New to VM and Have a Few Questions

Hello,

I was diagnosed with VM this week. I have read through many of the threads here and have found great information. Thank you! Loved the Success Stories thread and the Q&A with the specialists. I still have a few questions. I apologize if they are duplicates to past posters.

  1. A few of the specialist seem to believe you should never take pain killers for chronic migraine. I do not know where I fit it. I used to get a mild hormonal migraine once a month and now I have this. I try to limit OTC pain killers because of MOH, but I still do use them when it is bad. Just wondered what others have done. Have many of you just eliminated pain killers?

  2. My doctor wants me to try the Elimination Diet first (all though I think it is easier to eliminate everything) My question (that I don’t think he answered) is does attempting this diet help with my current episode of symptoms or does it just help prevent the next episode? (or for VM are we just always in an episode?)

  3. My two big triggers are light and multiple sound. I have found the link to the special glasses on this site and I plan to order them. Does anyone have a trick for the sound? I wear earplugs sometimes to deafen sounds, but does not always work.

  4. Curious to know if any of you had some of your sensitivites prior to the “major episode”. For example, for years bright lights and multiple sounds have “annoyed” but did not trigger this resonse. I just wonder if there is a correlation.

Thanks everyone!

Hi swirlgirl
Welcome to the forum! Yes, the info on the board is fastastic but there are always questions - so ask away. I think we’re all aiming to post on the Sucess Story thread - roll on that day!

  1. A lot of the really good VM specialists do emphasise no painkillers - at least until the VM is under control with the meds, then only when absolutely necessary. Before I was diagnosed with VM I was in a spiral of continuous dizziness & daily horrendous headaches & my GP was prescribing Naramig (a triptan). This was prior to finding the Forum & not knowing anything about ‘rebound’ headaches. Anyway, I did stop all pain killers - took about 2 weeks to get through the pain - not easy but worth it as the headaches calmed down to 5 or 6 a month and not as excruciating.

  2. If you have chronic VM (which most forum members do) the brain is always in an episode - the diet & meds (if necessary) try to keep the brain activity under control. Just following the diet has helped some people - you need to do it for 3-4 months before introducing things back to see if you have a reaction. A lot of us do need the extra help that the meds give though.

  3. Yes - light & sound are two big triggers for me & always were when I used to get monthly migraine headaches. Knew when one was coming on - lights seemed brighter, sounds too loud, etc. I haven’t tried the special glasses but know they have helped some. I have the coloured ‘pc screen covers’ but they didn’t help me. Also have an aversion to smells - in fact all my sensory symptoms are ‘enhanced’! The only way I found to deaden the sound a bit was with ‘noise cancelling’ headphones’ & playing soft music on my ipod which I could tolerate.

Now my headaches are under control with Dothep & am trialling Topamax hoping it will help with the visual vertigo caused by fluoro lighting, pc screens, tv panning, flashing lights, etc plus car/bus/train travel which induces motion sickness & dizziness.

Barb

Thanks for asking these questions. I’ve only been here a couple of months and am eager to find out what others are saying as well.

  1. I have infrequent headaches (just most of the other symptoms of MAV) so I had been able to control the pain with Excedrine Migraine. However, the last headache sent me to the ER and I’ve since been prescribed a triptan. Dr. Buchholz considers both these “quick fix” drugs that can cause rebound and recommends taking no more than 2 per month. I think one of the other specialists says only 5 total per year. I’m trying to control the headache with the diet, but if I get another one, depending on the pain level I might try the Excedrine once and hope it doesn’t trigger more.

  2. I agree with Barb. I think our triggers are always just ABOVE our threshold, and then additional triggers send our symptoms through the roof. I have felt a little more clear headed since starting the diet but not nearly “normal” yet.

  3. Sound sensitivity is a biggy for me. Mine fluctuates, but when it’s really bad I use regular earplugs, sometimes just setting them outside the ear canal to deaden the shock. I tried low, soothing music a couple of days ago, and that seemed to help, too. But a sudden pop, such as opening a soda can or dropping a utensil on the countertop is like sending an electrical current through my body.

  4. I’ve never been able to look down while riding, as in reading a book, and have always had trouble riding in the back seat if I don’t have a clear view of the road ahead. As Barb said, visual triggers make me dizzy and seems I’ve always had to be careful of movement. I remember going in a 360 theater years before this officially started, and I couldn’t look at the screen and had to hold on to the railing in front of me to keep from falling. I was nauseated the remainder of the afternoon.

Thank you both for your replies!

I am trying the diet, still learning the in’s and out’s. I went to a restaurant tonight for the first time in 7 weeks. I was “that” person asking for everything plain, etc. The waitress didn’t my mind. The background music was a bit much for me! I do not know why restaurants need background music–I mean don’t we go there to converse with our dinner partners?

Elswyth-it is funny that you mentioned the 360 theater. That is one of the first times I remember getting that sense of motion sickness. I was in my twenties at the time. I can’t remember which came first–that or a trip to San Francisco was the other time I “first” had motion sickness. After the long flight (I’m on the East Coast, SF is on the West) my frends immediately drove me to Muir Woods via windy, hilly roads.

Thanks again! I am trying to take this all in.

— Begin quote from “swirlgirl”

I am trying the diet, still learning the in’s and out’s. I went to a restaurant tonight for the first time in 7 weeks. I was “that” person asking for everything plain, etc. The waitress didn’t my mind. The background music was a bit much for me! I do not know why restaurants need background music–I mean don’t we go there to converse with our dinner partners?

— End quote

The background music baffles me too. It’s not a club, it’s a restaurant - people go there to talk, not dance :roll: . I was in a really noisy restaurant the other night. To make matters worse they had tiled floors, so terrible acoustics, and those big shared tables (with strangers) that are all the rage. And we had to sit on high stools rather than chairs. I spent most of the meal gripping the table. What an unnecessary assault on the senses!

I agree - we seem to always be in an episode but the triggers just push it past threshholds at times. Medications and diet do keep the threshholds down to manageable levels. Hopefully you will find the combination that works for you. The best thing I read so far was in the neurology section indicating that if you find a medication that reduces symptoms at least 50%, stay with it and work with it. For light and motion, I wear sunglasses when my threshold is surpassed. I have found that using a type of white noise works when I can’t get a quiet environment. I use a fan at home and on trips, and sometimes in the office where others talk loudly and play music and phones are ringing. I can adjust to it and its steady sound where I cannot adjust to the changes in noises from others. One night in a restaurant with flashing overhead lights, I asked them to turn the lights off while I was there and they did. I would not have gone in if I had known they had them, but they were the kind that only turned on to certain songs played. I was already eating when they began to blink and shimmer in rhythm to the music and it was too much. Thankfully, the staff understood and I did not have to explain. They probably thought I had a seizure disorder and they would bear some liability. Who is to say it is not very similar? Hang in there and don’t be afraid to ask for what you need. You are on a journey with no known end, so make it a good one.