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
hang in there!