and take to your doc as some are really hesitant to prescribe oxygen.....they prefer to fill your pockets with narcotics which do almost nothing for CH and cause far more problems then they solve. Verapamil is a common firstl line prevent med for CH. But we tend to use it at levels higher then what is prescribed for BP issues. Some go as high as 960 mg a day. Not a med to play fast and loose with as dangerously low BP can occur at too high a dose so work with your doctor on this one. Get some energy drinks to keep on hand. My favorite is sugar free Red Bull but any that contain caffeine and Taurine will work. Chug one down at the first sign of an attack. Many can abort or at least really reduce the inntensity of an attack that way. Welcome to the board, knowledge is your ally with CH, educate yourself and help your doc help you. Joe PS check out clusterbusters.com an alternative treatment site. |
Title: Re: My First Post Ever, I NEED HELP!!! Post by davidj35 on Jun 7th, 2010 at 1:08pm
Glad you found us. There is a lot of help to be found here from the people who have already started to respond to you. I can't say how important it is to get on board the oxygen train with a regulator that goes at minimum to 15 lpm and even better you get one that goes higher. We know what you are going through as we all have been there before. Listen to these folks, check out clusterbuster.com and get an 02 script ASAP. it can literally be a lifesaver. Hang in there, help is just a click away.
David |
Title: Re: My First Post Ever, I NEED HELP!!! Post by bejeeber on Jun 7th, 2010 at 1:16pm
Two more quick things:
If you haven't found out the hard way already, alcohol is a major trigger for most of us. Avoid when "in cycle". An extremely vigorous burst of exercise - or putting your nose up to the blasting/freezing car air conditioner vent and breathing deeply - can sometimes abort an attack, when you don't have anything else in your arsenal yet. You have to catch it right at the onset though. |
Title: Re: My First Post Ever, I NEED HELP!!! Post by Skyhawk5 on Jun 7th, 2010 at 9:37pm |
Title: Re: My First Post Ever, I NEED HELP!!! Post by davidj35 on Jun 8th, 2010 at 10:26am
First quiz I ever took that I was sorry I "passed".
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Title: Re: My First Post Ever, I NEED HELP!!! Post by Headache Boy uk on Jun 9th, 2010 at 2:46pm
Yo dude
As Joe said energy drinks can really help and are very straight a way too . I never go any where without a can of red bull now . thoughts and prayers Nigel |
Title: Re: My First Post Ever, I NEED HELP!!! Post by wimsey1 on Jun 9th, 2010 at 2:57pm
You know, I've read several of your posts foolclip, and for the life of me I can't figure out what you're really asking. In one post you talk about needing to have someone monitor your meds for fear, it seems, of relapsing into a dependency. Good for you. But then in subsequent posts you talk about taking codeine which almost never works on clusters, and is a bad idea in general. Then you ask for more med advice while apparently ignoring advice to seek out a headache specialist. Not trying to be hard assed here, but wassup dude? What do you really need? If it's just a place to vent, you got it! Otherwise, take the advice and seek a specialist; and maybe a counselor, too. You seem a bit confused. Blessings!
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Title: Re: My First Post Ever, I NEED HELP!!! Post by foolclip281 on Jun 9th, 2010 at 4:34pm
Hello,
To tell the truth I don't know what I need, I guess I just came to this sight seeking others who "felt my pain" to use a popular cliché. It seems maybe I just needed to vent, but I still value the advice. I've received more advice in 2 days than the last 2 years in regards to headaches in general. Maybe I tried to spill to much of who I am at once, to maximize my feedback results, and you view it as me being arrogant, ignorant, unable to focus, or unable set a goal to get working toward a pain free lifestyle. I don't know, I could care less. I have found many people so far on this site willing to listen, and give loving words of encouragement... Then again I have already been crossed by many of these "online experts" that have a virtual chip on their shoulder because they have been members since 2000 b.c. and have ten billion posts to their names. They ridicule, they judge, they post like editors, and talk like doctors. They may not mock outright, but undercover out the side of their mouths. I know their types; I just read their replies and keep it moving. I don't know why you say I refuse to see a headache specialist; I have in the past, and plan to again. Did it occur to you I was gathering all the info. I could prior to making an appointment? Again, I don't know why people get so agitated so easily. About the codeine thing, well I’m sorry but it did take away the pain. I don't care how against it some may be, what works for one may not work for others, do I plan/seek/desire to use that as a way to treat my pain? No... but I was in a desperate situation at the time on the frontline of a battle I am just beginning so I chose to go that route, for now. I have an addictive nature and avoid narcotics like the plague now, but as an apparent “sufferer” yourself I’d expect a bit more understanding from someone in my own shoes, as opposed to an average joe who doesn’t know the pain of these things. I hope that clears it up for you, good luck with your endeavors and God bless. |
Title: Re: My First Post Ever, I NEED HELP!!! Post by vietvet2tours on Jun 9th, 2010 at 5:39pm foolclip281 wrote on Jun 9th, 2010 at 4:34pm:
Sounds like this ain't your first rodeo. I've read all of your fifteen posts and no one has even remotely sounded arrogant nor has one of us oldtimers given anything but good advice. Get over yourself. Potter |
Title: Re: My First Post Ever, I NEED HELP!!! Post by Linda_Howell on Jun 9th, 2010 at 10:24pm Quote:
For someone very new to this site....you've got it pegged. ;) |
Title: Re: My First Post Ever, I NEED HELP!!! Post by wimsey1 on Jun 11th, 2010 at 8:11am
Thanks. Yeah, new to the site but not to CHs. Still, I thought I was the only one who could understand what I was going through (for years and years) and when I found CH.com, I couldn't read the posts without crying. Not sure why I had, and have, such an emotional reaction but I do. I guess it's not having to explain myself and the incredibly helpful advice. Also, I liked very much that no one sugar coated a damn thing, or heistated to offer correction. Good stuff. Empathy yes, sympathy-it's for the birds and the well meaning.
I get you're frustrated foolclip, but you are definitely trying too hard. No one means you harm. And thanks for the "God Bless" back! |
Title: Re: My First Post Ever, I NEED HELP!!! Post by anthony g on Jun 11th, 2010 at 8:37am
very nicely said wimsley1! This place is a GODSEND for ALL!!
So glad to be part of it!!! thanks all!!! Anthony |
Title: Re: My First Post Ever, I NEED HELP!!! Post by Brew on Jun 11th, 2010 at 2:06pm wimsey1 wrote on Jun 11th, 2010 at 8:11am:
A wise man once told me that if I was looking for sympathy, I could find it in the dictionary - between "shit" and "syphilis." |
Title: Re: My First Post Ever, I NEED HELP!!! Post by bonkers on Jun 11th, 2010 at 3:25pm
Hi foolclip281,
Welcome. Folks here are mostly just like you; looking to find their way in this weird world while suffering these awful headaches. I don't have much to offer save saying my son pretty much used up the effectiveness of the common CH drugs and ended up with a dependency on Methadone. It was the only thing that finally brought him just a bit of relief. Psychedelics will, we believe, be our saving grace but the addiction is proving to be much more difficult to conquer than we expected it to be. Just so you're aware of how exceptionally slippery a slope you're on. The psychological dependency is very, very tricky and may for us require professional help. If you can avoid it at the outset, you'll be better off. Good luck. Ron |
Title: Re: My First Post Ever, I NEED HELP!!! Post by Guiseppi on Jun 11th, 2010 at 3:32pm bonkers wrote on Jun 11th, 2010 at 3:25pm:
DO NOT ignore that voice of experience. Joe |
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