After 7 months I finally got to see a neurologist who has prescribed Endep (amitriptoling) starting at 10mg and was to tirate up to whatever I thought suited me. I was up to 35mg as of yesterday but after a few days of rapid heart beat and anxiety (ended up on ECG machine at drs yesterday) I’m back down to 30mg and going gradually off the pizotofen I had been prescribed by my local GP. When I started the Endep, within days I felt like a fog had lifted off me and my neck/shoulder pain which had been terrible was hardly there, and up until this past Sunday had not shed a tear either. Now, almost 4 weeks later I’m feeling like I’m slipping. Last night after my first shift at work in weeks, mainly desk work for 6 hours, I was fighting a ‘normal’ migraine and today I’m in bed, exhausted and terrible neck/shoulder pain, headache and teary…deep breath…the only thing I can put the ‘shift’ down to is hormonal as I got my period on Monday. Sunday I had the racing heart, was teary and exhausted. I’m hoping once it is finished I might come good again. Sorry I just had to write it somewhere for someone who might have something to say. I’m trying so hard to be positive…
I’ve started a blog since being sick too, but its about food, if you want a read its www.agluttonouswife.blogspot.com.au its been a great source of positivity for me during this dark period.
Sorry to hear you are having such a rough time.This condition sucks to say the least.I’m not a woman but I have read on here about hormones triggering things.Makes it more complicated for women I guess.The ami might take a while to get in your system before you start to feel even better hopefully.It’s a process and you should give yourself a pat on the back for working your first shift back.That was a challenge and exhausting I’m sure.
Here’s hoping for better days for you!
Thanks James, I’ll do some more research into the hormone side of things.
This is just such a tough road isn’t it, it makes me feel so isolated and alone as how do you best describe it to your loved ones who want you well.
I’m feeling quiet hopeless at the moment and not sure what to do…
I’m one of those affected by hormones. I have daily symptoms but a strong monthly pattern to which days are worse, including a migraine headache that keeps me in bed 4-5 days straight each month during my period. I’ve tried 4 different birth control pills, took a break from hormonal treatments for about a year, and am now on my 3rd attempt at hormone replacement therapy. If this doesn’t work I’ll go back to trying other drug therapies. I wish I had a more straightforward solution to the hormone issues but it’s trial and error, just like other treatments. You are not alone though!
I also noticed that you mentioned working at a desk for 6 hours. Were you on the computer? Computer use is a major trigger for many people with vestibular migraine.
My job isn’t just on the computer, its function work too. I haven’t really found the computer is a problem, thank god as its my lifeline at the moment!!!
I’m feeling alot better today, thank goodness, which leads me to think hormones is a problem, but will chart what happens over the next few months. It amazes me why doesn’t the one medication work for all of us?? We are such mysteries!!
Thanks again for replying, it really helps not feeling so alone. Jan x
Hi there Sarah
Just wondering if you have had any success? I have been dealing with MAV for over a year now and I sound exactly like you in regards to your migraines and cycles. I too end up in bed 4-5 days straight. I am supposed to return to work in August and I work on a computer all day. Im am now up to 45mg of Ami and thinking of upping my dose as its has not helped with the migraines at all. My MAV symptoms particularly flare up during my cycle and it though it takes you back to square one symptom wise.
Hi Jo, I’m looking back at the post that you responded to and saw that I was in the middle of trying different hormone treatments. That did NOT work! I ended up on venlafaxine (generic Effexor) and that worked really well. I took it for 5 years and got my migraines down to less than 1 a month. Unfortunately, I gained so much weight that I stopped taking it in December. My symptoms are all coming back now and still appear to follow a hormonal pattern. I’m going to the doctor in a few weeks to see what I should try next.
Hi. It’s good you were able to come back and incidentally give us an update. Guess your experience just proves the ‘preventatives’ are just that, they prevent occurrence. For women hormones are such a powerful force. Real shame such a side effect meant you had to quit after doing so well. And they reckon Venlafaxine is weight neutral. Well you aren’t the first on here to disprove that theory. Helen