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AVM Survivors Network

Christmas Thoughts

Hey all,

Merry Christmas! The festivities at TJ’s house have pretty much wrapped up for the day and while I’m trying to get a bit of a break from some of the noise, I thought it’s been a while since I’ve been in touch…

In random order…

  • Cold weather - I don’t know if any of you have the same issues I do, but cold weather brings with it colds and all sorts of bugs that can get in. When you’re dealing with lung issues or throat issues or headaches (or an assortment of those), it is not fun to catch something that makes those worse. #voiceofexperience

  • Hearing loss is much more isolating than many other senses. I can sit at a noisy Christmas party and enjoy it by mainly observing if my voice isn’t working, but it’s a lot harder to do that if I can’t hear. So if you know someone who has hearing issues, give them some extra grace this time of year.

  • Hearing too much can be a problem too. Apparently a common side effect after TBI’s (traumatic brain injuries) and ABI’s (acquired brain injuries) is extreme sensitivity to loud noises. That creates a whole different set of challenges.

Next month will be the 2 year anniversary of the brain surgery that left me with this mess. And I’m happy to say that for the first time since probably May of 2018, I’m actually making a little progress. Yay!

How? It’s a little complicated (isn’t everything?). Working with my neurologist (the headache doc), we are currently on our fourth different headache med and it was getting to the point where, for maybe aa few hours a couple of days a week, I’d say, “You know, my head isn’t so bad.” But in reality that only means it came down to a 2 on the pain level rather than a 3 or a 4.

At the same time, I was working with my psychiatrist (don’t ask me how many meds I’ve tried in the last 2 years - my daughter the pharmacy tech - says I rank up there for people my age. LOL. Anyway, we are trying to find the right combination of anti-depressants and anti-anxiety meds. As we all know, dealing with an AVM can cause need of those. The third anti-depressant we got to was Cymbalta. I started at 30 mg for 2 weeks (no real change) and then went up to 60 mg. It was about a month into that that I started seeing some differences. What was I seeing? Basically, if my headaches went up and down on a graph floating between a 2 and a 7, now it is more of a 2 or 3 to a 5 most of the time, occasionally going up to 7. A huge improvement? Nope, not a huge improvement, but a small one.

The other good thing that I’ve learned from the trial and error is to always keep trying and asking questions. What if I did this? What if we took that? You need to ask hard questions and read detailed reports. I never thought I would find myself reading medical reports from the National Institutes of Health on the side effects reported in a 10 year double blind study of Amovig. True enough.

It’s been a long process, but I’m finally feeling like I’m able to look forward. Forward to a future that was way different on Christmas Day in 2017, but forward in a way that makes a difference.

And on that note, I have spent the last 45 minutes in my “office” and my headache is more manageable, so time to go join the family again.

A saying to leave you with (from my neuro headache guy that he learned from his professor in med school…“Better is always better, even if it’s not good.”

Until later, Merry Christmas to all and to all a good night!

TJ

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A happy Boxing day to you TJ! We had Christmas dinner yesterday with my sister in law and family, husband and three adult kids. My wife, our 14 and 15 year old and myself. 23 lb turkey…while many big appetites add mashed potatoes, yams, stuffing, carrots, three salads and I see turkey sandwiches, hot turkey sandwiches, turkey this, that and the other thing followed by soup.

We have a rural property, the far my wife grew up on that we bought in 2003. While we don’t spend much time here we keep the old house in decent shape and habitable. I was fortunate enough to be the main cook, and be able to break away from the great company for some solitude from time to time. Then to wash dishes, a break from the commotion. These intermittent " breaks" were needed. I enjoyed the company much more after the moments away.

I always read your posts with interest and find you have a great perspective, and introspective. I love the saying, and am hoping for better for all of us! Better sign off, taking the youngest skiing for the day…or at least dropping him off at the hill for the day, I do enough things that I should wear a helmet for! Take Care, and the best to y and family, John.

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TJ

What a difference a week makes :frowning: (I’ve read your recent posts in the wrong order).

So… it’s great that at Christmas you were feeling more positive. I hope you continue to feel more positive in the new year!

Lots of love,

Richard

O.M.G!

We managed to persuade my mum to come to Christmas lunch chez nous this year but she threatened that she didn’t want more than one slice of meat, one potato, one piggy in blanket, one carrot, one sprout, etc. My wife is not very good at under-serving so we put everything into serving bowls for each to help themselves. Perhaps not surprisingly, mum ate more than her advertised limits :grin:

But 23lbs!! I don’t think we’d get that in the oven! Still, good food for a long time to come, as you say :rofl:

Lots of love,

Richard

I was actually joking calling it a pterodactyl! I had to take one oven rack out and put the remaining on the lowest level. I didn’t have to revert to the first rule of engineering, “if you get it moving fast enough it will fit!” Take Care, John.