Hi Fiona

I'm so sorry you are going through this. It's a difficult journey trying to find answers. Even once you get a diagnosis, the treatments can vary depending on your individual response, the doctor and your resources. It's a puzzle of a disorder. But, there is hope! Have you tried seeing a neurologist? One who specializes in balance disorders is preferable. Also, I had a lot of success with Vestibular Therapy (with a physical therapist). Slowly you will begin to find answers and support. Keep looking. My physical therapists turned out to be my best support system and provided so much education. 

Meanwhile be kind to yourself and patient as you explore options. It will be more manageable once you feel more in control. Keep us updated. 

Karen

Hi Fiona,

First let me say I am so sorry for what you are going through however you've come to the right place as far as people understanding your story.  I have been dealing with vestibular issues now for 14 years and the journey is long with many obstacles in the way but you can survive all this craziness.  I am assuming your nausea is because of the constant "movement" or dizziness and it is indeed very real.  Finding a good neurologist which specializes in vestibular or balance disorders would be the best if possible depending on where you live.  There are medications to help alleviate those dizzy feelings but sometimes it's a trial and error approach to see which works best for you.  There is also medications to counteract the nausea feelings you have and you should ask for them.  The frustration level you are feeling is strong and understandable as unfortunately most of us have had to search over time and providers to find the one person who seemed to be able to help us.  Don't give up on this journey.  Do as much research, asking that you feel you can handle and in between those times be good to yourself and don't beat yourself up.  Patience is extremely hard to have when it seems like everything is falling apart but you will find the provider that will be able to direct you best.  Please stay in touch.

Vicki

Posted by: @floramac

Hello,

I started having dizziness approx 5 years ago. I also started getting intermittent bouts of nausea.

I was treated for BPV with the Epley manoeuvre and then when the nausea became regular, labyrinthitis.

 Neither treatment helped. I had regular blood tests and an MRI on neck and head.

The dizziness stayed and the nausea eased with some bad days.

Finally in 2019, my GP referred me to a geriatrician. He put me on low BP tablets - made me worse. Vertigo meds, made me worse. Checked 're the pituitary gland and did the tilt table test. At the last call we discussed vestibular disorder specialist (I have had tinnitus in left ear for 12 years and get some ear aches), ( I saw an ent specialist when I was diagnosed with labrynthitis who said all was ok.) . Now I have received a referral for an echocardiogram! No discussion just the referral.

The nausea has returned with a vengeance and every day the dizziness, fug, off balance is there all day ( worse when moving around). Some days I just don't know where to turn. My GP referred me as she had no ideas.

I try to stay positive but I really feel I can't go on like this.

I am now considering going private but what kind of specialist should I see.

I will be so grateful for Any thoughts or opinions.

 

Thank you

Fiona

 

Hi Fiona,

I can sympathize with you. I have had this problem for 2.5 years. I was beginning to think I was going crazy and maybe needed mental health.

Do you have neck pain also? When I had neck pain, shoulder pain, and pain in the occipital area, my dizziness and nausea were worse. 

It also got worse when I talked to people and nodded my head up and down or sideways... Which was a lot!

I went to several GPs, an ENT, eye doctors and finally went to a chiropractor(he didn't crack my neck, but used a stimulator tool). I was never a big believer of chiropractors, but after one visit, I felt better.. For a couple of days anyway. I continued to visit him for several weeks, had a couple of neck and shoulder massages, and went to Physical therapy (4 weeks)for neck exercises and vestibular exercises. I now do my neck & eye exercises twice a day and feel a whole lot better. Not perfect, but I will keep doing my exercises and hopefully soon, I can get back to normal. 

I would like to thank VEDA for as I was searching the web for my symptoms, they were the ones who lead me in the right direction. 

Hope this helps!

K

Hello Fiona!

Hope you fel better now. You have a diffuclut journey but I am sure you will go through it. I cannot say something new, just want to support you. If you still here on the forum please let us know how do you feel now.

B

Acupuncture.  I waited 4.5 years to give it a try, primarily because I've never put much faith in Eastern medicine.  I've been doing sessions now once every two weeks for about 4 months.  I'd say the severity of my labyrinthitis has gone from a 6/10 to a 3/10 during this period of time.  My dizzy spells have lessened from one or two a day to more like one or two per week.

A little background on my condition so that you can decide how comparable it is or isn't.  I have inner ear damage from ear aches when I was an infant, and I played college football, so I've seen my share of concussions.  5 years ago I got the flu and had a very high fever - this seemed to initiate my labyrinthitis.  For me, my dizziness was triggered by visual movements and sounds.  Walking down the aisle of a busy grocery store was terrible.  The doppler effect of a car driving by was sickening.  I had to stop going to the movies.  You get the idea.

I saw specialists and tried the gamut of medicines and physical therapies.  Nothing stuck... until I started-in with the acupuncture.

I noticed an instant improvement after my first session.  It moved me to a 5/10.  My wife commented that I seemed like a happier person directly after that first session.  I've continued to see minor improvements with each additional session, so I'm definitely going to continue - even forever if I have to.

As a note, I did try skipping a session a few months ago.  During this long stretch with no sessions, I felt the dizziness creep back in to a 4/10.  So, two weeks appears to be a good interval for me.

It's not uncommon for people to feel frustrated and concerned about their health when they experience chronic symptoms like dizziness and nausea.

It's good to hear that you sought out medical help and found some relief with chiropractic care and physical therapy. It's important to have a team of healthcare providers who can work together to address your symptoms and help you improve your overall health and wellbeing.

In terms of neck pain, it's possible that it could be related to your dizziness and nausea. The neck plays a critical role in our sense of balance and equilibrium, so issues with the neck can impact our vestibular system and lead to symptoms like dizziness and nausea. It's important to address any neck pain or discomfort as part of your treatment plan.

I would encourage you to continue with your exercises and keep working with your healthcare providers to manage your symptoms. It's also important to take care of your mental health and seek out support if you're feeling overwhelmed or anxious about your symptoms.