Hi there. I’ve been dealing with vestibular migraines for about twenty years. They worsened about four years ago and it is one of the reasons why I quit working.
I take pizotifen which helps. So they are less severe, but still happen. This med has also caused me to gain weight. So I am bigger than I have ever been.
Changing seasons seems to be an issue; I only recently identified this. In the month before Winter and the month before Summer, I seem to have many more episodes. I am also triggered if I’m not hydrated enough, stressed, tired or exposed to too much motion (e.g. railway stations are a hazard). The worst part for me is the loss of balance and I sometimes worry if it will be an issue as I get older. I’ve had three falls already: once downstairs and twice flat on my face. To some degree I’m living around known patterns. I have great friends who will help me out if I’m too wobbly.
There is an upside. For no particular reason, I’ve been okay for about eight weeks. It feels like a minor miracle when the ground doesn’t move about so much.
I’ve been part of various facebook groups and this has been somewhat helpful. I decided that I would like a forum better. While I’m okay right now, I don’t know if it will last. I would also like to be able to share my experiences in case it is helpful to anyone out there. I have a great neurologist, but he’s not with me every day. The support of fellow sufferers can be so valuable.
Hello and welcome. That is great to hear that you have had a run of good weeks. Enjoy! And try as best you can not to worry about if or when the symptoms will return.
I’ve had vestibular migraines since the mid-1990s, though I didn’t know that’s what they were for more than 20 years. I was just diagnosed last July, by which time the condition had become chronic and extreme, unfortunately. Everyone’s story is different; I lived with chronic migraine for 2 1/2 years until I was hit by a car 10 months ago and the symptoms increased exponentially. So now I am off work and living a carefully circumscribed life that is not at all satisfying. I’m trying to be patient but at the same time am committed to pursuing treatment options doggedly, since I feel that 100% symptom control is not an unreasonable expectation. That said, I have cried more over the last 10 months than in the rest of my life combined. It’s so hard to have a condition that takes away so many of the things around which one bases one’s identity (work, appearance, social life, energy level, activity level). But I try to believe that I am still the same person inside and that the people who love me the most still value and accept me.
I’m so sorry that you are experiencing this terrible condition. There is a lot of information and many knowledgeable and compassionate folks on this forum. Everyone’s experience is different but some people’s symptom patterns chime closely and this can be helpful when considering treatment options and discussing specifics. Some people on this forum are truly expert students of this condition and I doubt there is any credible information or theory that you could not find on here!
It’s great to hear that you have a good neurologist—this condition is so isolating and so specific to each person that one tends to feel really alone. Having trusted allies makes a big difference.
Hi. Sorry you are suffering, it is a horried condition. I have had this for years as well and only diagnosed in March 2017. I had to give up work as well,although I didn’t want to. I do have a couple of other conditions as well. I am on a low dose of beta blocker but think magnesium and b2 helps a little. I am glad you have a good neurologist. My doctor referred me to one but he returned the appointment saying he didn’t do botox!They are hopeless. Do you get the spinning vertigo? Feel better soon.R.
Thanks, Isengara. I’m sorry that you’re suffering so much. I agree that this illness is very isolating. The lovely thing about the neurologist is that he knows what I’m talking about. Explaining it to others is sometimes hard work.
Hi oak. I don’t get typical spinning vertigo, but more like a vertical spin - like scrolling down on the computer screen. Sometimes everything seems to move about. If I have a bad episode, it can be hard to see well. My phone is set to the largest possible view so that I have some hope of being able to get help. A good friend is on the top of my contacts list so that I have the best chance of finding and phoning him.
I forgot to say in my intro that there may be a job coming up for me. It is somewhere where I have been volunteering, so they know there will be bad days. My last employers were not quite so understanding. I should know more this week… I didn’t think I would be open to it, but I think it’s a safe option and only part time. It does depend on funding, so we’ll see.
I have heard horrible stories about neurologists. I was lucky enough to have one that I’ve been seeing for a long time. I’m sorry your experience has not been so good. Wishing good outcomes for you. We deserve to be well.
Agreed! I have found this forum helpful in adding to the vocabulary I have available in describing some of the sensations of vestibular symptoms in particular.
Hello Tash. Yes, the pizotifen seems to work well. I still have random attacks, but fewer as time goes on. I have put on weight, which is the only downside.
I see Dr Symington in Heidelberg. I started out with him in 1985 when I had something else. He’s very knowledgeable and compassionate. Very good diagnostician. He’s in the phone book.
Hi Tash. He is a neurologist. I’m not sure about specialisations within that. I think part of his strength is that he’s so good at asking questions and listening properly. He’s been a neurologist a long time so he’s pretty much seen everything. I know that he has treated others who have MAV.
As for you making a mess of things. I wouldn’t be too hard on yourself. I was lucky that I already had my neurologist whom I trust.
