The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Attacks or a constant feeling


#21

Saccaluci,

Here is my story and my dizziness was because of my left arm and neck movements. :SSCD (Superior semicircular Canal Dehiscence) and Perilymph fistula are ENT issues. Subclavian Steal Syndrome, Vertebral insuffiency Syndrome and Thoracic Outlet Syndrome (including elongated C7 transverse process) are vascular issue and can cause dizzinss along with other conditions. Once your heart and brain has no issues, next step for the doctor is to go for your ears. Carotid doppler is not reliable in certain cases. Many of them miss the following as stated in this journal.
Here is another cause for dizziness http://www.bmj.com/.../neglected-cause-dizziness-and-neck… I am not sure that all of you know that any patient who complaints of dizziness is expected to have a cervical x-ray to rule out cervical rib (including an elongated cervical transverse process) in ENT books before starting all these horrible drugs. I didn’t at the early stages and when I did, x-ray was read wrong and they missed elongated transverse process. I am going through physio and a simple physio could have saved my nursing licence and 23 years of dizziness. Here is the link for that physio. If this physio lessen your symptom you know the next step. It will not hurt anyway

http://www.uhn.ca/.../Exercises_for_Thoracic_Outlet… ( it is from a hospital website)

:peach:My humble request to all of you who are not feeling better is to have that plain x-ray and an x-ray on anterior posterior view. Goodluck!


#22

Sounds like my vibration in my left ear. That is irritation of your vestibular nerve. Please see my posts on today about Thoracic outlet syndrome. Try not using your arms for a week (avoid car rides too) and see if you are better. Don’t lie down on the side which increases your symptoms too. If you feel better, you know it could be something to do with your vertebral artery. Good Luck!


#23

I thought Silicone plug was helping, but yes it did actually as I was lifting my arm up to push it in every other minute and that arm lift was easing the pressure of my subclavian artery and it eased my symptoms, SSCD (Superior semicircular Canal Dehiscence) and Perilymph fistula are ENT issues. Subclavian Steal Syndrome, Vertebral insuffiency Syndrome and Thoracic Outlet Syndrome (including elongated C7 transverse process) are vascular issue and can cause dizzinss along with other conditions. Once your heart and brain has no issues, next step for the doctor is to go for your ears. Carotid doppler is not reliable in certain cases. Many of them miss the following as stated in this journal.
http://www.bmj.com/rapid-response/2011/11/01/neglected-cause-dizziness-and-neck-pain I am not sure that all of you know that any patient who complaints of dizziness is expected to have a cervical x-ray to rule out cervical rib (including an elongated cervical transverse process) in ENT books before starting all these horrible drugs. I didn’t at the early stages and when I did, x-ray was read wrong and they missed elongated transverse process. I am going through physio and a simple physio could have saved my nursing licence and 23 years of dizziness. Here s the link for that physio. It will not hurt anyway

http://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Exercises_for_Thoracic_Outlet_Syndrome.pdf ( it is from a hospital website)

:peach:My humble request to all of you who are not feeling better is to have that plain x-ray and an x-ray on anterior posterior view. Goodluck!


#24

Please see my post on TOS. My symptoms were 24/7.


#25

Gracy thanks so much for your suggestion. I had an ear injury 5 months before MAV started. My current oto-neuro, a surgeon, believes my ear injury caused a fistula which started a chronic leak of perilymph and this lead to me getting ‘secondary hydrops’ which must be ‘MAV’ as the symptoms are exactly the same. I have had a fluid sensation in my bad ear nearly every morning since the injury. I’m convinced a lot of people on this board are suffering from a degree of hydrops. The pressure of the hydrops causes all the weird sensations. This can be picked up with tests but most people don’t seem to be having the appropriate ones. Doesn’t make a lot of difference to the treatment (diet and meds are mostly same) except it does mean people aren’t being offered diuretics which may help rectify the root cause not just paper over the cracks. There is even emerging scientific proof on this in a paper I shared. Silly situation.


#26

I agree

I think it would be a good policy on this site not to try to diagnose (or undiagnose) other people’s conditions, not only because we’re not qualified to, nor because we haven’t ever seen the patient or any of the results, but also because it’s incredibly distressing (if not dangerous) to be told your diagnosis is wrong unless there is evidence and certainty.


#27

The OP came to us with questions, do you think she should have been ignored?

Of course no-one here should be giving a definitive diagnosis, and you are right to highlight that, but I think its good to point people in directions they can discuss with their doctor?

Also, some people are here searching for answers they feel they are not getting from doctors. Or because they have conflicting information from them. If all doctors and medical science were perfect and they had full trust, they wouldn’t need to come here at all, right?

Of course, ultimately, people need to get their diagnosis from a qualified person, but sometimes its good to encourage people to get a another opinion. I had a total of 4 and I’m VERY GLAD I did, because together with my own research I learnt a lot and ultimately have a much greater understanding about what is going on in my body.

But I do think ‘medicine’ has a case to answer in ENT/Oto neuro right now. It definitely does not all ‘add up’. And I believe this is dangerous too!

I am the sort of person, and I’m sure i’m not alone here, that needs to understand what is going wrong with them. Being told something that doesn’t make sense DEFINITELY makes me want to discuss this with others to improve my understanding and perhaps seek other avenues. If people want to come here to improve their understanding that I believe is a good thing. What better group of people to discuss it with than fellow sufferers of the same or similar conditions that have walked at least part of the road before?

I was VERY unhappy with the justification for my diagnosis of MAV. When asked why I had developed it, I was told it might be a DNA mutation, which was just ridiculous (I’d suffered an ear injury only 5 months before to the ear with the problems! Coincidence? I think NOT!). It was only when I subsequently got other opinions that I started to notice the uncanny similarity between MAV and SEH and the penny started to drop. Some of it, quite frankly, started to seem a bit fishy, to say the least, which is when my trust level started to drop!

Another good example of this is being told its all down to ‘anxiety’. I think its good that some people come to us here and complain that they are not happy about this. I think its only right to offer them another opinion and suggest the seek another professional opinion.

But like I said, no-one is challenging the diagnosis of ‘MAV’, but its important to point out to people that the root cause has not yet been confirmed by science and migraine may not be the root cause, in fact recent evidence suggests it is indeed an inner ear issue which part of the medical community has been saying all along (and you have to ask why you are going to an OTO neurologist if its only about the brain!!)

There are a lot of people on here that are too intelligent and too well read to be fobbed off by some of the doctors who do not explain the condition to the satisfaction of the patient. People deserve to know there are a lot of grey areas and be aware there is much we don’t know and don’t know for sure yet.

Of course I have sympathy with the doctors too, who have to go with less than perfect microscope into the body (especially in the case of ENT with the inner ear locked behind a thick wall of bone, deep in the head) and have to conform to professional best practice which can limit their freedom of discussion. I’ve even noticed a doctor cagey to challenge the status quo even though you could tell which side of the fence they sat, probably because they didn’t want to overstep professionally (which on balance is how it should be, but we should also be aware of this as patients)

Anyway, with all respect, I think this is a very good place to discuss all angles, quackery aside, of the condition so we should have reasonable, respectful freedom of speech on the matter. If we disagree on things, that’s fine too.

But you are also correct, for sure, that a professional diagnosis is ultimately what people should seek and they should do so until they are satisfied.


#28

I don’t think it’s ever a pure inner-ear problem because the inner ear is wired so directly into the vestibular processing of the brain (which takes up 30% of its capacity, 60% if you include all visual processing), so drugs which target the brain can surely help even if there is a root cause of inner ear dysfunction?


#29

@turnitaround has hit the nail on the head. I’m on several forums and after reading the variety of drugs and treatments that have been tried and prescribed, it really seems like a big crap shoot.

With most illnesses there’s a defined diagnosis and treatment. For example, if you have strep throat caused by the Streptococcus bacteria, you take a drug such as amoxicillin, it kills the bacteria, and you’re cured. End of story.

I’ve read about vestibular disorders for 22 years and I’m still amazed at how little is known. It is not unusual in the forums for the participants to have seen 5 to 10 specialists, over a number of years, without receiving a definitive diagnosis (or several conflicting diagnoses). How many other medical problems have your friends or family had where they went to 10 different doctors for the same problem? Even the people I know who had a serious form of cancer didn’t go to 10 different oncologists.

The flowcharts for treating vestibular migraine involve a lot of trial and error. Try this drug, if it doesn’t work try the next drug, if it doesn’t work try the next drug. Still doesn’t work? Try a combination of two of the above drugs. Still doesn’t work? Try a combination of three drugs. And so on…

Just read the posts in this forum that describe the drugs people are taking. They’re all over the place.

Even most types of cancer seem to have much more of a tried-and-true treatment regimen than the dizzy disorders.

Doctors will admit that vestibular disorders are difficult. I have a friend who is a general ENT who told me that he has instructed his staff to only schedule two “dizzy” patients per workday, because it’s so frustrating for HIM (the doctor!) that that is all he can handle. When I asked another friend, an internist, who she refers her “dizzy” patients to see, her facial expression changed to a look of pity, she hesitated for a moment and then she said, “Oh, dear… dizzy disorders are really difficult to diagnose.”

While we definitely should not be trying to diagnose anyone, I think it really helps a member to see suggestions and ideas from the other participants, from their own experience, when the member is wondering whether their diagnosis is correct. It’s then up to the member to do the research, read, and discuss it with his or her doctor.


#30

Hehehehehe :joy::sweat_smile:

You have to laugh sometimes. Or you’d spend all your time crying :slight_smile:


#31

Instead of splitting hairs over the ear or the brain causing the migraine, you can let the diagnosis run the course.

If the tests VNG, VEMP, Audriogram, EcoG picked up any abnormality then the ear is the origin and migraine is a co-morbidity. Treat the underlying ear condition if you can and take the migraine meds for symptom management. In my case i have an abnormal VEMP and fluctuating hearing loss high frequency confirmed by audiogram. Suspected hydrops so taking betahistine in addition to the amitriptyline.

If all test prove normal then settle for the vestibular migraine diagnosis and take the meds.

I think a simple meclizine dose can confirm if you have an ear problem or not. If meclizine helps you have something going on in your ear. Meclizine will not touch a migraine.


#32

I think arguing this point is perhaps a bit pointless perhaps because ultimately we just have to wait for the science to confirm either way once it is able to, but I know where my chips are on the table.

It would be interesting to say the least to know how many people diagnosed with MAV have had VEMP tests and if they were normal. I wonder if many sufferers have had this test? Subject for another objective poll, perhaps.

Did you also have an ECOG? (I didn’t)


#33

Hmm. I will be sure to ask the new specialist that I am seeing in January about this.

The specialist I saw in 2016 did all of the tests and told me that “you don’t have a vestibular (ear) problem. It must be vestibular migraine.” I asked him what I should do and he said because my attacks are infrequent, to just keep doing what I am doing which is to take meclizine as needed.

It’s odd that he would tell me to take meclizine if it doesn’t do any good for dizziness caused by migraine.


#34

This is what my neuro told me as well. I also had an abnormal VEMP and was diagnosed with Unilateral Vestibular Hypofunction co-morbid with migraine. He basically said that I have inner ear damage of some sort and the migraines are not letting my brain properly compensate for the busted signals coming from my ear


#35

I had full balance testing including the VEMP test and Ecog, which was normal. Three ENTs all told me there is nothing wrong with my ears or my balance. 1 ENT suggested this was simply vestibulopathy or migraine-associated vertigo.

I also had an MRI of the brain and auditory canals and that was normal (would an MRI that looks at the auditory canal see hydrops?) I also had a CT Scan of the head, which was normal.

My symptoms all started with BPPV, which was confirmed doing the Epley Maneuver. I self-confirmed though. I had the spinning for 5-6 seconds which stopped, then I turned over, etc. Then, from there, I developed a chronic feeling of imbalance and still got positional episodes that were NOT consistent with BPPV. The ENT’s could not produce any nystagmus even though I would get a dizzy positional sensation. Mind you, I was also not spinning, just more of a dizzy-rush sensation. Even now, if I turn too fast or look up too fast, I get a mild sense of disorientation. At it’s worst, it causes me a great deal of anxiety.

Looking at the computer really brings on the symptoms. I feel like the screen and letters are moving.

I also have:

periodic aural fullness
random popping and clicking sensations in left ear (which could be attributed to the tensor tympani muscle going into spasm as one ENT suggested)
Hyperacusis. (It doesn’t hurt but certain tones like children yelling or speaking to someone on speakerphone cause my ears and brain to feel like they are vibrating)
Tinnitus (which is mild and has gone away now, was worse after I went for a chiropractic adjustment)
Headaches/migraines which come from within my left ear (they have also stopped now and come on more in line with menstrual cycle)
Anxiety (this seems to have run rampant since this all started)

Before this all started, even before the BPPV, I was getting headaches in my left ear 2-3x a week. I knew that although I had suffered from migraines in the past, this was not like me. Then I developed BPPV which was in my right ear, which doesn’t make any sense since if migraine causes vasospasms in the inner ear, wouldn’t my left ear have developed the BPPV?

My hearing has always been normal and I don’t have spinning episodes, except for when I had BPPV. Just a sense of imbalance with dizzy spells exasperated with a change in head position. My neck also gets really tight and one audiologist said perhaps it was cervical?

I also have TMJ which I find correlates to how bad my tinnitus gets.

I have an appointment with Timothy Hain next week so looking forward to his analysis.


#36

Also, I have never taken Meclizine. Oh, and one day I was listening to loud music with my children (before this started) and my ears rang really loudly for about 2 minutes. I thought that was unusual and was wondering if that is a migraine symptom.


#37

@Sacolucci (Sarah), you’re going to see Dr. Hain? Wow. Please let us know how it goes. I called his office about seeing him and his first available was in February. I filled out his questionnaire and he reviewed it and said that I am a candidate to be seen by him. But that’s probably the most unpredictable time of the year for traveling to Chicago, with a possibility of snowstorms. He said that if I didn’t want to travel that far, he would provide me with the names of some specialists that he recommends closer to where I live (Florida). There were four names on his list. I researched them and decided to try one of them first. I’m seeing him that guy in mid-January. I’m hoping he will work out but, if not, then I could try to see Dr. Hain in the spring or summer.


#38

I had my appointment booked in November. It’s a better wait time than seeing anyone here. I’m in Toronto. To see a specialist here, they are booking in March and he’s the best! I have to pay to see him but I want an opinion from an expert in dizziness.


#39

Yes, he’s the best. I’ve been aware of him for 20 years. My husband was the one who recently said, “Why don’t you just go see that guy in Chicago?” The guy I’m seeing in January looks pretty awesome, too.


#40

Manatee, I am wondering, do you know if secondary hydrops comes with hearing loss?