Dizziness

Hi Chris.  Yes, had the MRI on my neck.  Shows that I have bulging discs and some stenosis.  Was told to see a surgeon, which I didn't do.  Not subjecting myself to that unless it's imperative..........

I do think neck issues are a major source of problems - like Grand Central station!  On days that my neck is the tightest, my symptoms become more pronounced.  Seems too logical huh?

Nanci, mine basically has severe stenosis in a number of places and some odd flares but I have no pain! Wouldn't have had the mri if not for the dizziness. Just annoying peripheral neuro issues now that could be myelopathy related so ms or stenosis, b12 etc. They can't decide. I wake up everyday, wiggle my toes and relax! Thankfully the dizziness has pretty much abated...I still think the vestibular neck exercises aggravated a previously benign (at my age, 52) c spine issue and brought if forward a decade...but wadda I know, I've only been telling the Dr's what to do for 7 months. .

Hello again.  Well, I am happy for you that the dizziness has improved.  I find that to be the most awful part of all of this - feeling in a fog and at times like I could pass out.  Have you ever tried physical therapy?  I consider surgery a last-ditch effort to treat neck problems.  However, I have been told there are new, less invasive treatments involving neck decompression.  Unless I was having difficulty with my arms or hands becoming numb, I wouldn't seek surgery.  I think I was "damaged" by an over-zealous chiropractor a few years ago.  I knew better than to let someone "crack" my neck, but let him go ahead. 

Yes nanci, I agree the fog is the worst part, I suffered for months with it and grew increasing annoyed with Dr's telling me it was anxiety. My spinal cord definitely has some issues....I'm in a limbo while the neuros discuss. I don't really want a lumbar puncture....but nor surgery! I try and enjoy my good days and not worry too much. I hope yours resolves soon.

Thank you Chris, and I wish the same for you!

Hi Anne.  So sorry that you too are feeling less than stellar............

I so agree - really believe most of these problems are neck related.  I  have experienced vertigo in the past a few times.  The last time it  happened, I sort of hyperextended my neck and the spinning stopped.  If that had been caused by an inner ear issue, I don't think that would  have helped.  Around 5 years ago, I had gotten the flu, and from congestion, my left eardrum ruptured.  After seeing the ENT and being told it had healed fine, I began with the dizziness.  I wonder if I suffered some sort of nerve damage - from a virus maybe - but again, the rest of my symptoms seem to be neck related. 

Hi Nanci  all my problems started about a week after a physio did some back crunches on my spine, which winded me,  and i can't help but think she damaged me and caused the dizziness. She did these back crunches because of my neck problems.  If i never had these back crunches done then i would just accept my problems are from some other cause but i feel what she did was the trigger to all this as the timing of my dizziness starting a week later seems too much of a co-incidence.   My GP said it was highly unlikely but I'm not convinced. It's pretty academic anyway cos' i can't undo the damage she did if that was the cause, but i am very reluctant to have any further manipulations to my neck or back in case i end up worse off.  It's a hard one to know what to do for the best for fear of making it all worse.  I can just about manage at this level to carry on working so don't want to take the chance that it will end me being able to work.  I saw a consultant many years ago who saw the x-ray of my neck and she said 'that's going to cause you a problem'.  I would only consider surgery as a very last option due to the high risks of ending up worse or no better.  

Hello again Anne.  Have you had an MRI recently to see the condition of your cervical spine?  It may hold a clue to some of your issues.  Obviously being dizzy can come from many issues, but I clearly feel a link to my neck.  I was tested for Vestibular disease, and told I had none.  I also know that when my neck becomes very tight, my ears ring and I feel "out of it."  Another issue is being congested.  I read some posts previously that people had said they were very congested, making their head feel like they were in a vacuum.  I have that feeling at times - sort of like just getting out of the pool.  I take an antihistamine everyday to try and relieve that.  I live in the desert in AZ, so the dry air is better for this than being in humidity I believe.  I do notice a difference when we have the monsoon season in July/Aug. that I feel worse.

But again, unless one is tested for vestibular disease, it can't be ruled out.  Once it is, onward to considering allergies, neck issues, hormonal issues, etc.  Hope you find relief............

thanks Nanci, i think my next request will be an MRI spine.  I don't know if it is possible for a physio treatment to put your spine out of alighnment. I have found reading others comments on this problem though a great help because otherwise i would never have requested a referral to an otoneurologist who says i have silent migraines.  It really is like looking for a needle in a haystack as there is not much on offer as far as a treatment that actually works.  I have taken all kinds of meds over 2 years which haven't even made a dent to my symptoms apart from the nortriptyline which seemed to work well for nearly a month but i then had a surgery with general anaesthetic and appear to have gone backwards again.  I will be seeing the otoneurologist again next month and may have to increase the dosage but that in turn increases my tinnitus i have noticed.  I agree that weather very much affects this condition and my left ear is the most sensitive.  Last winter i became so congested i could barely breath and started having a panic attack when i woke during the night because my nose, ears and throat were so blocked I was struggling to swallow.  The only thing that really helped were Sudafed, the one they keep locked up behind the counter, as there are 2 formulas,  and a steroid nasal spray. I also feel that kind of spaced out feeling, where my vision seems unable to focus, but the neurologist said this is part of the silent migraines.  I really have reached a stage where i haven't got a clue what's going on really.  He said that all the recent changes in age, the menopause and particular food triggers, stress are affecting me so that i am have cluster silent migraines that affect my balance and my vision,  I'm 58 next week but in the past 2 years have gone from being reasonably okay when i went to bed one night to waking up and with all these problems with balance.  I hope yourself and others with this eventually find something that helps, because there must be something we all have in common despite our differences/diagnosis that is affecting our balance system, whether thats vestibular, cervical arthritis or a combination.   Onwards and upwards.

Funny that you mention being 58, because all of this stuff started with me at 58!  Not so funny huh?? 

I wonder also if there is a hormonal issue involved, and definitely an allergy. I never had any allergies in the past, but that can change as we get older.  Plus, God only knows what we're exposed to now that we weren't exposed to before.  Don't want to sound paranoid, but ???

I experience migraines also - have been told I was the "classic Vestibular Migraine patient."  I had an ocular migraine once - thought I was having a detached retina, but was not.  Migraines and vertigo are related according to my neurologist. 

Do you use hormone replacement?  I have read where estrogen can cause problems in some women. Either that, or it can help.  Helpful huh?

Interesting that you mentioned using the Sudafed.  I will be trying a decongestant next if the Allergist agrees. 

I definitely think that having a "as you say physio treatment" (is that the same as a chiropractic adjustment?) can cause problems with your neck.  Gentle stretching is better than being "snapped" as I was, and like it sounds happened to you.  I was told by MRI that I have a tear in a disc.  Doctor asked me if I had ever been in an accident, causing a whiplash?  Told him no - only "whiplashed" by the chiropractor.  Can't undo that either. 

Having major surgery is somewhat of a shock to your body, so that may have taken you back a little.  I don't know - there seems to be so many things that can cause your equilibrium to get "off" that it's hard to pinpoint it.  Try your best at relaxing your neck and shoulders.  Also rule out disc issues, vestibular disease, check for allergies, and have an eye exam.  I hope any of those things can and will help you.

thanks Nanci for all your suggestions. I am on HRT and now wondering if it is that.  I am goind to set a date to come off all meds whilst on holiday next month, hrt, nortriptyline etc.,  see what happens.  Thanks for all your support.  Stay well.  Best wishes.  Anne.

Hello again Anne.  I wanted to ask you about the HRT.  What type do you use?  I have been using bioidentical hormone pellets for at least 5 years.  I would wonder if they were causing any of these issues, but it's been 9 1/2 mo. since my last pellet insertion, so highly unlikely.   After a while, you just begin to suspect everything I guess.  I wish you well in your journey towards health!

Hi Nanci i am on elleste duet, 1 mgs estrogen and progesterone of which i take only half a tablet a day so 0.5 mg which is effective, but i am considering reducing this even further and then seeing if i can stop. Are you on progesterone only?  My doctor has suggested progesterone only but i was unsure.

Hello again Anne.  I was not familiar with elleste duet, so I looked it up.  I'm not sure if this is a med that is used in the United States.  As I mentioned before, I use bioidentical hormone pellets.  I am given both estradiol and testosterone pellets, which are implanted in my hip twice a year.  They are made from soy, which is supposed to be the most comparable to hormones produced by our bodies.  I do not need progersterone, because I had a hysterectomy in the past.  Progesterone is necessary to prevent uterine cancer that can be triggered by estrogen thickening the uterine lining.  Some side effects of the elleste duet include dizziness, but I think most medicine descriptions mention that as a possibility.  Have you ever been offered the bioidenticals?  I do think they are used in the UK?  Bioidenticals are supposed to be safer than other forms of HRT.  They've been around for many years, but many doctors don't use them.  Both of my female gynecologists use them on themselves, so I guess that makes them seem safer to me.  It's hard to know what to believe with our health.

Hello Nanci, no i haven't been offered them but i am going to mention them when i next visit my gp or see if i can get something similar elsewhere.  I'm going to look up the side effects again on the one i'm taking as it would be bizarre to find after all this that it may be this med causing my problems, but i am doubtful, but i will stop taking it whilst on holiday and see if it makes any difference anyway.  Do you feel better for having a hysterectomy?  I hope so.  I was going to have one as having irregular bleeding following menopause as have numerous fibroids, but have decided to wait a while to see if my body can adapt, this is why i would like to stop hrt as the estrogen is contributing to the fibroids.

What a game

Hello again Anne.  I will be interested to hear if your doctor is familiar with the hormone pellets.  From what I'ld heard in the past, Europe began using them before the U.S.  But, many doctors here don't provide them, and our insurance companies as a whole will not cover the cost of them, which is around $300.  Another whole subject with insurance.........

I had a hysterectomy at age 37.  I also had large fibroids, and since I had already had 3 children, decided to have the surgery.  I had been bleeding heavily, and was anemic, so it made sense.  Yes, I felt better afterwards because of no more heavy periods.  My ovaries were left intact, so that didn't cause "instant menopause."  I really have never regretted having that done. 

 

glad to hear you felt all the better Nancii following your hysterectomy and of course all the difference for keeping your ovaries and not being dropped in early menopause.  I read a newspaper article recently that said these dizzy problems can start pre menopause and after menopause causing migraines and silent migraines and neck pain etc.,  and can last up to 4 years whilst body adapts to fluctuating hormone levels, if that's the case hopefully only another 2 years of this balance probelm

Hi Anne,

It's just so hard to figure out what causes different problems with our bodies.  Hormonal issues possibly as you mentioned, but structural ones as in stenosis, and possibly allergens, or even different diseases?  Hardest part is to find the cause and then hopefully treat it.  I hope that  you will not be troubled another 2 years with any of this stuff!  I still believe that being congested and the neck issues are the major culprits.  Because of being dizzy both with and without hormone replacement leads me to think that's not a factor - at least in my case.  Wouldn't it be so nice if the doctors even agreed with one another?

I agree Nanci, i think each individual has to become their own expert particular to their symptoms and what triggers them.  For myself i am totally confused as when i think i may have found the triggers it turns out it could be something else.  I had neck problems, with bulging neck disc, but at the moment my neck is not hurting, it might be that the nortriptyline is helping with that but i think i also have silent migraines which cause the balance problems, but then i have also had 3 bouts or more of BPPV.  I now think it's anyones guess what's going on as far as i'm concerned.  I had a good day at work today even though feeling slightly off balance and i took 2 ibuprofen before i went to work which seems to give me more energy.  I took them because i felt not a pain but a dull ache at the top of my head and behind my left eye.  Ibuprofen has always worked well for me but have to be careful because it can affect my kidney function, so now only take them sparingly, yet tonight i don't feel off balance at all.  I don't have any congestion at the moment whatsoever but of course that always worsens this problem.  The thing that helped me most with that was a steroid nasal spray Acumist i think its called.  I only used it for about a week and nasal congestion completely cleared.   It good when a medication actually works.  I'm reluctant to take any more meds than absolutely necessary as all have side effects.  I am going to try and come off the nortriptyline as it worsens my tinnitus.  Sometimes i feel as though i am sounding like a hypochondriac but this condition can leave you feeling a bit that way when you try to describe the variety of symptoms, because they are so wide and varied.  I agree with you that i don't personally think it's the HRT but i am going through a process at the moment of trying to eliminate even those things i think might be unlikely.  Let you know how i get on with that a few months down the line. 

Anne, you have so many of the same descriptions for how you're feeling as I do.  And, being a migraine sufferer as well, I've been told can lead to some of these symptoms.  I was told I had bulging discs, a bone spur, and some stenosis.  At the time, I was very uncomfortable and told to see a surgeon, which I did not do!  I consider surgery the last option, and at this point, my neck isn't hurting as much.  I do have stiffness, and that in turn goes into my shoulders, but taking an Advil now and then seems to take care of that.  I agree - try to avoid using much medication, as it all has a consequence.  I am really interested in seeing if an allergy is related to this feeling "off" and being so congested.  I'm seeing that guy next Thu. I bought some Nasocort the other day (spray) but can't begin to use it until after I see the allergist.  I was told to not use any antihistamine or sleep enhancers, since they contain Benadryl, and those meds would alter the allergy test results.  It should be an interesting week not using anything for congestion. 

I question my own sanity sometimes, and also feel like a hypochondriac to myself and I'm sure to my friends/family.  But, you and I know when we're not feeling well, and until I do, I'm not going to pretend that all is well!  Think I mentioned before that I had a few bouts of Vertigo as well, and the last time, I hyper-extended my neck and it stopped.  That convinced me that my neck was "the root of all evil"  - or at least a major contributor.

So, yes, I would like to hear back from you if you are able to figure out what has been causing your problems.  I will also tell you what if anything I accomplish with the allergist.  Take care!

will do Nanci, let me know how you get on and so will I.  I think it definitely sounds like your neck is the source of all you problems and i wouldn't be surprised if mine is also. 

Hello again Anne, and Happy Birthday if I remember correctly!

So, I saw the allergist on Thu.  After all is said and done, I would say I accomplished nothing with him.  After not taking an antihistamine for a week prior to the appt., I didn't feel any more congested than when I take them.  I told the doctor that, and he said he's heard that many times before.  I had the tests done on my back - 58 pricks - and was told that I have allergies to mold, tobacco, some trees and some plants.  Said I am not bothered by dogs, cats or cockroaches!  Great - think I'll run out and buy myself some roaches!  Anyway, he just suggested using Nasacort (which I had already bought) along with Afrin.  Although he was sympathetic to the symptoms I described - and he said he hears the same often from other patients - he really didn't have any answers.  So, I guess I can check him off the list of "someone who can help."

It's very frustrating when you make the effort to see a doctor, and leave feeling like that.  Of course, it has now become drier here, since the summer storms have pretty much ended.  I believe that makes a difference in feeling less congested.  However, it is becoming Flu season, and in AZ a whole new growing season begins in the Fall. 

I re-read some of our previous letters.  In one, you mentioned taking Ibuprofen and feeling better afterwards - less dizzy.  I think when I take it that I feel the same way.  I guess I attribute that again to relaxing my neck.  Since it is an anti-inflammatory drug, that would make sense.  I'm back to thinking that my neck is the major culprit in all of these issues. 

Hi Nanci thank you.  What a disappointment about your appointment, i'm going back tomorrow for balance testing and follow up.  The pain in my neck is relieved by the Nortriptyline and agree that ibuprofen helps as a NSAID (non steroidal antiinflammatory drug).  Sorry you didn't get much help with your congestion but as you say it is seasonal. 

I think everything probably affects ENT as it is such a finely balanced mechanism.  I was reading the other comments about the neck and think it is all revolving around my neck too, causing tension etc.,

I'm not expecting much when i go for my appointment tomorrow, so i won't be disappointed  Take care and good news that you're not allergic to cockroaches 

Hello Anne,

Talking with you only makes me suspect more than ever that this is a neck/tension problem.  How bad it is, or what all has to be done for it is the question.  Another drug that I have been given and use sparingly is Valium.  My GP ordered it - said it works as a muscle relaxant.  I use half a tablet at bedtime occasionally.  I have also tried Advil PM from time to time.  Both seem to give a little relief, and at least I wake up less uncomfortable.  Seems like on days that my neck is really bothering me, I feel the most dizzy.  I sometimes experience a migraine with neck tension.

I hope that your test tomorrow will be of help.  Not sure which type of tests you will have - are they for vestibular disease?  Hearing?

I'll be interested to hear how it goes, and hope that you will find some definitive answers.  Good attitude you have going forward!  As they say, "Pessimists have fewer disappointments!"

Good luck and let me know of your results.  I'll be out collecting bugs!

Hi Nanci 

I'll let you know how i get on.  I would like to think that i'll have a more positive outcome but after 2 years of seeing so called 'specialists' i get the feeling they don't really know much about how to treat these problems.  I think any problem with the neck tend to be overlooked and they just go straight to thinking of all the other problems that could be causing it rather than what i have always said to them 'i think it's my neck' then they try to blind me with science and tell me it's all these other things.  I think i am having more vestibular tests tomorrow which i think may be the same as the ones i've already had done last year, if it involves the one of pouring water in my ears again i think i will decline, because i came out of that one before soaked. 

Let me know when you get back from bug collecting tomorrow and i'll tell you how it went

HA!  Yep - I may as well be collecting bugs......

One thing I wanted to mention...... When I had the VNG (vestibular test), they didn't use water, but rather hot air.  All in all, not a pleasant experience as you well know.

I so agree - when it comes to these symptoms, the doctors seem stymied!  Seems like something an neurologist should be able to figure out.  Oh well - just hope you learn anything to help you tomorrow.

take care!

Hi Nanci & Anne,

I'm with you girls. I definitely think my neck is culprit. As soon as I get stressed, or now, preparing for Thanksgiving dinner, I feel my neck stiffening, then the dizziness and headaches, oh and let's not forget my back. I'm on Atriptyline now, 3 days, since Nortriptyline sent me on some trip. Better control of headaches for now. Storming in a few days so I shall suspect it will be worse. But, yup, definitely sounds like the same $#%^...lol.

Hi Marie,

Well, we do seem to have a consensus on the neck stuff.  So, now what to do?  Has anyone tried a muscle relaxant?  Closest thing I've used is the Valium.  It does seem to help, but can't walk around all day with that in my system, so I use it occasionally at night.

It's such a shame that insurance won't cover expenses for massage therapy.  You would think that having a patient avoid a surgical procedure would be smart cost protection for them............

The neurologist prescribed Meloxicam, 15 mg, for 10 days, then take as necessary. Instantly upon taking this med, I felt the pain in my neck diminish. Do I still feel the neck tension when I'm stressed or forget to focus on my breathing, yes, so I need to focus on correcting my posture, do my neck muscle exercises & massage the SCM and remember to breathe so I don't stiffen up. Some people with stress have stomach issues, my body reacts to stress by sending my neck into a spasm. 

Thanks for this information Marie.  I will check into that.  I have the same reaction to stress as you - directly goes to my neck/shoulders.  Not fun!

Hello Nanci

back from my appointment with consultant and had some more eye tests done with googles and following a dot and then some balance tests on a platform that measured how much i'm swaying and then some other googles where he shook my head about and i had to stare at a red spot.  The googles were so tight on the bridge of my nose it was distracting and despite adjustments i ended up with a sore, red nose.   All test were OK except the last one which he said a few people had an odd result for which he thinks is due to the computer not working. 

He said i will probably need to continue with meds for at least another 9 months whilst waiting for my brain to heal (I assume from the imbalance caused by silent migraines).  He said the general anaesthetic i had in august would have set me back(which it did as i was doing well before that).  I didn't mention my neck again because mostly since taking the meds it has been OK and for the moment i just to get on with my life.  He said to increase these meds to 25 mgs if they are not having the good effect they had before the surgery.  I'm not going to though as feel i am doing much better than i have for a while and going to try to further restrict my diet and see how it goes and increase if i still see no further improvement.  He said within a year i should be able to eat what i like.  I am taking these meds reluctantly but know they have helped me so don't want to spoil my improvement as it has only been 3 months since i started this treatment. I said they have made my tinnitus louder in my left ear but he said it shouldn't have any affect on tinnitus but it has been increasingly louder lately.  Hard to say. 

He will review me in 6 months time.  I will be going on holiday next in 9 days time and flyng using sets off my ears again, so waiting to see what happens this time.

Anyway that's my update.  Back to work tomorrow.  Hope you are feeling well today.  Best wishes Anne.

 

Hello Anne,

Well, first, I remember when I had the VNG testing, that I too left with a red mark on the bridge of my nose from the tight goggles!  That was attractive.

For as much as I do not like taking meds, if something is helping, I guess you need to continue using it.  Overall you sound like you're feeling better today, so I'm happy to hear that.  I feel about the same - still somewhat dizzy and congested, but nothing I haven't learned to live with.  I still look at all this from the prospective that it's coming from my neck -  not being congested, but feeling dizzy.  I'm trying to relax my shoulders and neck as much as possible.  I think before the year is up, I should go back to the neurologist and have him reorder an MRI on my neck to see if there have been changes. 

Make sure to use your nasal spray before you get on the plane.  Flying bothers me now too, and it never did in the past.  Oh, and I would agree with you that the Nortriptyline could be causing tinnitus - many drugs do.

Enjoy your time off, and take care!

thanks Nanci.  The first set of goggles was OK, but then he put another pair on for another test that were cutting into the bridge of my nose.  Because his computer was playing up he kept redoing it, until in the end i had to say this is making my nose really sore and it was really distracting me from the test as it was going on for quite a while.  I felt quite good this morning but after all the head shaking he did with me  felt a bit dizzy later in the day.  Also my neck was creaking as he turned it this way and that.  Always sounds to me as though it has 'snapped'.  I know i have a bulging neck disc so this is not news to me.  The GP offered me physio for it, but i think it was the physio that i had for it 2 years ago was what started all this, so not.  I am gradually improving so don't want to be set back and this is the most consistent i have felt in a long time.

 All my tension goes to my neck whick doesn't help and even the physio said 'try to drop your shoulders' but to be honest i don't even know what that means when i try to do it. 

The Nortriptyline hasn't caused the tinnitus as i've had it 19 years following a concusssion but i think it has made it worse.  I think i will stick to this treatment though because i know there is a lot of tension in my neck, shoulders, and possibly causing these tension headaches and the visual and balance problems but as my neck pain has gone since being on these meds it's at least a starting point. I try to do my own exercises to loosen up my shoulders and have regular breaks at work from the computer etc., now that i am more aware of how all this could be affecting me.

Thanks for the tip about the nasal spray before flyng.  Will do.  The nasal spray i was given, as i was really congested, could barely swallow as ears, nose, throat felt congested when i tried to swallow, it really helped me and i haven't had to use it since last year.  I think it's called Avamys.  Have you tried it?   

 

Hello again!

No - haven't heard of Avamys.  The allergist I saw last week suggested Afrin and Nasacort - using both together.  I told him that I had heard Afrin was habit forming, and people had a hard time getting off of it.  He said "well, they weren't using it right."  (?)  Other than sticking it in your nostril and spraying, how could you not use it right?  Anyway, I used only Nasacort today, and as of now, see no improvement.  For as much as I feel the dizziness stuff comes from my neck, combine that with being "underwater" all the time, and I just can't feel "like me."

Those tests for vestibular disease are no fun.  I didn't feel too badly after I had them done, but I was told to expect to feel nauseous and dizzy, so I dragged my poor daughter with me.  Anyway, I got no relevant findings from that, so to me, that was another bust.

The one physical therapist I had seen insisted that I use a firm lumbar pillow when sitting in front of the computer.  He said it puts your head in a better position.  I don't sit at the computer too often, but I try to sit correctly - feet on the floor, and hips back in the chair.  I think between computers and cellphones, everyone is hunching over now. 

Having an adjustment that snaps your neck isn't a good idea.  Think we both found that out the hard way.  But, gentle stretching - like when someone holds up the back of your head with their fingertips and sort of pulls it seems to offer some relief.  That stiff, painful feeling that you get at the base of the skull - all tension!  My neck creaks and crunches too - just become more musical as we get older huh?

Ever tried yoga?  I haven't but I think it could probably help. 

Well, I am happy that you have been doing better!  Take care.