First Name

Last Name

Albert Lea


Country of Residence
United States of America

Posts (436)

Fri, Jun 7 8:34pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi @vpauley here is a resource for you. Hope this helps! https://www.malsfoundation.org

Wed, May 1 6:24pm · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

I have had two vascular surgeries the last one was about 3 years ago and each I one spent unexpected time in the ICU before going to a unit. Although my surgeries were successful, the recoveries were exceptionally long. I find it very interesting that during your coma you were played audiobooks, and you hear them to this day. Have you ever done any research on auditory hallucinations? My sleep is a weekly battle, however, I do find I have fewer insomnia days now that my husband is out of the house than I did when he was here. When I married my husband (second marriage) I moved my two boys here to a small town so that he would not have to relocate for work. I was excited to raise my boys in a small town. After a year and a half of marriage, I was diagnosed with vascular disease. My diagnosis definitely changed me, but it made me a stronger person. Now that my symptoms are managed and I am doing better we just seem to be at different places. I will say I have not been as supportive of him during times when he was ill. I would get so angry when he complained about a symptom that ended up to be nothing. Maybe due to the fact that I did not feel supported as I should have been. I did talk about this with therapists. I just find myself empty when it comes to supporting him. I have nothing left to give. Not sure if this is making any sense what so ever! LOL, I admire that you are investing in yourself with strength training/exercise.

Wed, May 1 11:22am · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

That is what happened to me when I got home from this major surgery….my husband took time off work to help me, but he retreated down to his office until bed time, occasionally asking me if I needed something. I sat in a chair alone trying to heal, and would just sit and cry. I felt so helpless. I know they need time too..
But this was different this was being abandoned in my own home. I thought maybe I was being too needy, but when I look back it was not me being needy. I started to write down my fears during that time, to process what I was going through. When I read back my words years later it breaks my heart. Thank you @jslate for sharing about your auditory hallucinations….sounding like an echo…What your neurologist said makes complete sense to me. Also when you said words don’t match actions…YES!!!! I am sorry you had to live through so much trauma. Please know that your experience has helped me greatly to feel less alone.

Tue, Apr 30 10:26pm · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

@deltakay I am so appreciative that your shared your experience as I can relate to your struggles with your relationship, and not being the women he married. I did not want visitors at the time either I did not want my boys or my dad to see me in pain, but I wanted my husband there during the time I was having chest pain, thankfully my close friend came, it was the biggest blessing. I have seen a therapist, several in the past…sometimes it just gets tiring complaining about illness. I also have trouble sleeping, but with the opioid crisis physicians are Leary about sleeping meds and anxiety meds too so they have been taken away, or cut in half. I practice very good sleep hygiene but even with that it can be difficult to sleep. I was blessed with pulsatile tinnitus along with regular tinnitus…the ringing and swooshing never stop. Sleeping is difficult. Hang in there, it is so good to talk about this openly.

Tue, Apr 30 10:17pm · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

Certain songs trigger the memories but not the auditory hallucination. The auditory hallucination has happened at home when it is completely quite, it is so real I could swear my sons were playing music up in their room, but each time they never have been. I do associate it with stress, however cannot pinpoint what stress.

Tue, Apr 30 8:51pm · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

I was hospitalized several years ago and was in the ICU for approximately 3 days after vascular surgery. Those days were a bit of a blur, and my overall stay at St. Mary’s was 5-6 nights. When I was in the ICU I was having chest pain and ended up on a nitro drip. I remember doctors and nurses talking very softly and I could not hear what they were saying… but I wanted to badly. I was so frightened and I could not seem to communicate my fears. I was constantly fighting the pain medication as I was scared to fall asleep. Again, I just remember feeling like no one was understanding what I was going through. At the time I was having auditory hallucinations…which added to my fear. It was like I could hear a constant loud rock concert and it was not enjoyable. To this day when I am extremely stressed, this sound comes back to haunt me. It does not happen often but when it does the fear is horrible. Would like to hear what others do to cope with nightmares or hallucinations. What have others experienced? I have never shared this, but I felt abandoned by my husband during that stay, he was not supportive- thankfully my best friend sat by the side of my bed til 1 or 2 am in the morning, holding my hand just so I would close my eyes. I became very bitter in my marriage and our relationship and am also wondering if this has happened to anyone? (We are currently separated as of recently… first time I am saying this out loud) Now that I am separated I have the same anxiety as I did in the hospital. Thank you in advance for sharing.

Tue, Apr 30 4:45pm · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi everyone, back in class again! Wanted to let everyone know there is now a formal non-profit dedicated to MALS! Full disclaimer, I am on the Board of Directors. Anyways, if you are interested, take a peek: https://www.malsfoundation.org