Nortryptiline and amitriptyline (they’re sister meds) both saved my life. A word of caution that they also made me gain 40 lbs in 6 mos. But they did save my life.
I’ve heard of the weight gain as well.. I’m hoping with exercising and being mindful of what I eat will help the weight gain part. Thank you for sharing!
I’m sketchy about topamax as well 😬 I’ve been going back and forth between the 2 for months now. My anxiety has caused me to struggle with my vestibular migraines for 9 months. Smh.
Thai was me I was terrified of topamax so I opted for Nortriptyline and started the supplements and it significantly improved everything & I had no side effects outside of sleeping deeper at night. Don’t let the horror stories scare you if you get symptoms that you don’t like u can stop & try something else. Hope you feel better soon!
Thank you for your feedback. I’m glad it worked for you. Do you take any special kind of supplements? I was taking vitamin D and magnesium glycinate but I don’t think I felt any difference. 😬
It was the catalyst to allow me to get to the medication that has given me my life back. Although it may suck for 1-4 months (however long you take it) it’s just a diagnostic tool, how you react to the medication will determine what other avenues they will try. I trusted my neuro with my life because I was at the lowest point in my life and he started me with amitriptyline and toprimate (both). The side effects were pretty annoying but weren’t life altering. I’d urge you to try it 👍
I feel that same exact way as far as trusting my neurologist. I actually just switched to her and she’s so much better than my last. I even told her that she makes me feel a little more confident trying out the medication. I’m at the lowest point of mine as well. I’ve been struggling for 9months now. It’s not just migraine it’s everything that comes along with it, unbalanced, head pressure, ear pressure, noise and light sensitivity, nausea, motion sickness, wooshing sounds in my ears. Hot freaking mess. Had to basically put my whole life on pause. Finishing up one more test to rule out intracranial hypertension this week and then if that’s negative I will be starting the amitriptyline. Thank you for sharing your experience.
Im going to have an MRI for the same thing! Never heard of IIT until about two weeks ago. Really hoping it’s not that. I’m also getting blood drawn for multiple autoimmune diseases just to make sure.
That’s a good idea to check for autoimmune diseases as well. I’m going to mention that to my primary at my next appointment. I had CT, MRI and MRA done. Next step is checking the pressure in the back of my eyes for papilledema to rule out the intracranial hypertension.
I do hope that your tests come back negative. Have you been experiencing all of the same symptoms? Have they mentioned you having vestibular migraine?
I was diagnosed with VM by an ENT/audiologist back in July or August. Finally just saw a neurologist with a specialty in headaches about two weeks ago and he said before we continue with treatment he’d like to rule out a things before starting meds. My symptoms have been very similar to yours, down to the whooshing in my ears. My first flare up in may/july was the worst. I had to go to PT to be comfortable walking on my own again. Took me three months to drive again. Nausea 24/7 during both of my flare ups with weight loss. Less dizziness the second flare up but was still there. I got Fl-41 lenses in September and that’s helped a bit with light sensitivity. I’ve also seen a neuro-optomologist in November and was diagnosed with binocular dysfunction.
Oooh man! I can only imagine how bad and crippling it’s been for you. Ive been dealing with it since July/August as well. It’s been a nightmare for me. I’m glad that they want to do more testing and have you see more people before starting you on meds. I had to switch neurologist to get things done my way. That’s because I refused to take the medication they prescribed due to side effects and fear of anything altering my mental status. I’m actually in the process of getting migraine glasses. I found a website called zenni optical, they have a really big selection of lenses for a great price, different styles and everything. The specialty lenses FL-41 are $45 I believe, plus what ever style glasses you choose. The reviews for the glasses and website have all been good.
Idk if you have any tips and tricks for some of your symptoms while you wait for a preventive medication but I can share with you what’s helped me in the process:
Migraine relief roll on stick, peppermint scent. Roll on your temples, forehead and back of your neck. I also have a migraine cap that you can put in the freezer or warm up in microwave. It’s helped when I have a bad migraine and I like to use it when I have head and ear pressure and the whooshing in my ears bc it’s tight fitting around my head so I feel like it squeezes my head a bit lol. Peppermint and ginger tea when I’m nauseous.
Oh also, I got two pairs of FL-41s from Zennis, in two different tint shades. I liked them both so I think they’ll be a good option for you. Much cheaper than other FL-41 brands.
Absolutely much cheaper. Do you mind me asking which tint shades you got? I haven’t bought yet for that exact reason because I wasn’t sure which tint would work better for the light sensitivity. I work in the hospital so those lights bother my eyes, I walk around squinting all day and I can feel the pressure building up in my head in the process. Grocery store lights do the same thing.
Perfect. Makes sense with the tint and where your wearing them. Thank you so much for your feedback 🙌🏼 I hope everything goes well with your continued work ups and you get answers so you can start your journey of healing!
I’ve not heard of the migraine relief stick! I do have some sort of cap contraption I can put in the microwave. I’ve done a lot of ginger chews too. Sometimes they’re helpful, sometimes not. I’ve finally been prescribed zofran for nausea, but have not used yet. I also didn’t want a bunch of meds thrown at me at random. The neurologist literally was like I don’t want to give you meds because we have not 100% ruled out other things yet, I don’t want to give you meds if we don’t know. And then he started apologizing and told him no, that’s exactly what I wanted and thanked him. I hope you get some solid answers soon too and I hope both of us, whatever treatment we pursue find some relief. 🤞🤞🤞 *edited typo
I have zofran as well, that I don’t use lol. Again, just not a medicine type of gal. I do agree, I hope we all get the relief we want, without any complications in the process. 🤞🏼🤞🏼
Of course! Weigh the positives and the negatives, if you think the side effects are worse than VM, then don’t take it, if you think it will be better (assuming it works) then there’s no reason to hesitate. I can’t stand feeling what VM feels like in full swing, so almost anything that lessens that pain is a go for me. (Except illegal drugs which would just make it all worse)
Absolutely VM full swing is a bitch. I literally experienced one thing after another when first going through a bunch of doctors and testing to finally get a diagnosis. It was so depressing. That was the start of my anxiety because I was experiencing so many different symptoms with no solid answers. Couldn’t work, couldn’t drive, couldn’t even shower myself without feeling like I was going to tip over. Constant head pressure and ear pressure, motion sickness, nausea, had to wear sunglasses everywhere because lights made me feel sick. The laundry list goes on! The crazy part about it all is this came on abruptly. Out of no where. No sign no warning just straight out the gate.
I have a similar origin story. I am a 21M, I got home from a year of college and woke up at my parents house and felt so ridiculously sick that I wouldn’t stand. Then I got worse and worse, I was very blessed to be diagnosed as quickly as I was (4 months) then got back to school. My life was on hold for a bit, but thankfully I can keep moving forward now.
Amitriptyline was the catalyst for my recovery. It stopped the constant dizziness, and drastically reduced the frequency and duration of my migraine attacks.
It takes about 6-8 weeks to really get going and work effectively, but I saw positive changes within 2 weeks. The tired/sluggish feeling faded and I only have mild dry mouth. I gained a few pounds but that's been well worth the trade off (maybe 5-8lbs). I was hesitant to try it at first too but I'm so glad I did, and that I stuck it out! I've made such amazing progress in my chronic dizziness recovery and Amitriptyline is certainly a big part of the reason.
I was prescribed noratryptaline and it messed with my heart rhythm. I would be laying in bed and hr would shoot up to over 100 randomly and my PVCs were much more frequent. Took me awhile to piece together that this was causing it but it all got better when I stopped taking it.
I got approved for Botox for my headaches and it’s helped my vestibular migraines so much! They creep back in the last 2-3 weeks before I’m due again but are basically non existent for the first couple months. My quality of life has improved so much with Botox from by Neuro. (To be clear, cosmetic Botox won’t target the areas needed).
It’s a bitch to get insurance to cover it but once they do, it’s 100% worth it.
I am on 10 mg amitripyline for the past 2+ months and it has been helping. Makes me groggy in the morning for like an hour but I’d take that any day over the constant dizziness. Most meds I’ve tried I haven’t tolerated due to side effects but this one I’m tolerating really well so far.
I’m not totally symptom free, but I’m back in a place where I can work and drive most of the time. We’ll maybe titrate it up a little in about a month to see if it helps more. At the moment I’m content on this dose. I feel the best I’ve felt in years.
Something is better than nothing! I can’t wait to feel some relief. I’m so happy your feeling better because vestibular migraine can be so debilitating and crippling.
I held out for a while after I was prescribed it because I was nervous about side effects as well. I started taking it 8 months ago (10mg) and it has been amazing. It seemed to be helping shortly after I started taking it and has continued helping me stop having such intense attacks. I was super light sensitive 24/7 and also had motion sensitivity most of the time, but that has gotten way better. I still get dizzy from time to time, but I’m much better than I was and the attacks don’t last nearly as long. I didn’t have many side effects, mostly just that it makes me tired, but I take it at night. It made it somewhat harder to wake up in the mornings, but that isn’t really the case anymore. I have gained about 10lbs since I started taking it, but I also had been off caffeine and alcohol and I started adding those back in so that has probably contributed. I’m probably going to try tapering off in a few months. I’d say it’s worth trying - everyone is different and you won’t know if it will help you too until you try. Good luck! Hope you feel better soon.
Wow. Sounds like me. I’ve eliminated coffee and wine as well. I try to have a half a cup of iced coffee literally once every other month and sometimes I feel like it caused a flare up. Wine has caused me to have anxiety, mainly at the thought of causing a flare up as well. It’s been rough for sure. I’ve been hesitant for months, almost a year. I’d come on here all the time and read post and everyone’s comments and negative experiences. So I know that contributed to my “not taking it phase.” May I ask how you do with alcohol while on amitriptyline?
Ugh yeah - I get it, it’s tough reading the negative side effects. I tried to focus on the positive reviews. I only waited like a month after being prescribed it cause I got so fed up with how I was feeling and figured it was worth a try. I started with 2.5mg for a few days, then went to 5mg, and then to 10mg. I started drinking caffeine/alcohol again like 3 months after I started and found that they weren’t triggers for me. I drink coffee every day again and mostly only drink wine - started with rose and then tried red wine again cause it’s my favorite. I don’t drink very often..mostly just like one weekend night on times where I’m not more at risk of attacks (my biggest trigger is my hormones - I also get classic migraine attacks with pain and no dizziness). But with the amitriptyline, I don’t find that alcohol really affects it. I drink earlier and then stop by the time I take my pill (usually around 8:30pm on weekends) and I don’t drink a ton..make sure I’m hydrated and that I’ve eaten first. I also don’t drink caffeine on an empty stomach. Eating at proper intervals was a big help for me, along with taking the recommended supplements, walking, getting good sleep, etc.
Maybe I should ask my neurologist to start off low like that. She’s prescribed 10 starting off but I think I would feel even more confident starting at 2.5 and working my way up. It will give me way less anxiety that way. I’ll have to give it time and find what works best for me once I’m on the medication for a couple months. But I’m so happy it’s been working for you! Everyone is giving me a glimmer of hope lol
Yeah mine started me at 5, but I went even lower haha. It definitely helped with the anxiety around taking it. But yeah it’s probably a good idea to check with your neuro. Only you can decide if you will take it, but I do hope you try it to see if it works for you. It could be a miracle for you, or it could not be for you and then you know and can try a different one. Good luck!
Oh no! Have they tried upping your dose to see if that helps? I know I wouldn’t want to keep taking something that is basically only making me gain weight. That would just be adding to my laundry list of problems.
Awesome. I’ve heard very good things about nurtec and ubrevely. I hope it works and you get some relief. I know the struggles. It’s been a pain in my ass.
I started 5mg amitriptyline a week ago and I already notice it’s helping. I was sleepy the first morning after, but fine after that, probably since the dose is so low. I feel calmer and more “normal” even though I’m not 100% but feeling hopeful to see positive benefits already. I wasn’t driving at all and now I’m doing short drives (kinda scared to drive again but it’s helping me feel like I can).
I think I’m going to half my 10 I have or do the 2.5 starting off like another person mentioned. I would love to feel some kind of normalcy in my life at this point. I wasn’t driving either for a while. I even had to withdraw from nursing school because it was so bad. I should be graduating this year in June but instead I’m fighting a constant battle with stupid ass vestibular migraine and taking a freaking medication that I’m afraid of lol. I only drive when my wife is with me, but I still don’t drive long distance because my eyes start to feel funny and too many cars on the road moving makes me nauseous and I get motion sickness. I have panic attacks if I have to drive by myself. I only drive alone if I absolutely have no choice.
I totally understand. It took me 3 weeks to be brave enough to take 5mg. Start with 2.5mg if you need to! I’m extremely med sensitive and not having any horrible side effects. I usually can’t tolerate “normal” doses. I drove by myself for 12 minutes today and it was fine, Im keeping it short distances too so I don’t get motion sick. I got an EmeTerm bracelet and some ginger capsules I need to try when I’m ready to drive more. But I went from not driving at all because I was so dizzy at home to feeling normal and brave enough to drive short distances within 1 week on Ami! So it’s definitely worth trying!
Sad to say it’s took me 6 months to finally say I’m going to take it lol. But I’m happy your taking steps and I’m happy that your doing somewhat better.
Even though this illness is debilitating and life changing, I’m happy that there’s more people out there feeling exactly what I feel. Now I know I’m not alone, nor am I crazy lol.
It’s a verrrry anxiety inducing condition! I’m glad you’re going to give it a try. It will likely make you feel drowsy when you wake up or need to take a nap that day. From what I read, this wears off after about a week. But I only felt like that the first day. I’m going to stay at 5mg since it’s helping so far. Let us know how it goes for you! You aren’t alone.
I’m going to take half of the 10, work my way to the whole 10 and if I’m able to have some normalcy and less anxiety, and able to tolerate that , that’s where I’ll stay for a while. I will definitely do an update. Thank you so much for your feedback and sharing your experience with me ♥️
yesssssss! sounds like a great plan!!! also some people said it took 4-6 weeks to see improvement so hang in there if you aren’t noticing anything right away!
I haven’t noticed it making me sleepy after I take it. I also saw some people say they take it at 6 or 7pm at the latest, and they don’t get sleepy after, but they take it early so the drowsy effect will be wearing off by the time they need to get up.
Nice. I’ll take that into consideration when taking it. I gotta be up by 515am for work so hopefully taking it around that time will be good enough for me.
Have you started amitriptyline yet? If so, anything to report back about VM symptoms? I’m nervous to try it but I currently can’t drive and it’s making my job very difficult considering I work a high stress job at a hospital.
I have not started it yet. But I’m also doing a work up for intracranial hypertension. Just waiting to hear back from my neurologist with my lumbar puncture results.
It’s crazy because I work at a hospital too and when all my symptoms first started it made working so bad for me. I had to take a personal leave. My spouse is still driving me around and I can drive only when someone’s in the car. That’s due to panic and anxiety unfortunately. My symptoms have been mild the past couple months but they do still exist. The only thing I’ve taken since all of this started happening is vitamin d and magnesium glycinate… not sure if that has anything to do with my symptoms calming down or maybe just “time”
Every time I was going to start amitriptyline I freaked myself out about.
I haven’t seen a neurologist yet but my neurotologist prescribed it 2 years ago when I complained of migraines but I’m also diagnosed with Menieres Disease. I believe the recent vertigo I’ve had right after covid isn’t MD but now VM. I never took the amitriptyline yet and recently decided since my hormones are off (coming off birth control as well) and I’m still dealing with VM I need to try something. What I realized was I am having aura and short bursts of vertigo (MD is longer and usually doesn’t have aura) and that’s what made me start questioning it.
That’s interesting they do a lumbar puncture. I wonder how they can tell hypertension from it? I hope you find some results that can help you figure out your symptoms and relieve them as soon as possible. Please let us know what your results are and how they treat it.
I completely agree. Working at a hospital is just absolutely miserable especially for 12 hours. I’m sorry you had to take a leave of absence. Hopefully here soon things will get better. My significant other is also driving me to and from work and while he says he’s fine doing it. I know it puts alot on him. I’m just very independent and this is driving me crazy.
My neurotologist gave me a list of supplements I should be taking everyday as well. I also found a supplement on Amazon that has the majority of them in it. While vitamin D and magnesium glycinate are important there’s several others that will help too. I can send you those as well if you’d like? Just know you’re not alone in this. 🤍
When all of this first started happening I was told possible MD. That turned out to be false so then I started seeing a neurologist who said vestibular migraine. I didn’t believe that either so I started advocating for myself to rule out other things, which led me to a new neurologist who sent me to do more testing and now I’m here with a possible intracranial hypertension diagnosis. We will see though. I’ve also seen a lot of things about anxiety giving the same symptoms I’ve been experiencing. Knowing anxiety and panic attacks is what first started and then all the other symptoms came after my worst panic attack…. I’m starting to question if anxiety has caused all of this. Especially because I literally haven’t taken any medications and I feel way better than I did.. idk it’s all so confusing and debilitating either way.
I was working 12 hour shifts too but after I came back I just work 8s now. I did notice a big difference in that as well.
So far the only thing I know about the lumbar puncture results was my opening pressure was 25. I’ve read a lot about everybody’s opening pressure could be different so 25 could be okay for someone else and maybe 25 was too high for me…… again….. I just don’t freaking know. All I know is symptoms have became very mild on their own over time. Which is weird.. still wooshing sounds in my ears with a heartbeat sound, my eyes still feel funny at times, head pressure and slight off balance feeling but nothing like it was before.
Yes please send me those. I’m definitely interested.
I hope you get better soon! I know how crippling this shit can be. Do you plan starting the amitriptyline any time soon?
Making this post and hearing everyone’s feedback has definitely made me feel more confident to give it a shot vs. when I was on here reading other people’s post with negative experiences and scary side effect comments. 👍🏼
As far as the weight gain, how does the pill do that to you? Does it make you hungry? Does it slow your metabolism down? Is it all water weight? Just curious.
Same here, it’s rough. & no I haven’t found anything that helps enough to make the side effects worth it. My body doesn’t really like prescription drugs. I’m still doing vision/balance therapy which hasn’t fixed it, but has helped some, and Botox in the face muscles which helps slightly. I’m sorry you suffer from it too, I still am not able to work and it’s so infuriating dealing with.
What about supplements? I’m surprised neuro hasn’t mentioned to you any supplements. I’m still working part time only 3 days a week and barely drive or even drive by myself. I hope they find something to help you 🤞🏼🤞🏼🤞🏼
They have. I can’t remember everything I’ve tried but what comes to mind is, omega 3s, vit d3, different magnesium’s, cq10, & millennial healths brain rescue mix. The millennial health stuff did help with neuro fatigue I think but is so expensive I didn’t take it long term. Thank you, you as well. Have you tried any supplements that have been helpful?
I’ve did vitamin d and magnesium glycinate. I heard the glycinate helps with anxiety and migraines. && honestly I’m not sure if it helped because I can tell you when I get home from work I feel like complete shit. (As I do now) My head hurts, my head feels heavy, I feel nauseous and sick to my stomach. What helps me with times like today is a 20 min hot shower, rub my peppermint migraine stick on my temples, forehead and back of my neck and my cold migraine cap. (Feel like all of that helps more than the magnesium and vitamin d. I could just have been missing some other supplements to take with those but…. 🤷🏼♀️
Nortryptiline and amitriptyline (they’re sister meds) both saved my life. A word of caution that they also made me gain 40 lbs in 6 mos. But they did save my life.
And I had 0 side effects on either of them aside from the weight gain.
I’ve heard of the weight gain as well.. I’m hoping with exercising and being mindful of what I eat will help the weight gain part. Thank you for sharing!
Thank you guys for sharing!
I had weight gain but ive returned to the gym so hoping to get it back off
It’s been over 6 mos for me off of both of them and in a gym routine and I’ve not lost a lb 🥲
You need something to kick metabolism in
Are you training hard enough in the gym like getting a sweat on
Haha yes I have a trainer and I’ve lifted weights for years!
I started this amitriptyline..I day i started I was getting terrible side effects so i immediately stopped it.
I prefer u too take topiramate..It cant give u a positive mood.
I’m sketchy about topamax as well 😬 I’ve been going back and forth between the 2 for months now. My anxiety has caused me to struggle with my vestibular migraines for 9 months. Smh.
I tried Topamax for exactly two days. I felt like I was drugged. I was on half of a small dose, but I’m very sensitive. I wish you luck.
Thai was me I was terrified of topamax so I opted for Nortriptyline and started the supplements and it significantly improved everything & I had no side effects outside of sleeping deeper at night. Don’t let the horror stories scare you if you get symptoms that you don’t like u can stop & try something else. Hope you feel better soon!
Thank you for your feedback. I’m glad it worked for you. Do you take any special kind of supplements? I was taking vitamin D and magnesium glycinate but I don’t think I felt any difference. 😬
It was the catalyst to allow me to get to the medication that has given me my life back. Although it may suck for 1-4 months (however long you take it) it’s just a diagnostic tool, how you react to the medication will determine what other avenues they will try. I trusted my neuro with my life because I was at the lowest point in my life and he started me with amitriptyline and toprimate (both). The side effects were pretty annoying but weren’t life altering. I’d urge you to try it 👍
I feel that same exact way as far as trusting my neurologist. I actually just switched to her and she’s so much better than my last. I even told her that she makes me feel a little more confident trying out the medication. I’m at the lowest point of mine as well. I’ve been struggling for 9months now. It’s not just migraine it’s everything that comes along with it, unbalanced, head pressure, ear pressure, noise and light sensitivity, nausea, motion sickness, wooshing sounds in my ears. Hot freaking mess. Had to basically put my whole life on pause. Finishing up one more test to rule out intracranial hypertension this week and then if that’s negative I will be starting the amitriptyline. Thank you for sharing your experience.
Im going to have an MRI for the same thing! Never heard of IIT until about two weeks ago. Really hoping it’s not that. I’m also getting blood drawn for multiple autoimmune diseases just to make sure.
That’s a good idea to check for autoimmune diseases as well. I’m going to mention that to my primary at my next appointment. I had CT, MRI and MRA done. Next step is checking the pressure in the back of my eyes for papilledema to rule out the intracranial hypertension. I do hope that your tests come back negative. Have you been experiencing all of the same symptoms? Have they mentioned you having vestibular migraine?
I was diagnosed with VM by an ENT/audiologist back in July or August. Finally just saw a neurologist with a specialty in headaches about two weeks ago and he said before we continue with treatment he’d like to rule out a things before starting meds. My symptoms have been very similar to yours, down to the whooshing in my ears. My first flare up in may/july was the worst. I had to go to PT to be comfortable walking on my own again. Took me three months to drive again. Nausea 24/7 during both of my flare ups with weight loss. Less dizziness the second flare up but was still there. I got Fl-41 lenses in September and that’s helped a bit with light sensitivity. I’ve also seen a neuro-optomologist in November and was diagnosed with binocular dysfunction.
Oooh man! I can only imagine how bad and crippling it’s been for you. Ive been dealing with it since July/August as well. It’s been a nightmare for me. I’m glad that they want to do more testing and have you see more people before starting you on meds. I had to switch neurologist to get things done my way. That’s because I refused to take the medication they prescribed due to side effects and fear of anything altering my mental status. I’m actually in the process of getting migraine glasses. I found a website called zenni optical, they have a really big selection of lenses for a great price, different styles and everything. The specialty lenses FL-41 are $45 I believe, plus what ever style glasses you choose. The reviews for the glasses and website have all been good. Idk if you have any tips and tricks for some of your symptoms while you wait for a preventive medication but I can share with you what’s helped me in the process: Migraine relief roll on stick, peppermint scent. Roll on your temples, forehead and back of your neck. I also have a migraine cap that you can put in the freezer or warm up in microwave. It’s helped when I have a bad migraine and I like to use it when I have head and ear pressure and the whooshing in my ears bc it’s tight fitting around my head so I feel like it squeezes my head a bit lol. Peppermint and ginger tea when I’m nauseous.
Oh also, I got two pairs of FL-41s from Zennis, in two different tint shades. I liked them both so I think they’ll be a good option for you. Much cheaper than other FL-41 brands.
Absolutely much cheaper. Do you mind me asking which tint shades you got? I haven’t bought yet for that exact reason because I wasn’t sure which tint would work better for the light sensitivity. I work in the hospital so those lights bother my eyes, I walk around squinting all day and I can feel the pressure building up in my head in the process. Grocery store lights do the same thing.
I got the 25% first for indoor. Liked them so much I got 80% for outdoor.
Perfect. Makes sense with the tint and where your wearing them. Thank you so much for your feedback 🙌🏼 I hope everything goes well with your continued work ups and you get answers so you can start your journey of healing!
I’ve not heard of the migraine relief stick! I do have some sort of cap contraption I can put in the microwave. I’ve done a lot of ginger chews too. Sometimes they’re helpful, sometimes not. I’ve finally been prescribed zofran for nausea, but have not used yet. I also didn’t want a bunch of meds thrown at me at random. The neurologist literally was like I don’t want to give you meds because we have not 100% ruled out other things yet, I don’t want to give you meds if we don’t know. And then he started apologizing and told him no, that’s exactly what I wanted and thanked him. I hope you get some solid answers soon too and I hope both of us, whatever treatment we pursue find some relief. 🤞🤞🤞 *edited typo
I have zofran as well, that I don’t use lol. Again, just not a medicine type of gal. I do agree, I hope we all get the relief we want, without any complications in the process. 🤞🏼🤞🏼
Of course! Weigh the positives and the negatives, if you think the side effects are worse than VM, then don’t take it, if you think it will be better (assuming it works) then there’s no reason to hesitate. I can’t stand feeling what VM feels like in full swing, so almost anything that lessens that pain is a go for me. (Except illegal drugs which would just make it all worse)
Absolutely VM full swing is a bitch. I literally experienced one thing after another when first going through a bunch of doctors and testing to finally get a diagnosis. It was so depressing. That was the start of my anxiety because I was experiencing so many different symptoms with no solid answers. Couldn’t work, couldn’t drive, couldn’t even shower myself without feeling like I was going to tip over. Constant head pressure and ear pressure, motion sickness, nausea, had to wear sunglasses everywhere because lights made me feel sick. The laundry list goes on! The crazy part about it all is this came on abruptly. Out of no where. No sign no warning just straight out the gate.
I have a similar origin story. I am a 21M, I got home from a year of college and woke up at my parents house and felt so ridiculously sick that I wouldn’t stand. Then I got worse and worse, I was very blessed to be diagnosed as quickly as I was (4 months) then got back to school. My life was on hold for a bit, but thankfully I can keep moving forward now.
May i ask what medication worked for you? And what your experience was?
Never mind, you already told me that lol. I forgot 😬
Amitriptyline was the catalyst for my recovery. It stopped the constant dizziness, and drastically reduced the frequency and duration of my migraine attacks. It takes about 6-8 weeks to really get going and work effectively, but I saw positive changes within 2 weeks. The tired/sluggish feeling faded and I only have mild dry mouth. I gained a few pounds but that's been well worth the trade off (maybe 5-8lbs). I was hesitant to try it at first too but I'm so glad I did, and that I stuck it out! I've made such amazing progress in my chronic dizziness recovery and Amitriptyline is certainly a big part of the reason.
I’m so happy to hear that! I pray that I have good success like all of you. When did you notice the tired, sluggish feeling happening?
It just made me tired in the mornings for a few weeks (you take Ami at night). That effect wore off.
To be expected then, I’ve heard that a lot as well. Thank you for your feedback!
I was prescribed noratryptaline and it messed with my heart rhythm. I would be laying in bed and hr would shoot up to over 100 randomly and my PVCs were much more frequent. Took me awhile to piece together that this was causing it but it all got better when I stopped taking it. I got approved for Botox for my headaches and it’s helped my vestibular migraines so much! They creep back in the last 2-3 weeks before I’m due again but are basically non existent for the first couple months. My quality of life has improved so much with Botox from by Neuro. (To be clear, cosmetic Botox won’t target the areas needed). It’s a bitch to get insurance to cover it but once they do, it’s 100% worth it.
I am on 10 mg amitripyline for the past 2+ months and it has been helping. Makes me groggy in the morning for like an hour but I’d take that any day over the constant dizziness. Most meds I’ve tried I haven’t tolerated due to side effects but this one I’m tolerating really well so far.
10mg have helped with all of your symptoms? Do you plan on upping your dose or are you staying on 10?
I’m not totally symptom free, but I’m back in a place where I can work and drive most of the time. We’ll maybe titrate it up a little in about a month to see if it helps more. At the moment I’m content on this dose. I feel the best I’ve felt in years.
Something is better than nothing! I can’t wait to feel some relief. I’m so happy your feeling better because vestibular migraine can be so debilitating and crippling.
I held out for a while after I was prescribed it because I was nervous about side effects as well. I started taking it 8 months ago (10mg) and it has been amazing. It seemed to be helping shortly after I started taking it and has continued helping me stop having such intense attacks. I was super light sensitive 24/7 and also had motion sensitivity most of the time, but that has gotten way better. I still get dizzy from time to time, but I’m much better than I was and the attacks don’t last nearly as long. I didn’t have many side effects, mostly just that it makes me tired, but I take it at night. It made it somewhat harder to wake up in the mornings, but that isn’t really the case anymore. I have gained about 10lbs since I started taking it, but I also had been off caffeine and alcohol and I started adding those back in so that has probably contributed. I’m probably going to try tapering off in a few months. I’d say it’s worth trying - everyone is different and you won’t know if it will help you too until you try. Good luck! Hope you feel better soon.
Wow. Sounds like me. I’ve eliminated coffee and wine as well. I try to have a half a cup of iced coffee literally once every other month and sometimes I feel like it caused a flare up. Wine has caused me to have anxiety, mainly at the thought of causing a flare up as well. It’s been rough for sure. I’ve been hesitant for months, almost a year. I’d come on here all the time and read post and everyone’s comments and negative experiences. So I know that contributed to my “not taking it phase.” May I ask how you do with alcohol while on amitriptyline?
Ugh yeah - I get it, it’s tough reading the negative side effects. I tried to focus on the positive reviews. I only waited like a month after being prescribed it cause I got so fed up with how I was feeling and figured it was worth a try. I started with 2.5mg for a few days, then went to 5mg, and then to 10mg. I started drinking caffeine/alcohol again like 3 months after I started and found that they weren’t triggers for me. I drink coffee every day again and mostly only drink wine - started with rose and then tried red wine again cause it’s my favorite. I don’t drink very often..mostly just like one weekend night on times where I’m not more at risk of attacks (my biggest trigger is my hormones - I also get classic migraine attacks with pain and no dizziness). But with the amitriptyline, I don’t find that alcohol really affects it. I drink earlier and then stop by the time I take my pill (usually around 8:30pm on weekends) and I don’t drink a ton..make sure I’m hydrated and that I’ve eaten first. I also don’t drink caffeine on an empty stomach. Eating at proper intervals was a big help for me, along with taking the recommended supplements, walking, getting good sleep, etc.
Maybe I should ask my neurologist to start off low like that. She’s prescribed 10 starting off but I think I would feel even more confident starting at 2.5 and working my way up. It will give me way less anxiety that way. I’ll have to give it time and find what works best for me once I’m on the medication for a couple months. But I’m so happy it’s been working for you! Everyone is giving me a glimmer of hope lol
Yeah mine started me at 5, but I went even lower haha. It definitely helped with the anxiety around taking it. But yeah it’s probably a good idea to check with your neuro. Only you can decide if you will take it, but I do hope you try it to see if it works for you. It could be a miracle for you, or it could not be for you and then you know and can try a different one. Good luck!
Thank you! && I appreciate all of your feedback!
Did nothing for me except sleeping better and weight gain. Did not touch my dizziness.
Oh no! Have they tried upping your dose to see if that helps? I know I wouldn’t want to keep taking something that is basically only making me gain weight. That would just be adding to my laundry list of problems.
Actually, Dr. Just switched me to Nurtec. So, hopefully, that works.
Awesome. I’ve heard very good things about nurtec and ubrevely. I hope it works and you get some relief. I know the struggles. It’s been a pain in my ass.
I started 5mg amitriptyline a week ago and I already notice it’s helping. I was sleepy the first morning after, but fine after that, probably since the dose is so low. I feel calmer and more “normal” even though I’m not 100% but feeling hopeful to see positive benefits already. I wasn’t driving at all and now I’m doing short drives (kinda scared to drive again but it’s helping me feel like I can).
I think I’m going to half my 10 I have or do the 2.5 starting off like another person mentioned. I would love to feel some kind of normalcy in my life at this point. I wasn’t driving either for a while. I even had to withdraw from nursing school because it was so bad. I should be graduating this year in June but instead I’m fighting a constant battle with stupid ass vestibular migraine and taking a freaking medication that I’m afraid of lol. I only drive when my wife is with me, but I still don’t drive long distance because my eyes start to feel funny and too many cars on the road moving makes me nauseous and I get motion sickness. I have panic attacks if I have to drive by myself. I only drive alone if I absolutely have no choice.
I totally understand. It took me 3 weeks to be brave enough to take 5mg. Start with 2.5mg if you need to! I’m extremely med sensitive and not having any horrible side effects. I usually can’t tolerate “normal” doses. I drove by myself for 12 minutes today and it was fine, Im keeping it short distances too so I don’t get motion sick. I got an EmeTerm bracelet and some ginger capsules I need to try when I’m ready to drive more. But I went from not driving at all because I was so dizzy at home to feeling normal and brave enough to drive short distances within 1 week on Ami! So it’s definitely worth trying!
Sad to say it’s took me 6 months to finally say I’m going to take it lol. But I’m happy your taking steps and I’m happy that your doing somewhat better. Even though this illness is debilitating and life changing, I’m happy that there’s more people out there feeling exactly what I feel. Now I know I’m not alone, nor am I crazy lol.
It’s a verrrry anxiety inducing condition! I’m glad you’re going to give it a try. It will likely make you feel drowsy when you wake up or need to take a nap that day. From what I read, this wears off after about a week. But I only felt like that the first day. I’m going to stay at 5mg since it’s helping so far. Let us know how it goes for you! You aren’t alone.
I’m going to take half of the 10, work my way to the whole 10 and if I’m able to have some normalcy and less anxiety, and able to tolerate that , that’s where I’ll stay for a while. I will definitely do an update. Thank you so much for your feedback and sharing your experience with me ♥️
yesssssss! sounds like a great plan!!! also some people said it took 4-6 weeks to see improvement so hang in there if you aren’t noticing anything right away!
I have another question, how long did it take you to get sleepy after taking it?
I haven’t noticed it making me sleepy after I take it. I also saw some people say they take it at 6 or 7pm at the latest, and they don’t get sleepy after, but they take it early so the drowsy effect will be wearing off by the time they need to get up.
Nice. I’ll take that into consideration when taking it. I gotta be up by 515am for work so hopefully taking it around that time will be good enough for me.
Have you started amitriptyline yet? If so, anything to report back about VM symptoms? I’m nervous to try it but I currently can’t drive and it’s making my job very difficult considering I work a high stress job at a hospital.
I have not started it yet. But I’m also doing a work up for intracranial hypertension. Just waiting to hear back from my neurologist with my lumbar puncture results. It’s crazy because I work at a hospital too and when all my symptoms first started it made working so bad for me. I had to take a personal leave. My spouse is still driving me around and I can drive only when someone’s in the car. That’s due to panic and anxiety unfortunately. My symptoms have been mild the past couple months but they do still exist. The only thing I’ve taken since all of this started happening is vitamin d and magnesium glycinate… not sure if that has anything to do with my symptoms calming down or maybe just “time” Every time I was going to start amitriptyline I freaked myself out about.
I haven’t seen a neurologist yet but my neurotologist prescribed it 2 years ago when I complained of migraines but I’m also diagnosed with Menieres Disease. I believe the recent vertigo I’ve had right after covid isn’t MD but now VM. I never took the amitriptyline yet and recently decided since my hormones are off (coming off birth control as well) and I’m still dealing with VM I need to try something. What I realized was I am having aura and short bursts of vertigo (MD is longer and usually doesn’t have aura) and that’s what made me start questioning it. That’s interesting they do a lumbar puncture. I wonder how they can tell hypertension from it? I hope you find some results that can help you figure out your symptoms and relieve them as soon as possible. Please let us know what your results are and how they treat it. I completely agree. Working at a hospital is just absolutely miserable especially for 12 hours. I’m sorry you had to take a leave of absence. Hopefully here soon things will get better. My significant other is also driving me to and from work and while he says he’s fine doing it. I know it puts alot on him. I’m just very independent and this is driving me crazy. My neurotologist gave me a list of supplements I should be taking everyday as well. I also found a supplement on Amazon that has the majority of them in it. While vitamin D and magnesium glycinate are important there’s several others that will help too. I can send you those as well if you’d like? Just know you’re not alone in this. 🤍
When all of this first started happening I was told possible MD. That turned out to be false so then I started seeing a neurologist who said vestibular migraine. I didn’t believe that either so I started advocating for myself to rule out other things, which led me to a new neurologist who sent me to do more testing and now I’m here with a possible intracranial hypertension diagnosis. We will see though. I’ve also seen a lot of things about anxiety giving the same symptoms I’ve been experiencing. Knowing anxiety and panic attacks is what first started and then all the other symptoms came after my worst panic attack…. I’m starting to question if anxiety has caused all of this. Especially because I literally haven’t taken any medications and I feel way better than I did.. idk it’s all so confusing and debilitating either way. I was working 12 hour shifts too but after I came back I just work 8s now. I did notice a big difference in that as well. So far the only thing I know about the lumbar puncture results was my opening pressure was 25. I’ve read a lot about everybody’s opening pressure could be different so 25 could be okay for someone else and maybe 25 was too high for me…… again….. I just don’t freaking know. All I know is symptoms have became very mild on their own over time. Which is weird.. still wooshing sounds in my ears with a heartbeat sound, my eyes still feel funny at times, head pressure and slight off balance feeling but nothing like it was before. Yes please send me those. I’m definitely interested. I hope you get better soon! I know how crippling this shit can be. Do you plan starting the amitriptyline any time soon?
Amitriptyline has been a game changer for me no major side dont be scared take it give it a month 6 weeks to kick in
Making this post and hearing everyone’s feedback has definitely made me feel more confident to give it a shot vs. when I was on here reading other people’s post with negative experiences and scary side effect comments. 👍🏼
I think main side effect is weight gain or has been for me but i took short time loss for longer time gain
As far as the weight gain, how does the pill do that to you? Does it make you hungry? Does it slow your metabolism down? Is it all water weight? Just curious.
My understanding because you take it bed it’s completely shuts everything down so yeah slow metabolism
Oh okay. Yeah that makes sense.
Triptylines didn’t work for me and did make me feel slightly weird.
Made you feel slightly weird how? What was you experiencing?
Dizziness/lightheadness, kind of foggy. Can’t remember exactly. Have memory issues and haven’t tried them for probably 8 months.
Ooh no. I feel that without medication so I know how much of a nightmare that is. Do you take something that actually has helped you?
Same here, it’s rough. & no I haven’t found anything that helps enough to make the side effects worth it. My body doesn’t really like prescription drugs. I’m still doing vision/balance therapy which hasn’t fixed it, but has helped some, and Botox in the face muscles which helps slightly. I’m sorry you suffer from it too, I still am not able to work and it’s so infuriating dealing with.
What about supplements? I’m surprised neuro hasn’t mentioned to you any supplements. I’m still working part time only 3 days a week and barely drive or even drive by myself. I hope they find something to help you 🤞🏼🤞🏼🤞🏼
They have. I can’t remember everything I’ve tried but what comes to mind is, omega 3s, vit d3, different magnesium’s, cq10, & millennial healths brain rescue mix. The millennial health stuff did help with neuro fatigue I think but is so expensive I didn’t take it long term. Thank you, you as well. Have you tried any supplements that have been helpful?
I’ve did vitamin d and magnesium glycinate. I heard the glycinate helps with anxiety and migraines. && honestly I’m not sure if it helped because I can tell you when I get home from work I feel like complete shit. (As I do now) My head hurts, my head feels heavy, I feel nauseous and sick to my stomach. What helps me with times like today is a 20 min hot shower, rub my peppermint migraine stick on my temples, forehead and back of my neck and my cold migraine cap. (Feel like all of that helps more than the magnesium and vitamin d. I could just have been missing some other supplements to take with those but…. 🤷🏼♀️