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Trace

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Posts posted by Trace

  1. Hello Darby.

    I am new here as well (2-3 weeks).  I am sorry that you are stuggling with these attacks but I do have some good news.  The people on this forum really know what they are talking about.  In just the short amount of time that I have been here they have led me to some really useful tips that have been priceless in fighting the attacks.  I certainly have not tried everything that is talked about here but in my case I have found a lot of success with melatonin (6mg) before bed and an energy drink (redbull) when I feel an attack coming on. 

    People here I very adament about getting oxygen treatment as well.  I have not gotten mine in place yet but I will.  Many people here claim that it is the very best thing to help beat these attacks. 

    I can say with confidence that everyone here has welcomed me with open arms and have been very friendly in answering my questions so feel free to ask away and good luck researching for yourself. 

  2. I remember at least one person, tingeling, saying that using one of those light machines that are supposed to relieve seasonal affective disorder was helpful for her CH

    This is very interesting. 

    It would make more sense to look at light cycles but I would imagine that something like that would be really easy to confirm.  I would be really interested to speak to someone about this from Alaska for instance.  Does anyone know if we have any busters up there?

    Thanks for the article CHfather. 

  3. I have been thinking about this too Oscar.  I find it very odd that these attacks come in regular cycles for some people.  That immediately makes me think about outside cyclical forces as a cause or at least potential triggers.  Weather is the first thing I thought about.  I was having some trouble finding any serious patterns though that I could use. 

    Since then I have moved to lunar cycles and other gravitational forces (like the equinoxes) because I too get attacks right at spring.  Again it is tough finding any sort of serious correlation but I think you might be on the right path here and we need to keep looking. 

  4. I've often wonder what life is like for an episodic. To be hammered for weeks and months, then have it go away for months or years. It seems like a very slow process to figuring out a pattern. But I can assure you, there will be a pattern, of sorts. 

    Hopefully I will be able to let you know.  Who knows?  For all I know this could simply be the beginning of chronic attacks for the next 30 years. 

    OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days.

    OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days.

    :o I have no reaction to that.  I dont know what to say. 

    I come to this site and read stories from people that break my heart, and make me thankful for how good I have it.

    I am thinking the same thing but my message to them and you is that things are getting better.  Your numbers are growing and there will be more voices heard.  Your suffering will not be in vein.  We will continue the efforts to get recognition in the hopes that future suffers dont have to deal with what you have gone through. 

  5. Clusters are unique for each person, and often vary from cycle to cycle. So when you do find a solution, don't relax and think you have it sorted. The demon will find away around it.

    Dammit.  That seems to be the consensus.  I am going to work really hard to be preventative as well.  I have been looking around at the myriad of ways people try to fight these attacks and am going to threw as many as I can that are feasible for me. 

    I do have one other issue too with all of this.  This is still all very new to me and I believe that this is my first cycle (hopefully cycle).  How do I know that what I am doing is working and not simply it being the end of a cycle?  I guess it is just a bunch of trial and error until you can nail down your own pattern. 

    At the very least this is all extremely interesting to me.  Sorry I have to be my own guinea pig in all this but this is a world I never knew existed 30 days ago.  The term cluster headache never showed up on all the pages I had been reading.  Now I have all this new information and I still need to sort it all out. 

    Still happy to report some real success with energy drinks and melatonin at night.  Heard this song yesterday and thought of all CH suffers around the world.  We cant let this define who we are ...

    Take care of yourselves everyone but be sure to live when you're not having an attack. 

  6. Good attitude. A bit naive perhaps, but nice'n positive at least. Now I'd suggest arming yourself to the teeth in preparation for fierce battle - just in case.

    Naive?  Very possible but I do want to join your fight against the beast and help develop new ways to be more offensive than defensive.   

    If it seems like some of us are panicky reactionary paranoid alarmists - well in this case at least, we aren't.We're just highly aware of the extremely typical CH scenario, not just from our own experiences (30+ years for me), but from poring over thousands of reports from CH'ers. And we've had some great successes by way of very aggressive proactive beast fighting strategies and contingency planning. I know Ajax has become a master of the CH contingency planning, and like most of us has had to put it all to use in full force when hell has broken loose and the fit has hit the shan , as it typically does.  

    1102

    Absolutely not.  I am eternally thankful for all the help I have received already from this group.  I understand the fact that I am very new to this and you guys and gals are the grizzled veterans.  I have every intention of taking the work you guys have already done and add to it as much as I can.  I am more concerned about piling medical costs to be honest.  I do not have the funds to build a serious stockpile of weapons to fight these attacks.  I have to be careful with my approaches to these treatments. 

  7. careful with the next one they will peddle on you...Prednisone...  It was my only solution before this site.  Skip that one if you can.

    Thanks for the heads up on that one.  Prednisone did not come up in the conversation but I have read that on other sites while researching this.  It is something that I am vaguely familiar with but only because I used to have to give it to my dog. 

  8. but did she prescribe oxygen????   If not, heed all the voices here and call her back and ask for it. 

    She did not.  I will be sure to do that during my follow up. 

    When you say "she put me on verapamil," does that mean you're going to start taking it?  Although there is debate about this, it is generally believed to limit the effectiveness of busting though probably not to completely block it.  What's the dosage?

    I was curious about that.  I am going to start it.  She has me on 130mg and ramping up to 260mg after 5 days time.

    I wasnt planning on taking her up on the injections but after reading more and more advice saying to develop backup plans for backup plans I am rethinking that.   

  9. Having backups is a very good point.  When I go in next I am going to bring that up. 

    I have every intention on making it to Chicago for the conference.  It is a pretty easy trip for me and only about a 5 hour drive.

  10. As I stated in a previous thread I was referred to a neurologist with an appointment 4 weeks out.  Using some of the treatments suggested here (melatonin/energy drinks) I was able to start stringing together a few good nights sleep in a row and I felt more in control of these attacks and my life.  I cant thank you enough.  One of the first things I did was called the neurologist and requested to have my appointment moved up if there was a cancellation.  Yesterday I got a call saying that was the case and that I could be seen later that day.  Awesome!

    I went in for basically an initial exam, ran me through all their questions about medical history, symptoms, blah blah blah.  The doctors checked me out and was fairly confident that I was experiencing CH but, this being my first cycle, didn't want to nail down a diagnosis just yet.  I told her about my own research and the treatments Ive learned here.  Mentioned psilocybin and she gave me the blanket response that she hadn't heard of it.  About what I was expecting but maybe it will encourage her to look into it further sometime. 

    She put me on verapamil and wants me back for an MRI just to rule out anything more serious.  She claimed that she didn't expect anything but better to be safe than sorry.  She's right.  I would rather not do it but just in case, why not? 

    I am still very interested in busting to see if I can break the cycle so I am not eating a handful of pills every night.  I just don't like that.  She offered some injection that I could do myself to abort an attack but I declined as the energy drinks have been doing a good job of that so far and at $2 a pop, it seems like the best solution for me.  Don't really care to inject myself if I can avoid it. 

    Anyway, I am sure you all have already gone through this experience but I just wanted to report mine.  I am optimistic that I can get the beast by the throat and knock it out for good but this is a good first step. 

    Thank you all for the support and the acceptance in this group.  If I can offer anyone any help at all please just ask. 

  11. Jeff - I have found some success with energy drinks and you are absolutely correct that the post attack exaustion just completely nulifies any caffiene/taurine rush.  No worries there. 

    Victor - That is absurd.  I am very new to the world of CH but I know that oxygen treatment is not only common but very effective.  I have not yet got setup with oxygen but I am doing pretty well with the melatonin/energy drink one-two punch.  Thank you very much. 

    MG - Iowa ... what can I say?  I love it here.  It is beautiful.  The warm summers the cold winters and as much sweet corn as you can possibly get your hands on.  It's home.  I would imagine that there are parts of Northen England that remind you of Iowa depending on how long it has been since you left. 

  12. That was amazing.  What a game to actually be at.  Yeah it was just one game very early in the season but that was domination.  They really woke up for the challenge. 

    You already said everything about the game but I just cannot get over Anibal Sanchez's 17 Ks.  Amazing!

  13. That was tough to watch again.  My reaction was essentailly the same. 

    It is still really early but I would really like to see the Tigers win this series.  Even if it was just a warning shot to the rest of the league that they are going to compete with the best. 

    Have fun today!  Go Tigers!

  14. Please do but when you say something to Coke be sure to duck really quickly.  He seems like the type to take a swing at someone giving him some lip. 

    Rondon makes me nervous.  I just dont think he is ready.  Looks as if the bullpen is going to be a roller coaster ride this year.  Makes me even more anxious about Smyly leaving the pen. 

    I hope they wake up for the Braves.  I am green with envy.  I wish I was closer to Detroit so I could take in a few games a year.  Ive only been to Comerica once (last year v. Minnesota) and it was beautiful.  Most of my memories are from Michigan and Trumbull. 

  15. Understood.

    I just need to get a couple of nights sleep just to get my head above water and start thinking clearly again so that is where my concentration is at the moment.  Then I can worry more about serious busting.  This is all very new to me and I have learned about CH, O2, melatonin, energy drinks, psilocybin, etc all in the last 72 hours or so. 

    I am happy to report that I was finally able to sleep through the night last night and feel much better this morning.  Now I can start to take serious looks at moving my neurologist appt up and checking to see what busting options might be available to me. 

  16. Hey Trace, I haven't researched it, all I can tell ya is I've seen some headbangers happily and encouragingly report good busting results while on an SSRI or Xanax.

    Thats certainly encouraging.  If the melatonin/energy drink/oxygen don't do the trick I will give it a shot. 

  17. [smiley=tekst-toppie.gif]

    Heck yeah!!  I literally LIVE  for Tigers baseball.

    Not too keen on Valverde making his return to the team tonight ...... but we will see.

    We (the fans) successfully booed Brandan Inge off the team 2 years ago .... if Papa Grande doesn't have his poop in a group he will be the next one on our hit list :)

    We could talk Tigers baseball all day.  Ah the Big Potato.  I don't know.  Pitchers are head cases, especially Valverde.  I am not excited that we couldn't find a better option this off season but I don't see why he could return to form this year.  I am confident that Leyland will keep him on a shorter leash this time around which is a good idea but I am optimistic that he will be serviceable this year.   

    I am much more concerned about our 5th starter/long reliever spot.  Porcello just cant seem to catch a break but if they choose to move Smyly up I worry about that long relief position. 

  18. I stopped by the store to pick up melatonin and grabbed a 4 pack of red bull.  I am going to start the melatonin tonight as I  haven't had more than 3 hours sleep for 10 days now.  If I wake up in the middle of the night again I might just turn to the red bull and read for a few hours before work. 

    I will check into other clinics and thanks for the heads up on welding oxygen.  I will check into that as well. 

    The way I understand it SSRIs block the receptors that psilocybin is looking to bond to.  I am not sure if I have access to psilocybin anymore but I will look into those RC seeds as well. 

    Thanks for looking out guys.   

  19. I am happy to be here but sad that I have to be.  I only found out about cluster headaches about 2 weeks ago when I was experiencing the worst headaches in my life and they were happening at the same time each day.  I am a 30 year old man and I have a pretty good tolerance for pain but these attacks are testing my limits. 

    Some research led me here and I am eager to find a way to deal with these things.  Not much has helped yet but I am confident that something here will work for me. 

    I went to an urgent care clinic last week and I dont think the doctor believed me when I told her I thought I was having cluster headaches.  She put me on an ibuprofen regimen and gave me an antibiotic (i think she thinks its a sinus headache) and so far they have had absolutely no effect.  She did schedule me to see a neurologist.  Unfortunately though the soonest they can get me in is a month from now so I am on my own until then.  I was originally intrigued by the idea of using smaller amounts of psilocybin and that is how I found clusterbusters.  I used to use psilocybin recreationally about 5-10 years ago but stopped.  However now I am taking Celexa which is a SSRI and Xanax.  After some more research I am not confident that the SSRI wont block the psilocybin from working.  So I am moving to plan B.  My worst attacks and most troublesome come in the middle of the night between 1:30 and 2:30.  I am going to try to take melatonin tonight for the first time hoping to see some sort of improvement there.  I dont have any access to oxygen right now but once I get into see the neurologist I am going to check with her. 

    I do find a sense of comfort knowing that there are others here that are dealing with the same thing.  Thank you to whoever created and maintains this site.  I will do whatever I can to get the word out about this condition and see if we can come up with a real cure someday.  It is nice to meet you all.

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