hi
following on from my other post, those of us who are on meds; are we meant to reach a point where we are 100% pain/problem free? - i ask, as i am on 40mg of nori, and when i am not in the office/not hormonal, then i am really good on the current dose of drugs, so should i just be happy with this?, and accept that when in the office etc i am more likely to have headaches and be more dizzy? or do we just keep increasing the amount of drugs so that we are 100% all of the time (hopefully)
obviously when i am not at work etc, i am happy just to take 40mg of nort, but it doesnt seem to cover all the triggers whenn at work - anyone else have this problem?
I will never be 100% I think Ive accepted that two months ago I couldnt walk seriously could not walk across the room without severe disquellibruim (SP?) for me I would accept work makes you feel worse and that may or may not change in future.
Without meds I think I would not be here by now Im happy to be 75% better I think it or depends on what your aiming for for me I accept I wont be 100% it took a long time to come to terms with but Im a whole lot happier now I have x
PS Ie worked most of the time Ive had this and I dealt with it I always felt worse at work but got used to it as my new normal
I’m on 70mg of Nori and I am probably at 90% when I am not at work and I’d say 80% at work. I wonder the same thing… should I want more or should I just be happy with where I am now. Looking at my life when I had my first episode from this dreadful condition and looking at it now I am grateful to be where I am. I am curious to see if anyone feels they are at 100% with meds.
we also have to keep in mind that if there are those who feel 100% perfect with their meds, they may not have the need to post on this forum- I would like to think there are some out there though!!!
Trish that would be amazing I just don’t see it for myself it’s gone on too long never been 100% in three years if it happens though I would be the first to post about it x
Brian - can i ask how long you’ve been on the nori to get those effects? to me that sounds like a dream!! I’m about 40% everyday at the moment. I’ve only been on 20mg of amitriptyline for 4 days; but i’ve been on ami now for 2 months. No changes yet, if anything i feel a bit worse!!
hi =- been on nori for about 6 months i think, slowly increasing from 10mg, now up to 40mg - currently have a slight relapse but wondering if its just a post christmas thing…
HI,
Some doctors have said that a 50% reduction in symptoms is considered a success. I say BS. If you have to live with this, I think we always want to be “normal”. I have about 90-99% most days due to the meds I take. I don’t really follow the diet, since Itried it before and noticed no difference.
hi =- been on nori for about 6 months i think, slowly increasing from 10mg, now up to 40mg - currently have a slight relapse but wondering if its just a post christmas thing…
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Thanks Brian. I think perhaps i need to be more patient. I just feel so crap, it’s really starting to get me down!
I was wondering- do you have to take Klonopin on a daily basis in order to feel good? What % would you be without it? The only reason I ask is that benzos can just stop working (like xanax did for me)- have you had this happen at all?
I was also wondering if you have flown with MAV before? If so how was it?
I thought I remembered you saying that you were feeling a lot better before- I think you were on 15 mg of Ami right? Are you feeling worse now that you raised the dose?
I think a 100% recovery is unlikely for the majority of people, on the basis that for other forms of migraine (e.g. the traditional headache without aura type) it’s unlikely any medication will cure them, but instead (when someone finds the med that works for them) it will reduce frequency and/or severity of attacks. Therefore to me it would seem sensible to expect medication for MAV to improve quality of life by also reducing severity/frequency, rather than expecting a total cure. Having said that, migraines do vary over people’s lives (e.g. I’ve had migraine headaches from my teen years, but only had vertigo for the last few years) and some people find they only have them for a particular period of time, so presumably some people will get lucky and MAV will totally resolve (and this may also happen even without medication for some).
So, being realistic, I hope for an improvement when I use medication, but I don’t expect to be entirely free of MAV, in the same way I have never been free of migraine all my adult life. However, I am much better and function at 95%+ almost all the time now. But I will never have a whole month where I don’t have some days where my balance feels a bit ‘off’ (it always does due to hormones!) or where I don’t occasionally get feelings like I am falling when I am sitting or standing still. On the upside though, I am able to work full time, and do nearly everything I used to do. Sometimes it’s just a bit more difficult that it used to be.
Good luck with your medication. I know I’ve not really answered your question, but it’s very difficult, as I think I have probably accepted my new ‘normal’ as similar to the level you find yourself at. But it may be that with a bit higher dosage you could get better than that? I suppose there might be no harm in you trying a higher dose?
I thought I remembered you saying that you were feeling a lot better before- I think you were on 15 mg of Ami right? Are you feeling worse now that you raised the dose?
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HI Sarah, yes i was feeling a bit better on 10mg before i upped to 15 and now 20 -i’ve just been getting worse. :roll: