Morning all been a while since I did an update currently on 40mg of nort due to go to 50mg and 80mg prop I would say I have had 30-40% improvement with this .
My main symptoms right now are . Pretty bad spaced out / dream like feeling / sensory over load / shimmering heat haze / constant imbalance and visual snow . / very light sensitive
I’m nearly 10 months in with this just wondering if anyone’s has been where I’m at , and gone higher on the dose and has much more relief ? I’m due to speak to dr s in 2 weeks but wanted some advice . I want to be able to drive at night and go on a holiday atm I can’t do either . Just wondered if anyone had some positives and is it normal with this to only be 40% better at this stage . Thanks in advance and hope your all well
Sorry, I don’t have the positive answers you crave. But am glad you have had some progress and no bad side effects from yr drugs combo. Not long til you next get to speak to Dr S. He will advise you.
His guidance is paramount for you. You are now taking propranolol at about 50% of what’s considered the max migraine preventative dose and about the same in Nort so perhaps there’s some logic to your 30-40% improvement. Higher doses tend to bring greater relief. I suspect you have yet to reach a high enough dose to be effective in controlling most/all of your MAV symptoms - your maximum effective tolerated dose. Assuming you are doing the diet Dr S is strict abt, avoiding caffeine and painkillers etc, guess you may gain further improvement by looking again at triggers (both food and environmental and including stress), and improving trigger avoidance.
Must admit from my ongoing experience I think hormones could well play a big role in MAV. Perhaps that would be another area worth you taking a closer look at… Fluctuating hormones ie at puberty, menopause or for any other reason could well have an involvement.
It varies so much between individuals I wouldn’t think it possible to answer this question. Helen
Thanks so much for the reply I totally understand that I guess it baffles me how some people take 10mg of ami and that’s it all symptoms disappear . I guess it makes me worry that I seem to be a harder case. But thank you for the statistics I had no idea and that is reassuring can I ask where you foubd this info ?
I trust dr s ans known he is the best and can offer some reassurances
My experience was I limited myself to 20mg of Ami (in an effort to limit side effects and reduce the risk of any long term neurological impact of being on an AD chronically - don’t worry I’m not aware of any proof of this, was just being cautious) and symptoms were more under control but certainly didn’t disappear.
What it did do was:
- stop the migraines (if not all the vestibular attacks which imho were not migraines).
- dizziness was definitely much much reduced on Ami and improved with dosage to 20mg (then got worse so I didn’t go beyond that).
- got rid of visual vertigo and allowed me to use the computer all day and watch TV. I could actually detect more eye strain if I took just 5mg less one day.
Imbalance lasted throughout the time I was Ami (1.5 years), I just sucked it up (one has no other choice really). Now it’s gone finally, touch wood, but nothing to do with the meds as I still had it after I stopped taking medication for several months.
Managing people’s expectations, I don’t recall anyone reporting on this site that they have got rid of their symptoms completely with medication, just reduced them significantly and got rid of the worst of it so you can live an almost normal life again (which is a big deal of course!)
Time and patience takes care of the rest.
Baffled me, too. That one. I agree with every word @turnitaround writes although I struggle still to understand how he managed on so low a dose. ( Maybe it’s someway linked to us all having different causes for the MAV in the first place)
Question is; have you ever talked with one of these plp, actually bn in communication with one? I haven’t come across one yet. Where are they all I ask. From my experience with PP and I’ve seen plp on the net who took 10 or 20mg of that rather than ami although most said it made them worse so they stopped. Some only took one dose even that low a level anyway. I’m surprised so low a dose could have any sort of effect at all, good or bad unless you had an allergic reaction to it so this statement makes me wonder. Surely either they had some other condition and not MAV or the placebo effect came into play. The brain is an extremely powerful thing and thinking the drug was the ‘cure’ all their worry and anxiety ceased, and the dizziness stopped.
Does seem that way. You’re a hard case to crack and I’m an even harder one along with a few more who linger on mvertigo.org I suspect. If you can decrease the worry in any shape of form you will increase the odds in favour of recovery proportionally.
The statistics: the leaflet in the PP box quotes 80-160mg daily for migraine prevention. The exeterheadacheclinic.org.uk quotes 100mg for amitriptyline. Nori must be very similar and I remember Daniel’s success story. He’s on 70mg. Dosage varies, often higher again in the various scientific papers you’ll find on line. Helen
If you can tolerate the meds definitely go higher. We had a nortriptyline success story recently and she titrated to north of 70mg over an year and declared success. To quote Dr.S for some people after a certain dose it turns off VM like a switch.
I think with you since you workout regularly weight gain is not a problem. Weigh gain is possible with both Nort and Prop. So if Dr.S says go higher, and you can tolerate I see no reason why not. Nort + Prop is also a good combo.
Are you referring to Daniel? (who I’m assuming is a guy, not that it matters)
My bad, perhaps I should have kept going, but moot now, thank goodness.
It’ll be interesting to see if he can now titrate down and get off the medication completely at some stage … it can be done (if not all at the same speed).
One wonders how long it might be before they attempt to come off the drugs. A year on them at least I understand and then not everybody finds they can come off and not get MAV symptoms back again. From what I’ve read tricyclic antidepressants are easier to come off of than the SSNR’s such as Effexor.
Yep, coming off Ami was a cinch … but you still need to be brave because the symptoms obviously come back a little, but I was so keen to get off them I didn’t care.
The main relief you get without Ami is the return of a normal metabolic process and your ‘motions’ return to normal
The second thing you notice is your personality become brighter and happier (so my wife tells me)
Those observations made me commit to persevering without medication and in my case it paid off. Beatles909, Liv85 and Suki530 also made it to list a few. (I didn’t @ them so as not to bother them)
We hardly ever talk about titrating off here … that’s bad. I personally think people should push themselves to come off if at all possible in their case … but obviously one’s situation is individual especially timeline.
It does seem to take at least 2-3 years from inception to even consider it though …
If anybody had told me five years ago I’d now be swallowing betablockers by the handful my teeth would have curled. Never taken pills regularly ever. I’d take paraceutomol so rarely I’d forget where I’d left the packet between times. However they became a more attractive option when the alternative was living in the dark like a mole. Flat out in fact. Rather more like a mole that had been run over by a steam roller. Decision depends on where you are standing or - in my case - lying at the time.
Lol … for sure, Helen.
I do think we should consider having, if possible a list of recovered people in a special place.
By recovered I mean lives a normal life + or - a few annoying moments;.
Perhaps split by those who are still on meds, but consider things to be going normally, and a Gold list where we put those who’ve recovered enough to live a normal life and don’t need medication …
I wonder how many who don’t visit the site anymore have managed that?
Thanks so much Helen really appreciate your advice I think I have a high tolerance to meds in general . When I think back to anything I’ve taken be it pain killers I always needed a lot . Maybe because I workout my brain is very hyper active a gp one said this to me and now I wonder my aim is to get as high as I can before swapping . As for the 10mg people I’ve spoke. To someone in real life yes and a client of mine also only took 10mg however I am sure this must be rare rather than the other way around . Thanks for sharing the statistics I have had episodes in the past and complete remission inbetween so I try to remind myself of this. I def have reduced worry from how I was was it’s more the stress of not being able to do whT I could before . That is a lot harder to not get upset over especially being so young
Thanks so much @GetBetteri have got over the weight gain aspect I just want the migraine controlled at thus point . I speak to dr s in a few weeks I’m not gonna give up on this medication. Untill I can get as high as I can I am praying I really do get to a dose and my brain just comes out of this crap
Thanks for the reply @turnitaround means a lot . 20mg of nort helped but then it just stopped so I have accepted I will need to go higher just wish I was one of the lucky ones I guess .
I do wonder if being so active is why my brain can can’t calm down but just a theory lol
What you say makes a lot of sense I asked a gp this and he said the migraine can go on as long as it wants the mess are there so you can live with it untill eventually it stops and ur brain heals which in theory is what you have said . I can hack minor symptoms but ask you said I just want to get back to normal living which I haven’t as of yet the spaced out feeling and visual aura is by far the worst at the moment and if does makes things very hard
I have very different ideas about the actual aetiology to this condition to many but one thing I truly believe is that this thing is very annoying but most probably very benign.
In fact for something that is probably ultimately so harmless it’s amazing how ‘harmful’ it manages to seem. In other words, the biggest challenge MAV presents is an almost entirely mental one.
It does get better. Sometimes we need higher doses, or more than one med, or a totally different med. I’ve been right where you are. I’m in a much better place now.
Thanks so much @flutters did you also not get relief from a low dose or have certain meds not work ?
I failed topomax (dramatically) and amitriptyline before finding a decent groove with Effexor at 37.5 mg. I’m not 100% and don’t expect to be. Effexor, ketosis, exercise and the occasional Meclizine have me rocking along at 80-85% most days. Good enough.
I wonder if the medics would consider your situation a ‘success’ too. I expect so. Apparently a general 50% reduction across the board - frequency, intensity/severity of attacks - is deemed a success medically. Although I did read Dr Nicholas Silver wrote his aim with migraine prevention was ‘to achieve 28 or more crystal clear headache-free days per month’. Assuming ‘our’ dizziness stands in place of the ‘headache’ as MAVers, that would be much better than a 50% overall reduction as I’m sure you would agree. I’d certainly settle for that one!