Hi everyone I’m new to this group but am glad I have found somewhere with people on the same position same. I’ll give a bit of background info about me before getting to my point.
I’m 27 and was originally diagnosed in 2012 after a long journey of being tested for MS prior to diagnosis of MAV. My vertigo was triggered by a plane journey back from Amsterdam and was like a foggy, fuzzy, dizzy sensation constantly in my head. It never goes and is with me 24/7. After diagnosis I was started on nortriptyline, worked my way up to 75mg and was at 95% ok most of the time although had some minor set backs which a course of cinnarazinw would put right. I continued on the medication until 2014 when myself and my husband wanted to try for a baby. I came off the medication with no deterioration and have been meds free up until now. Like I say it’s always been there but it was a more manageable level.
I went to Amsterdam again a few weeks ago and I have triggered it yet again! Thought I’d be ok as I’ve flown to Thailand since but I was taking nortriptyline. I’m back to the horrible fuzzy, dizzy sensation which is with me 24/7 and really getting me depressed. Started taking nortriptyline 3 weeks ago increasing my dose by 10mg every week so I’m now on 30mg. My worry is that I’m not really feeling much difference yet and panicking that it might not work this time. My husband seems to think it took a while last time but I’m sure I had some improvement by now.
Has anyone got any comforting stories of it taking a bit longer to work?
I would really appreciate some advice
I recently posted that I was cured by a bunch of supplements (800mg magnesium, CoQ10, B2 and St Johns Wort) but it turns out that I also had a relapse recently and that’ upsetting I’ve had a migraine for two days and strange more off balance feelings. I don’t know if it’s stress that causes our relapses and our brain needs to settle down or whether it’s another MAV attack … I am convinced it’s related to the high tyramine and high tannin foods I’ve eaten the past two days though on a low carb diet to get beach ready for the summer. argh So I was eating nuts (common trigger) , caffeine because I was tired on the diet, and then last night ate some supplements with “natural flavors” in them which may have been hidden MSG…oh and a bit of red wine. All not smart. Have you noticed if you have eaten anything recently that would have triggered this - maybe hidden MSG in something prepared (salad bars are my no-go zone now because I don’t know what’s in the sauces or dressings) or maybe some high tyramine foods that sparked this like aged things or nuts? Are you drinking more coffee? I need to cut out caffeine entirely I think now. It’s high time I tried that. Have you ever tried Petadolex? I’m considering going back on that…it’s a purified form of Butterbur that takes away the toxic parts of that plant.
Thank you for your response and sorry you have experienced a relapse also. Foods aren’t necessarily a trigger but they don’t help the matter sometimes so I already avoid caffeine and limit chocolate. I do believe it was either the flight or as on both occasions I had travelled back from Amsterdam I did have a very small amounts of cannabis whilst visiting the coffee shops. (Not something I usually do!)
I will carry on avoiding those foods though for now
I haven’t actually heard of that medication but I will look into it thank you
I find myself in a very similar situation to you. I was diagnosed with MAV approx 3 years ago and starting taking Nortriptyline with great success. After feeling 95% better my consultant advised me to start decreasing the dose every 6 to 8 weeks. I got down to 50mg but woke up a few days ago with all the horrible symptoms again and could of cried. My consultant said that it was normal to relapse and advised me to increase the dose to 60mg again. I have done this but I’m sure when I first started taking nort I noticed a difference within a few days. I havent noticed an improvement on 60mg yet and Im really stressing out! Sorry my post is not a comforting one to you but im hoping someone will say that this is normal and will take a bit longer! I dont feel that I can contact my consultant again to ask him!
Oh Helen I completely understand.
I’m up to 50mg now and have had quite a good day today which I’m taking as a positive. I was on 75-100 last time (can’t remember exactly) so I’m presuming now it is starting to take effect and I will still need to go up to the higher doses.
I would phone your consultant though and see what he says, that’s what they are there for. If I was under a consultant still I would definitely phone him as I’m fretting still that they aren’t working as well. When did you increase your dose?
Hi, I just wanted to bump this incase anyone has been in the same situation as me.
I’ve had a great result from nort, I had been dizzy free on about 40mg, my migraines were also pretty well controlled but then after a few months they weren’t so I’d increase the dose. I got to 80mg but my eyes were so dry I’d wake up with the it, additionally my memory wasn’t great.
I was told to come down to 40mg again which I did, my dizziness was pretty controlled I thought, I then experienced some stress and now I can have a non dizzy day every so often but my boat/rocking sensation is here all the time.
I was seeing Dr Surenthithan but they’ve closed the clinic, I will pay to see him privately but obviously this is very expensive and I don’t have an endless pit of money.
My question is, if I upped my dose to 50mg has this helped with the rocky sensation for anyone?
Thanks in advance, Alex