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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.

been a while since i was last on and have been thinking about you. So glad to hear of your results.

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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!

Jeeez!!!!!!!!! Some people have NO COMMON SENSE. >:( >:(

Glad to hear from you! :) I have been wondering how you were getting along and what you had found out.

Keep us posted and keep that smile on your face, ok?

All the Best Whooli. I would blow off the diet too. ;D

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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!

Jeeez!!!!!!!!! Some people have NO COMMON SENSE. >:( >:(

Glad to hear from you! :) I have been wondering how you were getting along and what you had found out.

Keep us posted and keep that smile on your face, ok?

All the Best Whooli. I would blow off the diet too. ;D

This reminds me of how when a lady is pregnant, some women will tell them THEIR horror stories about birth. Then at the end add "But I'm sure that won't happen to you!" after terrorizing the first time mom's. Pretty sure this happened to my best friend a LOT.

I understand that people want to share their experiences with some conditions but... I try to be gentle with people who might have something GODAWFUL. LET'S NOT TERRORIZE THE SHIT OUT OF THEM. D:

*hugs for Whooli*

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  • 2 weeks later...

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.

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My sister had an AVM, same area as yours. She used to get very bad headaches. It started to bleed so she had surgery and part of the lobe was removed. She still gets headaches but not as bad as before. Best of luck to you! 

I wish I hadn't read that.

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lynn,

Isn't it sort of like when someone finds out you are going to have a C-section and then they tell you how so and so's C-section went to $hit? Or 'General anesthesia is great unless the anesthesiologist is a junky and already took 50% of your medicine'!

I am glad for her positive outcome, but I understand Whooli's point. He just got diagnosed and is dealing with a lot. He is in THE MIDDLE of this test wise, decision wise, future wise etc. He has a wife. He has been through a lot while getting his Graduate Degree. He is faced with tough decisions while in horrible pain.

To hear that your sister survived 'against the odds' is not encouraging.

peace

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To hear that your sister survived 'against the odds' is not encouraging

How is it not? Her sisters started to bleed, had it removed and shes better now.

Whooligans was found early and has the option to take care of it before it bleeds.

So in context, lynn's sister's condition was worse than whooligans and shes doing okay now.

lynn's sister made it through just fine in worse shape than you. How could you not accept words from someone who's sister went through what your dealing with? You have a chance to be connected with someone that understands what your going through, and after all isn't that what your looking for? since your here looking for some support?

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I most certainly hope that everything turns out well for you and I am definitely going have a talk with my Dr about this.  I am sending many positve thoughts your way and wish you the ULTIMATE BEST!!!!!  Hang in there and remember that we are ALL here for you!!

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I most certainly hope that everything turns out well for you and I am definitely going have a talk with my Dr about this.  I am sending many positve thoughts your way and wish you the ULTIMATE BEST!!!!!  Hang in there and remember that we are ALL here for you!!

Exactly what I was hoping for! Good luck and thanks for the well wishes.

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I'm not much on writing but here it goes.  I have a brainstem AVM. 

Has bled 5 times and three craniotomies have not been able to remove it.  I'm disabled and had to retire at 30 years old but I'm still alive and happy.  Well,  not so much happy when I'm in a cycle.  My AVM has nothing to do with the clusters.  Just be careful about which meds you take.  DO NOT TAKE TRIPTANS OR DYHYDROERGOTAMINE.  I just did the RC seeds last week then blotter acid yesterday and it has ended my cycle it seems.  Scared the hell out of me but I survived.  There are other options and the AVM is just something easy to live with if you make a few minor changes  Mine was first diagnosed/found in 1987 and it can't possibly be in a more difficult place

I'd be happy to talk to you and share my info if you'd like.  Just send me a message and I'll send you my number.  Best of luck to you.  All will be great!

Robert

vaph@comcast.net

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Thank you Robert. I will definitely keep that in mind. I spoke with my doc yesterday and after I mentioned AVM to him We scheduled an MRI.  The deciding factor though was after I told him that for about about a month I was getting severe exertion headaches (especially during intimate times with my wife).  Once he heard that, he immediately said "Lets set one up".  Hope it's nothing but worth a check!  Getting ready to start D3 Reg.  "The Beast will NOT win!!!

"

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Robert, so sorry to hear about your AVM. Wha a terrible spot for it (not that there is a good spot). Thanks for the info. I'm holding out hope the avm is what's causing my headaches, since I can feel the avm in my head. I'll definitely talk to my doc about those meds though.

Brad, good luck! As much as you want answers, I hope your MRI comes back squeaky clean.

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The loving surgeons (who repeatedly checked their iphones impatiently during our post-op consult), said they were going to set it up for us. As we were leaving the hospital, my wife and I already knew that wasnt going to happen. So we are waiting for my family doc to come back from vacation to get her to make the appointment for us.

The specialists could care less about my pain or how it has affected every aspect of my life. To be fair, their job is avm removal, not pain management. It was a pretty bad feeling though to have my life just shrugged off like that, but luckily my wife is a higher up in our local medical community and the docs here absolutely love her, so I get treated with 100% urgency. I feel horrible for other people who have no one on the inside and are forced to rely entirely on the system. What a powerless feeling that must be.

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Whooli

I feel horrible for other people who have no one on the inside and are forced to rely entirely on the system. What a powerless feeling that must be.

You are very fortunate for that connection! 8-) It is a very powerless feeling. Like they don't care if you live or die as long as you don't die on their watch.

Just to let you know, I have had all the tests- MRI MRA CT of my head. Sucks when they draw blood for a test in the ER and then cruise off saying nothing. Then when you trap someone in the hall and ask they inform you (after giving you a muscle relaxant for a 24 hr CH) it will be an hour for the results. I went home. >:( Thank the powers that be for O2 and alt. medicine. 8-)

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  • 1 month later...
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  • 3 weeks later...

Well, the results for the MRI came back clean as a whistle!  Now its back to the original question "where does the beast come from, and WHY!!!"  I am up to about 2 HDs a day, including the middle of the night rude awakenings.  I get about 500 dollars worth of sumatriptin shots for about 8 dollars with insurance (thankfully).  Now that the MRI is out of the way I will start the D3 regimen. PF Wishes everyone!

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the results for the MRI came back clean as a whistle! 

WHA??!! WOW that is incredible :o, although it's understandable if you're not in a 100% partying mood since you're still getting slammed with the CH.

I get about 500 dollars worth of sumatriptin shots for about 8 dollars with insurance

That's some unusually good insurance! OK this is the second time I've posted the link in the past 5 minutes about extending your imitrex, but hey I'm a broken record:

http://www.clusterheadaches.com/imitrex.html

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