I was recently diagnosed with VM (or what my Dr is calling “migraine variant”) this past week. This has been quite the journey for me thus far. As a child I suffered from childhood epilepsy, but have been seizure free for 26 years and off medication for 20. My seizures were triggered by strobe lights, mini blinds, and various light sensitivities as well as hormonal fluctuations (oh the joys of being a woman) so I have always been sensitive to certain patterns, strobes etc, and avoid when possible.
Around this time last year I was noticing more dizzy spells around what would be my menstruation. I had the Mirena IUD to assist with regulating my hormones since I am sensitive to estrogen and honestly that time of the month just gave me dizzy spells and made me want to sleep all day. I assumed maybe my hormones were messing with me and had it taken out. tried to nuva ring and hated it so put the Mirena back in. During all this time I start noticing that at my work meetings at the office I am having these strange dizzy spells that werent always related to menstration. In fact, one time during a 1:1 meeting with my boss I got super dizzy with intense anxiety and asked to take a bathroom break. I thought maybe it was hormones, maybe it was my epilepsy coming back. I thought maybe I’m going through menopause? I’m 35 so all clear there. I bought some light filtering glasses to help with meetings at work. Luckily I work at home and out in the field mostly so I can really limit my time in the fluorescent lighting. But literally every time I would get dizzy, a panic attack, and tingling sensation in the pack of my head. Unfortunately all the glasses have done is buy me some time before the attack sets in.
I am a behavior analyst by profession so I began violently recording my behavior patterns before I even got to the neurologist. I’ve got the migraine tracking app and have started the diet…which has been rough. Of course the blood work and MRI all came back normal. Thus the diagnosis. Dr. prescribed me Cambia as an abortive and Topamax to take daily. The most difficult part of this experience has been the emotional toll it has taken on me. The intense anxiety I experience as I go to the grocery store wearing the light filtering glasses that don’t work to read the label of the spaghetti sauce to make sure it doesn’t have any darn onions in it is intense.
Today this happened. I went to the store to get food to really dive into the elimination diet and I got an attack while waiting in line. So I had to pretend that I left my wallet in the car so I could get natural light, cry, and give myself a pep talk before going back in (wearing my 3rd pair of light filtering glasses that dont work). I literally can’t go into any store with fluorescent lighting right now and it’s leaving me feeling hopeless (see you later Target, guess we had to break up sooner or later). This diagnosis is also coming at a time when my fiance and I were discussing possibly starting a family (which is funny because at 35 I’m apparently geriatric?!) Also, I play drums so you know migraines and vestibular issues are wonderful with drums.
So, that’s me in a long synopsis. I am really hoping to learn from others, and find as much info/support I can. Thanks in advance if you actually read this, it means a lot to sad (and silly) woman wearing grinch pjs like me.
Yes, I read yr post, every word to the very end and,do you know, I could just have written it myself. Somewhere on here you could find my version of the Grocery Store several times and it’s near identical. So, I guess you are One of Us. Do join the gang. You’ll find support here amongst Them Who Knows exactly what you are going through. Been there and done that. Many times.
Could well be fluctuating hormones of early perimenopause. MAV is notoriously hormone linked as you seem already to have discovered. I’ve had it for 15 years and studied it intensely for five/six I suppose and see distinct patterns emerging with some but not all female MAVers. Quite often starts as migraine in childhood, goes away completely and returns as dizziness later, post partum, at menopause (me). I’m no medic, don’t know much technically about epilepsy really but interestingly they do use anticonvulsants to treat both conditions as you’ve discovered. As you don’t mention otherwise I assume you are tolerating the Topamax well? Preventatives take time to work, months often and meanwhile another part of prevention strategy is trigger avoidance. Get somebody else to do the grocery store maybe, As you discovered the light-filtering glasses may only buy you time. Some people find such ‘plasters’ and the diet are sufficient, others don’t. You may need to wait til the drug builds up the tolerance thresholds sufficiently which could be a while, to obtain more relief. Restaurants and supermarkets were my first and most persistent triggers. I ended up avoiding them totally long term. (My story is under “Personal Diaries’ should you want to study it further). Recovery is generally very gradual, and variable. The hypersensitivity of your system varies day to day, hour to hour even, and your reaction to triggers is obviously proportional. Any questions, just get in touch. Seems a bit quiet currently but others will be in touch with you soon for sure, and you will find the Wiki section very informative, and can always use Search facility for specifics. Tons of archive material here. Helen
Me too! Only thing that bothers me is the shifting of weight as I operate the kick pedal. I got motion sick a few times, once while on stage. But, still its worth suffering, gotta keep doing what you love!
I’ve been there too, sometimes I would get it just staring at a computer screen, but yeah grocery stores were the worst for a while. And yes, I remember crying and giving myself a pep talk before getting back into my office filled with fluorescent lights which I felt were burning my eyes and skin.
Anyways welcome, you’re in good company here. I’m about 2 years into this thing and I’m almost done with it, although I’m sure it will linger another year or so. The biggest improvements came with medication for me, but others seem to do fine with just some lifestyle changes and diet.
Thanks so much for the info! So far I’ve even on Topamax for a week so I definitely need to give it time to settle in. I’m thinking I’ll make an appointment with the gynecologist to check out hormones as well. I too found it interesting that anticonvulsants are prescribed for migraines. I have seen some studies showing a correlation between those with epilepsy suffering from migraine as well. Additionally it makes sense with the CNS going a little nutty. I will definitely check out the archives
I’m almost sure it would come up in any conversation with consultant but do please make sure they are aware because there are drugs contraindicated with history of epilepsy you could be offered although I cannot name them off the top of my head. Helen
Fluorescent and store lighting are by far the worst triggers for me these days. In fact, any strong lighting is intolerable just now—I cannot even work in my home office, let alone a regular office environment, (So I’m off work obviously). I hope the Topamax turns down the dial on the symptoms for you over time—as everyone else has said, the preventatives do take some time to work.
The anxiety element of it is something you may be more able to address yourself. Mindfulness meditation, and even just steady conscious breathing, may help in the stressful situations. Also, if it helps, you know that your time in the triggering environment is temporary, not permanent; the related discomfort will also not be permanent. You may be able to avoid the triggering contexts or at least know that when you encounter them that whatever symptoms are provoked will not last forever. In one sense, being able to identify triggers is a victory; this alone gives you a great deal of control and is empowering (compared to having no rhyme or reason about the symptoms and their severity).
You will find a lot of valuable information, wisdom, and advice on this site, and I hope some of it will be of use. It’s also the case that everyone is different. I have tried the migraine diet and have found absolutely no benefit to it, though it’s a lifesaver for many. (My own triggers seem to be more environmental and are still quite mysterious to me.) Sleep habits and the ever-elusive stress reduction do seem to help many people. It also seems to be the case that most people who are in treatment for migraine DO indeed improve, maybe not to 100% all the time, but the evidence does show improvement for most. That helps me when I feel anxious or depressed that things will be awful forever or never get better—chances are that if I keep seeking treatment and adjusting it when needed, things will at least get a little better.
I’m impressed you are still drumming. My husband is a musician and I can’t go to his shows any longer, though I hope to once again in the future.
Wishing you well with your treatment and symptoms—you have found a supportive community that lifted me at some very low moments, and I hope it brings you some reassurance as well.
Thank you so much for the kind words and tips. You are so right when you say I need to practice mindfulness. I am really good at doing breathing exercises in the moment, but it is so hard for me to get my thoughts in the right place. I have never been able to meditate because it’s hard to turn my thoughts off, except when I play drums. I need to learn new ways of coping and living in the moment even when the moment isn’t the most preferred
That’s a form of meditation in my book. Do what works. If you get frustrated by traditional meditation, don’t force it. My Naturopath kept pushing it on me and I had to explain to her that having a migraine is meditation, there is nothing else you can really think about other than the pain and other weird sensations. Same with dizziness, you are already completely aware and mindful of your balance - it sucks!
And I don’t mean to say mindfulness isn’t helpful, it was for me, but it was just like 5% or something. I just think with this condition, not to look too deep into it, that’s all. I don’t think its a silver bullet for MAV, although I suppose it could be for some.
Don’t we all! Mantras can be helpful, because then you have words that replace the thoughts. If you have one phrase for inhales and another for exhales there isn’t room for much else. Lots of resources for this online and in books. Just an idea. It takes a bit of discipline but also feels like a relief to have something to attach your mind to when it feels like it’s going in unhelpful directions.
Actually, this has just inspired me to try mantra practice to help me with my out of control eating (brought on by the upset of the chronic migraine and many physical injuries—all a result of being hit by a car 8 months ago).
But the idea isn’t to be perfect—the mind can’t be perfectly governed just by will all the time. But there are techniques that are proven to help and meditative practices are definitely among them.
acupuncture has helped me because you are forced to stay still for 45 min with needles in your body! I then kind of analyze the dizziness instead of fighting it. Also, when I start to feel anxious or sad, I just tell to myself “I am already better, and will be much better soon”, and continue.
I was wondering how you were doing with Topamax for your symptoms and also side effects. I am not sure I am getting the results I need from my current med and am trying to assess possible next options. Hoping you are well.
Hi there. I’ve been in a low dose for a month along with the migraine diet and I’ve been doing great so far. The first week was admittedly rough with lots of anxiety and depression which is part of the adjustment. I let myself be sad and took it easy that week. I take my meds around 8 pm every night so if they make me sleepy I just sleep well through the night. So far I’ve gone 10 days without an attack. Had a 3 day one due to alcohol…learned my lesson. Can’t drink the way I used to now.
So glad to hear you are doing well; long may it last. Glad to know that the side effects weren’t too too bad for you. Still not sure what I will opt to do with my meds. I really would like to be able to do more regular life activities, and eventually work again. That feels very far away now—at home on the couch I am ok, but that’s not quite enough to fill a life!
I’m also doing well on 50mg of topomax, I don’t notice any real major side effects. But I would still advise starting really slow. I started on 5mg just so I could feel the effects first before going up in dose.
Thanks Helen. Yes I walk to and from the gym for 1 hour of cardio plus strengthening work and also to and from yoga class just about every day. Very moderate activity in comparison to what I used to do, but it’s something. I can’t say any of it is particularly enjoyable—I weave around on the sidewalk and battle a headache the whole time. I don’t think that exercise improves my symptoms but sometimes my mood is better afterwards, and it fills up some of the time in a day.
I don’t go out socially because it’s just too uncomfortable; I am gritting my teeth the whole time wanting it to be over. I will need to see a lot of improvement in my symptoms before I can enjoy everyday life. I have had some progress but I’m so far from being healthy and being able to live a normal life. It doesn’t seem like that should be such an ambitious goal. I am really impressed that many people on this site have managed to keep their jobs. I make myself do physical activity but anything involving thinking and bright lights/screens is impossible now—so frustrating because my work was intellectual and creative in nature. In a way I’ve sort of adjusted to living as an invalid, which I don’t like either. I know patience, etc., but I just feel that this quality of life is not acceptable. So I need to make more changes in meds/treatment I think, so I’m not stuck in this non-life indefinitely.
That is really good to know, and I’m very glad to hear that you have had progress on this med. That is great news! I was interested when you mentioned joint pain/tiredness being reduced after starting topiramate—I have so much of that, and I don’t know if it’s still an aftereffect of being hit by a car 9 months ago or if it may have something to do with the Effexor.
Perhaps you are overdoing the exercising rather than underdoing it. I did that a long time and it hinders progress. Sounds to me like you are pushing yourself too hard if you are constantly ramping up symptoms like that, Exercise does increase symptoms but long-term is supposed to improve compensation. That’s a theory. It might keep the rest of you fit which is good thing but … sorry to read you still suffer brain fog type symptoms. Are you on Topamax or an anticonvulsant class drug because they are the ones usually associated with such side effects or maybe you haven’t hit effective drug of Effexor is it? For long enough yet. Helen