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Last night around 7 pm (Read 3269 times)
Ant
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Last night around 7 pm
Apr 9th, 2012 at 2:40pm
 
So last night around 7 o'clock I started to get a headache. I didn't think anything of it I thought it would just go away so I didn't take any medication at first. It finally hit hard so I took a butalbital. I didn't even touch it. I was trying to hold the oxygen mask on my face but I couldn't do it for some reason I felt I couldn't breathe. After about an hour and a half I decided to take another butalbital. NOTHING!!! At this point I think all my kids and my wife freaking out on me. I couldn't stay still, I couldn't  lay down and couldn't sit outside I didn't know what to do. Finally I decided to go to the emergency room this would be the first time I've actually went. I registered set down for about a half hour and then they assessed me. They told me to sit down and would be 10 to 20 minutes. Two hours later we are still sitting there I feel so bad for my wife. I decided to just go home because it would've been the same as sitting there albeit more comfortable.   I had her take me to the store to buy a Mountain Dew. I pounded that and took one more butalbital. At that point im not sure if I fell asleep because my headache went away or just from the exhaustion. I didn't go to work today because I feel so exhausted so worn down. I can still feel a slight poke my eye. Hopefully I can catch it in time tonight. 
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Jeannie
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Re: Last night around 7 pm
Reply #1 - Apr 9th, 2012 at 2:47pm
 
Letting it get away from you is a big mistake... one I used to make often, myself.  My husband is really good now at making me do something about my CH the minute it begins.  I start with an energy drink and head to the O2 at the first twinge.  It makes a world of difference.  It's funny though, how I still deny a hit after all these years.  Maybe you could ask your wife to MAKE you take action when she sees signs that you have a CH coming? 
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Re: Last night around 7 pm
Reply #2 - Apr 9th, 2012 at 4:30pm
 
Quote:
I didn't go to work today because I feel so exhausted so worn down.

Imagine feeling like that every day for a month.

Or three months.

Or a year.

Or - like some - can't even remember when they DIDN'T feel like that.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Bob Johnson
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Re: Last night around 7 pm
Reply #3 - Apr 9th, 2012 at 10:44pm
 
I've just read all 23 of your messages and:

1. don't see any report that you are seeing, or have made conact with, a headache specialist;
2. the med you used (last message) is useless for Cluster;
3. in an early message you said that you were refusing to use any of the standard meds used for Cluster.
4. Trip to the ER didn't benefit you.

IF I've read your posts accuately, then the bottom line is:
You are doing everything which is contrary to what is needed to get a handle on Cluster.
==========
Docs who know how to treat headache are a must. Most docs have little useful training/experience in this complex area of medicine. ERs are notoriously poor sources of help.

The range of meds we have now are effective and, when used wisely, are safe. No med is free of any side effects but it's our job to learn how to use them with judgment.
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Bob Johnson
 
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wimsey1
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Re: Last night around 7 pm
Reply #4 - Apr 10th, 2012 at 7:28am
 
Good words from Bob, there. Your abortive routine sucks...to put it plainly. The only question you have to ask yourself is not what meds won't I take, but rather, how long do I want to suffer like this? We're not saying you can be cured. We're saying you don't have to be a helpless victim. Fight back. Get some decent weapons in your arsenal. Stand up to this beast and throw some real heavyweight weapons at it. Good luck, and God bless. lance
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Linda_Howell
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Re: Last night around 7 pm
Reply #5 - Apr 10th, 2012 at 4:43pm
 
Yes, good advice from Bob and Lance  AND yet another good example of why NOT to go to the ER for CH.
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Ant
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Re: Last night around 7 pm
Reply #6 - Apr 11th, 2012 at 10:36am
 
Bob,
I have lived with Clusters for over 12 years now, I am 34 years old. I have made contact with a headache specialist, I’ve had two MRI’s and I’ve also talked to a doc who gets clusters as well. They always mention several different treatments but it seams like the docs are always reluctant for some reason. In fact I feel at times that docs think I’m lying.
Sorry if I am not on here everyday. In fact it’s almost nice not coming on here everyday because that means I am only episodic. So for the posts that you have read of mine, yes they are very sporadic and I don’t believe they would tell the complete story. Regardless, I’m not looking for anyone’s pity or for anyone to tell me how to deal with my clusters or any doctoral advice since I don’t believe any of us (or at least I’m not) are doctors anyway.
I’ve done this for over 12 years and Ill keep doing it for however long I have to. I do take O2 and it does seem to help most of the time but when I get to a certain point, there is no returning. I do take the Fioricet and although Bob states it doesn't work, maybe for him it doesn't. I’ve had clusters for over 12 years and Fioricet is the only thing that will even dull the pain so for you to say it doesn’t work then maybe my docs have misdiagnosed me over the past 12 years and I should start looking at other alternatives. I’m not sure, if I catch my cluster in time then yes it does work and several other people on here have stated it works for them as well.
I should probably be on a prophylactic but I am not at this point and I do agree, most docs don’t know anything about a cluster. I guess I was just frustrated and expressing myself in my post. But life goes on, I don’t dwell on the headaches. They don’t scare me anymore. I may be worn down for a few days every so often but for 12 years now I’ve learned to just deal with it. I’m not saying I am any stronger than anyone here. I could cry like a baby because of the cluster but I do know that in the end it will go away. Until there is some concrete evidence of what even causes a cluster instead of theoretical rhetoric, I think Ill stick to what I’ve been doing since I do know it works or at least for the most part it works.

I would be delighted if anyone has any literature on further R&D for Cluster headaches.



Lance,
What is your abortive? I come here sometimes and I don’t mean this toward anyway but sometimes I feel since I’m not on here everyday and have only posted 23 times that people treat me like I don’t know shit. Believe me, I have read about everything I can about cluster headaches. I have been to several doctors not just one. It took about 10 years before anyone could even name it. Now that it has a name after 12 years, I still haven’t moved anywhere. Still stuck with O2 and Fioricet, which works. But if there is something better then I would like to know. I understand that treatment is different for every person but whenever someone comes on and says your doing it wrong, why isn’t there any advice that follows or suggestions.
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Potter
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Re: Last night around 7 pm
Reply #7 - Apr 11th, 2012 at 10:54am
 
   Haven't seen you on cb.com.  Give it a whirl cuz it works.

       Potter
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Ant
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Re: Last night around 7 pm
Reply #8 - Apr 11th, 2012 at 11:16am
 
I have looked at CB.com (and no not Careerbuilders!)....I am very interested in this. The only issue is the wife, I do respect her and how she feels. But it also has come to a point that CB may work. Ive started my research on this matter. I think this medication is something I could find fairly easy. I just want to do a bit more research. Maybe talk to someone in person instead of on a forum. Appreciate your response Viet!
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Potter
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Re: Last night around 7 pm
Reply #9 - Apr 11th, 2012 at 11:43am
 
We could study our navels forever but till ya scrub the lint out ya ain't solved the problem.  I'm 3000 days plus or minus pain free and I attribute the pain free time to mooshies.  I have no reason to bullshit you.

    Potter
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Ant
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Re: Last night around 7 pm
Reply #10 - Apr 11th, 2012 at 11:51am
 
Viet,
     I do believe you, 100%. Do you use the Silk Highway or do you have a local pharmacy? i would rather use local if i can find one. anyway from Utah?
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Potter
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Re: Last night around 7 pm
Reply #11 - Apr 11th, 2012 at 11:59am
 
Local.

  Potter
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Re: Last night around 7 pm
Reply #12 - Apr 11th, 2012 at 6:06pm
 
I have been a cluster sufferer for over 20 years, although it took 15 for the doc to realize it is what it is (something about women not getting these until I went to a headache specialist who said otherwise).  At any rate, in addition to a preventative like verapamil (which worked for a few years), I use O2, and Imitrix injections as abortives.  I am currently on Topomax as my new prevent so for those few breakthroughs, I use Red Bull and O2 at home, Imitrix injects when out.  They work.  I refuse to deal with pain.  I refuse to subject my loved ones to my pain.  Spacey is better than pain!  Just sayin'
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Re: Last night around 7 pm
Reply #13 - Apr 12th, 2012 at 7:49am
 
My routine is thus:

At breakfast: 320mg verapamil, 10K units D3, 2K units fish oil, B Complex vitamin

At night: 320mg verapamil, 125mg lithium, 12mg melatonin, 35mg amitriptyline

Abortives: chug a double Monster, then O2 using a demand flow valve and nonrebreather mask at 60lpm ; if not aborted quickly then I alternate using imitrex injections at 3mg (.25 mil) or .25ml migrnal

That's it, but note the high levels of all meds and O2. I am chronic, have been for 5 years (out of 35 years of the beast) and with the above, can generally abort in 3-5 minutes. Used to take 45 minutes. Sometimes, between 10:30AM and 2:30PM, I'm on the tank every 20 minutes, but I'm still aborting and haven't had one rise to a KIP 7+ in 3 years of the above routine.

We mean nothing bad when we say your routine sucks. We feel badly that you suffer. You say you are now in contact with a headache specialist which is not the same as being under one's care. Hopefully that will happen for you soon. Regular doctors do tend to be cautiious in dealing with CHs and in prescribing meds. It's because they know so little. Even the doc who gets them may not be aware of the latest or most effective routines. We wish and pray nothing but the best for you. Hang in there and hang around here. It's your best line of defense and we are enriched by everyone who comes here to share. God bless. lance
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Ant
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Re: Last night around 7 pm
Reply #14 - Apr 16th, 2012 at 11:57am
 
Lance,
     I appreciate your help and info. In fact I appreciate everyones. My cycle has seemed really long and a lot worse this time around, so I'm sorry if I have offended anyone. My abortive does suck, Mountain Dew, Butalbitol and O2. Doesn't seem to help this time around, in fact doesnt budge it!!! Have a new appointment with a new Neuro in Utah this Thursday Maya Thomas, anyone heard of her?

No hard feelings, Ive just been going through a lot the last 4 weeks, I'm sure some of you can understand.
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Re: Last night around 7 pm
Reply #15 - Apr 16th, 2012 at 4:27pm
 
Ant,

With all respect, as an over 34 year veteran of these things, of which the last 10 or so have been chronic; and also as a former almost junkie because of fioricet and other narcs/opiates given me by my Dr, I say categorically they are dangerous, and have no place in a clusterheads arsenal.  This is not an attack on you so please don't take it as one, but as you have found having to take 3 for one attack, you will continue to have to take more and more to get any relief.  In fact, if you will honestly look at yourself and what you are doing you are already dependent on them.  Again, this is NOT an attack.  I recognize myself in your story, and I remember the agony of three months weaning myself off of the things.  At first you think, it won't happen to me, but take my word for it, it WILL if you continue.  Read Svenn's story stickied at the top of the page called "Dancing with the Devil".  Like you and me he was prescribed these things by a Dr.  None of us wanted to get hooked, and fortunately I recognized what was happening because someone else cared enough to talk to me like I am trying to do for you.  For your family's sake get off of it!  From hindsight I can tell you that what I thought was relief that I was getting from the meds was actually just the attack ending about the same time as the meds were kicking in.  Oral meds take way to long to be assimilated to do any good for any but the rare long attack, and as you saw they really don't do much for them. 

I strongly recommend you look at the CB pages, have your wife really research it as well.  We are not talking about getting high, but using a prophylactic dose that usually is about a quarter of what you would use recreationally.  I personally wish I could go that route, but with Law Enforcement officers in my family and home I cannot in good conscience ask them to look the other way.  I wish I could!

O2 at proper flow rates using a O2ptimask will give relief much faster than fioricet can dissolve, let alone be absorbed.  An energy drink slammed at the first sign of a hit and followed by O2 is especially effective for most of us.  In fact, I use them for most of my hits.  The Taurene seems to hypercharge the caffeine making it work a little faster than Mountain Dew, although I also use coffee sometimes.  I do find if I have enough coffee in my system it will work somewhat as a preventative also.

I have used a number of the medical prevents, but due to side effects have not found them to be profitable.  Right now I am hanging my hopes on BOL being tested.

I hope you find this helpful.  If you want to talk with someone personally about the CB method look into their convention this summer.  I have been to a couple for the education and found it very profitable, even though as I said I can't say I participate.

All the best,
Jerry
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