Feeling lost in a world that I never thought I would find myself in

General
1

Hi all,

Been on this site for a while now ...since July last year when I had my 2 nocturnal grand mal seizures and discovery of a right frontal lobe AVM.

so I dont even know where to start really!! suppose from when my life changed would be a somewhere.

up until July last year I was a "normal" every day kind of person went to bed one night woke up the following day with paramedics surrounding me and asking me questions like what my name was , what year was it , who the person was in front me ect and all I could say was "I dont know"

got taken to hospital and they did an MRI to discover I had a right frontal lobe AVM that had bled and had calcified.

surgeon came to see me and said we need to do a Craniotomy to remove the AVM because of the high risks , I was like OMG I never even had any type of surgery in my life and im perfectly healthy what is going on, didnt even know what an AVM was or never even heard of it until then.

they put me on Tegratol for the seizures and said wait for your surgery date to come through, I was sent home with my wife she was frightened because she was scared of seeing me have another seizure I was frightened cause I was scared of dying or worse from the surgery.

for months I was confused, sleepy , drowsy , could not handle crowded palces or to conversations and it felt like I was stood in a room with a million people screaming at me at once, I couldn't follow conversations, suddenly I cannot take in information, my words all come out wrong, I have panic attacks , and would snap at the littlest things that normally I would let go over my head, my emotions are all over the place , I cant show love when I want to , or express my self as I would normally , simple things like cooking a meal became a mammoth task and as for multi tasking forget it.

I became very depressed and find myself having lots of suicidal thoughts even to the point of planning it "why" I dont know.

then I had my surgery on November 4th 2013 , I was down for 5 hours or so and came round and the first thing I thought was " I am so happy to still be here".

5 days in hospital I was sent home , I thought great its over and I can get on with my life ......... how wrong I was.

on January 16th this year I had an argument over a "lunch box" of all things with my step son he text my wife and said he dont want to live with me anymore my wife comes home from work early and we end up arguing .....one week later I have divorce papers handed to me .... still dont understand to this day what happened we had only been married 16 months and everything was perfect up until my AVM came to light ......

now I still feel very depressed, I still find I am snappy, and I just dont feel like I am the person I was I try taliking to friends and family and all they say is " pick yourself up and carry on" ....... how do you do that when you dont understand what is going on in your own head!!!!

I find myself feeling lost and confused in a world that just dose not understand what is going on with my head, they just say " well you cant see the scar so you must be good"......whats that about !!

you say "CANCER" to someone they know what you mean you say "AVM" to someone and see what they say ....its always " whats that then".

I just dont know what to do next , it is only now that the
neuro rehab team is getting involved.............why was I not offered this in july to help deal with the sorts of problems I could face.!!

my neurologist has only just started to get me of tegratol and onto keppra which he says has less side effects!!!

I find it hard to sleep I have nightmares and dreams, that are so really I find it hard to distinguish between what was a dream and what is not.

I cry at the drop of a hat and for no reason what so ever and people say " what are you crying for" and I say I have no idea.

is it just me or is this "our new normal" I dont know , I wish there was a place local to me in the uk im in coventry. where people with the same thing can go and talk at least we may have some understanding of each other and to what is going on in our heads.

suppose I dont know what the point is to this post but just want to know that I am not alone in all these strange things that I have going on in my head. x

1 Like
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First, Darren, I am so so sorry for all that you went and still going thru. It breaks my heart. I will start by saying that you are NOT alone!!! I have seen so many people struggle in their marriage following such life changing events. It makes me very mad at the world, honestly. I often feel misunderstood too. I am a changed person and I work so hard, every single day, at remaining as close as the person as I once was, but my loved ones dont fully understand the efforts that I put in, and sometimes make it obvious and makes me feel like I am not good enough anymore. However, I have the confidence in myself that I AM, good enough, and if they cant trust that I am still the same person in my heart and in the inside, it is their loss, and not mine. I am shocked that your wife divorced you so quickly, but at the same time, I am not. Its naturaly for you to take it personal. I am very sad that you seem to have no friends that have deep compassion and understanding in what you are going thru. There are a lot of people here ready to be there for you. I life in the USA but hopefully someone from the UK will see this post. I hope that your therapy will show some improvements. All that you are experimenting is so normal and the only things that are not right around you right now is the support you are not getting!!

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Thank you for your reply dandilion , think that’s why I turn here as everyone on here seems to have an understanding of what feelings and emotions I am going through where ever where else i turn there seems to be no understanding of what I or we go through each day it just feels like a constant battle some days. X

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Darren, you definitely are not alone. I'm so glad you joined this Network where you will receive great support and friendship.

My AVM ruptured in 2007. I went through so much of what you have mentioned. I wish they had provided you with neuro rehab therapy immediately after you were released from the hospital...It was my savior. Make sure you accept anything you are offered.

Also, please know that having brain surgery is not like healing a broken leg...It takes a very long time for your brain to heal. Stick with it tho...things will get better...I promise you.

We are always here to support you!

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I know from experience how painful it is to have a spouse "reject" you when you neded them the most. My husband of 16 years left me when I was diagnosed with an AVM before I even had embolization and surgery. Just think of it this way. You spent 16 months in a marriage to someone who proved they weren't going to be there for you during the tough times. At least as painful as that is, you didn't waste 16 years of your life like I did. After my treatment people would tell me I was depressed and I would so -No, I'm in grief. I was grieving for the person I was before the AVM, who I was never going to be again and for the life I used to have. It's completely natural and to be expected to grieve when you experience great loss. It's a process you work through juast like you'd grieve the loss of anyone close to you. Everything you are feeling is perfectly natural, normal and to be expected after a huge life-changing event. In the USA they have counselors who treat trauma survivors and that might be helpful to you like it was for me. My family is not supportive either so I have learned that I don't need them to validate my experience or my life. Give yourself time to grieve your losses, Know that many of us have felt and experienced the same feelings and experiences you are dealing with and we care about you.

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So sorry to hear what a terrible time you have had. I understand about
feeling so bad and people not understanding. So sorry to
hear about your wife. I think it’s just too hard for some.
But there is a lot of support out there.
Here is another site as well. https://healthunlocked.com/headway
They are in UK ( Headway) they have support groups all over I’m sure there is one in your area.
The NHS has information on them if you need.
They are free and you don’t need a recommendation from your GP.
I was in London when I had my bleed last year.
Still working on getting better have a ways to go. Prayers to you and there is always support here!

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Darren -
Your story breaks my heart. You WILL find everyone here is supportive and understanding. No one expected to be here, Darren. Sometimes it helps just to know that you're not alone, that others have experienced similar or worse events, that others know the terror and confusion you are going through. In my book, the most tragic thing about AVMs is that they so often strike young people. I'm 65 and I often feel guilty when I read people's stories here because my AVMs were caught before they did major damage. I have another growing, but so far it's just a trickle. Still, it brings back the fear. My son, who has uncontrolled epilepsy, has gone through similar issues to yours - the past year and a half they've been trying to find a med or combo that doesn't cause really nasty side effects. He was always a really easy going, laid back kind of guy and became a raving *&# on several of the meds. He was an incredibly bright, high potential guy who is now completely unable to work, reclusive, and depressed. I feel completely helpless and would give anything for him to have the support and understanding that I hope this group will give you.
Be strong, Darren. It's incredibly difficult, but we're here for you.

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Darren, hang in there, I somehow feel the same, still recovering from brain aneurysm, support and understanding from family, relatives and real true friends show…

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Please remember that so many people are not sure what the brain does, much less how much damage it can have and yet they don’t see. I think you truly got let down by those who are supposed to be there for you. I will be praying for you. God Bless! We are all here for you!

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Thank you all for your messages and kind words , I do find this site is the best source of information and advice , even more so than my neurosurgeon, neurologist.

I have had a meeting with a Neuro psychologist yesterday afternoon , and there offering lots of different things he said there has been a lack of communication between departments?

they asking me to do a cognitive test .....what ever that is?

They just dont seem sure on what the issues are though he said it could be a combination of the seizures and the damage from them combinded with the surgury and the medication with the added stress on top of losing my wife? but they say they cant pin point any one thing.

they have also said an occupational theoropist nurse will visit me next week at some point.

god knows what they are doing with my medication as I had a letter yesterday saying they are going to change the meds again back to the tegratol. grrrr I dont want to be on that it makes things worse. they have only been on the keppra and clobizam for 3 weeks and there already messing it about again, waiting on a phone call today from my neurologist to see what can be done about that. feel like im a human guinny pig sometimes!!!

today feels like a strange day as the sun is shining and it is beautiful outside but I dont know why but I have no motivation to do anything today, does anyone else get like that?

other things are I have dreams that are so vivid that I at one point I actually had a conversation with someone about one and I thought it actually happened its a horrible feeling, I cant even nap in the day when I get fatugued from taking in to much information as when I do I just go into a weird dream state that can give me knightmares and when I wake up I am so frightend and it takes me a while to come round from it , does this happen to anyone else as well?

I wish all these brain specialest people would read this site and maybe they could tell people how to deal with these things and what to possibly expect when we have avm's.

xx

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I was really touched by your story. I hope I can be a friend or a resource or even just a good listening ear for you when you need it.

I am the wife of an AVM survivor. Our Bleed was in the left occipital lobe, Christmas Eve of 2002… He was expected not to survive The first 48 hours, in Coma for the next 2 week. 3.5 weeks later Took him home and did the rehab.

On March 20, 2003 three months after the bleed, he went in for a 5 hour scheduled craniotomy that lasted over 12 hours and the doctor came out and said that He just got tired and he Didn’t think he got it all. It was a tricky one he said and it was about 5 to 6 cm.

He’s a Top-notch neurosurgeon so I knew it was something that he just couldn’t avoid.

He then said I can get some operating room time on Sunday, this was on a Thursday, and go back in. When he said that to me I Felt like I was punched in the stomach.

We did it. He went back in on Sunday for another nine hours-

we had to wait seven months for another angiogram because They couldn’t do Another one that quickly again. That was the only way to know for sure if they got it all.

I’m happy to say that the VM was obliterated in surgery but I’m sad to say that my husband is a pretty severe epileptic, He has trouble with his memory and he feels as if he thinks a lot slower than he did before–Although he’s very sharp and just hard on himself, I honestly believe it’s the anticonvulsants he takes twice a day that bring a lot of that sluggishness on He is blind on the right side. Numbness on the right hand right leg, but movement in everything.

He’s doing really well and went back to work within three months of the surgery!!!

Things are so much better than they could have been, And I’m so grateful, But I would be lying to you if I said there wasn’t the occasion I feel a little cheated. It makes you feel very conflicted Being blessed and robbed all in the same sentence.

It’s taken a long time for my husband and I to go back to husband-and-wife. moving away from our caregiver and patient relationship.

Please know that you’re not alone, not one of us thought we would be sitting In this spot. A times It is overwhelming. Heck, I had never heard of an AVM before.

I wanted you to know my story because I thought maybe you might have some questions about being a spouse on the other side of this, that I could answer --if you do fire away-- I’m an open book And here to help in anyway I can.

Best of everything to you and please keep us updated

Kim

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Hi Kim,

Thank you for telling your story , it sounds far more traumatic than mine was I only had to have the one operation to get mine gone not two!! god knows how that must have felt not just for you but your husband as well.

I agree with what your husband says about the thinking a lot slower that's how I feel as well, everything just seems to take forever for me to take in and process, where as before my seizures and op I was extreammly quick at problem solving and taking information in, I do think that some of it is due to the antiseizure medications as when I stopped taking my day dose of tegratol "againest my doctors wishes" I did feel more with it and things did go in a little faster, but I still find it a daily struggle to do it, I just did a cognitive test online and ended up giving up after question 5 as it was just so hard for me to answer the questions and see the problem solving questions and work them out , just sat there reading the question over and over and over again and still didnt make any sense which is just so frustrating.

as for the care giving side of things, I have tried so many times to see things from my wifes perspective and to understand how she must have felt and I know all this had put a huge ammount of strain on our relationship not only with my wife but my step son as well.
still cant get how we went through months upto the sugery of waiting and confusion and me being all over the place then 8 weeks after she files for divorce when only one week earlier everything was what I thought was fine now she wont even give the time of day let alone anything else , I know she always said she was terrified of me having another seizure and it was the scaryest thing she had ever seen but thats it really.

I have since moved house as I went to stop with my mum overnight the day we had our arguement and she changed the locks and wouldntt even talk to me, Im ok now in my new place and settled in but with everything that has happened in such a short space of time its still all a lot to deal with and I just keep thinking if it had not of been for my AVM we would still be ok if that makes any sense?. we never had any support from outsiders as to what to expect or what challanges we would face. the only thing I ever said to her was " what ever happens to me in surgery remember I am still the same person you married im just fighting to get back" and those words just og round and round in my head some days. I find it difficult to believe the one person that I thought would be there and stand by me in my time of need is the one that turned there back to me , she just said she felt un-loved which in a way I suppose is right because I was so out of it and not with it for months and worried about if im going to make it through the surgury and what may happen after the surgury. the last words my wife said to me when I went to collect my belongings was " I hope this has given you the kick up the arse you needed"..........I just sat there and thought I didnt need a kick up the arse I just needed help and support and time to get better. I just dont get that we had been together for 7 years in total before all this and everything was great. is this making any sense? I suppose its a question I will never know the answer to as to why she felt she had to walk away.

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Darren, From what I've heard Keppra can cause anger issues...Perhaps that is why they put you back on Tegratol. Call the doctor that prescribed it and ask him.

Reading what you've written, it seems quite a bit like what I went through the first 2 years. You are only in the beginning of your recovery, so I believe that you will see things get better, it just takes time.

Yes, people just don't understand what we are going through (not even the doctors)...they cannot see a scare in our brains..so they just don't understand...BUT, your friends here on the Network DO!

Stay Strong and Positive....Keep fighting for your recovery!

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thanks louisa,

I was the same on tegratol but they think its that thats giving me the suicidal thoughts and thinking of death a lot , so they switched me to the keppra saying it may solve it that was three weeks ago.

now there saying that they want me to come off the keppra and clobazam and go back to tegratol but I told them the tegratol has not agreed with me since day one it constantly makes me feel on an other planet and like a walking zombie.

my neuro pshychiatrist said yesterday that all the anti seizure drugs can have these sorts of side effects but he said " its either take the medication and have the side effects or come of it all together and risk a seizure" I said well I cant win then. I told him I just feel like taking the whole lot and throwing them in the bin as they just cant come to any decsion on what is the best and they need to do these assesments to find out if there is more going on with my brain than what is apparent.

my neurologist was meant to call me today to discuss with me what the best plan of action is and as yet still hasnt.

the neuro psychologist said I am still in the recovery process and there is still healing to be done in the brain and they cant give a time scale on it as every one is different.

I am so glad I have this site and people on here to turn to as I am sure if i didnt I would not be here now talking to you all , its been that bad.

xx

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You have all of us, Darren...we all are or have had the issues you are experiencing. I've been on my anti-seizure med for 6 years. In the beginning, I felt like you are feeling, but as time when on things got much better....now I'm used to it and don't well.

It seems you have a good neuro Psych doctor...stick with him.

Call your neurologist back and tell them you are waiting to hear from him...The problem is that doctors are so busy they can't meet our expectations at all times.

Hang in there! Things will get better..

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Thanks louisa,

Doing my best to hang in here, just hoping they can sort it all out sooner rather than later and thank you for your support x

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Darren,
It pleases me to see so many fellow members reaching out to let you know you're not alone. Unfortunately, your story is not uncommon. All of the things you talk about are common with a brain injury, particularly witha frontal lobe injury. I think it's great that you have seen a neuropsychiatrist. They should be a great help to you. The cognitive test is long (about 3-4 hours) but will give them a better understanding of what your specific difficulties are and where you need the most help. They can also understand the depression someone with a brain injury can experience. Please talk to them about your depression. They can help. Medication is a option but not necessarily the only one. Bottom line is this: You do not have to feel this way!!

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I have always had vivid dreams. Seems they have gotten worse since I had my first seizure which led to the discovery of my AVM. I have actually awoken from one of these "dreams" and actually thought that it had really happened. It will take me a second or two to realize that it did not happen. Some of them are frustating, like I am trying to get somewhere and can't. Others are terifying. My husband wakes me up when I start mumbling or screaming. At other times I have dreams that I am with deceased relatives just like they were still here. I have actually felt sad when I realized that it was not real.

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thanks trish,

I know I am not alone as I have seen other on here say the same sorts of things, I just wish all of you were closer so we could meet and talk about these things that happen to us in the uk there is hardly anything and trying to get the help is a nightmare.

3-4 hours for a test OMG I gave up after 5 questions today while doing an internet one :-(.

I have told all the people I have spoken to about how I feel and what I am going through but getting the help is so hard and takes so long here its ridiculous its not just me I worry about but how many other are out there that are going through the same things and are not getting the help.

I am so glad people on here can understand what I have to deal with day in day out I really dont know what I would do without you all xx

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Darren, I know...I had my cognitive test very, very early in my recovery and I really struggled with the length of the time it took...BUT it is very important to have that test.

You can do it!