Hi, I’m still new here. I have a right frontal lobe AVM. I have a lot of left side physical symptoms along with things like seizures (managed) and nausea but what makes me feel scared is the brain fog and raw emotions. I’ve found I go in and out of these mental states every three or four days. All my symptoms seem to act up at the same time (physical and emotional)I’ll lack organized thought, concentration, and sense of time. I’ll feel confused and mix up words, and definitely can’t read or write or finish a task. The worst part is that I’ll feel overwhelmed and burst into uncontrolable tears ( not much different than the complete panic I get before a seizures) This isn’t like me at all and I’m scared of how my emotional threshold will suddenly disappear. Today I feel great, positive , completely excited about life ( my normal personality) but then when things are bad, I feel like I’m slipping away and there’s nothing I can do about it. I have yet to see a specialist, and I have so questions… but does anyone else go through this?
i can “support” you with brain fog and emotional instability.
don’t know what to say more, honestly. I’m trying to fight it every day.
so, you are not alone
Thank you Artem, that’s why I’m here because It feels easier to not be alone in this.Do you mind sharing a little bit of your story and how you manage? This is me cycling today. I’m feeling absolutely awesome! I’m trying to make the most of it because I know in a couple of days everything will change…
Yes!! I do deal with simular issues only mine group up and is once a month, sometimes 3 to 5 days or when its really bad it can be 7 to 10 days, not fun knowing I got this to look forward to Every month, I does get better you just need to find coping skills and support, my best support is this site because family/friends just don’t really get it, only avmer’s get avmer’s, by the way this is my 30th year post surgery, so be strong, be positive and always be kind to yourself, your not alone and this is tough for all of us, that’s why we are here for each other, it really makes me appreciate the good days so much more and when we im having bad days I know it will pass and what I have to look forward to, we can only do what we can do, when we can do it, sorry I don’t have an answer for you, just encouragement, take care,
had my brain stem avm rupture in 2015. left-side parylized, still can’t achieve “normality” in my movements and thinking, don’t have any hope for future development(
I have been reading about migraine in recent months and it is quite a common aura of migraine to have a sense of dread at its initiation. It also seems to me quite difficult to distinguish migraine and seizure as either can have similar symptoms. So I’m sure the panic you feel occasionally is provoked by whatever your AVM is doing and you might look upon it as “false”, a feeling that is induced in you rather than something “true” wherein you should really believe there is anything to fear. Put it aside as a natural consequence of the effect of your AVM.
The significant swings you describe sound a bit bipolar to me: bipolar affective disorder: I can’t remember if you already acknowledged bipolar in one of your posts or I am joining up information with something I’ve read about someone else. But again, massive swings in mood are a feature of bipolar. I do find it quite remarkable that you have such big swings and can have quite disabling days and other days when you might go cycling.
I hope this might help,
We all care about you here. Keep up the good fight!
All the best for Christmas and the year ahead,
Thank you E! I agree there is no light without darkness. So thirty years! Wow. I guess when I first started feeling sick and went through numerous treatments for everything from Typhoid Fever to MS I was sure that it was all temporary and that I just needed a little time to figure it out and get back to my life. It took six months to be diagnosed with Epilepsy and another two months after that for the Nuerologist to find the AVM. At first I felt angry at myself because I couldn’t control my body and angry at the doctors who blew me off. And I was Embarrassed! I was having so many seizures and I couldn’t stand my friends and family seeing me like that, and I avoided being out in public. My family felt like they had to have an intervention with me because they felt like I was being selfish and putting my kids in a stressful situation, they told me I couldn’t live alone anymore.The loss! I had lost my ability to drive, lost my job, my independence, my ability to take care of my children,my home, all my farm animals! I was in the middle of fixing up my house, I had a beautiful farm of donkeys, goats, sheep, chickens, ducks. Everything I was working for I had to give up. Then someone vandalized our house 20k worth of damages and absolutely everything we owned was destroyed. Honestly though now I’m feeling okay with all of that and positive that the loss has given me a beautiful opportunity. I can say that I love myself exactly the way I am right now, but I also have a vision for my future. I’m looking for any and every way that I can make this transition as smooth as possible. Like you said be easy on yourself. Hearing that you’ve been doing this for thirty years and you are still positive and enjoying life gives me so much hope!
Thank you for making that connection with the migraine/seizure panic. I haven’t even considered bi polar, but honestly when you mentioned it I immediately felt offended, bear in mind I felt offended when a nuerologist suggested migraines. To me those things equalled some kind of weakness. I was so resistant to illness and sure that those things were just excuses for people! HA! I was so ignorant!! And that’s one of the great lessons I’ve learned.
I’m really sorry to hear about what you are going through. What part of your brain did it rupture in? Can you walk at all? How do you pass your days?
I wanted to say also that I manage my seizures with THC/CBD oil and the keto diet. I’ve noticed it can really take the roller coaster out of the emotions. But I’m concerned how cannibis could be affecting my memory (is my memory getting worse since I started using it?)The doctor said the benefits of not having four seizures a day outweighed any negative effects from cannabis. The other problem I have with memory loss, is taking my medicine. If I don’t take it three times a day then I’m definitely not feeling good. I forgot to take it for a whole day and the next day I had a seizure and all my symptoms. Any one else use cannabis?
I can totally relate to the brain fog, it is one of the symptoms along with fatigue which I’ve found the hardest to cope with. Its hard because when I am exhausted and my brain is foggy, I dont feel like “me” and don’t have energy to do the things I enjoy or give fulfilment.
In terms of how severely your emotions seem to be jumping, I think you should consider seeing a therapist or counsellor regarding this. I know theres a matter of pride toughing it out alone but honestly, professional help can do a world of good. I say this as someone who goes to cognitive behavioural therapy myself. They can advise what plan best suits you and support you through this process so you can work towards more emotional stability.
I still have good and bad days - but they are less extreme. I am less hard on myself now and therapy has helped me recognise unhelpful thoughts or mind-processes. I am also more aware of not pushing myself too hard on a good day remembering that just because its a good day, I’m still not 100% - I don’t want to burn myself out and feel awful for days afterwards. Just learning to enjoy myself whilst not overdoing it. I’m sure you’ll find your own balance with time too
Patience in this journey is a very difficult one and so is developing self love. Nurturing yourself and being your own best friend. But that is a gift our AVM has given us - it has forced upon us the task of learning patience and self love not later but now.
Best of wishes,
Thank you Corrine! Yes the fatigue, its awful. I guess I feel like I need to clarify the emotional outbursts. This has been a stressful journey and I’ve had to work through feelings of insecurity/loss regarding lack of independence etc etc.
The emotional outbursts that I’m concerned about are very similar to the aura before a seizure. They come on as quickly as they go away and only last 10-15 mins.Its a sudden sense of panic and complete fear, It always manifests differently, for example once I became completely paranoid about some ravens who were flying around my property, I was sure that they had some kind of conspiracy against me. I knew they were stealing my chickens eggs! What was next, I wondered, were they after me? I was genuinely freaked out, spying on those dang Ravens from my window shaking with fear BB gun in my hand. Another time I was riding my bike on a beautiful winding road and saw a big meadow, I became paralyzed with fear and I suddenly “knew” that in the meadow people were buried and all their unsettled spirits were lingering, over come with emotion I started crying. Its almost funny to talk about this, because those thoughts and feelings are quite ridiculous, but when its happening it feels SO REAL. I didn’t know I had such a wild imagination!
That does sound very scary! I get an initial onset of confusion and emotional panic feeling preceding when I have my visual episodes sometimes. Have you been to see a neurologist? I am currently waiting to see a neurologist to check out my daily visual disturbances and the visual episodes that may be epilepsy brought on by this avm. Annoyingly I’ve had to increase my dose of Topiramate (antiseizure and migraine suppressent) since the visual episodes are becoming more fequent on a lower dose. Maybe your hallucinations/ disturbed thoughts from reality bringing on these emotions could be connected to some form of epilepsy and be a symptom of a seizure that doesnt show otherwise physically? Only a neurologist can tell you that, maybe medications could supress them.
https://www.epilepsydiagnosis.org/seizure/aura-overview maybe reading this might resonate with you to discuss with your neurologist?
Best wishes, Corrine
Yes It just occurred to me that maybe when my AVM is “irritated” and all my symptoms are flaring up that also my Epilepsy shows up a little.I’ve tried many seizure meds and they were all complete nightmares and didn’t reduce my seizures. So I’m managing them with keto/ MAD diet THC and CBD oils. I’ve found if I skip my oils for one day or cheat the diet I’ll have seizures right away. Kinda hard to remember to take my meds three times a day when I have the brain fog lol I’m thinking if I can keep it in mind that it’s just electrical happening in my brain and not a reflection of my true state. Easy to say when I’m clear minded !!
Hello, happy holidays and thank you for your reply, WOW you have been
through a lot and don’t know were to start, your story is very touching
and made me cry, its seems you’ve lost everything I was never able to
obtain in life, no one person should have to experience all you have been
through and then on top of an AVM, you are the positive one and obviously
are a very strong person, I thank you for your kind, encouraging words,
very helpful to me and that’s what this site is all about, In hind site I
can say my big mistake was not accepting and facing my AVM from day one,
I pretty much buried it in denial and forced myself to move forward,
well, you can run but you can’t hide, a couple years ago it all caught
up to bite me in the butt, what a rude awakening, I am a brain surgery
survivor and thiers just no way to get around that, this is such a hideous
aliment that has totally and completely controlled my life, I would not
wish this on any one, but I guess it’s just part of what makes us who we
are?? I dont know?? But I can share my experience in hopes it can help
others and maybe help to make better choices, acceptance is number one,
it has a way of forcing you to prioritize and realize what’s important,
love kindness understanding, not judging others and making the best of
every moment, good or bad, just be thankful for what you have, someone
has it better but someone also has it worse, sorry to ramble on but your
reply was very touching, wishing you peace love and contentment this
holiday season, POSITIVE!!! take care and be strong,
Double for that post! Love it!
Have a fantastic Christmas and very best wishes for the year ahead!
This post is what makes this group what it is! All the best, and thanks to all who are so open and honest here, it helps us all. John
I feel you, it isnt easy when your in the moment to keep calm. It is so easy for others or your own self to undermine how hard this is by trying to use logic to explain away these emotional responses. But in the end, no one knows how you feel better than you do. All we can do is our best to try to manage these emotions and get through and cherish the good moments. And ofcourse remember how blessed we are to be here.
I use tonnes of alarms on my phone to remind me to do things to get past my foggy head. Maybe try this or post it notes or other differant things to see what works. It is a shame the anti-seizure medication hasnt worked but im glad you have found an alternative that works. I hate the side effects but im lucky that it does work for me so far.
Wishing you a Merry Christmas,
I’m grateful to cross paths with you E and with everyone here! I appreciate you opening up about your experiences.A little inspiration goes a long way!