I had a craniotomy with 5 unruptured aneurym clipplings at age 43, 5 years ago next week. I’d like to know if any of you are experiencing continued light and noise sensitivity long term, and continued insomnia, which I do. Has any of you struggled with sensory processing? Has any of you found balance (healing) in your brain using supplements to restore neurotransmitter defficiencies? I’m going to study that further and see if I can figure out it there is something that could help. Thanks in advance for your input.
Hey Nina,
Yes, yes and yes. My craniotomy was not due to an annie but I now suffer from light, noise, huge balance issues and as for my sleep patterns they have been a mess. I’m now 6yrs since my last surgery and in very layman’s terms I’ve been told by the dr’s ‘Just deal with it’. I haven’t found any supplements that have been my key, I just have to manage the best way I can. I have another neuro appointment next week but I’m not expecting any great answers. I know this probably doesn’t help but that’s my experience.
Merl, Thank you for your reply! I’m sorry about your similar struggles, but I’m glad to know I’m not the only one with these long-term issues. Those sensitivities are increased as I get more tired in the day, and they cause me anxiety. If I find supplements to help me deal with this, and decrease my symptoms, I will try to remember to share here. Thanks for your support,
Greetings of peace and salutations. Im close to my 2 year survival anniversary of my dual; subdural hematoma ruptured annie. I’ve found that paxil helps with the anxiety…aroma therapy helps ( a little bit) wirh the uncontrollable muscle spasms and nothing has eased the sparatic insomnia. I also have areas on my left side that are “dead” numb while other constantly hurt and cramp and spasm. Irratability is my new name. Things I used to tolerate or wasn’t bothered by before now are pains in my behind. I discover more and more holes in my memory every day. I lose words I know I know midsentence and It either irratates me or embarrasses me. I’m no ray of sunshine…yet I am thankful every day to be alive. I also have moments where vertigo and imbalance nearly toppling me to the floor. I also stay afraid…my maternal aunt succomed to an annie at age 43 in 1994. I was 42 when I suffered and survived…I was 2400 miles from home and spent 16 days in a neuro ICU of which the first 3 days are a blank.
Nina, I ruptured five years ago plus a few months. My Neurologist called my increased sensitivity to light and sound “Spidey senses”. I actually went to the specialist, not because of tinnitus as there isn’t much to be done medically, I use a desk top fan at night that makes noise. When they checked my hearing, it had “drastically improved”. I do use a popular bluetooth earbuds with OSHA approved ear plugs now that is really helpful. I’ve also noticed on my “bad brain days” that sound and light make everything worse. My insomnia isn’t near as bad as it was but it was a lot of work to get to this point, and sometimes it just comes back. What I do is have a set time I go to bed and get up usually. Against the research, I read for about thirty minutes in bed and then turn off the light. Research suggests just going to bed and I can’t recall that I have ever done that. If I am still awake 30-60 minutes later, I get up. nothing happens overnight in healing the brain.
I was watching a show yesterday that mentioned “wet brain”. It’s an issue with alcoholics apparently and a diagnosis used in the UK. From what I understand, the alcohol kills neurotransmitters and depletes Vitamin B1. I am no medical professional, but it may be a place to start in your research. Make sure to touch base with your doctor on supplements as they can effect any medication you’re on.
I try very hard to stay hydrated. In fact most of the time I will drink two cups of water to one cup of tea or coffee. I have found a proper intake of protein, hydration, exercise as well as set times to rest to be my best friend. I also have to limit myself to times I am on the computer or tablet. I have yet to find the correct light setting on either one.
Hello Miki75, Thank you for sharing your journey, and areas of struggle since your aneurysm. I never had a rupture or migraines before my surgery, so that makes it harder to accept the consequences of the surgery, though I understand it could have prevented me a rupture and possible worse consequences. I hope that some of your your symptoms will get better with time. I sure can relate to irritability. It helps that you are thankful to be alive, and so must we be. Life is a gift, no matter what our difficulties are. Thanks for responding, and sharing your story!
Hello Moltroub, Thank you for your response. Never heard of “spidey senses”. To me, it’s like the nervous system is always “on edge”, and on “high alert”. I also suffer from tinnitus. I just read that “taurine” can help alleviate, reverse that. I don’t believe it 100%, but it’d be worth a try. I might add that supplement to my diet. I can relate to “bad brain days”. It seems like there is a short window in my day where I feel good. Yes, tiredness certainly increases the sensitivities. I have to work on my insomnia, and hope to treat it more naturally soon. Yes, reading before bed Is good, and screen time is to be avoided at night, and reduced during the day, I agree. I have decreased the light setting on my laptop screen. You can do that through either Control Panel or Settings. Thanks for mentioning B1. Thanks again for your response.
Spidey senses is his term to what happens to folks he has seen that have had some type of brain injury. He shared that a significant amount of his patients often have similar issues of sounds being too loud and light being too bright.
Yes to the control panel. It’s just trying to figure out the brightness setting that is comfortable. Seems like it often changes.
I too am almost 5 years out from a SAH with coiling. Every day is a struggle with light (especially flouresent and strobe) smells (especially perfume) and noise (specifically high pitched). Even when I go on a walk around my neighborhood, the smell of laundry being done makes me feel nauseated. I still require a 2,5 hour nap every afternoon, but as far as brain cognition, I am having a great experience with Lions Mane Mushroom supplements. It helps me process information and follow conversation a little better.
I hope this is what you asked, because I can’t scroll up to see the original question. Haha.
P.S. My husband says I have super powers and can even smell things on tv.
Ms. Kimberly, if you need to see the original post, go to the down arrow on the far right under the blue bar. Click on the down arrow. You will able to see the last entry and scroll up to see the first. You will have to click on the blue bar at the bottom to get back to your typing. Give it a try!
Hello Nina. I am in the same boat as you. I had an unruptured giant aneurysm clipped via craniotomy a little over 4 years ago. My aneurysm was left frontal & attached to the optic nerve of my eye. I did not anticipate any of the personality changes or increased sensitivity (to noise in particular) that I now have. My tolerance to noise, smells, light & people (lol) are much lower now than before. My spouse tries to tell others that I simply have no filter anymore. This is both liberating and disturbing as it sometimes results in outbursts, even when dealing with my mother. My focus & concentration have certainly decreased as well. My balance is not as good, as in I fell 1 1/2 years out from surgery & tore my MCL & was laid up for several months. I was 50 years old when I had my craniotomy. My anxiety level is higher now as well. I never did return to work and have been on disability for the psychological effects since that time. I will try to attach the most helpful article I have run across to explain these changes about PTSD brain. So, Nina (and others), you are not alone in these changes…even when the aneurysm has not ruptured. Evidently, surgery alone can cause these changes. My insomnia has been relieved mostly with Magnesium & sometimes Valium. Best wishes to you all and that you find & are able to accept your new ‘normal’.
Hi Nina, I am also almost 5 years with a Vertebral/PICA rupture in the brainstem. I also experienced unusual sensory changes with my hearing, balance, touch, and vision. As a consequence of SAH, I suffered a small stroke in the brainstem near the vestibular/cochlea nuclei which explains changes to my balance and hearing in my central nervous system. I went through vestibular physical therapy which corrected my balance. For hearing, I suffered single side hearing loss but miraculously, the brain has adjusted so I have no perceived hearing loss. I had issues with sound illusions where it was difficult for me to sense sound location but I have gotten used to it. I still suffer from tinnitus but use music therapy to calm it. I was also sensitive to vibration as though I had spidey senses but this issue has gone away over time. I also have vision issues which has been partially diagnosed and treated. The stroke lead to vestibular/ocular movement disorder resulting in double vision and nystagmus. This issue is currently under control with prism glasses, vision therapy and medication. But, I have one big medical mystery which is my night vision. I see halos from LED lights and starbursts from white light. Also, depending on the light source, my contrast sensitivity is effected diminishing my acuity. It is very frustrating.
In a way, it is comforting that other survivors are experiencing unexplained sensory issues in that I am not the only one.
I recommend the following your issues: 1) light issues. Polarized tint clip ons are very effective. 2) Sound. there are noise cancellation head phones. Find music that is soothing and works for you. The more expensive solution are hearing aids. Ask an audiologist whether it can be adjusted to cancel out sound, 3) insomnia. For me, binaural beats was a rhythm that puts me to sleep. You can find my tracks on Youtube. Rigorous exercise also helps. I am not sure whether your State is a friendly cannabis state but friends tell me that it is very effective for insomnia.
The funny part of the brain is that in my case, it is not neurotransmitter deficiency but rather over compensation in the vestibular system. The medication (Gabapentin) is slowing down the system.
This is my first time commenting…I have enjoyed reading the common experiences. I had my first crainiotomy in 2000 for right mca 9cm unruptured annie.(found during MRI to check for MS). Unfortunately the surgeons where i was at had never seen a “fusiform” one and said it would be 50/50 chance to live so they closed me up without doing anything. I had weird audio “echoing” when I got home and other PTSD symptoms. 18 years later I was at a different medical facility and “top rated neurosurgeon in Oregon” who performed another surgery and managed to clip my annie. What a difference! I still have tons of balance issues, tinnitus, cognative issues, other tbis issues but at least it’s clipped for now! I do have a lot of insomnia which I attribute to the tbis.
Hello, JulesinOH. I liked the BAF article you attached. It reflects how we survivors often feel. We have to be kind to ourselves, and not overdo it, I find. Thanks for your response.
Auntieem, I’m so sorry you had to have 2 surgeries before they could clip your annie. I was privileged to have a university assistant professor to clip my annies. Nevertheless, I still suffer from insomnia, due to the nervous system being hyper aroused all the time, as a result from the surgery. My goal is to find a way to calm it down during the day so I don’t have such a hard time shutting down to nap or sleep, and maybe one day again know what it means to wake up refreshed. I forgot.
Thanks Nina1. Yes I was lucky to have the head of our teaching hospital neuro do my second. whenever a staff member, nurse etc. asked who was doing my surgery when I told them they said I was very lucky! I think anxiety from what loses I have experienced is my biggest problem. We are very very lucky to be alive, I know, but it’s so darn frustrating to not be “sick” but so disabled compared to before surgery. Good luck to you with continued “calming”.
Hi Nina,
I am sorry to hear about the issues you are experiencing 5 years after your surgery. I am currently living with an aneurysm but I have many of the same issues. I deal with vertigo as it comes with 2 different prescribed medications and lots of rest. I wear sunglasses indoors at times as well as outdoors. I have hearing loss and tinnitus ( go figure).
I usually do well on a good diet ( gluten free for me - reduces inflammation) , eat lots of greens! Try to limit caffeine (again my biggest problem ) I super hydrate especially when I exercise which helps tremendously. I take magnesium- calcium citrate ( special note keeps you regular ). I also take Vitamin D, B supplement, 2 x a week. I drink organic aloe juice every day. At night I started taking an herbal supplement called Avinol pm. It’s a bit pricey but seems to work well for me. I’m 3 months into taking it and I am sleeping better and longer with very little morning grogginess. Now if I could just get to bed at a decent hour . I really hope this helps. It’s not perfect but we have to keep on trying different things. Good luck. Let me know if you find anything new to add to my growing list. Take care. Sincerely
Lydia
Lydia,
Thanks for writing. I was in the watch and wait mode for 5 yrs before my surgery, so I can relate to where you’re at. I have hearing loss and tinnitus too. You’re absolutely right about the diet making a difference and about inflammation. I am considering going to juicing and more vegan for a while, since I’m also fighting a cancer battle. I just have to get enough determination first. Thanks for sharing what supplements you take and what helps you. It’s really nice to hear from you.
go figure).
). I also take Vitamin D, B supplement, 2 x a week. I drink organic aloe juice every day. At night I started taking an herbal supplement called Avinol pm. It’s a bit pricey but seems to work well for me. I’m 3 months into taking it and I am sleeping better and longer with very little morning grogginess. Now if I could just get to bed at a decent hour 
. I really hope this helps. It’s not perfect but we have to keep on trying different things. Good luck. Let me know if you find anything new to add to my growing list. Take care. Sincerely