I’m Ellie, I’ve been looking at this forum for the last few weeks for information but its my first time posting.
I have had symptoms for around the last 6 weeks now, started with catching a cold from my son with runny nose, feeling a bit under the weather for a few days. I have thought I was prone to sinusitis for the last few years though now wonder whether some of these episodes could have been migraine, but I thought this cold then became sinusitis - I felt congested with facial pressure but no fever and only clear nasal discharge. I started using some high dose nasal steroid which didn’t seem to help and then developed this feeling of being constantly off balance with headaches and some nausea. The headaches were often right frontal, but sometimes all round the head and sometimes pain behind the nose/cheeks. I spoke to my GP after a few days and started 10mg amitriptyline for sleep/headache. I felt much worse the day after taking it so didn’t take it the next few nights and ended up trying some sumatriptan as somebody suggested it could be migraine, the first time I took sumatriptan it really helped and I felt almost normal again for a few hours. I then started taking amitriptyline again and after about 4 nights my symptoms were almost better. I found it really sedating and thought I would struggle at work so stopped it again and for a few days I was okay but then the headaches and off balance feeling then came back. I have started nortriptyline and been taking this for 6 days now at 10mg. I am also taking propranolol 40mg twice daily, was taking this for benign tremor some days but I have doubled the dose and been taking regularly to see if it would help as I tolerate it fine. I have also had an intermittent but persistent muscle twitch of my left upper arm near the elbow with a few brief twitches in other places which aren’t sustained, persistent eustachian tube dysfunction and real brain slowness with sometimes mixing words up or just finding things more of an effort than usual. The headaches and off balance feeling are better than they were but the nortriptyline doesn’t seem to have worked as well or as quickly as the amitriptyline but I was on annual leave when taking it so maybe was more relaxed.
Anyway, sorry it’s so long. It seems to have come a bit out of the blue although I have had a couple of migraines with aura as a teenager and some periods of sinusitis and headaches which may have been migraine in the last couple of years. I was wondering if you thought this sounds like MAV (have diagnosed myself with several things going along but seems to fit best with MAV) and was wondering if anybody had any advice about medication - should i just carry on with nortriptyline (I know it hasn’t been long) or go back to amitriptyline? My symptoms always seem better in the afternoons and evenings so sometimes wonder if some of it could be side effects.
Thanks for any thoughts and also for the forum, it was really a relief to find it and feel like I wasn’t going mad or making it up!
Welcome. My advice is brief but my experience is long. VM is a chronic illness very similar to recovering from a brain trauma. It takes a very long time. Try to adjust your thinking from the hours and days of normal illness to a timeframe that extends months. All the meds you’ve tried are popular meds for VM. I’m frankly astounded you managed to have a doctor who knows what to do. Usually we flounder around for months or years to get where you are. These meds take time to work. They cannot be used like aspirin in a quick as needed way. And they unfortunately almost always make you feel worse before you get better. Take them consistently. Ramp up low and slow. This is a test of your fortitude.
Read our wikis. Do searches within the site on your symptoms, medication or nearly any other aspect of VM.
You will feel better with time. We’re here for you.
Hi Ellie and welcome. By your symptoms and very typical history You certainly sound as if you could easily be a MAV candidate. @flutters advice is good advice. Spot on. I can see you are well in the way to working this seemingly ridiculous condition out for yourself. You have already developed a suspicion that the sinusitis headaches are in fact migraine (oh I wish you could persuade a certain friend of mine of that. I have failed for years). So will try to add in a couple of bits of info which might help you choose your next step on the long haul road which is MAV. Propranalol is super great for migraine prevention. 80mg daily is the starting dose for migraine prevention. Great move to increase it as you know you can tolerate it. Might, long term, be all you will need. Bad news is it can sometimes take longer time to work than the tricyclics like Amitriptyline and Nortriptyline. It can stop migraine dead in its tracks and quickly for some but it tends to take much longer with the vestibular stuff. Ami and Nori, as we call them, are alternative preventatives but can also be taken as abortives rather in the same way you took the sumatriptan. As @flutters said preventatives (there are 100 listed elsewhere on this site) are taken every day for months/years and after a while should prevent most, but not all attacks from happening in the first place. Sumatriptan, Aspirin and countless others are abortives taken ‘as n when,’ like Aspirin.
You had instant success with Ami. Many would envy that. Which to take long term as a preventative? Here in UK top three recommended NHS drugs for prevention are, in order of preference, Propranolol, Amitriptyline then Topiramate (Topamax). You are already on Propranolol. Give it some time to work if you can. You may not need anything else as a preventative. Amitriptyline has a huge success rate too. Nortriptyline is it’s ‘cousin’. Some consultants prescribe it as a first choice because it has lower side effect profile… Some people tend to resort to it if they find they cannot cope with side effects of Ami. Both will initially make you tired as indeed will Propranolol for many initiated but that tends to wear off after a week or two. Many people find they are better in the afternoons and evenings or worse in the mornings whichever way you want to think of it. I am always like that myself. Something to do with Circadian Rhythm I was told. Helen
And try not to get discouraged. A lot of people get lucky on the first or second med they try. Some of us have had to keep on trying a lot longer. Most of us eventually find something that works or works well enough. This is a chronic, sometimes disabling illness. Coming to acceptance is a remedy in itself.
Do make sure you look at the lifestyle modifications, too. There are many non-pharmaceutical things we can do to help our hyperactive, ill brains. First and most important, educate yourself to the point you feel like you have an understanding and some control. Look at the diets. Get hydrated and maintain decent electrolytes. Mind your sleep hygiene. Exercise. Meditate, pray or de-stress however that looks for you personally. Learn your triggers and avoid them if you can. This site is replete with tricks and tips. Nothing works for everyone. Mileage varies. But there are options, lots of options.
Thanks for all the advice, very helpful and I know I need to be more patient! Its hard adjusting from a rather frenetic lifestyle, which I’m sure has contributed in the first place…
Try to adjust your thinking from the hours and days of normal illness to a timeframe that extends months.
Marie, did you intend to write something else?