23 with near constant dizziness and lightheadedness.

Posted by phillipc421 @phillipc421, Thu, Feb 28 4:30pm

Hey all,

Let me begin by saying I live a healthy lifestyle (eat mostly good, exercise vigorously 5-6 times a week, etc.) Almost exactly two years ago I started getting random dizzy spells and episodes of lightheadedness. During these episodes I feel as if the floor is not stable and that I may pass out. It gets extreme and debilitates me. I have never passed out. Outside of the episodes, I have near constant disequilibrium. I describe it as dizziness but it feels as if the floor is not stable or that I may fall through it. I feel weightless in my limbs and have head pressure that goes along with this. Not all these symptoms occur together but they all occur. It is effectively ruining my life and mental health. I can no longer enjoy activities I used to once enjoy. Leaving the house is a chore, working out is a chore and leaves me feeling drained, work is hard to be focused, etc. Physical activity greatly exaggerates the condition and sometimes I cannot complete workouts.

I have seen two primary care physicians, three ENT’s, two neurologists and a neurosurgeon, two cardiologists, and an allergist. They ran multiple tests and cannot give me a reason for the way I am feeling. They found a pineal gland cyst on a brain MRI but say it has no significance. Wore an event monitor for 2 weeks and there were some PVC’s but the cardiologist assured me they were normal. Full vestibular workup done as well. Many have tried to tell me that it is all anxiety but I do not believe that is the case as these episodes arise and even the constant disequilibrium arises with no apparent trigger or when I am jut home doing nothing. I have had anxiety issues in the past but not to a degree that caused physical symptoms. I’m also suspect of this diagnoses as the sensations came out of nowhere and I was perfectly fine prior to them starting while living a much less healthy lifestyle. Also anxiety medication does not alleviate the symptoms only seems to make me not care as much. I still feel drained and weak however. I believe that my condition is causing some anxiety which is in turn making things worse, but I do not believe it is the root cause. I am able to breathe through episodes of anxiety. I have seen therapists and psychiatrists. They don’t have answers for me.

I have seen some alternative providers as I am now getting desperate. A chiropractor was helpful but did not relive symptoms, although she was the only provider I’ve seen who put a lot of effort into my case. I’ve recently seen a dentist to evaluate if anything went wrong with a wisdom teeth surgery I had a few months before my symptoms started. I only thought of this after coming across some information about “cavitations” on the internet. However there is no concrete evidence these are actually a medical issue. Upon focusing on the extraction sites, using a cone beam ct, I did show what appear to be “cavitations”. I am torn now because the dentist is saying yes it is unusual (he said it looked as if I has just had my wisdom teeth removed despite the surgery being over 2 years prior), but he does not think it would cause symptoms. Information online paints a different story. They report cavitations could definitely cause the issues I’ve been having. I just find it a strange coincidence that I do indeed have pockets in the bone where my teeth were removed and that my symptoms began not too long after my surgery. Because this is not recognized in standard dentistry, I am getting blank stares from both dentists and oral surgeons. I am debating on just asking them to cut into it to see, they are reluctant to do this. It is the only lead I have right now but I don’t know who to trust.

I feel I am too young to be feeling like this with no explanation. My vitals are fine and most doctors seem to not take me too seriously unfortunately. I do see it from their point of view but I believe that I am just one of those cases that may take more time. I did request an appointment at Mayo as a last resort but was denied.

If anyone has any insight please let me know. All comments are welcome. Thank you for taking the time to read.
Phillip

If any of the moderators know of a better group that this would be more well-suited in, please feel free to move. I didn't know which group would fit the symptoms best.

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@phillipc421 Welcome to connect we all try to help each other. I have just been going through the same symptoms but my ear Dr sent me for testing the results showed nothing but he recommended I do ear exercises have you done these?

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@lioness

@phillipc421 Welcome to connect we all try to help each other. I have just been going through the same symptoms but my ear Dr sent me for testing the results showed nothing but he recommended I do ear exercises have you done these?

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What types of exercises? I had them look at my ears pretty thoroughly. They assured me the cause was not my ears but I did vestibular rehab therapy anyways.

Liked by lioness

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@phillipc421

What types of exercises? I had them look at my ears pretty thoroughly. They assured me the cause was not my ears but I did vestibular rehab therapy anyways.

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@phillipc421 That's what he suggested sit on bed count to 30, Kay on the side that's bothering you more turn head up to celling CT 30 ,sit up30 lay on other side CT 30 he said the crystals in ear become more balanced then so this is all from that vestibular test I had .So did the rehab did you find it helped you?

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Phillip, For what it is worth, because your symptoms started 2 months after your wisdom teeth procedure, I would go with your gut, and pursue your teeth at this point. I would get an oral surgeon to go in there, and see what is going on, and if something can be done. I am wondering if you could have had a autoimmune response to your surgery. God, what you have gone through. I assume you are a young person, and if nothing else but this surgery has been done to you, pursue it further. What has been going on with you seriously caused the hairs on my arms to stand up. It is horrific. Pursue this dentistry. God knows if an oral surgeon will even touch you. Oy, too much. Good luck to you….you are way too young for this…..Lori Renee

Liked by phillipc421

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Hi @phillipc421, as per your suggestion, I have moved your discussion to appear in the ENT group as well as the Brain & Nervous System group, where you'll meet other members talking about similar issues with dizziness and lightheadedness. In addition to Lioness and Lorirenee, I'd like to invite @doc3rob @nicoles @the138 and @jadillow to this discussion.

You may also be interested in these discussions:
– Chronic Subjective Dizziness-CSD https://connect.mayoclinic.org/discussion/chronic-subjective-dizziness-csd/
– Chronic dizziness and vestibular migraines https://connect.mayoclinic.org/discussion/hello-_-my-name-is-kim-i-am-33-years-old-and/
– Pineal Cyst https://connect.mayoclinic.org/discussion/pineal-cyst/
– Lightheadedness https://connect.mayoclinic.org/discussion/lightheadedness/

Liked by Lisa Lucier, lioness

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@phillipc421

What types of exercises? I had them look at my ears pretty thoroughly. They assured me the cause was not my ears but I did vestibular rehab therapy anyways.

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@phillipc421 I forgot to tell you Ear Dr sent me for testing lasted 2 hr,s haven't heard from ear Dr till 14th but my PCP told me one recommendation was the ear exercises I explained in another post

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@lorirenee1

Phillip, For what it is worth, because your symptoms started 2 months after your wisdom teeth procedure, I would go with your gut, and pursue your teeth at this point. I would get an oral surgeon to go in there, and see what is going on, and if something can be done. I am wondering if you could have had a autoimmune response to your surgery. God, what you have gone through. I assume you are a young person, and if nothing else but this surgery has been done to you, pursue it further. What has been going on with you seriously caused the hairs on my arms to stand up. It is horrific. Pursue this dentistry. God knows if an oral surgeon will even touch you. Oy, too much. Good luck to you….you are way too young for this…..Lori Renee

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Thank you, I am pursing some oral surgeons. I'm going to request they just cut in and see if there is some infection. Many are saying it is a non existent problem but the xrays have proved otherwise. I will keep you posted.

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@phillipc421

Thank you, I am pursing some oral surgeons. I'm going to request they just cut in and see if there is some infection. Many are saying it is a non existent problem but the xrays have proved otherwise. I will keep you posted.

Jump to this post

Good luck pursuing that with the oral surgeons. I think it may be a good idea. Lori Renee

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@phillipc421

Thank you, I am pursing some oral surgeons. I'm going to request they just cut in and see if there is some infection. Many are saying it is a non existent problem but the xrays have proved otherwise. I will keep you posted.

Jump to this post

@phillipc421 Have you seen the oral surgeon yet ? Let us know what he says. On the 14th I will see the ENT Dr. to see what the results where of my testing and can reply then as to what was found.

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Hi:
I have all the symptoms that you have and I also cannot get an answer. Mind started in 2013. I have been all over, John Hopkins, Mayo Clinic which I found them to be useless, Cleveland Clinic which they diagnosed me with Autonomic Dysfunction which I do not believe I have, and many other Clinics. I did have mercury poisoning 3 times but I was able to detox but who knows maybe some of the Mercury got past the the brain barrier. I am so tired of looking for an answer. I was also very active now I feel like a wet noodle. All I can suggest is: Get a toxin panel test and a food allergy test, I did find that I had a lot of toxins in my small Frame body and I had a lot of food allergies plus I found out that I am Celiac, Lactose and Fructose Intolerance. Who knows maybe all of the Intolerances and toxins change my DNA and some way damage my entire system. I can’t stand going to Doctors anymore plus they treat you like your nuts.

Liked by phillipc421, zozo101

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@redhead63 I know you addressed this to 23 but I'm having sane problems , dizzy and balance Haven't found any Dr either the ENT isn't very helpful One thing I discovered on myself when I look up I'm dizzy so I'm wondering if it's my neck any thoughts

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@phillipc421 @lioness @redhead63 Dizziness, nausea, and vertigo can be caused by a neck problem. This happened to me because of muscle spasms that moved my vertebrae out of alignment because of a spine problem. If my C1 or C2 were turned or tilted, and then I look up, it started the vertigo instantly. There are problems like Bow Hunter's Syndrome, where something like this happens from turning the head. When you look up, you can jam the back of the skull back on the spine, and if the spine is not aligned properly, it can cause issues. Some problems like this alter the blood supply to the brain by compressing the vertebral artery.

When this happened to me prior to my spine surgery, I was trying to photograph birds migrating overhead, and even though I put my head back into a normal level position, the dizziness did not stop and I could not stop myself from falling backward. My physical therapist was able to realign my spine and correct this and stopped the dizziness. It doesn't happen anymore since I had surgery for cervical stenosis. My suggestion would be to have an evaluation with a physical therapist who works with spine surgery patients to assess the proper alignment of the way the skull sits on the spine and spinal alignment.

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@jenniferhunter Thanks Jennifer I'm going to my chiropractor tomorrow I also have a sciatic problem I want to talk to him about

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I just joined this group and saw your post. I have had BPPV since I was six or seven years old. I am getting ready to turn 63. I was finally diagnosed 23 years ago. My doctor said that I had it longer than any other patient except one man and he was older than me. I had it so bad that I would have to spend five to seven days in bed in the dark. Over the years I had brain scans blood work, they tested me to see if I was diabetic. I went through three hospitals. I would only have really bad spells maybe a couple times a year. Anyway, I was so dizzy for a few months and I couldn't drive. I had to go to my regular doctor and when I told him what was going on he told me about an ENT that specialized in dissiness. He told me he swears he helped his dad. My doctor was incredible, he actually understood the hell I was going through. He ran tons of tests on me and everything came back with me having BPPV. This doctor only dealt with cases of dizziness. The patients in his waiting room were from all over the country and a lot of airline pilots. The crystals in my inner ear were out of alignment and his did his version of the Epley maneuver. Anyway where I'm going with this is, after the maneuver you can't go to the dentist for like six weeks. I waited the time and a couple of more weeks and wouldn't you know, it knocked my crystals back out of alignment. A normal ENT is not going to help you if that's what you have. So much of what you wrote is so much like my problem. If you have any questions let me know.

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