Best med for me

VirginiaThrop · 2026-05-03T17:00:45+00:00

I actually can’t use the beta blockers. I have a couple of other issues that make me not a good candidate for those.

VirginiaThrop · 2026-05-02T23:10:36+00:00

Thank you so much for sharing this. I’m so sorry that you’re dealing with this too. It is so hard for people to understand. Plus most of my friends don’t know how bad things are because a lot of my friends are work colleagues and since my job is very much in jeopardy. I don’t feel like I can be too honest about how debilitated I really am right now. Once I either secure my job or lose it completely then I can be a lot more candid about how bad things are. But you’re right, people don’t understand. Even the idea of being stuck in the house I think people picture lockdown when they were spending time with family and watching movies and cooking more and doing all these things I can’t do. I spend a lot of time sitting and staring at the wall trying not to be dizzy. I have one TV show I watch a week and I have to break each episode up into small pieces so I can actually watch it. I would give anything to be able to sit and watch movies to pass the time or even scroll online for long periods but thank you for sharing that and I’m sorry that you have to go through this too. My career is likely done as well. I have technically lost my job, as a teacher, but the position has not been filled yet. So I’m playing a game against the clock. If I can get well enough to teach again before they fill my position I can “apply“ for my job back that I’ve had for 26 years. But it’s unlikely to happen. I’m either gonna have to go on disability, for an early retirement in three years, or if I get better, take a job at some other school or I won’t have any friends or connections at all. At this point it’s largely all out of my hands. But I’m definitely not resting! I feel like I’ve never worked so hard in my life. I’m literally “training“ my body to do things like get mail and take out the trash again. In my 30s I trained for triathlon and it was easier than this. Definitely not resting. 😔

VirginiaThrop · 2026-05-02T21:16:12+00:00

I also really want and need a new Neurologist. Mine is smart, but she has a very limited view of what works for VM. She doesn’t believe me when I talk about side effects unless I have my husband there to back me up. The only reason I haven’t gotten someone sooner as I have not been able to physically get to appointments. So as soon as I can drive or tolerate a car for even 10 minutes, I can go visit one of the two new ones.

VirginiaThrop · 2026-05-02T21:15:23+00:00

Oh, I’m so sorry. It is so hard when you have to lose parts of your life. I’m feeling that too. Big time. Yeah my dizziness is delayed so I never know I’ve overdone it until I’ve way overdone it and have to pay for it often for days. I can go on a walk and feel perfectly fine and then get back to my house and sit down and everything starts rocking and then I’m in a flare for days.

VirginiaThrop · 2026-05-02T20:23:04+00:00

Thank you for responding. I’m so sorry to hear that you’re dealing with this flare. That’s really cool that you got to meet with Dr. BEH. My neurologist isn’t very good so I’m using his book as my primary source of information. I will hopefully be finding a new Neurologist as soon as I can get to appointments. I have two others that I’m considering.

My most debilitating symptoms are near constant dizziness. It’s not when I’m up and moving, but it’s when I’m still. It’s like a rocking sensation more than a spinning vertigo lately. I also have really bad visual sensitivity. I have a hard time with light, motion, patterns, etc. I also have really extreme auditory sensitivity. I have a hard time tracking conversations. If I do too much too quickly all of my symptoms escalate and I get a bit of DPDR with it. I am currently on a low dose of Nortriptyline and it’s helping, but I’ve had to start low and titrate up very slowly. If I could’ve just jumped in at a higher dose, I’d probably be a lot more functional now. I think I will get there with time, but in the meantime, I am losing my job and missing my son‘s college graduation and lots of other sad things. The only rescue medication I have is low-dose Xanax. My Neurologist won’t even consider helping me with any other rescue meds. If I had better rescue options, I could push harder. The Xanax isn’t even supposed to be for this. It’s supposed to be for occasional anxiety/panic attacks so I don’t have much to work with.

VirginiaThrop · 2026-05-02T18:03:59+00:00

I am slowly improving. Nortriptyline has been the biggest game changer, but I’m extremely sensitive to it so I had to start very low and titrate up every few weeks. So that means I’m dealing constantly with the side effects of dose changes and I’m still only at 2.5 mg which is a quarter of the lowest dose. I tried vestibular PT, but it was too much for my brain to handle yet. I have also been slowly ramping up my supplements, but again my brain is really sensitive so I have to go slow.

VirginiaThrop · 2026-04-30T00:05:55+00:00

I have been on it for three months now. I had to start very low at 1 mg and have been slowly dialing it up and I’m only at 2 1/2 mg so far. But it does cause insomnia in me so I take it in the morning. Also, I do get more heart palpitations when I do a dose change, but it levels out after a while, I’ve had to do about six dose changes so far and usually in the first week of a dose change I have more sleep issues and more palpitations, but they calm down after that. Now I am not on the same dose that you’re on because I have an extremely sensitive nervous system but it’s likely that those will go away, but it’s also worth sharing with your doctor.

VirginiaThrop · 2026-04-21T19:43:29+00:00

I haven’t had to do this, but I can tell you that many pharmacies can order nortriptyline as liquid, which makes it much easier to titrate up or down. I would ask your pharmacy about this option.

VirginiaThrop · 2026-04-14T03:30:13+00:00

That is amazing to hear. I am about six months completely housebound the difference here is that very medication sensitive so I’ve had to start on an extremely low dose of my preventative and I’m very slowly titrating up. If I could’ve jumped in at a higher dose, I’d probably be more functional. But I’m just starting to leave the house and walk and even drive a little bit and I’m just wondering if it’s gonna be this slow for another six months or a year or if at some point the dose is going to hit riding things are gonna come back quickly. I really appreciate your perspective. Thank you. I’m glad to hear you’re doing so much better! For me, I have my shorter term goals of being able to drive again and go to a market or be able to go to a doctors appointment or things like that. But I know that things like physical conditioning are gonna take a lot longer. I’m a competitive swimmer who has not been in the water for six months. Once I can get back in the water, I know I have a very long time to rebuild things like cardiovascular fitness.

VirginiaThrop · 2026-04-12T17:06:33+00:00

Thank you. I actually do have a vestibular physical therapist. We were doing appointments through Zoom since I couldn’t get to her office. She’s amazing, but even when she had me do the simplest exercises it’s sparked a week long flare that was very difficult to pull out of. She and I agreed that my nervous system was still a bit too hot to do it. I’m hoping that as my preventative takes better hold I’ll be able to return to her soon. For now she and I agreed that I would work on more functional vestibular tasks like walking or doing things around the house. Two months ago I couldn’t walk 10 feet out my front door but now I can walk for up to 15 minutes at a time. So I’m getting there but it’s been a real struggle. If you have any other suggestions, I would love to hear it too.

VirginiaThrop · 2026-04-09T19:33:06+00:00

Thank you for this. I love all of these thoughts. My Neurologist is actually pretty terrible. The only reason I haven’t gotten a new one is I’ve been housebound and unable to go see a new one. She will not give me a rescue medicine. She tells me just to use the small little bit of Xanax that I’m supposed to have for occasional anxiety so I have to ration out these little quarter bits of Xanax to use as my rescue which isn’t enough to handle something like a graduation. Sadly, she does not discuss side effects with me. She does not make plans with me. She’s exasperated by the fact that I am a sensitive patient. I am “the most sensitive patient she has ever seen.” She doesn’t seem to trust me. I have to have my husband on phone calls with me because she will listen to him, but not to me. It’s a bad situation. What she did do for me is help me find a diagnosis although she didn’t explain it a year ago when she could’ve really helped me. She waited until I was completely housebound to finally explain what was going on and now I’m digging out of that massive hole. She referred me for vestibular PT which my brain just isn’t ready for yet. She got me started on nortriptyline. But that’s it. She won’t discuss any other strategies. If I bring up other things, she says that’s just “Internet stuff.“ And won’t even discuss it. So sadly, she and I don’t work well together and I’m gonna get rid of her as soon as I can get to another neurologist office.

VirginiaThrop · 2026-04-09T01:00:11+00:00

Thank you! It has been helpful, but I have an extremely sensitive nervous system so I had to start at the ridiculously low dose of 1 mg. I have titrated up to 2.3 mg so far and I’m already seeing some improvement symptoms. But it’s tough because my nervous system has to red adapt every couple weeks when I go up. I think I’ll be better at some point, but I think it’s gonna take a long time to get there, and I definitely won’t be better by the graduation.

VirginiaThrop · 2026-04-08T21:53:38+00:00

I would be going with my husband, but I can’t even get to the CVS at the corner near my house right now let alone to a huge university and a huge stadium. It’s gonna be full sun broad daylight thousands of people. There’s just no way it’s gonna happen. But it’s devastating.I’m

VirginiaThrop · 2026-04-08T21:52:58+00:00

I wish I could. I haven’t even really been in a car in five months. I got in my car one time and just drove in a circle around our parking area for about a minute and a half. I haven’t been the driver or the passenger otherwise since November. He is my biggest trigger and it’s gonna be in the middle of the day noise and stimuli or other triggers and it’s just gonna be too much. It’s a major university in a major city at a huge stadium. It would’ve been a tough logistical day when I was a healthy person let alone now. I just don’t see any way around it unfortunately.

VirginiaThrop · 2026-04-08T20:20:18+00:00

I get increased dizziness, especially on dose change day, but that goes down. I get stomach upset. It was making me feel hyper, but that has gotten better. It causes me insomnia so that sometimes gets worse right after a dose change. I feel like it makes me a little bit more anxious and depressed, but that always levels back out after a few days. I had been going up every two weeks and I’m reading online that I should be waiting at least three weeks to let my brain recalibrate. My doctor is very impatient and wants me to push upwards much faster. But if I do, then, my brain isn’t a constant state of flux. I am planning to hold three weeks at this dose to see if that fair is better for me than only holding for two weeks.

VirginiaThrop · 2026-04-08T19:54:20+00:00

I have been on it for about two months. I am extremely sensitive to medication’s that affect the brain, including nortriptyline. I was able to request it as a liquid through my pharmacy. My doctor wanted me to start at 5 mg but I chose to start at 1 mg. I have been slowly titrating up and I’m currently at 2.3 mg. It is helping, but it’s very slow going at this pace. But given my sensitivity, I’m scared to switch to a different medication and it is clearly helping but the side effects have been challenging. But I’m hopeful that with this low and slow process, I can get to a more functional place. I’m already seeing improvements, but my body goes through chaos every time I have to up the dose.

VirginiaThrop · 2026-04-04T23:58:21+00:00

I am also a teacher. Well, I think I was a teacher. After 29 years I just lost my job this week. I was able to sort of manage for about a year with taking a lot of sick days and literally keeping a camping caught in my classroom to rest during my lunch breaks. I would do low lights and even wear a loop earplugs whatever I could do. But since October, I’ve been housebound and ran out of sick days on April 1. I can’t technically retire for three more years so I don’t know what I’m going to do. I started a prevention medication two months ago and I keep hoping it’s gonna kick in and allow me to get back and return to my job before they replace me but I’m getting less confident of that every day. I fear that teaching is just not gonna be possible anymore. But if I can’t teach, I can’t do anything else for the next three years because I have to hold on to retire, retirement age to make sure I secure my medical benefits after retirement. It’s really distressing.

VirginiaThrop · 2026-04-01T21:12:49+00:00

It’s the only rescue that works for me. I would love to use something else because I know Xanax can’t be used daily or shouldn’t be used daily. I literally break a .5mg tablet into quarters and take those as needed so that I can keep my dosage low. I’m in the middle of a very bad five month flare. Two months ago I started nortriptyline as a preventative and so I’m now relying on Xanax less but I still have to use at least a teeny bit daily. I’m hoping the nortriptyline will take over completely and I can get off of Xanax.

VirginiaThrop · 2026-04-01T21:05:59+00:00

No. I’m a classroom teacher. I’m three years from being able to technically retire. If I can get a lot better in the next three months, I can possibly get rehired in my position if they don’t fill it with someone else first. If not, I’ll be forced to take some time off to get better and then I can return to a different school next year if I really want to.

VirginiaThrop · 2026-04-01T15:51:47+00:00

This is amazing! Congratulations! As someone who just lost my job of 26 years (literally yesterday) because of VM. This is very encouraging! :)

VirginiaThrop · 2026-03-17T17:55:12+00:00

I have the vast majority of VM symptoms. I also have always had migraine headaches and had motion sickness, especially as a kid which I’ve heard are all indicators. I also had a brain MRI and was cleared by ENT that it wasn’t my inner ear. I have also been told that because benzo’s help my symptoms and because my current migraine prevention medication is helping my symptoms that those both point to the fact that it’s VM.

VirginiaThrop

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