I was recently diagnosed with MdDS along with the migraine associated vertigo diagnosis I received almost 2 years ago. I’m having a hard time with this diagnosis, but maybe I’m just in denial. I did a search and read some of the older posts about MdDS, but I’m still wondering people’s thoughts on this. Can I have migraine and also have MdDS, or is it more likely that my migraine is displaying MdDS like symptoms? Maybe it doesn’t really matter, it just feels daunting to me to have one more thing to worry about controlling. (I have also noticed on a different group that my neurologist has recently dx 3-4 other people with MdDS and migraine… Hmmm).
My new symptoms started in March after being off meds for 5 months and not being great with my diet (was having coffee daily, eating a lot of papaya without realizing its full of tyramine, and a few other no-nos… So dumb of me, but I did learn a lot in the process). I was doing really well until March. I did go to Disneyworld in late January and picked up the flu while there, so that could have gotten me off track too.
New symptoms:
-a lifty feeling when I walk (It almost feels like when you hit turbulence on a plane or maybe that trampoline floor feeling people talk about). These are brief and don’t happen 24/7.
-When I walk up the stairs my legs feel really heavy and I have a pulling sensation in my body. Again this isn’t 24/7. It usually happens later in the day when I’m a little more tired.
-After I drive in the car or go for a boat ride I feel a little more off balance and rocky, but it clears up a bit after a few minutes. I have zero symptoms in the car or while on a boat.
-Vacuuming or sweeping my floor would start to make the floors feel like they were going up and down, but that has improved a lot.
-On and off ear fullness- more of wet ear feel in my right ear
I have cleaned up my diet back to following HYH and started nortriptyline 6 weeks ago. I’m up to 30mg. These symptoms have stopped:
-I no longer have a ping-pongy feeling in my head
-Screen tolerance has improved a lot
Hi Lisa,
These all sound like VM symptoms… not sure how these Doctors separate VM from MdDS when the symptoms are the same… maybe there’s something I’m missing.
Did your Neuro happen to state any differences that led to this dx?
I am also on Nort and what a Godsend it has been for me! Hope it is for you too
This was my third virtual appt with this neuro. I was giving him an update and mentioned I feel a little heightened symptoms lately after riding a bike or going for a boat ride, but I’m symptom free when I am on a bike, in a car, or on a boat. Then he just said, you have MdDS. So, I believe since I don’t have symptoms when in motion that was why he said I have MdDS. I actually sent him a message yesterday with some questions and now have another appt with him on Monday. My symptoms are not 24/7 either (thank god, i know I’m lucky there) and it seems like with MdDS people are rocking 24/7. I get more of brief moments of rocking, unbalanced feeling.
Thanks for the reply. I’ve read some of your posts What dose of nortriptyline are you on?
And lots of MAVers also Rock 24/7. I always thought MDds folk were 24/7 dizzy/rocking? But I know MAV morphs constantly and can change very easily from episodic to chronic so heaven knows how doctors tell them apart. Be very interested to hear what he says next and the treatment, how different is it?
I have 24/7 rocking and my diagnosis in vestibular migraine. I have read a lot about MdDS, and I think they are pretty similar to migraine. Even treatments/ prevention/ symptom alleviation/ impact on life/ triggers. My neuro told me me they are on the same spectrum, and I think PPPD is another of these multisymptom diagnosis. I would say that whatever treatment you follow for vestibular migraine will probably help your MdDS.
I hear ya. I guess it’s just kind of daunting to have another diagnosis and worry about travel or going on a boat triggering me. But I’ve read it can be triggered by stress and hormones too, so it certainly is very similar to MAV/VM.
I just assumed mine came back and morphed a bit. After my appt on Wednesday (2 days ago) he wanted me to go from 20mg to 30mg of nortriptyline, take a low dose of Lorazepam for a few weeks to see if the lifty, rocking sensation stops, and I’m also doing a steroid burst because that helped me the last time I did one. I’ll let you know what I learn when I meet with him again on Monday.
I have not avoided anything. Sure, I am still rocking but it is already hard to live with this for on top of it being afraid about living life. Just the fear of the trigger is a trigger! Same with food. Although I guess there is more objective information on that. I avoid certain things (chocolate, caffeine, red wine) but not at all the long list included in migraine diets.
well you are on top of it and since it is not chronic, I think you will have better results. Don´t avoid movements. When I avoid moving my head I get dizzier. I tried to do almost everything, that is the vest vestibular therapy
Hi Lisa!
I am on a whopping 75mg of Nort and it has treated me so well. My only issue is that I can’t seem to shed any pounds that I gained while on Ami.
I have read a lot of people with VM feel fine while in a car. I have always better in a car… except when I was chronic and the car would stop; I felt like I was still moving for about 10 minutes and just had to wait it out before getting out.
What a strange disorder this is! How long have you been on Nort?
Just 6 weeks. I just increased to 30mg a few days ago. The amitriptyline took about 6-8 weeks to really see a difference, so I’m close to that! I might increase to 40mg soon and then stay there for a bit and see how I do. I had really good relief at 20mg of Ami, and then went to 30mg for 6 months and was doing well.
What dose of nortriptyline are you on?