Both dizziness and headache 24/7

I’m new to this forum. My neurologist thinks I might have MAV. I have a rocking sensation (like I’m on a boat) and headache 24/7. The dizziness started three years ago, the headache about a year later. The headache/migraine can be really bad, or it can be not so bad, but like the dizziness, it’s always there. I feel worse if I do too much, but often I get worse for no apparent reason. I have read on this forum that some of you have the same kind of dizziness as me, but does anyone of you also have headache 24/7?

HI Anette
Wellcome to the forum sorry to heae you are having such a hard time i can relate to the dizzyness its doing my head in at the moment i get tention like headaches but thats it anyway im from England in the UK And this is a us sight but it is good and i understand more now than i ever did so hang in there
best wishes Janet

Hi Parker,

I have the rocking motion sensation and most of it is felt inside my head. There is a Throbbing like sensation that i guess creates the rocking feeling. I mostly have the Tightness and or Pressure inside my head but not pain as much. The last year or so it appears that i get headaches easier…for example if i am having a very stressful day or i miss a meal. I don’t think of them as Migraines…just a run of the mill headache that is painful.

How did your condition begin? Did you experience Vertigo first and then did the rocking motion come later? That is what happened with me.

Sure hope you find the right medication soon!

Joe

Hi Joe
I got the vertigo first 3years ago i thought i was having a strok as my speach went iv only noticed the rocking over the last month since my last hospital appointment and my dizziness is worse than ever the headache is like iv been out in a realy cold wind is this migrane i just dont know do i have mav or md they cant make up thier mind im at a loss and realy fed up i had to give up my job because of this but i have to keep batteling on and not give up just wish there was a cure for us all sorry im having a mone :frowning: have had a few bad days i live in the UK and all i take is serc
anyway take care
janet

Hi Parker!
Nice to hear from someone from Europe. I’m from Norway, so it’s not that far away. I was wondering, do you generally get worse in the winter? I do.

Hi Anette
I have to say it depends on the weather realy i was in Scotland for a week and it was cold and windy but i have to say i was fine i didnt have a problem now that im back home in England i feel awfull it must be the good air in Scotland that agreas with me as its where i am origonaly from may be i should move :lol:
Best wishes
Janet

Hello Annette,

I too used to experience the 24/7 dizzyness, and daily headaches, I can’t say that my headaches were 24 hours becasue they came and went through out the day. 5 minutes hear, a half hour there, several hours or the whole day off and on.

When I started taking the meds for MAV, my headaches did turn 24/7. Kind of odd isn’t it. It fixed the dizzies and balance problems though so I stayed with the med as long as that was the only side effect. We eventually found a second med that took care of the 24/7 headache.

Regarding winter, I too found that my symptoms all got worse during that time of the year. They also almost went away completely every summer.

Hey Brian can you tell me what meds you’re on? I tried diltiazem for dizziness, which made me more dizzy when driving and lying down at night and am going to start on nortriptyline in a couple of weeks. Thanks,

Lisa D

— Begin quote from “Lisa D”

Hey Brian can you tell me what meds you’re on? I tried diltiazem for dizziness, which made me more dizzy when driving and lying down at night and am going to start on nortriptyline in a couple of weeks. Thanks,

Lisa D

— End quote

Lisa,

Depakote is the med that I take for the dizzy part of MAV, Klonopin for the 24/7 headache part of my MAV. I did try nortriptyline for a few weeks several months ago for something unrelated, and it made things so much worse for me. I can’t say if it was interfering with the Depekote or simply making things worse.

The thing to remember is that everyone is different. If you go the med route, what works for one person may cause another to feel worse. Also the side effects that you may experience usually become less, often tollerable if you can tolerate them until that time comes.

Also, doctors vary along what they think will work as migraine preventative meds. Adam, the admin to this site can give you a long list of meds that various doctors use for this porpuse. My doctor only subscribes to four of them, of which I have tried three.

I wish you the best of luck in finding something that works for you.

Brian B