Well saw the on call ENT and founder of the clinic. I thought I was having bppv, now not today he said. He referred me back to my ENT because he is treating me and said it would be better for him to keep treating me and see what's going on now. So that was a waste of time.
I am so tired of this dizzy crap. I told my husband last night if they said we can take your dizziness away by chopping off your finger I would say do it. No one seems to know what this is and how to fix it. I've had this for 13 months and its rediculous. I know my anxiety is not helping but how can someone have dizziness most of the time and then have the sensations change and not be anxious. If it wasn't changing the sensations I mean them maybe I would be so worried that it's probably something worse then they think it is. I don't know what else to do, except see my regular ENT next week and hope for the best.
I don't want to take these meds but I may have to. I don't know why I can't believe this is my inner ear, I'm mean for goodness sake every time I move I feel like I'm dropping, if I Bend I feel it like I'm falling, after bending and standing up I feel like the room is swaying, the shower I feel like I'm bobbing, sitting I feel like I'm sitting on a ballon and going up and down. See what I mean every sensation is different every day. How can this be MAV? I don't know, hut I'm fed up with it
Im sorry to hear of youre experiences
Can no one tell you what it is?
Have you had tests?
Which ones?
What do you do with regards to work
And daily activities?
I suffer terribly with anxiety
And my sudden recent veftigo episodes
Are left as
Caused by anxiety
Though When i had my first attack
I was out walking my dog calmly
Which is even more alarming i think
Had mri and showed nothing
Which is great but also a worry
Too
So stay calm above all
Else is my first piece of advice
Then get second opinion
Let me know what happens please
Good luck
Liz
Xxx
What meds did he give you?
Nortriptyline 10mgs, I don't want to take it, I took Amitripyline which is the same family as nort and had bad reaction to Amitriotyline so I am afraid to take it
Hi patty it sems like you are describing my case
I have the same thing and every day is diffrent. I have this crap for 7 month now. I have done all the blood tests and the scans you can imagine. Everything in normal range .even the medicines didnt help that much. And the most worse part to have kids and you have to look after them
I always feel i am walking on sand and the ground is woobly .I have to lean on the wall or whatever while walking.
Hi Liz
I've been told it's migraine associated vertigo and slight mal de debarkmont syndrome (mdds). I had an mri 6 years ago when I had dizziness from bppv and April this year had a head cut and it was clear, have done all hearing test and they were perfect, had VNG test about 5 months ago also and got thru the test until they put the air in the first ear on the right and the spinning falling feeling hot bad and they stopped the test. That's when the ENT said it was MAV. It's pretty much constant I was having days of nothing then the past weeks it back bad. Of course my health anxiety and worry is not helping, but went I feel the smallest twinge of it then the anxiety sets in.
I'm sorry your having dizziness. My ENT says anxiety will make it worse and anxiety can cause it. I hope you feel better and thanks for listening.
Hi
I'm sorry your going this to. I can't imagine having kids with this, my kids are grown.
So you have all the same symptoms of leaning, falling feelings when standing or bending or walking, rocking feeling, bobbing up and down feeling, being pushed when walking, headaches, neck aches, nausea? I have all this. Do you? Do you have different sensations on a daily basis? What meds have you tried? Are you on meds now?
This is the worst disorder and with so many people having that they can't figure it out. Makes no sense to me. I'm so angry about it, I'm tired of it
You should look closely at PPPD. Seems that I remember that you are in Florida. If I were you I would venture a trip to Jacksonville to the Mayo Clinic. Mayo has a guy, he is in Minnesota, that is leading the field on the effects of long term issues associated with perceptual dizziness caused by anxiety. I'm sure that research/data is being shared with those in practice in Jacksonville. See if the symptoms of PPPD do not fit your case.
Just my thoughts
There are other migraine preventative besides the tricyclic antidepressants. But if you won't take any of them, will they at least give you some low dose klonopin? It is a vestibular suppressant, anti anxiety, and can even be used to treat migraine. Does are so afraid of addiction, but low doses, on an as needed basis don't commonly cause dependence and addiction. I have taken it for years, and in the throes of dizziness, it's the only thing that helps. My Neuro has no problem giving it to me. It is also commonly used in menieres disease.
Hi Terry
Thank you for the info. I read a small piece on pppd and wow sounds like me. I guess having the initial attack and worrying about it so much, and not getting help for months could have definitely helped to turn this into pppd. For all I know the initial dizziness could have gotten a lot better but my anxiety kept it going and now moving around is a fear fir me.
I can't believe you remember where I live, I can't remember what I did yesterday.
Thanks for the info. I will check into it. I do take Xanax when it gets bad. Are you taking other meds? I'm sorry but I can't remember what your diagnoses is.
Nortriptyline is better tolerated than Amitrptyline. Do you suffer from migraines or is this for anxiety?
MAV is my diagnosis. I was put on propranolol, but cannot take the dose they want me to... I take only 30mg. It helped, but not totally. One of my triggers is hormones - I've been using bio identical progesterone for 3 yrs, and have quit it, and have seen improvement. Weather is also a trigger, late winter, early spring not good. I am great now. No real dizziness since May. I do think the propranolol has helped, but I need the klonopin when the dizziness /vertigo breaks through. I also didn't believe it could be MAV, but I finally accepted that since the meds, diet have helped, it probably is MAV. It is merely migraine affecting the cerebellum or inner ear. Sometimes there are trigger points in the back of neck that can be injected with botox.
As I understand PPPD, that is exactly what happens. After months of dealing with symptoms the brain becomes fixated on the symptoms and even normal everyday sensations become exaggerated by the condition. Then when you have VN symptoms they are even more exaggerated with the anxiety component. Anxiety is a powerful force and we sometimes experience it even when we feel that it is not there.. I have been recovering for almost 30 months and cannot get the final 5% or so resolved. I am sold that it is PPPD and just recently began a new SSRI. I seem to be able to tell a difference already. While an SSRI will not cure the residual of the damage to my vestibular nerve, it helps to relieve the minds focus on the sensations thereby allowing the rest of the body to heal.
I remember you saying that you went to a university for testing which I assume was University of Florida. There are just so few in the medical community that understand what we are dealing with. Also, there are other drugs to help with MAV that have less side effects that the anti-depressants. Amtriptylene and Nortriptyline, as I'm sure that you know, are second-generation tricyclic antidepressants. They are just used in lower dosage to treat migranes. According to what I have read an SSRI is the anti-depressant of choice for effectively treating PPPD. Beat blockers, atenolol and propranolol, may be a better choice drug for you if you do in fact have MAV. My money is on PPPD.
ENT says MAV and I do have anxiety disorder. I've read nortriptyline helps with both. I'm now wondering if it's actually pppd.
It very much sounds like it could be PPPD. Maybe bring it up to your doctor or go to the Mayo clinic as Terry suggested as you may very well be closer to finding your true diagnosis.
Yes patty I have all the symptoms you have mentioned add on all of these the shortness of breath. I can not go out ony own .i am 34 and acting like 70 ...even in the shower which is the worst part when i close my eyes.i know its not easy and awful feeling .I use to take betaserc 16 and tibonina .tibonina gives me bad side effects so i stopped taking it.I continued with beta serc for a month until it gave me headche then i stopped it. I am now not taking any medicines .the betaserc gave me just 50% recovery .I also have panick attacks everyday espcially in the morning which is really really bad .
I know what you mean about the shower, I used to have an anxiety attack just thinking about taking a shower, it was so hard, especially shaving my legs, when I would bend over and stand back up that when the bobbing and feeling like the shower was moving would hit me. Washing my hair is bad to. I have morning anxiety as well, I think mostly because Im anticipating what the day is going to bring. I have shortness of breath also, comes out of nowhere, but I'm learning to just relax and slowly breath thru it, otherwise I panic and really can't breath. To bad i can't relax thru all of it.
Its hard to try meds because of the side effects, at least for me because they scare me and I just keep thinking of all the bad things that can happen.
I hope you feel better and we can all find some relief
Its great your feeling better. I went thru peri menopaus in 2008-20011 and looking back in all the note I kept, I found alot of references to the same type of dizziness I'm having, the rocking/swaying and at that time ws diagnosed with BPPV and treated and it went away after 3 years according to my notes. It was an awful time during all that, I honestly didn't think I would make it thru it. Then it calmed for 4 years and wierd thing is I'm 4 yrs post menopausal and it all is back. I wonder if hormones has anything to do with it.
Hi Patty
Thanks for reply
What is a vng test?
Wonder why my consultant hadnt done that for me?
Dont know if i should go back and ask ?
What have tou been diagnosed with
Does it stop you going away?
I need a holiday
Dont know whether to go for it
Love liz x