Noritriptyline success!

I was completely bed bound with this illness and got back to full normality on nortryptaline and atenolol. As I have got older I had to wean off the atenolol due to not wanting to do much and just a lack of drive and now I don’t seem to be able to tolerate the nortryptaline! I was on 85mgs and I came down due to depression, weight gain and anxiety that I didn’t have before. I felt better but the light sensitivity and rocky Whirry feeling came back! So j went back up and te anxiety and depression is unbearable. Dr s now wants me to start pregabalin and taper off the nory. Anybody else experience this kind of thing and any words of wisdom I would really appreciate. Thanks xxxx

Hey!

I think that preglabin and gabapentin are very effective for some people, and that includes me in that category. In fact, gabapentin (I haven’t tried preglabin) is my #1. But I think they are very closely related? Gabapentin makes me tired but I can remedy that with 1 cup of coffee max or else it kind of cancels out some of the benefits.

I am on 200mg 3x per day of gaba and it’s working very well to help me regain some normalcy in my life. I do have to watch what I eat more because I think that there’s some water retention that it causes, but I tried nortriptyline and it seemed to have more of a bloating effect that gabapentin.

Keep me posted on how you fare on preglabin. I may try that next if I want to see if that one is even more highly effective. But I like gabapentin a LOT so far. If I am exposed to an extreme amount of lights, it’s still tough, but overall I’m 95% on it!

Liv

Thanks so much for your reply as it means the world! I took it last night and am ok! My two children ran into me in the middle of the night and I felt quite nauseous and spacey, room moving but not too bad at all today! I was back to normal on the high doses of nory although like you said, lights were and still are a massive trigger for me so I always go in shops with hat and sunglasses. The high doses of nory have left me full of spots, when j always had clear skin, fat and depressed. I’m hoping that in the cross over period I don’t get even bigger as will be on the two whilst I get on pregabalin and bring down the nory! The anxiety and depression which id never had before is awful and I’m slightly scared that being on two at the same time I won’t know what side effects I get from the pregabalin! So good to hear that nory for you was more of a weight water gain issue! I will keep you updated. Hope your ok today and this pesky illness is on the down low! Xxxx

Hey there,

I’m so glad I could help! This illness is totally wild–only other people with it understand how incapacitating it can be (especially when you look well).

It’s wonderful you have a family already though! This illness hit me when I was 27 so I have been worried about what that means if I have to choose between meds and having kids. Maybe I’ll adopt one day!?

Thank goodness for the meds that do work though. Nortriptyline and gabapentin have worked for me–but I am very sensitive to meds so I have to take low doses (which seem to work for me since I metabolize them efficiently I think!) Gaba at 200mg 3x per day is my saving grace.

Nortriptyline I couldn’t take because I got a rapid heart beat on it, but I think that’s a rare side effect. I too had weird acne issues on nort though! Nothing with gabapentin so hopefully preglabin will be great for you. Gaba has had utterly no side effects for me aside from slight sleepiness, which is kind of nice because it calms me down from this illness, which is obviously very stressful as you know! Sometimes I get a little head pressure or ear crackling from a ton of stimuli, but overall I’m feeling very well on this dose of this med.

I am able to horseback ride (which shows how much I’ve recovered), go out with friends, and do my work on gabapentin. Lights can sometimes be a problem if they are super intense but I am overall very functional even at this low dose.

Do keep me posted about how you find it because I am very curious about preglabin too!

Liv

Liv,
I got this when I was 26 and pregnant with my first child! The second one I stayed on the nortryptaline 75mgs at the time and was much more well than first time! You can do it! I have found norytriptaline gives me terrible acne and I’ve had to come down to 75mgs from 85mgs as I have experienced panic attacks and depression. On the higher doses! Never had that before unless I was on the pill etc. It’s a terrible illness but in other ways it has given me so much too. I am a midwife, I work hard, I am single parent of two boys and I am leaps ahead of most people my age in my understanding of life. Thank god for people like you. I mean it, knowing your there and you get it, means the world! You will have a life Liv and you can have children. The psychiatric team got in touch with me when I was pregnant and they were not worried about the effects on my unborn baby at all. And said it was a minimal dose. I’m not sure about Gabapentin but you could get through it I’m sure. Never give up on your dreams! X and thank you again xxxxx

Gosh you are so kind!! I really appreciate the encouragement. You know how it is… I feel exactly the same way, I am so much ahead of some people in terms of getting what is important in life now. I think about stress levels and sleep, and I supplement with Vitamin D and B12, and make sure I get enough nutrition and exercise. the gym has helped a lot with my stress and anxiety from this. I love the elliptical.

I also feel that having this terrible illness opened me up to other people in a new way. I felt much more empathetic to people who are suffering, and I don’t care as much about nonsense. The lucky thing is that there are medicines that help MAV a lot, and various ones too…the trick is finding the one that does not have too many side effects or makes you feel worse in other ways!

Gabapentin is my favorite out of all that I’ve tried (no acne on it, really no weight gain–you just have to make sure not to eat if you’re sleepy on it!), but it does make a me a little tired for a few hours.

I may try to go to 100mg 3x a day to see if that can be enough so I am not as sleepy… I feel relaxed, but I need to do my work! :slight_smile: Preglabin is very closely related to gabapentin, and I think they are very low on the side effect profile.

I do hope to have children and that’s very encouraging to know that you had no problems while on nort.! How wonderful to hear. I think Gabapentin is much safer than Topamax… I will look into whether a very low dose like the one I am on is OK. Keep staying strong and well, and I have a good feeling preglabin will help. In my experience, the lower the drug dose, the better success I’ve had. I am just very sensitive to the medicines! Whenever you need to reach out, I’m here. Liv xx

PS Looks like Gabapentin may be safe during pregnancy, but I’m not sure what dose was used in this study! I take a very small dose though and it seems to help enormously. Severe Morning Sickness Patients Get Relief from Anti-Seizure Drug, UB Professor Has Found - University at Buffalo
xx

Same Liv xxxxxxx keep strong and you can do it I promise xxxxxx

I also got this at 26 when I was pregnant with my second child. It’s been a nightmare. I now have three kids. My doctors think it began with vestibular nueronitis and the vestibular migraine followed… I never had migraines before all this and still have never had the painful headache. I have every single vestibular symptom though :frowning: