r/Menieres • u/bIakley • 7d ago
NC help
Hey all, just for some background, I’m on the younger side (so they say) of Ménière’s. I was diagnosed at 28 after having 5 major spells in a few months span. Until this week, Ménière’s was an afterthought for me because my last spell was over 4 years ago. I’m just recovering from my 3rd major multiple hour spell in the past week. I do not currently have an ENT or any treatment at the moment and I’m so desperate to try to get seen ASAP. I’ve reached out to 4 ENT places in North Carolina and have not received a response from 3. The other says mid October is the first available appointment. I have a 2 year old daughter I drive around frequently. The idea of this happening while being on the road with her or with her alone in my care is haunting me.
Also now that the attacks are back I find myself having panic attacks when the slightest off balance feeling occurs. I almost feel like I’m developing PTSD or something.
All this to say, if anyone has any suggestions on how to manage this with no treatment (other than drug store meclazine) or of any ENT in the NC area that could see me quickly to try steroid shots or something, please let me know. My right ear has lost 50% hearing already and I’d happily lose it all if it meant no more of these vertigo spells. I feel for each and every one of you because unless you live it, you just don’t understand.
TL;DR: I’m freaking out because symptoms are back after a 4 year hiatus and I have no immediate treatment options and no ENT that can see me anytime soon. It’s affecting my job and home life.
1
u/yes420420yes 7d ago
You can always go to a family doctor for some emergency meds and maybe the start of some diagnostic ?
PTSD with Meniere's is a real thing.
sublingual zofran (odansetron) and sublingual benzodiazepine would be good emergency meds beyond the meclizine (which is much to mild for this)
Car driving with an active Meniere's and vertigo attacks is a legally problematic thing, you become an uncontrolled one ton rolling metal bin...
Its interesting that you had a cluster and then four years of no issues, but Meniere's comes in all shapes and stripes. Getting to a rheumatologist to check for AIED and get a blood work up for inflammatory markers might be a good idea (if your family doctor does not feel so inclined).
From the ENT you need an MRI to check for neuromas, just because, not because its likely for you.
Some thought about vestibular migraine instead of Meniere's might be a good idea, if you have any other indicators that this may be a migraine for you, there is some large overlap between the two, but migraine has lots of treatment options, Meniere's does not really.
Get some vestibular rehabilitation lined up, can not start early enough if this is really Meniere's, its great supportive treatment for Meniere's
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u/bIakley 7d ago
Vestibular migraine was something I was curious about as well but I’ve had pretty significant hearing loss in this ear. My ear has not stopped ringing since Friday before last. It’s maddening. Do you think if my PCP could prescribe oral prednisone that it would possibly help? At least to get me until a PCP appointment..I just don’t have much faith that my family doctor would know how to treat this and just being honest, benzodiazepines would be a last resort for me because the few times I’ve had them in my life I’ve been extremely sensitive to the effects and didn’t love the feeling. That being said, obviously if it was the answer to these spells I’d do quite literally anything.
The only common thing so far has been all of my recent spells have happened between 3-6pm. Don’t know if that has anything to do with anything but just the only thing in common with them.
Thank you for taking the time to answer. Means a lot. Not in the best place mentally at the moment. Just kind of feel like my life has been turned upside down.
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u/yes420420yes 6d ago
You might be surprised by your PCP, mine is a thousand times better then most ENT I have seen for this, he was the first to mention Meniere's and he is always willing to play within reason....lets hope yours is helpful too
vestibular migraine is the latest idea in Meniere's (its ten years old, but it is getting used now). Some form of migraine (nerves that are over firing and causing the blood vessels to get inflamed affecting blood flow and possibly lymph drainage) makes a lot of sense as an underlying issue of Meniere's. Articles suggests that 3/4 of patients can be helped that way, that's a lot better then the typical 30% for all the other classical stuff (beta histine, diuretics). Depending on where it hits the nerves/vasculature exactly it maybe vestibular or cochlear migraine or both.
Any form of sudden or unexplained hearing loss is reason to go to the ER and get prednisone, ideally within 72h of occurrence, but even if its further out, its worth trying. If you get some or all hearing back, then great and it tells you that there is clearly inflammation involved somewhere. If it does nothing for you, you may gain some clue that your issue is not inflammation driven....that's also useful to know. Your PCP should be fine with that, but if not, try an ER, they have a lot less inhibition of using drugs properly.
Benzos are a funny thing, they are used to calm you down during attacks (which make them more palatable), but benzos can also act positive in migraines....so if migraine is the underlying issue, then benzos may do more then just help you relax and endure the attack, they may actually treat the issue (somewhat, not in the best way though). I never had a particularly great feeling with benzos, so I never had issues of dependance but I do carry them around with me always just in case (and I had no attack to speak of in ten years) - the PTSD from this crap is amazing.
David Buchholz 'Heal your headache' might be worth getting from the library. A bit dusted by now, but the principles still hold.
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u/Legitimate_Boot_9964 6d ago
Hi! So sorry you’re going through this. I have had it for 35+ years and I rarely get vertigo. Last time was summer of 2017. however, I just joined this group because two days ago I had a drop attack terrifying! But I did just fly back home 36 hours before it happened. My triggers are flying, exposure to musty mildew old buildings also water, I do not go in pools, hot tubs or the ocean. There are no medications that really help but you can try Flonase, but you have to be consistent with it every day. You can also try Claritin D to dry things up also the Valsalva maneuver which is to hold your nose, tilt your head away from the side with the bad ear and gently blow until you feel your ears pop. I just saw my ENT after the drop attack and he ordered a brain MRI just to be on the safe side and some blood work. Don’t panic too much about not being able to get an immediate ENT appointment because there’s really not much that can be done. Wish you the best and be careful.
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u/the_flyingmunk 5d ago
If you are in the Raleigh / Triangle area, you may want to look at Duke. My Otologist is at Duke. Sometimes there’s a wait to see him for follow-ups, but with size of their Otolaryngology department, they can typically find someone in a reasonable time. I think the important thing to do going forward is to have a treating clinician that you see on a regular basis. Once you establish this and keep up your regular visits, it will be much easier to be seen. It always takes time for the initial consultations, because they have regular patients, and initial appointments are typically longer, needing larger appointment windows, which they don’t always have.
I’ve been seeing the same Otologist for 4 years now and can message him and get in the next day. He’ll just see me over his lunch hour or squeeze me in.
You have some good suggestions here. Go to your PCP if you can’t get in. They may not be able to give you a steroid injection, but should prescribe oral prednisone if warranted.
Good luck!
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u/bIakley 5d ago
I’m waiting on a call back from Duke. Hopefully soon! I’ve also decided the small amount of caffeine I intake daily (less than 100mg) isn’t worth the risk so I’m discontinuing any caffeine. Hoping that helps as well! I do plan to keep check ups with an ENT for the foreseeable future whenever I do get an appointment with one. So far the earliest available is 3 weeks from now.
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u/the_flyingmunk 5d ago
It’s a tough thing to deal with in the “early” stages, if you don’t have some type of care team that can guide you. Yes, I would cut out all caffeine, reduce your sodium, drink lots of water, and try to get a bit more sleep. Since you don’t know what your triggers are, be proactive and reduce anything that might stress your body - dietary, mentally, physically. Hopefully, once you see the doctor, you will develop a better care plan and “management” will improve.
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u/Miyanc 7d ago
If your in the Charlotte area, I go to ceenta, and have seen dr. Sicard for almost 20 years. I also see dr. Donnolly for migraines. Both have been great for me, willing to get my insurance to comply and try anything we think will help. I do believe the migraines and menieres combat each other. I fought with a neuro for a few years to help me out, she was terrible. Wouldn't discuss my menieres saying she was only treating migraines. At some point I found vestibule migraines online and when I brought it up she acted like it was news to her. I was already on the wait list for donnolly so I stopped going. I try and tell everyone the importance of finding doctors you like and trust. I had asked sicard what doctor would he go to if it was him or if it was his kid and he said donnolly. We are all different, migraines and menieres are very different in many of us. What works for 1 doesn't for others. That's why having drs that are willing to try things is key. Good luck.