I have had vestibular issues for over three years now with constant dizziness, balance issues and episodes of violent vertigo that vary in duration and length between them- very unpredictable. And I did the ENT thing. I did the vestibular clinic thing. And in the end I was told I was undiagnoseable. I had too many existing conditions that could cause vertigo… so who knows, eh? Could be anything… so why bother figuring it out so I could get treatment? I mean I was just stuck in vestibular hell and all.
I am taking Clonazepam which suppress the vestibular system and dampened my symptoms moderately. But not all the time. Sometimes the vertigo would just go nutbars severe and the medication did nothing for it. Sometimes every day for weeks and I was laid out. My hearing would go right out and horrible ringing would happen. I had some close calls on serious falls so I had to use the cane in the house. But mostly I was Glued to the couch. And extreme nausea. Like I am going to vomit and No I DO NOT WANT TO EAT. And non-functional. Unable to do a damn thing. And after… totally exhausted for a day.
I called my doctor during one of these severe bouts and said something is Wrong. And my medication is Not helping. I am laid out. I am going to fall. And she said it sounded like Ménière’s disease. Which I had considered in the beginning of this adventure. But of course who listens to the patient anyway. But the thing is… all these vertigo conditions are pretty damn similiar. And I do have chronic migraine. So that would almost lead one to believe it is severe vestibular migraine. However, it is common from people with Ménière’s disease to have migraine as well and to be misdiagnosed with vestibular migraine. And who knows what else it could be because symptomatically it could be a lot of different things. Some ruled out by my test results but hard to say since they only ever tested me with dizziness and balance problems, not With a vertigo attack present.
So she gave me SERC to try.
And damned if it doesn’t help immensely with the vertigo. It leaves me some dizziness still and still with balance issues. But no on my ass vertigo. I mean, it is astonishing. Boom. Gone. I need a bit more than she thought I would to get the effect though so I will have to talk about the dosage with her.
Problem is that it does a number on my stomach. Like Ouch pain. Like NSAIDs do. So not sure what I can do about that because I sure as hell do not want to stop taking it now that I have had a small taste of the effects. I so so so wish I had this years ago. I mean DAMN.
It does imply I have Ménière’s disease but I will have to talk to my doctor about that for an official diagnosis. Maybe it works for other things? I have no idea really. Not exactly something I want but if I get an official diagnosis at least I know what I am dealing with. And then I know what sort of lifestyle changes I can make without doing the exact wrong sort of thing.
I know it works very well in the day and I need more at night when it get more severe. But I am still only taking the 3 pills she recommended at the higher dosage she said I could try. The half dosage she said to try first, doesn’t cut it.
However, with Ménière’s disease it does mean eventually I will lose my hearing on my left side or maybe both sides. And be left with permanent balance issues. So, yeah, not the sort of vestibular condition a person wants. It is one comorbid with migraine disease though. So maybe it is. I am fine if it is. This is rather something I REALLY want an answer to so I can move onto treatment, like this med, and lifestyle changes and whatever I need to do to help manage it in whatever way I can.
If it is something else that equally responds to SERC then name what that is… Just Name It and I will deal with that the same way. There comes a point when you just need a diagnosis so you can cope, adjust and begin to manage it. It is freakishly bad sometimes and that is not cool. Not cool that the one medication I have really only helps modestly at its Best and when it really acts up I am totally screwed up. Not cool that neurologist labelled it undiagnosable and just… left it at that. With me in limbo… stuck with it. That is so not cool.
I don’t know what responding to this medication means at this point. I love that I am. Frankly I am astonished I am. It isn’t perfect but it is bloody well helping me function a whole lot better. I can deal with the dizziness and balance issues… I have those all the time anyway for the last 3 years. And the Clonazepam does moderate the dizziness. I just really want answers. I really what that diagnosis to cope in more effective ways. Being left in limbo sucks.
So I guess I will see what she says. Or maybe she will send me to yet another person. Who knows.
Facts about Ménière’s disease
- It affects the inner ear
- It tends to occur in your 40’s and 50’s
- It is chronic but can have episodes of remission
- It causes vertigo, ringing in the ears and hearing problems
- The cause is unknown but it is speculated it is caused by changes in fluid in the inner ear and could be genetic, due to autoimmune disease or allergies.
- Vertigo attacks lasting a few minutes to up to 24 hours
- loss of hearing in the ear affected
- Ringing in the ear affected (Tinnitus)
- Nausea or vomiting from the vertigo
- Loss of balance
- Feeling of fullness in the ear