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Newly diagnosed and trying to figure out how I am going to take these medications

Hi everyone, I was just diagnosed this past Monday with Vestibular Migraine. My journey hasn’t been a very long one, but it has been awful. At the end of January this year I caught a virus, it was a standard stomach virus, but about a day into my recovery, I suddenly felt like I was going to faint. I panicked immediately, and after 30 minutes of the feeling not going away, I proceeded to the ER. There they said I was critically low on potassium and was clearly dehydrated. So, they pumped me full of Zofran (not sure why as I was no longer nauseous) and gave me IV fluids including potassium. As I was being discharged I told them that I felt no different. I still felt faint and off. Fast forward to 2 weeks later, I had another really bad episode of almost fainting. In between that time I had felt pretty dizzy and wobbly and faint in general. These episodes, however, would seemingly come out of nowhere. Back to the ER, I went. This time, they saw heart palpitations and said I was having anxiety attacks. After the second ER visit, I went to my GP, she told me “This is vertigo, and there is really nothing you can do about it. Some people have this for a very long time.”

So I am depressed and anxious about it but determined to figure out what is wrong. I tried upper cervical chiropractic, I went to a super healthy diet, started vestibular therapy, and I started talk therapy. Nothing was helping. Since then I have had about 30+ episodes. I am dizzy all the time, and I feel slightly faint all the time. But these episodes make me feel like I am dying. Now it is becoming hard for me to eat due to nausea.

I finally got into the neurotologist on Monday this past week- which was a phone call due to COVID. He diagnosed me with vestibular migraine. He prescribed Nortriptyline. 3 days later I had an appointment with a psychiatrist and he prescribed me Sertraline bc I told him I was so scared of the Nort.

I do have Ativan from my GP as well. I am so scared to take the nortriptyline because of the side effects. I am so faint and nauseous all the time that I am afraid this will make everything worse. I know people say give it time to work (about 4 weeks.) I am less afraid of the sertraline, but I don’t want to take something that isn’t going to help. I guess I am wondering if any of you have any suggestions? TIA!!!

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I hope you really feel better
I am as you diagnosed with vestibular migraine and have been taking cymbalta 30 mg and might increase the dose to feel more effective

Have you noticed any improvement?

I was 80% better
My attack was sever and had to feel dizzy and rocking sensation for almost 8 months
Could not move without help
Could not drive or work
I was in the rock bottom
But
I took cymbalta for almost 18 months
Had dizziness but is durable and manageable
Stupidly i lowered my dose and quite the medicine and BAM
The symptoms and anxiety went over the roof
So i am back to it
I only quite because i wanted to go for ivf pregnant

Do you feel nervous about taking the Ativan and sertraline also? Or is it just the nortriptyline that is making you nervous?

Also, what dosage of nortriptyline did your doctor prescribe?

Hi Cate,
So sorry for what you’ve been going through this awful condition. You have had very prompt diagnosis’s and treatment and that is beyond great when it comes to recovery! I know as you read this you may think that somehow your different and I can’t possibly know how scared you are… I thought the same when I first came here a year and half ago. I was terrified!.. of everything! Especially medication. I was misdiagnosed for a year and unmedicated. Amitriptyline and now Nortriptyline have saved the quality of my life! I am now at 15 months (7 months Ami and 8 months Nort) with medication and I honestly can go an entire day without even thinking about dizziness! I didn’t think it was Possible! Side affects were SO MUCH easier than I thought they would be. I refused to take my script for 2 months before my husband put his foot down. Thank God he did and thank God I have my life back! Please take a sec to read my diary where I talk about the he progress. You can do it too! Hang in there! Renee’s MAV journey

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I wasn’t so nervous about the ativan because I had taken xanax in the past and did fine with that. The nortriptyline scares me because I have read so many reviews and watched people with VM on youtube that take Nort and they said it is terrible the first couple months. I just don’t have a ton of wiggle room for worsening symptoms. I really don’t want this to trigger an ER trip bc COVID is bad in my area. They have me started at 10 mg. I guess I am worried because I am a stay at home mom, and I already have nausea and heart palpitations and a little heart murmur and I just can’t fathom dealing with worsening symptoms/more bad episodes for even a week. These episodes are so bad I want to go to the ER. I had never even been to the ER before this, I am just not that kind of person. I don’t even come off the soccer field when I get knocked down hard. This has just got me in such a sensitive state. I am also a little nervous about the sertraline but not as nervous I guess. About 2 years ago I went on lexapro for a bit because I had a lot of muscle twitching going on. So I have experienced an SSRI. I don’t know what to think.

Yeah, I did so much research I basically self diagnosed pretty quickly. Then I just needed to see the neurotologist to get a confirmation. I must ask, when did you notice the med was working and how bad was the beginning of the med?

Also, thank you I will read your diary!

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Beginning medication was so scary… however for me, there were no side affects that were worse than my typical worse day. I actually felt some improvements within a couple weeks. The thing is that most improvements come in such tinnnnyyyyy little doses that you don’t ever have an “aha” moment when things get better. It’s like watching a child grow… you don’t see it every day until you look back. I know everyone has differing stories as to how medications affect them but for me I never had a severe reaction to the medicine. I switched from Ami to Nort because of weight gain.

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It’s good they started you at 10mg. I started at 25mg and for two days I felt like I was coming off of a sedative. I was so groggy and out of it and couldn’t think so my neurologist prescribed 10mg and I noticed no intense side effects from that doseage. Everyone is different though.

Starting medication is hard and scary. I’m still trialing medications and I am currently taking nortriptyline and topiramate. I’m a working mom (and have been a stay at home mom too so you have my upmost respect!) and I don’t have much wiggle room for worsening symptoms either…But they way I see it is we’re never going to find out unless we try. We have to start somewhere. Everyone here says go “low and slow” and it’s good advice!

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Start low and go up slowly and at your own pace. I think when MAV is really bad we don’t think clearly. I didn’t want to take meds either even though I was in a right state having spent most of a summer bed bound with it. Looking back it seems so perverse not to want to try a med to better my situation. 20-50mg of Amitriptyline which is similar to Nort is regularly prescribed for teens with migraine. I took Ami for chronic migraine several years ago and it took me a few months to get up to 30mg, it’s fine if your journey takes a bit longer than others.

For MAV, my specialist initially prescribed Pregablin(Lyrica) but I read so many awful things about it on the internet and there seemed to be swathes of facebook groups and Youtube videos about how dreadful it was and then my GP was very reluctant to prescribe it due to how hard he felt it was to come off. I was a total wreck and in a panic about taking it. I talked to my specialist again and we agreed to try a different med. He said that one med could be as good as another and it can take a while to find the right one or right combo for each person. He said he had prescribed the pregablin as I had talked about having great anxiety in the dentists chair, on public transport and in supermarkets due to MAV symptoms and that pregablin cut through anxiety “like a hot knife through butter.” However, the MOST important thing was to get on a MAV med, any med and start your journey.

I agree with Naejohn above, it is only looking back that I can see how improved I now am (and my partner telling me too) and how contrary I must have seemed when in a panic about starting meds. Perhaps start with the one you feel least afraid of. If you are too afraid of a certain med then you probably won’t give it a proper go. Try to remember if you feel really strange straight after taking a med, it is likely it is a panic reaction, not the med and that it can take a good few weeks or even months to see improvement as you need to get up onto a therapeutic dose that is right for You.

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Its a long road to recovery and there is no quick fix unfortunately. Also unfortunately, there is not a one size fits all approach to this diagnosis. Unlike other conditions, there are no randomized control trials, no guidelines, no protocols. Treating vestibular migraines and dizzy disorders are really akin to throwing a dart at a dart board, sometimes you hit a bullseye your first try and are really lucky, but most of the time you do not and so have to keep trying until you get there. Also unfortunately, you have to be on medication for several months before you can decide that it is working or not working. My experience with Nortriptyline will not necessarily be your experience with it and vice versa. All medications have side effects and unless they are intolerable from the get go (for example, my blood pressure on Effexor 37.5 mg on day 1 was 145/95 with a resting heart rate of 100 and I was amongst the 10% that found Nortryptyline activating) its worth it to bare with it. I ended up on Cymbalta and even though, the side effects were annoying, they were tolerable and eventually subsided for the most part and after a few weeks it became clear the the benefits outweighed the risks. Be careful about Benzodiazepines like Ativan, they can be addictive and sedating. At my absolute worst, I could not eat, I could not be in the house because it was too stimulating, I could not be in the same room as someone even looking at a phone screen, I did not work for 2 months. Its been almost 9 months and I am happy to report that most days I am just fine. I get some twinges here and there, but nothing long lasting. I am back to work full time and working crazy hours due to COVID, I am back to running, I am sleeping well, I am reading books again-all things I never thought I would be able to do. The universal take home points I can give you are 1)come here for support, but not necessarily medical advice. Although I am sure there are physicians on here, its probably to best take advice from your doctor. There were times when I completely doubted my neurologist because of information I found on here or other message boards and at the end of the day he was 100% correct. 2)Exercise is REALLY important. Even though going outside for a short walk is probably the last thing you want to do, over time it will really help. So start small. 3)Therapy-I cannot stress this enough. I was a complete disaster 5 months ago. I was having panic attacks. I could not be at home by myself. It was awful. Thanks to an amazing therapist, I am flitting through COVID amazingly well and believe me, I am in healthcare and its been stressful! So hang in there, although it seems like there is no light at the end of the tunnel, there is. Celebrate your good days and be kind to yourself on your bad days. Stay safe, its crazy out there!

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As a long-time MAV sufferer and forum member I must say I agree with almost everything you write however as a Forum Moderator I must make it quite clear there are no physicians currently participating. Helen

Is being a Physician an excluding criteria for joining the forum even if one suffers from Vestibular Migraine/Dizzy Disorders?

Hello and welcome,
I want to assure you that a very many of us (myself included) have felt or are still feeling the very same symptoms you are- it’s not life ending, even though it sure feels that way…I myself have been on nortriptyline for almost 13months now. It took about 4-6 weeks to really work for my dizziness and nausea…once I got up to 30 mgs I felt almost perfect…it takes a bit for your body to acclimate to the new medication, this is normal, but I have almost none of the side effects mentioned for this drug, everyone’s different though, I only have a slight dry mouth from it is all…
Please I hope this helps settle your uneasiness about this very good medication for vestibular migraine symptoms… it gave me my life back and I will most certainly always let others new to this medication know my story of success while on it. I’d do as your doctor suggests, they are the ones who see lots of patients with your disorder an know what works the best and what might not. Also, my suggestion…only try one medication at a time, so you know what side effects are from what, if you take two new medications at the same time you won’t know which one is causing side effects, if you even get any…that’s just what I did, and I kept a journal of daily feelings and what I ate an drank so I’d be aware of where I was lacking on…good luck to you and you found an amazing supportive site, good job!!!
Michelle-

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30 mg of Nortriptyline was a HUGE help for me. Scaled in 10 mg at a time. Took it at night before bed. I’d say go ahead and give it a whirl. This whole thing is awful, but it really can get better. You’re fortunate you got a diagnosis so quick. Lots of people roll around with misdiagnoses for years before they get as far as you are now.

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I’m so sorry you are suffering. I was prescribed Amitriptiline after nearly 18 months of visual vertigo and dizziness. I can say just hold on and keep taking the Nort. The meds are the only thing that helped me get back to almost normal, it took a year though. The improvement is very up and down and symptoms can flare up when you change the dosage. I felt the best at 40mg and have stayed on that dosage. I feel the medication plus time is the answer. I now feel virtually normal but still have some off days, probably caused by stress and tight neck muscles. I found Bowen therapy helpful to in combination with the meds. I wouldnt have improved without the meds, don’t give up!

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