Update on Nori (finished my first week on 20mg)

Hey everyone, I feel like such a bug here, but my doctor isnt a lot of help. He wanted me to try 20mg and this past week I had a follow up about my MRI (which thankfully came out ok) he said if I can go up to 25mg after a week to do so. The thing is I have been on 20mg for 1 week. I was on 10mg for 2 weeks. I dont know whether it is helping or not. I can definitely say my ear was less full and head was less heavy, but my ear has been more full the past couple days for some reason. My head is less heavy but I can still sort of feel it. Since I upped to 20mg the blurry vision I get in stores is fading, but I am still dizzy most of the time without my ativan. I am also so tired on 20mg. The drunk hungover feeling faded after 2 days but I am still so tired and unmotivated the next morning, my limbs feel weak and I like to go to the gym a couple times a week, running has been so hard on my knees lately. If I go back down to 10mg Im sure my vision will be more blurry again but I will be less tired. Should I try and go up to 25mg like my doc suggested? I thought I knew right away that this was working out for me, but after 3 weeks on this, I would think it would be doing more than it is. I dont know what my docs next plan is if this fails but my GP said she can prescribe me Effexor (for anxiety and depression) but I of course would be hoping that it would also work on MAV. Also since upping the Nori my headaches have increased, which is weird, I thought it was supposed to help headaches?

Hi
A lot of people report they feel worse on nori until they adjust to it. You could try to wait it out or try for 15mg if you dump half a 10 mg capsule. Effexor has been shown to be effective as a migraine preventative, so it would be a good next step if you feel the nori isn’t doing enough. Do you get super tired right after you take it? if not, you could try splitting the dose am/pm. When I took ami I was told to take it around 6pm since the fatigue didn’t kick in for a few hours, and I would be less tired in the mornings.
Kelley

Thanks Kelly, I did a search on the site and I see that its common for a lot people to not feel better till they get to 50mg or more. I took the 25mg last night and surprisingly I was less tired then when I take the 20mg? I usually take my dose at 7:00 pm it does take a couple hours to get me sleepy, but I think Ill try taking it at 6pm instead and see if some of the grogginess the next day fades. My husband has been off all weekend, and today for Labor day so I had lots of sleeping in this weekend, which always makes me feel worse. I love sleep but hate how dizzy I am after getting too much. I will call my doctor tomorrow and ask what his plans will be for me titrating up. It seems like he just says “how do you feel” …“ok go up to X amount” I would like some sort of a plan… :?

I just started my 50mg of nori on Friday. What I do is take 20 mg (2 - 10mg capsules) at dinner time (5 or 6 pm) and then the balance at bedtime around 11 pm. I don’t feel as groggy in the morning this way.

I’m not sure, but I think that the norephinephrine, which is a stimulating neurotransmitter, starts to override the antihistamine properties…
Nori doesn’t hit the serotonin as hard as some others…mainly NE…
Kelley

I didn’t feel significantly better on the Nori until I got to 40 mgs, which took me awhile. At first I got more headaches too, but after two months or so they almost entirely went away. Unfortunately I can’t tolerate the drug so I’m going off of it right now, but I’d say don’t give up on it yet! It took longer than three weeks to see a difference. As far as grogginess goes, I never had too much trouble, so I can’t help you there. Hope it improves!

I am also getting frustrated but I think it is unrealistic to c effects within weeks. I am up to 30 mg over a period of 6 weeks. My headaches have got worse but the horrible visual constant imbalance I tolerance to head movements etc etc seems to b improving. It is like migraine headaches have been hiding under a veil of 24/7 dizziness. I have suffered constantly for 4.5 years and didn’t believe it cud possibly b migraine but I am beginning to believe!

— Begin quote from “badger2007”

I didn’t feel significantly better on the Nori until I got to 40 mgs, which took me awhile. At first I got more headaches too, but after two months or so they almost entirely went away. Unfortunately I can’t tolerate the drug so I’m going off of it right now, but I’d say don’t give up on it yet! It took longer than three weeks to see a difference. As far as grogginess goes, I never had too much trouble, so I can’t help you there. Hope it improves!

— End quote

Im glad to hear you got better on Nori, what is the reason you cant tolerate the drug? Did you ever get very tired while taking it? I had my second night on 25mg last night and felt really tired last night, hoping to see a little more change than I had on 20mg.

— Begin quote from “Becks”

I am also getting frustrated but I think it is unrealistic to c effects within weeks. I am up to 30 mg over a period of 6 weeks. My headaches have got worse but the horrible visual constant imbalance I tolerance to head movements etc etc seems to b improving. It is like migraine headaches have been hiding under a veil of 24/7 dizziness. I have suffered constantly for 4.5 years and didn’t believe it cud possibly b migraine but I am beginning to believe!

— End quote

How long have you been on 30mg? Im so sorry you have been suffering so long. I have been dizzy since beginning on June and it seems like and eternity already.

I hope you all feel relief soon. Feeling dizzy is the absolute worst. Even a couple of weeks feels like forever and it zaps you of all energy and coping mechanisms.

Remember that there are lots of other meds out there to try, so don’t give up if these end up not being the right ones for you. I tried two SSRIs but didn’t find my drug until trying topamax.

— Begin quote from “Anne”

I hope you all feel relief soon. Feeling dizzy is the absolute worst. Even a couple of weeks feels like forever and it zaps you of all energy and coping mechanisms.

Remember that there are lots of other meds out there to try, so don’t give up if these end up not being the right ones for you. I tried two SSRIs but didn’t find my drug until trying topamax.

— End quote

Thanks Anne, Im so glad you are doing better on Topamax! I had a hard time starting up on it, and I wish so bad it would have worked out for me. What dose are you on and are you experiencing side effects?

— Begin quote from “mommyrebecca919”

Thanks Anne, Im so glad you are doing better on Topamax! I had a hard time starting up on it, and I wish so bad it would have worked out for me. What dose are you on and are you experiencing side effects?

— End quote

Thanks, I’m just hoping that this feeling continues and the Topamax doesn’t decide to poop out on me! I’m at 100 mg a day (50 mg in the morning and 50 mg at night). I don’t have any side effects that are too bothersome. I sometimes have difficulty finding the word(s) I want to say, but not too often and carbonated beverages taste awful! But that is it for the most part. I sometimes get tingling in my feet, but only if I sit on them funny if I’m on the floor playing with my kids for long periods of time or something like that. It’s all very tolerable.

Hi Rebecca
I took 10mg week1
15mg week 2
20mg week 3/4
25 mg week 5
30 mg week 6
I wAs so dizzy for the first 3/4 weeks but am seeing small improvements. I do get dry mouth and eyes etc but it us nothing compared to the symptoms I have with mav. do u know what dose your neuro wants u to get to.
Becks x

— Begin quote from “Anne”

Thanks, I’m just hoping that this feeling continues and the Topamax doesn’t decide to poop out on me! I’m at 100 mg a day (50 mg in the morning and 50 mg at night). I don’t have any side effects that are too bothersome. I sometimes have difficulty finding the word(s) I want to say, but not too often and carbonated beverages taste awful! But that is it for the most part. I sometimes get tingling in my feet, but only if I sit on them funny if I’m on the floor playing with my kids for long periods of time or something like that. It’s all very tolerable.

— End quote

Sounds great Anne! Im happy to hear you are tolerating it well. I had increased anxiety that I just couldnt keep going on it. I was really hoping it would work, especially since it promotes weight loss and not weight gain like so many of these drugs do.

— Begin quote from “Becks”

Hi Rebecca
I took 10mg week1
15mg week 2
20mg week 3/4
25 mg week 5
30 mg week 6
I wAs so dizzy for the first 3/4 weeks but am seeing small improvements. I do get dry mouth and eyes etc but it us nothing compared to the symptoms I have with mav. do u know what dose your neuro wants u to get to.
Becks x

— End quote

Hi Becks, Im not sure where my doctor eventually wants me, it seems like he waits to see how Im feeling and if Im not feeling good enough he increases. I have been reading through Dr. Hain’s website and see that 50mg is the typical dose for migraine with Amitriptyline and Nortrtiptyline, so Im going to bring that up and see what he thinks. My doctor definitely doesn’t know enough about MAV, but Im glad he is trying to help me at least. So far I have done
10mg weeks 1 and 2
20mg week 3
25mg week 4(tonight I took 20mg though because I need to be up early and don’t want the grogginess)
What dose will you get up to?

I started the Nori on the 1st March at 5mg and have been going up in 5mgs every 3 to 4 weeks. I’m now at 60mg and going up to 65mg in a couple of days. Only when I hit 30mg did I start to really notice improvement and I seem to get better each time I go up (as in I’m able to cope with more things and do more stuff like I used to before). I’m still a long way from 100% but I would say I’m at 75% most days.

Working 3 days a week is still taking it out of me and there is no way I would be able to do the job I used to do but I’m now coping a lot better at work that when I first started back in early June. Much better.

Improvment with this illness will unfortunately be very slow and you will have to be patient. It sadly takes a long time, but when you hit the right dose of whatever med you’re on, hopefully it will be like flicking a switch!

Stay strong.

Well I woke up today with a real migraine headache, my neck is so sore and parts of my face are tender to touch, not to mention the killer headache that is not going away with Motrin. I have had it all day, and my damn blurry vision is back :frowning: I called my neuro and left a message asking him if I should go back down on my dose or what to do, I took a fiorcet pill to help with the headache and feel probably worse. It has caffeine so Im shaky and more dizzy. I hate to make a trip to the ER but this headache is killing me.

Killer migraine try imitrex? or naramig via dr(to see ifok with current meds) to have in the house for killers take at first sign of a biggy. Also sometimes 20mg stemetil can help…

Hi Rebecca -
Do you have the pulsating headache or ice pick in the eye sort of pain?

— Begin quote from “theogdenmancan”

Hi Rebecca -
Do you have the pulsating headache or ice pick in the eye sort of pain?

— End quote

Its a pulsating kind, I had some pain behind my eyes earlier in the day but it just evolved into a huge headache, my neck is killing me too.

My neuro told me to go back down to 10mg, I can only think that maybe my body is not handling the dose increase to well. Maybe I did it too fast? I feel awful right now. I know I shouldnt take too much Motrin due to rebound headaches but I just took another 600mg for some relief. Im pretty nauseous right now too, its like my whole body decided to fight against me today. Hoping tomorrow I wake up feeling less hungover and this headache is gone!

Don’t be surprised if you feel drunk after a migraine - those are called migraine hangovers. My favorite is the brain fog/cognitive impairment. Usually during what I call the “ice pick” in the eye pain/throbbing stage is where I get super nauseated and where I beg to throw up because that pain goes away and then moves onto the classic pulsating headache. I really hope you find a treatment soon, I seriously hate coming on this forum to see normal people struggle with such an incapacitating condition. Sending well wishes your way :slight_smile:

Nick

ps. i’ve also found that those who have MAV that also have had a history of headaches are more likely to respond well to medications. Just something I’ve been reading, still not sure if that’s true or not

Thanks Nick, I do have a history of headaches, but never what I had today. I never had nausea accompany them either, plain awful! Thanks again for the well wishes!