Hi All - I’ve suffered from MAV for approximately 8 years now. I’ve been on a (the?) migraine diet for the past 5 years (since receiving my diagnosis from Dr. Rauch) with limited success in curbing my overall symptoms. For the past several months I have also been under the care of a psychiatrist to help me with the severe anxiety I’ve developed as a result of my condition.
I feel like I’ve spent the better part of the past 8 years watching life pass me by. I try to keep my mind occupied on trivial matters throughout the day and do have moments of happiness and fulfillment but in general I have not been able to be fully comfortable or relaxed since onset.
In addition to dietary changes, I’m currently on nortriptyline(only 10mg right now, with orders to bump up to 20) though I have major anxieties related to increasing the dosage for I’m afraid that the side effects may be so severe as to turn already-difficult nights where I’m unable to fall asleep due to rocking sensations and other symptoms into something even worse. (I often feel as though there’s no ground beneath me and/or I’m perilously close to falling through the earth and into a free-fall. I’m afraid that medication may exacerbate these symptoms causing panic to set it far worse than what I’m grown somewhat accustom to). However, unlike the last time I was prescribed medication a few years ago, I am more commited to sticking to a regimen now because of major life changes - for one, my wife recently found out that she’s pregnant for the first time - which are forcing me to redouble my efforts.
I truly feel as though light sensitivity plays the largest role in triggering at least some of my symptoms. When I’m around certain light I know that brain fog is going to set in, I’ll feel “shaky” and my sensations will either be heightened or lessened, but certainly changed. Bright and flourescent lighting can be a killer, but even in my office, where I turn off the bright lights and instead use lamps, I experience similar symptoms if I’m there long enough. I can very much “feel” the affects light has on me and my sensations. Has anyone had success in treating this symptom in particular? Avoiding such situations altogether is not possible, so I would like to explore treatments.
If you read through some of my posts, you will see that I am a very similar case to you. My symptoms were nothing short of horrendous and trying to fall asleep at night due to the violent rocking was a nightmare. I have had friends/family stay with me and hold me during the night because I would fall out of the bed!!
It was only after I kept pushing up on the Nori, that after about 35mgs things started to ease up. Now I’m at 75mg (plus on 1200mgs Gabapentin) and the rocking is still there every night but at about 10%.
Try and bump up in 5mg doses every 3 weeks, that’s what I did. The trick is (to quote Kelley) is to sneak up on the brain and go ‘low and slow’.
In terms of dealing with light, I am now wearing these new glasses by Migralens (google them), to help deal with fluro lighting and computer screens at work.
I will happily support you in your Nori meds increases. Stay strong.
Thank you so much for your post. I was supposed to fly to Florida at 9:00am (from Massachusetts) with my wife to join my parents and sister on a week-long vacation. I tried falling asleep last night at 10:30, but the rocking inside was so bad that I was only able to toss and turn until about 12:30 or so. From then on, I was up on my laptop for the rest of the night (I didn’t fall asleep until 8:30am). I e-mailed my parents at 3:45am and soon after broke the news to my worried wife that there was simply no way that I could go with my symptoms so severe. I hate the fact that my limitations very directly have a significant impact on the people I love most. I cannot keep going on like this.
I will check out the migralens - thank you. I’ve tried sunglasses before to no noticable affect, but I understand that migralens are different. How dark are the lens? I ask because when I did try wearing sunglasses or when I keep the lighting in my office to a real minimum, I end up straining terribly to read. This may or may not be better than the alternative of unbearly bright artificial light or even a small desk lamp shining down on the papers I’m reading, as it seems anything I do will trigger an attack.
I will also start back up on nortriptyline tomorrow. I’m definitely putting it on hold again tonight as I slept only 3-4 hours or so last night (or this morning, I should say) and I’ve had the day from hell in terms of dizziness. (I had a full-on panic attack during the day - which is very very rare for me, as when it’s light outside I tend to manage my anxiety far, far better). Thank you so much for your support!
OK, I once again delayed taking the notriptyline. I usually don’t have too much trouble falling asleep (though I do wake up suddenly every once in a while), but these past few nights have been terrible. Usually changing my position helps alleviate some uncomfortable symptoms, but last night there was nothing I could do to relax, and I started to panic terribly. I was sitting up in bed and it felt as though there was no back to the bed. I don’t even know how to explain it.
I’m always afraid that every symptom is a new symptom which may be permanent and may become unbearable for me to cope with. Does anyone else deal with this? 8 years later and I’m convinced that I’m going through something for the “first time”, all the time!