Thanks @Onandon03 interesting what you say I also agree my biggest triggers are light and movement not much I can do about that! Did you find you had food triggers ? I do find that so hard because Iām symptomatic daily I canāt say I notice anything huge after earning something ? As for the balance I agree do you think thatās the last thing to fix itself ?
Heās The Top Guy. If you wont believe him, who will you believe.
Iād call that āworkingā, an improvement. Itās all gradual. People with MAV can develop it overnight but unfortunately it doesnt go away as quickly.
So Dr S is satisfied with your progress. Thatās good, positive.
As you are still so symptomatic might I suggest you stick with Dr Sās advice and dont attempt until he gives the go ahead. VRT on unstable MAV particularly eye exercises and most particularly eye exercises designed for somebody else could do alot of harm.
Some. Dont worry about those now for you. As you say its so difficult if not impossible when you have constant symptoms anyway. Will become clearer once you improve bit more. I established mine years ago, long before I have 24/7 symptoms. Havenāt eaten chocolate since I was 13.
As you say I think the imbalance/dizziness/rocking hangs on and on then fades gradually like the other symptoms. Iām still waiting on that one myself! Helen
Hi Amy
As meds go ive had A LOT! Antidepressants, Anticonvulsants, Calcium Channel Bockers, Beta Blockers, Pizotifen, Supplementsā¦most of which i simply could neither tolerate or work with or just gave them up far too early and never gave them a far to quickly. Im now a candidate for Botox and had 2 treatments so farā¦it has helped lot for the chronic head and neck pain but i still have all the other MAV symptoms. I still take Gabapentin as i get a lot of ear pain and use Zolmitriptan as a rescue. Not 1 day has gone by that ive not been dizzy since 2014ā¦VRT made me worse!! Im going to give HRT a shot.
Hope your having a half decent day. If i had to choose a med to retrial it would be Pizotifen
Jo xx
I think many things help a little bit (2-3%), including the gaze stabilization, and if I do them all over time I can gain ground. Iāve only been on Verapamil for 2.5 months. And only on the highest 360mg dose for a couple weeks. If this dose doesnāt fully resolve the VM Iāll probably try adding an anti-convulsant even though Iām scared of themā¦
I got off to a bad start with all this and had no idea it was a migraine for about 9 months. Just thought it was anxiety and losing my mind, so I wasted a lot of time thinking it was ājustā anxiety and was prescribed an SSRI (Paxil) which wasnāt that helpful and very difficult to get on/off. Once I started to read stories on here I was able to see that it was probably a vestibular migraine and was able to get help from a Neurologist.
Thanks for the advice @Onandon03 no itās not that I donāt believe what I mean is heās only going off what I said it wasnāt a face to face app . I am functioning at 40% at best therefore I donāt think the medication Iām on is helping . I canāt walk outside it feels like Iām wearing a helmet and my eyes canāt keep up with anything this is what makes life so hard and impossible to live normally . I feel very depressed and down Iāve had episodes in the past and can deal with the balance issues and all the other rubbish but the stuff Iām feeling atm is crippling me thatās why I panicked when he said he meds are working as I donāt think they are . So Iām at a loss of what to do now accept go higher and hope for the best or actually pay to see dr s face to face
Hey @Jojo65
Wow thatās a lot Iām so sorry none have helped but so happy to hear the botox is helping dr s actually said botox wonāt help the dizzy stuff but is great for pain. Are you going to try anything else for the dizzies ? 4 years seems like a long time has it affected your daily living ? I am barley living and itās been 10 months . Pitzotifen is my next drug but I must admit the weight gain scares me
Amy
I can honestly say my quality of life has been affected dramatically these last few yearsā¦my working hours have slowly gone down and down as has my wages. My partner has been amazing and has done almost everything in the house from making meals to the washing and ironingā¦i cant even hang clothes on the line without having a bad dizzy episode afterwards. Im fine being a passanger in a car but when i get out i have more dizziness to where i have to lie downā¦now im only working 4 hrs a day and thats tough. When i cross the road my eyes cant keep up when i look left to right and yet another dizzy spell will comeā¦its horrendous. But yes Botox has helped my headaches and stiff neck so thats a plus. I may give Pizotifen another go if i dont get any betterā¦or HRT as my MAV is defintely connected to menopause. I had THE worst migraine of my life then MAV turned upā¦too much of a coincidence to say mine isnt migraine relatedā¦its hard Amy
Jo x
Iām so sorry jo I truly feel for you and think no one should have to endure so much for so long . Your partner sounds amazing and Iām sure is a big help. I def think mine is linked to hormones too! Iād be interested to hear how you get on with the hrt fingers crossed itās the answer your looking for. X
@Onandon03
@Jojo65
I am definitely starting to benefit from the Pizotifen and diet but it was a very up and down process - one day good and five days not so good. I could never work out I was going backwards and forwards, but gave up trying to find out. So far the advice I have had from Dr S has been spot on as he said I would be up and down to start with , so I have put my trust in him and hope that things continue to improve. Dr S also told me that I didnāt need VRT but if I did later he would arrange it.
I have been very happy on Pizotifen - i havenāt put on weight on it yet but have been careful not to eat too many snacks in between meals!
Fantastic Janā¦thats the drug i will give another go if all else failsā¦i did put weight on with it but i could tolerate itā¦long may it continue
Jo x
I didnt have dizziness the 1st 6 months of headaches so i follow your pattern
Jo x
I have heard the same jan itās just hard to know if this medication is working for me . How long on the medication did you start getting good days ? Also was this at the starting dose . I see my gp today to hopefully get another prescription for dosulepin to go higher x
Wishing you luck with the new med/dosage and hoping it brings relief.
My GP is a wonderful person but definitely not a migraine expert (I saw her this week between neuro appointments). This week she told me I was making my condition worse by being depressed, and suggested that I have a cup of coffee when I can see that the weather is changing in a triggering way! I only really trust the migraine-specialist neurologists when it comes to treatment and approach; they just have more experience. Though of course itās hard to see them as often as one would like.
One thing my GP did this week was give me a referral for an occupational therapist who works with people with chronic illness, helping people cope with their changed lives. I think that will be of value when I see the OT next month.
Thanks @lsengara I hope you find more relief too. I agree in that gps just arenāt equipped for this kind of stuff . However atleast yours seems understanding fingers crossed we both improve soon
Hi Amylouise,
The starting dose was 0.5mg per day in week 1 , 2x 0.5mg in week 2 and 3 X 0.5mg in week 3 . I am still on 3 x0.5mg per day but can increase this to X 0.4mg per day if I havenāt improved in 4-6 weeks time.
The first 3 weeks were very up and down but things began to improve after 6 weeks and by then having more good days than bad.
Hope this helps! I think your symptoms are worse than mine - I wasnāt getting the flashing lights and the feelings that my body didnāt be,one to me ,so perhaps the drug Dr S has put you on is better for you than pizotifen would be?
Sounds a good plan to me Jo X
Helen is right Dr S seems to be diagnosing Migraine Variant Balance Disorder - thatās what he said I had. It made sense to me at the time, but since joining this forum I have realised there are lots of variations! Quite interesting if you are not the ones going through it!
Itās certainly the ears that are bothering me now - if I can stop the tinnitus I will celebrate. That said it is definitely improving to the point that some days I forget about it for a few hours at a time. I have always had trouble with my ears - I have a perforated ear drum on the left and that seems to be the worst ear for tinnitus. Dr S noted the perforation but made no comment about any link re the balance issues I was having. I am always looking for links and explanations and am often disappointed
Yeah the science needs one or two developments.
Any way they can fix your perforation? That might reduce the tinnitus I would have thought?