The Vestibular Migraine & Secondary Hydrops Community
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Feeling a little hopeless


#1

Hi Everyone,
I’m fairly new here. I had my first experience with vertigo last year and it lasted about 3 months. At that time I went to acupuncture which seemed to help and the dizziness went away although I did continue to get migraines. In October I started with the vertigo and have been going non stop since then. I’m fumbling around in a fog and have constant neck and jaw pain. I have kids that need to get to school and extracurricular activities, I have a job, and have to maintain my house. I finally have an appointment with a neurologist this week after waiting for 3 months. What I want to know is does anyone ever feel better? Reading these posts makes it seem like everyone is dizzy all of the time for the rest of their lives and possibly getting worse. Is this the case? Do you have periods of relief? I’m terrified if this is going to be my life. I don’t want to socialize with anyone or even leave my house and am starting to feel pretty depressed. I’m just looking for a shred of hope. I would sincerely appreciate it if someone could please tell me something positive. I need hope!


#2

Get on a preventative that works and get your life back. Most people spend years trailing meds once they find what works, they move on with their lives. Have you tried any preventative yet ? Nortriptyline and amitriptyline are good for starters.


#3

I’ve been dealing with MAV now since around July. I was just diagnosed earlier this week and my neurologist started me on Verapramil. I’m also doing the migraine diet and meeting with a naturopath next week to get help with supplements. I think mine was actually triggered by hormones so I’m hoping if I can get those under control, I’ll start feeling better. So far only 3 days on the meds and I’m feeling normal again. Praying it continues!


#4

Thank you both. I’m super sensitive to medicine which is was made me hesitant to try it last time but, at this point, don’t think I have a choice. I’m also perimenopausal so hormones could play a role. Hopefully this neurologist can get me on the right track. Getting my life back would be ideal!


#5

yes, people do get better. i have gone from “living hell” last summer to about 70-80% back to normal. diagnosis, medication (i’m on pizotifen + gabapentin), diet and lifestyle alterations seem to have all helped a lot.

don’t despair. you can get a lot better and even completely better. it’s not a walk in the park, but try the meds, and stick with the ones that seem to work. and see a MAV specialist oto-neurologist, not just any old neurologist. even if you have to see them privately, it will be the best money you ever spend if it helps get you better.

good luck


#6

Thanks so much. I am definitely in the living hell phase right now but really trying to keep it together. Is there any place that you know of that may have a listing of specialists? Every time that I think I’ve located one i find out that they’re no longer in practice or no longer in the area.


#7

Where are you located? Someone on this forum may know of specialists in your area.

Also, check out this category:


#8

I’m in Baltimore so I feel like there should be someone at Hopkins. The doc that I was originally referred to there is now out of state. I’ll check out the link. Thanks so much


#9

Good news:
Hopkins has a Headache Center:

Bad news:
“NOTE: We are currently accepting new pediatric patients. New adult patient appointments are not available at this time.”

If I were you, I’d call them to see whether that statement is still correct. And if they say they’re still not accepting new adult patients, then I’d ask them if they have recommendations for other doctors in Baltimore.


#10

And now that I’m looking at the Hopkins Headache Center website, I see they have a list of other specialists that they refer to. I’ve seen Carey’s name before so you might try to track him down:

John Carey, M.D., and Charley Della Santina, M.D., Ph.D.
Otolaryngology; dizziness


#11

@Acuamy Johns Hopkins also has a Vestibular Disorders Center. I went there in October 2015 and got rotary chair testing done plus a long consult with the doctor. He also did a lot of physical tests and exams in the exam room. It looks like they re-did their website a bit since I was there but it may suit you better than the Headache clinic (two separate centers) if your primary symptom is dizziness.

https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/vestibular/


#12

Unfortunately John Carey is no longer seeing patients with vestibular migraine. I did make an appointment with Dr. Agrawal at Hopkins but, of course, it’s not until April 4th. Sure hope I’m feeling better by then. I 'm going to look into the vestibular center as well. Thanks for the input.


#13

I haven’t tried any meds yet. I generally do not do well with medication but don’t think I have a choice at this point. A hairstylist at my salon says that Klonipin worked for her so I may ask the doc about that as weill


#14

When my doctor wanted to put me on a preventative, he gave me the choice between amitriptyline, Topamax, or desipramine. I asked for the mildest one to start, which is the desipramine. It has worked pretty well. I’m on 25 mg a day and since September of 17 I’ve been feeling pretty normal. I haven’t noticed any side effects to speak of (well, a little constipation!) Now, in the last couple of weeks I’ve noticed something “going on” as if my vestibular migraine wants to act up. It’s not nearly as intense or bad as it was last summer. In fact, compared to the last couple of “episodes” before I was on medication, it’s barely noticeable. So I’m taking this to mean the meds are helping. Don’t be afraid to take something, just ask for a milder option and try it.


#15

Effexor XR worked well for me. I got it from my family doc.


#16

I am so glad I found you guys. Just knowing I’m not alone in this is huge. I’ve had MAV symptoms for a long time, but it’s ramped up considerably when I had a truly horrible migraine with brain stem aura that sent me to the hospital in September 2017. (Washington State had a really bad fire season this past year.) I have several interlocking issues: the chronic complicated migraines (with and without aura), chronic tension headaches, advanced TMJD, Eustachian issues with implanted tubes, roaring tinnitus, I failed the VNG vestibular testing in epic fashion earlier this week, atlas subluxation and an endocrine disorder (plus depression, because, obviously). I wish they did recalls on genetics.

I’m doing the rounds - GP, endocrinologist, ENT, neurologist, optometrist, audiologist plus atlas orthogonal chiropractor and hopefully vestibular rehab.

After 18 months of staring at it, I finally broke down and started Trokendi XR. My head hurts less, and the MAV seems more subtle but maybe that’s because Trokendi hits you like a truck. I’m reading here maybe amitriptyline is the better choice. Anyone have any experience with both of these two?

Thanks, Emily


#17

Start small on the topomax, don’t rush into it. Sometimes lower dose is all you need.

You can talk to doc and add Amitriptyline on top of this. I have seen this combo in the Facebook groups.


#18

Thank you. I can’t say I’m in love with Trokendi XR, even at the introductory level, but since I started it my 24/7 tension headache is more like 12/7 and the vestibular symptoms are a little better some of the time. My migraine risk feels lower. We’ll see. I suspect SEH might be at play. I’ve done vestibular but not yet auditory testing and haven’t yet started vestibular rehab. My neurologist has both meds on my list, though as an either/or rather than an and/or. I’m going to have to ramp up from here; the last 8 hours or so before I take the bedtime dose of Trokendi, I find myself toying with taking a Fioricet to knock the headache back down to bearable. Not that Fioricet, triptans, acetaminophen alone, NSAIDs or vasoconstrictors in general have ever really worked for me. I’ll do what I always do, wait it out.

It really is a blessing to know I’m not alone. Thank you.


#19

Did you do VEMP and EcoG to confirm the SEH ? You can also ask your doc about effexor extended release another popular mav drug. Has milder side effects compared to topomax.

What can I say, misery loves company (kidding!)


#20

They called it VNG testing. To be honest, I’m not sure what all we did. As I managed to fall over pretty much immediately during the close your eyes and just stand there bit, everything after that was increasingly creative ways to torture someone while seemingly just sitting or laying down with goggles on. The caloric testing bit was especially hideous, though the visual aura it generated was kind of pretty. I didn’t hear anything she said past medical necessity for vestibular rehab. Too dizzy with too much going on in my vision. I crawled home in very slow rush hour traffic (probably the only time I’ve ever been glad for such slow traffic) and took a migraine cocktail. I did catch the concept of SEH fly by. She said something else, too, but the only bit I caught was surgery. That would make four surgeries in three years, something I’m rather keen to avoid.

We have the second half of whatever fun testing we’ll do on Valentine’s day. Hopefully, I’ll be in reasonable command of my faculties and not too migraine-y to ask her all the important questions before we start. Either way, smart functional me will eventually re-emerge and request the chart notes.

I do get the impression my entire health care team is being very thorough. I feel extremely lucky. My neurologist is part of a Neuroscience Institute Headache Clinic. Every other specialist works with her regularly. Actually, it turns out several of them (neurologist, audiologist, vestibular therapist) like to have lunch together monthly and discuss the hard cases. I hear I’ve been a recent featured topic. The benefit and the curse of being medically ‘interesting’.