Exhaustion

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@Beth24…I think Doctors look at us with blinders on sometimes, meaning the specialists are looking at our bodies within their specialty and rarely the whole picture…that job falls on our PCP. For me, my PCP tries to connect the dots with all my symptoms so she can send me to the correct specialist.

When I was released from Neuro ICU, the young woman who does the paperwork had written down I could return to work in two weeks. We are still not sure where that came from…I walked like a drunken sailor, couldn’t put five words together as I’d forget three, went to the ER and couldn’t remember how to sign my name. I knew my name, just no signal from my brain to my hand and this was a couple of months after getting out. I finally looked away and there it was! Muscle memory must’ve taken over. About eight months later, I finally figured out how to navigate stairs. Imagine a small child and the way they raise their foot too high and if not for their small feet would over step the stair tread, that was me, but my feet aren’t that small. I would avoid stairs at all costs because it was frankly dangerous. I bought bright shoes that would be a high contrast which helped. A couple years later, we had gone on a trip to the Coke factory in Atlanta and we had to go down some stairs. My brain didn’t figure out I was on flat ground for several steps. If not for our nephew and BH, I’d have fallen flat on my face.

It’s been a long road and my memory is still not that good but it is a lot better. BH had an ischemic stroke and now I ask folks: “What do you get when you put an ischemic and hemorrhagic stroke survivor together? I forget.” ROFLOL

All the best,
Moltroub

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Hi! I am about 7 weeks out from having a PED(Pipeline Embolism Device) placed. I was dx on May 3rd with an unruptured fusiform PCA 7mm aneurysm. I am VERY lucky and blessed this was found prior to rupture. This was a rare and hard to treat aneurysm. Mid June I had a flow diverter pipeline stent put in. I had to take baby aspirin and plavix for 2 weeks prior to the surgery and am still on both. Not sure how long I will be on the plavix but the baby aspirin for life. As far as we can tell the surgery went pretty well, will know more in December when I have an angiogram. I am having extreme fatigue, headaches(sometimes I put a cold wash cloth on my forehead they hurt so bad) and vestibular issues(vision,balance) and some processing/memory issues but for the most part doing pretty good, considering. I just feel lucky to be alive. I do struggle with anxiety now, which I’ve never had. Things like not sure if the aneurysm is shutting down, will the stent get blocked, what if I run out or forget a dose of my blood thinner medication, are these side effects permanent…all are worrisome. I too work in a school, Im a spec ed teacher and just went back to work. Im exhausted and have a bottle of Tylenol with me at all times. I had 6 weeks to recoup over the summer and wish I had more time. When you read things online about typical recovery I don’t seem to fit in that, definitely taking longer. I hope you start to feel better.

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Hey Kiona,
“…When you read things online about typical recovery I don’t seem to fit…” Me neither.
I too was given the ‘6-8 week’ recovery timeline and got really down on myself when I couldn’t reach that timeline. I (metaphorically) beat myself up for not meeting those recovery milestones. I kept pushing myself to recuperate, but I pushed too hard, too soon doing myself a greater injury, requiring further neurosurgery. I have now had 6 neurosurgeries and none of the recoveries have been the same and even years later I still seem to be on a rollercoaster of symptoms. The medical theory is ‘All fixed’, but this if FAR from fixed.

What I have found is that there is no such thing as a ‘Normal’ recovery time. It takes as long as it takes. Some dr’s will give us a ‘Best case scenario’ and make it sound like this is the norm. No 2 brains are wired in exactly the same way and no 2 surgeries are exactly the same and therefore no 2 outcomes are exactly the same. Some people bounce back relatively unaffected, for some it can take a bit longer and then for others there can be life long issues. This is why I say “there is no such thing as a ‘Normal’ recovery time.” Your recovery takes as long as it takes. Patience is the key. I can have great patience with others but much less so with self. I want it right and I want it right NOW!!! But my pushing to meet that ‘6-8weeks’ I’ve done myself more harm than good.

Listen to your body, it will tell you when enough is enough, but only if you listen.

Merl from the Modsupport Team

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Thank you for that feedback. Its very true. I guess also if I had a cast on or something it would make sense as to why I couldn’t walk, but when it’s in your brain and the injury isn’t visible you forget or people don’t see why you can’t do something or are tired or having a hard time. And it makes sense that the brain takes a while to heal, it’s the largest muscle in your body. Thank you again, this is a nice resource:)

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Hey Kiona,

Ohh yes, yes and YES.
I’ve often said “Sometimes I think it would have been easier if I’d lost a limb, people would be able to see why. But being invisible nobody can see” and one thing I hate is when people tell me ‘Ohh you look awful…’ I just love being told I look the way I feel. I want to tell them (and sometimes do) ‘You want to have a look from this side. What you can see is a fraction of what I’m trying to manage…’ but more often than not I give a weak smile, apologise (as if I have any control over it all) and say something like ‘Yea, I’ve got a bit of a headache…’ If they only knew. I have in the past tried explained it all and then I get those ‘Ohh you poor thing…’ looks and comments, but those ‘Ohh you poor thing…’ sympathy comments get real old, real quick. That line ‘I’ve got a bit of a headache’ shuts it down fairly quickly because, well, everybody gets headaches. Right? Not like this they don’t.

I agree in that does take time for the brain to heal, but the brain is not muscle but rather a large bunch of electrical circuits jammed inside a sealed unit, our skulls. If it was muscle that ‘6-8week recovery’, which is often quoted, would be about right. I have often compared the brain to our body’s computer system. If you opened your computer box and threw in a hand full of aluminium foil flakes you’d have short-circuits all over the place. In VERY layman terms the medicos have opened that box (Our skulls), disturbed those microfine neurocircuitries and the result… OMG, it can be never ending.

Merl from the Modsupport Team

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Merl, that’s a great description of our brain being basically the hard drive and containing all the software. We don’t see it, often don’t know all the commands that the programmers wrote and when there’s a glitch in the system, it can effect most everything. Well done!

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I feel exactly the same. EXHAUSTED

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One of the many decisions I made while in the hospital for my two unburst aneurysms was the need for me to flatten my timeline and stick to the philosophy to the best of my ability. If I slept for 4 hours, stayed awake for 30 minutes and went back to sleep for 3 hours, then that’s what I believed my healing process called for.

Also, I agree whole-heartedly with both the computer analogy AND each of us being unique–thus removing any reason for “normalcy” as it relates to each of our recovery travels. I am a retired web developer, so my own imagination can run out of steam pretty quickly when trying to ponder the “coding” of my brain–let alone anyone else’s.

While I don’t recommend deviating from medication-related timing, the rest of our healing process will not run on a fully documented, 24/7 pattern already pre-planned for each of us. For example, I will take a nap whenever I hit my limit, including putting my head down on the desk for even a few minutes, let alone an hour or two just to make it to dinner time. I also am usually quite forgiving of myself for those moments I feel measures of guilt, but there have been a few times the guilt was harder to shake than others, which is quite okay and expected, in my book.

And although I haven’t had headaches similar to what has been described here, it would not/does not surprise me the medical community is struggling to directly associate the events with the surgery. I was told my symptoms were not related to my event, but it’s hard not to believe my dizziness and nausea wasn’t a direct result of where they discovered the aneurysm (behind my eye), it’s shape (the darn thing looked like a bean!) and the subsequent “snapping” I know I felt just prior to the symptoms.

In other words, I agree with the notion of not worrying about the clock when it comes to your personal healing process, trusting your gut and talking about your experiences with others–it is a formula that has helped me through a number of challenges during my own lifetime, including the experience that brought me to this forum in search of answers a few months ago.

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Fighting the good fight, absolutely :100:! As I just wish to have a day, week a month feeling like myself again. Tired of being tired :tired_face:, tired of feeling weak, need my old self back she was always active. Not a homebody before a case of Hyponatremia where the MRI displayed an incidental finding of my unruptured Aneurysm. I would tell you where it’s located, only I’m not sure of the proper medical description, it’s on my Right side within a Carotid Artery that’s in my head, maybe just above my ear. That was over a year ago, I was tired afterwards and my Neurologist and his staff were great they helped me to get up and keep going. Because they made me believe I could I got up and going again. There were days I was tired and days I’d just keep going, feeling my best. About 2 weeks ago I underwent my 2nd Angiogram and that left me feeling tired, still feeling tired, sometimes I get headaches (like Migraines). Spoke with the Neurologist about them and the Dr believes they’re Migraines. The most difficult part about the whole Aneurysm problem is that you feel so alone, no one seems to understand what you are actually feeling.
Glad to find this group where others actually understand, thankfully. I don’t think my family realizes that life is different for me now. That somedays are somewhat okay and others I can barely get myself up, showered and out of the house. Sometimes I just throw clothes on an get out of the house, because it’s good for me to get some fresh air. I want to get back into being me and so I try fighting the good fight to be a better me. Thank you all for being here, together :heart:.

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Welcome again! Happy to see you’re posting! Sounds like your aneurysm is in the right internal carotid artery or RICA from your description.

When I’ve had an angiogram, it’s the dye and the anesthesia that get to me. I have to hydrate enough to flush it out. Always three bottles of a sports drink, the large ones, and twice or three times the water for a month or two. It helps me a lot.

This last angiogram, I went into severe anaphylaxis and my Neurosurgeon ordered a high amount of the IV solution to get it out. The CMA decided it was wrong and was going to lower the drip to what he felt was correct, I kid you not. I got on him like white on rice! BH was trying to get me quiet but I wouldn’t respond to my cues.

I may have inquired to his medical degree or perhaps a degree in mathematics in not a nice way, something might have come out regarding his degree and a box of Fruit Loops…. gave him a lecture on his educational level vs Dr. Quintero-Wolfe’s. The RN came in quickly and told him not to adjust it. She had in fact just received new orders from the Resident that assisted during the angiogram to up the drip. LOL

So if your sluggish try hydrating a bit more, talk to your doctor about how much…

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Thank you for sharing this experience you had with your Angiogram. This was my second Angiogram and I had no problem after the first one. This second Angiogram recovery is completely different. I’ve had terrible headaches, conplete fatigue, dizziness :weary: and unable to function normally. I have spoken with the Neurologist and have a follow up appointment on September 6th. I am looking for answers I don’t believe that it’s normal to feel this way after an Angiogram.
I drink alot of water, yet when I came home after the last Angiogram my mouth was extremely dry and I fell asleep. I couldn’t stay awake to drink water. I appreciate you sharing your experience with me. Hoping to feel better soon. Thank you

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Ask the Neurologist if it may be due to the anesthesia. The more times I was put under, the less the Neurosurgeon used as it really messed me up and for a longer period of time than the previous procedure.

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Two days after my endovascular procedure (FRED flow diverter in my left anterior inferior cerebellar artery) I woke up at 2 am with my head on fire, and my left ear pounding. The next night I could not sleep laying down either. Apparently, laying down increases blood pressure to the head.

My neurosurgeon diagnosed this pain as my 17 mm aneurysm shrinking very fast, which is one possible cause. But I also just think there are many things going on in those arteries and brain/skull territory which can lead to a lot of tension/readjustment. In my case, the flow diverter likely increased pressure in the distal parts of that artery (angiogram showed that my saccular aneurysm was just dribbling blood to the far side of the artery).
In addition, there’s got to be some stretching of the artery from getting the FRED stuffed into it.
There is also the factor of “compensation” where the arteries try to balance out the blood flow into the brain. That’s got to be a lot of work for the body/brain to work on.
My neurosurgeon gave me a strong steroid Methylprednisolone; the next night the pain was almost completely gone. So apparently I had a lot of inflammation in those arteries.
I am now on the 3rd day of a 5 day course of Methylprednisolone.
Pre-procedure week I had a headache in the front of my head especially, as a result of taking the Paxlovid. I am now on Brilinta. Some of my headaches post-procedure feel very much the same as the pre-procedure headaches (i.e., the result of the blood thinners.)
Looking a computer definitely increases the headaches. I think it’s a lot of work for the eyes/brain to do. The body must pump a lot of blood to the brain in you are doing mental work. Maybe the blood pressure increases ==> pain increase.
A friend suggested just laying down in a dark room with eyes closed and wash cloth over face. That immediately helps with my headaches.
I’m hoping my headaches go down with time. I will update this post.

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Thanks for the update and all the food for thought!

I’m not sure about this:

I think it may have more to do with our eyes and the light on the screen. Try this 20-20-20 Rule: Does It Help Prevent Digital Eye Strain?. Headaches are on the list

I love methylprednisone, well love isn’t the right word but it’s close as I can’t take prednisone due to some nasty side effects. My Rheumatologist put me on it for a pretty bad flare up and I was able to take it for the full course. Her office called every day to make sure I was tolerating it. Something I can’t do with prednisone and the doctors have labeled it as an allergic reaction for me.

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Oh i LOVE that joke! Thats my new phrase…“um…I forgot”. Not because it’s the easiest or the most simple, but I actually forgot, and even if you gave me millions of dollars, i would not be able to remember. 6 months later, I’m getting used to it.

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I had cerebral 9mm aneurysm, had a clipping done in June 2021 over a year later I am still so exhausted all the time Dr says it has nothing to do with this definitely, does anyone else have this?

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I had surgery in 2021 a clipping of 9mm aneurysm. I am still so exhausted and have headaches frequently but surgeon says not related absolutely related. I only work 20 hours a week now because I am so exhausted after I am done work I come home I lay down.

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I was exhausted for years after…my annie was unruptured but nearly giant in size and took two same-day procedures to get all the PEDs pipelined together and also coils put in. I had headaches after also. I love my neurosurgeon but the whole “headaches aren’t from this” line still popped out of his mouth lol. He said to find a neurologist and I never bothered. There’s nothing they can do. I didn’t want meds. The headaches finally went away though - about the time I got permission to quit the stupid daily baby aspirin to see if it would help my iron deficiency (in case I had a small bleed somewhere). That was about six years after surgery, and another four (almost five) years since. The exhaustion came to a head with the iron deficiency diagnosis. No telling if that was all it really was or if some was from the surgery. It was intense though, the fatigue.

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Hey Farmwife,
That ‘exhaustion’ is actually REALLY common for many neuro patients. It’s unlike your normal draining tiredness, this can take you way beyond anything like ‘normal’ and as for that line ‘…it has nothing to do with this…’ Ohh that’s REALLY common too. The neuros told me ‘We operated, we fixed’ all congratulating each other, but this is far, FAR from anything like ‘Fixed’ and rather than acknowledging any issue they simply put it back on me, “Well, it’s got nothing to do with what we did… …It must just be YOU!!!” like we choose to be in this situation, it can be so infuriating.

One of the recovery theories is that post injury, 6-8weeks later and the body has healed and for muscular/skeletal injuries 6-8weeks is about right. But we’re not talking about muscular/skeletal, we’re talking about brain matter/electrical circuits and the healing/recovery is completely different. I’m often saying 'Some people bounce back really well, some can have some recovery issues, but then for some there can be lifelong issues and the medicos don’t know why."

I have found that when it comes to neurology, if the scan looks good, then everything is good (according to them). Our reality maybe miles from good, but the scan looks good, so all is OK. I have endured 6 neurosurgeries and still they put it all back on me. As one neuro stated to me “I’m the neurosurgeon and I have done years of study, so I know. You? You’re just the patient, you wouldn’t know…” Luckily my wife was with me because I was so tempted to punch the man in the nose. Arrogant sod. I know excruciating pain and their response "You just have a low tolerance to pain…’ What I now have is a low tolerance to arrogant medicos. Honestly, they have no idea just how bad, BAD pain can be. They, themselves, have never been in this situation, never had to manage such pain but still they profess to know all about it.

I’m sorry to say I don’t have any ‘magic answer’ or ‘miracle cure’ for the headaches (If you find one please tell me). I’ve found all I can really do is manage the ‘Now’. If that means ‘Rest’ that’s what I do. If that means ‘Medication’ then that’s what I do. I have to manage all of this for me. Not the dr’s, not the surgeon and not everybody else who wants to have an opinion. I have to manage the best way I can for me. Do I like it? HELL NO. But the reality is I have no choice. My body gives me signs, if I ignore those signs it tells me ‘Laydown or I’ll put you down’ if I still ignore it, it puts me down HARD, often taking me days to recover from in a dark silent room.

I’m 9yrs on since my last major neurosurgery and still today it can be a huge balancing act.

Merl from the Modsupport Team

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@Farmwife welcome! I’ve only had four endovascular procedures plus the angiograms that go with them. I think our headaches our due in part to the rerouting of electrical impulses (neurotransmitters) that occur whatever procedure we get. I tried a bunch of meds at first and didn’t like the side effects. I told the neurologist I had at the time to stop with the shotgun method and his reply was he didn’t know what else to do but to keep trying different pills. I believe he diagnosed me with atypical migraines. I told him to stop trying lol. I had non stop migraines for around two years following my rupture. My neurosurgeon alway inquires to have you had enough protein, what have you drank and did you rest. So now on the rare instance I get a headache the first thing I do is hydrate, then I consume protein, hydrate some more and rest. She has never told me that the headaches weren’t caused by the rupture but she did tell me she didn’t know why they wouldn’t stop, with several theories. But Neurosurgeons aren’t the ones that deal with headaches it seems, that’s the Neurologist’s area of expertise.

I do agree with @Sarah_D on getting complete blood panel done with your PCP, they’re always a good place to start.

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