Whooligun Posted September 27, 2013 Share Posted September 27, 2013 Its been a long time. The last time I was here, I had just found out about my AVM. Since then I underwent Gamma Knife treatment, and have had my 6 month MRI, which showed that the AVM has shrunk by 40% already! Very happy news, but my headaches are worse. Its been about 4 years steady now. Used to be once a year, but now they are constant. I have done everything my numerous docs & neurologists have recommended & prescribed, but tonight I finally try the fungi. I found a good steady supply of numerous strains, so I plan on giving this a serious attempt. I'll post my experiences here, in case it helps anyone out, and to anyone that remembers me, hi! haha Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 27, 2013 Share Posted September 27, 2013 I remember ya Whooligun! Thank gawsh about the AVM shrinkage! [smiley=thumbup.gif] But wait a minute...that sux'n bloze about the CH. I bet you'll knock the CH down and quite possibly even knock it out with the fungi. Pullin' for ya. Several headbangers around here who benefit from fungi have been keeping a tranquilizer such as a valium or xanax on hand just in case of any trip induced anxieties. Quote Link to comment Share on other sites More sharing options...
b.g. Posted September 28, 2013 Share Posted September 28, 2013 welcome back Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 28, 2013 Share Posted September 28, 2013 Hoping for the best for you, Whooli. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 28, 2013 Share Posted September 28, 2013 Great to see you post again Whooli! Very glad to hear your treatment is in progress and AVM is shrinking! Last update I had was that you were in 'wait' mode. Now the update on the clusters was not such welcome news. So sorry the going is so rough right now. :'( All the best in your efforts to KO the beast! Stay in touch! spiny Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 28, 2013 Share Posted September 28, 2013 What spiny and everyone else said! Sorry the headaches are constant. I understand fully I hate to say. Best positive wishes on the fungi taking the pain away. Don't give up, it took me five doses to get long term complete remission several years ago. What a wonderful feeling to be pain free or at least to feel like o I have it under control. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted September 30, 2013 Author Share Posted September 30, 2013 Thanks everyone. Was not sure how much to take, so I started with a gram. Felt nothing after 45 mins, so the wife & I walked the dog for a 1/2 hr. Felt nothing, but the second we hit the driveway and I stopped walking, everything else kept moving haha. I felt like my whole body was broadcasting at 1000%. We watched the 1st Indiana Jones, then Jaws. Movies were crazy weird, but I was happy for the distraction. Even though some parts were fun, I prefer not to be so far out of my own brain. Anyways, I slept well that night. Next day I felt clear as a bell, but still ended up taking my usual doses of meds due to the constant headaches. I did have some ultra clear moments however and felt incredible for the first time in a long time. Headaches like usual yesterday, but today, so far, no pain meds. Feeling good. Im assuming it will take more than one dose, so I was wondering how often you guys think I will need to medicate for it to effectively kill the headaches, and also how often do people take them to keep them at bay? Thanks again! Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted September 30, 2013 Share Posted September 30, 2013 I slept well that night. Next day I felt clear as a bell, [highlight]but still ended up taking my usual doses of meds due to the constant headaches[/highlight]. I did have some ultra clear moments however and felt incredible for the first time in a long time. Headaches like usual yesterday, but today, so far, no pain meds. Feeling good. Im assuming it will take more than one dose, so I was wondering how often you guys think I will need to medicate for it to effectively kill the headaches, and also how often do people take them to keep them at bay? Thanks again! Yes usually 3 doses (maybe more) every 5 days. It looks to me like it is working. However you must keep in mind the detox thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 And the every 5 day thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968 Edit: The usual dose is 1.5 to 2.0 grams. And chillin out in a recliner to music (pink floyd is my favorite) is much better for a good "trip" than TV, especially for the larger doses. The more you take, the more important it is to minimize interuptions/distractions and do nothing that requires brainpower. Just my 2 cents. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted September 30, 2013 Author Share Posted September 30, 2013 Yes usually 3 doses (maybe more) every 5 days. It looks to me like it is working. However you must keep in mind the detox thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 And the every 5 day thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968 Edit: The usual dose is 1.5 to 2.0 grams. And chillin out in a recliner to music (pink floyd is my favorite) is much better for a good "trip" than TV, especially for the larger doses. The more you take, the more important it is to minimize interuptions/distractions and do nothing that requires brainpower. Just my 2 cents. Thanks for the great info & advice. Ive been avoiding triptans anyways because of the AVM, but they didnt really work anyways. There is no way in hell I could be without any pain meds for 5 days though. Ive been battling this cluster for 4 years. I havent had a pain free day once. I will try again with the fungi, but will make a major attempt to limit my meds before so. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 30, 2013 Share Posted September 30, 2013 Looks like you got some med free time Whooli and that is great!!!! You just do the best you can since those meds can limit or eliminate your benefit. Read the links. I am soooooooooo glad you did get some benefit! My understanding is that this treatment can help with other stuff like PTSD too. [smiley=tekst-toppie.gif] Having a clear head must feel wonderful. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted September 30, 2013 Share Posted September 30, 2013 Thanks for the update and welcome back Busting did not work on me while on medications, several of them, I was chronic back then. Very important stuff what diamondmaker posted. My clusters actually eased a bit when I got rid of the medications. One of the hardest things I have done in this life. After that, busting took care of my clusters. Pain free for over 3 years. Never going back. Wishing you all the best ! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 2, 2013 Share Posted October 2, 2013 Diamond maker is spot on. I've never really figured that out, but less is way better than stimuli My trip panda puts on hours worth of pink Floyd, moody blues, and even jethro Tull. I never was a Tull fan, but WOW... My buddy says " close your eyes and open your ears. Time seems to fly by....Which is what I want anyway. Dan Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted October 2, 2013 Share Posted October 2, 2013 Dan...just curious. Can you take a dosage/pill etc and go to sleep and skip the trip? Sleep it off instead? Quote Link to comment Share on other sites More sharing options...
Whooligun Posted October 5, 2013 Author Share Posted October 5, 2013 Gonna have to ween off my regular meds and try again. Our first baby is due in 10 days, so I'm gonna try ASAP before the big day! I'll load up the iPod and leave out the movies this time. Tull will be on there I actually saw them play at the Fox theatre in Detroit. Very fond memories. Any suggestions for the crazy gut rot? Quote Link to comment Share on other sites More sharing options...
Whooligun Posted October 5, 2013 Author Share Posted October 5, 2013 And by the way...thanks Dan. Watching your story convinced my wife and I that this was what I needed to do. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 10, 2013 Share Posted October 10, 2013 Thanks for the thanks. NO WAY CAN I SLEEP THROUGH THE JOURNEY I sure wish I could. Maybe a super sedative but that would probably interfere with the " program" I would like to take my meds and have Michael Jackson's doctor sedate me. I would like to wake up though Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted October 11, 2013 Share Posted October 11, 2013 I have the most admiration and respect for you. And one day hopefully in my lifetime BOL will become a pharmasuticle I will try it. I love your humar btw.... My son watched your video for the first time last week. Your daughter and my boy...they are alike as a child of a survivor... My son said..."dad your not going to are you?" I said no son. He said ok then.... He got sad watching you as well. My door is always open if your ever north of the border. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted October 12, 2013 Author Share Posted October 12, 2013 Wife is due any day, so Im gonna give it a couple months before I try the 5 day busting. I would hate to be out of my mind in the delivery room! Can you imagine a worse scenario for a guy on shrooms? haha Where in ON Cluster? SSM here. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 13, 2013 Share Posted October 13, 2013 If I'm ever north of the border, I would very much enjoy meeting you CHS. My buddy Doug lives in your country, as well as Whooligan too. I would love to visit Canada and it is on my bucket list Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 13, 2013 Share Posted October 13, 2013 I would hate to be out of my mind in the delivery room! Can you imagine a worse scenario for a guy on shrooms? haha NO, I can not. Quote Link to comment Share on other sites More sharing options...
Whooligun Posted December 6, 2013 Author Share Posted December 6, 2013 Baby is here, 7 weeks old. Life is great, she's healthy and beautiful. Want to start busting soon and have been weening myself off codeine contin & percocets to prepare for 5 days med free before I bust. The problem is, Ive had 2 pain free days in a row for the first time in 4 years. Sounds nice, but I am going thru withdrawls for the first time ever and they are terrible. Feels like the flu: wicked diarrhea, zero energy, restless legs, can't sleep. I feel awful. I have taken a couple perks just to feel better, but this is a brand new realization for me. I have a major battle ahead of me. Anyone have some good methods of helping the withdrawl period??? I read about loading up on immodium, so thats my first step. Quote Link to comment Share on other sites More sharing options...
spiny Posted December 7, 2013 Share Posted December 7, 2013 Hi Whooli!! Congratulations on your daughter!!!! Since docs here will no longer prescribe Quinine for restless legs, I drink Tonic Water. Two glasses in the evening. It really helps, as does walking. If it gets bad, I also do stretching exercises like up on toes and pull toes to nose things to stretch the calf muscles. It helps me as does a massage with lotion or oil. The rest, I don't know. But since pain meds can be constipating, the diarrhea would seem normal. Perhaps backing off on veggies (especially corn) could help. Some people find cheese constipating, so eating hard cheese might help too. Sorry you are having a rough withdrawal, but you will be so glad to be free of that stuff!!!! Bet your head will appreciate it too. All the best! spiny Quote Link to comment Share on other sites More sharing options...
Purple Posted December 7, 2013 Share Posted December 7, 2013 Hi Whooligun, congrats for baby!! I had missed you back, so Welcome Back. I bet the fungus could help with withdrawal ?? I don't know, I'm actually throwing this question in the discussion Quote Link to comment Share on other sites More sharing options...
Whooligun Posted December 7, 2013 Author Share Posted December 7, 2013 Thanks again...a bit better today until an hour ago...started getting the shakes. Man...I feel terrible...I cant believe my life got to this point Started seeing a shrink too...he thinks chronic pain leads to depression/anxiety, which makes the pain worse, which makes the depression/anxiety worse, etc Im tired of being high from painkillers, being in a daze and not being myself. I havent been myself in a while. Doing whatever it takes to find myself again for my little girl. I want to be a great dad. Sorry for the cheese haha. It just feels good to get it out sometime! Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 7, 2013 Share Posted December 7, 2013 Doing whatever it takes to find myself again for my little girl. I want to be a great dad. I have no doubt at all that you will be. Quote Link to comment Share on other sites More sharing options...
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