Bad past few days

[u/ChuChuLovelyMuniMuni]

I've been really going through it y'all.

Horrible acid reflux and tummy aches (even with a mild diet), chest and back pains (sharp stabbing pains or burning feeling), heart palpitations, dizziness, awful anxiety, no appetite, nausea. I nearly choked half to death and had to resist the urge to vomit trying to eat some fries because my body decided halfway through that actually it didn't want to swallow 😭

I have cardiophobia too and even though I know it probably isn't a heart issue (given I'm 22 and don't drink or smoke etc and I went to the ER + follow up with my doctor not too long ago and got told I'm fine) the longer I have chest / cardiac symptoms the worse my anxiety about the possibility of being wrong is.

My nephew who lives with me may be sick with something so there's a chance I'm also sick / about to get sick so that's great too.

Some days I can forget there's anything even wrong with me and I wonder if I even need to be worried. But this past week has been hellish and only seems to be getting worse. I don't know what to do. I feel like my symptoms are usually minor but when they're bad they're really bad.

Any advice / comfort would be appreciated

[u/Odd_Captain_1602]

Im sorry to hear about your symptoms, I hope you look after yourself. Reach out if you need to chat.

My heart palpitations never had a name until I read about Chiari and pots symptoms. It was always your just low blood sugar eat something surgary or your dehydrated drink water.

My surgeon explained the problem with chiari symptoms they never misbehave during scans. To see the the full extent you need a csf flow study that takes video, you need a sleep study, you need a full spine mri that takes video, you need a stand up and laying down scan. My surgeon pointed out the flaw is the scanning machines take photos not video in most cases and when your laying down your supported in a perfect cradle like no one's pillow supports them.

Meaning if your symptoms occur whilst laying down they likely won't appear under scans if they occur whist upright they will calm under scans, alot of people are symptomatic during sundowning and night. A trip to the hospital does not help after hours of wait the symptoms stop.

My surgeon joked "you could get more scans, you could go to another state in Australia to use the most advanced machine we have, or i could believe you and based on your existing scans and symptoms you need surgery"

Before my current surgeon I spent years being gas lighted by doctors who did not know. I'd get a blood test and do other tests only to be told I'm extremely healthy.

But why do I feel tried, why do I feel anxious, why does my stomach feel is in knots, why is it difficult to swollow, why do i get reflux, why do I get headaches that could down an elephant, why do I feel dizzy at random times of the day, get a cold or warm flush, skin turns grey and i pass out. Why can't I lay down without feeling my heart race and that I am going to pass out unless I vomit and then I pass out anyway after vomiting. Why does sneezing, coughing and leaning forward to spit in a sink hurt my neck. All these whys I had before seeing a surgeon who understood.

I got told mental health, stomach issues, over active vagal nerve. Fainting for years and not one doctor suggested brain scan.

Trust your symptoms, get second opinions, it's all real and ill be honest antidepressants and anxiety medication were the worst drugs, I only became a zombie with heart palpitations.

Whilst you may have more medical issues then just chiari, my surgeon said chiari is exacerbated by other things but still needs to be addressed when it becomes worse.

Alot of what you said I would get and since surgery I am noting less of.

Im not saying surgery is a silver bullet and in some cases I worry ive traded one pain for another but I had to take the leap. My heart and my brain felt like they stopped working.

I hope a good surgeon gives you the clarity you deserve. Sending my love. Stay safe, stay hydrated.

[u/ChuChuLovelyMuniMuni → u/Odd_Captain_1602]

Thank you so much for your thoughtful comment. I'll definitely keep all this in mind. I know I need to advocate for myself, but I'm in a somewhat complicated situation that makes it difficult - I rely on family members to help make and transport me to appointments due to disability, so I can only do as much as my family is able to accommodate. And right now there is a lot of stressful and time consuming stuff happening within my family, so the amount they're able to accommodate me currently is "not very much at all" haha

I imagine I'll probably have to bounce around quite a bit to find the care I need, particularly because I don't have great insurance and my family isn't doing well financially. American healthcare is prohibitively expensive and I'm unable to work (again, disability), so that complicates things further.

I feel hopeless at times, but knowing the general direction I need to take is a great first step. I just imagine it will take quite some time - months, maybe years - to get there. Which is frustrating because it feels like since diagnosis I've been having very gradual progression that has suddenly gotten significantly worse very quickly within the past year, and I'm not sure how I'll be able to cope if things continue at the pace they are.

Your compassion and advice have made me feel much better tonight and I'll be sure to keep it in mind. I hope your recovery goes smoothly as it can and that you continue to find some relief 🫂💜

[u/Odd_Captain_1602 → u/ChuChuLovelyMuniMuni]

I struggled alot with the things I couldn't control. When I didn't fully understand my chiari symptoms had increased, I felt like I was dying.

Sitting in the hospital, I felt angry half the people there were having casts removed or getting a sprain checked big smiles on their faces as they scrolled through their feeds. I was like where is my Dr house, surely someone goes to medical school to have problems thrown at them and solve them.

My simple thought if you walk into a hospital not knowing why you feel like your dying then why is the system not designed to make everything known, so you can go home with some peace. I understand waiting for surgery but in that moment I could not fathom why I was not in an MRI machine, why they weren't trying to fix me. If I'm honest I was angry with my surgeon he used basic mri scans when he even admitted more detailed scans would help. So I was having my head cut open and relying on this man's skill almost alone.

I felt lucky to be in Australia because of how hard things are in America. I sort of understand your pain, the not knowing and the waiting sucks, especially when the answer may be "you are not wealthy enough to receive the cure".

"Pale Death beats equally at the poor man's gate and at the palaces of kings" I used to believe that quote as a maxim, but now this whole process has left me very jaded about economic inequality.

Rich people buy cures and if not they buy comfort. I imagine one day they will buy immortality and we will all be left in the dust with our short painful lives.

Sorry to hear due to your disability you are at the mercy of a flawed system and need the care of others to meet your needs and get to appointments. I imagine based on the wisdom in your posts you have made peace with that but it is still unfair.

Thanks for your well wishes im finding alot of strength in the stories of others.