A Moderate trifecta: Rocking Vertigo, leg Tingling, Anxiety, Next Steps?

Hi everyone, I’m new here, but I’ve found this forum to be the most thorough and also rational/analytical site related to coping with this condition. I’m a 32-year old male architect and musician. Anyway, just looking for some general advice since I’m at this crossroads where I can continue toughing it out with alternative therapies and etc. or try to go on meds. I’ve been “sick” with the symtoms imbalance, visual sensitivity, visual vibration, gaze instability, ear pressure since Dec 1 2016, after getting over the flu and a stressful week at work+thanksgiving travels.

Compared to some people who post here, my symptoms have been manageable. Most days I’m 70%. Some days I’m at 85%, some days I’m at 60%, especially when anxiety is high. I can walk, ride trains and boats, and do most of my activities including work. I really can’t identify any definitive triggers other than lack of sleep and weather changes (though not necessarily barometric changes). The randomness and inability to control the symptoms whatsoever are the main frustrations. Mainly, I’ve had a few really bad days at times where I’ve had an important presentation, concert, etc that’s been totally sabotaged by my condition flaring up. And then good days occurring totally randomly too. But having prided myself on being a highly efficient person, I still feel like I’m not where I’d like to be after 4 months of this; and certain things in my life have fallen by the wayside. But…things could be a lot worse!

Prior to this, I’ve never had migraines before, just the occasional mild tension headache due to stress/viruses/de-hydration. My dad had classic migraines so there is a family history. I have had issues with anxiety/depression, but they never spiraled out of control to the degree that they have been recently.

The symptoms started off in December as textbook occular migraines that were very episodic, lasting 6-8 hours then resolving completely. But they were happening every day for a week. After a week of this, I had a panic attack where I felt lightheaded, numb in limbs and nauseated, possibly triggered by calling a Teledoc who suggested I go to an ER since it might be a stroke…haha! So I went to the ER. Everything came back normal, including my blood sugar. After this, the rocking vertigo and brain fog set in for good. It’s been chronic, though it ebbs and flows in intensity. The first 6 weeks it was manageable but annoying…then the extreme anxiety dropped in. The anxiety was probably triggered by the barrage of tests and unhelpful doctors, but part of it felt very subconscious and beyond my control.

I spent two months seeing a two Neurologists, ENT, GP, etc. had balance testing and a balance center, audio tests, nerve conduction tests, MRI, 3 blood tests including a lyme/toxin/neuropathy test, and everything came back normal, except apparently my “good cholesterol” is very low. But I’m 6’2" 150 LBS so naturally very skinny.

About 6 weeks in, I started having extreme anxiety and insomnia, night sweats, chronic pain, shivering chills, frequent urination. At first it was extreme and episodic, but it eventually cooled off into something more mild, but also more chronic. I started to worry about MS or diabetes, but after multiple doctors found nothing wrong, I started to get a solid grip on the anxiety through reading self-help books, long walks, talking to my parents for hours on end., a strict bedtime relaxation ritual, and the occasional use of Klonopin or Ambien.

About 2 months in, the tingling/coldness/numbness in my left foot started to set in. It drops in randomly, then lingers for 4-5 days and slowly tapers off. It has been triggered by everything from running laps at the gym to sleeping wrong. It’s not necessary correlated to the degree of dizziness I’m feeling. To be honest, it’s starting to bother me as much as the dizziness. It is annoying when I have to stand for long periods of time, like when I play guitar onstage or go to museums. Feels much better with walking. Its possible it’s totally unrelated, like a mild case of sciatica, but given that my arm is involved and its on my left side, I now think its related to the Vestibular Migraine. My GP thinks it anxiety related, but it doesn’t subside on low anxiety days, I’ve noticed.

About two weeks ago, after visiting all the other specialists, I returned to my original Neurologist (the guy who reviewed my MRI from December), who by process of elimination diagnosed me with chronic vestibular migraine, based on similarities to other patients he had. He suggested I go on Amitriptyline 10mg. he said 70% of his VM patients respond positively to this. In general, I prefer to avoid medication. Partially because I’m worried that side effects could make things worse temporarily and I’d have to drop out of work for a couple weeks. I’m holding things together at work now, and I don’t want to lose that foothold I have. But at some point I will have to take a calculated risk and give it a try.

I resolved to try alternative therapies like acupuncture, talk therapy, and vitamin supplements for a few weeks before going on the amitriptyline. The past two weeks I think I’ve been slowly getting better, but I keep having relapses out of the blue and am not sure I’m really making the progress I’d like to see. I’ve had 4 sessions of acupuncture, which I enjoy, but doesn’t seem to have an immediate effect…maybe a slight cumulative effective. I’ve been taking 200mg of Magnesium oxide daily for a week. On Tuesday I felt the best I had felt in months, but then it fell apart and yesterday was a day plagued by anxiety, dizziness and numbness/tingling. Not terrible, but not great either. Last night the insomnia came back. I switched over to the 400mg KAL Magnesium Glycinate last night and added in Vitamin B12.

Questions: Anyway at this time, I’m juggling the dizziness, the left leg+arm numbness/tingling and the anxiety/insomnia. All of them are in check but not necessarily subsiding either. Wondering if I should keep staying the course with the acupuncture and supplements for a few more months, or just say screw it and try the meds? Should I add in the Feverfew or CoQ10? Should I up my dosage since I’m a 6’2" guy (albeit very skinny). Since my symptoms are less severe than some, does that mean I have a decent shot at beating this vs supplements and acupuncture? How many sessions of acupuncture til symptoms abate? How long on the supplements til symptoms abate?

ALSO, since the foot tingling/numbness issue is almost as problematic as the dizziness now, how can I mitigate that? Should I try a different type of acupuncture on my back or something? Supplements?

Given that the dizziness, left leg/foot numbness and the anxiety are probably related, is amytriptaline still the best idea? Or might another drug be more effective, like an SNRI or betablocker? If I go on the meds, I want to avoid being a guinea pig as much as possible. Also, the anxiety sometimes occurs without the dizziness and vice versa, so they are related, but not 100% linked either. Thanks so much for the advice

Welcome to the forum. As someone who had to wait for over 11 years for treatment because VM has been so misunderstood in the past I would suggest you accept amitriptyline and keep going with magnesium, CQ10 and B vitamins. There is nothing to be gained from holding off in my experience, I ended up very very unwell and now have to take both nortriptyline and topiramate to try to settle my diva brain. I also have an arrhythmia, gastric stasis and Alice in wonderland syndrome, all related to VM and as a result of prolonged illness. Amytriptaline will also help with your anxiety and depression so is a win win situation. There are several people on this forum who have really good results with it. We are all different and we all respond in our own way to medication so if that doesn’t work for you there will be something else that will.

It is important to try to stay as positive as possible, to do what you can without over doing it when you feel well and to give yourself a break when you are having a bad day.

I never used to take medication if I could avoid it but VM is different and as it is the brain which is irritable it needs pacifying and from my experience, the sooner the better. I am just beginning to get my life back after more than a decade of losing my job, my friends, most of my hobbies and my financial security. Good luck, I am sure you will be fine as you have caught it early.

Thanks for the response. So in your opinion, it’s hard to really get better without the Amytriptaline? I don’t feel like I’m getting worse, but at this point it’s so hard to judge. I’m cautiously optimistic that I will get better just by focusing on my anxiety, which I’ve definitely been able to wrangle under control. What do you think a fair indicator for “not getting better” would be where I should just give up and go on the meds? Also what’s the difference between Amytriptaline and Nortyprtaline as far as which is more effective for which situations? Any ideas on the tingling/numbness issue?

All I can say is I wasn’t offered any medication for over 11 years and I became progressively worse. At first symptoms were sporadic but each relapse brought with it an extra set of symptoms until the whole situation became a permanent debilitating state and I couldn’t cope on my own any more, had a total meltdown in the doctors waiting room asking for help. Fortunately the duty doctor knew about VM and she was the very first person I had seen who knew how to treat me. She also referred me to a neurologist in London my having been seen and dismissed by 3 local neurologists. So yes, I would suggest you go with the meds and avoid getting worse unnecessarily.

Nortriptyline is related to amitriptyline but has different side effects so is tolerated differently by different bodies. I am incredibly sensitive to medication so could not go above 10mg hence the addition of topiramate. So far so good. Both meds are helping me get my life back slowly but surely.

You may find that just the 10mg of amytriptaline is enough to quash your anxiety and your symptoms and your life will be back to normal. I hope so!

I too am a musician but I play the cello, bass clarinet and tuba so am able to sit down, I could not stand and play if my life depended on it so don’t let the beast get the upper hand!

Makes sense. For those who have tried supplements and accupuncture, when do they start to notice the positive effect? Its raining hard in NYC today and my dizziness/light sensitivity has shot up, also my partial insomnia has been back for a few days,.which always makes things worse. Anxiety and tingling are pretty low today at least! I think I’m going to give it another week or two then take the plunge on the Amytrptaline.

Revolving–do you think the reason you got worse was because of the anxiety and stress of not having answers, a firm diagnosis, or clear plan of treatment for many years? For me, once I got the diagnosis and treatment options two weeks ago and didn’t have to spend tons of time calling unhelpful specialists, doing medical tests, and doing research, a lot of the extreme anxiety started to subside.

I think that was part of the problem for sure but I was diagnosed 3 years ago but there was just no one here who knew how to treat VM so I was left with a diagnosis but no help! I probably should explain, I was diagnosed by a locum ENT Registrar from London who referred me to the neurology department but they didn’t know what VM was at that time!!! Hence the delay in getting treatment until January this year.

hi bigpetey please get on the ami as soon as you feel you can I promise you wont regret it, it might take a few months to kick in but it will be worth it :slight_smile: hang in there!

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Agree, and btw, it took me just 4 DAYS to see improvements with amitriptyline

Definitely starting to think I’ll try the amitriptyline within a couple weeks if there’s not a noticeable improvement with the acupuncture and herbal treatments.

My main concern are the side effects during the initial 2-4 week 10mg adjustment period and whether I will need to take a leave of absence from work even in a normal Ami scenario due to the drowsiness? I work in a very small, open office with little privacy so I can’t be nodding off or spacing out at work, or stumbling to complete sentences. I would plan on taking the dose at 5pm every day as recommended.

Taking a leave shouldn’t be a big problem, but I feel like I would need to be strategic about presenting it so as to not damage my reputation, since this condition doesn’t elicit the same sympathy as say, back surgery!

What was everyone’s experience trying to hold down a 9-5 office job during the initial build up on Ami? In the past couple months, I’ve always been afraid to take Klonopin at work during severe anxiety days because of this drowsy/melting into the floor feeling that makes me even less effective than if I was panicky. The Klonopin seems to help with sleep maintenance though, so I take it around 10pm on the random days when my anxiety-related insomnia starts to creep back. Luckily, I just got a prescription for Ativan, which might be more effective for knocking down anxiety during the day without the druggy side effects? What do you all think?

Holding down a job? I think the hardest part is getting there on time. If you can negotiate a later shift that would be good. I would suggest waiting a little while before you go back to get your dose right. I was off for a total of 6 months including one aborted attempt to go back. Once I was on 20mg of Ami I headed back. Usually you would have a graded return starting on 4 hours and increasing one a month or so. I’ve found it increasingly easier over time to return to ‘normal life’. Now my symptoms are annoying but don’t really stop me doing most things.

I’ve been at work full time since the illness started in December. I’ve only taken a day or two off during the worst moments of insomnia/panic back in early February. In my current, un-medicated state, some days I’d rather not be there due to dizzniness or fatigue, but then on better days, I think it’s good for mental health to be out n’ about with something to do and people to see. I think it’s kept me from getting depressed to feel like I have a purpose and place to go every day. That being said, will things temporarily get worse if I go on the Ami? Or if I’m already holding things together moderately ok, will they only get better, and will the drowsiness be manageable, especially as the dizziness and anxiety starts to subside? Is the drowziness 24-7 for 2-3 weeks or does it come in waves over the course of the day? Or is it bad in the mornings then ok during the afternoons and early evenings?

I think I can “fake it” from 9-noon if I’m zonked… as long as I’d be able to be alert and highly productive from noon-5 to make up for lost time.

It will make it harder to get up, but all symptoms are likely to be better.

Well done you for working the whole time. I was relatively worse I suspect. At its height I would have a 13 hour vestibular migraine every two days and get no more than 3 hours sleep on the good night!

that’s interesting that yours is very episodic. Other than my initial bout of episodic occular migraines in December, Mine is very consistent: the dizzyness, gaze instability, motion + light sensitivity is there 24/7. There are periods that are worse/better, but there worsening/improving sensation is very gradual over many hours or days even. My neurologist still thought this was consistent with other Vestibular Migraine patients he’s seen.

I think I’ll just give them a heads up that mornings are going to be tough for a few weeks, or even set up a batch of off-site meetings those weeks at 10am to give me a little more breathing room in the morning. Those are always fun and laid back, we just walk around the buildings and take notes on construction progress.

bigpetey go slow taking it ie cut it in half then do that for 2 weeks then take the whole 10mg and you really shouldn’t notice much sedation I go to work for 9am and have to travel on two buses to get there and get up and make sure my sons had his breakfast and got to school and im on 50mg its not that bad unless your super sensitive!

Oh those were just the attacks. I had 24/7 dizziness, tinnitus ,hours long bouts of nausea, rocking, noise sensitivity, anxiety you name the MAV symptom!

Now I’m going long stretches without dizziness and generally my tinnitus is less bad. I even get moments (just moments so far) where I feel completely normal again (if I can ignore the tinnitus !)

Just had two pretty good days in a row. weather in NYC is much better, and had the chance to get out and walk around and explore the city, plus had acupuncture on Saturday. Still having some issues where my eyes are taking a little longer than usual to adjust to different lighting levels. Hoping this is the beginning of a major upswing, but experience tells me not to get overly optimistic.

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Hi bigpetey
I am on nortrypline 20 mg at 5 pm and doing much better. I started with 10 mg, did not notice much side effect. You can take in evening and I am sure you can work full time. You will see right away some difference in your condition. Take care.

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