Thats why I was approved Botox Helen because I was suffering Chromic Daily Headache with neck pain. I was never just a “dizzy” i always had a headache of some shape or form.
Jo xx
My insurance wont cover botox, does it work for MAV
Hi
Ive only as yet had 1 treatment in May which totaly eliminated my headaches and neck pain but i was told by my neurologist she would be be doing another round in August then review me again in November…as yet i still have dizziness but she says its " early days".
Jo
That’s frustrating. Hv they explained why. Not because they think it’s for cosmetic reason presumably. Maybe because it’s not an approved migraine preventative treatment yet maybe.
It’ll be interesting to see if it does work for all the MAV symptoms. That wd make it popular for general use then I suppose. Wonder if eventually it might take over from pills for migraine prevention along with those new injectable drugs. For the future.
You will be 1st to.know if Botox works for all the MAV symptoms i am still battling with daily Helen…then i will shout it from the roof tops!!!
i will be doing my VRT later today…in the form of Tesco:grin:
Jo x
Oh, No, not from the roof tops, JoJo, you might just get Vertigo.
Good Luck with the VRT. Wear yr sunglases in store, look left to right and vice versa as little as poss and don’t buy anything off the top shelf. Or the bottom shelf. I’ll cross my fingers you’ll be OK.
Helen
Well, 24th has passed. How did it go or was it put forward because you’ve since had Botox round Two meanwhile. Helen
Morning Helen
I had round 2 of Botox 3rd August and will have more 12 weeks from that date.
First 2 weeks post botox were just awful…worse headache, sore at injection site( couldnt comb my hair) neck pain and face pain and still have slight drooping of eyelids. 3 weeks on…although i still have MAV symptoms my headache has gone and neck stiffness also. Its tremendous for the pain element of MAV…BUT yesterday i was able to go to a get together at my sisters with my partner and all the family for a meal and had a few gins!!! Yay!!! AND im going out for lunch today and a couple of drinks:grinning:
Now i dont know if im having just a couple of good days or the fact im off work on annual leave and rested or the Botox is working…or all 3!!! Im still dizzy and off balance dont get me wrong but not severe enough to keep me indoors…im not changing shoes tho!!! That would be a stretch too far.
Hope your well
Jo xx
So glad to hear Botox is giving you some normal life back. Don’t knock it. Enjoy it whilst it lasts. If you relapse tomorrow just remember it’s probably the gin, not the MAV! Though of course that might just be ‘confirmation bias’. Guess your young neurologist is relying on your Botox to eventually pull you through as she hasn’t found any new preventatives to torment your system with yet. Helen
Hi , just reading your thread and this is literally how mine started I had painful headaches everyday for ages, then woke up one morning dizzy and it never really left. I’m on prop 160 mg a day and find it eases my dizziness a lot. At first it made me so tired and abit more dizzy which made me nervous but I’m now on about week 7 and the increases get easier to take. Do you still have daily symptoms? Any problems with your ears or eyes?. X
Hello
Yes I absolutely stll have daily symptoms. Not pain related much now because the Botox has worked wonders for that but i certainly still have eye , ear and sinus issues. My coordination is terrible just from crossing a road makes me dizzier and disorientated and some days when symptoms are severe i feel like my ears and nose are going to burst open with pressure. My eyes and brain are definitely not working together as they should. I 100% know the 6 months of chronic headache is the cause of my MAV onset…that and my history of migraine and menopause. I still feel my neuro will add another med at some point if i dont improve as she would like. But ive had a good few days and been able to get out and about of late. Cant tell you how glad i am to get rid of the 24/7 headache…now just the dizzy, disorintated, disconnected symptoms to get under control…which is gonna be the hardest it seems.
Jo x
Hi, I’m glad the Botox is helping you to some degree and I know you will carry on getting better in time. When you woke up with dizziness at first did it ever subside at first or has it always been there to some degree since. What ear and eye symptoms do you still suffer with? I also found my ears and eye problems didn’t come on at first like the dizziness did, did you find this aswell? Have you also ever suffered with vertigo?
It’s definitely so nice to get out and about and I bet with you same as me I can’t wait for this to not be my first thought when I wake up and go to sleep.
My headaches began 17th Nov 2014 then May 6th 2015 i got up to go to work but was so dizzy i could hardly walk i felt ill. My GP sent me straight to hospital with a suspected stroke…i was referred to a headache specialist and ENT specialist. I was seeing them both at the same time and BOTH diagnosed MAV given my history of migraine and previous 6 months of constant headache. All my ear tests were normal as was my MRI scan
Yes…im dizzy every day to different degrees its never really left since may 2015. I had an isolated vertigo attack about 20 years ago which was short lived and went away by its self.
I take Gabapentin as i suffer intermittent right ear pain/ pressure. I suffer blurred vision and when watching tv my eyes cant keep up with the motion. When i walk i feel like im being pulled to the ground( especially after travelling on a bus then getting off it). I still have a lot going on but ive had a taste of normality this last 3 days…to a degree
Jo x
Oh, how true, and how frustrating …
Please can someone give this woman a medal. Helen
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Ha ha…thanks Erik i will wear it with pride!!! Have you got a couple of hundred more the rest of our lovely friends on here too!!! Especially the ones worse off than me😁
Jo xx
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Hello friends, I thought I would revive this thread by documenting my experience, as I have very recently decided to give duloxetine/cymbalta a go after my GP recommended it. As many of you know, I have spent years avoiding meds but things have really come to a head stress wise in my life (new house and full renovation, moving to a different part of the country where I have little support, new baby, job uncertainty) and I’ve found myself struggling to cope physically and emotionally. Present symptoms are anxiety, low mood, daily dizziness/imbalance, visual vertigo, intolerance of anything vaguely stimulating, motion sickness, disrupted menstrual cycle, fatigue, elevated heart rate, disrupted sleep/insomnia. I am keeping to a keto diet, avoiding high histamine food, zero alcohol or caffeine.
Day 1 - took 20mg capsule before bed, as directed. Didn’t sleep a wink, visual vertigo really bad. Felt awful the next day.
Day 2 - halved contents of capsule, so took 10mg at around 11am. Slept ok ish that night
Day 3 - took 10mg around 10am, felt nauseous and zonked all day, still dizzy. Slept ok till 3am, unable to get more sleep.
Day 4 - feeling exhausted but really quite cheerful! Serotonin must be kicking in. Spoke to pharmacist about sleep aspect and he gave me the whole ‘10mg isn’t enough to even feel anything’ 
I guess we can’t expect them to get it.
So far decided to persevere on 10mg and increase very slowly to see what happens.
Would love to hear it any more of you are currently having success with this drug and at what dose?
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Day 5 - took about 15mg, spent a lovely day with friends so naturally lifted. Didn’t feel great, but managed a trip to a cafe, a bbq in the garden and a trip to the pub. Had more or less an uninterrupted sleep, but woke up with significant visual vertigo which took a while to settle
Day 6 - took the full 20mg. Didn’t feel good after a sociable breakfast and had to go and lie down. Tried to go out with my friends and do some stuff but had to get my husband to take me home and spent rest of day resting and watching tv. No appetite whatsoever. Really sleepy by about 9.30. Had another pretty uninterrupted sleep.
Day 7 - only a little dizziness after waking. Feeling good about the sleep I had. Intend to take 20mg again today
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Hello everyone,
So it has been a long while since I posted. That’s because I started duloxetine 20mg and felt significantly better. Not symptomless, but everything feels so much more manageable and I can lead a nearly normal life. Feeling happier and perkier as a result of the extra serotonin was definitely an added bonus and the anxiety that set in post long Covid has definitely lessened, as has the fatigue. I then welcomed my baby girl, so now can’t tell whether fatigue is due to long Covid, VM or just caring for a baby full time. There have been a few occasions where I nearly lost it due to sleep deprivation and feeling so terrible, but I had help and was able to recover.
Overall, feeling very positive about this drug and feel it’s helping a lot.
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