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Author Topic: Dizziness, Vestibular Migraine anybody?  (Read 7335 times)

Rosie77

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Dizziness, Vestibular Migraine anybody?
« on: April 03, 2019, 09:06:52 PM »

Hi ladies, I have read through old posts, but cannot find anything current...or follow ups.  Hopefully, the original posters found relief and are living a dizzy free life!

Does anybody have or had dizziness, off balanced everyday?  Been a dizzy mess for almost 2 years.  Tested for everything...I am a very healthy girl on paper, but feel terrible!  I have vestibular migraine. Just to make things interesting... Also, my ovaries have gone out of business...January was possibly my last period...FSH was over 170. 

Just started HRT, on week 3 now. .05 Estradiol patch.  100mg progesterone pill. I am nauseous and wobbling all over. 

I am also taking nortripyline for my chronic migraine.  Vitamins: magnesium, fish oil, vitD, coq10. 

On a high note, my mood is improving, my anxiety is lower and my fatigue is not as bad,  But, OMG, I just want to fall over with this whoozy head.  I am going to stick it out for at least 3 months no matter what!  But, anybody have any experience?   ::)
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Letmein

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #1 on: April 04, 2019, 07:17:01 AM »

That was me! Suffered from dizziness and lightheadness for about three years. It also affected balance and I became convinced there was something very wrong with me. I was referred to ENT than for a brain scan, all fine. It was always much worse first thing in the morning but would also happen out of the blue during the day. I sometimes felt really sick with it too. Also had pins and needles and tinnitus.

I started hrt and if anything it only got worse and after 3 months decided to give it up. This was a, year ago and since then, it has gradually got better to the point when I haven felt it for a couple of months now. I think in my case, it was the surges of oestrogen that caused it rather than the reduction of it. I've now passed the 12 months post period.

I hope hrt does work out for you better than it did for me. We are all different.
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Robin

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #2 on: April 04, 2019, 07:29:05 AM »

I've struggled with dizziness, nausea and migraine for several years. HRT has helped quite a bit with all 3
« Last Edit: April 04, 2019, 07:40:52 AM by Robin »
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #3 on: April 04, 2019, 11:16:57 AM »

Thanks ladies!  :thankyou:
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Sgtvhilts

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #4 on: April 05, 2019, 09:14:34 PM »

Yep,
I get dizzy, usually when i am straightening up.  Started about 4 yrs ago.  Luckily i am not swimming all the time.  On HRT, but still get dizzy.  THis forum was a lifeline as i really didn't know before that dizzyness was a meno symptom.
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #5 on: April 05, 2019, 11:58:17 PM »

Oh yes!  Vacuuming is the worst! My head whirls.  I do my cleaning as vestibular therapy 😀
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warwick01

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #6 on: April 08, 2019, 01:42:51 PM »

Hi Rosie

I have suffered with the same symptoms as you for 10 years both prior to and taking HRT. All started in perimenopause with 10 days around period time dizziness and balance were horrific. I saw ENT plus  Nero who never mentioned VM told by ENT was from Labrinthytis and I would need to live with it >:(

Only from my own research and reading an article by Dr Silver have I figured out it could be  VM. I find certain HRT makes it worse so sticking with 2 pumps of gel. Life has been tough, give up my job and don't like walking in busy public places. By the way GP said it could be anxiety (typical) driving is a trigger too.

Pass on any tips!

Wx
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Turkish delight

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #7 on: April 08, 2019, 02:32:32 PM »

Hia, sorry to read your suffering so badly, you and all the others who have posted, it's awful

I had this but during the beginning of peri, I'm further along in peri now and it's subsided. Used to get it when clothes shopping, just a woozy wobbly gate. Didn't know it may be linked to menopause at the time but now I see all roads are linked to menopause in some appaling long arse joke life plays on women  :cuss:

TD
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CLKD

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #8 on: April 08, 2019, 02:56:41 PM »

I have a nerve int he back of my neck which can make me go 'oh!' when it causes me to feel 'odd'.
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #9 on: April 08, 2019, 08:35:48 PM »

Went to see my GP today for follow up.  Now, I have to see a rheumatologist.  Great, haven't seen that kind of dr yet!  Just pass me down the line!  Also told me I need to make lifestyle changes.  Mmmm, I don't smoke or drink and if anything I could use a couple pounds on me.  Perhaps what he meant was I should start drinking and smoking!!  ;D

Turkish delight...indeed this is a cruel joke!  I am the same way, I run in a store for a couple of things and it is like the floor is dropping out from underneath me!

Warwick...I understand completely.  I too had stop working... I hate driving too. I only go if absolutely necessary. When the car stops, I still feel in motion and the nausea 🤢. I am only on nortripyline and HRT.  Went to dr last week for the VM.  10 minutes in the office only to be told to increase my med and follow up in 3 months. 3 hour round trip for that.  🙄

CLKD...I have a referral to a pain clinic...that nerve gives me troubles too.  Occipital...I believe.  I hope maybe a nerve block can help. 
« Last Edit: April 12, 2019, 08:00:15 AM by Rosie77 »
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PeriWhat?!

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #10 on: April 09, 2019, 08:34:54 AM »

Posting to mark this thread to see how other people handle this.

I've been getting a lot of dizziness lately - like a lot of my early peri symptoms I originally put it down to tiredness and bad headaches (my kids are young, so I get f**k-all sleep so am used to feeling dizzy after a sleepless night, other stress, not enough time in the day etc etc), but it's now at the point where even if I've had sleep, the slightest motion can set me off with (sober!) room spins.

Is there any point seeing a GP? What about driving?

It's interesting that others have spotted a pattern to the dizzy spells, so guess I should keep note to see if there is a pattern related to periods or anything else (other than tiredness).

Any other tips? I'm 43, I guess relatively early peri, still have periods but for the past 18 months very very randomly and overall lots more of them than ever before. If all the extra blood loss was a factor, wouldn't the dizzy spells be limited to during actual periods?
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #11 on: April 10, 2019, 12:52:03 AM »

Hi periwhat,

I am dizzy 24/7 since my periods went wacky 2 years ago. Much worse when a period was due...whether it came or not!    Yet, my iron levels, etc were always fine.  The dr that diagnosed me with vestibular migraine is an oto neurotologist.  Did vestibular testing which induces vertigo and made me sick. This rules out inner ear damage. Lovely to have a name for all my symptoms...but I really would like relief!  I wish I had more helpful tips.  It came on out of the blue and I hope it goes away at some point.

My advice to you is, try and get some help...went a year and 1/2 running around in circles feeling worse everyday.  Seriously thought my mind and body was shutting down. I am trying to tackle it both ways with med and HRT.  Time will tell.  I guess.  Best of luck to you whatever you decide!
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Lynnhunter

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #12 on: April 10, 2019, 09:15:16 PM »

Hi ladies,
Funny thing this VM I've just got back from seeing ENT consultant, hoping to get some answers to my ‘dizziness “. I don't have vertigo or labrynthitus. But turns out I have VM.. I'm still in shock, says factors contributing to it is my bad back and hormones :o
He gave me letter for my doc for 10mg of nortriptyline.. on a 3mth trial says it will benefit me as it will help with anxiety and panic attacks that I'm having driving to work..
I'm so scared of AD's I don't know what to do!! Is this meds for my VM or my anxiety I'm so confused and head is bursting thinking of it all...
Any advice please..
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #13 on: April 10, 2019, 10:11:04 PM »

Hi lynnhunter,

Sorry you are dealing with this VM business...but glad you saw someone knowledgeable about it!

I have been on Nortripyline since Nov.  Started at 10mg, now I just started 40.  It is a very old head med, however, it is used off label as a migraine preventative.  To be an effective as an AD doses would be 100-150 mg.  But, there are much better stuff out there to manage anxiety and depression...nortripyline is old school and not used really anymore as an AD.

I tolerate it very well.  I am very sensitive to medications as most with VM or migraine are in general!  If you do not want to start on 10mg capsule.  You could always ask for nortripylines cousin amitripyline...that comes in tablets and you can cut it up.  I was on amitripyline before, but switched as I was really tired on it.  But!  Some like it for sleep.

Good luck!  But, rest assured...they are not pulling the wool over your eyes! 
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Rosie77

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Re: Dizziness, Vestibular Migraine anybody?
« Reply #14 on: April 10, 2019, 10:21:26 PM »

Hi again Lynnhunter,  just curious...What did your dr say about your back contributing to VM?  I have arthritis in my neck and degeneration in my lower back. The dr I saw also said hormones are a trigger.  It took me 18 months and a million tests to find the right dr.  My problems started 1 month after stopping long term birth control pill use at 40...then I got worse because nobody could explain what was happening to me!
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