New and scared. Ruptured aneurysm and SAH. A lot of questions for Google leave me with more Q's and anxiety!

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Hi, I’m 28 and I unfortunately became a member of the club in December last year. I went to see my Dr and then hospital after a few days of headaches. Found out about an aneurysm which then ruptured around an hour or two after it was discoveredd! Fortunately I was still at the hospital when it ruptured and was able to be looked after immediately. I think already being there saved my life. Ruptured, coiled and currently recovering at home after a couple of weeks in hospital. I’m happy to expand on this if anyone wishes, but I won’t bore those of you who don’t wanna know!!

Two months on and I’m overall recovering well, however I am still very scared every day. Every time I try to learn more about what’s happening to me, I see things about mortality rates and complications which terrifies me.

I felt like I was getting better, but I’ve started getting more mild to moderate headaches which scare me. I have an angiogram coming up which should hopefully provide some reassurance, but I’d like to know from others who’s aneurysm ruptured and had a coil inserted, what were the first few months of recovery like for you? I worry so much about my life expectancy now and tbh I don’t know if I should be worrying about how long I have left, or if there’s a chance I can live a relatively long life, even if there are some quality of life changes.

I’m kind of just rambling at the moment, but to summarise I think I’d just like to ask others in situations similar to mine, how they managed feelings of uncertainty and dread? It seems like every time I get a headache, or everytime I lose focus on things it feels like a step back. Objectively speaking I am doing much better than I was, but I’m trying to understand how the next few weeks/months/years will look for me without Google terrifying me!

There are so many things that I don’t know if they’re normal as part of recovery at home.

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Welcome again Lemon! When I did your first welcome, I had to look up “hardstyle music” I had no idea what it was.:joy:. Sorry to get off track, but I just needed to share my bit of ignorance with you…

I ruptured in November 2013. I had no affect, zero for three years or so. Not having emotions made me robot like in speech which was really bad after rupture. I could no longer read many emotions in others either. But my favorite saying was “I walk, I talk, I wipe my own arse. Life is good!”

My advice to you is to ignore the statistics unless the article you read can actually support their numbers. Any entity can spew out a bunch of numbers and percentages but they mean jack squat if they can’t show how they acquired them.

Most people will remind you that you survived. You should remind yourself that as well in my opinion. It’s very hard to when we are scared about what the future can bring. I don’t focus on next year, I focus on what I can do today. From where I am now compared to when I first ruptured is a vast improvement. Sometimes BH has to remind me of that when I become frustrated. Taking things one day at a time helps a lot in the beginning and still helps me now.

I set goals every day for myself. The goals have become more realistic ten years out. As everyone seems to like to remind me, I am not 20 anymore. I always start my day with a few relaxation breaths, get up and make the bed. Then I do my bathroom routine all before my first hot cup of tea. That first 15 minutes starts my day off well. I strongly encourage you and everyone else to learn how to do relaxation breathing. Just find the technique that is easy for you. When our brains get enough oxygen, it’s easier for it to work and the fight or flight calms down. In fact if you do it correctly you won’t be able to make a tight fist as our muscles relax with enough oxygen. This in turn slows our heartbeat as well as lowers our blood pressure.

I can honestly tell you I never had migraines until I ruptured and then the first long bit I had them every day seemingly all day. The Neurologist I had at the time, tried many different medications and none worked. He did recommend a SPG block, the first one was fine, the second hurt like the dickens and I don’t recommend things that hurt that much.

Give yourself time to heal. Make sure you stay hydrated and eat a lot of protein. The WHO recommends 120 gms whilst the USA recommends 90 gms. Those are minimums of course for those of us healing from a rupture in my opinion.

I also feel it’s important that we learn more about the brain than reading statistics. The more knowledge we are able to gain, the better equipped we are to understanding what’s going on. When my Neurosurgeon asked how I was feeling the first time I met her in ICU, I told her “My synapses are not crossing my Corpus Callosum correctly.” It’s something I learned back in college. She was surprised to say the least😂. Here’s some articles to read Physiology, Synapse - StatPearls - NCBI Bookshelf
Corpus callosum - Wikipedia

Probably the downside to having coils is that they can compact. I have an aneurysm that is multi lobed so it took a bit of recoiling and then she found a stent that could work and so far so good. But follow your surgeon’s instructions on weight, rest, etc.

Most of all keep in contact with us. We really do understand the path you’re on.

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Thank you for your kind words and wisdom, I really do appreciate it more than you know. I’m glad I was able to introduce you to some new music! Although it’s not to everyone’s taste, and that’s putting it mildly!

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I can’t listen to that fast beat music it messes with my brain and my heart which has SVT seems to want to keep up with those beats🤣. Since I ruptured, I had to go through my extensive music list on my phone and delete some of my favorite tunes because the pitch was too high for my brain. I have to be careful now.

I was born in ‘60 and the only music I’ve never cared much for is any that encourages violence. Probably because I was born in ‘60, as there was a lot of violence in that decade and the next. In the late ‘70’s I finally settled on groups like New Riders of the Purple Sage and Supertramp when I moved away from home. Though I still have the vinyl of Jimi Hendrix my younger brother gave me for Christmas one year in rebuttal of the teasing to heckling of our older brother on my taste of music. I was going through several different genres of the time and he would tell me I was copying him listening to Linda Ronstadt or wanting to borrow his Van Morrison record. And oh my if I started to sing one of the Partridge Family songs did it ever start. So for a couple of years I went to Country which I still listen to. But our older brother was told by his girlfriend of the time to stop and he bought a couple of tickets to the last concert of Neil Diamond and Barbara Streisand. I was very excited of course until Mom nixed him taking me down to San Diego to see them, the day before the concert.

Of course there was Disco and Electric music…see what you’ve done Lemon - got my memories started! I do love music, it helps our brain reconnect. If we dance to it, it helps our balance. So for no other reason but love of movement, grab someone and cut a rug best you can! And thank you for bringing up some of my lost memories!

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Hey Lemon,
Welcome to Ben’s Friends. You’ll find lots of good people here with a lived experience.

Ohh, me too. Every ache, every pain and I was asking myself ‘Is this it?’ It was like I was walking on eggshells, just waiting for the next one to break. But over time we learn what is ‘normal’ (as if ANY of the side effects are normal) and what is an ‘Act Now’ sign. Things have changed within our brains and it can take quite some time for us to adjust to this ‘New Normal’. My neurosurgeon gave me the usual ‘6-8week recovery time’ speech, but I was 12 weeks on and I wasn’t seeing that recovery. That ‘6-8week recovery time’ is about right for the wound healing, but the body’s internal adjustment can take much longer and some of those recovery aches and pains are shocking to say the least. On a few occasions I turned up at A&E, they did a scan, only to be sent home.

This thing called recovery is not always a straight line of progression and even years later I still have good days, bad days and days you wouldn’t wish on your worst enemy. Some people are fortunate enough to bounce back almost unaffected, but for some of us there can be ongoing issues. Often the medicos make it sound like we are the only ones having those weird side effects, but I have found that it is rather more common than they may acknowledge to have some lingering effects.

Dr Google can be OK for ‘generalised’ information or a broad overview, but using it for self diagnosis can be fraught with danger and yes, I went there too. Some of the online stories of worst scenarios were scary. For me, I now look for a progression of symptoms. For me again, a headache, that’s normal, even a bad one. My right eye closes up and my face droops, but if that progresses to BAD tingles down one side and then progresses to BAD nausea, for me, that’s an ‘Act NOW’ sign. Over time you too will learn your signs, but I can assure you those weird recovery side effects are normal, even months later.

I have need 6 neurosurgeries over the years and over the last few months I have been getting some more weird symptoms. I saw the neuros a few weeks back and was told I’d be needing another. The glands in my neck swelled up, which is a sign of infection and I was scared. Initially they decided it was dental and removed all of my lower teeth. The infection didn’t clear up, it wasn’t dental. Turns out I had a severe deep throat infection and 2 days ago they decided to remove my tonsils, I’ve just returned home today. I have another neuro appointment next week and I’m hoping/wishing that the neuro agrees that this may have been the cause of my symptoms and therefore no further procedures are needed.

If anybody tells you this journey is easy, they have never been in this situation themselves. We know this because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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Thank you Merl. I really do appreciate you taking the time to share your experience with me. I hope everything goes okay with the neuro.

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You are so right! By the way, I ruptured September of 2013, so we were going through the same thing at the same time. I also have coils. Take one step at a time, one day at a time. It’s tough, but you can do it. It’s scary, and yes we have PTSD about the headaches, but over time we do get better. Just don’t rush the recovery. Also, it’s different for each of us. My neurologist prescribed Fiorcet for my headaches, and I take a monthly injection called Ajovy. I feel much better with these meds. Rest when you need to and follow Molttoub’s instructions, they are great. I am very sensitive to sound and light, but I’ve learned my limits and how to adjust. Be very patient with yourself, and learn to like/love yourself after an aneurysm. Thanks for sharing. We are here for you and each other.

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Welcome Lemon!
Grateful you are recovering! I think we all have similar fears, and concerns. I am a survivor of 23 years. Sometimes I can’t believe it’s been that long. I had headaches prior, and still do. I will say I stopped focusing on uf it was “That” headache. My situation was different than yours, but I had a coiling that failed, then had a craniotomy. It was difficult then as I had an 11 yr old son I had to look after. I remember being frightened as I had cognitive impairments due to a bleed during the coiling. I had to go on disability as I couldn’t process information and my job would not allow me the time it took to heal enough to be able to work. Fast forward, I was 42 then and will be 65 in 10 days! This group has been a tremendous help for me through the years, and I continue to participate because I know the struggle, and at times still need reassurance. It can be difficult for others who haven’t gone through all we have to understand our concerns. Again, glad you are part if this group, and I pray you continue on your journey of complete healing. Blessings~

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Greetings!
I just read your post and saw you take Fioricet. I have been taking that for 20+years, and it works great for me. I haven’t heard many who take it. Glad it works for you as well. Wishing you well and continued health!

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MsJay, just read your post. I to take Fioricet and it works great for me as well. Don’t know many who take it. I’ve been using it for over 20yrs.
I pray continued health for you. Blessings~

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Hi,

I am sorry to hear about how you are feeling and I know this platform will help you as you are not the only one that is going through what some of us have. I had a rupture in 2018 with coiling and 5 years later, I still have headaches, less but still there. I had a stint of tinnitus too and pounding every night in my head for about a year and that too had settled. I’ve been on most medication but still not much relief. Despite every day I get out of bed, pushing myself to make the best of my day…it has taken some mental training but it’s been the best medication. I paid for a Neuro Psychological assessment which diagnosed any brain dysfunction - I gave a working memory deficit and my verbal reasoning in comparison to non verbal is significant. This has helped me to learn to cope. Dont give up…we are here!

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Fiorcet is definitely a game changer for me. It works fast and truly makes me feel at ease.

Blessings and healing.:pray:t4::heart:

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hi merl, off the subject a bit. i got stuck on them taking all your lower teeth out!!! dental work is my nemesis… what a shame… sorry i digress from the aneurysm subject.
sending healing thoughts for your upcoming neuro appt.

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Mine too, well that and neurosurgery :rofl:
Mind you I don’t need to worry so much about dental 'cos now they’re ALL gone.

Merl

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True! :joy: who needs teeth anyway?
Liz

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Hey Liz,

True :rofl:
I should have known really. Way back when my neurosurgical journey started, '96, the theory was ‘We operated, we fixed’, only it wasn’t fixed and they operated again. When that didn’t ‘fix’ either they decided to look for other causes. They first said ‘ENT’ but those tests and scans showed nothing. Then it was eyes and I now wear glasses, but it didn’t improve my head pain. Through that process (and more dr’s than I care to count) they decided it was my upper teeth, and, you guessed it, they removed my top teeth :astonished: I had a top denture made (So at least I have some teeth, even if they’re not mine :laughing: )

That STILL didn’t do anything for the head pain and their response “ohh, you must just have a low tolerance to pain…” My blood boiled instantaneously. I’d been dealing with nauseating, mind numbing, agonizing pain for years and the best they could come up with was pain ‘tolerance’. No, I have a low tolerance for arrogant medicos. And they wonder why I have such a low opinion of Dr’s. Hmmm, I don’t know… Seems, I just love pain :confounded: GGGGGRRrrrrrrrrrrrr (I’ll get off my soapbox now :rofl: )

Merl

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Merl, I just think it’s so weird that removing teeth that are healthy is still done today. Mom had all her lower teeth removed in the ‘40’s because of a heart issue she had. It didn’t stop the issue🤪. I was really upset when I had two removed and the dentist said it was because I smoked, when I shared this with my Rheum, she used one of the meds she has me on and no more jaw pain. The dentist didn’t know that the DM I had could cause issues. But then again, he doesn’t have any other patients who had a rupture or any he knows about who has a connective tissue disorder. I told him, he needed to educate himself😂

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After my 2nd neurosurgery, my symptoms still hadn’t resolved, they decided to go through and blame anything and everything the could find from my diet, to my eyes, to stress (past, present and future stress), to my use of medications and… you guessed it …dental. As the headaches were in my upper face and eyes, the dentist removed all of my top teeth :astonished: It didn’t help with the headaches and it didn’t help with the pressure in my face neither. When I confronted the dentist about this his response was ‘Well, now your upper teeth will never be an issue…’ yea because you removed them all. Tsk.

Ohh, they don’t like being told things like that. They can get a bit anti when you tell them their education is lacking. I did that once and from my experience, I won’t be doing that again :astonished: :volcano: :face_with_spiral_eyes:

Merl

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You know me well enough by now Merl that I’m going to challenge most everything. I still tell doctors they need to get educated it doesn’t phase me a bit to do it when I think they’re not. I once told Dr. Q-W she needed to get educated on what patients actually go through after a rupture and not be ignorant about it. She did​:joy:. She told us at the next appointment we had that she’s been asking every patient what they’re going through after they rupture. But I also told her that she was wrong when she told me my brain and healed all it was going to and gave her the name and university of the psychologist who has done multiple decades of research on trauma to the brain.:joy:

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HI, Lemon I hope you are well , I had a Ruptured Brain Aneurysm with 10 coils placed and had a terrible recovery ended up with bacterial meningitis and was on a vent for almost 2 weeks, ICU FOR A GOOD MONTH and had a VP Shunt placed, then a month of inpatient rehab, then it took a good 5-6 years for me to get back a mostly normal life. I was 41 when it happened. I finally at 9 years to the day of my aneurysm was able to go back to work full time doing what I love. I hope all is well for you. I did have angiogram every 6months then yearly to make sure all was good and I no longer have to have them. I just celebrated 10 years since my rupture and I am going on a cruise. let me know if I can help you in any way
Just wanted you to know you can do fine after a rupture, I haven’t had any complications.

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