Anyone have MAV and a SCD? I was hoping for a clear cut diagnosis of MAV but the doctor found hydrops and a CT which showed what appeared to be a Superior Canal Dehiscence but wants to try meds before surgery. He said if I have Migraine the verapamil will help and if it doesnt it is likey a SCD. I joined a SCD support group even though I don’t have a lot of the main symptoms of SCD. The people at the SCD site say that it sounds more like SCD than MAV. That SCD symptoms are also brain fog, tinnitus, sensitivity to light, sound, noise, smells including the hydrops. I was wondering if anyone on this site had multiple diagnosis like me at first and ended up just being MAV. I want to try Verapamil again (quit after 4 days) but the SCD support group tells me not to waste my time and it just sounds like SCE.I don’t know what to think. I really want to believe it is MAV instead. I hope it is although i wouldn’t wish either one on anybody! But I don’t want to have a craniotomy as treatment either. Any opions would greatly help.
Well, nobody has responded to my post yet so I think I will. Started Verapamil for the second time so see if I get any improvement. Doctor says if i do then I can rule of the SCD. The first time I tried the Verapamil I couldn’t get past day 4. Even only 40mg 2x a day was too much for me (another reason why I feel like I have a migraine brain instead of SCD). So now I am starting on 20mg 2x a day and having the same SE I did on 40 but not as bad. Still having trouble sleeping (I don’t why that is happening) but I on only on day 2 and I think my vertigo has already started to subside! Maybe it’s just fluke but I actually feel a little better when I’m not nauseous from the Verapamil. I pray that this works and I’m really just suffering from MAV and not SCD. I would rather take meds over a craniotomy any day! The only scary thing is the positive VEMP test along with the CT findings. You can see it plain as day. Very small but you can see it. If anyone has any input on my situation I was greatly appreciate anyone’s feedback.
I don’t have direct experience of this personally, but I would definitely try the migraine prophylatic route first, as it’s much less risky than having surgery. Surgery should really only be the last resort, and only if you feel confident in your diagnosis and feel certain you will benefit from it, whereas you clearly have some doubts right now.
I also think it’s very hard to decide on a definitive diagnosis, as people often have symptoms that can be true of more than one condition. I have (or had) sound-induced vertigo and nystagmus and I also (still have) pulsatile oscillopsia, so was suspected SCD at one point. But mine has turned out to be MAV.
The symptoms of MAV are almost identical to SCD. This is so annoying. Can MAV symptoms go from your typical yucky symptoms to worse or should they be constant? I’m trying to explain to my doctor that I’ve been suffering from typical MAV symptoms for over 4 years but those 2 vertigo attacks in September changed everything which makes me worry it is a SCD. Has anyone ever suffered a vertigo even or something similar that made your symptoms progressvly worse and still only had MAV?
Yes, my MAV symptoms came and went. My first few attacks were quite short-lived, and I didn’t have much true vertigo at all, mainly a feeling of being dizzy like I was really drunk, and I would be completely ok within a week. Then I got hit with a massive attack of vertigo, and then I just didn’t seem to recover properly, as I got a lot of problems feeling like I was constantly moving/feelings of false motion, and the slightest visual thing (e.g. just water moving in a sink) would set off waves of imbalance and nausea like I was travel sick. After that, over the course of about 8 months I had about 5 attacks of really bad vertigo, where I would literally be unable to move off the floor for a few hours. I’d get back to being able to do things within a few days, but then I still had months of the other dizziness/visual problems I described. It only settled down and passed once I was on migraine medication, so I’m guessing my diagnosis of MAV was correct.
I never had a VEMP test done. I had an MRI of the inner ear region and this showed something possible with the bone, but the CT scan seemed to disprove that. As I’ve pretty much made a full recovery, I assume the MAV diagnosis must have been correct.
But I remain nervous about really testing it out and flying (which would put it all under pressure!). Especially as my first bad bouts of vertigo came on after a long haul flight.
But to answer your question, MAV is certainly NOT constant for most people. It comes and goes in severity. Just like any other kind of migraine would. Although with any type of migraine you can get into a chronic state where you are never entirely free of it. For a lot of people medication and lifestyle changes can break this cycle.
wow that sounds just like me!!! I had the same kind of dizziness, feeling hungover, sensitive to meds, light, sound, smells, extremely motion sensitive but no vertigo until Sept. this year. BAM!! 2 horrible episodes and I never felt like I recovered. I joinded the SCD support website and they are all convinced I have SCD due to my symptoms. And unfortunately, my postive VEMP test and CT that clearly show a tiny hole is quite a bit of evidence. But like I said, my doctor still wants to treat with meds and hope for MAV. I’m on day 3 of Verapamil and I swear I got an attack of some vertigo lastnight an hour after I took it. I feel like it makes me dizzy. They keep telling me to give it some time to get into my system but I’m extremely med sensitive so it’s hard, What meds are you currently taking? Do you follow the migraine diet and stay away from triggers?
Oh, and another thing, I am supposed to fly on Wednesday to see my Father who isn’t doing very well and I feel like canceling because I am terrified I’m the pressure change is gonna cause a major problem and I’m already a total white knuckle flyer since birth. I’m sure that won’t help either. My Stepmom passed away 2 a week after my first violent vertigo attack in September and I couldn’t even fly down for her funeral. And now my Dad is a mess and I can’t even get down to comfort and help him. I can’t believe it all happened at once. When it rains, it pours I guess.
So one day I feel great and think the Verapamil is working and the next day I feel awful and the room is moving! Then I took 1/2 a valium which gave me anxiety! What gives, so far this morning I feel pretty good. I’m sure in the next few hours I’ll be dizzy again. Sometimes I feel like these meds make you worse! I’m only taking 20mg 2x a day. I wish I knew for sure whether or not this was MAV or SCD. This is also really ruining my holiday spirit!!! I’m so frustrated!
I had each canal resurfaced, but was never told it could just be Mav and may be helped without surgery…try the drugs as long as you can, the recovery and after effects on the ears is very drastic, take several months and try at least a couple of drug choices to see if it works…you can never reverse the surgery, it usually takes months to make an appointment for surgery, so take the time to try the drugs and diet.
Jaybird
By the way, I have been taking veraPamil, but it has taken 3 weeks to feel better and I take clonazopan as needed for extra stress and anxiety…hopefully this is right mix for me.
So you had SCD and now have MAV? I am terrified of ANY surgery let alone a Craniotomy!!! I’ve been told by the SCDS site that all my symptoms sound like SCD but I don’t hear any sounds in my ear, I don’t have any noise induced vertigo (although I am very sensitive to noise) I don’t have any hearing loss in that ear, I don’t have a feeling of fullness in my ear (just a little pressure change here and there, nothing constant), my vision doesn’t bounce around or tilt (just some occasional blurring), no pulsatile tinnitus (mild tinnitus that goes between both ears), so I’m wondering if my SCDS (that can be seen on the CT as a tiny littlehole) is symptematic yet? All I know is I am going to have to be on the floor with vertigo, hearing my eyeballs move inside me ear, and be a total debilitated mess before I have surgery! How bad were you when you decided to finally have the surgery and how long was your recovery? Are you considerably better? Thanks so much for the input. I really need it right now.
Leslie, I was suffering with 24/7 “dizziness”… Not a spinning vertigo, but an uneasy shaky feeling with a lot of anxiety.
I also had tinnitus that was driving me crazy. I went to Mayo in Florida( from indiana) after local docs had no answers and Mayo said they suspected scd, but didn’t see holes, but very thin walls and I was desperate for help because work and life was getting hard…I did the surgery on one side and went back 2 years later to do other side sense I still was dizzy…this was in June and after 4 months I knew this was not the solution so I went to another local doc that is treating me for MAV and after 3 weeks I have been putting some pretty good days together. I am not sure how this site works, but if you want to email me direct I would be glad to share more or let you know my progress. the healing from the resurfacing takes at least a year and then I still have after effects in each ear.
The symptoms of MAV are almost identical to SCD. This is so annoying. Can MAV symptoms go from your typical yucky symptoms to worse or should they be constant? I’m trying to explain to my doctor that I’ve been suffering from typical MAV symptoms for over 4 years but those 2 vertigo attacks in September changed everything which makes me worry it is a SCD. Has anyone ever suffered a vertigo even or something similar that made your symptoms progressvly worse and still only had MAV?
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Hi Leslie,
A definite yes from me on the vertigo. That is why this dang disease is called Miagraine Associated VERTIGO!! I have had several attacks of severe hours long vertigo over the last 4 years. Knock on wood, I haven’t had one for 10 months. Other than the vertigo my symptoms are very similar to those you and beechleaf mentioned, most definitely visual things. Any kind of movement, especially unexpected, sets me way off for hours. Not that it gives me vertigo, just a terrible feeling of motion sickness. I’m very sensitive to light (snow glare is the worst for me) and smells. I have to hold my breath when I walk by Yankee Candle, ugh!! And that’s if I can even make it to the mall.
All these vertigo disorders have pretty much the same symptoms. If you take your list to an SCD group everyone there will say it’s SCD, ditto for Menires or food intolerance or MAV. Thruth is, it’s extremely difficult to get an accurate diagnosis of this beast. Even doctors can’t agreee. You can take the exact same symptoms to 5 different docs and you can end up with 5 different diseases.
I’m with you as far as surgery. It’s the last thing I want, keep those knives away. Keep up with the meds, maybe something will finally kick in and work for you. I tried verapamil but it gave me terrible constipation so finally gave it up. We dizzy people can be very sensitive to meds. I had to give up nortriptylene after a month because it gave me the wost insomnia ever, only 3-4 hours of sleep a night for a full month. And most people have to give it up because it makes them too sleepy.
Yes! I am so med sensitive i am only on 20mg verapamil moring and night and it actually makes me feel good and gives me energy until around 3-4pm and then I can feel it wearing off. I started getting my little vertigo jolts!!! Then I take my 2nd dose at 7:30 and it is giving me insomnia and extremely restless sleep! I wake up so tired but as soon as I pop the morning one, I barely need to even drink my coffee which I guess is good too! It feels like an amphetamine to me? I guess it’s ok for now. At least it is giving me energy if nothing else! This MAV crap sucks! What is weird though is all my positive tests and the positive CT showing a dehiscence. Well, they are only images, maybe it shows on the CT but isn’t a hole afterall. I’m praying for MAV and not SCD as sick as that sounds. I’d rather take icky meds than have my skull cracked open!