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Feeling a little hopeless


#21

Ha ha…Yes get the notes of the ENG and caloric test to see if there is a defecit in one of the ears. It’s good you are able to drive, many folks can’t.

Surgeries no, do not let anybody close to your ear. Conservative therapy is always the way to go.

Also it is good to try the amitriptyline at a low dose and see if it helps you. Since you are not on topomax for long give the amitriptyline a try, it is a relatively gentle drug.


#22

My neurologist wants me to try topomax for a month, but if not tolerated (and really, how can you?), we’ll switch to amitriptyline. I don’t like the topomax but I do appreciate that’s it’s nearly 10 pm here and I can think and type. By now I’m often incoherent. It’s been a while since I remembered that once upon a time, long, long ago I was (a still hugely clumsy) valedictorian.


#23

Please don’t be afraid of topomax, it has saved my life and my sanity! I only take 12.5mg in the morning and 12.5mg 12 hours later in the evening with 10 mg nortriptyline in the evening and I was a very severe case. I needed a walking stick, had to brace myself before doing anything at all, even preparing food so to have my life back where I can almost forget about VM is a miracle. Just don’t take too much too soon. I started with only 12.5mg a day and only added the other 12.5mg when I was sure it was working without side effects and I am very sensitive to meds. My doc had wanted me to work up to 50mg twice a day but I stopped when I felt better and have stayed on that dose for a year. I have been told I will probably need to remain on that combination for life because my symptoms were so extreme and I had been suffering for over a decade untreated so damage had been done but I am ok with that because I do not want to go back to how I was.


#24

Thanks Margaret. I’m giving it an honest try, though at the moment, 3:30 am, wide awake, nauseous, head in a vice and roaring tinnitus, it’s hard. I guess I remain a work in progress.


#25

Here are all the tests I’ve had; I think these are the most-common tests that they give. MAKE SURE you get copies of ALL of your test results (my copies of the below total almost 40 pages) and keep them. If you see a new specialist in the future, they’ll most likely want copies of your previous testing and it’s much easier for you to make a copy of them yourself than to try to go back and get them from previous doctors.

  • Audiological Analysis
  • OAE (Evoked Otoacoustic Emissions)
  • BAER (Brainstem Auditory Evoked Response)
  • ECoG (Electrocochleography)
  • CDP (Computerized Dynamic Posturography)
  • VEMP (Vestibular-Evoked Myogenic Potentials)
  • V/ENG (Video/Electronystagmography) which included the Dix-Hallpike Maneuver and other positional head testing
  • MRI of the brain, with and without contrast

#26

Thank you. I will.

On a separate note, I miss manatees. I went to HS in Ft. Myers and college at Eckerd in St. Pete. I used to see a little pod in Frenchman’s creek under the bridge abutment for the Skyway.


#27

Oh, wow! We went to Crystal River right after Christmas and got to swim with the manatees. It was REALLY COOL - we got to rub their bellies, which they loved!


#28

I have ALWAYS wanted to do that. My MIL lives in Melbourne. Perhaps she’s due for a visit. :slight_smile:


#29

I’m in Sarasota. While the Gulf temperature is cold, they all congregate at the power plant in Apollo Beach. We went up there a few weeks ago - here’s a photo of a whole bunch of them (it was cloudy so they’re kind of hard to see):

And here’s one who came up for a little air:


#30

Thanks for that. It’s been so long. We moved away in 1997. (OMG I’m old.) Sasquatch ain’t got nothing on the sea cow. They used to all come up and blow their vegetable breath at me when I’d pass under the bridge on the path from college to my apartment. I always wished I had a random cabbage to give them, even though I know you can’t feed them. I had a friend who used to play the bagpipes on the seawall. Sometimes the manatee and dolphins would come to listen. We’d ask her to play when our parents were visiting from out of town. Of course, at the time my parents just lived in Sarasota. After dispersing across the country, we all ended up congregating together in Washington State. Some of them are moving on again, but this is home now. I’ve come to appreciate that it’s dark about 8 months of the year here. I’ll take Vitamin D if it means I can go outside.


#31

So sorry to hear about all of the conditions you have going on at once, but you are very lucky to have all of your specialists talking to one another about your case! That is rare and is needed much more in today’s medical world.


#32

I wish that was all I had going on. I’m not in vestibular rehab because the insurance refused to pay for two types of PT at the same time. I’ve had 43 manual physical therapy sessions so far to try to put the pieces of me back together and then prise them apart after years of endometriosis, a hysterectomy (9/16) and rampant surgical adhesions that glued every organ system and my pelvis to each other from my diaphragm down. I am patiently waiting for Tuesday when my therapist will once again reset my painful dislocated pelvis. Then I’ll stop pretending I don’t need to wear my brace. (I know better.) I have an endocrine disorder that has comorbidities all over the place. I suspect it’s all tied back to some type of genetic defect really early on in fetal development. I look normal, when I hide the brace. I sound normal, unless my ears are stuffy. But I’m far from normal. (My husband seems to think I’m cute and the dog thinks I hung the moon.)

That said, I feel like I won the lottery with this team. I have 25 years as an adult with frequent flyer status in the US private healthcare system. I know the horror stories, the faceless uncaring bureaucracy. I’ve lived it. These people actually care about me and it really shows. I am very, very grateful. I know how lucky I am. I also kept pushing and advocating for myself until I got the team I wanted. Quite possibly God had a lot to do with it.

Also, I just spent 75 minutes of pure bliss in a sensory deprivation chamber. For a spinny little claustrophobe, I thought that might be a disaster. Nope, best birthday present ever. For an hour and 15 minutes the alarm bells in my head were silent for the first time in 6 months. Nothing to listen to but the tinnitus. Nothing to assault my senses or beat me up. I almost wept when I had to leave. But I know where to find it.

Thank you all very much. Having a community that understands means everything. :heart_decoration:


#33

Emily, FWIW, my insurance initially paid for my PT (VRT) then they apparently changed their policy and stopped it for everyone. I ended up having to pay for my last session. I didn’t actually miss it though - I don’t think VRT is much better than normal activity for MAVers and sometimes it even makes symptoms much worse. It used to give me a migraine and the PT was forced to reduce the challenge. But going out and being active in a variety of environments is probably just as good, but people’s mileage may vary. The advantage of the latter, though, is it’s free! Not only that you expose the brain to a lot more variety because of the different lighting etc. The main challenge with this is you have to push yourself to get out and deal with the discomfort, especially on bad days, but I feel it was worth it for me. Getting out really helps psychologically too and reduced anxiety for me. I’m not sure how easy this would be for you with your other health issues, but it’s worth a try? Do you take your dog on walks?


#34

I agree. I’m lucky to have remained very active, if cautious. My husband is what we refer to around here as a Northwest Action Figure. If I want to see him, mainly the back of him, I go wherever he goes. My husband refers to me as ‘Monkey’ because I hike with my hands in the air and am forever grabbing trees. Now at least he understands why I hesitate and ask for help when it gets a little difficult. (How he managed to know me for 30 years without ever working out there was an underlying vestibular issue is a complete mystery. I’ve been falling off my feet since the day he met me in high school. He’s just a no excuses, you have to try sort of guy, I guess.) Usually by this time in the season we’ve done some backcountry snowshoeing or cross country skiing. I haven’t wanted to go, even though winter sports are my favorite, because I’ve felt just awful. All my senses are set on red alert and I feel like a walking pharmacy. I’ve stayed closer to home and swam at the Y or tried not to puke when we ride bikes. (Yes, with supreme concentration and a brace, I can still do that some days. I said I was lucky.) Maybe you’re right. This weekend, I’ll go play in the snow on Mr. Rainier. It doesn’t matter if I fall down 30 times (again); it’s just snow. And that’s where my heart is. Thanks! :snowflake::monkey:


#35

It’s super trying, but I have a feeling the more you challenge yourself, within reason of course, the easier it will get. You have to try and squeeze as much compensation out of the brain as possible without triggering a migraine. Not an easy balance (ahem). :slight_smile:


#36

No kidding. That’s why I default to swimming. Yesterday we played hard on these Espresso stationary bikes with moving handlebars and screens that show hills and other riders, all under the glow of florescent lights. Hello Fioricet, did you see where I put that nausea drug?


#37

And yes, I got the joke. :wink:


#38

@flutters, have you read the book “Heal Your Headache” by David Buchholz? It’s about migraine and even if you don’t have traditional headaches, if you have MAV they currently try to treat it like they treat migraine. I suggest you at least read the part in the book about drugs and which ones cause rebound headaches. I’m pretty sure that Fioricet is one that he discusses. You can probably find the book in your library, or buy it for as little as $3.65 (used) on abebooks.com.


#39

I haven’t, but I will. I pretty much always have a headache, sometimes it’s a migraine. I’m not rebounding. I have a chart my neurologist and I made to track meds. Nothing actually works, though on the rare occasion I have a straight, uncomplicated migraine Fioricet has the best chance. Triptans don’t do much of anything. NSAIDs, both short acting (ibuprofen) and long (naproxen) only knock it back and then only temporarily and only in doses that make my kidneys ache. Acetaminophen is similar, though with the liver. Weird to know where your internal organs are. I stopped bothering with all the OTC and the triptans. Even high levels of IV migraine cocktail at the ER have failed to arrest an attack. I haven’t delved into ergots yet, but only because my pharmacy didn’t have a supplier for whatever type was on the last script. That will be remedied today, probably. I think I personally am financing the Nicholson’s Pharmacy family’s summer home. I have, in fact, hit my 7 day cap on Fioricet (3 total taken over 2 days in a row). Trokendi is causing insomnia which is translating into migraine. If I look like I’m here 24/7 It’s because it’s the least disruptive thing I can think to do in the wee hours while everyone else is sleeping. I’m running on 2 hours of lousy sleep and nothing but Trokendi. Work is gonna go great today.

Thanks for your concern and the recommendation. Reading is something I can do in the middle of the night, if the light is dim.


#40

Ahh, if Trokendi continues to cause insomnia, then you might ask about switching to nortriptyline or amitriptyline. Both do the opposite in most people and cause mild drowsiness, which is why they are generally prescribed to be taken in the evening (I take mine with dinner).