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Help 6 Months No Real Diagnosis or Support

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(@kalinaeb)
New Member
Joined: 4 months ago
Posts: 1
Topic starter  

Sorry to start a new threat, wasn't sure how to word everything so it's a rambling of words and my journey basically. 

I've been struggling with nonstop vertigo for over 6 months now. It started with a sinus infection and ear pressure after it wasn't treated properly. First episode was at work after keeping my head down for a bit and after lifting it everything was moving with a delayed reaction, I was nauseous and lightheaded. Got antibiotics and told to see ENT and neurologist but booked months in advance. I tried and tried to get someone to see me. I kept getting random feeling of being pushed to the right. These would be short episodes but soon turned to me feeling off balance, like my vision movement was delayed. They would linger but dissipate, at this point getting more frequent. Finally saw ENT, got PT referral but that was a wait and neurologist cancelled day of and rescheduled for 3 months out. One day I had to be back at work where I'm pretty mobile. By end of day I walked around the corner and everything was moving like on a boat and I was completely off balance and got really lightheaded. After that episode I've had nonstop balance issues, feeling like I'm constantly on a boat or plane even when not moving. It fluctuates between lighter stormy waters to full on storm and everything is moving and swaying. I've had neck pain on the right side that comes and goes. I've also noticed my vision has gotten much worse so I have to wear glasses more frequently. My head movements looking down or to the left tend to make the symptoms worse. Finally seen neurologist and was told there might be tightness in the neck muscle based on head MRI and was told to see PT. I've been doing the recommended sessions given but I'm truly not seeing any results and was told it could be the neck, maybe the inner ear or maybe the eyes. I feel like everything is just a maybe and I'm not getting any better at all. It's been months where I can't work and if this continues I won't have my job anymore. I'm constantly nauseous and my symptoms are so bad that Im in bed and have trouble getting ready in the morning. It's hard to leave the house for appointments and my symptoms of the waviness and movement of surrounding and lightheadedness get much worse the longer I stand or walk. I also get the feeling of being completely detached from myself and everything which has been purse anxiety. I'm trying to be positive but it's so hard and I feel like I'm being pushed off and it's always, well see you in couple months. I don't have months and months and I feel like no one understands what I'm going through and I like this will never go away. 


   
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(@rachel)
Active Member
Joined: 3 years ago
Posts: 8
 

Posted by: @kalinaeb

Sorry to start a new thread, wasn't sure how to word everything so it's a rambling of words and my journey basically. 

I've been struggling with nonstop vertigo for over 6 months now. It started with a sinus infection and ear pressure after it wasn't treated properly. First episode was at work after keeping my head down for a bit and after lifting it everything was moving with a delayed reaction, I was nauseous and lightheaded. Got antibiotics and told to see ENT and neurologist but booked months in advance. I tried and tried to get someone to see me. I kept getting random feeling of being pushed to the right. These would be short episodes but soon turned to me feeling off balance, like my vision movement was delayed. They would linger but dissipate, at this point getting more frequent. Finally saw ENT, got PT referral but that was a wait and neurologist cancelled day of and rescheduled for 3 months out. One day I had to be back at work where I'm pretty mobile. By end of day I walked around the corner and everything was moving like on a boat and I was completely off balance and got really lightheaded. After that episode I've had nonstop balance issues, feeling like I'm constantly on a boat or plane even when not moving. It fluctuates between lighter stormy waters to full on storm and everything is moving and swaying. I've had neck pain on the right side that comes and goes. I've also noticed my vision has gotten much worse so I have to wear glasses more frequently. My head movements looking down or to the left tend to make the symptoms worse. Finally seen neurologist and was told there might be tightness in the neck muscle based on head MRI and was told to see PT. I've been doing the recommended sessions given but I'm truly not seeing any results and was told it could be the neck, maybe the inner ear or maybe the eyes. I feel like everything is just a maybe and I'm not getting any better at all. It's been months where I can't work and if this continues I won't have my job anymore. I'm constantly nauseous and my symptoms are so bad that Im in bed and have trouble getting ready in the morning. It's hard to leave the house for appointments and my symptoms of the waviness and movement of surrounding and lightheadedness get much worse the longer I stand or walk. I also get the feeling of being completely detached from myself and everything which has been purse anxiety. I'm trying to be positive but it's so hard and I feel like I'm being pushed off and it's always, well see you in couple months. I don't have months and months and I feel like no one understands what I'm going through and I like this will never go away. 

 

This post was modified 3 months ago by Chandra

   
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(@rachel)
Active Member
Joined: 3 years ago
Posts: 8
 

I am glad you started a new thread and to  be honest i am going to start one myself.  I feel really sorry for you as i do myself.  After reading some of these posts i no longer want to spend money on the MRI or scans.  I will start a new thread.  I have a story to tell and i feel im lucky to be alive at this moment so should speak out.  


   
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(@chandra)
VeDA Staff
Joined: 2 years ago
Posts: 12
 

@rachel

Hi Rachel,

Your symptoms started with the onset of a sinus infection. It sounds as though you may have had Vestibular Neuritis. Vestibular Neuritis is an inflammation of the vestibular branch and not considered a chronic condition. Usually lasting the duration of a cold or flu would, a few days to weeks. You may be left with chronic symptoms afterwards due to the damage that may have been caused.

The vision issues that you’re describing sound like there is some damage to your Vestibulo-Ocular Reflex (VOR). Your PT should be able to work with you on this with gaze stabilization or vision therapy exercises. I would also recommend seeing a Neuro-Ophthalmologist or NeuroVision specialists to make sure there isn’t another underlying issue that is causing the symptom that you’re experiencing. I know that this would mean more tests and another practitioner, the good thing about tests coming back negative is it rules out some of the major diagnoses. The not so fun part is with vestibular disorder the symptoms experienced mimic so many other diagnoses, sometimes it takes time before the correct one is found.

In regards to the tightness in your neck muscle, this is not uncommon as the symptoms of vertigo and dizziness causes people to naturally tense in resistance to help maintain stability. There is also another condition called Cervicogenic Dizziness, this is where the nerve within the neck is being affected. Oftentimes a simple adjustment will relieve the pressure and reduce the symptoms of dizziness. For this I would recommend working with a chiropractor who has experience with vertigo, cervicogenic dizziness, or the upper cervical. Not all chiropractors have a focus in this area, if you would like help locating one please email [email protected] and I would be happy to help you! Please also know it is ok to locate a new PT if you're not feeling your current one is helping. 

Here are a few additional articles for further reading that may help:

Vision Challenges with Vestibular Disorders
The Connection between Vision and Balance
How to Deal with an Acute Vertigo Episode
How Vestibular Dysfunction Transforms Into Symptoms of Depersonalization and Derealization

This post was modified 3 months ago 2 times by Chandra

   
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(@libbyboyd)
Active Member
Joined: 1 month ago
Posts: 40
 

I think... ur symptoms sound very alarming and I understand your concern and frustration. It is important to continue to see your doctor and get the treatment you need, even if results do not come immediately. In addition to physical treatment, the support and understanding of loved ones can also be very important in such difficult situations.


   
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