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What’s your experience/success/side effects with nortriptyline please?

rhea_smith1991
rhea_smith1991

Hello,

I suffer with chronic severe migraines (which have been every day for the past few months). I had a nerve block 3 weeks ago which has helped but the effects are wearing off now and this right sided agonising migraine is coming back.. Spoke to nuro the other day she said that repeated nerve blocks aren’t ideal in the long run as it’s steroids they use and it’s not really a preventative more good to get you out of pain when it’s gone like every day.. But I can get it again if am in agony again so as and when needed really.. She now wants me to start nortriptyline and I would love to hear what everyone’s experiences has been like? Has it helped? What where your side effects etc?.. The nuro said she will see me again on video chat in a few weeks to see how I getting on and if am not getting any better could try Botox..

Thanks for reading and I hope yous are all well and pain free! X

12 Replies
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If it’s anything like amitryptaline I would be careful although many people benefit from these type of preventatives, many can’t tolerate the side affects. Amitryptaline helped my pain for 9 months before it started back again. It wasn’t until I weaned off before I realised just how much it made me like a zombie with dementia. I tried the nerve blocks and they didn’t help at all. Also thinking of Botox now however mine seem to be less intense than they were when they started 7 years ago x

Thanks for the reply! And yes they able like Amitriptyline but meant to be more tolerable and have less side effects.. Am hoping I can tolerate them and that they do help, 😩 yes I think I really just want to go with the Botox as previous medication and pain killers haven’t really helped and side effects are always horrible.. am glad yours are getting less severe! X

Hi Rhea. I've responded on another thread the following: I took Nortriptyline last year. What works for one person won't always work for someone else. Unfortunately, that's the thing with preventives for migraines, nothing works for everybody. It didn't do anything for me except making me tired all the time, dry mouth, constipation, bloating and weight gain, and hives. I took it for many months in the hope that my body would adjust to it and would allow me to go up to the max dosage. But after 4 months I had to admit defeat (never managed over 50mg). However, I don't believe it would have ever worked for me, whatever the dosage. I managed to come off it quite quickly (a few weeks), which makes me think that the stuff really didn't help and that my body was too happy to get rid of it.

What makes it very difficult with this type of medication is that you need to increase the dosage regularly up to whatever max your doctor will have set for you and then take it at that dosage for at least 3 months to see if it works. This makes a total of 6 months, more or less. Except of course if you respond to it quickly. But if it doesn't work, it takes again quite a while to come off it.

Botox is another story but it is definitely not 'just water, really', like my headache doctor said. It normally takes 2 rounds before you can tell if it works or not (so, several months again :( ). I decided to suspend Botox after the first round because of the side-effects I had (my doctor tried to tell me that the side effects which lasted for weeks on end were probably just a virus I caught. Haha, prefer laughing than crying).

Just make sure that your migraine diagnosis is correct. Doctors are far too quick to say that all headaches (especially in women) are migraines, considering that there is no test to confirm it. I'm trying to see other specialists at the moment, as I think I don't have just migraines and this could explain why the preventives fail one after the other.

All the best.

Thank you so much for that reply! I have literally just done another post in nuro support as I too Think I have more than just typical Migraines.. I am constantly tired, feel flu like in my body, have speech problems with the migraines but also when am not having migraines, I get twitching in my muscles such as arms and legs and eyes, I’ve had weight loss, loss of appetite, I get an itchy rash/hives with some bruising, dizziness, vertigo, chest and rib pain, eyesight keeps getting worse needing stronger glasses every year.. the list is endless I feel like am going insane!! Am going my gp Monday am writing a list of every symptom I suffer with and telling her this is not normal! Am 29 and have a little girl Who is only 6.. And I was meant to start uni this Sep but had to be put on the January intake as am just too unwell.. I don’t know what’s going on with me but am worried and my gp doesn’t seem to cate or be much help.. hope your ok x

Hi Rhea. You've never been diagnosed with hypermobility, have you? Sorry, this is because I've seen this show on BBC this week, and I know of someone who is border line with this syndrome: honorhealth.com/medical-ser...

If this is not the case, just ignore me! By the way, this series on BBC is called The Diagnosis Detectives and is rather interesting. Just saying.

Have a lovely weekend.

Hello, and no haven’t been diagnosed with that.. Will have a little watch.. Am going back to my GP this week and seeing my neurologist the beginning of October as I think I’ve got more going on with me than migraines.. 😭 Hope your well x

Are you taking anything else? Have you seen a migraine specialist?

I see a neurologist (who specialises in migraines) at the Walton centre in Liverpool.. I’ve had a occipital nerve block few weeks ago which helped for the first week with the right sided pain.. I’ve tried propanol, candersartan, all no success and lowered my BP and heart rate.. I’ve just started takin magnesium Glycinate.. Am getting a daith piercing done tomorrow too.. Also follow a no sugar/grain/starch and high protein/fat and low net carb diet x

With all your doing, are you having fewer migraines?

Hello, the past 2 weeks I have noticed an improvement! Hoping it stays that way and I keep improving.. oh but I now have kidney stones so that’s making me feel awful! 😭

Hi Rhea, I take Nort. I have for just over 2 years now. I suffer with migraine variant balance disorder, whereby I felt like I was on a boat constantly. It's used a lot for people diagnosed with this dizziness/vertigo rocking sensation. It's been great at stopping the migraines and rocking but I had to keep upping the dose, I got to 85mg and I felt like I had dementia and the dryest eyeballs. There are some side effects, it however is amazing at getting me to sleep at night, as soon as my head hits the pillow I'm asleep. I've slowly cone back down to 40mg and for the most part I'm ok, I still get maybe 4/5 A month but thsts better than 13 and I used maxalt melts to stop the migraine. I'm also on pizotifen which actually helped loads. 0.5mg x2. Hope thst helps, Alex

Thank you for the reply! My dr changed it to Amitriptyline instead of nurotriptiline.. don’t know why.. So been taking 10mg at night time.. I do feel really groggy in the mornings and it makes me sleepy at night time but other than that I feel ok off it.. Glad there is treatment that’s helping you!

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