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New here ... looking for reassurance


#121

I’m no good reading in the car either. Look at a map but not sustained reading. Know motion intolerance is symptomic of migraine but it’s indicative of balance issues really. Suspect all MAVers might suffer it but not all straight migraineurs. With MAVers it’s not surprising, there’s often ear issues so the brain relies on the feet, legs etc (proprioception) and the eyes more for balance So we get in a car and take our feet off stable ground and then bury our head (er, eyes) in a book. What’s left to balance with. Not alot. Pass the bucket please and don’t even mention barley sugars. I had so many as a child in a vain attempt to control sickness, the very smell of them still makes me nauseous.


#122

Hello
Motion is my MAIN trigger by the time i have completed my 4 bus journeys to and from work i feel like ive been strapped to a waltzer for an hour. When i was little i was a terrible passenger my mam used to give me sealegs( showing my age) then in my 20s 30s and early 40s i could go anywhere with no problems…then at 49 years old BAM it all came flooding back same time i got a diagnosis of MAV. If i sat still for the rest of my life i would never be ill…but bored to death. How can moving around cause so much distress??? Ive been on sick leave for 2 weeks (whilst trialing Duloxetine but had a bad reaction to it) and will be going back tomorrow. The thought of the buses, computer, lights, busy environment is making me dizzy just at the thought…a vicious circle for me
And my headaches and neck pain are returning due to the Botox treatment wearing off…24 more days until another session. What a life!!!:face_with_head_bandage:
Jo xxx


#123

Oh wow I had no idea Charli was your daughter :slight_smile: we’ve spoken and connected through face book . She’s lovely ! Wow this condition really is hereditary was this your first time with symptoms ? My whole family has migraine but no one has the dizzy stuff so interesting tho how it runs in families x


#124

Hello @Jojo65
4 bus journeys sounds horrendous - you must be in bits by the time you arrive - then, to have to work when conditions cause so much pain and stress must be difficult - I really struggled when I tried to go back to work.
I have been off work since April - I tried to go back in May, but quickly realised I couldn’t hack it and have been signed off until September. My employer has been brilliant, and because I have worked there for 12 years I have had the benefit of full sick pay for 6 months. I don’t know what I would have done otherwise.
Will you be able to try different medication if Duloxetine doesn’t agree with you? The medication I am on is to stop the migraines happening but I still have neck and ear issues.
Jan xx


#125

I struggle map reading too - guaranteed to make me feel sick after about 30 seconds! Luckily my husband has a good sense of direction most of the time and thank goodness for sat navs! I was never very good sitting in the back of the car either until I realised that if I looked through the gap between the two front seats it helped as I could see where we were going. A bit like focusing on the horizon on a boat I guess!


#126

Hi @Amylouise
Sorry - I have confused you. My daughter does Yoga, but she isn’t Charli -she just sent me a link to Charli’s story on a life loved. I have found Charli’s videos very helpful - her voice soothes me straight away. Funnily enough my daughter and Charli both live near each other so maybe their paths will cross at some point.
This was the first time I had anything like the vertigo with pulsating ears , strange head feelings and balance problems. I had headaches in the past which have throbbed and I have had to take some paracetamol and sit /lie down for a while. I didn’t realise they were migraines but in one occasion the headache/upset stomach was triggered by a loud film at the cinema and I had to go home and lie down. :roll_eyes: xx


#127

If the neck and ear issues stem from the migraine and the preventative works it should, in due course. Stop them too.

@jojo65

Still, at least you’ve proved botox works for chronic headaches. Just a case of getting the injection intervals paced right now I suppose. Must admit don’t see how, if it ‘wears off’, it can stop the vertigo/dizziness that’s constant. Would have thought one would need to have it constant in your system. From exp I’ve found the spacing evenly of the meds dose is important. Tweaking mine has improved things as dramatically as iincreased dose.

When your head will wear it do have a read of Dr Hain’s site regarding women, menopause, migraine/MAV and preventatives. There’s some really informative stuff. You said yr neurologist is young, approachable and helpful so it might give you some clues about what to ask her at next appointment. Dr Hain does’t seem to much favour botox but in yr case you may just have already proved otherwise so that’s a step forwards. Helen


#128

Hi Helen and Jan…i can say without doubt my neck pain and headaches have improved A LOT starting the 3rd week after Botox and have gave me relief for almost 9 weeks…that is a massive result for me as i had daily headache ( not migraine) and neck pain and often ear pain regularly. Then 9 weeks virtualy pain free i have this all written down in my diary…but as of yet no improvement in my dizziness, disorientation, and severe motion intolerance…this im hoping to god will go eventually but i have a feeling im going to need a med added to my treatment for that…but which one??? I cant seem to tolerate any of them!!! Today ive taken Zolmitriptan because i feel like my nose is going to burst i can feel it pulsating like a hearbeat and also a bad head this is how i was pre Botox along with all the other MAV symptoms. First day back at work after 2 weeks sick leave…almost 6 months now in total of lost work altogether and feel it wont be the last.
Jo xx


#129

Hv a read of Dr Hain’s womens business stuff. It would seem to me you might be heading for Effexor if you saw him in US. And, after all the previous upsets, guess you’d be breaking open capsules and counting out the little beads so you could start hyper low and slow or may be neurologist could start you on this new injection. Have a read and then go along suitably armed and see what you can get out of her. Got to control the migraine because the rest is just migraine symptoms and should go,but not before the migraine does IMHO. It doesn’t seem to work like that. Helen


#130

I agree…it doesnt seem to work like that.
Has anyone on this forum got rid of the migraine pain…then the dizzies disappeared afterwards??? Because thats my goal…
Jo x


#131

I’m getting there. My migraine pain (pressure) has come down to mild levels this last month and the dizziness is starting to go down as well. It’s been 1.5 years… I still have a ways to go, but I’m seeing improvements each week on my walks, especially when I go up steps and hills or close my eyes while I walk. I hardly notice the rocking sensation anymore for example, just an overall off balance feeling. And the floaty feeling is less as well. I think as the headache comes down vestibular practice and gaze stabilization is key, at least it seems that way for me.


#132

Hi
Thats my Neuro’s plan for me…eliminate the headache., neck pain and ear pressure and then VRT. I had bliss from 1st week of June until Sunday gone of being pain free but im ready for Botox treatment number 2…hopefully the more i get the more it will build up in my system…sorry i missed what medication you are taking at the minute?? Im still dizzy everytime im in motion. Only sitting and lying down do i get any rest from it.
Jo x


#133

Verapamil, I went from 120mg to 240mg last month and had very large reductions in head pressure. Thinking to go up to 360mg now.


#134

Wow thats great…thats one med i have not tried. Ive trialed Flunazarine which i think is in the same family a calcium channel blocker but to be fair i only took 28 tablets as the fatigue was too much i couldnt get up at 5 30am on them
Jo x


#135

Well ive had 2 weeks of disabling dizziness and and my headaches have slowly been returning on a daily basis with today’s been an actual full blown migraine until i was sick. It hurt from my hairline down to my cheekbones how my nose didnt split open is beyond me and dizziness on top. So i emailed my headache nurse for help. She ramg me this afternoon im going in tomorrow to have a 2nd round of Botox rather than 24th August…lets hope this helps. Ive only been back to work 2 days from sick leave!!! Good job i have an excellent manager and employer
Jo x


#136

Sorry, love, I feel for you. Good luck.


#137

Ahh thank you Emily…i feel sorry for us all suffering with this. How are you doing?
Jo x


#138

Well, I’m having myself a little relapse this week (stress, heat, wildfire smoke). Yesterday I laid about. Today I cried, got fed up and ran it out. MAV doesn’t have my endurance. It can keep up for 2 miles but not 6. It maybe only buys me an hour or two of clear headedness but that’s a bargain I’m willing to take. One step at a time, some faster than others.


#139

Calcium channel blockers like betablockers slow the heart probably why you fatigued. They are apparently widely used in UK for cluster headaches in high doses, 960mg? Max but headache clinics insist on ECG with every increase so surprised they are much used (expense/NHS?). Haven’t seen much evidence of them on mvertigo.org. Maybe they are so successful nobody felt the need to join up. Joke? Helen


#140

That’s what I am hoping!