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Medication and dosage


#41

Doubt even the medics could give a definite answer to that one. I’d hazard a guess and say, for some reason, currently your brain is more dependent on ‘messages’ it receives from your feet in order to maintain your balance and its getting more reliable signals from your feet the longer they are in contact with the ground and perhaps the more of your feet surface area is flat on the floor. You say you can’t jump either. Can you skip with a rope? Can you wear high heeled shoes. Walk around on tiptoe? Does wearing a pair of shoes you don’t often wear affect you? Try some things, safely and see. I’ll be interested to know.

I’m always amazed when I hear some MAVers can still run. I was never into sport. Most I ever did, pre-MAV regarding running, was literally running for a bus. Since MAV I can’t run or jump. Try pretending to play hotscotch or like little children do jumping over the ‘lines’ on the pavement slabs. Particularly running, or even trying to ‘rush’ - I tried earlier to rush upstairs to fetch something for my husband who was just going out - and the MAV kicked in. Instantly went from stable to rocking and grabbed a bedhead to stay upright. It’s like my balance cannot keep up. Have the same with really fast walking. Can usually stroll a couple of miles comfortably, no need to stop or sit down. Try to do some ‘walk as quickly as I can to get my heart really working’ and it’s like trying to run or the dash upstairs. It’s improved a bit with the meds particularly in that the effects triggered tend to stop quite quickly and I revert to baseline but unlike @flutters I can’t outrun my MAV. Once wound up continuing to provoke it it would leave me constantly dizzy again for 4 or 5 days or worse. Underlying balance system obviously not stable enough to cope yet.

We are all bothered by what to others might seem rather trivial symptoms sometimes I think we tend to forget MAV is a balance disorder and there’s nothing insignificant about the balance system when it comes to keeping bipeds upright. It is a major issue of fundamental importance. Helen


#42

That’s so interesting Helen I mean I’m the past between recovery I went back to all of the above so my answer is why can’t I now ? I can run and not get dizzy but it makes me get flashing lights and head feels off tbf I haven’t tried in a long time . It’s more the pressure BUT I can do a handstand or head stand and do a single leg squat not high heels lol haven’t tried BUt surely if I can be upside down and b fine then I can get back to running . I don’t care what any doctor says there is no way ur brain cannot learn to adjust if u keep pushing ur threshold which is what @flutters does . I don’t give up easy :slight_smile: so wil try all the above


#43

My story is much different. In 2009 I was terribly dizzy and unable to to live my life with any normalcy. Long story short I was put on nortriptyline, I ended up on 75mg and was symptom free up until March of this year. I did go down to 50mg 2,years ago and felt great…side affects got much better, lost 10 lbs and felt a clarity that I was missing on 75mg. Not sure why my symptoms came back out of nowhere? I’m now back up to 75mg and also now taking 120mg of verapamil. I’m mostly symptom free. I hate the weight gain on nortriptyline and may be willing to experiment with some other drugs that don’t cause weight gain. I guess I’m wondering why people are talking about trying to go off meds that help you feel better? I would rather put up with some side affects of medications and not be dizzy… I truly believe if you are suffering from MAV it will not go away without medication. You have to be patient because the meds take time to feel the full benefit and finding the right dosage and the right meds can be difficult but certainly not impossible. Be patient with your meds and you will get your life back!!


#44

As I said a few old time members are not on meds.

I have improved without medication for 11 months. I did take it for a while when symptoms were really really bad.

I think it’s very personal and there are surely different drivers for MAV (it’s just a list of symptoms after all, not a known aetiology). There is something more going on than just the neurological stuff imho, probably some instability in the sensory system. For some it could be that that is resolving in the background, healing if you like, so if you are lucky, the meds are no longer necessary.

However, if that’s not happening, for sure, take the meds and enjoy life more, why wouldn’t you?

In any case you will probably only be able to tell after years, not months.


#45

Could someone please raise this paragraph in lights somewhere. Blackpool? Broadway maybe?

I too truly believe if you are suffering MAV to the point it’s affecting the normalcy of your life, meds, at least initially, are the only way forward. I had episodic MAV for more than a decade undiagnosed and unmedicated.even though I only perhaps had 3 attacks in 2 years on average and all symptoms disappeared completely between, looking back those attacks were bad. A couple of times I was nearly hospitalised through uncontrollable vomiting from the constant vertigo. In 2014 the attacks turned into 24/7 dizziness and from then on I was unable to lead a normal life for sure - not even for a day. . At this point I had no diagnosis of anything nor any idea preventatives existed. After 4 months of waiting for the dizziness to stop I tried VRT for 6 months and became progressively worse until I ended up in bed for weeks at a time. There was no way back from that for me but meds.

Welcome to my world!


#46

Thanks so much for sharing @Lisagy could I ask a few questions :slight_smile:

Did you have visual symptoms ie visual snow / shimmering ? Also did you ever get the spaced out dreamy feeling before meds . At what dose of nort did the symptoms start to go away? Only just gone up to 50 and although it has helped I’m no where near living a normal life . Your post has given me hope that maybe I just need a higher dose of this drug rather than to switch .


#47

What have I missed? What doctor was that, please.

‘I don’t imagine ‘our’ inability to run is because our brain’s forgotten how. When we have active MAV something is causing problems with our balance and to keep us upright the brain uses more of its power to do so leaving it less spare capacity for other things. Something has to give. When the MAV symptoms kick in, flashing lights, head feels off, dizziness, we’ve provoked one trigger too many again.


#48

I have seen this in Dr.S multiple appointments notes that once MAV comes on full force no one recovers without medicinal help.So i agree if you are suffering MAV to the point it’s affecting the normalcy of your life, meds are the only way forward.


#49

I meant once it’s controlled a Physio once said I would never go back to running I don’t believe that to be true :grimacing:


#50

I feel like there are people here that try to be brave and muscle through without medication and look forward to having agood day here and there. I personally am not willing to completely go off medication to see if my symptoms may be gone. I don’t want to risk feeling sick for any amount of time if I don’t have to. I’m all for testing to see if I feel good on lower doses of medication…it’s much easier to add more mg’s back than it is to start over.


#51

I’ve had episodes of mav at 3 different times in my life no meds and recovered this time chronic. Dr s also told me the same thing


#52

I was not symptom free until I reached 75mg. It took several weeks for me to feel confident that I could make it through a day and feel good…a day turned into a week, to a month to almost 10 years. I’m now experimenting to see what’s going to be the best meds for me to be on but I’m living my life and feeling good.

As to your symptoms, when I was at my worst I was feeling everything you’re describing…every day was a new day of symptoms but never free until meds we’re in full force! You’ll get there, you will get your life back.


#53

But of course that’s how you get to zero … you just titrate off and if the symptoms don’t come back too badly you can keep going.

Of course it depends on which medication you are on.

If you are on a tricyclic its pretty easy to come off and back on.

Probably not wise to mess about too much with an SSRI though, very hard to kick those.

The payoff of getting off medication is in your spirit, your tendency to put on weight and your bowel, mainly. That is worth it if you can make it.

Also, not wishing to worry anyone but you shouldn’t be taking any medication chronically if you don’t need it.

If you do, that’s fine, but you’ve got to have a reason.

Anyway, it’s irrelvant to those who’ve just started this journey, obviously.


#54

Once it’s controlled you will go back to running!


#55

Thank you so much @lisamaryland I needed to hear this today . I think I scared myself when this started and assumed 20mg would work when it didn’t I wanted to try another drug so hearing that really boosts me to just continue to go higher with the dose . I used to think it was rare to need a higher dose now I realise this just simply isn’t true ! As for the meds to get your life back I’m 100% with you ! :slight_smile: il take anything right now


#56

Thanks so much please god I can and shift the extra weight I’m about to put on lol :grimacing:


#57

The weight gain is really hard for me to accept! I hate it! Have you put weight on so far on nortriptyline? Not everyone does.


#58

Nortriptyline has to build in your system so it definitely takes patience to find the right dosage. If you’re feeling some relief I would continue to keep going with this med.


#59

Thanks so much Lisa I felt relief at the beginning but now it’s just stopped however I made a choice to not give up on this medication untill I get to a higher dose then if nothing happens il move on. I take 80 prop too but I feel this does nothing and dr s said it wasn’t helpful for mav . I find the prop way worse for weight gain !! I’m a trainer so I stil train 4 tines a week however it’s light now ( couldn’t for 5 months ) I track my calories very strictly I haven’t lost but I haven’t gained if I slip up I gain very quick which isn’t usual for me so must be the drugs . Best thing I can suggest is regardless of metabolism scientifically there is no reason you can’t lose the weight BUT it will be 100% harder . I would use my fitness pal and try tracking ur calories ? It’s so helpful


#60

I’m going to try the Keto diet, I’ve heard people have had better success losing weight. I’m with you, if I slip up the weight goes up. Thanks for your advice!