Birthday disaster

So, I got to spend 2 days in the hospital! That was my birthday present :hugs: Was on stroke alert twice! Right side went numb, could barely speak & my eyes were rolling into the back of my head. But my MRI was unchanged. They said it was severe migraines. Didn’t realize that would make you have symptoms like that. I thoroughly scared the crap out of everyone… including myself!
So now, I really have NO IDEA when I should b going to the er!!! So frustrating!

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Lomil, hello thanks for posting, l feel for you and know exactly what you are saying, very frustrating, I have been there many times and yeah, when do you go to er?? How much pain can one endure?? That’s why we’re all here together, only avm’ers can begin to relate or understand, stay strong and carry on,


Wow! As birthdays go, that has to be a rubbish one!! @Christine_O son Jack also had a rubbish birthday last birthday, so you’re in good company.

I’ve a friend who has migraines who passed out with one of their migraines, went stiff, more like a seizure I guess but it was eventually diagnosed as merely a “faint”. They don’t have an AVM, so far as i know, but in any case everyone was happy that going to A&E / the ER was the right thing to do. If something significant happens, always go to the ER.

Have a much better week this week.

Very best wishes,


That is a stinker, in that situation I have chosen a different day as my birthday as my present to myself if something like that happens. It might sound a bit crackers but it helps! I completely understand I had a similar experience not as extreme , but two weeks after I started on my first job back after being signed off work- I hadn’t had lunch and was having a busy day at work, I had to pick up someone I was interviewing with Designer I assist from the station 7 minutes drive from the office. On the return drive at about 16.00 I started to loose feeling in my tongue and becoming slurry then I started to loose the feeling in my left hand and all the way up my arm- It was a lot like the experience I had previously in a hospital setting. I was terrified but I had to get the guy safely out of the car…This went on for about 20 minutes after I had parked up at a supermarket grabbed some food, rang my partner who said I sounded drunk as I explained what happened- it was an ordeal getting round the store like an inebriated person. I then had a cracking head ache and phasing/ auras. I spent the night in A&E. It transpired it was a new different type of migraine. I have had a lot of migraines and thought I understood them. Anyway, my body gave me another less than brilliant surprise. The only thing I can think now is prepare to be constantly surprised, I suffer from another condition and it is often giving unwelcome presents too. I guess I learned to watch for my triggers- what had I done differently in the 24 hours prior? I had been migraine free for about 4 weeks I had had symptoms like it the a bit before- slurring, phasing, auras numbness. On that occasion my period was due, I had not had a lot of sleep, had been driving and only had a banana for breakfast.
Migraines I have had have tended to occur when I have had low blood sugar, hormone fluctuations or tiredness or all three… keeping a diary of your symptoms may help. I keep a diary of my periods for my Gynaecologist and this helps me stay on top of where I may be hormonally this meant also that I could see a likely date for when I may feel a bit odd and having explanations like this helps with the anxiety that comes with any health condition and can cause migraines itself! I hope that helps you a bit and makes sense. Having a strategy to help calm yourself is good, you know your body - you live there! So following its patterns is definitely helpful.


I had a similar issue last year. Tension like headache, visual aura and left side numbness;thought I was having another stroke/bleed.
went to the ER and they called it a complex migraine.
after i got out I met with my neurologist did some testing and determined it was a simple partial seizure.

Wow! I am blown away by all the responses I’ve received… having you all as my support system is simply amazing and I do truly feel less alone in this crap situation because of you all! So a huge thank you :kissing_heart::kissing_heart: I am going to celebrate with some friends tonight & am very much looking forward to smiling & having some much needed laughs.
Just when I thought I knew what to expect from my CCM, another curve ball is thrown! If nothing else, it’s definitely keeping me on my toes lol
And I think I thoroughly freaked myself out last night trying to research the radiation option my new neurologist discussed with me. It doesn’t seem like a great option for my CCM. The possibility of more deficits & not actually helping very much is high. Only 6 weeks into this journey (actually 5 yrs, although I didn’t really know about it until 6 weeks ago) and I feel as though it’s been years!
Thank you all again for your kind words of encouragement & shared stories.
Here’s to this week being better than the last… for us all!


That’s kinda bleep bleep (this is a family site). I pray things stabilize and get better. Keep fighting!

Whoops! I think I’ve let a few “bleep bleeps” slip here & there lol

Hi Mike I didn’t have strokes but I did have loss of vision in my left eye I was diagnosed with tunnel vision after surgery and put on seizure med for awhile I did have some numbness on the left side memory problems and trouble retaining information I was in my last semester of college and couldn’t finish because I couldn’t retain anything I would get very frustrated and really make things harder on myself trying to make myself be like I always was it was hard for me to accept that I couldn’t just will it and make it happen I’m stubborn like that! Lol ! But it has been 19 yrs now and the peripheral vision came back after a few years most of the feeling did too only slightly numb on my scalp now my vision is still worse in the left eye than the right but I no longer have to take seizure meds the only real problems now are I can’t tolerate high temperatures so I have to watch my time outdoors in the hotter days of summer and as long as I stay out of heat I do pretty good! And I do have to write things down or I will tend to forget after awhile but I think some of that is due to age too! I don’t forget as fast as I did the first couple years after surgery. Now I just have to get checked every few years because of the spots they saw at the time of surgery they were not sure when they actually occured I had 2aneurysms the week they found the avm but they saw at least 6 spots where there had been bleeds they don’t know when so they want to watch for dementia or Parkinson’s so far no new deterioration is showing so I think those bleeds were from the avm at least I hope so! I think everyone is different but I think I was impatient and stressed and pushed myself too hard at first and when I finally talked to a psychologist just a couple times he helped me realize that I was working against myself and he really helped me accept things and make a decision to not push myself so hard to stop trying to be just like I was because I wasn’t and the stress was taking a big toll on me so I learned relaxation techniques got a notebook to keep track of things in and just did the best I could! Which included quitting my job that really couldn’t physically keep up with and getting a job part time and working back up to full time and it took several years for me to get as close to normal as I will and I’m ok with that! And I think you will see improvement each year too like your Dr says it’s a slow process and I have to say it really is and faced with all the things that I went through I do feel lucky that I am as good as I am ! Took me alot of years to learn to control the disabilities left from it and not let the disabilities control me! And that was a real struggle in itself!


I had an undiagnosed cranial AVM burst on my 39th birthday. I lived alone and experienced headaches that felt like someone was splitting my head with an ax. When I tried to move the ache got worse so I decided to not move. I eventually went into a coma and didn’t move for a couple weeks. Thanks to the constant efforts by my sister to reach me on my birthday, She eventually got the EMTs to come to check on me. Amazingly I survived two days with a burst AVM and once found on my apartment floor, I was taken to the nearest hospital in Boston which happened to have a surgeon on staff who specialized in AVMs. In spite of the medical opinions of all involved I survived. That really was my terrible birthday present. Eventually, a friend gave a tie which she had bought as a present the previous weekend when we were both in NYC. I had my late dad tie it dor me so that I can slip it over my head in order to wear it. My thoughts and prayers are with you Lomil!

WOW! A story like yours really puts everything in perspective! My heart goes out to you!!
Curious what your status is now? Did they operate? Are you still struggling with issues?

I’m approaching my sixtieth birthday. Most people get upset at beginning their seventh decade. Not me. I’m happy to have lived so long. There was a time, 28 years ago, when a surgeon told my wife and me that I had less than 20% chance of living another year without surgery. If I did live, he gave no promises on what mental functions would remain.

So, I have survived. The percent recovery estimates vary between 80% and 90%. Not perfect, but better than a lot of others. Some birthdays can still be good.

I’m sorry to welcome you to the club, but wish you success.

Wow Kurt, your lucky to still be with us, that story is about a miracle my friend, I have been there and done that, it amazes me how much we can endure and still survive,my thoughts and prayers are with you, take it easy, strong and carry on,

Never, ever hesitate to go to the ER if something strange is happening. There have been false alarms a number of times with my son due to different issues including migraines that caused concerning symptoms. The most notable of which had the Neuro team from Monash cancel their Friday night plans and head into Monash to prepare for travel to Jack at Casey Hospital for emergency surgery. At least we weren’t the only ones who had our Friday night wrecked lol. Each and every time the doctor’s have reassured me that if there is any concern at all that I should bring him in. You are not wasting anyone’s time nor being foolish. You are being very sensible in fact. And if you didn’t go and it was a rupture then where would you be now?
As to Jack and his birthday incident… he didn’t make a grand entrance to his own birthday party but sure made a grand exit…in an ambulance! His 10yo friends thought it was cool :slight_smile: It was his second rupture that day.
I focus on the fact that he got the best birthday present ever - he survived another rupture :slight_smile: Stay strong and keep hanging in there :slight_smile:

21 years on, I’m living on my own and other than hemiplegia on my left side and the inability to understand the paperwork which is often a part of my life. The sister—whose efforts eventually got me to the hospital where they operated and managed to save me after the burst cranial AVM—takes care of my finances and bills. My left side deficits make my left side awareness next to non-existent. This left side problem has played havoc with my dream to eventually retire and be a full-time artist. It is hard to draw much when I can no longer complete the left side of an object. It has been up to me to give up trying to represent the object/person I’m drawing in the very realistic depiction I was capable of doing before the AVM messed with the right side of my brain. I need to be thankful I’m alive and at the very least can do things poorly rather than not at all. I’m in my New Normal life. The other Kurt has essentially died.

I’m enjoying reading the postings on this site. I have no idea when something has been posted and I may be replying months or years after the fact. Well, I’m sure that I’m not alone in experiencing some confusion while visiting this site. It is most wonderful that there are so many postings. For me, this indicates that there are a lot of people out there who survived an AVM. Well if I’m replying to the wrong post or replying to someone whom I think had written to me and in fact hadn’t. Then gosh darn it. I’m just doing my best to be a part of the conversation. My best to all!

I’m always years behind lol. Life gets busy with these AVMs!

Hi Armand,

Did you have surgery or have you left you AVM untreated? Wish you well.


Hi Lauren I get migraines too and learned after my rare CVST stroke that you can actually have a stroke from migraines! I am so sorry that you spent your birthday in the hospital buy better to be safe. I got my AVM / DAVF post CVST and had another stroke during my first Angio/embolism.
I am usually the bad patient and not going to the ER and then when I see my neuro they chew me out.
Hugs Angela