It’s great that you are able to record in more or less real time your progress. It will surely help others, Is the Aimovig supposed to build up in your system like regular Botox is supposed to do, or is it too early days for anybody to know yet. Helen
What will be interesting to see is if it differentiates between resolving headache and dizziness, or resolved both, but differently.
One thing to bear in mind is that for many people, headache is more of an ‘episodic event’ even if a frequent/daily one, whereas dizziness/imbalance tends to be more continuous.
Therefore, if the dizziness is a long lasting effect of the episodes (one theory I have read) then you would have to get to quite infrequent episodes before the long-lasting dizziness fades.
If you get to both the headache and the dizziness breaking up into separate episodes with something near normality in between, then you are onto a winner.
If you have seen some immediate improvement with few side effects, I would think about persisting for longer to see how far you can get. Many people find it takes months before the drugs they take have a noticeable effect.
- A few weeks into the second round of injections and unfortunately all of the positives I’d gotten have disappeared and my dizziness in particular has gotten significantly worse than it has ever been.
- Had a neurologist appointment today and am making a few changes to my medical regime: im going to continue the aimovig injections for the time being, but am also going to add botox injections, and 10mg amitriptyline again.
Also, I’m going to try DHE nasal spray in another attempt to ‘break the cycle’.
Will Report back with the results of these changes. Hope everyone is doing well.
Sorry to hear the injections aren’t helping as much as you thought they might. Lots do seem to find the Botox helpful but I’d say Ami must be pretty much top of the tree for MAV. You’ve tried it before? It seems to work for most. What happened? Helen
I didn’t share my Ami story as I didn’t want to scare others on the site from using it, and I know this side effect is very rare, but I began to have hallucinations when I reached 70mg. Spiders and writing on the wall when I woke up every morning, even when I would fully wake up. Going to stick to a lower dose and hope that side effect doesn’t materialise this time around, as it was quite disturbing.
Oh! Very considerate of you to keep that to yourself! I’ve heard if it causing auditory hallucinations before but not visual. Ami’s pretty powerful stuff. Little pill, big punch. I suspect it’s something to do with its anticholinergic properties. Noritriptyline I’m told has much less. Helen
Yep those were my thoughts exactly. I’m considering trying a low dose of nori along with the aimovig/botox if the ami causes problems again.
Best wishes and hope you are well,
I’d go straight for the Nori myself because if an ultra low dose doesn’t work you may feel the need to go up and you already know your top Ami dose is way under the 100mg maximum for MAV but then again they probably don’t call me ‘chicken’ for nothing. Helen
That’s a good point. I’m going back to the neuro in 4 weeks for the botox session, so I will re-assess then.
Interesting, I saw a spider on the wall once when I was on Paxil. It was my only hallucination that occurred. I actually think I was so far behind sleep from MAV that maybe that’s what caused it, but who knows?
3 Month Update:
I am now on 15mg amitriptyline, which seems to have given me a slight reduction in the severity of my headaches, though no effect on dizziness
It seems the AIMOVIG has done very little for me. Any slight improvement that I might observe could easily be explained by the natural ebb and flow of my MAV. I need something to make a much more significant improvement, and therefore think it is quite likely that I will cease using the drug.
I have an appointment to receive the botox injections on tuesday.
I’m also going to ask for a daily tablet to take that helps specifically with dizziness. For this I am leaning towards Cinnarizine.
- Aimovig was not helpful for either my headaches or constant rocking.
- I have officially failed 7 preventatives now, and am looking towards more drastic measures to gain relief - e.g. botox (already booked in), nerve blocks, TMS therapy, drug infusions in an in-patient setting (DHE, Ketamine), applying for medicinal cannabis (very difficult to get in Aus).
- If anyone has any advice or perspectives, I am always open to hearing them
Best wishes everyone,
Seems Amitriptyline is not a complete failure? I’d persevere and increase the dose a bit. My dizziness left me around 20mg (though it never got rid of imbalance but I’ll take that)
Yep definitely going to keep on with the amitrip while I do the botox, i was thinking of increasing to 20 too.
It’s tough because I don’t want to muddy the waters as to what drug is causing the improvements (should significant improvements ever occur) but after 18 months of trials I am willing to make that sacrifice in hopes of achieving a meaningful change in my symptoms (i.e. a change that will reduce level of disability)
what about venlafaxine? i think you mentioned early that you have not tried it. Keep it up, you will get better. Sending you healing thoughts.
Good point. Perhaps I should try that along with the Botox. A one-two punch.
Thanks so much for the well wishes, consider them reciprocated
Woah. No. Hold up! Get to a decent Ami dose before discounting and jumping meds again. 15mg is a tiny dose so no wonder it’s not helping much! And bear in mind Venlafaxine is a much more difficult drug to get off of. These things are not sweets!!
Hmm. I see where you’re coming from re: Ami. I have gotten up to 70mg on it before but had to discount it due to side effects.
In any case my plan going forward would have been to combine both ami & effexor (and Botox / abortives). I understand that this seems a little drastic and will make teasing out what is actually helping difficult. However, I’m at the stage where enough single-drug trials have been utterly useless that I am gearing towards a poly-medicinal approach. Thoughts?
Or I could hold off on effexor for the time being and just focus on: 20mg ami, botox, and a dizziness abortive i could take daily (such as cinnarazine)?
I’m trying to be strategic about my approach. However, I’ve just had so little success so far with the standard “one drug, three months” approach, you know?
Ah, I see, you were coming down. 70mg is a bit on the high side though … what was the worst side effect at 70mg? I found slow bowel the worse thing. How long did you stick at ~30mg?
The side effect that made me give up on ami was daily hallucinations as i was falling asleep (saw fireworks in the dark bedroom) and early in the morning after i woke up (saw spiders crawling and hieroglyphics / other strange writing in the light bedroom).
These side effects began to appear at around 60mg, though i continued to increase in hopes that they would subside anyway. Prior to this I had been at 25mg for 3 months and 50mg for 3 months.
At the time Ami was the first drug I had tried, and since I couldn’t find any info about these hallucinations online, I decided to try a different med! I’m not sure I would have given up so easily on it now.
I do believe Ami helps me a little bit with QOL at the lower doses, and am hoping to build on that by adding additional meds on top!
I don’t think 15mg will be enough … head up a little on the Ami, then see how you feel after a month or two.
These are strong psychoactive drugs … adding another med is going to mess with you too, guaranteed.
But of course you need to explore what works for you. Good luck!