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AVM Survivors Network

Can Your Head Do This?

Well, this isn’t new but it certainly isn’t fun. Let me lay out the scenario for you…

19 year old son - dropped him off for his second semester of college on Monday. Knew he didn’t do well, but thought he at least still passed.

Uh, no. And he got an e-mail about not being invited back for second semester before Christmas. Makes for a nice quiet, calm day.

Tuesday - he’s trying to adjust to being at home and failing at it, stress levels were high.

Wednesday - 4 month check up with the infectious disease doc and the laryngologist at U of M. 11 hour day. Good news - it’s not getting worse and the infection appears to be still under control. The not so good news - it’s not getting any better.

Today - woke up expecting my “hangover without the beer” headache. Had some of that but not major. About 3 hours after I got up, headache jumped up a couple of points and it felt like my entire head would vibrate with every word I said and most of what I heard. There is nothing that has changed in the last couple of hours in terms of my location, my noise levels or anything.

What in the heck would cause that and what do I do about it?

I’m sure I’ve missed some details because the brain isn’t firing on all cylinders right now…

TJ

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Hey TJ, I’m sitting here in a hotel listening to a snoring 14 year old deciding if I wake him up now or give him a few more minutes before heading off to the rink. We’re at a hockey tournament. I coach the team, the snoring eating machine is my son. Great kid, a little bad luck thinking from time to time!

I’ve done a lot of sports, and fortunately still do a lot post beed and gamma knife. I always pay a great deal of attention to your posts and know how thorough you are. I apologize if I’m throwing something out that is so simplistic it might not even be reasonable. Have you monitored your hydration and determined if there is any correlation to increasing levels of pain?

I have found that since I “bumped my head” I have become super sensitive to decrease in hydration. I have started to use electrolytes regularly, and drink a lot of water in the run of a day. If I don’t maintain this the headache shows up and gets progressively worse, and it is difficult to get out in front of again.

It may be worth looking at examining a little as it might help some. I hate to see no change as time passes and this struck me as something that might take no change to a wee little bit better, which is still better! Take Care, John.

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John,
If you could see me, I’d be tipping my hat in your direction. Typically, in the summer when it’s hot and humid, dehydration is an issue for me because I’d be doing yard work for a bit and sweating up a storm.

I have not tried to monitor that now, now in the winter and when I’m not nearly as active. But I will start figuring out how to measure and track it and I’ll follow up and let you all know.

Thank you!

TJ

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I’ve been getting regular headaches since my Surgery last January, and they definitely get worse when I’m dehydrated.

I haven’t been following your posts, so forgive me if this is something you’ve had experience with but;
Have you ever been put on a Beta Blocker like propranolol? I’ve found that it’s made a huge improvement in my daily headaches which mostly start in the afternoon and last until I go to sleep. My general practitioner at Mayo had me try that for my headaches/migraines after trying nortriptyline (which was stopped after it started giving me heart palpitations).

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D…

Me and Propranolol are good friends (besides for the fact that I can’t spell the name). No, with all seriousness, in large part I owe a good chunk of my sanity to Propranolol. It has not totallly gotten rid of my headaches but it has not gotten rid of my headaches but it has gotten them to the point of my quality of life isn’t impacted nearly like it was.

I believe we are going to find that for me, propranolol and cymbalta is going to be the good mix. I’m currently at 160 mg on the propranolol and once the amitryptiline is gone (currently down to 40 from 150) then well increase the cymbalta from 60 to 120. As we all know, what I just described in one sentence could take 4 to 6 months to do yet.

As Dory says in “Finding Nemo,” “Just keep swimming, just keep swimming.”

TJ

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God Bless you, TJ, & your son! Prayers for your whole family, too.

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