My aneurysm was on the right PICA in the brain. The lingering effects this left me are balance issues, vision of the right eye, and a taste distortion, which one doctor labeled as "dysgurgia".
I have gone to several specialists as a result of the taste. I have tried several drugs; however, nothing helped and the side effects were not worth taking them. So, I am seeking advice from anyone who has the same taste distortion as to what might be done to minimize this. I love to cook and needless to say it does make cooking a challenge! However, it does not stop me.
I have been told that part of my taste distortion is because I have challenged brain cells not in the damaged area of the brain to do something they are unaccustomed to do-taste. One Neurologist explained that the brain has an amazing plasticity; however, one of the things it cannot do is resurrect dead cells. Once the blood hit the living cells, certain ones were killed, so others are left to do all the things I have learned to do again, such as walk, and talk.
However, I do think there are things that can be done to impact the living cells. So, if anyone has a similar taste issue and does something to minimize it, I would love to hear what they do.
This is a great site of fellow survivors and really makes me value the story of each person.
What comes through each story is that each person is a fighter and has chosen to live their life as fully as possible. I think we all have also discovered the amazing plasticity of the brain. It can be trained and does continue to grow.
Thank you and keep up the positive attitudes, my friends!
I see this from time to time with other survivors...how awful to have taste distortion...I am going to send and share this post and see if you will get more help on this matter...Good Luck ~ Colleen
I found singing helped me as my Sisters used to sing to sing to me.
(Rude ones our Dad taught us when we were young!) I woke up singing old songs and Irish ones.
I feel sorry for my hubby and daughter, and although not my fault I had an SAH I get feelings of guilt as I know they went through hell.
It's so good to be alive and smiling and walking albeit 100 yards. Good Luck Holly and all on BAF.
Keep it up xx
Without a doubt the brain is a most amazing organ. It has been 23 years since my rupture and I had some of the same difficulties you are experiencing. This biggest difference was back then no one had a name for most of the things I experienced. Without doing anything, I can say my taste has markedly improved. While I have difficulty distinguishing some seasonings, most taste buds are functioning. My sense of smell was drasticly affected. To this day coffee, first thing in the morning makes my stomach flip.
you'll no doubt not like this but its about time. When trying to get our body back in shape it takes practice and time. The same holds true for the brain. Keep cooking(ask family and friends for suggestions as far as seasonings),keep it simple. Right now is about rebuilding NOT continuing from where you were BA....before aneurysm. Good nutrition, focusing on things good for the brain can only help. (ex. sweet red peppers,walnuts etc.)most importantly, take time to get to know the new you.
I, too, had taste and smell distortion for about two months after my occlusion and coiling. It was awful! The surgeons office refused to believe it had anything to do with my procedure. I lost about 30 lbs because all I could manage was yogurt and saltines. After a while I started to think about my comfort meal, which is brown rice sauteed with onion, a scrambled egg and some tamari. I made it for myself one day and it tasted so good. After that, slowly I started to eat again. After about 4 months, I was back to normal.
I would start with all your comfort foods and go from there.
My procedure was December, 2011 and now my lingering challenges are lack of energy sometimes and a vision problem in my right eye that the surgeon told me up front might not resolve. It's much better now, but I'll take it.
This group is awesome, and I find comfort from you! Hope you feel better soon, Holly!!!
Hi Holly and Welcome ! . I had a ruptured anuerysm in Jan of this year and the thing that I noticed most when I got home was how horrible everything taste! Now it has been almost 6 months since the rupture and the taste buds are adapting. I say adapting because I am not sure they will ever be (the same) as they were ! I am eating things that I never would eat before and I avoid old favorites cause I just dont think they taste good anymore. In doing this I am able to once again enjoy eating to some degree LOL ( if I didnt know what it tasted like before and I like it now ) all is good . I do miss my old faves though and maybe one day I can learn to like them again. Hope this helps and good luck holly
Isn't this just like us? I suggested favorite foods and Patricia suggested just the opposite! Recovery is quite the crazy thing, isn't it?
No wonder we need each other so much.
My aneurysm was on the right PICA in the brain as well. The lingering effect for me is the same balance issues, vision issues in both eyes; had to purchase new glasses which still does not help, and a taste distortion, which causes me who is a true “Foodie” some heartache. I have found that rest is my new best friend. I shut it down now and do not push.
When I first came home from the hospital my lunch and dinner consisted of either grill cheese or cantaloupe for about 5 months until I started getting my taste back. I am still not quite right; but have learned to deal with it. It has been 2 years for me this December since my aneurysm ruptured. Life changing to say the least. Next follow-up procedure is this coming December.
I went back to work which has not been easy; but I am not a quitter of anything. I have my good days and bad. Memory is one of the major things I have to deal with. Have to make lots of notes. Wish you all the best.
Water even tastes horrid I just wish chocolate did as I love it and it wont taste horrible !!
We will get there so keep your chins up and I'll keep my 3 up xx lol
Be Well All
My Name is Jim. My best advise to you is "Fight The Good Fight" NEVER GIVE UP.
My story is a little different but an excellent example of the amazing capabilities of the brain. My doctors were absolutely amazed at what I was able to accomplish.
I suffered my ruptured brain aneurysm on 5/7/2010. I am an engineer and prior to that I was running my own Plumbing Mechanical company working minimum 12 hour days 6 days a week. I do not remember anything in the hospital for about 3 days after the rupture but I do start to remember having to be told time after time what had happened to me, and I remember having a difficult time comprehending what they were telling me. I found this the most disturbing problem. So I Started. Reading Reading & more Reading until I couldn't keep my eyes open. Playing Suduco game after game. Doing as many math exercises in my head as I could. One time I remember laying in the MRI machine (and to keep occupied) forcing myself to calculate how many 1" X 1" tiles lined the walls & floor of the bathroom I had just been in . 8 Months later I started to return to work. I couldn't drive so I had my wife drive me. I went to a job site to look at a particular problem and found that I could accomplish the engineering needed. I continued pushing myself and 2 years later I discovered that not only could I accomplish the needed engineering tasks I realized that I was also thinking out of the box and approaching problems in new directions. I can't help thinking it was all the pushing I did to myself, and my doctors agree. The brain is an amazing organ. It cannot fix the cells which were damaged but it can develop new neuro pathways and figure out a way to overcome the problems.
Fight the good Fight; Never Give Up
I had several aneurysms clipped and wrapped 2 years ago. I no longer enjoy foods I loved prior to surgery. Lost weight, but am now concentrating on adding new things to my menu. My doctor does not believe it is related to the surgery, but I have no other health issues. Just have to find new foods to love.
I have zero sense of smell, and can only taste the basics; sweet, sour, spicey, bitter and salty. I have been to 2 different ENT's. One said I must have gotten a virus during surgery, the other wanted to do an MRI which I was not in the mood for, plus I was due for my year-post surgery check up which was including a CAT scan. At that check up my neurosurgeon did not see any nerve damage (nose), and had no idea as to why I lost my sense of smell. He said it was not a common side affect that he was used to hearing about. Would love any advice?
My surgery was May 7th 2013
I had this type of problem with some foods for a few months after surgery, mostly with foods with sugar in them. In time this problem will leave you, or at least it did for me and I have had no problems with it in many years.
I had a friend who had the same problem with his favorite beverage, which was beer, and after his
illness he could not stand the taste of it. He got his taste back for it back also.
The odd thing is that I can taste milk chocolate (limited brands) just fine; not bitter chocolate as the taste is bitter to begin with. Since I could not eat right, I was eating Hershey's milk chocolate kisses with almonds, which tasted so great! My logic was that I probably am not packing many calories on since I eat so little! My doctor just rolled his eyes when I told him this and said I cannot do that! He was right, now I am trying to shed the 10 plus pounds I have gained and really do not need!
That is odd, as several of my Neurosurgeons all questioned if my smell had been altered, as they seem to indicate that was not unusual with a brain aneurysm in the area where mine occured. However, my sense of smell seems fine. Most of the doctors indicate that the issue is not with the tongue, as it was not impacted. It is with the nerve from the brain to the tongue, as the impulses have been disturbed. I think many have indicated what I think is probably the answer for me-to hang in there and keep fighting but do not give in to the oddities you find yourself faced with.
I had my aneurysm 22 years ago and my ability to taste was severely impaired the first 3 or 4 months but gradually came back. My sense of smell was also effected and now I can only smell out of the right nostril. The vision (left half of both eyes) and balance are still issues as well, which I am pretty used to by now.
My olfactory (smelling) nerves were wrecked so I have no sense of smell. It means my taste is not very specific any more. I get the basics (sweet, salty... etc.) but that's it... fancy curry with specific spices doesn't work for me any more... yeah... it's spicy... that's about it for me. I tend to over-salt everything now to compensate. Even when I was doing chemo (breast cancer) my tasters were off a bit, but it came back. Not sure now that the nerves will regenerate. If your olfactory nerves were not damaged, it will probably come back.
Thanks, Holly for the info. Mine is more of a constant nausea feeling, sometimes I wonder if I just don’t like to eat anymore. I also am not able to drink wine any more. My husband used to joke that he was going to hook me up to am IV because I liked to drink my wine. Not that I had a problem. Now if I drink 1 glass I just don’t feel well. I really do miss my occasional Happy Hour. Two or three glasses and I was ok. I also liked to drink a glass or two of wine while I was eating. Not any more.
I get to hallucinate smells. Mostly really bad ones-like the hospital smells. Then I have panic attacks. But my taste is off too. Nothing tastes the same, which could be related to my sense of smell. It’s taken over two years to figure out what all deficits I have. I fall over a lot. I get lost in places I’ve been to often. Memory, fine motor control, memory. Good luck.
Hi, My annie was on the left side, my corotid artery and optic nerve. He didin't go near the area of the nose nerves. I get "ghost smells" though. Some are nice, and some are hospital. In fact I didin't notice my nose problem till about 2 weeks after surgery when I went to the yankee candle store and picked up a candle to smell it and nothing! so I tried a few of my favorites..Macintosh :) and still nothing. Then I started to panic and smell every candle in the store and nothing. There was a smell in my head, which was hospital smell, almost mediciney which made me think it was the last thing my brian smelled before I was knocked out for surgery. I can't smell a thing though. If someone put dog poop up to my nose (with my eyes shut) I wouldn't flinch. I am glad I have some on my taste though! And I am very thankful I dont have any other side affects like some people experience. And I'm alive :)))