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Just symptoms, no diagnosis yet


#1

Hello, everyone. I’ve found your forum from the Meniere’s forum - been reading both to give me some sort of direction for where to go for diagnosis/treatment.

Here are some symptoms:

  • perpetual headache
  • ear pain in right side
  • ear fullness/pressure in right side
  • head fullness/pressure all over
  • dull hearing; feels like possible loss, with some fluctuation
  • difficulty concentrating and grasping info
  • difficulty focusing on print when reading, both with books and (even more) with computer
  • very short, mild and sudden episodes of dizziness/room slanting or spinning (sort of)
  • buzzing’ in my head occasionally
  • sensitive scalp
  • perpetual feeling of impending dizziness - have to turn carefully so as not to bring actual dizziness
  • occasional sinus pain with no subsequent sinus illness
  • unrestful sleep
  • stiff and painful neck and upper back
  • tiredness
  • ‘bugged out’ feeling in eyes and head when at computer screen
  • sensitivity to light
  • joint pain

And probably a few things I missed :wink:. Oh, yes! Here’s one - if I look down at steps when going up them, I feel unsteady and like I’m going to miss the step.

Anyway, I’m looking to get an appointment at the Balance Center in Fort Wayne (Boismier’s).


#2

Try a neurologist or better a neuro-otologist. Read our wikis. You sound like one of us. Half of people presenting with balance issues have some sort of migraine variant. The others have a variety of issues, many related to the ears. A neurologist can point you in the right direction, particularly one who’s dealt with migraine variant balance disorder. Also, check out the vestibular migraine page on VEDA’s website.

Helen (@Onandon03), can you throw up that PDF link from the other day? Thanks.

Welcome!


#3

Welcome. Sounds like a MAV condition alright. Get diagnosed by a professional specialist as @flutters advises. It seems this is your plan.

Good luck and keep us posted on your visit.

btw I edited your post to fix the bullet points. You can enter a bullet point with a ‘hyphen space’ at the beginning of a line.


#4

Hi and welcome

This is the document to which @flutters is referring. Helen


#5

Thanks to all. I downloaded the file and will read it later.


#7

I have a consultation scheduled with a doctor from the ENT’s office for November 7. This will determine if they think I should be referred to Tom Boismier’s Balance Center.


#8

My ENT was the first one to point me to the neurologist.


#9

Update:

I had my appointment today with Dr. Rao at ENT Associates of Fort Wayne. Hearing in both ears was normal. No pressure behind ear drums. He had me schedule balance testing at The Balance Center, which will be tomorrow - just happened to have an opening then; otherwise woud’ve been in late November or mid December. Follow up appointment is November 28.

He indicated that, in general, there are possible inner ear/balance issues related to migraine. He didn’t say that I was in that category . . . yet. If needed, he’ll refer me to a neuroligist. It sounded like the only recommended treatment (from him) for balance issues was therapy (VRT, I’m assuming).

Overall, I am underimpressed with the visit. I arrived late because I had trouble finding the office within a labyrinth of hospital hallways. Then the rooms were upstairs and smallish, and I tend to be claustrophic (anyone else have this?). I felt pressured to list my symptoms quickly (which meant that my brain froze and I couldn’t think properly). The doctor interrupted several times, which made me nervous. I think he was trying to pay attention but had limited time with me. He did take the time to read the one-page list of symptoms and health timeline which I’d prepared in advance. The support staff were all friendly and competent.

I’ll update after my balance test.


#10

Update:

I had my balance testing. I don’t know the names of the tests, but it took 2.5 hours to complete.

A technician performed the tests, and I found out that Tom Boismier was remotely monitoring the testing the entire time. He not only observes all the testing, but he reviews the results and gives recommendations to the ENT doctors who meet with the patients. I will get my results on November 28.

Before I left they gave me papers to read: a few articles by Dr. Hain, some Veda articles by those who have headaches and/or dizziness, a paper on VRT, etc. I also have a headache/head pressure diary to fill out.


#11

If they gave you articles written by Dr. Hain, that’s a really good sign that they know what they’re doing. It sounds like you found a good facility and I hope they’re able to provide you with a plan of attack.


#12

Update from 11/28:

Dr. Rao spent more time with me and was more personable than during the initial ENT visit. I suspected that he truly wanted to help but had been pressed for time (initially), and the follow up visit confirmed this.

My balance test results did not show any inner ear problems, so I am being referred to a neurologist to deal with the headaches. I am awaiting a call from Dr. Rao’s phone nurse to talk to me about scheduling. I have no clue who the neuro will be. Dr. R advised me to go to the neuro and focus on the headache, as many neuros don’t believe there’s a connection between headache and dizziness, and bringing up dizziness as a main focus from the start would quite possibly turn them off from wanting to help me. I appreciated his honesty. I do believe that my headaches and dizziness are related, but I am content to deal with one and see how it goes with the other. Currently both have been better for a few weeks.


#13

I think you should tell the neurologist about both (headaches and dizziness). You could even print out this thread (or at least your first post, where you list your symptoms) so that he has that for his records. Then you can say that you want to focus on the headaches first.

You never know what the neurologist might think or what his background might be. At the first visit with my neurologist, he told me that his wife has vestibular migraine. I was relieved that he had at least heard of the condition!


#14

Quite right! I plan to bring up both, because they are related, but I will initially lean toward headache control, until I have a better idea of where this doctor is coming from.


#15

Yeah, depends on the Neuro. My first Neuro was turned off by it and basically said I was Neurologically fine My second Neuro wasn’t turned off by it but was more interested in getting the headaches under control first to see if it had an effect on the dizziness. And yes, so far this relationship (headache -> dizziness) seems to hold true for me. Slowly, as my headaches (or rather headpressure) go down, so does the dizziness.

Anyways, seems like you are getting good progress towards a treatment plan, nice work!


#16

The neuro-otologist who first diagnosed me with MAV shocked me. I’d had it 12 and more years without a clue it might be Migraine variant. I don’t get headaches. At the time of diagnosis he wasn’t completely sure that was what I had but what he was completely sure of was ‘Migraine causes vertigo’, and he made his diagnosis based on the type of vertigo I was experiencing. He was top guy at largest teaching hospital in my area so presumably quite knowledgeable. Unfortunately for me he wouldn’t take up management of my case because migraine is outside his field of interest. Bit too prima donna like these experts for me!

From subsequent developments I can only say, as a sufferer whatever happens to be root cause, with MAV, headache/dizziness - it’s all the same condition. I have no argument with that at all. Helen


#17

Well, just to balance this discussion, there is certainly an association between migraines and vertigo (hence “MAV”) because they are often comorbid, but I don’t believe (with others) that vertigo (specifically) is caused by ‘migraines’: the fact that you can often switch vertigo (and nystagmus!) on and off by moving into and out of certain position makes me satisfied that it is not a ‘mini-migraine’.

The aetiology of MAV has not been determined, and it’s probably fairly complex. It may even relate to issues with maintenance of homeostasis within the inner ear due to either in an internal or external influence and the impact that has on your brain’s allostatic load.


#18

True, but I think the plural form “aetiologies” is warranted here to allow for multiple causes, including migraines AND ear trouble. And not saying migraine activity can’t effect the inner ear - if migraines effect blood supply (vasoconstriction) to different parts of the brain of course it can.


#19

Yep that’s true. It’s a diagnosis but might be more than one ‘thing’ when they get down to it.


#20

I have read quite a bit about how cabin crew suffer very similar symptoms - headache, dizziness, nausea, ear pressure and pain etc during flights (as a child I would literally scream for the last 15 mins of a flight). In most cases, on examination, these folks did not have any discoverable abnormalities in their ears or sinuses yet changes in pressure would regularly cause debilitating symptoms for them so for me it highlights how any disruption to the ears and sinus can have a dramatic effect.
Mav