I'm spent! - Nori has beaten me

Hi Guys
After 2 weeks suffering horrendous side effects, I have decided to give Nori the flick. Feel like I am a bit of a quitter, but I can’t take it anymore. This med affected me in so many ways. My dizziness sky rocketed, had shocking anxiety, insomnia and the debilitating headaches were the final straw. None of these symptoms seemed to improve as the days went on. I had reduced my dose to 5mg and still felt like death. Back to square one… To my disappointment the day after I stopped taking Nori I felt worse than ever with headaches, nausea, anxiety and of course the unrelenting dizziness. I think I am best to get back to “my normal” before I try another med. Ahhh…what to try? Can’t wait to have some escape from this warped world I am living in. One day…I know I need to be patient. On my list is Prothiaden. Any other suggestions. Just another question, I’m under the belief that a new med should make you feel better or indifferent initially rather than progressively worse. Do you agree? Sorry about all the questions, my mind is spinning ! Thanks for listening.
Kylie xx

I too had to quit Nori due to horrific migraines. I’m now taking Cymbalta, and I don’t really have any side effects. I’ve only been on it for about a week. I took it last fall and had some success with it. I stupidly got off of it bc I thought there was something else to help me even more. I took it for about 2 months. This time I’m sticking with it and going to up the dose ASAP.
Good luck with your decision! It’s so tough!

Hi Kylie,
I too had a similar experiencw with my nori trial. I had to stop at 10 mg because I was feeling so much worse in every way, especially the dizziness. My doctor is of the feeling that what you said is correct. A med should either not help in the beginning with no adverse side effects related to the dizziness or start to help a little for it to be a worthwhile med to keep pusing up in dosage. He feels that if a med is hurting you, it is not the right med for you. I am still trying to find my med to be honest and I have tried so many and failed that my doctor thinks I either don’t have MAV or I have MAV and mdds too. I am very fearful of this possibility.
Don’t give up. There are many many meds to keep trying!
Christine

Thanks so much Elisha and Christine.
I’ve been following your stories and you both have had a “rough trot” like so many on this site. It is really tough to find that wonder med. I am really confused about these medications especially the anti-depressant group of meds. I have just spoken to my neuro on the phone and told him my whole sorry story about my nori trial. He too said I made the right decision to stop taking nori especially since it was causing increased headaches/migraines. I asked him about Prothiaden as I have read quite a few success stories. He thought it was pointless trying this drug because it belonged to the same family of anti-depressants as the nori?? Very confusing. I’m going to have to study up on medications I think. He suggested I try Verapamil (Isoptin) and is sending out script. Really nervous about this one. I have tried an anti-hypertensive called Inderel before and I suffered terribly on that too. This drug works by lowering your blood pressure and with my BP being already very low I would have thought it would make me dizzier. Keep me posted on your progress girls. Cymbalta sounds good?
Thanks xx

Hi Kylie,
I’m on verapamil 240 mg’s and it hasn’t done anything for my MAV. Sorry :frowning: That doesn’t mean it won’t help you though. Cymbalta is not a migraine preventative and most neuro’s won’t put you on it for migraine unless you specifically ask. I was put on it initally bc I emailed with Dr. Hain who told me to go on a low dose of Effexor and my GP absolutely would not let me take it. He knows me well and knew it would be hard for me to tolerate. So he put me on Cymbalta. My neuro knows my history with it and that’s why she put me back on it. Kelley takes it and is doing well on it. There is also a success story on here from a lady who got better on it on a very low dose.
I wish you the best Kylie, it really is so so hard. We will make it though though.

Hi Elisha,

Mmmmm…Just not sold on the Verapamil. I’ll have to think that one through. Have you ever tried Topomax? My neuro thinks it is really effective. Another question …If you cannot tolerate one med from the tricyclic anti-depressants group does it mean you will react the same to another drug out of the same group?

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If you cannot tolerate one med from the tricyclic anti-depressants group does it mean you will react the same to another drug out of the same group?

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Not at all. As Elisha was saying she didn’t do well on Nort, but does well on Cymbalta. Some do well on Celexa, but not on Lexapro. From what I read and how I understand it, All SSRI’s, TCA’s etc… maybe in the same class, and typically do the same thing, however everybody responds differently to each and every one. Same for Nort and Ami. Some dont like Nort but like Ami. There are way to many examples like this for anyone doc to say that you wont do well on any of the TCA’s.

I have taken Topamax twice for 3 weeks each. Didn’t help, and hard coming off of it. I started at 25mg and couldn’t get past it. There are some success stories with Topamax. Funny your neuro likes it, mine hates it. He say’s he hates it, never prescribes it, and with all the literature against it, it shouldn’t be on the market. Very passionate about it. But I dont know of the literature he speaks of.

Good luck.
K

I agree with Kristina, you could try Ami and may be fine with it. I actually thought about that one too. Topamax is so highly favored by neuro’s for MAV. I tried it but I could not tolerate it at pediatric doses. I’m very sensitive to meds that cause fatigue. I would recommend you give it a go as there is a reason why Neuro’s like it so much. My sister takes it for migraine headaches (no vertigo, lucky girl) and is taking super high doses and is doing great on it!

Correct. Some people cant cope with Ami but are fine on Nori and vice versa.

Dont feel beaten. Give yourself some time out over the next week or so then get back on the horse!

Take care

That’s interesting…I don’t think my neuro is up to speed on MAV. I will speak to him about trying another drug from the same group. Hopefully he won’t dismiss my request this time. He seems pretty set in his ways. Thanks guys. I am not as confused now. So much to learn. Off to do some more research.

Nori does not provide what your brain needs. You can try another antidepressant like Amitriptyline, Celexa, Zoloft, Paxil, etc… Or you can try Verapamil, it works like a miracle for some patients, and its very well tolerated by most patients.

Thank you. I have tried ami before with no success. I am having a break at the moment…my brain is all over the place after stopping the nori. Can’t seem to get back to my baseline - it’s been 5 days since my last tablet. I have tried Inderel (also a anti-hypertensive) before and felt like dangerously tired (too tired to drive) and felt like the floor and walls were moving -strange? Do you think the Verapamil will have same effect? I have naturally low BP and resting pulse.