Nice to meet you (?)!

Hello :slight_smile: 28/F here and I am super new to this journey - I really wanted to get an MRI done to check if there was anything structurally wrong with my brain as I suspected autism and I had some psychiatric issues from an early age (namely diagnosed OCD at 6 and a lifelong history of anxiety disorders … ) . My severe migraines were almost … more of an excuse really. Ended up finding a small right occipital AVM and some gliosis basically. Got an appointment in a few days but for now I don’t know if it has ever bled or anything.

That got me wondering if my “weird episode” when I was 19 was due to some bleeding. I keep describing it to doctors and they never have any idea what caused it, maybe they will now that I got the imaging exams done? After a long period of prolonged stress (much mourning etc.) and putting on some weight, one day I could hear but not understand what people were saying, then felt a “back and forth” thing in my head and for the following days my behaviour got really weird (including panic attacks, etc.) and I forgot the reasoning behind many of my actions basically. That, obviously, caused me a LOT of issues (including lingering paresthesias and positive visual symptoms) . I struggled with basic mental functions and basically worked alone on my own rehab (being a psych student was a curse and a blessing …) for years. A couple of doctors prescribed me useless psychiatric meds so I gave up on trying to explain. Also, I am quite straight edge and never smoked or did drugs or alcohol or anything ; not obese and my blood pressure is consistently 120/80 (no cholesterol or diabetus either) so I ruled out vascular possibilities but my EEG came out clean, so I was at a loss for a while. I actually said “there is a bomb in my brain and it’s going to explode again” a couple of times before finding out. Turns out there kinda was one. Not sure if that’s what ruined it so much!

Anyway, maybe someone can relate to some of this or maybe not, I really have no idea. Sorry if I sound a bit too random and erratic I don’t really know what to say for now lol. Best of luck to everyone in your recovery processes!

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Hey Rahzel,
Firstly, Welcome to Ben’s Friends. Lots of good, knowledgeable people around here.

Not random at all unfortunately, your experiences on this journey are not unique. As for erratic, you show me someone whose been told they have something inside of their skull being ‘cool, calm and collected’ and I’ll show you a monk :rofl: The process of working through it all after being told there’s nothing wrong takes time. I still have periods where… let’s just say my comments with regard to medicos can be less than complimentary :rage: but not without cause

My ‘official’ neuro journey started in my mid 20’s. I say ‘official’ because for many years I’d been telling Dr’s “something’s not right” only to be told ‘We can’t find anything, so it must be a psychological issue…’ That was until they DID find something and it was like ‘Ohh look what we found…’ Like it was all something new. I could have screamed.

Now, to get a doctor to agree that the former diagnosis was false. That is rare, VERY rare. I have been on the medical merry-go-round for many years and only once has it been eluded to as a cause/effect for psych issues. They seem rather too quick to simply rule any psych effect out as not related. It can be really frustrating to say the least. I gave up trying to get those answers in the end. Often in just mentioning it to medicos you could see their eyes glaze over and all you get is a ‘possibly’ or a ‘maybe’ but no real answers.

I think the best idea is to try and think about things in an order. Presently, you need more information before you go too far down this path. Some people can have an avm and really have no idea, until it was shown in a dental scan, some are non-symptomatic too. So a consultation with a neurologist is a must. It could be deemed as a low grade, that is a low risk of a bleed or it could be a more concerning type and that all needs to be assessed by a professional.

Now, I’m going to make this sound easy, but OMG, I know it’s not.
Slow down and breathe…
TRY not to get too far ahead. It is VERY easy to go down the ‘Worse case scenario’ line. I know this because I did it. I thought of all of the worst things that could happen. Stressed myself out to the maximum, which stressed everybody else out too. It was nasty.

You NEED information from a credible source. Your neurologist or neurosurgeon. We can be a source of support but we don’t have your scans, we don’t have your medical history etc. PCP’s can be great for your everyday sort of ailments, The internet can be a great source for general information but ‘Dr Google’ is not a credible source, when it comes to neurology, you need a neurologist. Once you have their report a plan can be made. Trying to make a plan without this information is impossible.

This is not easy and we know it because we’ve been there too, so come talk to us.

Now, remember, Slow down and breathe…

Merl from the Modsupport Team

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First of all: Thank you so much for telling me all of this!!!

Yes, I just started it one week ago (when I received the results) so I am going through the roller coaster now - the “SO I AIN’T JUST ‘WEIRD’ AFTER ALL!” , the “the fights I could have avoided if I knew how to disarm the bomb …” , the “wait oh no are they going to open my head” , the “shook my head/got nervous, here comes the local headaOOOH I get it now!” followed by “… and getting it is SCARY and now it hurts more oh no please” , the empty staring and acting weird at the job because I am trying to go “no thoughts head empty” so it doesn’t hurt now that I know what’s probably causing the migraines lol. My therapy isn’t (re)starting before January so I am just … well I am rather calm tbh but it’s hard to not feel a bit erratic and “?!?” for a while at least. Worse, not sure if the “feeling” is all there is to it - I feel kinda hypomanic as I did just before I had my “weird episode” and I am Not Doing Great lately (yet another stress and mourning phase!) which is why I went after the imaging exams anyway.

It’s lovely to know this. I only did my basic research so far but I found at least 1 woman diagnosed OCD with a small right occipital avm that bled when she was a child so I tried to research and then realized there’s an absurd lack of scientific research on this. Lol how dare you say someone has a psychological issue mainly because their brain was Born This Way ™ not because they aren’t taking (expensive SSRI no. 12894) :slight_smile: The “good” thing is I never got SeRiOuSlY diagnosed. Every psychiatrist I have been to seems to agree on anxiety - but I told the last one “yes, I am anxious and fresh grass is green” as I was THIS tired (and trust me, being a nerdy psychology BS makes you angrier at the rampant incompetency and avarice - these folks were supposed to know better than me …) so I always refused meds too, not buying into the whole “this makes you feel like shit as it is supposed to but in a couple of months your brain will adjust to feeling like a very different person and you will love it, rest assured!” discourse. I don’t have a trusted mental health professional either - my trusted MH profissional has always been myself worryingly enough … and now I am glad it is. shrug

Oh for sure I will. I can’t wait for my appointment and to be fair I don’t stress over it much. I am like, well, worst case scenario I die or whatever else could happen if I didn’t know it could bleed and just let it roll. I was so stressed out from trying to explain to others why I was worried about my brain and stress levels and receiving “eww, she’s mentally disturbed ewwww!” looks/comments so this makes me calmer which in turn makes me feel less anxiety/sadness over it, at least. So, I am actually happy lol. It’s not even my first “rare malformation that requires complex care to avoid dying prematurely” so yea. As long as it helps me handle the life I haven’t been able to anymore, I am glad :slight_smile:

If there is one thing I learned this week it is that you folks are all quite cool. I am very satisfied with the community, and self-advocating is so, so important, so it’s good to know that we can exchange experiences and go spiderman meme on eachother. Nice to meet you and sorry if I typed too much again LOL!! Thanks again & Feel free to contact me whenever, too!

Just a quick hello and welcome from me as well. I find it common when there is unknown health issues the fall back is mental health, depression etc…nice to know now what you know. It’s a journey for sure, but like Merl said, it’s important to find medical folks you trust. This is easier said than done fairly often! I was diagnosed due a bleed and that is when my journey began, no indiction I had an AVM prior to that. I was certainly off when my bleed occurred, worst head ache of my life by far, memory issues, sensitivity to light etc… Take Care, John

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I timed out reading your post but welcome!!

I think my adds at this point are:

  • It looks like some things might be to do with your AVM but some things might be to do with your gliosis (I know nothing about that side of things)
  • It is perfectly NORMAL to lose it when you get a MRI result like this, ok? In fact if anyone doesn’t lose it a bit when they get a diagnosis, I think we need to be concerned!

It’s great to talk and that’s what we are here for. As you go through discovering what this means and what your doctors recommend, we are here as a sounding board to go Spiderman meme on each other, or whatever you need.

Ok?

Welcome! It’s great to have you find us.

Richard

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Thanks a lot :slight_smile: It is, and it’s so annoying (because, frankly, it is unfair) that some folks go “oh but you aren’t taking psychiatric meds, of course you’re going to feel like this” when you have tried a bunch already but they didn’t work - turns out you’re always in the “10% of people don’t benefit from this” statistic because your cause is organic (not that I knew this - I only knew I always fell in the 10% …) so it’s just how it is. :confused: Thanks so much and I totally know what you mean, haha, I am looking for a trusted professional too but it’s been hard! Thanks and best regards in your recovery!!!

Hello, thanks a lot!!! :slight_smile:

Actually, I am so, so glad to hear this - I can tell I am at a bad place mentally and people (at my job, etc.) keep expecting a lot from me and pushing me around because a) I am usually a good and dedicated worker/daughter/etc even through abuse when I am feeling mentally fine and b) I don’t want to share about this because I know how gossip spreads and people who aren’t on my side unfortunately are only going to try to take advantage of me for being vulnerable at this point which I know because it happened in the past when I ended up having the “strange episode” . I am unfortunately a very lonely/alone person (which has to do among other things with avoiding people for years because they trigger stress + migraines …) . My thought processes aren’t top notch right now (and I feel like I am deliberately trying to “shut down” some of them so I don’t feel bad migraines and “bomb pulsating” again which I assume is the AVM going “hey can I bleed now” … ) it feels even more vulnerable. It’s a snowballing thing really. So, to hear that “it’s fine to be unwell right now” makes me so, so happy honestly. Unfortunately I am only seeing the specialist on the 27th so I am just trying to smile mechanically, pretend stuffs fine and wait IRL right now lol. But reading experiences and everything has been great and really calming in a way so I really want to thank everyone. :slight_smile: Let’s all go Spiderman meme on eachother, I am here for it LOL. Thanks a lot and best of luck in your journey as well!

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Hi Rahzel

As others have mentioned, it’s completely fine to not be ok and be a bit of a mess. Go easy on yourself :slight_smile:

Complain, rave on here, ask questions, what ever you need to do to help yourself

Wanted to reply because I actually posted something a while ago where prior to my surgery (prior to even knowing I had an avm - occipital lobe also) I had different psychiatric problems including some paranoia and was put on many meds

Obviously it won’t be the case everytime but in my case, most of the psychiatric problems went away after surgery so our thoughts are that there was blood flow or pressure on parts of the brain that were causing psychiatric symptoms so I truly believe sometimes some avms can cause psychiatric symptoms

Would also explain why the meds did nothing to help me because brain chemistry wasn’t the problem in my case

Wishing you the best :slight_smile:

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Hey Rahzel,
You certainly don’t need to be a ‘nerdy psychology BS’ to make you ‘angrier at the rampant incompetency’. That ‘Here, take a tablet…’ attitude is highly prevalent, especially when they have great difficulty in defining the psych vs neuro symptoms/side effects.

I MUST also agree with DickD, "It is perfectly NORMAL to lose it when you get a MRI result like this, ok? I’m fact if anyone doesn’t lose it a bit when they get a diagnosis, I think we need to be concerned! "
The medicos can often seem a little blasé, they deal with this sort of thing everyday. But you and I don’t have that luxury, we’re the ones living it and that’s damn shocking to say the least, so is your stress, that’s normal.

You can try and explain it to others, try to explain what you are trying to deal with, but short of that “Ohh you poor thing…” attitude (which gets really old really quick), others can’t actually comprehend the realities of it all unless they have been ‘here’ themselves. That’s where we come in, we know 'cos we’ve lived through it all too.

Merl from the Modsupport Team

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If you find it difficult to share in real life, share here. It’s much better to be able to get out your worries somewhere. Happy for it to be here.

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Thanks a lot!! :smiley: sorry I took so long since I spent the week before christmas back home with family members so… yeah.

It really hurts to be dismissed so often even though you feel like you know what you have (often because there is a lot of lonely and painful self- brain re/wiring/training involved :slightly_smiling_face: ) and … yeah. It’s sad to know there are so many in this situation but it is comforting at least!! I definitely suffer from paranoia and other symptoms - I felt like I could relate so much to some people who shared their experiences with (particularly right occipital) AVM which is why I decided to join ; I am glad you are doing better now and I wish you the best in your recovery!!

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Thank you - and yeah exactly. I mean, being a nerdy psych BS with brain struggles of my own definitely made me hardworking and attentive in that sense ; because I know what is psychological I can also suspect when something is… not. I am glad I do what I chose to do and like it or believe it (basically mental health …) at least. But yes exactly, the way most professionals treat stuff - it is so uninterested, so blase, it is difficult to not feel down. It’s always either “it’s no big deal just brain angiography lol!” or “oh no you pooor demented thing” and both attitudes get really old quickly indeed. I can assure (hypothetical) you it matters enough for me to persist and go through the motions to find help even though many professionals are shitty (because guess it, It Hurts …) and I can also assure you that it doesn’t make me any less capable when it comes to… nearly everything, so. Yeah. I get what you mean, it’s so unfortunate but I am glad some advocates are voicing out their experiences and medicine has gone a long way :slight_smile:

Thank you for replying and best of luck in your endeavors too !! ~

Thanks so much. :slight_smile: it is super helpful, this community. I keep having doubts and worries that seem to be too specific for Google and it feels great to see so many people have gone through this before lol. Thanks a lot, again!!!

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For 20+yrs prior to my own brain ‘incident’ I was working with youth and people with disabilities and I completely understand why that disconnection by Dr’s is needed, as at times, I needed to do exactly the same thing. An emotional involvement can fog our ‘logical brain’ processes. But I tried (where possible) to us empathy rather than disconnection. When working with my former clients, that disconnection approach can seem somewhat insulting. So an acknowledgment of where the person is at was a must, but then showing them a route or a process of getting past that point can be much more beneficial then leaving them to flounder. Picking up the pieces after people have been floundering is much more difficult than giving a simpler, more direct solution.

Unfortunately, I’ve been told I’ll never be able to return to my former role, which has been a very bitter pill to swallow. My experiences in those roles has given me a HUGE insight into my own situation today. In some regards my clients taught me much more about resilience and adaptation than I ever taught them. I have used that as a bit of self motivation. Some of them were in a way worse situation than I.
ie ‘If ‘John’ can keep going, what have I got to complain about…’ as I give myself a metaphoric kick in the pants.

OHH YES medicine has come a long way, but that’s not to say it couldn’t go further. I’ve lost count of how many members have reported issues prior, only to have their concerns dismissed or diminished. They then end up in Emergency because their concerns weren’t listened too and I’m not sure how we get to change that. I know for myself, the medicos were making out I was the only one having odd symptoms, they had me questioning my own sanity. Just in having someone say ‘Yea, me too…’ was such a ‘phew’ moment, “So, I’m not the only one at all…” and sometimes we need to hear that because this journey can be very isolating.

Merl from the Modsupport Team

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Merl, double :heart: :heart: for that.

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Oh for sure, I know that even from experience and agree with that. Regardless, I do feel iffy when I go through so much to get to a professional that is NEITHER empathetic nor knowledgeable. I guess my standards are too high - my life was saved by a very skilled team overflowing with both when I was 13 so these are the standards I have always looked up to :slight_smile:

But yes absolutely. Everything makes sense now - by reading these forums I realized many of my lifelong “weird symptoms” that made so many mental health professionals look at me like I was lying (and this is what gets to me …) are in fact very common among us AVM sufferers ; AND it made me see how much worse it could have gotten had I not insisted so much and not mistrusted professionals and colleagues so yes… at this point I am very bitter. I think it is great to stay positive and grateful and I believe this is what made me overcome my past brain damage episode and recover but at this point, now that I am actively avoiding another, I really need to voice out - you feel me … Most professionals are not humble enough to say “I don’t know how to deal with this” - and I say all of this as a professional too, I can’t say I always do the right thing. Of course I understand professionals are only human (in fact one of my main reasons for being mad at this … whole COVID ordeal was this … I hated thinking of what health pros had to be put through because of careless people and dumb political ideals - lol my workers health background is showing) - I believe that good work conditions allow for good work :slight_smile: and being a professional in care is just so difficult. But yeah, two wrongs don’t make a right or whatever. Even seeing this I wish they would at least listen attentively. Not to my “emotional pain” but to the symptoms I am clumsily trying to describe really. Instead of just letting me bleed for all they care …

Lol sorry I talked loads. Anyway, best of luck to us all in this journey :slight_smile:

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Welcome to the family! I hope everything works out for you & I know it can be difficult but please try to stay positive at all times as there is light at the end of the tunnel… God bless!

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Thanks so much!! We all go through so many events in this life not all of them good - I guess this is just one more :slight_smile: best of luck to us all in our journeys !!

And I think for those of us who have been discredited, made out to be hypochondriacs or had our symptoms minimised only to find… It is real, VERY REAL, that bitterness is natural. I often joke ‘I have a love/hate relationship with medicos. I love to hate them.’ And although it is said as a haha (joke) when you’ve been placed on that medical roundabout again and again (and again…) it’s no wonder we can sometimes become disheartened with the medical fraternity. They wonder why I question them (They don’t like being questioned, in fact, some get rather anti about it) but when you’ve been burnt by their ‘know-it-all’ attitude, well, it’s no wonder we question.

“I am just trying to smile mechanically, pretend stuffs fine and wait…” I think we all do this to some degree. I know for me personally, if I sit and think about it all… …OHH what a mess. If they only knew of where my mind takes me. The medicos seem to think that by minimising it all we just move on. Well, don’t I wish!!! So I put my happy mask on and make out it’s all OK. Sometimes my masks don’t work too well, and although I say ‘I’m OK’, my eyes betray me and some people, like my wife, can see through my charade. I have a few throwaway lines I use to minimise how I look ‘It’s all OK, nothing a bullet wouldn’t fix…’ ‘It’s easy fixed, just chop it off… …at the neck. That’ll fix it…’ ‘It’s all sh#t, it’s just the depth that varies…’ with a silly little sarcastic laugh at the end of it, hoping that I’ve convinced them, all is fine. The problem is that what they can see is closer to my reality than I want to admit.

Merl from the Modsupport Team

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Yes, exactly this - as a kid I didn’t get why my dad mistrusted doctors so much and well I wish I still didn’t. I learned the hard way … :frowning: they really hate being questioned. As if I was expecting infallibility. All I want is care - carefully looking or explaining … sigh. I am a sarcastic piece of shit very often - it makes me smile as I think “at least I can still be witty” … but yeah it really hurts. Knowing I can’t afford good medical care hurts worse … oh well.

Thanks for sharing :slight_smile:

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