What is the new normal?

Hello. I’m happy to have found this group and be able to hear other people stories and find out more about having and treating my aneurysm. I’m still trying to figure out what’s normal for me. I am three weeks post aneurysm repair. I went to the ER because I was having symptoms of not being able to read or speak clearly during a migraine. The symptoms resolved quickly, and I decided to go to the ER anyway to get my head examined! I’ve been tracking an anne for 15 years. The ER ended up doing an MRI which found mild bleeding. Off to the ICU I went and had a pipeline stent repair on my 3mm anni the next day.

Luckily, I’ve had next to no physical or cognitive impairment. I am having headaches every day, mostly mild that consist of odd twinges, pain behind my left eye, heaviness and heat in my left ear, transient pain. I also feel a bit scrambled at times, dizzy at times and tired most days especially after exertion. I’m coming to understand that most of this is pretty normal stuff for what I’ve been throughand since I’m so new to it, It’s all surprising.

I am a psychotherapist for work and I have scheduled out of work for four weeks. I’m two weeks into that four week and I have very little confidence that I’m going to feel up to supporting clients. I’m work virtually via Zoom since Covid so that means a lot of screen time.

I am trying to figure out how to make some kind of plan for returning to work, for managing clients expectations, and for dealing with what’s next. I feel pretty good but even writing this I can go back and see how many mistakes I’ve made. I’d appreciate any feedback on managing physical discomfort, what helped you make a plan for next steps, and basically dealing with the new normal. Thanks JBC

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Good Morning! Thanks for the chuckle and thank you for starting your very first topic! A+. Don’t worry about spelling or punctuation we don’t grade on those things, thankfully!

I ruptured so my story is a little different. What I’ve learned from our members, all our stories are a little different. There are similarities and most of what you’re experiencing is spot on. Many times the surgeons will say it’s nothing they did and we’re sent to a neurologist. But in my uneducated medical opinion coupled with a damaged brain I’d like to say if it looks like a duck, walks like a duck and quacks like one, it isn’t a coyote now is it to them all. They’ve changed our blood flow, our brains need to get used to it when that happens in my opinion and experience. That wee bit of blood has probably sent some of your neurotransmitters on to a different road they aren’t used to being on and need a bit of time to get used to it. They’ll eventually get the synapses crossing over well enough but it takes time. Time to heal is what’s different for all of us. Some are rather quick and some need a lot more time. How much time is up to the individuals and the amount of damage their brain received.

I’ve a few questions if I may. How much time did your surgeon suggest to take off work? Some woman had me returning whilst I was still in NSICU :zany_face::joy:. Seems six weeks is pretty much what most of our members get. What were the orders you received when you were released? I ask that because you chose the word “exertion” and I hope you’re following the weight limits set. Your surgeon will eventually raise those limits so don’t try to exceed it. But if you mean mental exertion, ease back a bit and see if that helps.

When we are in the helping fields, we tend to forget ourselves. When we get a device in our brain, it becomes a good teacher in telling us that can’t happen anymore and our focus becomes centered on us. It’s perfectly okay, it’s needed for us to heal. I share my neurosurgeon’s mantra all the time Hydrate, eat protein, hydrate some more and rest when needed. You’ll need to put a new tool perhaps in your bag on listening to what your brain needs.

I like water for hydration but my neurosurgeon added to that Gatorade (28 oz), 3/day plus twice that in water for many months after every angiogram. I liked some of the G2 flavors but the electrolytes can come from a variety of sources. Some members here in the past taught me about the powders I can mix in water. My neurosurgeon explained that it’s to help get rid of the anesthesia after effects, the dye out of the body and simply because the brain needs the hydration to function properly. She queries her husband when he tells her he has a headache on what he’s had to drink and eat.

The protein is because our brains are protein hogs. The RDN student that came by to have a chat with me in NCICU said 90 grams is recommended on daily intake. The WHO recommends 120 grams per day last I checked. It has been awhile. In NSICU I had a prescription for 4 or 5 of the protein ice cream per day. I wasn’t eating. I don’t like to eat when I don’t feel good, never have. But I try to make sure I’ve gotten near 90. After every angiogram I made sure to get over 90. I used protein yogurt and protein shakes. I’ve tried a lot of them and have settled on the plastic bottles instead of cardboard ones I used to drink as they shake up better. But there’s all kinds of protein powders available now as well. If I’m having a bad brain day I try to get some protein in right away along with hydrating, it really helps.

You might try part days at first and ease back into your regular workload. Dealing with others can be stressful so you‘ll need to get out some tools on helping with stress for yourself. Watch your triggers and give yourself some grace. When I was able to work, gardening was my thing on bad days at work. Pulling weeds was my go to as I could see I had accomplished something. I also took up a couple other hobbies which helped. I see you’re a singer/songwriter so you may want to lose yourself in music.

There’s also the need for us to watch our screen time. We have a member who started a topic on how to ease the eye strain with different devices. I can’t search whilst I have this opened, perhaps you can. I think it was a specific type of screen he found to be most helpful. Found it Post Surgical Headaches - Suggestions for Deal . I just had to open the site on another tab! There’s always work arounds. In my younger days I’d hop or barrel through obstacles, since I ruptured, I’ve found it easier to just go around them. I’m also older so there may be that as well. We can’t blame our aneurysms on everything we experience.

I’d also suggest you reach out to your surgeon and let the team know what’s going on through your portal. It never hurts to touch base with them, at the minimum it lets them know what’s you’re experiencing. They might just have another suggestion.

If you haven’t learned some relaxation breathing yet, try it. You will have to practice a multitude of times throughout the day and of course for several weeks. It’s really beneficial in helping us to keep our blood pressure down which we absolutely need to do with hardware in our brains.

There’s also this which may be helpful Some Early Warning Signs you may be overdoing it - what is your experience? - #3 by Karla and this Feeling off after flow diverter, looking for healing experiences - #4 by Moltroub . I don’t know why it’s providing specific responses and not just the title, so ignore that please. @FinWhaleFan has posted a lot of videos on relaxation and other helpful websites. I think I might need to ask her to make a couple new topics on them​:joy:

Again, welcome to our group! Happy you found us! Most of all, thank you for sharing some of your story, it’s amazing how you were able to get imaged and a device in so quickly without having a lot of issues, good for you!

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Hi @JBC -

Wow! I am so happy to you went to the ER and got that MRI done!! You must be happy to have that stent in and already hard at work!

I, too, ruptured, and then also ended up with both hydrocephalus and meningitis, so my new normal has definitely changed pre-rupture. To treat my aneurysm, I had coils at first, and - like you - had a stent in the fall of 2024 to treat my remaining 3 mm aneurysm. After about 1 1/2 years to deal with all of that, I was able to go back to work, and I have been living in this new normal for over a year (don’t worry, I am on vacation this week so I am not slacking off on the job :grin:).

I had many wonderful speech therapists throughout my journey, but my favorite one - by pure coincidence - was a Certified Brain Injury Speech Therapist by the BIAA. My best tips for me on how to live the new normal were learned from her so I am just passing along what I learned, but admittedly, given your profession these may be old-hat to you (!!).

For several weeks, I logged my activities and then gave each an score as to how much energy I had. [Note the score was nothing scientific, just a gut reaction.] Yes, it was kind of a pain but you probably see where this was going. With all this data, I got a sense as to the types of activities that both revive my energy, as well as those that drain my energy.

One of my favorite resources on this subject is from Headway UK (a brain injury association) that has a great pdf of the topic, and they give a quick synopsis of what I did.

Armed with this data, I could figure out what are my personal triggers as well as guides on how to manage that fatigue. As a simple example, after I drove to public transportation I would do a mindfulness session first thing and count it as done for the day. Which is fine and dandy, but, my speech therapist brought up the point that since it acts as small battery recharge for me, wouldn’t it be smarter to do mindfulness in the middle of the day when my battery has been drained even further? Well, to be fair, I compromised: I still do a mindfulness session in the morning commute (takes the edge off after the stress of driving), but I often do another session at lunch to refresh for the afternoon. Healthy Minds is my own personal favorite ( :heart: the neuroscience lessons!), but I certainly use others as my mood strikes.

Another resource that I frequently use is Brain.fm. I do subscribe, but I used the free videos on YouTube to really try it out for awhile.

Underneath the four main categories (Learning, Motivation, Deep Work, Creativity), the app also does have sub-categories - including one of my favorites during the work day “Recharge” that I use a lot. Strictly anecdotal, but it really does make me feel recharged to help get me through the afternoon!

Post-rupture, life is now become more about managing my energy, so I prioritize what is important to me, and ensure I have the energy to do that while at the same time making sure that work doesn’t grind me down to nothing and that I can still live my life. It is a calculation, and I have had to scale back on things I used to do, but on the plus, now I only do what I want and that is a life wlll-worth living!

Sending good thoughts your way!! Let us know what else we can do to help you!!!

Fin Whale Fan :whale:

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Thanks for the detailed response. Very helpful. I realized I haven’t been eating or drinking nearly enough so I’m working on that now.

I was told two weeks of downtime I took for work and I’m not sure how I’m going to be able to go back with just four. When I talk about exertion, I’m talking about working on the computer, talking to people, doing laundry, basic life stuff. I’m sticking underneath 10 pounds for lifting for now until I talk to my surgeon at the beginning of the month. I am walking every day 2 to 3 miles on flat or nearly flat trails

Thanks.

You’re most welcome Julie! I get to typing just like I talk now - too much. Before I popped my pipe I was a very quiet person, extremely quiet. BH once heard me tell myself to just be quiet as I was getting on my own nerves and that was after I finally had a stent installed.

It seems helpers often forget to care for themselves unfortunately. Saw that when I was able to work and see it with folks in the helping fields here with our members. But there’s also folks who get focused on something and forget to keep some focus on themselves. Focusing is a lot of work! We all have times we just forget to hydrate enough for what we’re doing.

I’m impressed by the amount you’re able to do so soon after a procedure! I can’t say don’t do so much because that would definitely be the pot calling the kettle black. Electronics are a big part of everyone’s life now with computers, tablets , phones and tv’s. We can’t get away from them. Have you tried the 20/20/20 rule to help? Every 20 minutes look away for 20 seconds and blink 20 times? It may help, certainly helps stop eyes from drying out. I learned here from other members to adjust the screen settings on my devices. I did follow Charles’ advice somewhat in changing my screen protectors on phone and tablet (my preference) which helped a good bit as well. I’m rarely on the computer simply because I can’t bring it outside with me, so I didn’t see the need. If and when I start getting on it a lot, I imagine I’ll be putting something on it as well. As long as it’s not raining or snowing my preference is to sit on the back patio and listen/watch nature whilst on the tablet, doesn’t matter what temp it is.. Does my soul good.

Please let us know what your team suggests, one never knows who can be helped on their new life journey from what you learn.

JBC,

I am happy you found it also :slight_smile: my story is quite similar to yours however, I was treated for 3 aneurysms( 1 lg behind rt eye and 2 behind lft) with 2 pipeline embolization procedures (4/18 & 10/18). It has been a while and still doubtful that I can return to anything close to my former career. I had an extremely high functioning executive career in Global Payroll, benefits, HR.. etc etc.

I still experience ‘zaps’ in odd places in my head and neck that drives my attention inward. I must have things in my view in order to keep them in the front of my mind. I have 3 alarms for everything because I can get so easily distracted. I find it extremely difficult to keep a normal routine like I did when I was working and being a single supermom. Even basic routines like waking up and taking a shower, get ready, make coffee have gone out the window. I wake up to a new day everyday and it takes me a while to remember who’s on 1st.

I also suffer from Pseudobulbar Affect (PBA) from my traumatic brain injury which causes me to cry uncontrollably at any time or place. I have worked for several years to figure out something I can do that could possibly utilize my skills, but also give me a cover for the crying spells. I have not found anything yet. Coincidentally, I am not far off from a Counseling degree myself and don’t know how I could handle listening to anything that triggers me personally and the crying starts.

I would love to discuss different reasonable steps that could be taken to facilitate returning to work. Maybe for you, your note taking could change to AI transcript software that would at least ensure you could reflect on exact words spoken.

I am open to thoughts and ideas as well.

Take things one day at a time and when things get too overwhelming just slow the time way down and just worry about the next 1 minute or the next 1 hour. A therapist taught me Meridian tapping to help me calm myself in those scattered scary moments, especially while driving. You may find that your senses are heightened or weakened in some ways.

The good news is, time heals. You are doing fantastic :slight_smile:

Hope any of that helps ! Good Luck

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Hi!

This is a question I have been asking myself over the last 7 months. What’s the new normal and what symptoms might go away.

I had a full metal jacket flow diverter inserted into my 11mm x 17mm on my left ICA just over 6 months ago. I have found that excercise, hydration and making sure I eat enough lean protein is the most effective for me to stay clear headed. I have been dizzy since the surgery although I’ve had stents (pun intended) of dizziness over the last 8 years which is how my anerysum was originally found as I had no other symptoms. If I don’t keep up with my nutrition and excercise I find myself spiraling. I have another that we are keeping an eye on hoping that one stays stable :slight_smile: . The best advice I have is to try and take it day by day and give yourself some grace.

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