My name is John. I'm from Pennsylvania and my story begins around 2014. I first noticed when bending over my face would get extremely hot while upside down. I also started to notice I could no longer relax in a lazy boy. When I would try to lay back I would get a horrible pain on the back of my head. It would even escalate to a migraine if I feel asleep before tje pain started. Even pushing on the back of my head for longer than 30 seconds with my hand could produce pain. I simply "solved" this issue by not laying back anymore. If I wanted to relax I would lay down on my side on the couch. Or while sleeping I would lay in bed on my stomach or on my sides. At that point I never really slept on my back so it really didn't bother me. I mentioned both of these things to my doctor but he just blew it off as weird. I also blew it off and just worked around it. Flash forward a couple years is when my problems really started to exasperate me. I was sitting at my desk at work and someone asked me a question. I spun my neck around quickly to answer them. When I did this I got lightheaded and this waive or wall of fog entered the picture. To this day I have a incredibly hard time articulating what this feels like. It almost feels like I'm stoned (without the good feeling) It just feels like this wall of fog. I just don't know how else to describe it. Almost feels like I'm tripping. I have it 24 hours a day. It's constantly fluctuating between a 3 and a 9 on a 1-10 scale. This is the most annoying of all my symptoms because it never takes a break. It is relentless!!! My other main issues are being lightheaded and massive face heat (like I use to get when I bent over but now with no notice or movement). My face/skin also itches. It honestly feels like a allergic reaction. Nothing makes these symptoms worse than being on a computer, phone or watching TV up close. Once I'm about 10 feet away it doesn't seem to bother me. Sleeping on my right side also seems to agitate it. Recently I can't sleep on my left side either. I had to buy a $4,000 temperpedic bed so I now sleep in a recliner state on my back. I pretty much sleep sitting up. Strangley enough ever since these main issues started I noticed all of the sudden I could now sleep on my back again with pressure against my head. Coincidence? Though my neck still hurt it wasn't a migraine or a horrible pain and seemed to be the lesser of 2 evils. I know you would think it would be the other way around but it wasn't. I couldn't explain it but was just thankful to still have a option of sleeping. Ha. I saw multiple physical therapists. They tried to give me the Epley maneuver 50 times. Nothing seemed to work but I did notice over the next 2 years it SLOWLY got better. So I played the long game.. I noticed the first 8 hours of the day I still couldn't get on my phone but the second part of the day after my eyes kind of "warmed up" I could get away with it. This continued to get better over time and I recovered to about 85% I could live with that. I would still get lightheaded everyday and have small flare ups but I could always get it to go back to my baseline. I finally felt like I was getting my life back. Health is everything isn't it. I look around at people who have no clue how lucky they are to have there health. I also recognize that things could be so much worse for me. This past October I was installing new landscaping for my mother. I guess from being down on all fours and bending over for a extended period of time I agitated it all over again. This time worse than before. This time it just seems to be getting worse with time or progressing. This time I cannot play the long game. I need answers and a resolution asap! I need a diagnosis!! Is it Vertigo? Is it my ears? Is it my neck? I spoke with my new ENT and he really thinks since I do NOT have balance problems or I do not have the kind of dizziness where it feels like the room is spinning like when you drink to much that I do not have Vertigo. He thought like me that it was my neck. So I started physical therapy for my neck. This is where things went from bad to nightmare... one exercise had me doing neck movements from side to side at 180 bpm. My neck did not like this. The next day and pretty much every moment since I have a humming in my right ear and have suffered some hearing loss. I pray this is temporary. Especially the humming noise. The humming is worst at night when its quite. I also noticed I can induce the sound with head movment from side to side. Its also in both ears alot of the time but it seems like its more in my right ear.. i had a hearing test weeks ago and he said i had phenomenal hearing. Now weeks later my hearing is shit because of the noise they are making. Any help is greatly appreciated. As it seems no one knows anything about what I am going through. DOCTORS look at me like I'm crazy.. I'm so happy to have found a place to turn like on this forum. A place where I know others like me might have answers. Someone else has got to be going through similar experiences. I know I've been rambling on. If you are still reading this THANK YOU for listening. I don't know how much longer I can go on like this. Its maddening. I just try to remind myself that someone out there has it alot worse. And if they can do it I can do it. One more thing, please excuse my punctuation or the parts that may not make sense. I had to type this out on my phone which is quite the chore for me lately so I try to hurry through it.
To recap my symptoms are..
Lightheaded (not to be confused with dizziness or vertigo)
Brain fog ( a constant wall of fog fluctuating)
Face heat- i cool this down with a fan around my neck. It feels amazing. However when I pull the fan away it gets hotter than it would have if I wouldn't have used the fan. Just like a burn. Put it under cold water and it feels great. Take it away from the water and its worse. )
Okay that's it. I'm sorry. Please help!!!
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You've come to the right place! Welcome 🙂
I know you've seen many physical therapists, but have you considered seeing a chiropractor who focuses on the cervical spine? Since you have that neck pain, it might be from a lack of curve in your c-1 spine, which can cause your other symptoms.
Also, there is a type of dizziness (without the feeling like the room is spinning) called PPPD (Persistent postural-perceptual dizziness). You can find articles about in on Veda. It's more the feeling of being unstable, like maybe you're swaying.
This might be vestibular migraine, which can be caused by so many things. The spine, PPPD, etc., can impact the vestibular system in so many ways. Brain fog is a big symptom.
Definitely check out the resources on this site, and look into vestibular migraine, PPPD and the cervical spine!!!
Hope this helps!
What a frustrating experience. I'm so sorry you've struggled to find answers. It does sound like the issue could be neck-related. Have you had an MRI or xrays of the neck? Some physical therapists will do trigger point muscle release and neck manipulations. I hope you find some relief soon. Sonia's idea about a chiropractor is one worth exploring. Just make sure whoever you go to specializes in cervical/neck alignments and vestibular concerns.
These disorders are so tricky to pinpoint. Keep looking. You'll find the right treatment!
John, there is probably more than one source of your symptoms. sometimes there are communication barriers with Physicians. Your ENT may have only been referring to one specific question, i.e BPPV, but not other causes. I think a Neurologist who treats this can be most helpful. Make sure that is his/her interest. They don't all focus on vestibular conditions.
In addition to what the others have said here....
Did you ever get that hearing loss checked out? Do you still have it? If the answer to the 2nd question is yes, please go back to your ENT as soon as possible.