Have been on 10mgs. Nori for 5 nights…with everyday getting worse. My dizziness increases each day along with everything else. I’ve been getting by only with a little help from Klonopin to dummy down my brain/ears/dizziness. It’s hard to think of increasing my dose when I’m obviously worse (symptomatically) on this drug. How long should I keep muscling on with this drug before I call it quits? Is there a “Nori. Hump” that I need to get over before I feel better? Is it “normal” when trialing tricyclics and SSRI’s to get much worse before you get better? I can handle the other side effects from it, but the increased dizziness makes me think that maybe this is hitting the wrong nuerotransmitters or what??! This is the way I felt when I tried the Zoloft too. (FYI…still on the Verapamil too which got me to about 60% functioning, but doc added the Nori. to get me even better.)
HI Pink - I’m not familiar with either med (never taken them), but it’s probably best to contact the doctor ASAP to report the effects in order to get the doctor’s feedback. You obviously have the option to stop taking the new med right now (which is probably what I would do), and should follow your own instincts of what is best for your own functioning. Others on the forum will have more knowledge about combinations such as these, and these meds in particular.
Sorry for all your struggles with trying to improve… meds can be challenging.
I’m not sure about nori but when I started on Ami, my doctor said I may get increased side effects like bad drowsiness and light headedness for two weeks and to try and get past that point to see what it’s like once the side effects settle down. However I think if it’s making the MAV worse and intolerable then I would recommend speaking to your doctor about whether they advise coming off Nori asap and possibly trying something else.
I managed up to 20mg of Ami with limited side effects and no improvement of the MAV. As soon as I hit 35mg, the MAV got a lot worse! I waited 3-4 weeks to check it wasn’t me getting used to the higher dose and then went back to my doctors who took me off Ami and gave me Serc instead
is the Serc working?
I have found the meds that have helped, helped rather quickly with minimal side effects. When it was wrong…it just kept getting worse. When I asked Dr. Hain (while starting Effexor) if I was going to get worse before better, he said, NO< just better…well I didn’t so I scrapped it after 3 weeks.
Ami was okay for me except I would get woozy after taking it, but slept through it…Cymbalta caused an increase in anxiety to a degree, but responded well to a small doze of Klonopin…so I was able to keep it up and work from 10mg-50mg which I’m on now. I just increased my dose from 40 to 50 and had no side effects at all…
Hi, like Gail says, I would check with a doctor to get some reassurance on this. But personally I would always give a medicine a trial for at least a couple of weeks or so, as my past experience has shown that I often seem to get side effects that settle down once my body gets used to the new medication.
— Begin quote from "rockyksmom"
is the Serc working?
— End quote
It’s difficult to say really. Since gradually dropping the Ami and increasing Serc or non branded betahistine up to 16mg, the MAV improved back up to my original level of dizzy. Not completely gone but much milder and tolerable.
What I have noticed is that when i do get the odd bad period of dizziness, i seem to go back to my normal milder dizzy faster than before. That in itself has really helped me, particularly as I do a job which involves many events and presentations every week and I don’t have time to take many days off to recover. Also it’s not easy doing presentations when the audience keeps spinning around in front of you
I guess my next decision is whether I settle at this very mild dizziness with more good days than bad or whether I now try another med with the serc to get closer still to 100%
I also have a really busy March coming up which normally makes me very tired and dizzy so I guess the real test for the Serc will be then.
Pink - I checked the side effect profile of Nori, and severe dizziness is listed as an allergic reaction. Don’t know if yours is severe dizziness or just worsening dizziness. I’ve never done well on a med where I felt worse for awhile… maybe weird or different, but not worse. Definitely check in with the doctor to see what they advise. On that note, my neuro added Nori to my treatment today and cut back on the topamax because she was not enthusiastic about how cold the stuff makes me at such a relatively low dose (60 mg. per day). So, I guess I’ll see how I do tonite when I take the stuff at bedtime… it’s supposed to help me sleep…LOL.
I talked to doc today and updated him on the latest side effects, etc. I thought he’d suggest yet another med, but instead he suggested surgery for my “suspected” Superior Canal Dehiscence that was picked up on a hi-res CT scan back in Oct. 2010. The scan showed that the little sucker was very very thin and could have a crack in it, but it wasn’t enough to bank on back then. Back then, he wanted to go with the MAV diagnosis before he cut into my skull which I was very happy about. I said to the doc, “…but I have so much that still fits the MAV diagnosis though.” this is the best part----He thinks that maybe I’m “lucky” and maybe I have BOTH!!! (Too many maybe’s!) He said that he thinks that I should be responding better to the meds by now (I’ve only tried 3 meds) and, that while he’s happy to let me keep trying the meds, he thinks that we could be missing a “bigger problem” (Superior Canal Dehiscience.) So, after much dicussion, we are supposed to talk tomorrow after he talks to the neuro-radiologist that read the CT to see if I need another scan or if he can get a beter view on the original one from 10/10. I told him that I thought that I needed to just buck-up and keep plowing through the meds…then he said something that shocked me, “…your body is telling you something if you are losing your hair an your symptoms are worse.” Huh!!! I was under the understanding that feeling extra awful for a really long time was what I was supposed to do to get better. He said that while he admired my go-to attitude, he feels in his gut that I really need this surgery and we will see if I present with MAV after the surgery. Hmmmm, any thoughts? Oh, I’m the only freak on the forum that hears her eyeballs move in one ear 24/7!
Personally if someone was going to crack my skull open I’d want them to be sure and not just suspect… I’m not a doc so of course can’t comment on the diagnosis - it may be that you are really unlucky and do have both. But from a MAV point of view it took me 4 months on just one med before I really started to improve.
It’s a tough one - maybe a second opinion woudl help you make a decision?
Pink - before I agreed to any surgery like that I would certainly get a second scan along with a second opinion. And, there are more medications out there to try. There’s no doubt that being dizzy is horrible, but it sounds like you can take your time on the next step.
I agree and I’m totally on the same page. I will not do anything until: 1) I can get another scan that is better or 2) They can re-format the original one to show more evidence of a dehiscence. This doc has a good rep. and seems to know his stuff. He wrote “Ballenger’s Otolaryngology Head and Neck Surgery” (which has very useful info. for all of us in it.) In the area that I live, there’s no docs who could help me, so I travel the 7+ hours to see him. If need be, I will travel further to get a second opinion. Meanwhile, I’m still going to keep on with the Verelan and the Nori. to see if I gat anyhwere on them. There’s other drugs in different drug classes that I haven’t tried yet, not to mention more meds in the drug classes that I’m on.
Pink - how did you do on the Nori last night? My neuro cut my topamax dose in half and added 10mg Nori @ night… I didn’t sleep well last night at all despite her prediction and felt mostly felt floaty. Today I am a sedated mess. Good thing I didn’t have to work today. Not really dizzy… just sedated and floaty. This won’t be good if it continues.
Gail- Yes, I don’t sleep well with the Nori. (like my brain is buzzing) but yet I’m sedated as heck. Maybe it’s not what our brains need—who knows? Like your doc said, most people on Nori. sleep really well. I’m going to stick with it for at good 2 weeks (I have 8 more days to go.) My guess is that if we react to it this way, then we need help with different neurotransmitters that a different antidepressant provides or something else altogether. But, what do I know??!
The meds can be activating at first…they call it wired and tired…strange! It would be a good idea to get some sleeping meds or benzos while your body adjusts. That way you get the sleep you need…
Re Nori - I was on nori for one month and had the worst insomnia ever, only 10 mgs a day. I tried taking it in the morning, in the night, every other day, etc, but the insomnia persisted. That was one side effect I did not expect. I would go to bed so tired, sure I would sleep thorugh night but would then wake up an hour or two later and be up for the next 4-5 hours. My doctor wasn’t too helpful so I asked the pharmacist. He said after a month it is highly unlikely to get better so I stopped and within 2-3 nights was sleeping so much better. I gave it my best shot but it just wasn’t the right drug for me. If after 2-4 weeks it is still making you so dizzy that you have to take something to counteract that I would consider going off and trying something else. However, if you do in fact have SCD and not MAV nori isn’t going to be much help.
Re SCD - yes, definitely a good idea to get a second opinion and scan. And many doctors won’t do surgery unless their patient does get a second opinon. If necessary, get a 3rd and 4th. All these vertigo disorders have such similar symptoms it is so hard to get a correct diagnosis. But SCD is one of the disorders that can actually be seen so if someone tells you you have that you can be pretty sure you do. However, I see you wrote “suspected” so I guess nothing is certain at this point. If it were me I think I would be relieved to get a definite diagnosis of SCD instead of all these wishy-washy ones I have been getting.
Pink - ironically enough I wasn’t dizzy hardly at all today… just sedated and tired as heck LOL. The doctor didn’t want me combining the 10mg with the Lunesta that I usually take… well…I will tonite because I’m not going to float and wake through tonite again. Sheesh. I may end up on my 60mg of freezing topamax again. Or, maybe I can make do at 45mg. which doesn’t make me too cold or tingly. That’s my only major complaint about that med… However, if a combo of low dose Nori and low dose Topa would manage the dizziness, then I could be receptive. Guess I’ll know in a few more days.
Gail : )
Kelley - the other SSRI’s I’ve taken were activating, too but not until I’d taken them awhile. This is a weird experience with Nori…or maybe because it interacts with Topa. Not sure yet. But I will quickly abandon anything that robs me of too much sleep.
Book- One would think that I would be relieved to get an SCD diagnosis. But he thinks that I probably have both MAV and SCD…and only having the surgery would really reveal the truth. I’m not jumping into anything yet. It’s funny, last year when I was running from one doctor to the next with no diagnosis, I would have booked the first available operating room the minute I heard that I have SCD. But after learning about how much all of these conditions overlap each other…I’m not in such a rush!
Pink- I just opened my Nori capsule and took only 1/2 which equals 5 mg. I’ll see how this goes. At least I won’t be as sedated tomorrow morning. Years ago I was on Prozac and it only took 5mg. to keep me cooking along. I told my neuro how I react to meds, but she thought 10mg was a “baby” dose…she really doesn’t know me that well yet…LOL
Gail- I did just what you did for the first few nights that I took Nori. Those pesky powder-filled capsules hard hard to deal with. I have lots of experience dividing doses since they never make the dosages that a wimp like me needs. FYI…go to a pharmacy or health food store and get clear gelatin capsules that you can fill up when you split doses to fit your needs. Some capsules that are filled with powder, and not the little balls, are harder to handle. The solid pills are easy, but sometimes the meds don’t come in a pill form. I sure hope that you aren’t up all night—good luck. I just took my Nori 10mg and my Verapamil 120mg and I took a chaser of Ativan so I can get some @!#!)%!&! sleep tonight!! Sweet dreams…zzzz…
I started Ami 5 days ago, 10 mg. I’ve been on 100mg Dothiepin for about 7 years (for panic disorder, not MAV), and saw my otoneurologist last Monday. I’ve had a really bad year for MAV, so she decided it was time to cut down the Dothiepin (to 75mg for now) and start the Ami.
Well, at first I felt quite nice, kind of chilled and drowsy. However, today I have been a total zombie. I woke at 9am, got up, had breakfast, then felt so tired went back to bed till 1pm, having had a sort of semi-awake, semi-asleep few hours, then got up again, had lunch, exhausted again, went back to bed at 3pm. Slept till 6pm. Now I’m up again but my eyes feel so heavy and I can sort of tell the dizziness is still there in the background behind the drowsiness. To top it all my resting pulse is varying between 85-95 bpm and my muscles ache like I’ve been to the gym (which I haven’t) and my wee is a bright green-yellow like I’m radioactive!
Like you, not sure how long to persist with this. Also, there’s the added complication that I may be getting withdrawals from the Dothiepin. They’re both tricyclics and quite similar, but you never know. My otoneuro said Dothiepin was not good for migraine (although I know some on this forum have done well on it). She’s v. keen on Ami. I’m gonna try and persist for another week or so. I’m seeing the doc again on Monday.
Nothing is EVER straight forward with this damn thing.