Long time survivor- needs support!

Hey all,
I had my AVM removed 16 years ago. I still live everyday with things like no peripheral vision, and some memory problems, but I live a pretty normal life. The thing that's always been tough is anxiety and mood swings, especially in times of great change. I'm kind of in this funk right now where I'm not sleeping and just anxious. I'm so annoyed with everyone telling me to go to doctors. Aside from the fact that I have no health insurance, doctors tend to prescribe drugs and send you out the door. I feel like my AVM was such a long time ago, and while I'm lucky to lead a pretty normal life, but sometimes I still feel like the effects are always lingering over me. I could use some advice to get through this!

I am sorry that you are having trouble sleeping. Lots of folks have trouble sleeping at some point in their lives. Sleep clinics are big business. I know of 3 here in Memphis and they are open 7 nights a week testing people.
I only have a couple of suggestions. If you can afford it…try massage therapy or acupuncture. Limit caffeine…diet drinks (aspartame) and alcohol.
There are a lot of wonderful sleep relaxation videos on YouTube. Then turn off the computer and try mediation.
I am a 25 year AVM survivor so I understand your comment about some lingering effects!

Also, look up blue light and its effects on circadian rhythms. Blue lights should be on in the morning, and off in the afternoon/evening. They help let your brain know when it is time to be alert and awake, and when it is time to sleep.

Hi aruski,

In addition to what Barbara has said, let me add: . . . To help you sleep, you could try melatonin. it's an over the counter med and it doesn't knock you out like some sleeping pills do. It just helps you to relax and feel tired enough to go to sleep.

The anxiety is a tough one - I have that too. I play easy listening music a lot in my house (as background music). Usually it's a nature sound with a soft melody to it. I have a good collection but, that's the one I like the most. Anyway, that helps me to be calm and relax. If you like piano, then I would suggest Yanni. I'm also partial to Seven Halpern. He works a lot with specific tones that aid in bringing the body, mind and soul into balance. I reccomend Inner Peace for relaxation purposes. You may be able to google it and listen to some of it and see if you like it or not.


Melatonin is not risk-free: http://www.mayoclinic.com/health/melatonin-side-effects/AN01717

As always, consult a doctor before trying an herbal supplement.

Hi, I am about 20yrs plus post avm surgery. Am not having a good day today. The lingering effects are a real pain. I now have a support worker which I feel conflicted about as I 'managed' for 20 odd years without one. However what happened happened. Sorry, not feeling that positive today! Have you got any soothing pets? Treat yourself to a massage or similar.

Hi Flower,
It must be the the weather... I'm only saying that because I'm not having a good day either. I think we should go for ice-cream (smiles).
I've been trying to get myself outside to fix a broken window. I got the new window pane this morning but, I forgot to get some ambition. I just now took a double dose of my pain meds so I get my work done. As soon as that kicks in, I'm headed outside to do my "manly duties" (hee hee). I might have a little buzz on but, at least I'll be able to get it done. And,... with a smile on my face too (laughing).

* A nice long hot bath is good too. Either put some epsom salts in it or any other kind of bath stuff you may have. Oh!. . . and light some candles with some soft music in the bathroom too. If you are going to treat yourself, you might as well do it right (wink).

For those of you who may be skeptical of this (the deep breathing). I can tell you from experience - It does work. I even have my 3 yr. old god-daughter do it when she gets upset or mad about something and she calms right down. It's not a complete calm as if nothing has happened but, it calms her enough that she will listen to reason.

Is what I do for myself is - I imagine whatever is bothering me to leave out my breath as I exhale. I inhale the good, hold it for 4 or 5 seconds, and exhale the bad. It works.

Your welcome Ninibeth. When all else fails - eat some chocolate..LOl I say that in jest but, there truly is something in chocolate that release the 'happy hormones'. <- For lack of better wording because I can't remember what it's called right now (smiles). It releases something(?) that puts us in a better mood...ha ha

great, the future is so wonderful to look forward to. Ive been avm free for 6 yrs and while the avm is gone i am living everyday with multiple disorders. I feel like the only thing to do is just say F*CK IT and just live

Hi...It seems that having brain damage from an AVM causes these issues with many of us. I also cannot afford to go to see a doctor and most of them don't understand what it's like to have an AVM brain injury regardless. So, for me, it's a waste of money to see them.

All I can say is that keep busy when you have the anxiety and mood swings, try not to think about it by keeping as busy as you can. Walking helps. Listen to a cd on meditation. I listen to books on cd (as reading is a result of my brain bleed)so that I can think about something else. It also works when I can't sleep.

Hang in there! We are here for you!

Hey Long Time aruski22 ... I'm basically not writing to provide you any type of support, but for us to lean on each other and maybe compare notes with you on survival methods. I too had an AVM removed, but it was almost 28 years ago. I had my daughter the evening of December 3, 1986. The morning of the 4th, I was on the phone discussing something with a former sister n law. The next thing I knew I was in ICU headed toward CAT scans, MRI's, etc. I had no idea what had happened. That was it... just the one. (Or so I thought.) 5 months post delivery, I was sent to the Mayo Clinic, since this type of situation had not been researched more than 15 years at that time. The Neurologists told me they all felt it was something that grew over a course of just a few years, not that it was something you were born with. So, for years, that is exactly what I thought. Fast forward to today, or 28 years later. I've recently found that over the past 3 years or so, I am again having Seizures. When I went to the Mayo, I was given the best of the best in this type of surgery - Dr. Thor Sundt. Anyway, I'm not having them daily, or in any type of pattern, but they have caused me to stop drivving. My neurologist has now put me on 9 100gm tegretol daily, plus 1000 mg of Keppra, and just added 1mg Ativan. Talk about feeling drugged out! I'm ready to throw away all of the medicine!
Anyway, this is my long story short. I can't figure out why after all these years the seizures have come back. Hopefully, answers will come fast. Whatever type of support I can lend to you I'd be more than willing to do. We are in this together.

Dear friend,
You've made it this far, don't give up now! Remember how tough it was 15 1/2 years ago? Well, you're the same person, inside, that you were then. Only you're smarter now.
As far as doctors go, that's pretty much what they're there for: prescribing drugs, unless you need surgery or a bone set, or something. But, in my opinion, drugs are an ugly necessity, sometimes. No one wants to take them, but sometimes you gotta. And there are some really great ones out there right now. For instance, I had a little problem with depression, years back that was so bad I tried to kill myself. My doctor suggested I take an anti-depressant and, after just a week on the drug, my mood had changed dramatically. And I know it was the drug because a couple of years later, I thought my life had stabilized such that I didn't need the drug, so, with my doctor's blessing I weaned myself off. And for a while I did fine. But, then, I moved and everything changed, plunging me into depression, again, and I had to quickly find a psychotherapist who could prescribe.
Well, I got through that and found happier times. But I still take an anti-depressant. Along with balancing behavior, like going to church weekly, not listening to depressing music, keeping a journal, and talking to friends regularly, the drug keeps my head on straight. I know I can't do it by myself because I've tried it. But I'm not ashamed to need a little chemical help. I had my AVM zapped 24 years ago. It was a loooooong time ago. They were just starting the treatment of AVMs, didn't know a lot about it, and it hurt like HELL! Even the memories of it hurt. So I deserve a little chemical help. Hell, I deserve an oxycodone drip!
Good luck in finding your way. -Janine