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Can't get any doctors to agree on a diagnosis...any ideas?

I’m in the midst of a 6-month dizzy spell. It’s not vertigo, it’s more 24/7 brain fog. I had some unsteadiness for a while but after balance therapy it’s now only like I’m a little drunk or have a head cold but without all the other symptoms. Like I’m not fully in my body. This is my third experience with this. My first diagnosis was VM, but I’ve gotten different diagnoses from seemingly good doctors, not sure who to trust. Looking to see if anyone here has similar experiences who can help.

It begins the same every time. If I get bad cold or sinus infection that lasts a couple weeks and the congestion gets into my ear (i.e. it gets blocked up), once everything heals, I’m left with an odd lightheadedness that lasts for months. I don’t get vertigo, I never fall or throw up, I don’t have fullness…I just get brain fog, fatigue and light nausea. I’ve had tinnitis 24/7 since childhood due to ear drum ruptures and notice slight changes here and there but nothing crazy. My hearing is generally very good, it doesn’t really change, and on the lowest frequency I have a tiny bit of loss but ENTs didn’t seem concerned. This has happened in 2010, 2015 and 2016.

The first time I got stick it lasted 2 months and went away on its own. The second time it lasted a little longer and went away around the time I was diagnosed by a neurologist with Vestibular Migraines and treated with Topamax. I’m not sure if the medication helped or if it just burnt out quickly after. I never had bad headaches, occasionally tingling. I stayed on the drug 8 months, went off for a couple months, then got a bad infection again last December. Went back on Topamax and didn’t help this time.

I saw a slew of docs, got a ton of tests (MRI/CAT/Balance) and none of them agreed on anything. A neurologist said Mal de Barquement (it’s the only one I’m sure it’s not and two other neurologists agreed).

A respected but aging Neurotologist diagnosed Secondary Hydrops (not full Meniere’s) and suggested I lay off sodium.
The dizziness expert at the House Clinic in Los Angeles (also respected) diagnosed PPPD (peristant postural perceptual dizziness, which used to be CSD. He thinks I have an ear issue that gets inflamed when I’m ill and that it sets my brain off. I do have an issue with the ear that keeps getting infected, it plugs up on plane flights, it gets water inside very easily, I’ve had swimmer’s ear in it, etc. He aslo mentioned he didn’t think non-Meniere’s Hydrops was a thing and feels strongly I don’t have Meniere’s.

I did a sodium diet and vestibular migraine diet (no MSG, caffeine, etc) at the same time and felt better after a month but not fully healed. One of them helped though it seems. I started cheating on the weekends after and have been up and down since, but still generally improving. I recently went on microdoses of Effexor (like literally opening caps and counting pellets, 2 then 4 then 8 then 16) and felt slightly more relief from that. I did balance therapy and they mostly worked on my neck, which was incredibly stiff. I am no longer unsteady on my feet but can’t kick the brain fog part.

I do some food writing and focus on Italian food so the sodium thing is a huge fear. I have been strict during the week on sodium and more lenient on the weekends, and sometimes I get brain fog a couple days later. Sometimes. I am still off caffeine and try to avoid MSG because it seems like that could be a factor. But it could also be that I’m doing a lot more activity on the weekends and overloading my brain as my Balance PT guy suggests.

I really don’t know. I am going to try the sodium diet again to see if I could get all the way better, but would love to know if I’m missing anything. If you got all the way down here, thanks for reading.

I have a friend who once had sinus issues that became dizzy. The dizziness and tinnitus went away once the sinus issue was resolved via some surgery. But it did hang around a few months. I have wondered to this day if she had SH too.

If you think about the ear as a pressurised plumbing system that tries to maintain a constant pressure but sometimes gets a leak and has to increase the pressure but at some point the leak heals and the pressure remains higher for a while til it settles down. The over pressure can cause tinnitus and dizziness etc. That’s Secondary Hydrops. I assume that so long as the pressure is within a limit your hearing will not be affected much long term. I suspect that is how we’ve evolved.

MAV (VM) is ‘all the rage’ as a diagnosis and I think it’s simply medical dogma. In my view migraine is a symptom and a knock on effect I believe from pressure on the neurons and imbalance of ear pressure between the two ears which causes the brains learning algorithm to be pushed beyond its normal envelope resulting in a migraine and all that that entails. You may get other psychological symptoms too like the rocking hallucination as the brain struggles to understand the signal mismatch against its learned expectation. Not everyone with ear trouble may get such an extreme reaction. Some peoples brains may cope better with the stress.

I’m convinced I have a fistula and one that regular heals but again I have this pressure issue. I get all the same symptoms as ‘MAV’. I believe the pressure goes up high enough to breach the weak point and at this point I get vertigo. In your case perhaps the pressure is trapped until it calms down. But in any case I don’t think vertigo is to be feared : it may be uncomfortable and inconvenient but I strongly suspect it’s there to reduce pressure and part of the reason we have a eustachian tube that goes into the throat is to drain this over pressure. Obviously it can be dangerous to get this when driving but doesn’t it strike you as interesting that most people seem to get it when lying down? Evolution at work again?

I have been diagnosed variously with MAV, possibly a degree of Hydrops and with a fistula that has caused SH. I’m going with the latter. However the symptom management is exactly as prescribed by the MAV regime.

I’ve flirted with a low salt diet. I think it may help a bit but not enough. I suspect a ‘diuretic diet’ may be more helpful. Interestingly I’ve recently travelled to China. The food is FULL of salt and I was worried but my symptoms have not escalated. If anything they have improved significantly. It’s very hot here which means you tend to sweat. You also eat a lot of vegetables and fruit. Many of these are natures diuretics.

So I’m going suggest you try upping diuretic vegetables and fruit (google them, but e.g. Celery, water melon) and perhaps consider lots of exercise and or nice holiday somewhere warm. These will all help reduce salt uptake. I don’t think low salt helps really : you still need it to be healthy. Such a regime could only make you healthier anyway! :slight_smile:

Perhaps also you can find a specialist who deals with sinus issues to determine if something can be done to permanently fix it? They say once you resolve the root cause SH will go away …

MAV meds may help significantly in meantime. Talk to an oto-neuro about the residual brain fog. I’ve had that. It’s definitely a migraine element.

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Thanks so much for the detailed response. Since you seem really knowledgeable, I wanted to ask you an ear pressure question.

My ear that seems to have all the trouble (infections, worse tinnitus, gets plugged when I’m sick) has generally been problematic. I got swimmer’s ear from a lake when i was a kid, I get water from pools in it sometimes, etc. Additionally, it won’t unplug when I land after plane rides. I have to forcibly pinch my nose and blow them out…and sometimes it still won’t unplug. This last time I had a plane ride before I got sick and couldn’t unplug it even though I tried very hard (maybe too hard?). When the other ear unplugged, I got a dizzy sensation that spun me for a couple seconds then just cooled down until I was off-balance. I think the ear stayed plugged as I got sick (I was feeling an infection or virus on the plane) and by the time all the congestion went away, I was in the middle of the current 6-month run.

Can you damage your ear by popping it?

If you have SH and/or a fistula (they are known to come in a pair!), popping it is a very bad idea I’d imagine (Dr. Hain advises against it if you have the latter). Better to let nature take its course, perhaps go for a run every other morning: it won’t remain plugged forever. For flying take a decongestant (like sudafed) 30 minutes before landing. If you pop it you may make any tear worse and that may explain the increase in symptoms you experienced.

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GoodSense decongestant US Sudafed UK “Ear Planes”
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I think you can have MAV and also have ear damage. I think that is what has happened in my case.
For 15 years I was “misdiagnosed” with Menieres and then when my hearing didn’t significantly deteriorate in one ear I was told I had (endolymphatic) hypdrops.I think I had ear damage (probably from an incident when I was a child and then very bad labyrinthitis when pregnant). My current doctor thinks it was a bit of a red herring all those years - so I was on Serc a lot (didn’t work) and a low salt diet and diuretic.

I developed headaches about 9 years ago and then got a MAV diagnosis. The ENT said most Menieres disagnoses from the 1990’s were actually MAV - he gave me a migraine diet sheet and sent me on my way (I bought “how to heal your headcahe” and did that diet) but as usual my symptoms died down after a while to a manageable/tolerable level and the headaches went.

I got some migraine meds when I developed chronic migraine 6 years ago. The migraine “specialist” discharged me as the headches were abating on Amitryptiline although I told her I was getting ever more dizzy again - she said that you could only get dizzy/ringing ears/feel spacey etc as an aura in the lead up to a migraine headache and that having these symptoms at other times was “something else”. I knew she was wrong but she seemed to not have a clue about MAV. I think a lot of doctors aren’t aware of how to treat it.

I recently saw one of the top UK specialists in balance disorders - I have what he calls “migraine variant balance disorder” and he seems to totally understand it.He sees hundreds of people with the variety of symptoms we can get. The problem is most doctors don’t know how to treat itll or for how long and the doses needed. My GP thinks it’s mostly psychological. My current specialist says you just need to start on meds and then try and find the one or combo that works for you. Your brainstem is irritated as the ears, eyes and body muscles are not working in sync to give your brain the right information. It needs a good rest and the right (migraine preventative) meds will do that.

I have left sided ear deficits and probably damage but he thinks that when my brain is rested enough it can compensate for that too. My GP says “it doesn’t matter what diagnosis you have it is just a collection of words to describe a complex set of symptoms we know little about.” However, I disagree - the Menieres/hydrops diagnosis meant I was treated for years with the wrong drugs - serc/stemetil/diuretics/low salt to no avail and then told my body had compensated as much as possible and to just live with it. Actually I needed to properly trial migraine preventatives and take them at higher doses and for longer than the Migraine clinic prescribed. the path I have just started on. The specialist I now see is a Neuro - otologist. perhaps you should search for a balance specialist in your area and/or start working through the meds. Topomax didn’t work this time but perhaps something else will. I was told it may take 6 weeks+ to see an effect after reaching 150mg+ of pregablin and 12-16 weeks on 1.5mg+ of pizotifen.

On Italian food - that is the food I eat the most but I don’t eat Parmesan,pecorino etc or even ricotta, porcini, or aged balsamic vinegar (I’m vegetarian so no meats either) anymore as I find they aggravate my symptoms. I need to be strict with “sleep hygiene” - no late nights and try to live a very boring and measured life (no alcohol, no UNDUE exercise and rushing around to “catch up” when I’m feeling okay).

Good luck - think about migraine meds.

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Yep, the treatment is evolving in a good way.

Serc is not proven to work, but some people swear by it. Diuretics are not proven to work. I’m not sure low salt works for Secondary Hydrops either (although I have felt funny after eating crisps or salty popcorn for example - not bad enough to bring on an attack though).

Bear in mind Secondary Hydrops and Menieres are two different things, possibly with different drivers/causes.

I suspect Secondary Hydrops only improves if you have addressed the underlying driver.

The rest is just helping the brain to compensate for the instability caused.

I have a diagnosis of Secondary Hydrops and the migraine meds (specifically Amitriptyline) helped tremendously. I also have had strong indications the Hydrops itself has reduced in intensity.