u/coolsak850

This is a long post but I wanted to share my story. I’m at my wits end. Beyond. I’ve been dealing with dizziness and more for over a year with little improvement.

Fall 2024- I started having dizzy spells at work. They wouldn’t last that long but they were very scary. I wasn’t lightheaded I just felt very dizzy. I’ve dealt with anxiety and panic attacks my whole life so I assumed it was that. The feelings got worse, I started having bad brain fog, head pressure, etc but I was functioning. I tried getting back on Zoloft and other psych meds but it felt like my body was rejecting it which was really weird. I was also on birth control and that completely wrecked me.

January 2025- I got sick. My tonsils were really swollen so I went to urgent care and they prescribed antibiotics + steroids. Around day 4 I started having bad side effects and the doctor told me to stop. Welp. That was the start of where I am now… i felt very off balance and gross after going back to urgent care. She told me it’ll go away in a couple days but it only got worse. I couldn’t even leave my bed for 3 days because walking was so hard. I went to my primary and she said I had a lot of fluid in my ear. I did all the things to help myself and eventually things got better for 3 weeks.

I was honestly kind of traumatized by the experience because I didn’t even know it was possible to feel like that but was improving. Then one day I was playing Minecraft on my laptop and felt like I was going to pass out.. after that the off balance feelings etc came back hardcore.

I pretty much felt this way until April. Like 10/10 miserable. I was also getting sick back to back which made it worse. I was still driving but stopped in March because it felt dangerous. I was getting really dizzy, my arm would tingle, felt out of my body, etc. I also had to stop working because it was unbearable. The only thing that made it a little better was changing my diet.

My anxiety got really bad because nobody could figure out what was wrong and I just kept feeling worse. I’m now diagnosed with MCAS and that was flaring realllly bad.

April 2025- I finally saw a neurologist. They did an mri and my neck is mess but nothing major. I kept bringing up the vestibular stuff but he wanted to diagnose me with dysautonomia and said I had vestibular neuritis. I saw a neurosurgeon for a second opinion and they put me in PT.

June-August 2025- I started PT and he told me about cervicogenic dizziness and vestibular system. I did vestibular testing and he told me I have vestibular hypofunction.

Septemeber 2025- back to the MCAS thing! I finally got diagnosed and started meds.

December 2025- I started dry needling and it helped a lot! I still didn’t feel good but it gave me some relief. She started telling me she thinks I’m hypermobile and wants me to work on building muscle with this other PT.

January - now..

I still feel awful somethings help but not fully. I haven’t good in over a year. I am dizzy everyday but some days I’m less dizzy. My anxiety has become so bad. I’ve tried so many psych meds for my anxiety and I can’t get thru the side effects. I’ve been medicated most of my life it feels like so I know what’s normal and what’s not. I do have klonopin and I know people don’t like it but it has been the only thing that has given me some of my life back. I don’t take it everyday.

I started the new PT so we will see how it goes. My everyday symptoms are:

- brain fog. Like horrible brain fog with no breaks
- symptoms worse when I wake up but get better after food
- feeling like I’m in a a video game
- head movements can make it worse
- everything feels overstimulating. Even conversations are hard.
- off balance
- crowded places make it worse
- anxiety/depression
- headaches, tight muscles
- ear ringing

When things flare up bad that’s when I get the sinking floor feeling/feel like I’m on a bad acid trip.

I don’t know if I have PPPD because I have been diagnosed with other things. Nothing has really helped me and I’m really sad. I try to stay positive but it’s hard. I feel so gross and scared every single day. I know anxiety makes it worse but it feels impossible to not be anxious. I just started taking progestin because my hormones are a huge trigger. It’s been rough but I’m hoping I adjust.

Idk what my goal is with this post but i also don’t know what to do anymore. I feel like I will be stuck like this forever :(

Hi.. so I started the Heather mini pill 8 days ago and suddenly I feel like crap. I am so foggy and fatigued I can barely do anything. I was experiencing really bad nausea and I was lightheaded but it chilled out a little. Idk I just feel gross in my body. I have mast cell activation syndrome and my luteal phase is the best phase of my cycle, I feel like everything really calms down but now I feel sad, irritable, and like a freaking zombie. I have noticed more heart palps and that also happened when I was using progesterone cream. It’s still early so these effects could go away, but if they don’t I’ll just have to message my doctor.

Can anyone relate or give me a little hope? My hormones rule my life + my periods are brutal so my allergist told me to try the mini pill. Estrogen is NOT my friend.

Hi.. so I started the Heather mini pill 8 days ago and suddenly I feel like crap. I am so foggy and fatigued I can barely do anything. I was experiencing really bad nausea and I was lightheaded but it chilled out a little. Idk I just feel gross in my body. My luteal phase is the best phase of my cycle, I feel like everything really calms down but now I feel sad, irritable, and like a freaking zombie. No flushing or anything which is good… I have noticed more heart palps and that also happened when I was using progesterone cream. It’s still early so these effects could go away but if they don’t I’ll just have to message my doctor.

Can anyone relate or give me a little hope? My allergist suggested birth control because my hormones rule my life + my periods are brutal. Estrogen is NOT my friend.

I have horrible health anxiety WITH health issues. I have been able to overcome a lot of stuff like the heart anxiety but I can’t get past the fear of passing out. I have never passed out in my life. I have come really close after an injury and when I got my lips done once lol but never fully passed out. I live alone so it makes it even worse. When I have panic attacks ofc I’m dizzy … ik panic and passing out don’t mix but I can’t fight the thoughts. However my physical therapist told me he had a client that panicked so hard she passed out and I literally got so mad at him lol.

Why this is also so hard is because I’m always dizzy!! I have neck issues that cause dizziness and even after a year of going thru this I’m still not able to differentiate between the two. The anxiety and dizzy stuff has truly ruined my life. I have become agoraphobic which is hard to admit. I am in therapy and I do exposures.

Also I’m not shaming anyone with agoraphobia bc I obviously have it. I know how fucking hard it is. I wouldn’t wish this on anyone. I just can’t believe I’ve gotten to this point. Im very hard on myself which also doesn’t help lol.

Any advice :(

Hello!! Looking for positive experiences. I know everyone is different but my cycles drive me insane and are my biggest trigger at this point. I basically have panic attacks, horrible brain fog, and flushing til luteal, then a couple days before my period I become scary depressed and everything else returns. My periods are also very heavy and very painful. My allergist recommended I try progesterone only birth control and I just got it. I’ve tried progesterone cream for my luteal phase and it helped sooooo much but whenever I stopped my body went haywire. Lasted a couple months then stopped.

The combo pill completely wrecked me ofc but I feel like this could be a game changer?

Hi! 27F. So.. I’ve been going through a lot. I’ve tried a bunch of things to feel better but nothing has really changed that much. I’ve always had weird symptoms but nothing that interfered with my life. In 2024 I noticed a shift, and then in 2025 my life was basically ripped away from me. In 2024 I started having dizzy moments at work, head pressure, and back pain.

I got sick in January, took steroids + antibiotics, had to get off because I was having really bad side effects and now my life sucks :,). I started having neck pain, pressure in my head, tingling down my arm, really bad brain fog, horrible vestibular issues, etc. there was always a sore spot at the base of my skull. I couldn’t turn my head, bend down, look up or down, and driving was impossible. I also had rib pain?? When I started eating anti inflammatory foods it went away. I’ve struggled with that for years.

I saw a neurologist and they did an MRI. My neck is a mess but nothing major. I started PT + vestibular rehab and have been doing it for 6 months..

In September I found out I have MCAS!! I started dry needling in November 2025 and the PT that does it thinks I’m hyper mobile. I brushed it off but the last time I saw her she told me she thinks hyper mobility is my big issue and referred me to a new PT.

Things have improved but my life freaking sucks. I am dizzy every single day, head movements still make me dizzy sometimes, the brain fog is awful and 24/7, and I am so.. so anxious. Dry needling helps the dizziness a little bit my muscles are still so tight and I have a bunch of trigger points.

I don’t have joint pain. Sometimes things sound creaky but idk if that’s normal or not lol. The only pain I get is lower back pain & sciatica sometimes. I can also tilt my head back really far lol. Just trying to add as much info as I can.

I’m going to start seeing that new PT and feel excited I guess. She works with a lot of people that have mcas/pots/hypermobility. I just want a clear freaking answer. It’s been a year of “oh it could be this” and not getting better.

I’ve done so many tests and I’m praying that I’m finally on the right path:(((.

Can hypermobility cause cervicogenic dizziness? Can it slow down recovery? Does anyone relate to this?!! I just don’t understand://