Hello everyone, thanks for the add to the group. I had been having daily pulsative tinnitus in my right ear for a month, some dizziness and dull headaches, so my primary Dr. ordered an MRI & MRA. The only health issues I’ve had prior was migraines since 16 and high cholesterol. I was diagnosed with a 4x3x3 saccular aneurysm arising superiorly from the supraclinoid right ICA. Since the diagnosis and awaiting seeing a nuerosurgeon, I’ve been very anxious. I’ve been reading a lot and just want to know the do’s and don’ts. I lift weights 3x per week for exercise but read that I shouldn’t lift. I drink wine occasionally but read drinking is not good either. I’ve been a ball of nerves since finding out 3 weeks ago. I can’t wait to see the nuerosurgeon to get some direction and questions answered. Any tips are welcome.
Hi Di!
Welcome to BAF Support! It’s great that you found us but always disappointing that you came looking!
I think the first thing is you’ve found it before it has caused any trouble. It’s a shocker but it’s a good thing. The neurosurgeon will be able to tell you what might or might not be done about it.
I have a different condition from the folks in this community but the implications of it are the same as for a brain aneurysm: I also had pulsatile tinnitus. I’m quite an analyst, so my immediate reaction was to analyse the heck out of it. It’s good to do a bunch of reading but I found myself frightening myself about as often as I encouraged myself that people get through this kind of thing. So if you find reading on here is a bit much, take a break. While it is helping, read on.
I live in the UK where healthcare is free but the downside of that is that you have to wait in line. It took me a whole year from seeing my primary doctor about the tinnitus to getting into the operating theatre. During that year, the pulsatile tinnitus got noticeably worse and I worried that I might rupture while waiting to get to the front of the queue. I don’t think you’ll be waiting anything like this time in the US but what I did in the meanwhile was:
- I quit caffeine, chocolate, alcohol, straining of any kind. No smoking if you smoke. In general, it’s much safer to quit these things until you’re through this. It is also a good idea to keep up sensible exercise: don’t stop simple things like walking, etc.
- I talked to my family, friends and work colleagues about stroke. I decided that if they knew I had a higher than average risk, they could really help me if they found me unwell, much better than if they had to guess that I might be having a stroke.
- I bought myself a medical wristband. I found having one of those (and putting my medical situation and my wife’s contract details on the wristband and on my cellphone) meant that I felt I had done something to help myself. You can feel rather powerless, so doing something to improve the risk is mentally a positive thing to do, I think.
So have a think about these things and see if doing any of them might just help you feel a bit more in control.
Very best wishes,
Richard
Look at you doing your first topic, well done!
Definitely have a list of questions for your neurosurgeon, ask loved ones if they have any questions too. They all help! Either take someone who can take good notes or ask if you can record the neurosurgeon. Both would be helpful. But you can’t record someone without permission, at least in NC it’s the law.
I ruptured and my aneurysm has never fully occluded so my rules may be different from most. The year prior to my rupture, I had an emergency lumbar repair so I could keep walking. Both neurosurgeons put me on a 40 lb weight limit that I don’t follow because I have stuff to do. Who likes to move one cinder block when two keeps you balanced? Do they learn that weight limit in their residency?
My favorite machine for recovering from back surgery was the rowing machine. As soon as my niece comes and gets the boxes of things she inherited from my parents, I will buy one as it’s the most complete workout I’ve experienced in one machine. Unfortunately the outpatient facility got rid of it by the time I ruptured. But that highly experienced PT said he’d definitely have me on it.
What type of weight lifting do you do? The PT who did my recovery from back surgery said she was having me do functional training so not really heavy weights but lighter with more reps and focuses on both core and balance. The PT who helped me after rupture also focused on core and balance, just different machines with lighter weight, more reps and slower pace. Both had over 30 years experience. I’m not a doctor or anything else in a medical field but you might could ask your PCP through your portal or call the RN hotline.
Alcohol, good question! I used to have to drink a glass of red wine every night I didn’t work nights. Since I ruptured, the neurosurgeon would prefer I not drink at all but she also said in moderation and no more than one alcoholic beverage a week. I might have one every 3-4 months now as it effects me differently and I don’t like my brain to not function as well as it should. There are non alcoholic versions of wine, etc Some are. good and some are ok. Again ask your doctor.
Learn to do some type of relaxation breathing, get a hobby that gets you in the zone where you just focus on the hobby and not the aneurysm. It’s not avoiding that you have one, it’s giving your mind and body a break from the stressors. Stay properly hydrated. @FinWhaleFan has recommended the MIND diet which is really a good one in my opinion.
I was advised by my neurosurgeon to stay off the internet for a year following my rupture. But after the year was over, I started researching. I don’t do FB so I think I’m lucky as from my understanding it was not a helpful place. In all honesty neither was this group back then until the folks from Ben’s Friends took over moderating it. They worked exceptionally hard to turn it around. It’s better to be able to focus on positives than being inundated by negativity. Find a positive in every day.
Stay in touch here. We know how stressful incidental finds can be. I’m sure others will come and add their experience.
Hi Richard,
Thanks for the warm welcome. Waiting a whole year would have driven me crazy. My wait for the neurosurgeon will be a month and I’ve been completely stressed out. I’m happy to hear you finally got some answers. Yes, reading is helpful for me but it also gets overwhelming at times. When it does, I take a break from it and do something else to clear my mind. Thank you for your tips. They are all helpful. Coffee though? Do I have to give up my daily coffee? I can give up alcohol and change up my exercise routine, but coffee is another story, lol. Coffee actually helps with keeping my migraines at bay. Your suggestions do give me some sense of control though. Thank you.
Hi Moltroub,
Thank you for your tips, especially about taking someone with me and gathering questions from family and friends! I lift heavy using dumbbells and a bar. If the neurosurgeon suggest a limit of 40lbs for me, that would be good enough to maintain muscle tone. My major concern is muscle loss. Most of us don’t realize that muscle loss as we age greatly impacts our overall health and longevity. I want to maintain muscle and functionality. A rowing machine sounds awesome. I may have to start back going to the gym just to use one If I’m cleared to do so. It’s very hard for me to stay off the internet, but I’m researching in moderation.
I’m not a big drinker, Although I love wine, I actually could give it up. I will also look into the MIND diet. I’m willing to try anything that helps.
Thank you,
Di
The caffeine spikes your blood pressure, so it’s better to avoid. I don’t know what the recommendations are for a brain aneurysm (I visit here as a moderator from a sister forum) but for an untreated AVM, coffee/caffeine is definitely to be avoided.
You can get some good decaf coffee these days (and some that’s a bit bleh) but transitioning off caffeine is not very easy. I’ve stayed off ever since.
I think you’ll have a tough time coming off but I’d be amazed if your coffee is really helping your headaches: I suspect your daily headache is a caffeine withdrawal headache and it is reminding you that it wants its fix. Once you come off properly, you don’t get those headaches. Honest.
Hello and welcome!!
Yes, I am the guilty party who follows the MIND diet, so happy to give some quick background.
In short, pre-rupture, I was leaning into the Mediterranean Diet, and cooking a lot of that type of food.
Post-rupture, I met with a neuropsych as part of the recovery process, who suggested I look into the MIND diet. As a result of the rupture, I have put brain health as my top priority, likely due to the fact I can better appreciate what it was like to have an injured brain, so I am trying to do everything possible to keep it in good health!
Back to the MIND Diet: it is fairly new, and is a combination of the Mediterranean Diet and the DASH Diet (for hypertension) with the goal of helping prevent cognitive decline. Therefore it is similar to a Mediterranean lifestyle with some differences. One example is that on the MIND Diet, your default fruit is berries, and you should have 5 or more servings per week.
You can read more specifics here:
Although it is still somewhat new, so the science isn’t final yet, my logic is if it based on two good diets, how bad can it be?
As with all lifestyle changes, it takes some prep before you get into the groove, but it is very flexible.
Happy to answer any other questions you may have!
My neuropsych also recommended that I take up meditation/mindfulness, and that has been super helpful to help me manage stress and anxiety, but I know it is not for everyone!
We started a topic on stress-reduction ideas, but please feel free to add others if you know of something that works for you!
The good news is it that time of year to get wrapped up in the holiday joy so you can focus on that: the time will pass soon enough!!
Please let us know how else we can help you out!!
Fin Whale Fan 
Hi FinWhaleFan,
Both of these are great resources! I plan on using both of them. The MIND diet interests me particularly because in addition to this new diagnosis, I also have a family history of Alzheimer’s. From testing, I know that I carry one of the genes for it which increasing the likelihood for me. It was awful watching my grandmother and uncle succumb to the disease. I’m going to do everything within my control to prevent it. Thanks for your support. I look forward to contributing to the community and helping others.
Di
Ohhh, @dgova, I can only imagine how difficult that was, as well as how concerning it is that you carry one of the genes.
My grandfather also suffered from dementia, and it was sad to see this intelligent man suffer from the impacts of it.
Honestly, post-rupture, I have become very interested in our brains (it is amazing what they do for us!), so it has definitely influenced my layperson reading. It isn’t too surprising that there are tons more books out there relating to brain health & Alzheimer’s than aneurysms, so two that I recently read that I like are:
https://www.simonandschuster.com/books/Keep-Sharp/Sanjay-Gupta/9781501166747
Always happy to talk recipes etc.! 
Fin Whale Fan
L
@dgova caffeine is something I still enjoy, in moderation. I’m a hot tea lover and drink a cup every morning. I was allowed as much as I wanted in NSICU during my 26 day stay and thankfully there was an RN who could make it fairly well but the Nursing student was my best friend, she made a perfect cup every time! They had to use the microwave so not boiling water over the bag like I do at home. I also have about 3 cups of coffee per morning. A bit about that in a moment.
I have to respectfully disagree with Mr. Richard that caffeine doesn’t help migraines. I have a couple anecdotal stories. When I worked in a lumber mill up in Northern California, the company supplied Mydol which has caffeine in it. The guys were always taking it, for their headaches, leaving the supply short for us. When I was in college, the BioPsych Lab professor had us all do a study on caffeine and fine motor coordination. I was in the caffeine group. It didn’t matter how much I ingested, it did not affect me. He declared me an oddity
After I ruptured my neurologist suggested drinking a cup of coffee to help with the debilitating migraines I had. Can’t say it helped tremendously but some days a cup would ease the pain so I wasn’t throwing up.
We use whole beans and grind them at home using a grind and brew. We use an AeroPress when we travel. BH is never going to give up coffee. And a great cup of coffee is better than bad coffee no matter the amount. We stopped all caffeine after 2:00 pm because it probably was messing with our sleep. I rarely drink any sodas a four pack can last me up to a year. The two I drink doesn’t have much caffeine. Could I give coffee up? Yes, probably, but I’ll never give up my hot tea! Just remember- Everything in moderation. That’s what my Neurosurgeon told me and what I try to follow.
Found this from the Mayo Clinic https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/caffeine/art-20049372
I do totally agree with Mr. Richard that there are some wonderful decaf options in coffee. We used to order our beans from GA and oh my gosh all his coffee was amazing including the different decafs. Unfortunately he went out of business when he sold his alpaca farm. We get our beans from a roaster a couple towns away who has one choice for decaf, it’s ok and that’s about the extent of it. I suggest finding a local roaster and sampling their decaf options. If it’s good, you might not notice the difference. Look for the water processed type, if you find a great one, please let me know!
It’s a thing to discuss with the doctor.
I used to drink coffee at work because the tea was terrible. It took me a long time to work out that the headaches I used to have on a Saturday were basically caffeine withdrawal. Since quitting caffeine ten years ago, I don’t get a headache on a Saturday morning, even if I sleep in for the morning!
As I understand it, caffeine affects different people differently, so the question really is what is the medical advice you get from the neurosurgeon? And perhaps, if you have a blood pressure machine at home, does having a coffee spike your blood pressure (because for some people, it doesn’t). You can test your blood pressure before and like 20 minutes after your favourite coffee. It might make a difference, it might not.
When I was at increased risk of a haemorrhagic stroke, I cut out a number of things and it made a difference for me. I do have a different condition from the folk hereabouts.
Very best wishes,
Richard