Hi, Iāve just joined this group, and am looking for some opinions/advice. I was recently diagnosed with vestibular migraine which was a shock to me! But when I look back over the last few years, I do have a lot of the symptomsā¦
In August 2019, I started experiencing ear pain (although Iāve been dealing with ear pain sporadically for several years). It was starting to get worse, and I was at the Dr 5 times between August and December. They kept treating it as an ear infection and prescribing antibiotics. My Dr. finally sent an ear swab to the lab, which came back as no infection and he sent me to ENT. They confirmed no infection, did an hearing test which was perfect. On hearing my symptoms, he diagnosed as VM.
My husband has had several health issues since August so Iām thinking that perhaps the stress, insomnia, and anxiety caused my VM symptoms to get worse?
I have had the dizziness, years ago, but lately, itās more of a balance problem (feeling unsteady or like Iām going to fall). Or if I turn my head quickly, I feel like I will get dizzy. Iāve had a few auras over the last few years.
I was working full time until August, when I retired (retirement has not been good so far!!). I worked in a hospital, and a couple of years ago, I was having balance issues while walking down long bright hallways. I also went through a stage when it really bothered me to be in the bright, noisy conference rooms or cafeteria. I did have a bad fall in a hallway in the hospital a year ago and it was probably because I was a little unsteady. I also wonder if that makes my symptoms worse because now Iām always so afraid of falling!
Bright lights, and noise, definitely both me, and I still find it hard to go into a mall (I have to be having a good day, in order to be able to do that!). And for the last couple of years, I can not go down an escalator. I always have to take an elevator. When I get close to stepping onto an escalator, I feel unsteady like Iām going to fall and I canāt do it.
I know that exercise is supposed to help, but I canāt go for walks, because of the unsteady feeling when walking on uneven sidewalks. And I tried the gym, but because the mat of the treadmill is moving, that also bothers me.
The ENT specialist recommended magnesium, Q10 and B complex. My family dr had prescribed Serc when I was experiencing the balance problems when they thought it was an ear infection. Iāve been taking magnesium every day, which is helping. I take Serc if Iām having a bad day. I still have days though (like today) when I donāt feel ārightā in the head (canāt really focus on things, or turn my head too quickly). The ENT also recommended Amitriptyline, but when I read about it, there are so many possible side effects that Iām avoiding it for now. Iām really sensitive to medicine (usually get the ārareā side effects) so I would only take it if it could be on an āas neededā basis.
I was doing a food diary but didnāt find anything that was an obvious cause. Iām having a bad week this week, and donāt know why. I think thatās one of the most frustrating parts of this. I want to be able to pinpoint the triggers. Iāve had a couple of coffees this week, but that doesnāt usually bother me, and our weather has been fine, so itās not weather related. I played cards for a couple of hours on the weekend, and donāt know whether that might be a trigger?
So I guess my questions are if these symptoms sound like those that you have experienced (I guess Iām not totally convinced of the diagnosis), and Iām wondering if any of you are taking Serc and if it helps. I also wonder if many of you take Amitriptyline and if it helps with balance?
Thanks for any input!
Hi Linda, and welcome to the forum! Sorry you are suffering too.
It comes down to a quality of life balance. I could not even read this website without it at one point. Exhaust all the mainstream non-medical solutions first.
Dizziness, nausea, motion & screen intolerance, yes, balance & tinnitus, no. Thatās likely to vary with person though. It definitely improved things immensely for me and one of my consultants called it āa game changerā.
Thatās good to know. Thank you for your input.
Since this diagnosis is so new to me, Iāve been trying to do my research on it, but advice from real people who are suffering with it is much appreciated!!
Make sure you look through the welcome post with its links into the Wiki which contains lots and lots of links. Plenty there! And use the search function.
HI,
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Thanks,
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Hi, and welcome. Iām no medic but a couple of paragraphs in and Iām thinking sheās one of us, another MAVer. I could have written most of your history relating to myself. From that I wouldnāt question your diagnosis one bit. Welcome to the Club.
There are no medics on here so we cannot diagnose but youāve already had that. In answer to your specific questions. As a fellow sufferer and widely read amateur Iād say Amitriptyline is an excellent choice. Very long established for MAV and produces excellent results. Many of here use it. If you use the Search facility on here you can check out success stories using Ami as we affectionately call it. Serc, you can search too but itās not a usual choice for MAV. Itās specifically used for Menieres by my understanding. A word of advice. If you worry about the listed side effects you will end up not treating your condition with medication at all. All the drugs have correspondingly lengthy lists of those. Besides MAVers are supersensitive, to environmental triggers, foods, and meds. Goes with the terrain. Starting meds best to Go low and slow. Some people might advise you to go āthe natural routeā, diet, lifestyle changes etc rather than drugs. Noticing you are, er, might I say, my āvintageā could well be some hormonal involvement and MAV with that is a very hard nut to crack. Stopping eating bananas just aināt gonna do it. Believe me. Untreated MAV tends to just get worse.
Iād guarantee MAV is one of the most frustrating conditions on the planet. With triggers you have to bear in mind that they are (a) cumulative and (b) influenced by current tolerance sensitivity levels so virtually unable to fully comprehend. When it comes to ācoffeeā. Iāād say many doctors say to gain control over MAV or migraine we need to quit caffeine completely. First thing to go if you go down the ānatural routeā. Great to keep a food diary, Certainly worth trying a migraine diet. Again you can search the forum on this. The six āCās is a UK favourite choice for diet but there are others, the āHeal Your Headacheā book, (have to buy that one) and btw the āheadacheā component isnāt necessary, or the āJohn Hopkinsā US oneās another. If you go to the Wiki Welcome Section you will find the Migraine Survival Guide which particularly with your nursing background youāll appreciate. Written in 2014 itās advice straight from the mouths of several imminent specialists in Q&A format recorded for posterity by a previous forum leader.
As usual, Helen caught all the highlights. Welcome Linda @LindaK. You are definitely one of us. MAV sucks but it gets better.
Iāve experienced MAV for a long time. I have tried and failed many meds. Still, I recommend you try them. Itās worth it. It may take a while to get there but you will improve. It gets easier. MAV is not curable but it is livable. With time, patience, fortitude and trail and error, you will find a way to thrive. Guaranteed.
Hi,
Itās really interesting (comforting in a way) to hear you say that based on my symptoms, you would definitely agree that I have MAV.
yes, I kept a food diary for a few weeks, and didnāt notice any triggers from food or caffeine. As you know, thatās still a work in progress, I guess.
And yes, I also thought about looking into bloodwork for my hormones. That could definitely play a role in all of this.
Thanks for all the info
I have another question that I meant to ask peopleā¦ is it usually better in the afternoon? Iāve noticed for several months (even before I knew what this was) that I might feel crappy in the morning, but usually, after lunch, I would start to feel betterā¦ I was starting to think that I was diabetic and that it was because I had eaten lunch, but Iām not diabetic, so Iām starting to wonder if thatās common with this condition?
Well good luck with the āblood workā for hormones. Iāve never found anybody at all interested in finding the cause and attempting to sort it. With young women treatments have bern evolving which involve taking certain drugs at certain times of the cycle but then again thatās just aimed at MAV symptom control. Age may be a crucial factor bearing in mind the upper recommended limit of 5 years post menopause for hormone replacement in the UK. A possibility.
Iāve always been worse first thing, from waking onwards and virtually all my full on attacks have started as I awake in the morning. In fact for years it felt like I needed to relearn how to balance on two legs every time I got out of bed. As if Iād forgotten in my sleep. Very obvious pattern of mine, and always better evenings. Never thought about it before as not so obvious but yes, guess it tends to improve, if itās going to on any particular day, in the afternoon. Interestingly if you search the forum for ābetter in the afternoonā youāll find 50+ posts that will agree with you. Just checked it out.
@LindaK Hello and welcome from me - still fairly new here after finding this lifesaving site last Autumn. There are plenty of helpful resources to read through and very supportive people.
I was diagnosed with MAV and PPPD 15 months ago following a bad bout of vestibular neuritis. All tests (MRI, hearing etc.) have come back normal. However, Iām 49 and believe that fluctuating hormones are definitely aggravating my situation. Recent blood tests confirmed my hormone levels were changing and these are going to be rerun in 3 months time to see if this still remains true.
Food doesnāt appear to be a major trigger for me either although Iām a lot more careful about what I eat i.e. reducing salt, cutting down on caffeine, avoiding MSG etc. I also need to work on keeping stress levels down and getting more sleep which is difficult when you suffer insomnia. Iāve been on Amitriptyline for several months at 10mg which I take at night. I seem to be able to tolerate that well and it does help with sleeping. I also go out and about as much as I can, partly as a distraction from my 24/7 symptoms but also to push boundaries - so I go to crowded shopping centres and try to last as long as I sensibly can. Riding around on public transport also brings me relief as my symptoms temporarily abate once Iām in motion! Recently, Iāve started acupuncture for the head pressure which I believe is helping a little. I have several sessions still to go so Iāve got fingers crossed for more improvement!
Personally, I find things tend to change daily. One morning I can feel at baseline with symptoms and then they increase throughout the day or vice-versa. Some days are decent, others are downright dreadful and I have to ride it out as best I can. Keeping hydrated and trying to eat regular meals are a work in progress but I do notice some improvement after eating. I just wish it lasted!
This condition is certainly a tricky one to negotiate but I know that if Iām having a really ādownā day, then I can pitch up here and be surrounded by knowledge and support. The Migraine Survival Guide is an excellent read and it put my mind to rest on some of the worst case scenarios that my anxious brain had managed to dream up!
HI Allyson,
thanks so much for your input.
Yes, Iām trying to cut down on caffeine, etc, as well. I think that I will start my daily diary again, tracking my food and sleep. As you say, it varies from day to day. Last week was a good week, and this week has not been good. I do find that I usually feel better in the afternoon, especially when I start out having a bad day. And I have found that I sometimes feel better when I get less sleep. But as someone who also suffers from insomnia, and a lot of stress right now with my husbandās health (and mine), itās not always easy to get a good nightās sleep. And Iām working part time (3 days a week) so that is tiring as well. Iām seeing my family dr later today, so I think I will ask him for the prescription for the amitriptyline that ENT had recommended. It might also help with the sleep, and the anxiety, which would be a good thing!
I did print off the Migraine Survival Guide and will read it this weekend.
thanks,
Linda
Youāre very welcome Linda and I hope your appointment goes well.
I forgot to mention that I also had four major life stressors at around the time I had vestibular neuritis. Add in a bit of peri-menopause and I suppose I shouldnāt really be surprised at where I find myself. I now look at it in hindsight as a warning that I needed to start looking after myself betterā¦so thatās what Iām attempting to do, bit by bit.
Thatās interesting. My family Dr suggested that I try one pill at night for a week and see if it makes any difference. Thatās what I will do, along with tracking everything to try and find what my triggers are.
