How many of you experience anxiety with your AVM?

Apparently, many injuries/conditions evoke anxiety to be displayed in the person; therefore, I was wondering how many of you ('AVMers/CMers/VMers/etc.) experience anxiety with your vascular condition. Additionally, what are you doing for your anxiety that seems to help you (& why if you know)?

(Note: Anxiety is different than depression but is often prescribed an anti-depressant, such as depression may be.)

Thank you, in advance, for your contribution.

1 Like

I suffer from anxiety. It’s not a good time.

Hi Cindy-yes I have terrible anxiety now & never had it before I knew about my AVM-anytime I get a headache or weird sensation I get anxiety. I have it pretty much daily and what I’ve come to do is when I’m starting to feel anxiety setting in just close my eyes and try to clear out my mind until it’s blank and I don’t think of anything-then I just breathe slowly for maybe five minutes and then tell myself I’m ok and to move on. It seems to help for the most part-it’s hard keeping thoughts out of my head though and takes a lot of work! (I was in therapy for a while and that’s one of the techniques I was taught to do when I’m feeling overwhelmed). Meditation seems to help a lot as well.

Hi Cindy, :slight_smile:
After having 4 CM bleeds requiring 4 surgeries, anxiety is ever-present.
I’ve noticed with each surgery, anxiety has become heightened & especially whenever going to healthcare appts. (dr., dentist & even PT). So especially if I’m going to an appt., I’ll take a low-dose of anti-anxiety Rx meds to help take off the edge & do my best to become aware of my breathing, taking deeper, slower breaths.

Hi Cindy,
I think my anxiety is a result of the bleed, not necessarily the AVM iteself. I don’t have acute attacks very often but when I do only Xanax helps. I usually take a Xanax beofore I go into a situation when I know I’m going to have difficulty. For normal, run of the mill anxiety (Ha!) usually deep breaths work. And time.

Cindy, I also have anxiety. As others have said, I have a med that I take when it’s difficult…I have a cd that I run which calms me down…there are several CD’s at that help with anxiety. Breathing also helps…My daughter has learned that walking helps to take her anxiety away. I wish you the best!

Hey Cindy,

Since my bleed, I have started to have anxiety attacks when I’m out in public. No one can tell what’s going on with me, but one got so bad that I came close to passing out. I have even started having them at my house. :frowning: I spoke with the Neurosurgeon yesterday about this, and he felt that a low dose anti-depressant (Lexapro) would help out. I will take my first dose tonight. I pray that it does the trick, and that I don’t have this anxiety anymore.

I pray that you are doing well. Hugs to you!

Hi Cindy, I would be very surprised to hear that someone hasn’t suffered from anxiety after learning about their AVM. I also have had some intense anxieties since being released from the hospital, however, I did seek some PTSD counseling after my bleed and that helped to calm me a bit. I was also taken an Ativan when I would feel an attack coming on, however, haven’t had to do that for months now :))!! I finally accepted the fact that I have an AVM which will someday be gone and I am also still here for a reason so I can’t worry about any of the “what if’s” that may never happen. Life is so full of “what if’s” and if I worried about them all, I’d be a walking basket case! I’m hoping that some of the anxieties you are now dealing with will subside for you with time.


Thank you all for your contribution. It is my opinion that anxiety is heightened during this diagnosis period, no doubt partly due to not much being known by the medical professionals, as well as, having lived with it for X or XX number of years without knowing about it. Personally, I never realized I had any anxiety and then to come to find out, it was a ‘healthy’ level of anxiety; however, my anxiety has ‘increased’ since being diagnosed (too much stress from it and everything, I suppose). Currently, I’ve been refusing to take ANY anti-depressants (I do NOT find anything wrong with anyone taking any meds. for it) because I really can’t ‘just trust’ a physician to prescribe something ‘safe’ (= has seen at least 3 errors in my own first hand experience and have heard of other ‘errors’) but have been considering taking a prescription for it as needed. Was just wondering what others were taking that helped with his/her anxiety.

Hi Cindy,
I was diagnosed with a social anxiety disorder 5 years before my AVM was found, and I’ve been on a daily dosage of anti-depressants for both it and my depression. Finding the AVM certainly increased the anxiety. The best thing I found to do was to see a psychologist weekly, just to get out all the feelings building up inside that I felt I couldn’t share with others. My psychologist and my family were really supportive during the hardest times, and I’m very lucky to have them. A positive outlook is the best possible thing you can have during the hard times! Nothing is ever as bad as your mind believes.

Anxiety. Yes before and after surgery. I have CCM and multiples throughout my brain and brain stem. I just had surgery to remove 3 malformation. One on my temporal lobe and 2 on my frontal lobe. I am 64 and this disease has been in our family going back to the 40’s that we can trace. Two of our three children have it as well and one has already had surgery on her temporal lobe. Anxiety knowing you have it forever and never knowing when it will want your attention can be a challenge. I currently take lorazapam 1 mg as needed. My mother took diazapam 5 mg. It quiet the brain, helps you rest and given you energy to go back at it again. Don’t know that this is for everyone. Reviewed by a NeuroPsychiatric physician Dr. John Barry @ Stanford Medical Center and felt when having brain diseases this is one of the better medication to have as needed…Wishing you luck.

Hi Cindy,

I do alsa feel much anxiety after I knew I have AVM ( I also have an aneurysm ). WHat I do is…I let me cry for some time ( the worse is when I am at work ) and in the meantime I pray for God to take it away from me. I also explain myself anxiety came and will pass by. I feel much anxiety for death. But what to do - I pray, pray and pray…and live. As my son is five I feel huge motivation to live and to be healthy and therefore to get rid of anxiety as well. I also keep repeating " DO NOT GIVE UP, YOU CAN’T" It helps. That helps me. Take care:) And…DON’T GIVE UP, YOU CAN’T :slight_smile:

Hi Cindy :slight_smile: Me too. I take xanax when it gets to bad (as my last resort). I try not to ‘overload’ my brain to much too. Is what I mean is, I focus on doing one thing at a time… I can’t multi-task any more. It’s to much stimulouse for me (most of the time). It really stinks… I never was like this before. I also meditate for a few minutes through out the day. Another thing I discovered is, I take meletonin to help me sleep and that helps me to remain calm during the day. A nice little side effect, wouldn’t you say? :slight_smile: I watch my caffeine intake too.

I like what marcylynn said, it works! A few deep breaths, done slowly. With the thought of inhaling the ‘good’ and exhaling the ‘bad’ works really well for calming ourselves down and letting go of the stress. When you inhale, you breath in all the way down to your belly. Take your time at it. It’s done in a slow and peacefull way. I’ll give you a private lesson if you’ll bake me some of your cookies. LOL


Cindy, Hope this email finds you doing better knowing that anxiety has knocked on most of our doors. It is understandable, but proper care and good healthy living helps. Hopefully you’ve talked to your physician about anti-anxiety medication to have on hand. Getting 8 hrs of good sleep each day and good nutrition and walking helps relieve the stress and worry. Easier said then done. I wish you patience, and joyful thoughts to live life and not let life live you. Blessing to you, hope to hear your doing better.

Guilty! My AVM was near the fear/anxiety area of the brain, so I think that contributed to a little extra anxiety. I just tried to keep my mind on other topics other than my health and keep occupied I think was the best for me… Now my AVM is gone I feel more at ease…

I had it really bad when I first found out then I started remind myself my docs and I were doing everything we could for it so I was only going to keep myself down by freaking myself out. I get nervous sometimes when I get an extreme headache but that’s about it. I get panic attacks after a foci seizure as well because I get very confused and don’t know what happened and where I am. But my husband is very good a calming me down.

Hello Cindy…
I experience this on a daily basis. When I feel pain anywhere in my body now, I experience an increased heart rate, heavy breathing and then an increase in the painful and tingling sensations in my feet, hands and limbs. It’s scary. I think often the pain leads to fear and then the fear leads to more pain which is a vicious cycle. I find that prayer helps and slow deep breathing does as well. I’ve never been able to reverse the symptoms once they’ve started though which is bad. It takes hours sometimes days for it all to fully subside.