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AVM Survivors Network

I hate this “new normal” life

Hello all! I used to be a pretty active member on here about 3 years ago after I suffered a massive hemorrhagic stroke in October of 2015 from an undiscovered AVM in my right temporal lobe. I found this site to be very helpful, and even more so now after my long break from it… which makes me wonder why I ever went away in the first place. Ever since my bleed I have been suffering terribly with daily headaches and migraines. Living in pain everyday is not for the weak and I’ve lost a lot of “friends” along this journey. I’ve already found so much comfort reading around here again and knowing I’m not alone in this fight of dealing with our “new normal” lives. Everyone in my life just doesn’t understand the struggle of dealing with a brain injury and they’re all tired of hearing about how much pain I’m in and how many medications I’m on, my next procedure date etc. I had such a great life which I feel ended the night of my stoke and now I’m just a chronically sick person, miss “doom and gloom”. The good news in all of this is that the gamma knife radiation I had done over three years ago was successful, and my angiogram two weeks ago showed the AVM is shut down and there is no more blood flow. I still find myself crying tears of joy. so here I am still fighting to find relief everyday somehow because I refuse to believe that this is going to be my life now- living in agonizing pain everyday. But sometimes, like recently, I feel like I have no more fight left in me. And so I’m back… seeking support, from my people, people who truly understand. I recently found a local stroke support group that meets once a month and have found that it helped so far in the two times I attended, I’m hoping that along with becoming active again on this site will help me cope better with this “new normal” life that I’m not very fond of, Sorry for the long rant

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Jeanine,

Good morning! Its lovely to hear from you again! (Some of us are crazy enough still to be here!)

I’m not sure I’m the right person to help you because I’m doing pretty good. I had my embolisation in April 2017, spent a year not being convinced I was quite fixed, but have subsequently persuaded myself to relax back into life and I’m doing fine. So I haven’t been through anything like you have. I’m sorry you’re having such a bad time of it. Its great to know your gamma knife worked, though, and that the issue is perhaps fixed longer term.

If I was to offer anything, I think it would be to encourage you to look upon that great gamma result as an indication that you can relax about the bleed. Maybe (and I’m just clutching at straws here) letting yourself relax about that might take some psychological strain off and that might just let your headaches down half a step. Who knows.

Its nigh on impossible to relax with a headache, so the idea of relaxing is crazy. However, I’m just trying to help, as an outsider who doesn’t really understand.

There are definitely others here who are in the same deep water as you and busy swimming, so I hope they will offer better comradeship and practical thoughts on how to cope.

I do think it is a helpful thing to seek the support of others – finding a stroke support group sounds good and its great to hear from you on here, too.

Very best wishes. Sending you positive vibes…

Richard

It’s really nice to hear from you Jeannine, I wish it was with different news. Its great that gamma knife was successful, it is awesome to be AVM free. The headaches are certain concerning and if consistent since your bleed I would guess unrelated to Gamma Knife. I hate to say what I’m sure you’re tired of hearing, have you spoken to your GP and asked for a referral? Lots of great pain clinic types out there, and also lots of alternative options to try. I believe that we are so different and that there is no set way to deal with these things. I would try some of the alternatives, what works for some of us doesn’t for others. I guess it’s one of those things that makes us, us! For me one biggie is to stay properly hydrated, and I have been using some athletic electrolyte products that I think help. I use Nuun, especially when exercising and found it has helped me greatly. Take Care, John

I’ll second the hydration idea. Definitely important to make sure you’re hydrating properly.

Thank you so much for the response… I always loved your replies and sincerity and it’s so great that you became a moderator! I am hoping that knowing the avm is gone will help my head without all the constant worrying and anxiety. I agree with both responses that hydration is key and my head certainly knows when I’m in need of fluids. I have seen so many doctors and specialists over the last three and a half years and I have seemed to have stumped them all! I have tried what seems like every medication and procedure out there and yet here I am living not only in pain but dealing with all the side effects of the medications… weight gain, stomach ulcers and sleepless nights just to name a few… We apparently can ship men to the moon but I have a headache everyday and no one can help me lol… I do have an appointment coming up next month with a neurosurgeon who specializes in neuro implants for headaches and migraines… so I’m hopeful about that… now that this pesky AVM is outta the way I can seriously start to focus on pain management so I can get some semblance of a life back…

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