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I just injected 140mg Aimovig

#1

I’ll update the forum on this fresh thread of any progress (or lack thereof) that I see from here on out.

Injections were relatively painless, although my thigh muscles (the area into which I elected to inject) were very sore from about 30 mins afterwards.

Hope everyone is making progress. Best wishes,
D

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#2

Best of luck with this, fingers crossed it helps with your recovery :crossed_fingers:

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#3

Thank you very much :slight_smile:

I think it will be interesting for the forum to see how Aimovig affects someone’s dizziness and tinnitus. Most online anecdotes about Aimovig’s efficacy focus solely on headache frequency and severity.

I myself have not seen anyone with 24/7 vestibular symptoms talk about their experiences trying Aimovig. I feel I have a unique perspective to offer, since I have both the 24-7 rocking boat sensations AND severe daily headaches, and will be able to test whether Aimovig helps either or both of these symptom-sets.

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#4

This is exactly what I’m so curious about. I’m on effexor currently and it’s been super in terms of daily pain and headaches and very good on vest but I can’t shake the imbalance, wobbly walking sensation so my neuro would be looking to move to injections at future point when available in Ireland which is about 2 years. I really hope it can help you with vest issues it’ll give hope to the rest of us. Keep us posted :grin::+1:

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#5

One brave ‘guinea pig’, eh. Well done and Good Luck with it,

If it removes all your symptoms I wonder if that proves anything like whether the vesitbular symptoms are migraine. I guess one would need somebody who only gets the vestibular symptoms, ie vertigo but not headaches to try it to prove the vestibular stuff does really stand in place of the headache. That would be somebody like me. Not that I’d be volunteering! Helen

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#6

Go on volunteer!!! Ha ha :grin:

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#7

Good luck with it! My doctor told me (I think) that Aimovig shows results within the first month, and that results seem to plateau at three months. I hope to be starting Aimovig soon too, though at the lower 70 mg dose.

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#8

Hi. I am on my 3rd injection of Aimovig, 70mg. I have 7-9 classic migraines per month (sharp, throbbing pain, nausea, photophobia, etc) plus daily MAV symptoms (bobble-head/disequilibrium, nausea, phonophobia, oscillopsias, etc). To round out the picture, I have both MAV and bilateral SCDS, have had a brain aneurysm (it was clipped pre-rupture), suffered multiple head traumas (moderate-severe concussions) in the military and had a skull fracture among other injuries in a motor vehicle accident.

I’ve tried all the usual medicines over the years and not had any luck. Good luck that is. I am very sensitive to meds and usually have all the weird, odd and rare side effects so was very wary of trying Aimovig. (Plus, no insurance & am on limited income.) My neurologist convinced me to try it and arranged for the first two injections to be free from the company.

I didn’t notice anything at all - good or bad - for four weeks. Then, 2 weeks into the 2nd month, I noticed my migraines had been cut in half.
One week later I had a bout of bobble-head that wasn’t my usual blip (a blip to me is 30 seconds to 10 minutes) of rocking or swaying - it lasted 3 hours and I had to use a walker. I was at home thank goodness. Didn’t fall. Just glommed onto the hallway wall until I could get to the walker. I don’t have BPPV and this 3 hour episode was just very intense swaying/rocking/bobble-head. There was zero spinning, either inside my head or in my environment.

After that episode, I have noticed that the bobble-head is ramped up. If it used to be a range from 2-5 on a scale of 10 with 10 being the worst, then it is now 4-7. A few other symptoms have increased as well - photophobia, the oscillopsias seems stronger, phonophobia, the overall fatigue and brain fog and a few more of my usual MAV suspects. I had another swaying bout but that one lasted only 90 minutes. Again, it happened at home and I used the walker. Did not fall.

After the first bout, I purchased a set of nice walking sticks. Now I keep one in the house and one in the car for moments when my bobble-head is closer to a 6 or 7. They help. (I did get the ones with shock absorbers & that bit of extra is very helpful.)

My 2nd month on Aimovig passed with only 5 classic migraines. That is still a lot since each one costs me at least 2 days from the onset to pain meds to the postdrome period where I feel wiped out from both the brain changes and the meds. But, 5 is much, much better than 9. While the MAV symptoms are still heightened from what was my normal level I have decided to continue with the Aimovig to see if they ease back down. If they don’t I will have to decide if less pain but more MAV is worth it. Or, of course, the cost could make the decision for me.

Re the cost: I have room on a card to purchase 2 more month’s worth if need be. However, I am hoping the VA will start paying for the drug. At the moment the reason (excuse) they won’t is: “it’s too expensive”. I could also apply for a full year’s worth free through the company that makes Aimovig but after reading how much of your privacy you give up to apply I am holding off on mailing that application in.

I hope this info is helpful. I wish everyone trying this or one of the other new injectables good luck.
Molly

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#9

Great to hear about your relative success with the Effexor. I haven’t tried that yet, so could be a possible adjunct therapy along with Aimovig (if Aimovig happens to help).

Have you tried VRT? I wonder if now that your migraines and rocking are more controlled that it may help your remaining balance issues? Just a thought, as I tried VRT myself but my migraine pain and other neurological symptoms were way too severe to follow through with the exercises.

If you or anyone else are interested, I would be happy to upload the exercises they gave me at a private Dizziness Clinic I attended after they diagnosed me with MAV.
Best wishes, D

#10

I don’t know about brave, I’m an absolute wuss when it comes to needles :joy:.

Indeed. In a more MAV-sensitive world, we would have clinical trials testing the efficacy of all of the migraine preventatives in a) a pain only group, b) a vestibular issues thought to be from migraine only group, and c) a vestibular issues WITH classical migraine pain group.

One of the great values of this forum is that one can read as many anecdotes as possible and make an informed decision based on the successes and failures of those with similar symptom sets as them. I.e. it serves as a kind of quasi clinical trial of the experiences of those with debilitating vestibular symptoms which have been diagnosed as migraine-related.
Big shout outs to @turnitaround for facilitating what is essentially a crowd-sourced solution to a gap in the scientific literature.

Best wishes, D

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#11

Thanks alot :slight_smile:

My Neurologist said exactly the same thing. If you do indeed trial Aimovig, keep us all updated with the entire process!
Best, D

#12

Great to hear you made some gains in the pain side of your migraines, and interesting about your vestibular deficits.

I wonder if you could perhaps include another drug such as cinnarizine, known to be very effective for the vestibular aspects of MAV (as well as migraines in general), alongside your Aimovig.

Given the severity of your condition, perhaps using two injections may help your symptoms further also. Is the decision to use 70mg rather than 140mg a financial one? Where I am it costs the same for two injections a month as for one. In any case, fingers crossed that this drug is put on the PBS’s around the world as soon as possible; the exorbitant price is really not sustainable for many people, particular those debilitated with illness who already have to see specialist doctors.

Best wishes, D

Ps. I’m very sorry to hear about all of your trials and tribulations and really hope your luck starts to turn around soon!

#13

Haha, love it! thank you.

#14

@d.powell are you in the uk or elsewhere in the world?

Has anyone been given Aimovig on the NHS?

#15

I’m in Melbourne Australia

#16

Ah ok. Good luck with the Aimovig. I hope it helps.

#17

Thank you so much! Best wishes to you as well

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#18

Hi, yes future vrt is on the list at some point. I did vrt for 12 months and kept a copy of every exercise I was given so if I go back it’ll be for one session initially so physio can assess me and tell me which exercises would move me forward. Thanks very much for the offer, appreciate it. E

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#19

D,

Hi. It’s best if I trial one medicine at a time given some of the very odd reactions I’ve had over the years. If the Aimovig works out I may consider adding something else but that is months away.

I could not afford 2 injections per month. Here (Midwest in the United States) one 70mg injection costs $597.00. I was told at my pharmacy two would simply double the price. That was 3 months ago so that policy could have changed by now. I don’t know. My neurologist wants me to try 70mg for 6 months and then we’ll look at all the data and decide what to do. If things worsen significantly I won’t continue with it but if it is a trade off with a slight increase in MAV symptoms but less pain I may continue it. If the increase starts to include more of those bouts of bobble head that require a walker though I seriously doubt I would continue the Aimovig. Time will tell.

Thank you for the well wishes :slight_smile: . I hope things work out for you as well.

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#20

1 MONTH UPDATE:

I’ve just come to the end of the first month of being on Aimovig, and am due to inject again tomorrow.

The Good:

  • A mild but definite reduction in the headache aspect of MAV for about 2.5 weeks immediately following the injections. I don’t feel great by any means, but the worst headaches I get got milder, and best my pain got became even better.
  • The reduction in head pain allowed me to get back into some light reading and light exercise which I hadn’t been able to do in at least 12 months. This made me feel a little better mentally and gave me some hope for eventual recovery.
  • Virtually 0 side effects, and I’ve had severe side effects / worsening of the underlying illness from virtually every drug I’ve taken, so take that for what it’s worth.

The Bad:

  • Little to no impact on dizziness or tinnitus thus far
  • My legs hurt quite a bit for a few days after the injection (this was pretty easy to cope with though).
  • About a week before the second round of injections were due, my headaches seemed to return much closer to their pre-Aimovig intensity

Conclusions:

  • I’m hopeful that if I continue with the injections, I will see even more progress. I’m going to give the Aimovig at least 2 more months, before deciding whether to a} add botox on top of it, b} abandon it, or (though this option seems too good to be true) c} feel satisfied with just the help that Aimovig is giving me and continue it as a monotherapy.

Best, D x

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