My head is so BADDDDD spaced out and constant dizzy

Ears, nose and throat
1

I apologize that this will be a bit long

I have a hx of migraines with aura since age of 18 (now 58)  and have had bouts of feeling a it dizzy periodically over the years but just little moments here and there.

Also have had 3 full blown BPPV attacks that led me to ER in my past

so...I was on zoloft for anxiety 15 years and then out of the blue it stopped working in 2012..tried increasing dose etc...nothing worked..in the meantime I was given benzodiazpine to counter the anxiety

fast forward to today..In the past years I tried to come off the benzo and failed..in 2015 stopped the zoloft because it simply was not working..I had been having some dizziness but nothing like it is now. Since 2015 I have seen 2 ENT's and neurologist who did MRI and 48hr EEG...thats when he (the neuro) gave me dx of MAV

offered Effexor or AMI..I refused since I had just come off zoloft and did not want to take psychotropic drugs any longer.

I must add that I have again been tapering off valium very slowly which brings its own set of torture

I purchased the book "Heal Your Headache" and have tried the diet but am not good at sticking to it and it doesn't seem to change anything anyways

I am now constantly Dizzy/off balanced/ swaying/ floaty boaty/ spaced out head feels like its infected  never stops now. Nothing I do helps. I went to ER in summer of 2016 because I was certain I had a brain tumor or infection.  They did another MRI of brain and neck and found herniated discs in neck / brain was "fine" ...yeah well tell that to my brain

I am so scared now...I can not work (haven't worked in years)  barely can do anything...simplest tasks make me feel as if I am going to pass out or die.

How can someone have this every single day , all day long?  if its migraine?

I am looking for support and encouragment..if not for my faith (STRONG) in God I would have ended this misery a year ago

I have appt with neuro- otologist in March..I want him to run every single test know to make sure I do  not have something going on in ears..I read that the neuroma ?  can not be seen without MRI w/ contrast?

My MRI's have been without contrast because I had allergic reation years aog to it.

does anyone know anything about that?

sorry for being so long winded but I spend all day on couch or on bed...that has become my entire life. I have great hubby/ grown adult kids/ grandchildren...blessed beyond yet I sit waiting for the day to get over so I can try to sleep and get away from my head symptoms

God bless any of you who are struggling with this...would not want my worst enemy to have this

2

I have no idea how you physically deal with this. My first vertigo attck started last week and its frightening indeed. I can give no advice, but a determined specialist must somehow be found I think! 

 

3

Hi! So I've been having the exact same symptoms as you've been having the past almost 6 months now. Everyday I have a severe brain fog, dizziness. Uneasiness, imbalance, headache. Eyeache. Eye strain. The world doesn't "look right" to me, as if everything is obscured. I have horrible derealization and feel like I'm not here and just floating on a cloud and always walking in a dream like state. The world doesn't look like reality anymore, everything just looks off and odd. My ears are full constantly and always ring. I have like a dark blanket in my head clouding all my thoughts. I can no longer drive or even go outside because everything looks so sickening and nauseating because it looks so odd.

It's horrible! I hope you find relief soon!

4

OK, could be vestibular migraine, you can find a great group on facebook. just search for vestibular migraine and you will see the groups. Could also be low magnesium, iron, vitamin D, or B12 giving you a problem so a drug test will tell you that. Might be your neck....do you have forward head posture? The neck could mess us up a lot, a chiropractor and a PT might be able to help you if that is the issue. Lastly and this one is odd....do you still have wisdom teeth? If you do that might be giving you a problem.

5

OK? I started all this 9/12 ago. Perfectly well until then. Started with visual problems then became head incursions with nausea vomiting and extreme tiredness.Never kne w when they would hit me. And all th etime,  Unsteady, walking on sponges, spaced out,  tingling sensations. Etc. So I had MRI, PET EEG . All normal. ENT Said all the teats were normal. THEN a neurologist in November diagnosed MAV also known as Vestibular Migraine. He put me on the migraine diet ( that's what is recommended in the heal your headaches book) but like you I'm not convinced about that. He put me on an anti-epileptic drug called Gaberpentin (Neurontin) and nI am gradually increasing this. It IS working. I rarely have those dreadful incursions in my head and if I get any they are mild. All the nausea has gone. Still unsteady and feel like I'm on a boat at time but not all the time. Have good days among the bad. The medication makes me rather spaced out and very tired. There is also the weight gain. But all in all I think I'm on the right track. The neurologist said with VM (MAV) it is the brain stem that is irritated and the neurons then and off all the wrong signals to your brain. He likened the pills and diet tomlike putting on sticking plasters till it heals. I hope he is right. 

Someone else suggested Facebook. I agree. Try Vestibular Migraine Professional. That's a grain forum. Also Dizzy Times 

good luck...it's a rotten condition which most people don't understand.

6

So Sorry you're having such a bad time of it and for so long, good you have a strong faith to keep you going, likewise so do I. Mine only started in 2013, so you have been at it much longer, I am 59 and my consultant felt it was triggered by meno pause.  I also have regular attacks of BPPV, and have been diagnosed with both Silent migraines causing visual vertigo and BPPV.

I take nortriptyline 10 mgs which has been very helpful.  I also have a bulging neck disc which I think is part of the overall problem.

All best wishes, stay strong.  God bless.

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thanks for the replys thus far... toanswer some of the questions

My Vit D and B are normal as well as Iron...take magnesium daily so that also is fine

I do have forward head /neck posture because all I can do all day is be on ;laptop or tablet... But was told by neurosurgeon that my herniated discs are NOT causing the dizziness.   I question that.

I do indeed still have my wisdom teeth and they have never given me any pain or problems...so how could they be causing this?

Gabapentin was offered to me also but I refused do the fact that you can not just stop it at any time...must wean off of it therefore its addictive...NO thanks

anne05147, mine got bad in June 2015...so you have been battling longer then I with it this bad...

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How do you like the Nort.?  how long have you been taking it?  I went into meno at 52 , just turned 58 in Dec.  so besides meno causing havoc in many different ways...this started well after that.

I am a mess and guess I will have to take something to relieve all this but nothing that I can't stop at any time...Gabapentin can not just be stopped..so I refused it...can Nort>?  will have to google it and see

9

If it is vestibular migraine, then you were on the wrong medications.  Migraine specific drugs, such as triptans, are the medications of choice for this condition.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

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I am keeping the Nortriptyline at 10mgs, it has also relieved my neck/shoulder pain which is completely gone now, it was making my daily life miserable as I still work and was struggling with the pain in my neck/shoulder and stumbling like around as though drunk when all this first kicked off.  Just rolled over in bed one night and that was the start of the BPPV, then the visual problems and balance and co-ordination problems, and once got out of bed and fell to the floor, had to crawl around for a while, still went into work but had to go off sick.  

I would not want to take any strong pain killers or NSAID as need to be able to drive and have recently become adverse to NSAID which were causing upset stomach and affecting my kidneys.

I have no problems with nortriptyline but increased dosage might be problematic as am very senstive to meds more so as now older.

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My Neuro-otologist has put me on Gaberpentin. Not a Triptan. 

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I have been on this forum for over a year and when I read what everyone goes through it makes me feel better to know that maybe it is all anxiety but when I get the head pressure I become a nervous wreck. I find it hard to believe that nothing is wrong even though I had MRI and carotid artery test and blood work all negative. I know it has to be anxiety because I feel good when I go to bed and at around 4 or 5 in the morning it starts again. It's like my body knows the day is beginning and let the head pressure begin. As the day progresses and the more I think about it the worse the pressure. If I go out I am a wreck and once I get in the comfort of my home I feel a little better. I know this must be anxiety because a few months ago my husband had surgery and I needed to take care of him, do all the driving etc and in the 6 weeks I had to do this not one day of head pressure or dizziness. The day he was able to start doing for himself, the head pressure gradually came back. I am tired of living like this. There are times I feel like I am going to go cray but i convince myself it is anxiety. I want this to stop and feel normal again like I did when I was taking care of hubby. I feel sorry for all of us dealing with this and pray we all feel better soon. Thanks for listening

13

OH how I wish this was ALL anxiety but unlike you I have it all the time..

I had several xs in last few months that I had to take family members to ER and the WHOLE time I was a mess...nothing distracts me.

I have anxiety and this is NOT that, although the anxiety exacerbates it for sure

besides if it was ALL anxiety valium would fix that too and it DOES NOT

so if you know yours is anxiety that can be fixed...Counseling..meditation..exercise...heavens please saty away from the psych drugs though.

I too wake with cortisol surges 4-5am  and that is anxiety...but the whacked out head etc is something else...be it MAV or benzo withdrawal...I do not know. What I do know is this is NO WAY to live.

So all I do is pray and CRY constantly...I need help and hope that the neuro-otlogist will be able to give me some help

14

9/12  is that years or month and day?

you went that long before dx?

I never get nauseated PRAISE GOD...but all the rest...yes my eyes go in and out of focus a LOT. 

glad you are finding relief with the med

15

Sorry to hear you go through this. I have read so many posts this past year and everyone associates with anxiety because tests show nothing. I just don't like when I feel like I am going to jump out of my skin that scares the hell out of me. Up until Last December I never let anything bother me things just rolled off with no second thought. Now everything does me in. Everything I do, driving, working just sometimes going out. I am 67 years old and don't want to live what I hope it another 15-20 years or more living like this. 

16

Work???  Oh my how I wish I could work...I can barely drive most days. smallest tasks take everything out of me...I must be an extreme case...mine is bad.

When I take motrin I do get a bit of relief, but like you, I try not to take them very often...once a week..I have Hydronephrosis...and have no idea if it would harm my kidneys further

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So would Nort. not be a good choice?

18

Lainey I'm the same way, I've had to drop all my college classes and haven't driven in 5 months. Showering is even a huge task for me, little daily tasks are ALL I can manage as I have symptoms 24 hours a day. They never go assy

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showering....oh don't get me started on that..I dread showering

I am so sorry you are suffering and so young...This is TORTURE

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If not for my Husband I have no idea how I would survive...he does all the shopping/cooking and works ...while I sit