10 years with VM. New member. Nortryptyline S/E

Hi everyone. I’ve been reading this forum for some time and you all have been very helpful in my diagnosis of VM.

I hope to write up my full story very soon and officially introduce myself but right now I’m looking for a bit of advice.

I started nortryptyline 10mg three nights ago. The first two nights i had a bit of heart pounding/racing and insomnia but not quite what I experienced last night.

I took my third dose last night around 7pm and by 10pm my heart was pounding/racing/palpitations often, arm pain, feeling like i has to breath in deep to catch my breath, breast swelling and every time I tried to fall asleep I’d jolt out of bed. It has almost been 24 hours since the dose and I’m still feeling heart flutters and pounding.

The strange thing is that I’ve taken this medication before about 4 months ago and i was feeling some relief from the VM symtoms at 10mg but when I bumped up to 20mg I had severe VM symtoms. I was working at the time and could not tolerate working while trying to wait out the 2/3 weeks to get used to the increase. I eventually stopped the med altogether.

I recently lost my job as an RN bc of this illness. I am on short term disability in order to finally resolve this ongoing battle. My thoughts were- this time I’m going to give nortriptyline a fair chance since i have the time off. Then this happened…

Many people I talk to are saying “stick it out bc it’s worse before it gets better” and that the symtoms may just be panic but these symtoms are awful and i just don’t feel right. I’m beyond frustrated because I can actually feel my balance improving and the light sensitive has decreased significantly even within 3 days of taking this medication. Well enough that I’m actually able to write this. Three days ago i wouldn’t be able to look at a phone for more than 30 seconds without getting tingling/pain in my forehead and then bouncing/rocking/vertigo almost immediately.

Has anyone experienced these symptoms and stopped/continued or have any advice?

Thank you so much.

Welcome Kristin! Many of us can relate to your medication experience. I had awful and strange symptoms getting on Paxil, even though I had been on Paxil 20 years earlier for depression without a single side effect back then. In hindsight, it shouldn’t have been that hard to get on Paxil this time, I wish I would have started at a much lower dose, or just tried another medication after the first week. But its hard to make that call, I know. Especially when everyone says it will get better and you are totally freaking about about all the weird symptoms. Paxil gave me icy-hot sensations across my whole body, almost went to the emergency room. Yes, insomnia. And yes, 4:00AM wake up with muscle twitches and racing heart beat. A very awful way to start the day. Part of those symptoms though were related to the vestibular migraine too I’m sure.

I assume you are working with a doctor on this, so maybe ask to try another trycyclic like Amitryptyline instead? You are only 3 days in so trying another one to see if it is relatively better might be a reasonable action to take. Anyways something to call your doctor about.

Also, the fact that you are noticing some improvements in your symptoms is good, you must be on the right track. Paxil never really gave me improvements in my symptoms (and then I had to get off it, uhg). It just made my head pressure worse and I felt like a zombie that could go to work again (barely). I still had massive visual triggers, but the drug just made me not care. It was weird and awful. Like my life was a horror movie but I didn’t feel anything.

I really do know how difficult it is to get on these meds, you are not alone and you will make it eventually. Even with my blood pressure medication Verapamil its been a bit tough. I am also thinking whether to try Nortryptyline or Amitryptyline soon, my next Neurology appointment is Monday.

Hello and welcome
I have just discontinued Nortriptyline a few days ago after less than a week on it at 10mg. I just couldnt tolerate it any longer. Im super med sensitive and trialed an array of drugs ( 4 years of MAV) amd unable to find THE ONE. Im just about to start Duloxetine 30mg and really nervous about it. I think i may take a leaf out of your book and take time off work and give the meds a good go…ive already lost 6 months work over 4 years off and on. Its sooooo hard
Jo x

Nortriptyline gave me my life back and I’d strongly recommend you stay on it but get a pill cutter and go up really slowly at 5 mgs a time. I think you are letting your anxiety get the better of you and it’s anxiety making you feel bad and not the nort. This medication is the best for mav so stick with it because it’s so worth it.

I know I already posted, but wanted to just say trust yourself. I slogged it out with Paxil for a long time and it wasn’t the anxiety that got the best of me. I really felt like I was covered in icy hot and I really woke up with racing heart and muscle twitching. I was not in control of my body. It was the wrong medication for me. MAV is a diagnosis of exclusion, the actual underlying condition is not known. If the underlying condition is not known, its hard to be sure a certain drug will work. Its trial and error and everybody has a different experience.

But if you can cut the pills (I assumed you could not), then I would start real low as @pepper12345 suggested. I would take a 1/10 dose prescribed if it were possible. This is what I did with Verapamil and I should have done it with Paxil too. Slow and steady is the best chance for your body to adjust in my opinion.

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Thanks everyone for responding.

Ander thanks for that. I am unable to cut mine but like you said I’m going to trust my instincts. Apparently the medication can be taken liquid and comes in 10mg/5ml form— My neurologist is going to call it in on Monday. For now, I’m holding off on the medication until I’m able to build the med up slowly in my system. I believe that i will most likely have withdrawal symptoms but honestly, I’d that over what I experienced last night.

Ander are you noticing any positive results from the verapamil even at low doses? Or had it not kicked in yet? I tried the verapamil and it made me very aware of my heartbeat and gave me one of the biggest vertigo bouts of all. Stopped it immediately.

Jojo-
I hope the duloxetine works for you! I hope i hear good things

Yes, I would split the 40mg verapamil into 20mg doses and spread them throughout the day, that was enough to stop some of the headaches. So even small doses are of benefit in my case, even after the first couple days. And yes, there is some strange sensations of heart beat sometimes, but they went away. There is also some flushing/hot feeling in the head, but I think it feels kind of good actually, more like my old self.

After about 6 weeks of building up to 100mg with split pills, I was able to get on 120mg ER. And just recently I doubled to 240mg ER and seem to be okay. It’s like my body is sort of used to it now and I understand how it makes me feel so I’m not so worried. Dizziness is still there (mild rocking) but now only about half the day. And the head pressure / aches are coming down considerably.

Good luck, I think you made a good decision. Be aware that if you go from liquid to pill form you might have some trouble. I notice this coming off of Paxil, where the liquid form was totally messing me up. Yes, they should be equal, but they weren’t for me. Eventually I just crushed the pills and weighed them on a scale, which I guess you can’t do with Nort.