Whooligun

Thanks Spiny.

I wish I hadn't read that.

Had my angiogram (which sucked big time). Even though the AVM is exactly where my CH are all the time, the docs wont say its the cause. The AVM is stable, whcih is good, but the risk of bleeding is there, and it increases as I get older. I could ignore it, live with the excruciating pain and hope it doesnt bleed, or I could try to get rid of it. Due to its location however (left frontal lobe), surgery is very risky. 2 of the 3 options involve risky procedures , but the third sounds somewhat promising. The cyber knife is the least invasive, but we have to wait for a consult to determine if that will indeed be helpful. So while I wait, I pop more and more pain meds, hope the docs hurry up, and hope Im not destroying my liver with all these narcotics. Im not much of a pot smoker, but I just got my hands on some to see if that will work with my meds to lighten the load on my insides. Pain wise, I feel like shit, but Im happy there may be an option available to me, and happy that we found the cause of headaches after 20 years. Even if the docs wont admit it, its way too coincidental for them to not be related. Even during the angiogram, when the dye was flowing right through the AVM area, I could feel it, and it felt like one of my monster headaches. It was the same pain, in the same spot. Hopefully getting rid of that thing will get rid of the pain. Now...hopefully whoever reads this will rule out an AVM of their own! Bring it up with your doc! You dont want to find out you have one after it bleeds...it would be too late.

Its been a while so I thought I'd throw out an update. Going to Toronto in a couple weeks for an angiogram (cant wait) and then a consult later in the day with the specialist, to find out the next step. Headaches have been constant. Upped the pain killers now I have no idea if its the headaches or rebounds from the pills. Either way, Im hoping both will be over with soon. Im staying positive, not worrying too much about what they are going to tell me. And Ive been trying to ignore the complete moron who felt he had to tell me about his Dad who had an AVM and they gave him a 15% chance to survive. Gee thanks for telling me that. He then proceeded to tell me that his Dad is totally fine, except he cant blink and one side of his face droops. But you can hardly tell! Lol. Thanks buddy. Made my day hearing that one. I hope everyone is having a great Summer and that the crazy weather isnt causing too much havoc with the CHs.

Weather sensitive as well. Unfortunately for me, I live smack dab in the middle of the great lakes, where storm fronts and lake effect like to combine for exciting new weather patterns daily. Ive been recently diagnosed with an AVM. I dont know if that means anything or not, but if you havent had an MRI, ask your doc about it, stat.

Have you had an MRI to rule out anything physical, such as an AVM? I thought I was chronic, and no matter what I tried the headaches persisted. It turns out I have an AVM, which is probably the culprit behind 20 years of HA. I dont mean to scare you or anything, but if you havent had an MRI you should get one ASAP.

My brain is not bleeding! Yay! Talked to the neuro who told me "not to baby it" and "don't lose any sleep over it". It hasnt bled in 36 years, so its not like its gonna bleed overnight. Waiting for an appointment in Toronto to have some more tests and a consult with a specialist team, but Im not staring down the reaper like I thought I was. What a terrible feeling! I will still be facing lots of fun tests, possible radiation, and still possible brain surgery, but I feel a lot better today. Thanks again for the kind words and messages. Some of you folks are pretty awesome people.

Thanks...you guys are great. Talking about it always helps, especially when you guys seem generally interested. I appreciate that a lot. I havent told my family yet, so again...thanks. Anyways...no word yet. Still waiting on the neuro's report. My family doc is great though and is on it. I almost made her cry when I broke down in front of her yesterday. I had some tough questions to ask, and the words did not want to come out. With situations like these, you have to hope for the best and plan for the worst. My wife and I are young, so I just want to make sure she's not left behind with a big mess of things. Anyways. It sounds like Im depressed, but Im not. Im actually pretty confident. I feel good, have been taking extra pain meds because I can, said F.U. to my diet because I can (not overweight, was just brought up with a lot of bad eating habits), and am looking forward to having no headaches for the first time in 2 years when this is all said and done. 8-)

Interesting reading.

Thanks...MRA was much better than the MRI. I didnt take any meds for the MRI, because I wanted everything to show up. I get ultra sound & light sensitive during an attack, and the MRI machine was the loudest thing I have ever heard...for 25 minutes I was in pure agony. Hell I tell you! lol. Anyways, the MRA was quieter & shorter. I should get the results Tuesday.

Yes...Ive had 3 CAT scans, never an MRI. Apparently the AVM doesn't show up in the CATs.

Im 36. Have had headaches for 20 years. Its amazing 3 neuros have missed the AVM. Maybe we can spread the word about these things on here and CH.com. Im sure there is at least one other person out there who's nasty little AVM is causing their headaches. Most of the time AVMs arent caught until its too late.

Thank god my wife is so great. We are already laughing about things. Shea sked me to take the dog for a walk and I told her I cant because I have an AVM. That has been our running joke for the last day or so, and I will be sure to keep using that to lighten the mood at a party we've had planned for a long time this weekend. I decided to share with everyone now, so there are no secrets, but humour cures all, which is what I need right now. Thanks again for the support, and if you havent ruled out an AVM, please do...Ive lasted through 20 years of CH, 3 neuros, CAT scans, numerous pills, drugs, therapies, acupuncture, sleep study, diet changes, etc, etc, you all know the drill. I was shocked that the MRI showed something at all. I was doubly shocked that none of the "experts" thought of this anytime sooner. Ive been chronic for almost 2 years now, and I think its because the AVM is spreading. Please talk to your doc and rule this out for yourselves. Most AVMs are found after its too late and they hemorrhage.

Thanks again. Have an MRA tonight. The doc talked to the neuro who works with colleagues nearby in a special AVM clinic right in the hospital. I think its the definitive centre of AVM in Canada, and my neuro knows the docs, so that is good. The fact that they want a second test 2 days after, leads me to believe I'll be flying to Toronto sooner rather than later.

Thanks for the kind words everyone. I havent spoke with my doc yet, but I already have an appointment for an MRA tomorrow. The fact that that I just found out yesterday, and have another test worries me. It must be pretty serious. Ive been trying to do research, but I find myself getting sick to my stomach when I see things. I havent told my family or friends yet. My brother is leaving for his honeymoon in 2 days, I dont want him to be distracted. Its crazy...my family was always 100% healthy, we never had any issues to deal with...just a happy family. Then out of the blue my mother died in her sleep, 3 years later my 40 yr old sister got cancer and died within 6 months, leaving behind 4 young kids. Im super close with my Dad, and I dont know how the hell he would take this. The hard part isnt the pain, or fear of death, its thinking about how everyone else i would leave behind would have to cope. This sucks. Thanks for listening. Time to be strong again.

Just got my MRI results back and it appears that I have an AVM. I had to stop reading about it, because I'm getting pretty freaked out. I just thought I'd share...maybe other chronics like me out there should have MRIs done. I'll post more another time when I'm not so bummed out.

Just ordered Scooby Snax Each tablet contains: • 0.6g Magic Mushrooms • Korean Red Ginseng Powder • Mua Huang • Ginko Biloba • Organic Peony Root I'll let you know.

Not one person here keeps a journal? I wonder if I should even bother.

Im closing in on a year and a half after 2 month clusters all my life. Mine got worse after I moved North 400 miles. Mine are greatly affected by weather, and I live smack dab in the middle of the great lakes, so the weather is always changing. I fear I may have to move to Arizona or something

Tried it last week, some trouble sleeping, slightly moody, but no help at all for my year long cluster. As long it gets rid of the cluster for you, I would tough it out for the duration. Good luck!

I tried when I was younger, just found I would keep forgetting to add stuff to it. Do you people keep journals? Are they helpful? What do you have in there? If you haven't watched "Man On Wire", watch it. Great documentary! Highest all time rated movie on Rotten Tomatoes.

Thanks...I would definitely not pick my own unless I had an expert guide with me. Which is exactly what Im looking for.

My wife has a very good job, and I'm worried bout growing my own and getting caught. I know the risk is low, but I'm not prepared o risk her career. I know they grow naturally around here. I just need a guide to show me which ones are safe. Before I spend all kinds of $ on equipment and spires, I want to try them to make sure they work for me. I just don't want o buy and old shrooms from some random dealer. Damn government. Why can't I legally ingest something that grows naturally in my own backyard? Ridiculous.

I think fungus will be my next step. I know it grows wild here, just wish I could hire someone to let me know what to pick!

Dosed every 5 days for 8-9 weeks.