I’ve been lurking on these forums for a few days now, and finally decided to post and say hello and share my story. Everyone seems so supportive and helpful here, and it’s definitely something that is needed when going through all the issues we go through.
A little backstory:
I’m a 25 year old female who has always very active and ambitious. On January 21, 2016, I was running some errands with my mom, and while sitting down, I suddenly felt a very intense sense of motion. My head felt like a fishbowl and it seemed like my surroundings were sort of like vibrating. I started getting an anxiety attack as I thought I might be having a stroke or something! I went to an urgent care and they told me it was anxiety and I needed to eat something. I went home and ate and went to bed and a few hours later it was gone and I went on with life. The next day, I was in a movie theater and it hit me again! I went to another urgent care and they said it was probably a sinus infection. They sent me home with antibiotics which did nothing. I just kept getting worse. At this point it was 24/7 vertigo and I’m trying to think, what the heck did I do? What’s going on? And then I remembered that prior to this event, a few weeks before, I was having major issues with my neck and upper back. That is really where all my medical issues started to really happen.
Four weeks before my vertigo hit me, I woke up one morning with a horrible neck ache. It was so bad that I couldn’t even turn my head to the left which was very unusual. I went to a chiropractor, and within a few adjustments I was able to rotate my neck again, but then my upper back was killing me. This slowly started traveling down my arm which became very achy and tingly. I started getting scared, but the doctors said it was just a pinch nerve. I just started taking pain meds everyday to function and forget about the pain. The morning before my vertigo hit, I woke up with a horrible headache in the back of my head (which is rare; I usually get them near my sinuses), and my neck was hurting again. When I was sitting down, my neck was extended downward looking at my cell phone, and that is when this all started.
I also remember a year ago when I was at work, my head (again) was extended downward looking at a binder, and I felt a full 30 second episode of spinning vertigo. It was to the point where the whole room was spinning and my eyes could not see straight. Thankfully, it only lasted 30 seconds and never returned. I went to the doctor to just make sure everything was ok, and nobody was concerned Because of these events, I initially thought that this all has to be related to my neck.
Since January 21st of this year, I have since been to 3 GP’s. My anxiety was through the roof the first 3 weeks of this. I was in bed most of the time and could hardly function. The first two GP’s said I had BPPV and to go home and wait it out. After researching BPPV, I knew that was not what I had. BPPV is characterized as having spinning vertigo (did not have), episodes only (mine was constant), nystagmus (did not have), and the testing could usually indicate which ear is the problem (nobody ever tested me). I tried explaining this to the doctor the second time and he said I had a “mild” case, and that is why I was not spinning. I then asked why I was not referred to physical therapy, and he didn’t have an answer for me and gave me a referral so I could get the epley maneuver done and not just sit at home in misery. Once my physical therapists told me they did not think I had BPPV, I went to see another doctor who decided to give me an MRI and blood tests. Everything was fine. After my MRI, I was referred to a neurologist but I had to wait 3 weeks for the appointment (which is pretty good I think!). During the 3 weeks, I was searching for answers online every single day. I heard about NUCCA which I was reluctant to try, but after learning that they don’t crack, and my insurance covered it, I decided to do it.
I have been going to NUCCA now for about 4 weeks, and I actually have seen some improvement. First, I used to have TMJ to the point where every time I opened my mouth, my jaw would pop. I haven’t had my jaw pop for 4 weeks. My neck/back/arm pain is all completely gone. As for the vertigo, since seeing the NUCCA, it has gone from an 8 (10 being the worst it can be), to a 4-5 depending on the day. My anxiety is also almost completely gone. I am so fortunate that I only pay $5 per visit, and the office is only 3 minutes away from my home. So thankful for that as I know many people travel and spend a lot of money for these appointments. I am hoping within 4 more weeks I will seen even more improvement.
However, I had my appointment with my neurologist two days ago, and he did see that my C1 was shifted out of place, and told me to continue with NUCCA as long as my neck is not being cracked (which I will never do again), and also told me that my MRI scans showed some random spots of density which were signs of past migraines. I never thought about migraines, and then I remembered that last year between August-October (which was very stressful for me) I was having constant headaches like 2-3 times a week and I thought they were tension/sinus related. My neurologist said those were all migraines. I haven’t had a really bad headache since October, up until the morning that my vertigo started. he said it is possible that the migraines and vertigo could be caused by the shift in my neck, yet he also though it could be Vestibular Migraines which was so strange to me since I haven’t been having any migraines during all of this vertigo. He also did tell me to to clean up my diet, get my sleeping pattern more normal (which I DO need to work on), take vitamins, exercise, etc and that within a couple of weeks if I am still having problems, we would start with some medications. The first one he mentioned to me was Amitriptyline. So, for now it’s nice to know that I have a plan B if the natural route doesn’t work for me.
I’m wondering if this sounds like VM? My main symptoms are constant vertigo but no spinning (feels like i’m on a whobbly boat or watching cloverfield non-stop ), a bit of light sensitivity, anxiety (not so much anymore), and brain fog (also not so much anymore, but a lot before.) I also once in a while feel that pressure but lately when I feel it is usually just goes away.
In closing, whatever this is, it has really turned my life completely upside down. I’ve moved back in with my mom, I’ve lost my new job (that I was never able to start because of the vertigo), and don’t do a lot most days. I have been able to start driving again about 3 weeks ago which is awesome and find that it’s harder to notice the vertigo while in the car. Many of my friends don’t understand what I am going through, and that has been really difficult. I feel like everyone thinks I am being dramatic with the exception of my mom and two good friends who know I would never make this up.
Anyways, that’s it. Thank you for reading, and I hope to get to know everyone soon!