HELP! New symptoms everyday, Vestibular Neuritis,nerve pain, Ear pain?

Posted by lindsayskye @lindsayskye, Apr 29, 2019

Hello I just want to thank anybody who has any advice or personal experience in advance.

I'll start from the beginning. Last June I became extremely dizzy nauseous ended up in hospital for 9 days they had told me I had vestibular neuritis put me on bed rest for two months and lots of medication.

My whole life flipped upside down literally and remained everyday as if I was one of Merry Go Round. I have not driven in 9 months everything has been taken away which is very hard for me as I was a very active mom and hospice nurse, I have spent my whole life taking care of others.

About 3 months ago I started having severe ear pain I was put Gabapentin which gave me severe side effects then I put was put on Lyrica Max dose. I've gone to see an ENT had an MRI seen a neurologist and no one can give me a clear diagnosis. My limbs lose circulation very easily my right side is extremely worse I wake up five times in the night with no feeling in my arm. My neurologist has started decreasing my medication and I'm having severe side effects on top of everything else.

I'm not sure why I woke up one day with vestibular neuritis and now I am having the shooting pain numbness tingling in my arm fingers where I can't even feel them and there's no circulation.

I go to vestibular therapy twice a week a massage therapy and nothing seems to be helping. I'm so happy to be getting off Lyrica because the brain fog and speech coordination has been tampered the last two months very hard on my children and my boyfriend.  

Sensitive to
Loud noise, Light, cars, grocery stores,
Ear pain, Ear pressure, Dizzness, Tinnitus, Nauseous, Brain fog, Cant put words together, Insomnia, loss of circulation in all limbs, right hand arm no feeling cold to touch, shooting pain, muscle twitching

Is there anyone else out there that is experienced what I'm going through or has any advice?

@lindsayskye Hi Lindsay. I am a Mayo spine surgery patient and I also have Thoracic Outlet Syndrome. A lot of the symptoms you described are ones that I have had because of TOS. It causes impaired circulation and is positional, and often causes an arm to be completely numb while sleeping. It is usually worse on one side, and for me that tightness pulled up into my jaw to my ear, and affected the dental fillings on one side of my jaw from the pressure. I had TOS and cervical spinal stenosis at the same time when I came to Mayo as a patient. One of the tests for TOS is a doctor listens to the pulse in your neck and has you turn your head and for me the pulse would stop. It has caused breathing problems when one side of my chest doesn't move as much as it should because of tightness. Prior to my spine surgery, TOS would cause muscle spasms that would turn or tilt my neck vertebrae and it did cause vertigo and dizziness. My physical therapist was able to realign my neck and stopped the dizziness. Since my recovery from spine surgery, the dizziness doesn't happen anymore. My hands used to get cold and turn blue or purple, and there was lots of tingling and sometimes numbness. Physical therapy with myofascial release helps a lot. Posture and core strength is really important with TOS. This is something that most doctors miss unless they are part of a medical teaching center that also treats TOS. Mayo is a good place for that. Here are some links you might find of interest. This has a lot of different links about TOS. We also have a discussion about myofascial release, so here is the link on that. MFR can help a lot of physical issues. There is surgery for TOS, but all surgery causes fascial scar tissue which can be part of the problem. MFR can help break up fascial scar tissue. I would also recommend being evaluated for a spine issue as well because these problems can have overlapping symptoms. I had a lot of spontaneous muscle twitches too. Entrapment of a nerve can cause that.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988https://www.painscience.com/articles/respiration-connection.php
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501918/
https://www.hindawi.com/journals/scientifica/2014/248163/
https://share.upmc.com/2016/08/thoracic-outlet-syndrome-symptoms-and-causes/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
http://www.med.umich.edu/1libr/CVC/997ThoracicOutletSyndrome.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4129179/
http://tos.wustl.edu/For-Patients/Neurogenic-TOS
https://www.jospt.org/doi/pdf/10.2519/jospt.1979.1.2.89
https://neurokinetictherapy.com/the-scalenes-the-dynamic-duo-1
https://free2move.com.au/thoracic-outlet-syndrome/
https://ftp.uws.edu/udocs/Public/CSPE_Protocols_and_Care_Pathways/Protocols/Thoracic_Outlet_Syndrome.pdf

REPLY

Hi, @lindsayskye – I wanted to join @jenniferhunter in welcoming you to Mayo Clinic Connect. That sounds very hard, like you mentioned, having extreme dizziness, nausea, ear pain and pressure, tinnitus, brain fog, difficulty putting words together, insomnia, pain, muscle twitching and more. Not being able to drive or function as the very active mom and hospice nurse as you've been accustomed to does sound like your life is flipped upside down.

Some other Connect discussions you may be interested in are:

– On vestibular disorder https://connect.mayoclinic.org/discussion/vestibular-disorder

– On dizziness https://connect.mayoclinic.org/discussion/23-with-near-constant-dizziness-and-lightheadedness/

– On ear pain https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain

@lioness has talked about dizziness, as has @claudia11, @redhead63 and @phillipc421. @46momof5 @garyd51 @nibor63 have discussed ear pain. I also wanted you to meet @hopeful33250, who has talked about difficulties with speech. Hoping these members will provide some input for you as you seek answers as well as some support.

@lindsayskye – how are your symptoms doing today? How are the vestibular and massage therapies going?

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@lindsayskye I,ll add my welcome also You do have alot going on Have you had the vestibular testing that's what the ENT Dr sent me for it's a 2hr test. My Dr then gave me ear exercises to put the crystals back in place this worked for me 😁 Another thing have you seen a chiropractor? My auditory nerve was being pinched also that was corrected . I have alot of back problems and feel better after I'm worked on. As a nurse your aware our nerves come from our back I was relieved from a pain in my stomach from a chiropractor treatment .I wish you luck and hope you post again.

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Hello @lindsayskye

I would like to add my welcome to those of others. I'm glad that you found Mayo Connect! We represent a group of patients who seek to share our own experiences with others in order to encourage and support.

I feel the frustration that you mentioned. Many of us on Connect have had hard-to-diagnose problems and for many of us, it has taken a number of years to find the correct diagnosis and treatment. You mentioned seeing a neurologist. Did you have a complete neuro workup with EMG, EEG, balance and vestibular tests (like a VNG)?

As you mentioned speech problems, I would also encourage you to seek out a speech pathologist for a consultation and treatment. Speech pathologists are remarkable professionals who can often put the pieces of a puzzle together and help you with your speech problems (and sometimes with a diagnosis). Are you having word finding difficulties or other speech pattern problems?

Given the length of time that you have been dealing with these symptoms do you think it might be time for a second opinion? If you do so, I would encourage you to seek the second opinion from a multi-disciplinary team such as a university medical school or a Mayo facility. I would also encourage you to ask for lowest dose of all medication that is prescribed. Many times, in an effort to get you better quicker, a doctor will give you a high dose of medication. If I'm given any medication, I research it myself and if it is not the lowest dose possible, I'll call the prescribing doctor and ask for a new prescription in the lowest dosage available. I've taken some of the same meds you have with similar problems. Have you tried Cymbalta? It has some of the properties of Gabapentin/Lyrica and helps with pain. You might find that helpful.

I'm looking forward to hearing from you regarding your progress in seeking help. Will you post again?

Liked by Lisa Lucier, lioness

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@hopeful33250

Hello @lindsayskye

I would like to add my welcome to those of others. I'm glad that you found Mayo Connect! We represent a group of patients who seek to share our own experiences with others in order to encourage and support.

I feel the frustration that you mentioned. Many of us on Connect have had hard-to-diagnose problems and for many of us, it has taken a number of years to find the correct diagnosis and treatment. You mentioned seeing a neurologist. Did you have a complete neuro workup with EMG, EEG, balance and vestibular tests (like a VNG)?

As you mentioned speech problems, I would also encourage you to seek out a speech pathologist for a consultation and treatment. Speech pathologists are remarkable professionals who can often put the pieces of a puzzle together and help you with your speech problems (and sometimes with a diagnosis). Are you having word finding difficulties or other speech pattern problems?

Given the length of time that you have been dealing with these symptoms do you think it might be time for a second opinion? If you do so, I would encourage you to seek the second opinion from a multi-disciplinary team such as a university medical school or a Mayo facility. I would also encourage you to ask for lowest dose of all medication that is prescribed. Many times, in an effort to get you better quicker, a doctor will give you a high dose of medication. If I'm given any medication, I research it myself and if it is not the lowest dose possible, I'll call the prescribing doctor and ask for a new prescription in the lowest dosage available. I've taken some of the same meds you have with similar problems. Have you tried Cymbalta? It has some of the properties of Gabapentin/Lyrica and helps with pain. You might find that helpful.

I'm looking forward to hearing from you regarding your progress in seeking help. Will you post again?

Jump to this post

Hi I have tinnitus and many other nerve related symptoms for tinnitus 60 mg of Cymbalta plus 300 mg of gabapentin at night lowered the noise 80% I Consider that as a miracle I could not handle the loud pitch noise in my ears good luck I feel it for you I’m in so much pain all the time myself I’m going to visit Mayo in a week
I hope you feel better good luck

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@jola65

Hi I have tinnitus and many other nerve related symptoms for tinnitus 60 mg of Cymbalta plus 300 mg of gabapentin at night lowered the noise 80% I Consider that as a miracle I could not handle the loud pitch noise in my ears good luck I feel it for you I’m in so much pain all the time myself I’m going to visit Mayo in a week
I hope you feel better good luck

Jump to this post

Hi @jola65 – that is good news that the noise level lowered 80% with your medications.

If you'd like, you might check out the Visiting Mayo Clinic group on Mayo Clinic Connect, just in case others may have talked about some of the same topics you may be interested in https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/.

Have you experienced any side effects of the duloxetine (Cymbalta) or the gabapentin?

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