Recovery?

No worries, ask away… that’s why we are here, to hold each other up.
I started at 10mg (cutting pills) and was on that dose for about a month. (This was MY doing since my dr never wanted me at 10mg, but I was scared). My Dr frustratingly said 10mg is candy for MAV and I needed to titrate up immediately. So, I went up 10mg every week until reaching 50mg where I am now. Relief is gradual and no symptoms just go away during this time, but become less and less debilitating. I noticed most progress beginning at 30mg I’d say. I would say that by 8-12 weeks in, I had huge relief and could honestly say the symptoms didn’t control my life anymore. I now am 5 months in on the 50mg and hover around 80% better, some days even 90%!

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Improvement with MAV is, almost always, very gradual. Neither is it continuous once/if it does start. Much a question of ‘one step forwards, two steps back’ with a baseline underneath gradually becoming more constant. Being older and having had the condition some time will both retard progress. May also mean increased drug dosage or even combination of several. ‘Low and slow’ is way to go. Better than side effects causing people to quit too soon. I’ve read of people increasing Ami on a monthly basis, not weekly if she’s very sensitive or scared if meds. Each increase can exacerbate symptoms. I sense your desperation to get Mother well again but you do need to accept it is going to take some time. If the anxiety is health related it should reduce as symptoms do. Sometimes just taking drugs helps because it fortifies the belief one is back in control and doing something positive to improve one’s situation. Helen

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That’s wonderful. I hope she can also be where you are at soon! :pray::angel:

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Yes I am so very desperate! While I realize now this will be a LONG road, I just would like to see SOME SMALL incremental improvements soon… Even if it’s like 5-10% just so I know she is getting some relief and I think that alone will fuel her motivation to improve.

I truly appreciate each and every response! Thank you!

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10mg of Ami gave me ~50% improvement in days and ended the migraines. 20mg was a real game changer and restored my ability to watch television and use the computer comfortably (and for hours)

If you get the right med they can be ‘transformative’

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Well, you just might be lucky. I hope so. Just don’t be too disappointed if it doesn’t happen quickly. You’ll have to read her some of the Success and Positivity stories. With MAV it’s helpful if one is good at ‘talking oneself up’. Perhaps you need to adapt this to your situation with Mother. I believe she had success with Ami before so she knows what is achievable. Maybe give her a reminder. Helen

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By any chance did it cause insomnia?!?

IIRC sometimes it disturbed sleeping patterns but usually it made you more sleepy not less. Extremely rarely I would get a vivid nightmare.

Ya… Apprently my mom couldn’t sleep at all…

6.25mg x 2 days — she said slept some what better wo other noceable side effect so we went up to 10mg last night and no sleep … ? So confused!

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This may have just been a bad night. We all get them, with or without MAV or medications. I would assume it was a fluke rather than the medication. A lot of people take Ami in the low doses to get a good nights rest,everything I’ve read it makes one more tired. I rest better than I have in years since being on it and am fortunate that I never feel groggy the next day, that is an affect some people get. I would keep going!

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Thank you for ur reply. After speaking with my friend (neurologist) and to my mom (who looks like a total zombie right now), we decided to keep going on the 10mg, at least for tonight again. Exactly like what u said, We are attributing the insomnia to her increased anxiety about taking a larger dose and the increase in dizziness/symptoms she feels today may be due to lack of sleep (?). Some commented that it feels worse before getting better (?) I hope that may be the case. On 6.25mg she said she actually felt a “bit” better but I wonder if that was placebo or just the fluctuating course of MAV rather than ami (?). Anyways, our anxiety lvl is unbelievably high at the moment - my mom really only has my sister and I to help her and every day passes with her being this way breaks my heart into tiny pieces. I pray that soon she will get her breakthrough.

Thanks for ur kind responses and encouragements.

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Sounds like your mom is willing to keep going, proud of her. Healing from MAV takes an incredible amount of fortitude, when we are at our weakest.
Lots of people find that the symptoms become quite aggravated within the first weeks of medication. Mine were mildly aggravated, as I always tell people it was no worse than any other terrible day I was having so I kept going. It almost feels like the MAV just gets really p*ssed off and wants to flex its already hideous tentacles of evil even more.
I’m so sorry for you to have to see your mom suffering, all of our loved ones have to suffer for loving us so much and feeling so helpless. Thank God she has you and your sister, I admire you both for being so loving, kind, patient and dedicated. Stay strong and when you can’t, you can always come here and we will hold you up! :sparkling_heart:

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Agree with her. Tell her she is looking a bit better. Bolster her up to keep going. Positive attitude will pay huge dividends and once she starts sleeping, she’ll feel so much better even if the MAV hasn’t started subside yet. Helen

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I realize I responded to you on a different thread. How are you getting along on nortriptyline of 10mg? It’s been only few days on meds for us so we are not sure where this is going at the moment. Of note, some side effect may be subsiding (?) gotta still see i suppose.

Thank you. I am trying to encourage her at the same time not push her TOO hard. Its a balancing act, BUT of course, we are all eager for her to see SOME relief, even if it is just slight, just to give her some hope and keep going. I feel like if she saw some benefits (albeit however small), if she was able to perceive it, she will feel more motivated (?).

Thanks for your encouraging word, we are all high alert anxious right now for this to work :cold_face:

@Naejohn : i just realize I can replay by using the @ symbol. Thanks for your encouragement, I told my mom there are people around the globe with similar condition commenting and rooting for her - which made her smile. So far on day 3 of ami at 10mg (day 5 of ami overall), her side effect of insomnia and added dizziness seems to be ever so slightly improving and she has dry mouth which was to be expected. I know it is way to early to tell if this will work for her, but I am pray and hoping that this is THE drug for her. I hope with each day the side effect will lessen so she can evaluate if there are any benefits, no matter how small they may be, to give her the courage to go on and possibly even, increase the dose down the line (if needed). I secretly was hoping she would get the type of response @turnitaround had lol but that perhaps is not the road we are on. Thank you for your kind words and responses, it’s been very helpful.

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