Brain Aneurysm

So 2 weeks ago I had a ruptured brain aneurysm and spent alot of time in ICU. Thankfully I am recovering after surgery to insert a coil and a VP shunt. However I have also had 2 MIs (1 every year for the last 2 years) due to SCADs. I have a form of EDS and was waiting for genetic test results. After waiting a year, it became apparent that my blood sample has been lost. So need to have it done again. I am exhausted. After my MIs I had head to hip MRIs which told me I had no risk of antheuysm . So confused now. Pain is awful and when went back into hospital because of pain docs have labelled me drug seeking because I had just taken some paracetamol!!!

How do we stop being gas lighted by male docs??

Hi, my name is SnoozyRooster7269. I've been diagnosed with brain aneurysm, spondyloarthrosis and bulging disc

#MightyTogether

So, all those hashtags are stuff I have thought this is but apparently it's really something else... although I do have the seizures.

For years I have thought I had all this stuff and sometimes I just passed for apparently no reason besides that my head apparently likes the floor. I always got a whole batch of seemingly unrelated symptoms, often at the same time. The real winner was the crushing headach (I mean really impressive) with nausia, dizziness, and sometimes confusion or difficulty speaking, or memory loss. But this came with a bunch of scary level "allergy" looking symptoms too.

There has also usually at least seemed to be an "alergy trigger." That
has usually been a water damaged building or bread baking, although deasil fuel absolutely hates me, as do some perfumes, and second hand pot. Also, just plain exercising in cold air does bad-bad things. The result is a bunch of surpluss mucus in all the wrong places, a serious tightness in my chest, a cough that just wouldn't let me catch my breath. I have passed out plenty of times, or else had periods of time I can't remember, and then there would also be inflammation to follow, usually sore joints and just bone crunching exhaustion.

I never got a real allergy test because I guess I was raised to be tough (not in a good way) and, the allergy wasn't life threatening ( I have had people conclude otherwise, but I always took it for granted this thing is survivable). I figured, what could anyone do about it anyway?

A few times friends bundled me into an emergency room, to get checked for a brain aneurysm, stroke, cancer, or a concussion, but when nothing showed on the scans the hospital staff was usually shockingly disrespectful and I guess I just didn't like the implication that I was "faking," "wasting their time," or "being a sissy." That stuff was always getting thrown around both in medical settings and at home too, especially when I was still a kid, though it continued as an adult (on the few occasions when I did try and get some help). I absolutely felt guilty for being sick and kept it to myself as much as I could.

Milder forms of this kind of symptoms were already part of my life when I was 7 or 8, but as an adult things have mostly gotten more dramatic. These days I am dizzy (at minimum) most of the time, I have also had car accidents during periods of time I am pretty sure I can't remember. I currently don't drive because I'm scared of killing someone by accident.

I don't go places where I might encounter the stuff I think are triggers. A lot of those are fun places that I really want to go (restraints, breweries, concerts, people's houses), but the simple fact is that accidently convincing everyone I might be iminently dying of a brain aneurysm (that seems to be the go-to bystander assumption when I have a bad eppisode) is about the most surefire way there is to ruin a perfectly good evening FOR EVERYONE (especially me, obvs.)

I also don't want to go to the ER for scans that show nothing and staff that are rude, and so there is usually a big argument between me and whoever is around. Durring that argument I'm probably not actually saying anywhere near all the words I'm thinking, and if I'm conscious enough, getting enough air, and also not puking, then i'm probably heavily slurred. A lot of the stuff I'm reporting is stuff I don't remember either. People tell me about it afterwards.

This experiance is a lot like having been really drunk, but without the alcohol. Whatever I'm saying, during one of these episodes, nobody is particularly inclined to think much of my judgement at the time, also, much like if I was drunk. That said, as the years have passed, most people who are close to me have gradually learned to accept that the emergency room is going to be a way to spend all night and a bunch of money being really uncomfortable, to no result.

Recently, I started to see a therapist for PTSD and she started to get nosy about why I don't do most of the things I want to do. These days I mostly stay home, full stop. Keeping me employed in a way that doesn't constantly trigger my symptoms has proved to be either impossible or just more trouble than the pay is worth. My wife has a good job, a sec onds income would be nice, but we don't really need the income, though my ego definitely wants that, and so much else that isn't comparable with having PTSD and a mystery disease. Part of the reason I stay in is the result of the PTSD that got me to see the therapist, but a lot of it is that I'm just scared of encountering mold, bread, diesel, pot smoke, etc. and ending a perfectly respectable day with an unwanted trip to the ER. Sure, at this point that might be a perfectly respectable second reason to have PTSD, but my therapist started pressuring me to see an allergist, in the hope I might get allergy shots and just end up with less risks to worry about.

My wife also finally saw me pass out, on Christmas morning no less, and what she described was textbook for a seizure. This is the first time I have gotten a clear description of what it looks like when I am out. My doctor gave me referrals to both an allergist and a neurologist.

So, just a couple days ago, I went to the allergist. What he told me has me absolutely shocked and confused. The allergy tests he did were almost all negatives and nothing that was positive was really, really strong positive. What he told me is that it's probably my nervouse system that does all this weird stuff, even actually triggering off stuff like mold, yeast, diesel, perfume, etc. much as if it were an allergy, but just neuro, not an allergy.

It really sounded like this allergyst didn't have much real information. He is an allergist though, not a neurologist. I do have a consult with the latter coming up, thanks to the Christmas seizure thing.

All the allergyst really told me was that the condition he thinks my nervouse system has usually gets worse over time and that I need to keep avoiding all this stuff, which feels like half the world, to try to minimize how fast things get worse. On one hand I'm actually more glad than I can express to have somebody just finally say they have heard of other people living like I do, but I'm also just stumped and confused because this is absolutely the first I have heard of this. I'm also scared of this getting worse and sad to still get told nobody can actually make my situation work any better. Has anyone else on here heard of this condition?

Ranting with my chin up: Being sick is confusing and frustrating as heck.

So it looks like I had a very classic seizure at 3AM on Christmas morning.

Ok.

That's actually not much of a surprise. I'm actually rather used to being told that I *might* be having seizures. I have weird neuro symptoms very often and fall on the floor pretty regularly. I have had a real talent for doing that when nobody is around or everyone is distracted. I'm not around either. I'm unconscious.

I have then been given tests and told I am not having seizures (or the worse things: brain aneurysm, stroke, brain tumor etc.) about a bajillion times. This time was different because my wife saw it happen and was able to describe it. Apparently it looked really identifiable. I don't know. I was unconscious.

We still don't know what is causing me to do this. We have not confirmed the seizure. It's at least a good theory this is a seizure and I have been having them for a while.

Over the years I have been told over and over that various bizzare things are "probably a migrane" or "sometimes people just pass out" or "It's probably dissociation." My mental health is admittedly pretty rough.... I have chronic PTSD and a dissociative disorder. I also accumulated a lot of concussions and other vague things people get when life gets rough. A lot of things about my brain in particular have been seeming about a quarter borked for most of my life now.

This time when I fell on the floor somebody was able to describe what happened and my regular GP doctor is like "Oh! One of those!" Apparently the tests that have been done on me, in the past, don't detect seizures unless one is happening at the time of the test, which one was not. I was usually being tested a good while after whatever was over.

It's not usually practical to test someone during an emergency that happens randomly and lasts minutes, at most. Fair, but nobody told me that these would not actually measure one of the things people said they were supposed to be intentionally looking for. The doctor reading the results just said: "We don't see anything. You are good to go now." That does not fix the symptoms. I have totaled cars doing this stuff, luckilly not going fast. Still! It's not good!

Does this put me on the path to maybe not feeling like a medical mystery any more? I don't feel like counting my chickens yet. I don't really feel like running my wife's description by a GP really counts as a diagnosis. I'm supposed to talk to a neurologyst. I don't know if they are actually going to tell me anything that pertains to the other weird stuff that's going on, or do anything more than just try and decide if I need an anticonvulsant.

We didn't go to the ER on Christmas morning because hospitals are not at their best on hollidays. We didn't want to spend Christmas there anyway, and I was tired of being told I'm not on drugs (I don't need a doctor to tell me that!) and still don't have something that's going to intimately kill me, so: "It's fine. Right? Go home." Apparently the ER staff might have been able to figure some stuff out based on my wife having seen what happened, but we didn't know that at the time. Sooo... I'm probably in for more tests... Hopefully not the kind that don't catch the thing if it doesn't just happen to happen!

Hi, my name is RJironFalcon9. I'm here because my Indonesian wife whom came to the US on a K1 visa, and we married, was diagnosed with a brain aneurysm within 5 months of being stateside. Having suffered worsening headaches/paralysis/confusion/memory loss over time.

#MightyTogether

Hi, my name is cinnamomtrican782. I'm here because I am concerned about my daughter’s health 14 years after she suffered a brain aneurysm and now her daughter (lost her sister and gave birth to a child with autism - although she is very bright) being pre- diagnosed with lupus. God, forbid. They are currently faced with moving and need a home. More stress. My daughter is a newly born-again Believer in God, Jesus Christ, and the Holy Spirit. I have gotten great ideas from breeding this website regarding what to gift such a person. Thank you all. Be safe.

#MightyTogether

HI, my name is Quandary88. I'm here because I'm just trying to accept that I will always be sick and how to still live every day to it's fullest. Ten years ago, at age 29, my life changed completely, due to spinal cord injury, brain bleeds, seizures & then more illnesses along the way. It's taken this long for me to let go of what I could do/did and understand that my abilities, opportunities, and future will never be what I planned and hoped for. I'm interested in hearingother stories, struggles, achievements, etc. I'm not sure if I have much to offer to others right now, but I'd also like to help if I can. Thank you!

#MightyTogether #Depression #Migraine #PTSD #OCD #Grief #Epilepsy #BrainInjury #BrainAneurysm #ChronicPain #spinalinjury

Hello, this is my first posting and I hope that I can explain my situation and reach out to others with similar experiences.

In November 2018 I was suddenly stricken with the most excruciating pain on the lower right side of my abdomen. The pain began out of the blue and very suddenly. The pain was so extreme that all I could do was scream. I live alone and all I could do was to dial 911 and scream, hoping that my call could be traced. I literally could not speak and the pain was constant. My call was traced and the paramedics arrived. They tried to ask me necessary questions and all I could do was scream plus I have a severe hearing loss (wear hearing aids in both ears) and it was very hard to hear them.

I was rushed to ER and right from the beginning the nurses and staff were frustrated between my being unable to hear well and speak due to the severe pain. After standard tests they gave me morphine, but it did not lessen the pain. I have two grown children who do not live near me and they are diagnosed with high functioning autism. My other family members have all passed on. I was admitted to the hospital and tried to speak a few words between the constant pain. After they obtained my medical records there was a long list of illnesses too many to mention, but the one illness that was listed most recently was the diagnosis of having EDS hyper mobile, possibly sub vascular. The nurses were angry and callous and continued to tell me to stop crying and screaming. when being in a hospital is it not common for people to be in pain and show it???

I had no personal belongings and no one to go to my home to gather things. I had an iPhone but no charger with me and the charge was about half gone. I needed to contact my daughter and son and could not due to the pain. I gave the staff members the phone numbers for my son and daughter to contact them. My daughter was able to speak with a nurse and then text me what information she was able to gather. After hours of testing I learned that my liver had a large abscess, I had three gastric ulcers, a massive infection due to chronic UTI infection and sepsis, also severe headache (migraine with aura). There were two infectious disease doctors, and one urologist and gastroenterologist reviewing my case. I needed a PICC line put in to administer antibiotics but when the PICC line was put in it caused a blood clot in my left arm...very painful...all I remember is so much pain. I was strapped to the bed and not allowed to use the bathroom. They put a large napkin beneath me and the strong antibiotics caused my bowels to empty and they did not hook me up to a catheter. The continual exposure to the acidity against my skin from laying in my bodily discharge caused my skin to burn, blister and bleed. I was forced to lay far too long and they did not hook up a catheter either and the nurses were not happy with attending to me. One nurse balled me out and shouted that I should have asked for a bed pan. I told her I did ask for one...there was a button to push to ask for help and when I pushed the button for help no one would come...they were clearly understaffed. I did not know if I was going to live or die, the pain was excruciating. I had a tube put in my side that went into my liver to drain the abscess, I had a PiCC line in my right arm and my left arm was so badly swollen from the blood clot that I could not move it or use my fingers. I had no family there to oversee or bring me much needed items.

Since I could not hear the doctors when they came to see me there was no one to help interpret things...I lost my hearing when I was 27 years old over a period of several weeks. It was a permanent loss. I wore the best hearing aids one could wear to enable me to hear conversation and I had surgery in both ears. I did not learn sign language nor did my family. Doctors could not explain why my hearing was lost so suddenly. I did well reading lips and dealing with the hearing loss and did all that was possible to fit into the hearing world. So being in the hospital and alone and not hearing the doctors and staff was very difficult and the pain was more than I could bear. I cried often and at times had to call and yell for help asking someone to please help to change me and clean up because of the worsening rash. It was humiliating beyond words. One nurse while she was standing beside me called the doctor and she shouted in an angry tone (and I did hear her) saying that all I do is cry and moan and cry and moan. The doctor ordered pain medication every three hours (dilaudid). There were many tests and some took many hours to complete. There was no sleep. There was no Kleenex, no one to wipe my face, no bed changes. Many of the tests required fasting with no water or food and the tests were delayed so it was many hours without water. When I asked a nurse for a chip of ice she 'no'...

I did cry and moan but is that something wrong to do when being in sick and in the hospital? Had no one seen other patients in pain too and understood the depths and emotional aspects of being sick and alone? After spending eight days in the hospital I was transferred to a home and kept on a PICC line for 8 weeks and given antibiotics. The nurses at the home were callous and again would ball me out if I asked for help. I was approached by two people who wanted me to sign (right then and there) a document that would instantly place me in assisted living. I had a home and a life and bills and suddenly I am strapped to a bed and told to sign papers and be put away. I did not sign anything. It is sad how people can slip through the cracks, but even sadder how people who are so very sick can be mistreated and neglected. I have nightmares and flashbacks and PTSD. I told doctors and nurses about being diagnosed with EDS. No one ever paid attention, and I do understand that there are few people who have heard of EDS. I am in constant pain every day from the many comorbidities I have due to EDS. I had a brain aneurysm at age 38 and have been taking verapamil (a calcium channel blocker) for over 30 years. The neurologist I saw at that time diagnosed me with FMD (fibromuscular dysplasia)...when I was diagnosed with EDS hypermobile the doctor also diagnosed AS (ankolysing spondalitis) CFS (chronic fatigue syndrome) advanced osteoarthritis, kidney stones, chronic bladder and UTI infection, chronic pain and inflammation and joints that pop out of place, migraine with aura, IBS, hemorrhoids, TMJ, irregular heartbeat and palpitations...too many illnesses to juggle anymore, but I feel the lack of awareness about EDS can leave people in situations that are horrific.

I hope that some day the medical community will be aware of EDS and its many facets and there will be preliminary tests given when patients have multiple unexplained symptoms. I pray to keep writing and sharing the many illnesses involved with EDS and it's many forms. I pray that people will not fall through the cracks and be told to stop crying and moaning due to pain laying in a hospital bed.

Thank you for allowing me to share. #EDS

My 41 year old daughter died from a brain aneurysm 6 weeks ago. I found her body and I can't get the image out of my head. I start each morning by crying because I miss her so much and then I try to get on with my day. This is so stinking hard! I'm afraid the pain will never go away and I don't want to feel like this forever. I'm starting counseling next week. I sure hope it helps. I have a son with Down Syndrome (age 34) who is equally traumatized and I don't know how to help him.

I'm a single mom who is always busy with work constantly and rarely have time for myself. I try my best to make sure everyone else is doing good. Because i worry more than i would like to. When i my grown children do not check in with me i worry. In this day in age i don't know what could possibly happen to them. And now i have grandchildren who i also constantly worry about. Anyone who knows me knows that my family is very important to me. I now check in with everyone as much as i can because my family is spread out.

But there are days that i'm not good and at night sometime i cry myself to sleep because i'm going through something and really have no one to talk to and then i realize that God is always listening to me and than i start to think to myself that i could be talking to much to God and find myself thinking girl shut up because he has so much on his plate trying to watch over all his children with the world we live in today. About 6 years ago i suffered a brain aneurysm and almost died. Well i had to be air lifted to another part of the state i live in by myself with out my family and let's say that when some of my family was notified about my health situation they didn't check in to see if i was alright and that hurt because they could check in with me when they needed my help with what ever they were going through. But when i needed the love of my family they were not there for my boys who were young and who was about to lose their mother. My point is at that time i went through that and began recovery i wanted to die because i was tired of everything in my life and i really didn't care who i was leaving behind because i felt they wouldn't realize that i was gone anyway because while i was living no one checked in at all. Some would say that my life ended that day back in September 16th of 2016 I see it as my life started that day. God showed me everything that is important to me and showed me that I needed to make more time for him and not to worry about the things of this world because no matter what I think that i'm going through alone that he is always here for me through it all. I Love the Lord Thy God with all my heart because when I'm lonely that he has made it that way so I can spend more time with him and lean and depend on him.