that is exactly how it is with me I have actually just cried at reading this I must have missed it earlier , I am so glad I am not alone I keep telling people this and they look at me gone out, I wake the same way mumbleing or screaming and scared , I dream the same sorts of things, the other day I dreamed my cousin was still here when she died from a brain haemorrhage 5 years ago, also I dreamt that I was running to my car that I can no longer drive and I fell and banged all the side of my head and it was bleeding , and they are so vivid it frightens me when I wake from them and it takes time to realise they were a dream and not real , but hten I get this mixed up realality that what is real and what is not. x x
thats what my Neuro rehab psychologist said he didnt tell me how long it would take he just said its important to do it to get an understanding of cognitive ability.
I will do my best as I know it has to be done, if only people would have said to me that the surgery would be the easy part of all this...... x x
Hi Darren,
Please know that you are not alone in your struggles. I suffered a bleed almost 2 years ago from a ruptured aneurysm and still have an active although asymptomatic AVM. After I had surgery for my aneurysm and was released from the hospital I felt like my world had fallen apart. I was scared to be alone, I was afraid of my own shadow and I felt like I did not know how to enjoy life anymore. It took about a tear before I started to feel normal again emotionally. Please know that it does get better. At the moment you probably feel like the world is caving in but time heals all wounds. My doc said the same thing to me about a month after surgery and I didnāt believe him. But fast forward almost two years later and I can tell you that it truly does!
Hi Darren, I have just found this site, and another member suggested your post. I'm 48 and had a brain hemorrhage on Christmas Eve. Since then I have had scans and 2 angiograms, and they have found an AVM near the right thalamus. After reading your post, I cried, because I too have had these neuro symptoms that are very real to me, but looking at me you wouldn't really know there's much wrong with me. My left lateral arm and leg are weak, and become weaker as the day goes on, and I have some slight numbness in the bottom of my left foot. So, I walk like I'm a little drunk. I have mental and physical fatigue that gets worse as the day goes on as well. Last week I was disappointed that the embolization couldn't be done to fix the AVM. But, I understand what you mean about the "New Normal". I too have the fatigue, being sleepy, difficulty with too much commotion and stress and socializing, and irritability. At this point I'm waiting to find out what my best option will be between surgical removal and radiation. Those are both scary options that cause even more stress. But, it is good to know that my symptoms are not abnormal for what I've been through, and I hope it helps you to know the same thing. All we can do is take one day at a time. I hope you soon get to whatever your new normal is and can come to accept it gracefully. Thinking of you.
You are not alone! But you know that by now. I am glad you have been directed to neuro-psych. Sorry it took so long for that. Itās very common for folks to have the same issues you mentioned.
My biggest challanges following my brain bleed and surgery to remove my AVM were dealing with noise and activity around me. I did not answer the phone for months, had a hard time staying āon taskā and ā¦ well, the bottom line is that time took care of that. It took close to a year before I felt ānormalā again.
I just celebrated my 7th anniversary of surviving my large cerebral hemorrhage! Hang in there and take it one day at a time!
what you have said rings very true, emotionally I am all over the place, up one min and down in a black whole the next , uncontrollable crying is driving me mad I can just start crying for know reason what so ever, scared of being alone in case I have a seizure and no one is around to get a paramedic to me, hate getting into bed only to sit and think could tonight be the night it happens its frightening , but it is nice to know that i am not alone in these things. x x
all the things you talk about sound so familiar, I totally understand the commotion side as I suffered with that after my seizures , I would not want to go out the door in case I was going to have what I can only describe as "brain black out" when there was to much going on I would have to stop and put my fingers in my ears and close my eyes until my brain caught up again kind of like waiting on a slow computer to do what you want it to if that makes any sense?
I went to an event once it was a marathon for my then mother in law she was running in it , I was stood at the finish line waiting on her to do the final part of the run, I was surrounded by people that were screaming and cheering on there runners, there was a person talking on the PA, and there was music going and just so much going on , I had to turn to my wife and say, I have to go over there and stand in the middle of that field where it was quite as my brain just was not dealing with it at all I was getting stressed with the situation and not being able to cope with it, I just asked my wife to come and get me when she was on the way round the last part so I could be there to cheer her mum across the line, where as before the seizures all this commotion would not have caused any issues, it was so frustrating , I am now much better with lots going on and can cope with it now but it has taken time , I still get sleepy and fatigued very easily though especially if there is a lot of information to take in, there just comes a point where my brain just says "NO" im not taking any more in now, which again is still frustrating me as before all this I could soak up information like a sponge.
Confusion I had pretty much up until February this year , I would find myself forgetting things very easily, even cooking a meal became stressful where I have always been a pretty good cook and could handle cooking a meal but it became like I had to totally concentrate on what I was doing and any interruptions I would become panicked and irritable. One day I was stood there cooking , Chips, Steak and Peas. I cooked the steak and put it on the plate and cooked the chips and put them on the plate, and thats when my mind just went totally blank , even though I was looking at the peas in the pan and looking at the plates with the chips and steak on , my brain just would not register what I had to do next and it wasn't until my wife just said "PEAS" it then just clicked what I had to do "what was all that about" I thought.
other things that would happen to me that were kind of like a form of OCD, one day I went to get a biscuit there was chocolate biscuits and custard cream biscuits in the tub , and for no reason what so ever it drove me crazy that they were all mixed up and I actually sat there and had to line them all up in order? again to this day I can not explain what that was about but it was upsetting me at the time.
Its a horrible feeling to sit there and think "why" am I doing these things am I going crazy is this going to be like this forever at the time I just did not know , thank god that I have not any more of those episodes in a while now.
I if you read my post above that I just replied to I think that describes the same things as what you are saying about staying on task , noise and activity, does anyone know why this actually happens I have seen a youtube video on what is called "Flooding" of the brain do you think this is what we all experience with these types of injury's?
Had a phone call from my neurologist this morning they are now asking me to increase the dose of keppra over the next 2 weeks to 500mg twice daily once in the morning and once at night and also remove the clobazam all together when I get to the correct dose of the drug.
Still waiting on my Neuro Psychologist to get back to me as to the dates for the cognitive tests and also with a psychological and neurological assessment.
Just wish all this Support would have been in place from July last year and not left until now before they start helping.
I am hoping so dancermom, it just so great to know I have this site to turn to and that what is happening and has happened to me has happened to others and they can understand what is going on , its hard to explain to everyday man if you like what we go through when halve the time they just look at us gone out, its one of those things that unless you have actually been where we are or have been you just cant understand it x x
We all feel this way. And the hardest part is that it never goes away. It will be 17 years for me in July since I had my AVM (I was 10) and the biggest problem I have encountered is finding understanding people. Most of the time I look and act so normal, the people around me forget that my brain is a little messed up. Emotions are bigger, change is scarier, and life is just... a little harder. I feel like I should be so far removed from the situation, but I'm not- I (we all) live it everyday! I'm sorry for all of your hardship. Someone once told me, "Things will get better, I promise." and they were right
Darren, your doctorās response that all anti seizure meds have these symptoms may be correct but there are ways to mitigate them. My daughter was put on Keppra and the she suffered from depression and mood swings. Her doctor switched her to a different version of Keppra that was sort of a time release which did diminish the symptoms. Has your doctor indicated if you must stay on anti seizure meds indefinitely? My daughter was put on them more as a preventative and her neuro said she could wean off them which she has done. Her bleed/craniotomy was 5 years ago. She had most of your other symptoms as well but over time these diminished too. I know that each person will have a unique experience and recovery but I hope you take comfort knowing that people do recover. They may not be exactly like before but things like noise confusion etc do go away,
'POWER FROM WITHIN' helps me deal with lots of my AVM 'garbage'!
Something else: SEARCH and FOCUS on any/all POSITIVE that you see in yourself!!
I have lived w/my AVM for over 3 decades, yet I am 52. I was SO, SO scared in the beginning when I found out about it, but since then, thru out the craziness of it, I would not change ANYTHING!
It will get better it sucks at first cuz no one knows what a AVM is at all and when you tell them they go what it like talking to a wall of bricks at some points but this is the new normal to say and it will get better I was 7 when I had my AVM I didnāt even know what that was it was just something holding me back from playing with the other kids and it was just really tough cuz I didnāt fit in but it gets better I got use to it I wonāt lie to you thereās days where you go why other days you just say it me and no one can say anything else
I feel for you! When my AVM ruptured, I had to focus on my health first of all. I had 2 teens at home, and was sent to rehab 5.5 hours away for 4 months. I needed to focus on getting better before I could deal with "life". Maybe learning some relaxation techniques will help. I've suffered from panic attacks as well and those symptoms are very real. Xanax has really helped but I only take when absolutely necessary, which would be 4 times in 2 years. I can usually calm myself down by going outside and spending time with my pets. I'm sorry your life has thrown curve balls at you. It has for us all and you can do it. Take one day at a time.
Hi Darren, I read through your posting and then the supportive responses. I hope the responses have helped you as you have helped others through your descriptions of your challenges. I will be celebrating the 3rd anniversary of my burst in May and I have experienced many of your challenges but the passage of time has helped and I continue to see improvement. Actually, I have become friends with another member and she is 12 years past her injury and continues to notice improvement which encourages me. God bless you, Darren, and please continue to post here as needed.
Thank you everyone for the supportive comments it is such an overwhelming feeling to know we are not alone with this.
Update.
Had a letter there asking for me to have another MRI now on 23rd may and also from what I can gather from the letter they seem to think I could be having some sort of secondary seizureās ābut I donāt feel like Iām having seizuresā I have woken up a couple of times in some strange positions that I donāt know how I got there other week I woke up actually sitting on the side of my bed as if I had just sat on it , but I know I was laying down when I fell asleep? Then this morning I woke up and I was laying on the floor next to my bed which again is odd I donāt think I have had a seizure as I feel OK apart from the side of my head where I had the op is aching again. It seems to be happening since they have started doing my change over of meds from tegratol to keppra and Iām still increasing the keppra gradually ATM.got my neuro psychotherapist coming tomorrow with my neuro rehabilitation nurse and going to see what they sat about it all as it also says in letter that avm has not been confirmed as cleared yet, but I am sure my neuro surgeon said it was gone. Iām getting a little confused with it all now to be honest. X x
Hi Darren, Your not alone with your feelings and its great that we all have this site for information and support !. I think its all a matter of being strong willed and being thankfull for being alive after such a serious operation. Its hardest for me at night when I'm in bed and trying to sleep as thats when your mind starts "wondering" I think about what "could" happen during my upcoming surgery. But I'm trying to be positive and believe that having a strong positive attitude can help ..... but then you always still feel your just putting on a brave face for others. I have read from here about people that have issues accessing emotional areas of the mind since surgery. I hope things go smoother and get better for you, Just keep reminding yourself that your AVM Free and now healthy, These are things that should keep you going ... its just Rubbish that these things happen to people :( . Wishing you health and happiness for the future. Take care
Thank you for your kind words and thoughts Martin,
Just waiting on my rehab team to arrive today and hopefully they can give me some answers this week and help me understand what is going on with everything.