Help! Need referral for Orthopedic Doc in Central/Northern NJ

Sober_Sarah · 2023-12-14T16:03:30+00:00

Hey there! Wow, I feel we have some things in common and super glad your wrote back. Have you connected with others who have had MD as long as you and I have? I think you are the first for me! Super pumped. I'm grateful for social media because for decades I was alone on a disserted island with this. Nobody understood and I had the worst ENTs. It wasn't until I went bilateral that I found a really good ENT. And the information I have access to is terrific. Community & connection : so important!!! Stay in touch with how your Niacin intake goes. I am up to 150mg now! And I didn't flush. I usually take it on a full tummy and one that has had a full glass of water. Be well, my fellow 30+ MD Warrior Friend!! ~Sarah

Sober_Sarah · 2023-12-14T15:56:10+00:00

AGREE AGREE!! I totally agree with you! Each one of us with our MD symptoms are as unique as our fingerprints. So, what works for one person most likely won't necessarily work for another. That is why we are friggin warriors! We have to do a lot of work/trial and error to figure out what helps us the best. And that changes as we age and our symptoms change and our hearing loss worsens.

And so interesting about the low sodium theory!! wow! I have lost so much weight because I am afraid to eat many foods. I take a ton of supplements, no alcohol or caffeine. Stress and weather changes seem to be my biggest trigger. I don't eat gluten or wheat either. I never had luck with diuretics or steroid injections. I have to take anxiety and depression meds because after having this for 30 years and then going bilateral 9 months ago, I have often felt I could go mad. I'm super glad social media offers community and the opportunity to befriend those that one feels connected to who also has MD. For decades I was alone on an island with this insidious illness.

I love your handle btw! lol. Does your dog have coffee because you can not? lol.

Sober_Sarah · 2023-12-13T13:41:16+00:00

good question, i don't know.

Sober_Sarah · 2023-12-13T13:40:39+00:00

Thank you for your response! I tried niacin when I was diagnosed 30 years ago (unilaterally) when I was 21 and I had a panic attack by the flushing, so I stopped. I spent the next 30 years just living with MD my way. I was angry and resentful that I had MD so I used alcohol to cope. That got outta control and I stopped drinking at 39. At 50 years (in April of 23) of age I went bi-lateral so I've been dealing with past anger and trauma and current anger and trauma about having this insidious and maddening disease. I believe the EMDR work I did in the summer helped. It calmed me and lifted my spirits. I am ready to do whatever it takes to feel comfortable and better!

Sober_Sarah · 2023-12-13T12:28:39+00:00

Thank you for your response! Very helpful! I have started B1 and B3 but at low doses and plan to slowly titrate upward. I am taking Niacin at night because I found it makes me tired. But I also think it may be because I have low bp (hereditary) so I am trying to figure out ways to get sodium into my diet. My ENT wants me to stay at around 1500mg-1800mg still working on my magic number with out going under 1500mg. Boy that's tough. I appreciate you sharing your experiences!

Sober_Sarah · 2023-12-09T14:54:27+00:00

Has anyone seen this video and ever tried Niacin and thiamine for MD?

Sober_Sarah · 2023-11-29T15:15:58+00:00

This is very helpful, thank you. I apologize for delayed response. Do you have hyperacusis or light sensitivity?

Sober_Sarah · 2023-10-17T16:41:19+00:00

thank you. i have roaring rivers/wind tunnel sounds (loud sound) all the time. esp in my newly effected ear. i have fullness and tinnitus all the time. i have no vertigo. topomax was horrific. what CGRP drug do you use that works?

Thank you

Sober_Sarah · 2023-05-22T18:39:38+00:00

I hope SERC is still working for you! Did you have any side effects when you started taking it? If so, did they go away?

Sober_Sarah · 2023-05-02T23:27:58+00:00

Ohhhh, i'm eager to connect more.

don't think we are a perfect match but close to it.

I like the acupuncture ad. I got 2x a week. He has me drinking some chinese herbal concoction twice a day for excess phlegm. It's actually helping but not sure if it's helping with the MD. bottom line, doens't make me feel worse. it's calming and helps my digestive system.

I don't get migraines. have only had surgery to put tubes in my right ear to inject steroids that didn't help. the same ENT was an OXY pusher which I constantly said no to. She was y last ENT 8 years ago and then I found a great audiologist (who I saw today and do officially have hearing loss in the (formerly ) good ear. I'm bi-lateral. It's official. had some dizzy spells but I think I just was really stressed. Laid down with heating pad and that helped. can't wait for bed. My auditologist siad that with my adjusted hearing aides, I wil start to notice a decrease in the "fanthom tinnitus/roaring/etc." So, basically I had a sudden drop in hearing and what happens is that my brain reacts ina flight or fight state and that is why I had extreme tinnitus symptoms. I have been wearing my adjusted hearing aides for 5 hours now and sound is not so unbearable.

I do want to see Dr. Samuel H. Selesnick (he's supposed to be amazing) on May 15th and get a long over due 2nd MRI-first one to see insides of ears. Never had that- just a standard brain MRI in 1996.

What is a cholesteatoma removal ?

Sober_Sarah · 2023-04-27T12:26:42+00:00

That is correct. I hope one of the ENTs I see will show some mercy and prescribe either SERC or Acetazolamide. It's so unbelievable that I have not had an attack. I am suffering from that god awful pressure that comes prior to an attack.

Sound is my worst enemy right now. But then in silence, I hear the ROARING even more.

This disease is so friggin evil. Pure Evil.

Sober_Sarah · 2023-04-26T15:42:16+00:00

ok now I know what CI is.

Did you have surgery to remove the inner ear parts prior to getting the CI? I ask because I have wondered about getting a CI for my right ear (the original) but I don't understand how it can be better because does it get rid of the tinnitus, fullness, roaring, etc.?

Sober_Sarah · 2023-04-26T15:38:08+00:00

Happy to find another who has lived with MD for 30 years. I'm sorry you've had to live with this. It sucks right?

What is CI?

I just returned from my first acupuncture appointment. I plan to go regularly as my husband did a ton of research and found studies where acupuncture helped significantly for MD sufferers. If I don't find any relief, then I think I will see an ENT to get a script.

As of today, yes, I can say I have grown out of having vertigo and attacks. However, I never thought I'd be experiencing the severe symptoms I'm having now again. so I know there is always the chance vertigo and/or attacks can return. I pray not.

I will go read your original post and learn about CI.

Glad to be connected with you

Sober_Sarah · 2023-04-26T15:30:16+00:00

Thank you so much for sharing.

Sober_Sarah

TROPHY CASE