Questions about social life after a hemorrhagic stroke!

General
1

Hi! It's been 3 years since I'd survived a stroke at the age of 30. My life has changed dramatically since then in social way.
At the beginning I couldn't walk by my self, couldn't talk correctly, slow reflex, sudden anxiety attacks, forgot all the passwords from my accounts :), forgot common words, felt stupid, exhausted, low concentration, had panic attacks when going outside etc...
Now I'm fine, I'm walking, talking, writing and doing everything with my left hand (btw I'm right handed), went to yoga for sometime, attending to italian language lessons, even drive my car but still fill the consequences. Still take carbamazepine (2x200mg). I fill that I have about 30% less energy than before, don't fill like I want to go on events, or a restaurants, bars, anywhere there is a crowd, especially at night, afraid/ashamed from getting up close and personal with men , with one word I fill pretty socially isolated. I Know that the problem is in my way of thinking, in my mind and I hope that it will change with time, but time flies...

Anyway, I have some questions that came up to me:

1. Does anyone with similar condition went to the cinema? (crowd, big screen radiance, high volume)

2. Fly by plane?

3. Went on a mountain that is above level of 1000 meters?

I'm really glad that I can be understood and that I'm not alone in this.

Thanks guys and if you have any questions I'll be pleased to answer, or give support if I can!

2

I survived a hemorrhagic ruputured AVM a year ago, I’m 30 as well. I’m glad you’re doing so well. I feel like I’ve changed a lot socially as well. I’m thankful that I survived and my recovery has been well, but I’m constantly thinking and I don’t talk a lot like I used to. I’m not depressed but I’m sad I can’t do things like I used to: writing, reading, conversing, and make decisions.

For your questions, I was told my a couple doctors (included my neurosurgeon) that you can fly. After my first angiogram my doctor told me that I can live my life, just be cautious and be safe. I started to go to the gym, driving, and living my life.

3

I also went through all but started getting seizures and now on medication.
Please be vigilant for seizure issue and panic.
I still not able to control my panic issue and lack of focus.

4

When after your surgery did you start having seizures? I have focus issues too! Panic is normal, do you exercise? Exercises helps, it has helped me to fell balanced.

5

My brain blowout was almost five years ago. I do go to the movies now and then but it sometimes borders on sensory overload for me so I have to be careful. That has improved with time, but any time spent with lots of people, noise, lights etc wipe me out even with preemptive naps. I've had to start factoring that in as a given. Also, since I have the left visual deficit, even with my prism glasses I'm always missing part of the movie screen so it's not as enjoyable as it used to be. Either I miss the left (if I am watching the middle and can see the right in peripheral) or if I try to be preemptive and watch the left, I miss the far right and some of the middle. I usually have to watch a movie 2 or 3 times to get the whole thing and if the words on the screen move around to different spots, I miss them.

As far as the sensory overload - I recently attended a good friend's birthday party at a local hotel/casino. We went early so spent most of the day in the casino before the party, so a nearly full day of flashing lights, lots of sound, smells like cigarettes, cigars, perfume, cologne and food, and crowds. THEN was the party - catered with tons of people I hadn't seen in a while - all who wanted to talk to me, catch up, ask me questions, expected answers etc. I got overwhelmed, dizzy and nearly passed out. Woke up in the ER unable to speak. I was in the hospital overnight and by the next day or so I slowly returned to normal. (The MRI and CT all showed no change from my previous ones)

But stress and overloads can and do cause my brain to get pissy and shut me down. Different symptoms I've experienced are texting and typing backwards, bad vertigo, being unable to think of common words, being confused bout how to get home (even from the mailbox about a block away) and most recently not being able to speak. So far they have all been reversible once I stopped whatever stress or overload that triggered them, but I try my best not to tempt fate.

I have flown by plane since my brain blowout. It usually gives me a headache along the incision lines of my craniotomy and makes it feel like the pressure is squeezing my skull like an egg. But I CAN fly. Although I end up feeling like I have a hangover for several hours (sometimes several days) afterwards.

I haven't gone to high mountain elevations (on land) since my stroke so I can't answer that, but I imagine it would be similar to my reaction when flying. I do notice that when the barometric pressure is high that I feel that "head being squeezed like an egg" sensation" and the aching along the incision lines increases as well as the fatigue. Like you mentioned my energy is MUCH less than before and I can no longer multi task - which sucks!!

Naps are now a necessity rather than a luxury. I used to be able to sit down and write for 8-12 hours when on a tight deadline (I'm a writer) but now a good writing day for me involves at least 3 20-30 minute naps or more.

The other BIG issue that I have, oddly enough, is going to the dentist. Any time they are drilling or even cleaning my teeth with that sonic drill it feels like it echoes inside my skull and it is EXTREMELY uncomfortable bordering on painful. I try to take earbuds to play music, but even with that it can get to a painful level. Luckily my dentist is awesome and they just don't use the sonic polisher to clean my teeth, but there's not much they can do about drilling if I need it for something.

Crowds are also an issue because people think I will see them on my left and get out of their way. However, I CAN'T see them most of the time because of all the other "stuff" going on in crowds, and end up running into them. My family and friends have learned in these situations to take up a position on my left side, and even at restaurants I sit with my left side toward the wall or whoever I'm dining with so I don't end up not noticing waiters, etc trying to get my attention or handing me drinks.

It has been an adjustment but I'm back to doing most things. I got my driving rights back since I can see flickers father out on my left when I'm paying attention to them, but since my vision changes quickly (I think that's more about getting older than the rupture...lol!) and prism lenses are expensive, I've stopped driving and just let my family and friends drive me. However, I am back to writing novels and can do most things, as long as I don't overdo and I listen to my brain. If I don't, it shuts me down anyway, so I've learned to listen. It's like having a cranky toddler in my head that I can't swat on the butt when it's being obnoxious :)

I don't get seizures but since they didn't want to do a lobectomy and leave me with more deficits I have a LOT of dead brain tissue hanging out up there so I'm at a higher risk for seizures which means I'll be on anti-seizure meds for the rest of my life. I'm also on meds for panic attacks and hyper mania. But with those meds and patience from my family and from myself I'm making it work.

But...I can feed myself, wipe myself, recognize my family and can still do what I love, so life is good :) It's just an adjustment, and even after nearly 5 years I do still miss my "old self" at times.

You're definitely not alone!!

Tina

6

Hi
I posted the following discussion on April 8, 2015. I hope you can see from this that it was a struggle, but I did ok. I was married but became a widow in 1997, too young. I have two sons who are doing well. I am happy most of the time now. I think you will be ok. I do not go to the movies, as I cannot drive, cannot see the whole screen, miss things, lose track of who is who, and then I ask questions and annoy people. I hate anywhere there are too many people, i don’t look at violent scenes, and cannot tolerate the bright flashing lights. I do fly on planes and it never bothered me. I did go hiking often with my husband on the Appalachian Trail. He talked me into it and helped me stay on the trail. We climbed up a mountain that was over 1200 feet high. I don’t know if 1000 meters is the same as 1200 feet. I loved being in the woods with him.

Tales From a Long Time Survivor
I thought it might help a lot of you young folks who presently have or recently got rid of an AVM, to have one person’s experience with an AVM bleed and craniotomy that occurred in 1959 when I was 8-9 years old.

It was in my right occipital lobe, and I have had a left homonymous hemianopia since the surgery. Every test I had back then was horribly invasive and painful because scans were not invented yet. I realized afterward that I was different than others, but was never able to figure out why. I used to think of myself as an alien. I knew something was different about my vision, and was told it was a field cut to the left. I never knew it was the same loss of field in both eyes, not just the left eye.

I did not know my brain had bled, or that I was in a coma a little while, and had seizures. No one ever named what I did have; I never had any rehab, and went back to 4th grade bald. No one ever taught me to scan, and I counted steps in an effort to not fall. I did not know they did an exploratory brain surgery, thinking I had a tumor and it was cancer. They removed more brain than they would have today because they thought it was cancer. I never told anyone after I changed to junior high that I had been through brain surgery, and never told them about my vision loss. In those days, as a Catholic, I was told to say only if asked, that I had been operated on for a blood clot. I got no special treatment, and because my last name started with “Ab”, I sat in the first seat right next to the door to the classroom and the clock. Everything, including the teacher and blackboard was to the left, and for me no left world really exists. I was in gym every year getting hit in the face with all kinds of balls I never saw coming. I jumped on a trampoline and fell off balance beams. I once jumped too soon at the pummel horse, falling over the horse, and knocking the wind out of me. I hit a smaller kid who was standing on my left too close to me, when I was playing baseball. I smashed his glasses right on his face with the bat. It was awful.

Even as a teenager after I graduated from high school by just squeaking past failing grades, there was no doctor, eye or other kind of doctor, who knew about hemianopia. They did not know nor ever heard of AVM… I figured all that out myself when the internet became available. I became a paralegal by learning on the job when I was a secretary. I learned a lot by listening to anything I heard when lawyers would talk. I hated school and did not intend to go to college. I did very well at my job, though I was a little slower than others. The difference was I rarely made errors. I used to think I was very dumb, but now know how intelligent I really am.

I hope by writing this here someone will find the hope they need about the future and what it will be like. I want to keep all of you from thinking like I did - that I was dumb, clumsy, and an alien. I was none of those, but can still find myself thinking the old way. It took me a long time to get to the place I am today. The place is mostly peaceful, being proud of myself for continuing to fight depression, sadness, alienation, etc. We have each other and we understand what this all feels like.

beans

7

Miss M, I definitely understand the feeling of social isolation. A serious medical event can really take you out of the mainstream. I had an AVM rupture in 1998 (when I was 37). So it's been about 18 years since it happened.

1) The Cinema - I found that at year 3 I had a lower tolerance for noise than the pre-stroke years. Little by little I noticed the situation getting better. I vividly remember being at an auction run by the Epilepsy Center at NYU. There was some guy who was using a microphone to address the crowd. The high frequency and volume made the experience of being there so excruciating I had to leave the room.

See if you notice a difference between your level of irritation during the movie previews/advertisements and how you feel during the actual movie. During the previews the volume levels are always way too high. Once the movie starts, though, I find that they become more manageable. I predict that you will be bothered less and less at the cinema as time goes on.

When I date (especially if it's a first date) I try try to pick a venue that is as quiet as possible. That way it's easier for me focus my attention on the other person. Ask to go for drinks at a quiet hotel bar. If the weather is nice meet your date at the park.

2) I don't have any particular problems flying on a plane. Make sure to drink plenty of water and no alcohol. Walk around the cabin and to the little foot gymnastic exercises that you can do in your seat. In August I flew to Quito, Ecuador where the altitude is very high. My travel doctor gave me some altitude sickness pills and I had no problems.

3) My trip to the Galapagos Islands took me to the top of a volcano. We were actually hiking though a layer of cloud before we got to the top where the air was thinner. My brain didn't explode. I have fatigue and I take Aderall 25 mg XR. I packed 3 sets of pills for the entire trip so even if I lost a bag I would always have my meds.

I am also right-handed but now I favor my left. When I drive I use my left foot for for the gas and break pedals. This is because of this condition we have called "proprioception deficit." You can't properly feel your limb in space. I don't enjoy playing the piano amy more because my fingers "miss" the keys on the right hand. So now I am practicing guitar instead because there is less need for fine motor control with the right hand.

I found yoga classes annoying because I'm less able to process information as rapidly as I could before. I take private lessons for Pilates, for example.

I've never been scuba diving before but my neurologist said I could since I haven't had a seizure in over 10 years. I just have to dive with a buddy and not go below 30 feet.

I am a member of NYC Hidden Disabilities Group on Meetup.com. See if there are Meetup groups in your area so you can get some extra support.

8

Thank You all, your replies and life stories were very helpful for me!!!

Best Regards,

Miss M

9

I haven't flown or been at a high altitude, but as far as the movies, yes, I have the same issue. The loud noise, voices, and the fast movement on the screen really messes with my head. Socially I also have the same issue. I can't be around crowds, loud noise, lots of talking, lots of commotion, music or bright light for very long before I start to crash and burn. I often try to take naps beforehand if I know I have a birthday party or some other activity that will take me down. I also may show up late and/or leave early, because I can't tolerate the overstimulation. There are times when I will continue to tolerate the overload and do my best to get through it. For example, my daughter's college graduation party with about 50 people coming and going. I managed to make it through pretty well, but I was useless for the next 4 days. About all I could manage to do was bathe, get dressed and feed myself. I was like a zombie and didn't want to be around anyone or talk to anyone. I knew it would take me out, but it was worth it. I just have to try to plan ahead and be ready to rest before and/or recover afterward. It's really frustrating, but I try to remind myself that it could always be worse. So, you're not alone, and each of us have similar yet different experiences based on how significant and where the hemorrhage occurred. Don't feel ashamed at all. We can't change what has happened. All we can do is wake up every day and do our best. Some days are going to be better than others. Learning to live with it is a challenge, but don't force relationships with men. If someone really cares about you, they will accept all of you and do their best to understand you and love you anyway. I wish you the best!

10

Hi!!

My story is similar to Tina's in that I sometimes get sensory overload, tired, forget words, & use the wrong words. I am also short tempered (working on that :))and VERY picky about where I want to go. My rupture/craniotomy was this past December. I have socially limited myself and I find myself needing that isolation, especially if I have been out a lot. Movies - I did that and I have to say there was some anxiety due to noise sensitivity. I think that the movie (Magic Mike XXL) somewhat distracted me from the anxiety and the theater was almost empty :)). I DO NOT do big crowds-too much going on and I overload. I did it once (a comedy show) and I was about to literally jump out of my skin. I couldn't enjoy the show due to the anxiety. I have not flown or climbed a mountain yet. Doctor did say I can fly though...Energy is an issue too! Glad I am not the only one with these concerns!! Check out the flooding video on the website. It was VERY helpful and explained a lot.

11

I think I have the issues; my energy, my moods, my speech, and my nerves. I just push myself through it. I just left a 3 day trip to my 2 and 9 year old, it was a lot. I just tell myself that humans are adaptive, the only way to get better is experience everything. At Disneyland I was worrying about everything, dying on roller coasters but I forced myself to focus on the scenary or talk to my family. It’s a fight everyday.

12

Dear Miss M,

I am 39.back in January this year I survived a hemorrhagic stroke cause cause by AVM. In June this year I had a craniatomy and the AVM was completely removed.
I went through very difficult time same like you physically and mentally. I went through long course of counselling which helped me a lot. My life also changed completely; made me a deferent person, but I always stayed positive and grateful that I am still alive and recovered.
Now I am appreciating things more in my life. I started running, swimming, driving and traveling again.Two weeks ago I took a plane for the first time after the stroke and i didn't experience any problems.
I am very happy that you have recovered well, please stay positive i am wish you to go from strenth to strength.

Wishing you lots of health.

Goran

13

Hello, Goran.

Thank You for your reply which I found very positive.

How is your vision now, do you get easily tired when watching tv, pc...? I do! Do You have paresis on any side of the body as I do?

p.s. Your name is very common in the place where I live, in Macedonia. :) :)

Best Regards

Miss M

14

hi,

Thanks for your email.
My vision is ok it has improved a lot, but same like you, I do get easily tired if is too bright or too long on the computer or TV, apart from that everything is normal.

Always stay positive, think about things you like to do and enjoy the most, keep the positive energy flowing.

I am also from Macedonia,:) ;), I have been living in London for 18 years.

Kind Regards

Goran