The 30 degree angle is a lifesaver— last week I was waking up with double vision (it would disappear within seconds) and my neurosurgeon suggested going back to sleeping with a slight incline to reduce the stress on my brain. It was an instant fix. Quite fortuitously, we already had a remote control incline bed before rupture. It has been an absolute lifesaver since all of this has happened to be able to sleep at an angle with ease.
You are right that each day is different and you never know what to expect! I woke up today feeling wonderful. Absolutely crazy how one day is different from the next. For me the hardest part is reminding myself that having a bad day doesn’t mean I’m not making progress.
Currently I take Tylenol when I just cannot shake the headache, otherwise I’ve found hydration, diet, and a good night’s sleep is by far the best remedy. Perhaps I’ll try more recommendations when I can nail down a pattern— as of now they just seem so sporadic!
HUGE +1 for that line Karly.
Initially, I thought that a bad day was a backwards day and I’d (metaphorically) beat myself up for it. I’d analyse what I’d done, what had caused me to go ‘backwards’. If I could identify a cause, I could accept it easier ie don’t do that again. But when I couldn’t find a cause I got frustrated. It can be a really fine balancing act sometimes.
Hydration, protein, hydration and rest with more hydration is basically my Neurosurgeon’s mantra. At 3 months out from rupture I was having to drink 3 bottles of Gatorade and twice that in water plus try to do minimum 90 grams of protein each day. Check with your surgeon about the amount you should be having. In fact for every angiogram I had to have the Gatorade or sports drink and water. I worked at a plant that made Gatorade during the off season, I used to could tell you what the mix was for different flavors per 1000 gallons😂 I also noticed that after rupture some foods could increase my headaches so pay attention to that.
I think it’s wonderful you have such a bed! I think all brain surgeon’s should write a prescription for one, as quick as possible😂. For those that don’t have a bed that inclines, they can try the wedges or if they’re handy, they could make one.
Acetaminophen (Tylenol) can have some nasty side effects on your liver if you take too much, it’s really good that you’re reaching for hydration first!
@karly
It’s good to hear that you listen to your body. My personal experience is that it takes a L.O.N.G time to recover, the problem is that we don’t know “how long a long time is ”……The pattern you describe seems familiar to me, you feel fine, you go on with your day and then you hit the wall and feel miserable. My husband helped me to measure my progress by comparing month to month while I was measuring day by day. It took me a while to understand how much time I needed to recover. I could walk three miles in a fast pace without problems but other activities would wear me out.
For a 30 year old it is not common to slow down and rest or take a nap but after a brain bleed and additional surgery I think it is necessary. I had a hard time to accept that myself and I am more than twice your age. For me everything got better with time, after one year I had more energy and now more than two years after my rupture I am almost back to my old self. I say almost, because I sometimes have days when I need to take a nap.
I still remember when my neurosurgeon told me that most of the brain recovery takes place during the first year after the rupture, but it doesn’t stop there, it continues. He also mentioned that we get better at accepting and adapt to our new normal.
What I would like to tell you is that don’t loose hope. I also think it is important that you discuss some of your symptoms with your doctor as you already have done. This forum is so important to all of us, to share our experiences and to know that we are not alone.
Remember “slow and steady wins the race “ you are still so early in your recovery.
I wish you all the best.
I have another appointment with a different neurologist on the 22nd. I’m actually in the emergency room now bc I woke up and my equilibrium was messed up. I kept falling towards the right. (Not falling but going towards). And if you know how it feels when you’re drunk (spinning) it was a different spinning. It felt more like a clock spinning instead of flat plane spinning. ( The best way I can describe it) The doctor came in and said that he thinks I’m having temporal lobe seizures from the damage he sees to my brain. But when the nurse came in with my discharge papers she said that he diagnosed me with Vertigo. So I’m starting to freak out on her bc the doctor never mentioned vertigo when he came in and now she is giving me this paper that says something completely different. But the way she explained it to me was he can’t diagnose me with seizures bc he isn’t qualified and you need to have tests done with the sticker things all over your brain. So basically what I got out of it is that they pretty much diagnosed me with whatever seemed plausible within their qualifications. If that makes sense. Idk but this is really starting to get me stressed out and even depressed. Has anyone else had to go through this?
I have a bit of history of running into walls after I popped my pipe. It continued for seven years, the stent has mostly stopped it. Dizziness stopped with the balloon assist I think it was. One of our members, I think @CharlesDWM had posted about things our brain does after rupture. I will try to find it. He had shared a YouTube video a couple of months ago that dealt with how our eyes really need to be checked. I learned a lot of answers from it, like why I always veered to the left (almost walked into traffic in downtown Atlanta visiting friends) and why I didn’t register traffic signals (I almost walked in front of a taxi in D.C. a few days after procedure #3. Some lady spouted off that a red hand means stop in any city. Well I live in a rural area and we don’t use hands for traffic signals, we call them red lights. Imagine her surprise when Kevin said hey to me at the get together a few minutes later in prep for Lobby Day. Kevin was surprised to see him since it had been less than a week from my procedure. I imagine she learned to keep comments to herself )
The first time my brain was connected to electrodes, I talked the whole time until the tech told me I had to be quiet😂. It was incredibly difficult for me not to speak back then, still can be an effort. My Neurologist who ordered it couldn’t read the results and had to have a colleague do it. She said I slept through most of the procedure and I told him she was wrong so I wasn’t going to hold her opinion with much regard. I also told him to ask the two that were in the room with me. He said he had to go with what the results were and I became angry as a copperhead that he wouldn’t pick up the phone or walk next door to the hospital and simply inquire. He was so calm, though surprised at my outburst and said he had to do what he had to do. I remember seeing bright lights in color when there was none per the tech doing the test and they made me want to run and vomit. Apparently she didn’t make note of it for the Neurologist doing the reading. The Ophthalmologist in the YouTube video answered those questions basically.
Someone told me about a doctor who does scans over in Charlotte that can show a person the areas of brain damage in color. I’ve never done it and I always forget to ask my Neurosurgeon who just tells me I have a plethora of brain damage on both sides. The radiologists who do my images apparently don’t have the computer program to do the colors. If I ever remember to buy a lottery ticket with the winning numbers, I think I’ll donate a portion to them just so I can see the colors😂
They told me I had vertigo at the hospital. I went see the neurologist and they did another TCD and my left side velocity was still high but in the normal range. They went ahead and did a bubble test and they found a lot of showers in my brain. They said I have a hole in my heart, grade 4 possibly grade 5. I went back to see the neurologist who handles vascular and they did an Echo of my heart and another Bubble test. The ultrasound of my heart showed a valve that separates the left and right side of my heart opens and closes like a jump rope instead of like a hula hoop. So that allows blood to transfer from the left to the right. They explained that the heart shoots up the blood that transfers over to the brain. 1 out of 5 people have this hole. Some bigger than others. People with this hole have a higher risk of strokes and headaches.
I asked if this could also be a contributing factor for the aneurysms. Bc I’m thinking if the vessels swell from high blood pressure and my heart shoots blood up to my brain that it could make the aneurysm or even pop it. But she blew me off and was like the high blood pressure swells and thins the vessels. Well duh just like you stretch a ballon before blowing it up so it expands Idk…it seems logical to me. But of course I’m no doctor
I have my appointment on the 16th for the EEG so hopefully they can see something. The night the time changed I went to bed late and my dog was barking to go outside so I had like 2 hours of sleep. I got up to go pee and let her out and kept a low light on in the bathroom. When I was walking out the bathroom I saw light flashing almost like lightning flash a few times. Idk if that is a seizure like they are talking about but hopefully they find out.
Also not trying to give TMI, but ever since my aneurysm’s ruptured I been having very painful menstrual cramps. Like can’t get out of bed pain. I had bad cramps when I was a kid but that went away. It came back 10x stronger. Idk if my brain damage could cause that but it fucking hurts.
From my experience you are highly unlikely to get a concrete answer to that one. Some may see a correlation, some may not. After a few neuro procedures I seem to get all sorts of odd pains, some very painful. When I’ve gone seeking answers none of the neuros accept any correlation ‘…ohh that’s got nothing to do with anything we’ve done…’.
I saw an ophthalmologist for an eye issue which the neuros identified as a ‘possible’ contributor, but the ophthalmologist stated 'Well, you’ve had brain surgery…What did you expect?.." so all they were doing was finger pointing at each other and still no answers. I’ve had lots of medicos give me the 'It could be ‘X’ or it could be ‘Y’ type of answers, but nothing confirmed as to cause of ongoing issues.
It can be very frustrating at times, but my only recommendation is to follow through with any medical advise suggested and document it all. Going to differing specialists often tests/treatment regimes get repeated, having it documented can help reduce this repetition.
I just wanted to second what Karly says above: “you feel fine, you go on with your day, and then you hit a wall.”
I did not have a rupture, just a stenting procedure, but I have the same running out of “brain energy” experience: I get a headache and then something tells me “that’s it for the day.” “Brain is done for the day.”. I just can’t summon energy to do anything else. I am having a difficult time keeping up with my computer job. It has been about 5 months since my procedure.
It’s hard to tell when the exhaustion is going to hit, but for me, by the end of the week I am usually shot, and I MUST take a full weekend day to do nothing. Don’t look at the computer or the phone. Try not to watch too much TV. Don’t do too much with the family.
Audio books and listening to YouTube videos have become my best friends.
The more you heal, the more you try to push yourself to do things, but that gets you into trouble because you over-extend yourself and your brain energy.
It is not a fatigue like other fatigues. It’s just the brain saying “I’m done now.”
Part of this might also be due to blood thinners. Which I hope I get off soon. I am on Brilinta
Great support and stories shared. I would only add on point I noticed in the years since my surgery – I am very in-tune with my body. Sometime scarily so. I rarely have had headaches after my Annie burst, but when I do, I pause to determine why. Not all of the symptoms I experience are Annie-related, though, particularly at first, I would think they would be. I do agree with the many commenters that advise: take your time. I was fortunate in that, because I was unable to work, I was able to live with my mother after the burst and she (being a nurse) made me take life slowly. That was much more help than I realized and let my body and brain learn this “new me.” But you will heal. And you will probably be able to do more than you have ever done. Healing slowly made me stronger physically and emotionally so I was able to be in society when needed, and aware of myself to know when I needed to pull away and have quiet time. The need for quiet time will diminish with time, but please embrace it now. And soon, you will be back to doing all the exercising you are used to without any side-effects.
And pat yourself on the back for asking – I never did and have felt very emotionally lonely in my world of confusing isolation. Keep up the great self awareness and strength-building!
I noticed immediately that inclines helped me as well. Unfortunately, I had great difficulty sleeping that way.
A number of doctors told me that the pressure in your head increases if you lie down. I think this is both blood pressure and cerebral spinal fluid pressure.
Thank you for your comment @KrysG — I have to say, this support group makes all the difference in recovery. To know you aren’t ALONE! Gosh, what a feeling. Or I suppose I should say, to know there are others out there who can relate to the fatigue, the pain, the pressure, the headaches, the experience in general… when the rest of your support system can’t, as they’ve never felt it… it’s been remarkable and a true pleasure to connect with other survivors.
This last month I have made more progress than I ever imagined possible— I am running errands, going on 45-1 hour minute walks with my dog, even back to going to the gym (usually not all of these in the same day and still with plenty of rest!), but these are milestones I didn’t expect to hit this early. March 18th marked 4 months since my rupture, 2 months since my stent procedure.
Next month I turn 30 and can feel myself becoming stronger mentally and physically than I ever have been before.
I am so sorry to hear of your experience @Momof2. I truly hope you find some healing!
There’s a lot of theories out there in why aneurysms form, I don’t think they have figured it out 100%. After I ruptured, I had beautiful filigree lights for a long time, they were distracting to say the least and hindered me driving until they subsided a bit and I became a costumed to them.
I’ve personally only known one person with a hole in his heart, (BIL), he was born with it and underwent many surgeries in his youth to correct it. He never had any type of aneurysms that we know of.
When a doctor tries to blow me off, I call them on it. I remember one who had the audacity to tell me I couldn’t spell what he diagnosed me with so not to even try and then his office person tried to tell me that I had to arrange my work schedule around him and the PT he wanted to send me to which was part of his umbrella. I calmly explained that I was a customer paying for a service of which I needed to work to pay, so no, they would arrange my appointments around my schedule. She and the doctor were quite upset about this and I again calmly explained I would find another… it’s a good thing I didn’t meet them after I ruptured as I wouldn’t have been so nice about it I imagine. Fortunately now, I have no doctors that do this. They all give me the time I need to understand what they are saying and they all realize that I may forget by the time I hit the door to leave so they allow me time to type in answers on my phone next to where I keep the questions I have for them
For your menstrual cramps, the brain controls a lot of things md when we rupture it has to either repair or build new neuro pathways. It may or may not be a contributing factor. You might want to touch base with a GYN or PCP…heck it could be a side effect of any meds you might be on, so check those out or ask your pharmacist.
Due to severe allergy to crab meat they pretreat me with mega doses of Prednisone starting 24 hrs to procedure then an hour prior Im given a prescription antihistamine to take. I’ve not had any dye reactions and I prefer it this way. I carry EPI pen due to crab meat.
I’m allergic to shell fish as well😩. I do challenge the odds and can eat three or four shrimp during certain times of the year😂. I used to get the Prednisone pretreatment and take one benedryl right before I went in for an angiogram. Fortunately or unfortunately, I can no longer have any angiograms as I went into severe anaphylaxis with the last one. I do blame the RNA who didn’t give me the shot of dexamethasone prior to the procedure. She told my doctor she didn’t think I needed it because I premedicated. My doctor had to tell her to give me the shot of benedryl which she had and then go get the dexamethasone which she failed to have. I remember my Doctor, her NP and the Resident all breathing with me to keep me calm. My brain was laughing but I couldn’t talk so I just gave thumbs up and hand waves. I think because Ms. Helen started putting it in as a standing order and retired, the new RN that does the scheduling didn’t put it in as I’d had the extra shot three angiograms previously. The NP has put it in as a standing order if I need another angiogram to save my life.
It was my third angiogram and second coiling after rupture the Doctor that assisted my Neurosurgeon suggested BH carry a bottle of Benedryl and I take one or two prior to being wheeled in as a precaution and I can get it faster whilst waiting for the shot.
The people in the CT scan place put in my chart that I was allergic to the dye used and for me to be pre-medicated prior to administering dye for testing.
I’m glad you added what occurred with you as I worry avout it all the time. I will always insist on being pre-medicated as I had played it off some with last angiogram. No more.
Please tell all your doctors about your allergies. I remember when I had my first CT for an unrelated issue decades ago. They used iodine and I turned beet red like a cooked lobster. The tech was worried but the Radiologist sent me home telling me to take Benadryl until I felt better. I ended up taking an entire bottle. Had to put allergy to iodine on everything medically related. It only helps if the doctor is paying attention though, almost lost a finger when a company doctor wrapped an injury using it.
HI, KARLY I hope you are well I see this is an old post, 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
Wow! Thank you for your comment and congratulations on your 10 year anniversary celebration. It sounds like you have a lot to celebrate and be thankful for.
It still surprises me how unique of a club we are in, how much we have all been through, and how each of us is so incredibly resilient.
I have just recently had my second angiogram and received the all-clear from my neurosurgeon to stop blood thinners— very thankful for this after taking them for 17 months!
The first six months of recovery after rupture were some of the most trying of my life so far, but today I am thrilled to feel completely back to my pre-rupture self, focusing mostly on exercise, steps, movement, nutrition, and attempting to keep unnecessary stress low.
Thank you again for sharing your experience and so thoughtfully reaching out.
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This community is special.