I WISH THIS WAS A BAD DREAM, PPPD IS A PRISON.
If I'm being dramatic -so be it. PPPD is horrible, awful, debilitating, draining, and many more things. It has sucked all the hope and joy out of me.
I truly wish that this was a bad dream that I would wake up from and it would all be better.
Yes, I was formally diagnosed with PPPD around May 2025 by a neurologist.
But the symptoms all started on July 1, 2024. That is the day that my life changed forever - in the most horrifying way. This condition...I wouldn't wish it on my worst enemy.
Since then, I've been mourning my old life.
What happened that day? I woke up, and from the moment I opened my eyes, I immediately felt extremely dizzy. The room was spinning even before I rolled over to get up. The worst of it happened when I got up. My body felt like - hmmm... I still can't explain it. It felt like gravity was pushing down on me. I felt unbalanced. Dissociated. Derealized. Walking felt exhausting because of the sensation of feeling pushed down. Not like a heaviness from being tired. It feels more like a force that is weighing you down, and your brain is struggling to understand the position of your body parts.
Sadly... I still feel this way. And it makes me want to cry every single day.
What do I think caused this? I blame it on Levothyroxine/Synthroid medication (thyroid meds). A month before this episode, I was diagnosed with Hypothyroidism/Hashimoto's. The doctor started me on 50 mg of Levothyroxine.
Everything was going great. I honestly felt hopeful that I would be able to carry on with life with this autoimmune condition. I was even considering slowly stopping therapy because I was just so positive, hopeful, and looking forward to life. I was a go-getter. I worked very hard. I loved living life because I married the most wonderful person, and together we fostered a very stable, healthy home life.
Then July 1, 2024 happened.
The days leading up to that day were a bit strange. My muscles were cramping a lot, and I was having physical anxiety symptoms that didn't make sense to me because life was so good at the time. I thought, "It must be my iron levels."
But July 1, 2024 happened.
After that day, all the PPPD symptoms started, and I had terrible insomnia for weeks. I called my doctor immediately. He told me to stop my thyroid meds and referred me to an endo. By then, the damage was done.
I didn't understand what was happening to me, so I truly fueled the PPPD fire with anxiety. I gave in to every symptom. I thought something terrible was happening to me. So I freaked out - and insomnia made everything that much worse.
I didn't swing hyperthyroid, so it doesn't make sense why my body responded that way, but looking back now, I think that my body was just sensitive to the hormonal shifts as a result of the medicine.
My nervous system was shot for several months. My endo was no help and told me to go to a psychiatrist because this was "dramatic."
So, I believed her. I chalked it all up to anxiety. I went to a psychiatrist. They put me on 50 mg of Sertraline and gave me some sleep aids. You know what's crazy? The sleep aids didn't even help much, and they were high dosages. Nothing could put me down. Which was one of the signs that made me think this was all due to the medication and how my body was responding to the shifts in my levels.
I was couch-ridden for months. What helped me push forward? My youngest sister had a baby, and she needed help, so I pushed through for her. But it was very hard pretending I was okay. I was scared to hold the baby and take care of him. But somehow - not sure if it was a combo of the endo reducing my thyroid meds, being on Sertraline, or being distracted by the baby (I love kids, and before all this I wanted like 6 kids) - I was no longer couch-ridden.
I started Googling and reading Reddit threads to figure out what was wrong with me. Because I was in such a good place before all this, I thought for sure this would soon be behind me. I would give myself pep talks every day - still some hope left in me (then). By Christmas, I was feeling 60% better.
I wasn't bound to the couch. I started sleeping. I started laughing again. I found meaning to keep going - especially because I had a neurologist appointment on the horizon.
Yep, the neurologist appointment was very... not helpful?
By the time I saw her, my primary doctor had already done a CT scan, MRI, blood work, heart ultrasound, etc., to rule out any major health conditions. So when the neurologist saw me, she basically quickly routed me to ENT. Well, ENT saw me, and apparently everything was normal with the exception of some ear wax, and he told me I had vestibular neuritis (because when all this happened, I also came down with a cold).
I go back to the neurologist, she tells me I have PPPD and that there's no cure for it, I'm already on Sertraline, and there's nothing she can do for me. She did send me to vestibular therapy, but I only did 5-6 sessions, and they determined I was well enough.
This whole time, I'm not feeling July 1 level of PPPD, but every day was getting tougher and tougher mentally because I was starting to realize this was not a condition that many people deal with, and it was lonely. Especially because I can't describe how I am feeling to people - this condition just sounds so strange - and like it's just anxiety, but it's not just anxiety. I feel physical symptoms that limit my life.
Well, fast forward to the beginning of this year. I started feeling other health issues. Found out that my ferritin was at 3 and needed an iron infusion. Not surprised, I've always dealt with iron issues. I had hope that maybe this would boost my PPPD recovery. Unfortunately, at this time, my thyroid levels were also starting to become unstable... so my endo increased my thyroid meds from 25 mg to 50 mg around the beginning of April.
She kind of mocked me and said, "Your body might not respond well again, but suck it up"...
Yes, after that comment, I've made an appt to see another endo.
Well, the only good thing about increasing my dosage was that it proved my gut feeling that my body is very sensitive to thyroid medication.
I promise I wasn't even anticipating getting symptoms again. I just went about my life living with PPPD. Then the 3-4 week mark hit and boom, the PPPD symptoms flared up really bad. Insomnia, derealization, couch-ridden, etc.
I felt like I regressed back to July 1, 2024.
It's August 2026 now. A little over two years since my symptoms started. And I'm feeling hopeless. I don't recognize myself. I used to laugh a lot, exercise, I was very lively and so excited about life.
To now feeling crippled. I have been experiencing the worst brain fog. Derealization. Dissociating all the time. It's hard to sleep. The heavy feeling is horrible. I still feel it every day. I'm still on 50 mg Sertraline, and I'm not sure if it's done much - if anything at all.
I'm hopeless. Where do I go from here? I feel like I've advocated and tried to help myself so much. I've done the following:
Acupuncture
Chiropractor
Massages
Iron infusions
Psychiatry
Neurology
ENT
(probably more stuff)
Is this really what my life is going to be like for however long I live? I've never had depression before this, but I think I am depressed.
I have so much anger and hate for July 1, 2024.
Any hope or encouragement?