I know the theory. Keep on trialling the preventatives until you find the one that works for you. But how do you know if you’ve found it.
Had MAV 15 years but it’s only really got to me since it went 24/7 in December 2014. It then knocked my life from under me and nothing has been the same since. I. After many false starts Including Vision Training, VRT I started preventatives. Propranolol. I am now 2 years in and on the maximum I am allowed to take. Next step would be combinations of drugs.
Propranolol has worked wonders. It’s stopped alot of symptoms. I was bad, really bad. Eight days in bed with no balance half a dozen times. In fact I had symptoms I’ve never seen mention of on this forum at all. Tremor, anyone? I don’t have any SE I cannot manage and I’m very med sensitive. I’m 80% alot of time now, had a few 95% days just a couple of times and maybe 2-3 days together at that. Early to tell but It’s cut the severity of attacks, I think. So overall Propranolol has been good to me. I guess I’d fight the person who tried to take it off me.
I do still get breakthrough/relapse or is it a lower intensity attack? How do you tell. The rest of the time, although the 24/7 dizziness stopped a couple of months ago, still have this strange out of kilter imbalance alot of the time. I exercise. Walk. I am still living a rather restrictive life as I don’t want to push it too hard, too soon. I have to be careful with light but have done a supermarket trip or two. Might get bit of delayed reaction but it doesn’t now put me in bed for days.
Question: should I just hang in there and hope. Be patient. It’s only been the best part of 4 years so far. Should I accept what I’ve got, or start combining. Am I expecting too much. Should I hope the rest wil sort itself with time.
Be interested to read others’ opinions. Thank you all.
I don’t think I’m far enough along in this journey to answer. But, I do often get tremor.
Sounds like overall you’ve had improvement? My 24/7 started in September 2015 so not wildly different. I have improved and noticed it morph several times. I’ve been fairly lucky and managed to drop all meds in September last year.
I was never symptom free on Ami, but it made life ‘possible’ again. Sounds like Propanolol has done that for you, so I’d say it sounds like a success already?
Some people talk of getting to 100% on meds, perhaps that’s possible, but my improvement has been so much that I basically felt I’d rather come OFF them as soon as I was able rather than exploring any more.
Don’t lose hope you won’t be able to come off meds completely.
I know a lot of people who keep single drug. Then make lifestyle changes in addition to it , to keep at 95%
The diet, exercise, stress, sleep, hydration and eating small and often go a long way,
Dr S started me on Pizotifen in August 2017 and added Gabapentin in Jan 2018. do you need to wait for years to add new meds? no. why would waiting make it any better?
i understand you may not want to upset the balance, but additional meds are not likely to send you backwards. they may help, or they may not, but you’ll still be on the propranolol so your base level should be fairly solid.
my attitude is this: i’ll try the meds, because the meds didn’t make me ill, the MAV did. some of the meds will help, so bring them on - i’d rather find out today if a new med helps or doesn’t help than wait another year to find out…
Do you always have a problem with light, or only when you have a relapse/lower intensity attack?
I’ve had a strange body tremor four times, starting from my core and working out. Or do you mean hand tremor? As I’ve not been officially diagnosed with MAV (or anything else), I’ll just throw it out there. This tremor has happened only since my other vestibular/MAV symptoms began two years ago.
I’m glad the propranolol is helping; it has to be one of the drugs with fewest side effects, so that’s good. My orientation is that patience is all we have, so we need to be committed to caretaking, staying informed, and (safe) experimentation.
Can I say ‘pass to that one’? At the moment I don’t really know. Photophobia was pretty much the last symptom to develop in my acute MAV attacks. It then lasted throughout the attack and waned to nothing a couple of days after the attack stopped. Once attacks became chronic 24/7 it became a permanent companion and was really extreme. Lived like a mole/vampire. For me light is both cause and effect, it’s a main trigger, I think. Think it was restaurant daytime mixed lighting that finally tipped my MAV to 24/7.
Propranol seems to have controlled it mostly now. It still appears to be improving, I think. Bright sunshine when there are no clouds but bright blue sky I am still trying to brave. I avoid it mostly at the moment. Haven’t been in a restaurant since It Happened. I am still more sensitive to light before, during and following a relapse/breakthrough.
Tremor: no not a hand, twitchy left leg me. Used to do a dance all on its own, particularly when I was preparing a meal. No doubt it was trying to keep me upright when my balance was so bad. Fortunately, and I do hope Fate is not following this discourse, that was the first symptom the Propranolol hit on the head.
Thanks for yr kind comments. Like you I tend to think ‘time and patience’. Just wish I had more of the latter as I more than suspect does my SO!. It does go ‘OnandOn’, hence my username.
Now virtually twelve months on, it’s interesting to find that, sometimes, I’m still asking the same question. Is it the drug that works for me, or should I add in. Things have continued to improve for me over the last year. I have had 100% days, best so far was a maximum of ten in a row but they included me really feeling like My Old Pre-MAV self. I’m certainly not out of the woods yet by far and I’ve had my first full on attack (mid January) in over three years. Fortunately although it still kept me in bed for about a week symptoms were reduced by probably more than 50% throughout. I could even use my Ipad throughout, something previously unheard of. I’m still being careful with light, both bright sun and supermarkets but not as careful as I was previously. I know it doesn’t pay to push MAV whether with light triggers or unusual exertion and I still get delayed reaction to any triggers as always,
Some days I feel I might add in Venlafaxine most particularly having read a paper on uts efficacy compared to Sodium Valproate which any medics I have had dealings with always seem to want me to try. Then I read about Venlafaxine Withdrawal Syndrome (similar problems exist with other SNRI’ and some SSRi’s I understand as well) and the problems people have tirating up and I think I really should be happy with what I’ve accomplished and just hope it continues to improve which it seems it may well do.
I think perhaps people expect too much from preventatives. I also think modern people are too impatient to benefit from some ie betablockers, calcium channel blockers because they do take so very long to work sometimes so despite the down times, and I do recently seem to be experiencing more Extreme Ups and Downs than I did though hopefully quite brief, I want to stick with it and be grateful. I read recently in a PIL from Grampian NHS that only 50% of people benefit from each preventative they try so I was so lucky my GP chose Betablockers for me (comorbid BP condition) and hit upon Propranolol (second attempt) which has such an established reputation for migraine prevention and I could tolerate it. It took 8 months at an effective dose to start doing it’s stuff but it did it. So I think patience, time, together with reaching the maximum tolerated dose or a dose that effectively controls all symptoms for an effective length of time (opinions vary, 6 months - a year or longer) is of tantamount importance. I know alot of doctors don’t seem to fully understand this and many people are encouraged to give up/change too soon. I appreciate eight months is longer than most but I have read experts stating a minimum of 8 weeks, maximum four months although it will vary drug to drug. Amitriptyline I know is pretty quick with results expected within a month and I know some had results in a few days. So for anybody out there at the very start of their journey and struggling I;d say check out the statistics for your chosen drug and prepare to be patient. It may well prove worth it. Helen
I just started propranolol along with venlafaxine. We’ll see. It was an easy swap out for my atenolol.
Get some migraine glasses with an indoor tint. The supermarket becomes a friendly place again. Here’s mine from Theraspecs.
(Best selfie I ever took.)
Oh, Gosh. That’s You. No it cannot be. Well you know how one always gets a mental image of people. In mine you are brunette. Good selfy though.
Oh Theraspecs. Got some. Indoors and Outdoors ones. Bought them in 2015. Still in their box. Never tried the outdoor ones. Did once peep at the colours but cannot get on with the indoors ones. I’ve had grey/brown tinted lens made up by an optician, 6% and 30%, and another one I’ve forgotten, and I did wear OTC driving amber antiglare overspecs alot in the early days indoors on cloudy days, and at one time a tennis sports light shield and even a brimmed hat indoors and, very very bad, wraparound sunglasses indoors too very briefly following Total Vision White Out. Also tried Migralens - a lovely dark green but I couldn’t get on with those either. Far too dark. Just lately I’ve found Some supermarkets and the dentist was fine without anything. If feeling really off I avoid going in til a better day. Helen
I wish you every success with your swap to Propranolol. I trust it will not affect your blood sugar levels and does as much for you as it has done for me. My fingers are crossed for you. Wouldn’t it be wonderful if It stopped those beastly Basiliar type migraine attacks. Helen
That would be amazing. And completely unexpected. My blood sugar is a mess.
My hair gets darker the older I get but I’ve always been a blond. Once I tried a brunette dye but my hair wouldn’t hold the color. This is my summer bleach. My hair is super fine and I’ve lost a ton of it in the last five years of poor health. Bleaching it gives it a bit of volume and texture. My dad didn’t go grey until his 60s. I’m trending his direction. My younger sister has beautiful brunette hair with wavy curls - like mom, and grey, also like mom.
I am willing to trial just about anything other than something that is dangerous to my health to be 100% again. I don’t know if 100% is possible though? My sister in law was diagnosed with MAV 10 or so years ago (takes Amitriptyline) and I was chatting with her about it. I asked “so you feel completely normal now?”… she said “no, I’ve never felt normal since”. She leads a very normal life, so I was suprised. She said she still feels “off” all of the time but it’s her “now normal” which is fine. She even rides with her husband on their motorcycle! So, if I can maintain a “now normal” similar to that, I will be thrilled. I am getting closer all the time!
I am, too. I also ride on my husband’s motorcycle. I kayak, hike, bike. Normal? No. Functional? Yes, most of the time.
Yes. I was surprised to learn it’s possible to do a straight swap between two betablockers. I checked it out when I heard Propranolol was in short supply back along. It’s also possible once established on one AD to transfer to another as long as it’s the same class, ie Ami and Nori both being tricyclic antidepressants. Not sure about the dosages though between Propranolol and Atenol. Was that mentioned to you. The Exeter Headache Clinic PILs the neuro-otologist referred me to for such guidance state 25-100mg Atenolol but 80-160mg Propranolol so don’t quite understand how a straight swap would work. All the PILs I’ve seen refer to only using Propranolol Slow Release (I think Dr Hain says the same) so I assume that’s what you’ve been given. I was started on Immediate Release and still take it. Propranolol Slow Release only comes in capsule form and any capsule will give me reflux. Might be better if I could have avoided the peaks n troughs but my GP didn’t want me to change because she finds my med sensitivity irritating! Heken
I don’t know. I would have said most unlikely but then in March I had about ten days when I really did feel completely like My Old Pre-MAV self. And I‘ve had a couple still more recently, and lots of hours when I completely forget about having it so it’s obviously not affecting me in any way. Then sometimes you get a tiny few seconds of a symptom pop up. It’s impossible to avoid all triggers all the time and then you have a really rubbishy day or three, or suddenly feel vertigo-ey first thing after months without. It’s so very variable.
I cannot imagine how I’d be off meds. I know they are controlling the symptoms. I can feel them kick in. The symptoms are still here underneath. They have not gone away and the pills do not ‘cure’ just, if you are lucky, contain. IMHO I’d say it’s unllikely I’ll ever be 100% all the time ever again unless maybe whatever is the root cause goes away but surprisingly and just recently I’ve found it’s possible to have 100% symptom free days, so here’s to more of them. Helen
Today, somewhere I saw a paper stating Propranolol triumphs over Atenolol for VM. All I need to do is find it again! Helen