@Lyannete1991 Welcome Lyannette So glad you found the group. My story started out different I first had 5 blood clots in my brain and had a cvst stroke and went into a coma. I too had lots of trouble like your husband for probably 2 to 3 months where my short term memory was really bad.
I was paralyzed on my left side and could barely talk I was 43 and in great shape. Then about 6 months later I developed an avm called a DAVF .
At first I really needed a lot of sleep and my brain felt thirsty. It wasnt like I didnt want to talk it actually hurt to form words - I dont know if you have ever weight trained but when you do and you know what you max weight to lift is and that what it felt like to say one word. And often it would be the wrong word.
During my angio/embolism I had another small stroke and short story was able to write down that I was terrible pain. You might want to try giving your husband a pen and paper.
I was really confused when I was in the hospital ( Stanford) esp cause its a teaching hospital and there was so many new drs and no one was talking to me. Then I was not retaining anything.
My husband is about 10 years older than me and has high bp and cholesterol - I think it was about 3rd week home that I finally said wait I had a stroke before you? I have low bp and great cholesterol .
Nothing made sense, I had brain damage to my basal ganglia and my thalamus died.
I did recover and get my movement back but I am weaker on that side and I do have something called Centralized pain syndrome from it.
I did a lot of physical therapy at Stanford and my husband switched us to a high protein high fat diet.
I could not watch reg tv or read and I did not want to talk on the phone or really have visitors at first… I honestly felt like a huge burden at first. But I have never been one to feel sorry for myself as I know there is always someone worse off then me. I accepted my new self and strive each day to get back to my old self. Its a daily task for me to continue to work on my balance and strength. Its been ten years.
Once I could start to walk my husband gave me a simple task of getting the mail which was a good walk to our mail box even on Sundays. Also I would not let him do the laundry.
One drug that really helped my nausea was zofran. I was like why
didnt my drs give this to before ? I had terrible migraines before and they got worse post stroke. zofran melts under your tongue and works in about 30 minutes. Then if I need something stronger I have phenergan, it makes me sleepy. There is also a patch that you can wear behind your ear called scopolamine that lasts 3-4 days. Another drug I have had in the hospital is Reglan that works for 24 hrs.
Dont be afraid to ask the drs for meds to help with nausea. When your head hurts you really dont want to be vomitting.
Caregiving is tough, I have been both the patient and the caregiver.
You are correct your husband is in there fighting its like a thick fog.
One thing is we learned a lot when we got my medical records. I think drs think they tell us stuff but its all written in the notes! So now I always pick up my medical records.
My pain neuro tells me its important for us to start our day with protein and to keep a strict sleep schedule
She also told me that if the brain continues to have pain then it will think its normal and then it will have it for the rest of your life. So that scared me into trying botox. I have literally tried every shot at the Stanford pain clinic even some up my nose which I highly recommend NOT doing.
Once he is able to interact more both of you should learn some sign language like for pain .
My husband would take me to Baskin Robbins for ice cream after Physical Therapy as a reward .
You two will get through this. We are here for you.
@Lyannete1991 Welcome Lyannette So glad you found the group. My story started out different I first had 5 blood clots in my brain and had a cvst stroke and went into a coma. I too had lots of trouble like your husband for probably 2 to 3 months where my short term memory was really bad.
Hello Angela. Thank you for sharing your story with me. I am glad to hear you have come a long way and are continuing to improve! Some of the things I notice with my husband is he tends to repeat a lot of what I say. If I ask ‘’how do you feel’’ he would answer ‘’how do you feel’’ if I ask ‘are you dizzy’’ his answer is ‘’dizzy’’. I was told this is normal as he wants to say an answer but cannot say the words. Did that happen? Did you remember everything happening? He does not question where we are or understand where we are. After each PT, OT, ST I ask him what did he do and he barely remembers. It is a challenge as I want to do everything for him but the fact he cannot really tell me what’s going on makes it hard. I know I have been told the brain heals, it’s a slow process.
For nausea he has been in Zoltan, every 6 hours. Is not working that well on him anymore. They also started him on clonazepam, which makes him sleepy at night but is said to help with nausea. Today is day 3, hoping for good outcome.
I am staying strong and hoping for a great recovery. I am so glad I found this group, as I feel there is only so much google can tell us and it’s hard speaking to others who don’t really understand.
Hello, thank you so much for this message. So glad to have found this group although these are tough circumstances. Also, thank you for sharing you story and I am glad to hear you have improved! It is definitely a hard process. 8 weeks is a short time but feels like forever to us caregivers. Luckily he is able to move all extremities although has a lot of difficulties with his balance and coordination, stiffness in neck, head, short term memory problems, and does not retain information. I know this is a marathon not a sprint. Will continue doing all I am for him and his recovery.
Hi Lyannete, my story is very similar to your husband’s. I’ll share my experiences as well as my tips and what things are like now. I had a AVM rupture in my cerebellum 8 years ago at the age of 19. Eventually I was stable enough to have surgery to remove it and have been recovering since. The side effects for me in the first few months were tough and very similar to those associated with stroke plus some. I had to learn to walk again because my balance was so terrible and I was constantly dizzy. The entire right side of my body had no coordination, the worst of which was my right hand. The nausea and pain was as very intense and no combination of medications helped me. If I moved to suddenly it was a guarantee that I when throw up or at least dry heave. I refused a peg tube and found a way to eat (I’ll explain what worked shortly). My vision was also a challenge, it was almost like I was looking through a straw. My words were coming out slurred or I was not able to say what I was trying to say. My memory was a bit fuzzy all the time. I would listen to someone speaking, understand it, but would have trouble remembering the specifics at a later point even though I knew the conversation happened. Sleep was definitely out the window due to all the pain. I did OT, PT, and ST in the hospital and did outpatient PT and OT once i got out as I felt recovering at home would work better for me (I was over getting interrupted every 30 minutes by hospital staff when I was desperately trying to sleep).
Here’s some things that worked for me. For nausea I learned that moving, heat, eating a normal size meal, and hot food triggered me to throw up. To sit up in my bed I’d have to roll over slowly to one side then wait a few minutes before moving again. Then I’d push myself up a little bit with one arm then wait a few more minutes. Then finally get into a seated position sitting Indian style. I’d wait a few more minutes to make sure I didn’t throw up then I’d start with one or two bites before I would have to wait 5-10 minutes before trying a little more. The key for me was to try to eat painstakingly slow, eat more of a snack size portion, and it always had to be cold food. Hot or room temperature food always made me sick. I did best with frozen yogurt, fruit, or veggies. Also keeping my body, especially my face cool while trying to eat helped. I also had a little relief with Japanese ginger chews (candy). They taste gross but did help a little bit.
With the memory issues I had, it was easy to get frustrated. I avoided talking to anyone when possible. 1. Because I was embarrassed that I couldn’t remember. 2. Because it felt like every word I spoke was being judged. Almost like they were trying to determine how damaged I was. 3. Because I could understand what was being said but I was not able to communicate like I wanted to, to the point where people didn’t know if I could understand. I was also frustrated with what I had lost and the fact I couldn’t do things like I used to. If I didn’t talk much to anyone I didn’t have a conversation to risk forgetting. It helped me when someone would extend grace if I couldn’t quite remember and tell me what they said without making it a big deal that I couldn’t recall it. Asking yes or no questions of me was much easier than having to explain. Being asked how I was feeling or what my pain level was on a scale from 1-10 got to be the most irritating questions that would cause me to shut the world out. I wanted to talk about anything other than what I was dealing with. I also wouldn’t remember much about a previous day and would have trouble remembering the day of the week.
I’m over 8 years out from my AVM and for me things did improve. It’s slow. It feels like you are no better but when you look back you realize how far you have come. I can’t say I’m the same person I was before the AVM. I have a new normal and still struggle but it could have been so much worse. The headache I had lasted for years, I almost always have one or a migraine in varying degrees. I’m so used to it though I don’t really think about it and can still function. Short term memory loss is still there but I would classify it as mild now. I’ll be in church listening to the sermon intently and a hour later I can’t recall the main point. Or someone will update me on their life and 30 minutes after I can’t seem to remember specifics. It is very unpredictable, it is not all the time though. Nausea is not all the time just occasionally. I do have times where I start to eat something and I immediately get nauseous for no reason. Not to the point I throw up though. If I’m in pain or get too hot it brings it on. I stick to cold food and it goes away. I have to be careful with the heat. If it is 80 degrees or hotter I can’t be outside for more than a few minutes. The heat brings on nausea, balance loss, a headache, memory loss, and fatigue. After about 10-15 minutes I start to black out or start to fall asleep. If I get too tired or stressed all the side effects start to sneak back in. Sometimes I do over do it but I understand my limitations for the most part. My balance and coordination came back slowly although I still struggle with my right hand. It certainly doesn’t tremor like it used to. I can do some things with it if I take it slowly. Having people around you that know your struggles yet don’t treat you like you are damaged goods or don’t seem to be be bothered by your limits helps a lot. I am able to hold down a full time job but I am quite exhausted after work and struggle to do anything else. I do not have any of the hobbies I did before. When I write I have difficulty spelling (because I can’t remember how to spell a word at that moment) and I forget to write all the words in my mind to make up the sentence. I usually forget to put 2-3 words in the sentence. Definitely have to proofread like crazy. I hope this helps you and your husband! Hang in there and take it one day at a time.
@Lyannete1991, my heart goes out to you. I had an AVM bleed in my cerebellum five years ago. I had memory problems on the order of what most of us experienced, more from the stress, medication, frustration, and distraction than from direct damage to my brain. As things calmed down around me and in me, that improved quite dramatically. I truly hope you see progress soon on that front.
My worst effects were to my balance and coordination. I felt so much frustration; I can relate to much of what has been written here. Speaking clearly was such a challenge that I’d just not talk to people if I could avoid it. Especially at first, I thought that I would never be able to walk or move around in the world again, at least not normally. My brain knew what to do, and my body knew what to do, but they didn’t want to work together at all.
The nausea was the worst. As time went on I could measure my progress by how long it would take before I threw up. It was pretty constant for quite a while; at first just opening my eyes was so disorienting I’d start vomiting. Gradually, I was able to do more although sometimes the slightest movement set me off again. In fact, many of the exercises I was given to use at home between sessions were to repeat certain motions until I threw up. Over the course of a few months I got to the point where I felt like I was normal more often than not. I still have issues if I tilt my head too quickly to look under the bed or into the back of a cabinet.
I wore a scopolamine patch behind my ear for a long time, and took Zofran too. They may have given me phenergan in the hospital too, although I’m sure I begged them not to - before Zofran, I’d sometimes be given that during bad migraines and honestly I think I’d rather have the vomiting. It makes me feel like I’ve been hit by a truck.
I had an “aha!” moment after an eye doctor’s appointment a couple of years later. For the longest time after the stroke, light sources, at night especially ,would emanate rays that looked something like a hand as far as the spacing. If you imagine rays shooting out from the thumb and fingers, that’s what I’d see. I’d also see a cluster of images superimposed, so a traffic light or a headlight would look like a cluster of grapes instead of a circle. Well, I had the same effect with the rays and the cluster the evening after my eyes had been dilated at the eye doctor. I mentioned this to my husband, puzzled because I couldn’t figure out why it was such a similar effect. He reminded me that I was on that scopolamine patch for a long time - and it was dilating my eyes.
Anyway, I’m wishing you and your husband the best. My recovery was in fits and starts but it did get better over time. My PTs were adamant that I work as much as possible so that my brain would rewire as I healed. I have to credit being relatively young to helping me out with that, I simply had a relatively active life to lead and still had to be a parent. Even months and years later, when I thought I was “done” with any changes, I’d have sudden little breakthroughs where I’d realize I could do something I couldn’t before, standing on one foot, doing a little tango with my spouse, that kind of thing. Earlier it was things like brushing my teeth without getting toothpaste all over my face, picking something up off the floor, signing my name.
I know my situation was not a dire as your husbands, and I had a much smoother recovery although it felt dramatic enough to me as I was going through it. The only advice I have is to be patient; everything seemed to take a million times longer for me, and that included speaking and eating. The people around me didn’t always seem to remember that some of the most minor things were incredibly difficult, because some of the more major-looking things weren’t.
Once again, wishing you the best. Your husband has a great advocate in you, and that’s a huge, huge advantage for him.
Wow! You two are going through rather a lot! However, it is very early days.
I don’t have a similar story to tell as my DAVF was found before bursting. However, there was a wonderful documentary on TV here a couple of years ago about a guy who had a massive stroke and his recovery from it. It took a long time (4 years) but the contrast between his initial condition and the degree of recovery he achieved is, I think, the most encouraging. It’s a hard film to watch – especially for you – but if it is ever helpful to see what perseverance can do, it may be helpful. My Amazing Brain - BBC Horizon - #2 by DickD
I’m sure your husband will get back to a much better position and he has youth on his side.
I hope this helps,
Sorry to hear about your husband, I hope everything goes well. I was diagnosed with an AVM back in March this year in the right thalamus. I started getting bad headaches with double vision , I almost blacked out a few days before I got double vision. I spent a few days in the hospital and was told I had a hematoma with no present bleeding where my AVM was. My main symptoms are frequent migraines and tiredness in the head. I’m scheduled for gamma knife this September. I hope the best for your husband.
Hello Brianna. Thank you so much for sharing your story. I am so sorry you had to go through this but I am glad to hear you have been healing well. This gives me a lot of hope that there are better days ahead. Some days are better than others for him when it comes to memory and the nausea is constant when he is doing OT or PT. Today was a rest day at the rehab center and it was the first day he did not throw up. I know this will be a long process and I am here supporting him any way that I can. Do you remember the moment the incident happen? I do wonder if he remembers that moment or how much he does. He understands he had a bleed now but doesn’t question how or when. He is also starting to get very sentimental. Since last night he will randomly start crying when we are FaceTiming family. When asked why he mentions he misses them or that he is happy they have a good life. It is very emotional but I know he will be okay.
Hello. Thank you so much for your message and for the recommendation. I will definitely be checking it out. I know it will take time but I am hoping for his recovery. He is young and strong!
Hello elisabet Thank you so much for sharing your story. I am glad to hear you have recovered. Although unfortunate, I am glad I found this group with individuals who can relate to what we are going through. Some days are better with his short term memory. He does not ask how or when this happened, I wonder up to what he remembers happening. He does also have trouble with his vision but cannot fully explain it. Sometimes he says it’s double vision, others that it’s blurry. Turning his neck left and right also causes him pain and it is hard to do. I know a long road lies ahead of us but he is young, strong and extremely active. We will get through it.
Hello Matt. Thank you so much for your message and wishes. Wishing you all the best ! You will be fine. Please keep us posted on your progress. We will be praying for you !
Hi Lyannete, I do remember some of the incident. I was in the car on my way home from church and dinner when all the sudden I had a horrible headache. It was like someone flipped a switch on. The headache started growing in intensity and I was also getting very nauseous. 15 minutes later I arrived at home thinking I was having an allergic reaction to something I ate and knew I was going to throw up. About 15 minutes into throwing up with no improvement and worsening pain my parents decided I needed help. I remember my father carrying me to the car and laying me on the back seat. 5 minutes later we were at the hospital. My father carried me in, I remember throwing up in his arms, and my vision started going. From that point on it was only small flashes of what was going on. Laying on a hospital bed in horrid pain, being taken on the roof to the helipad, the bright lights of the skyscrapers downtown on the care flight, nurses running, etc. Then I remember waking up in the hospital the next morning. I didn’t know what happened other than something serious and I was in a different hospital. Still had a lot of pain, nausea, and couldn’t really see that I was in ICU. It also took my a minute to realize I couldn’t control my right side, communicating was difficult, and I wasn’t going to be able to walk. They thought I had a brain aneurysm burst but honestly I don’t remember how or when they figured out it was an AVM and told me. I do not remember the testing they did that night. They almost had to do emergency surgery and put in a drain but I can not remember what stopped them from doing so. Personally, I would have preferred it if I didn’t remember anything from that night and some of the days afterwards. There are memories I wish I didn’t have but that would probably be harder for my family. For me I have never questioned why or how, it won’t change anything, and I’d rather not know some of the details. I did and still do ask what now though.
As for emotions I was told that do to the location my AVM it could effect my emotions in ways that were not normal for me and it did. I am a pretty even tempered person, sometimes too much so. I was/am not a crier, one to get angry, or be sentimental. But I did have my emotions going a bit crazy for me. Part of it was the lack or absence of sleep. The only crying I had was out of exhaustion or frustration. Instead I was irritated and frustrated a lot which was completely out of character for me. I even yelled “ leave me alone” at my father one day which I never dreamed I’d do. Definitely not my brightest moment. This emotional sensitivity lasted several months but definitely went back to normal. I did not communicate with many family members or friends when I was in the hospital because I was embarrassed to be seen like I was. If I had though I feel like I was sensitive enough to cry over something that normally would not have been something to cry over.
This will get better! My thoughts and prayers are with you both!
Hello @Lyannete1991 I will have to ask my husband tomorrow about if I was repeating what he would say. I honestly dont recall much other than being in a great deal of pain, being very tired and when I did speak it being so hard to get a word out and often the wrong word (aphasia) I would be frustrated but due to the stroke I had no idea I was not showing an expression on my face until my primary mentioned it. I wasnt even looking at myself in the mirror when my husband was helping me bath etc.
There is a great book by Oliver Sacks a dr who has since passed called The Man Who Mistook His Wife for a Hat: and Other Clinical Tales- I read it in High School and talks about the how when the brain is damaged how we perceive or dont perceive the outside world. Its a bunch of stories of different cases.
I do recall being in what I zombie mode and going to all my appts PT OT ST , they held off PT for awhile which was good cause I lost my ability to swear but I got it back during my second stroke
I had no sense of direction and I remember one day the OT wanted me to go down to the main lobby of Stanford and use the map and go to a different area of Stanford that I had no been to and then come back with my husband . I could not follow the simple the map. Then he helped me get to the new area but then I could not figure out how to get back even though it was simple.
We are not sure if this had anything to with my improving but once my husband had read about healing qualities of coconut oil he started to add 1tsp of coconut oil into my tea or coffee a day for a few weeks then after boosted it up to 2 tsp throughout the day and again for a few weeks then we got up to 3 tsp throughout the day . Then I started to improve. He also switched to Kerry Gold Butter which is Irish cows which are grass fed cows. I was afraid my cholesterol was going to be sky high but when I went to the dr they said your numbers are great keep doing whatever you are doing.
Has he had any seizures ? clonazepam or KLONOPIN can have bad side effects when people go off it- I have heard of a few people in other support groups that have had suicidal issues when they have been taking off it . But maybe he is a small dosage.
He is in there - its like walking through a really thick fog of soup trying to communicate. The neurons ju.st wont fire correctly right now. Do you know what parts of his brain were damage? Oh and also its very common after any type of stroke for us to be more emotional. Also to have PTSD. I never cried about anything except about animals and now If there is a show about someone dying I cry.
Hello Lyanette and Pedro
Wow you’re in a hole now. It’s likely to be a rough and rocky road to a new normal.
Yes memory and balance and coordination can all improve but it will take time. Imagine you really smashed a car up and then needed to repair each part before reconnecting it. That’s what needs to happen with Pedro.
Depending on the bleed some parts of his brain could be dead and other parts will start to compensate.
My balance recovered so I could ride a bicycle but I can’t walk in a straight line. I regularly bump into door frames because my brain suddenly switches off the navigation system.
I took 5 years to go from ICU to a regular life, then 20 years of my new normal and sadly I’m going backwards now. Reduced coordination slow memory etc.
Try not to get frustrated or rush the recovery.
This is a good analogy. There’s a lot of re-learning that it sounds like Pedro will need to do. It’s not impossible but it does take therapy (including things like speech and language therapy) and time.
What your going through reminds me so much of when My AVM ruptured, down to your detailed description of those events… I wish you and your husband the very best. Time does help to to heal, but please remember the need for you to take care of yourself also. Best wishes. Les
I’m so sorry for what your husband and you are going through. Reading your story made me emotional because it is so similar to my daughter’s story which started 4.5 years ago. Her AVM was located in her right cerebellum. The doctors called the area the posterior fossa.
I’m going to paste below what I wrote on a Facebook page I’m part of for parents of kids with an AVM or aneurysm. I wrote it exactly 1 month after my daughter’s AVM rupture which occurred on January 5, 2017. This day is now a dividing line in our lives.
“I’m a new member here and would like to share my daughter’s story. Her name is Kathleen but we usually call her Katie. She turned 10 in the hospital on January 16.
On January 5 at about 5:15 pm her AVM ruptured.
Her bleed came with no warning and everything progressed very rapidly. Ten minutes after she cried out that her head hurt she was losing consciousness and 15 minutes after that once she was with the paramedics; she couldn’t breathe. They couldn’t take her straight to our local children’s hospital because she had to be intubated at the closest hospital first. Once we got to the pediatric hospital she had a CT right away and was on the operating table 30 minutes later.
Her neurosurgeon and primary neurologist are really lovely and have told us that us that she would never have survived if she were an adult because the bleed was in their words “catastrophic”. However, based on their examinations and her latest MRI, they also have said she stands a chance to make a good recovery because she received medical attention so quickly.
That has given us a great deal of hope, but we also know that no one really knows for sure. The only thing they’ll say for certain is that her recovery will be very slow.
Katie has been opening her eyes for longer and longer, sometimes up to an hour, but she’s not fully conscious. I think she first opened her eyes about 8 days after her craniotomy. At first she just stared ahead and couldn’t track. Now she appears to focus and can move both eyes to look at an object or face. It’s so reassuring! She is for sure listening as she can follow simple commands such as opening or closing her eyes. We talk to her a lot when she’s “awake”-sometimes she’s sort of agitated but eyes closed. We’ve read to her and a few times a day I play her favourite music. Her physiotherapists are outstanding and we look forward to their daily visits.
Two weeks in she had to have a tracheostomy and a Gtube put in. She could breathe without the breathing tube but she couldn’t effectively clear her secretions. After those operations, they kept her heavily sedated for 4.5 days. Before the trach and now after, she has had episodes of neurostorming. Her heart races, she’s sweaty and her blood pressure gets very high. Sometimes repositioning or soothing will help but other times she is given Ativan to settle. Mostly at night.
Right now I worry that her agitation is partially caused by her increasing awareness and wondering where she is and why. I’ve given her a brief explanation a few times but have no idea what she’s processed.
Her AVM was on the cerebellum but swelling was on the brain stem but all other areas appear unaffected.
Our next step is an angiogram probably next week and we’re supposed to leave the PICU today.
This seems like a great network for support and information.”
My daughter did not speak at all for almost 6 months following the stroke. She was basically paralyzed for 3 months and then slowly regained the ability to move her limbs and hands. She was in a state of semi-consciousness until 5 months post when she started to spell out words by pointing to a laminated keyboard page. She started eating by mouth around the same time. She also vomited ALL THE TIME and had to be rehydrated by IV about 4 times when she couldn’t even keep pedialyte down.
Her trach was removed after 3 months and that solved a good deal of her nausea and vomiting issues. We worked very hard to get her to drink enough and the Gtube was removed after 8 months. She did not take any independent steps until her 9th month of recovery.
I made this video about the first two years of her recovery. Considering how severe her bleed was she has made a fantastic recovery and has surpassed everyone’s expectations. I hope the video gives you hope.
(Also it’s YouTube who turned off the comment section because the video is about a child.)
Oh, I thought I’d add that my daughter has very few memories of the first 5 months of her recovery. Once she could communicate we realized she had no idea how much time had passed. She could not believe she had turned 10 for example because she’d missed her birthday. She also let us know that she had double vision which helped us understand a lot of the behaviours she’d been showing such as not actually watching tv but only listening and not being able to use the sight gaze technology to communicate with us. When she did start talking it was very laboured and she would tire very easily. Like your husband it was minimal talking.
I know it feels like forever but at only 2 months post rupture you are in the infancy stage of Pedro’s recovery. Please don’t hesitate to ask anything you think of.
Hello! Wow thank you so much for sharing this story. What a beautiful video, definitely made me cry. I am so happy to see your daughters progression and how well she has recuperated! The mind is such a mystery and it so amazing how it can regenerate. This has made me very hopeful. I know this is a long road and we will have a lot of ups and downs, but I know he will be okay. This will take a lot of therapies, medications and patience but we will do it. We are set to leave in patient rehab end of next week and start outpatient rehab. I have been told the short term memory and cognition usually takes the longest but they are seeing moves in the right direction.
Thank you for sharing all this and I am so glad I found this page where we can speak about our similar experiences.
Hello, thank you so much. I am trying my best to care for me. I know he needs me the most now.
Yes it does. It will be a long road.