I don’t know how to cope anymore

Symptoms vary so much. Many believe PPPD is the end result, virtually inescapable result of uncontrolled VM/MAV. As it’s a variant balance disorder usually most people find it more noticeable when upright and moving. They are bound to be those whose balance is most affected. I’d stick my neck out here and say I suspect they are people who have bern confined to bed with this and who have experience the true rotary vertigo. From people I’ve talked to it seems more usually the ‘rockers’ who experience less trouble in motion but more sitting/lying down. I think this is indicative if two different types of MAV. What the significance is, don’t ask me but there must be one. Be good for some medical person to be interested enough to research this really and find it. Nothing will convince me that true acute MAV could be elevated by distraction albeit just temporarily. From my own experience constant 24/7 is exactly what it says on the tin. If total absorption (not in my experience even possible with acute, constant MAV) can reduce symptoms, It is indicative on a psychological element and needs appropriate treatment. Helen

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You reminded me. Adult colouring books, yes. A kind friend brought me some when I was in bed really acute. I can still see the look on her face when I opened the pencil box and the house lights reflected back off the coloured stems of the pencils and I reached from the bucket! Helen

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Diana, I can totally relate to feeling like a failure with this. At first because I was undiagnosed and didn’t know what was wrong with me, I kept waiting to get better, the longer it dragged on the more embarrassed I was of myself. I realise now I was being way too hard on myself, before MAV I would push and push myself further and further, with no regard for resting or looking after myself. Perhaps MAV happens to teach us something, I don’t know. I am learning to listen to my body, it’s frustrating to the Max and I still have to be careful not to overdo it even though thanks to meds I’m seeing improvement. Hang in there

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I just called and changed my appt. Thank God they had an opening for Wednesday!

Last night was the worst so far, I kept waking up every 20 min to the feeling of my bed violently shaking, just got up to get ready to head out for my daughter’s surgery and I seriously don’t know how am going to do it, meclizine isn’t helping anymore, my head feels like a bubble about to explode, no pain but pressure and just a weird feeling of fullness and I can’t even focus my sight on anything anymore because the rocking is just too strong. And it’s only 10am here

It’s almost week 5 of zonegran, not sure if he’s going to say to stay on it (even tho he made it seem like if it didn’t work in 3 weeks we could just go onto the next one, same reason why I changed my appt the last time because I wanted to give it a longer trial) but I would really like to try Effexor specially because of how anxious and panicky I get when my symptoms flare up

Ami, nori or Effexor are probably your best bets. I’ve been right where you are. It takes meds, but it gets better. I’ll pray for you and your daughter. :sparkling_heart:

I can say for almost 5 years experience of MAV that this is just an awful symptom and you have my sympathy. I feel the same but my nose and ears seem to take the brunt…i often wish ny nose would bleed or my ears drum.would burst…its better now with treatment but not gone…so dibilitating
Jo x

Definitely. Playing music is a good distraction sometimes.

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Well! Neurologist thinks I should stay on zonegran just double the dosage :pensive: didn’t seem to care too much about the anxiety and panic I’m feeling with the new increase of symptoms’ severity. I asked if this dark thought could be side effects of zonegran since it’s on the pamphlet they gave me at the pharmacy and said he doubted it.

My gut is telling me to just go with a second try to nortriptyline (nort was prescribed by neurologist but based on a list I gave him, he didn’t seem so know much about MAV) but I just don’t know what to do.

Oh and feeling worse than ever today :woman_shrugging:t3:

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Well we are not medics so we shouldn’t chose for you. Really the professionals need to do that. Your own doctor maybe? Having said that Ami, Nori, Propranolol, Topamax are most probably those most commonly/successfully used for MAV and well established. Venlafaxine seems to be getting more popular. It’s not been around long enough to warrant the ‘established’ epithet yet. That’s the only reason why I put it on its own. Perhaps you’d be best see another specialist. You talk of giving Nori a second go but didn’t the neuro tell you not to? I appreciate how you are currently feeling will always be front of your mind with MAV acute but don’t blame the drugs. You need to get on one and take it 4-6 weeks absolute minimum before you can expect to see any improvement if you aren’t to be disappointed. How you currently feel probably would have happened either way. May just be anxiety which will diminish in line with symptoms. Helen

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@Diana21, I am so sorry! Did you mention to him the idea of giving Nort another go?
Just the absolute worst when you feel like your Dr is not listening to your needs… the pits :frowning:
To brush off something so critical as mental health when it comes to documented medication side affects is horrible practice and your Dr should be ashamed. My opinion. Let this be your fighting call and give it all you got sister! It’s your body and your health… sometimes we need to firmly relay how we are feeling.
MAV affects on mental well-being is hard enough… to have a medication that you feel like is adding to that is nothing to mess around with.

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Yes my neurologist said to just stop it if it was making me feel that bad when I emailed him after 5 days …the thing is, his specialty is MS, I first went to him when I was having numbness in legs and arms for no reason and then I stayed with him for just the typical follow up for migraine pain every 6 months …Then the dizziness started, mentioned to neurologist and he said to go to ENT because he was clueless, around this time I found this website and made my appt with neuro-otologist who said he didn’t want to over step on neuro’a shows and to ask what medication he thought was more appropriate for MAV and in the meanwhile to go on migraine diet. I got to neurologist appt and all he said was to up the dosage of aimovig so I told him that I would like to be on something else and gave him a list of 4 meds that I learned about on this site (I made a post about that day) and he just went with the first one which was nort.

I know it sounds all over the place. Neuro doesn’t seem to know much about mav, he said to stop it after the 5 days compared to what I’ve read here when the dr said it’s normal to have increased symptoms and to stick to it … and I’ve thought about finding someone else but then decided to just stay with neuro-Otologist at least for a few months instead of going back and forward between them both.

@Naejohn I mentioned giving it a try but he’s more focused on the fact that if I once did well on topamax then I should do well now on medication Within the same family …last
Appt he mentioned that he thinks that as soon as I get the MaV under control the anxiety part will be better as well since I don’t have a history of anxiety/depression or panic disorders so maybe that’s why he’s more focused on just getting rid of the diZziness itself.

The office is supposed to be top notch and they are pretty much the only neuro-otologists that come up when you research my city

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Yes, I wouldn’t see much point in going back and forward between those two. Tbh from what you’ve written I wouldn’t bother seeing either of them again. One says he knows nothing about MAV and the other’s frightened to contradict him. From your viewpoint no use at all I’d say. You are new to MAV, you are very anxious about everything so I’d say you need to see somebody who knows MAV. A MAV expert. Somebody you can respect and believe in and who will give you exact instructions you can confidently follow so you know you are on a forward path and won’t need to keep wondering and worrying about everything MAV. Just my two pennies worth. Helen

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I agree. Keep shopping. Worst case scenario - see if you can do phone appointments after sending your records over. If you can’t get what you need locally - cast a wider net. And love, if you need an able bodied helper to set that up, ask us. I’m a great patient advocate. I volunteer to help you.

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@flutters you are too kind!!! Thank you

I’ll start my research tonight with hubby’s help in hopes to find a more suitable dr for me, if anything I’ll definitely reach out!!! :heart:

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@GetBetter flies out to see Dr. Hain. Consider that your worst case scenario. I take a cocktail of rescue meds to fly. It can be done.

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It’s so hard when you have kids isn’t it? My vertigo doesn’t sound as severe as yours but I was so thankful that when my worst episode hit and I was unable to get out of bed for the first time, that my 4 year old was in school. Otherwise I would have had to call his dad to come home from work.
This may sound impossible right now, but exercise whenever you can, strengthen your body little by little.

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Mine didn’t either, they really have no idea what it feels like. That’s why I also have a psychiatrist (who has a few MAV patients now) to co-manage my treatment/medication.

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You know multiple local MAVericks? We should get together during the day, with the lights off, somewhere still and quiet - like the arboretum.

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Today is a bad night. Almost 2am and I can’t sleep …as soon as I close my eyes I start feeling like I’m violently swinging and the sense of space is gone, it’s the most weird thing and now my anxiety is to the roof.

I know most of you are in the middle of sleeping or it’s the early morning for others depending on where you are but I felt like I needed to let it out and as usual here I am, my safe space.

Tonight was the second 20mg dose of nortriptyline. I noticed my heart rate going up last night and same tonight so I’m wondering if this is just part of the meds increase. All I know is that this sucks big time, I take half a step forward and too many back, I mentioned the other to someone here how I seem to get used to symptoms and feel less panicky but then something like tonight happens and I go back to square one :cry::cry::cry: …I just took a meclizine, hopefully it helps this feeling calm down and I can get some sleep

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