On this long, windy, pain in the ass journey of MAV… has anyone ever gotten a secondary endolymphatic hydrops diagnosis?
I posted last month about going to a neuro-otologist and finally getting a diagnosis… of perilymph fistula. Thanks to the advice of everyone on this board I researched the sh*t out of it, and am a little wary of the dx, as I haven’t had any head trauma or hearing loss (but my symptoms do worsen upon exertion, get better when I rest/lay down).
Anyway, today I went to my GP because my neuro-oto wanted me to get off the propranolol that my GP prescribed to me for MAV (“no need for it” he said) . While there, I saw the letter that my neuro-oto sent to my GP and it said “The official diagnosis is secondary endolymphatic hydrops caused by perilymph fistula”. Yet my neuro-oto never mentioned hydrops or to reduce my salt intake. I don’t have any ear fullness/pressure either… Just lightheaded all the time with tinnitus. He did give me a diuretic, which of course is giving me the worst migraines of my life!!! I can’t effing win.
Was wondering if anyone else was given an SEH diagnosis. Can MAV cause SEH? Though I hate playing doctor for myself, and my neuro-oto has over 50 years of experience (he is 80 years old… no lie), I still believe I have MAV. When I brought up MAV to my neuro-oto he dismissed it saying that if I had MAV, my dizziness would be followed by a headache. He also said that MAV is the “flavor of the week” that doctors seem to be diagnosing
My plan is to try to strictly adhere to the migraine diet and lifestyle. I have the diet part down but for the life of me cannot get a regular sleep schedule. Being unemployed and a grad student (with evening classes), does not help! My sleep cycle is messed up… I go to sleep anywhere from 3-5am and wake up in the afternoon. When I try to go to bed early, I battle insomnia. Don’t want to take any sleep meds cos I’m so tired of taking medicine. I need some self discipline which is something that I’ve seriously lacked for my 27 years here on earth I’m pretty certain that my years of sleeping too much/too little/erratic schedule + skipping meals constantly has gotten me to where I’m at today.
I really do believe all of my dizziness problems are linked with migraine mainly because I started getting my first “classic” migraines back in August 2010 and only a few months later did all this dizziness crap start.
Anyone out there with an SEH diagnosis? Can MAV cause SEH?
I don’t have secondary EH, although as far as I know there is a link btwn MAV and EH, namely the former can lead to the onset of the latter, although don’t quote me on this. This doesn’t mean to say you have EH or PF.
You know, the thing that makes me suspicious of your diagnosis is your neuro oto saying 'if you had MAV, your dizziness would be followed by a headache. He also said that MAV is the “flavor of the week…”
This patently isn’t true which a lot of people on these boards could testify to, myself included. For many years of this nightmare I never experienced a headache. I get them occasionally now but usually completely unconnected to the dizziness. It strikes me as a rather dated approach to MAV which sees it as intermittent aura type attacks of vertigo followed by headache. Also, I don’t think it’s so much that MAV is flavour of the week but rather that people are just realising the extent to which migraine is linked to vertigo/dizziness and consequently it was under diagnosed before, when people often got diagnosies of atypical menieres or vestibular neuritis when in fact they had MAV.
Look, I’m no specialist, but before I was ready to assume I had a perilymph fistula and EH, and started to take diuretics, I’d want a second opinion. If you see a second specialist who also feels you have PF and EH, then maybe there’s something in it.
Re your symptoms getting worse on exertion. I have major problems exercising as, as soon as my heart rate goes up my symptoms get worse. I guess it depends what you mean by exertion. I am generally ok just walking around unless I am really dizzy and then obviously I prefer being quiet and still. I definitely have MAV, I responded to migraine preventatives, my grandmother had it,and I suffer from photophobia in a very severe way.
Also, I don’t think it’s so much that MAV is flavour of the week but rather that people are just realising the extent to which migraine is linked to vertigo/dizziness and consequently it was under diagnosed before, when people often got diagnosies of atypical menieres or vestibular neuritis when in fact they had MAV.
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Exactly!! This neuro-oto got rave reviews (one of the best in the north east), so I was a bit shocked/disappointed to see that he was so close minded. But it seems like everyone on this board has had some amount of difficulty getting the proper diagnosis. I am definitely going to get a second opinion!! Especially since the only other option he discussed to cure the PLF is surgery. I am not going to jump into surgery right away!!! You’d have to pay me to voluntarily lay on a table and be cut open.
What’s funny is that reading everyone’s stories online with PLF they always start off with “I was scuba diving/I was lifting something heavy/I sneezed hard and got really dizzy…” My story is not like that. More like I got vestibular neuritis and never really got my balance back. My symptoms get worse when when I exercise, but also if I’m walking around a lot, doing a lot. For example, I recently went on a vacation where my hubby and I took a 2 mile walk on the beach. All that walking in the sand, great exercise but by the end of it I was so lightheaded, I felt like I had chugged 2 glasses of wine!
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I never experienced a headache. I get them occasionally now but usually completely unconnected to the dizziness.
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Same here! And the irony of the situation is that when I do get “classic” migraine symptoms, that’s the time when I’m NOT feeling dizziness/lightheaded. Go figure!
That’s great that you respond so well to preventatives! Especially cos it seems so many people on this board have a hard time finding the right med. Can I ask which medicine you are on? My neuro-oto wants me off the migraine preventative but my GP still wants me to stay on… I’m definitely staying on! Seems like my neuro-oto dismissed migraine as a problem, when we ALL know that migraine is very much related to the vestibular system. I don’t think it’s any coincidence that all these problems soon began after I started getting classic migraine headaches
Hi there, I was given that dx before. Thru an ECOG test. However, 2 other doc’s one ENT and one Oto/Neurot said “no you dont”.
They didn’t test, but look at my hearing test and told me not with the results of your hearing test.
I saw a new doc yesterday, and he is pretty iffy about the hydrops, so wants me to do another ECOG, which is scheduled for tomorrow.
The ECOG tests themselves are pretty inaccurate and most docs dont do them. He wants to redo it, to see if it tests positive again, as most ECOG’s will
show a false positive.
I was diagnosed with endolymphatic hydrops after an ECOG test, I showed about 60% pressure or something if I remember. I could feel the pressure in my ear when they did the test and had a bad vertigo attack whilst they did it, so something was up.
Later, when I went to a migraine specialist they diagnosed vestibular migraine, when I asked about the vertigo attack after the ECOG, she said it could have been where my migraine was :? not sure I understand that bit. I have had vertigo attacks on their own, or the day before a migraine or a day or two after a migraine. When I have a bad vertigo attack there is usually no sign of any head pain, I have had 3 different diuretics in the past, each one gave me permanent 24 hr migraine for days while I was on it, which stopped immediately I stopped the diuretic.
As most otologists would say, anytime you are diagnosed with PLF, get a second opinion just to be safe. This is not to say that the doctor diagnosing PLF is not qualified, but its just a quick reality check because it can prevent a patient from going down the wrong path.
I would suggest asking your GP to see a neurologist about this, and talk to the neuro about MAV.
I would think all your symptoms are caused by MAV and not SELH. I would only suspect SELH if you truly do have a fistula. I prefer to keep things simple and only accept a more complicated explanation after failed efforts to treat the most likely situation.
Must echo Hannah and others. Your neuro-oto is clearly far behind the times if he can say that it’s not MAV because you don’t get a headache.
MAV as “flavor of the week” is also a very wrong way of thinking.
This sounds like one of those doctors who’s very set in his thinking and does not bother to update his knowledge or question his opinions in light of new or different facts.
Who did he get rave reviews from? You can have an ENT who’s a great surgeon, wonderful if you need an acoustic neuroma cut out, but who is not skilled at diagnosing something you can’t see on a scan or that he didn’t learn about in medical school way back when.
You have already heard about the controversy over spontaneous PLF.
And the fact that exertion makes you worse does NOT necessarily point strongly to PLF unless, say, you lift something or have some similar pressure change in your head and all of a sudden you’re very dizzy. MANY “flavors” of dizziness get worse with exertion, in fact maybe the majority, I’d guess.
Good for you for not blindly going along with what your doctor says. I think he’s ready for retirement.
As to a relation between SEH and MAV, I have to plead ignorance and let others address this.
I agree with Nancy. I was suspected of having PLF because I got dizzy and had vertigo from straining. But the PLF surgery didnt help me, and Im now 100% sure I have MAV.
Darren,
That’s so crazy that you had to go through the surgery only to find out it was MAV from the get-go. I can only imagine the frustration you must feel. Has your SEH from the surgery been getting any better?
Nancy,
When I bend down, I don’t get dizzy (sometimes a little lightheaded… But it could be from the Propranolol cos it lowers my BP) but I do notice I get this strange wind sound in both my ears. Like I am outside on a windy day. When I asked my neuro-oto about this he said that people with these issues often complain about the wind sound but he has no idea what it’s from. From what I read online, wind sounds could be tinnitus. SO I guess increased tinnitus when I bend down?
Migraine is much more common than Menieres. However those that have Menieres or Hydrops , it is very coomon to have MAV. I have both. I see a MAV specialist and Menieres. My Headache specialist said it is possible to have hearing loss with Migraine but not common.
Hi Suki, I don’t know about the “wind sound” when you bend over; it does sound like maybe some kind of pressure issue. I wonder if it could be related to the Eustachian tube somehow? But that’s just a wild guess on my part. I really don’t know. I would try to find another neurotologist. And mention that to him/her, along with your other symptoms.
I do know there’s something called somatic tinnitus, which is when muscle tension or certain movements cause a temporary change in tinnitus. For example, moving or tensing your jaw might cause tinnitus sounds to change. Even if you don’t normally have tinnitus, perhaps something like that is going on. But again, that’s a wild guess.
Darren,
That’s so crazy that you had to go through the surgery only to find out it was MAV from the get-go. I can only imagine the frustration you must feel. Has your SEH from the surgery been getting any better?
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I believe the increase in symptoms I felt after surgery was due to MAV and not SEH since I never had PLF. I did have some pretty bad headaches after surgery, I suspected they were migraine because they were pulsing headaches with nausea.
Just as a note: My neurotologist said that propranolol is not very effective for MAV. She is not a fan of it. I would recommend Nortriptyline or Verapamil.
Darren,
it’s just crazy though cos your symptoms seemed SO MUCH like plf (after picking up a box etc.) MAV can be such a bitch! I am titrating off of the propranolol right now. Tried going cold turkey and my BP shot up a lot. Sucks cos all my MAV symptoms that it did keep at bay are back. I can’t wait to be on a drug that works. Will definitely mention the Nori & Verapamil to my doctor. Thanks!
Thats why my Neurotologist and I decided to do surgery, it was a pretty likely case. But the presentation of MAV is variable, I realized how it can present with any combination of symptoms possible.
I quit 80mg Propranolol cold turkey, but I could tell my body didnt really like that. So I titrated down to 40mg for a week before quitting completely. The fact that the Prop did relieve some symptoms, that are now coming back, is proof that you have MAV. I dont believe that PLF fits in your equation, what are the chances of having PLF and MAV together at the same time, I wouldnt buy that at all. I wish you good luck with your next trial.
Thank you! I’m hoping you finally have some relief now that you’ve gotten a proper diagnosis. I only ever went up to 40mg on the propranolol because anything above that was giving me sleep issues. Hopefully the next drug will do the trick!
ugh i know how frustrating that feels, hearing a “guaranteed diagnosis” from the neuro-otologist, as i’m going through the same struggle. I’ve had 4 different diagnoses from different doctors in the last year and I doubt any of them were correct (BPPV, cervicogenic, anxiety, and my most recent was MDDS which came from the neuro-oto). I did not bring up MAV to the neuro-oto, but I noticed during the “questionnaire,” he asked me had i ever experienced migraines. I said no and he moved right on. Based on your previous posts, I would vote for MAV. What kind of diet/exercise plan are you on? Also, when my stuff was getting started, I was on Lisinopril-HCTZ and Norvasc for high blood pressure. Mind you, back then, my vestib issues were mild and episodic. Seems like symptoms got worse after stopping the Norvasc, which is a calcium channel blocker. I THINK i read some MAV-ers take calcium channel blockers, so who knows, i may have been treating something i didn’t realize I had! Or just dumb coincidence. Just a thought
Nancy,
When I bend down, I don’t get dizzy (sometimes a little lightheaded… But it could be from the Propranolol cos it lowers my BP) but I do notice I get this strange wind sound in both my ears. Like I am outside on a windy day. When I asked my neuro-oto about this he said that people with these issues often complain about the wind sound but he has no idea what it’s from. From what I read online, wind sounds could be tinnitus. SO I guess increased tinnitus when I bend down?
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I also have the wind-thing. When I bend over. ANd if I lay in bed and raises my head in a certain way. What “these issues” did the neuro-oto reffer to?
