Possible wrong diagnosis?

Steve, it could be hormonal, chemical balances gear up a notch in the hour or before waking. Also heart rate and BP start increasing. But if it a mechanical neck issue, the body grows during the night by about half an inch..getting back what gravity took during the day. My lhermittes sign is worse when I first get out of bed, I can only put that down to the neck vertebrae being positioned differently at night...

Hi Steve,

I have been on this site for months now as I was diagnosed with VN back In february and wanted to gleen more information on the subject .My condition developed slowly as I had the initial spinning on December 19th 2014 but did manage to work for the first month before evntually going to my GP and then seeing a specialist, I have not worked since and was dismissesd by my company back in August.  Over the next 10 months I developed different symptoms to what I had from the start and like you now suffer most days with a stiff neck and pressure across my nose, this though can come on at any time of day but I do generally feel worse in the morining but oddly again at around 5pm for a couple of hours. I have also been told that I may be suffering migraine (something I never had prior to VN) but the consultant I see (Mr Rea) said that at least 40% of VN sufferers will develop migraine also (such joy, not!).  Like Chris (who I have also communicated with) I have a borderline thyroid problem and have wondered if this is the cause of a lot of my ongoing problems.  I feel as though I have improved very slightly but sometimes think it may be that I have adjusted and become more tolerant of it?

I also get very fruistrated that in this day and age they have not found a cure/solution to this type of illness.  When I heard about people with Lab's or menieres etc I never thought much of it as I always assumed they were given pills and hey presto cured but now we all know differently.

Anyway, I will keep up my fight against this awful condition and hopefully in a few months time we will all feel a lot better!?

All the best

Laurence

Hi Laurence, sorry to hear you are still suffering. You may have read I am now seeing an endocrinologist so I will update just after Christmas when the 14 phials of blood he took have been processed...he wasn't convinced it was thyroid related but he did say he may try me on synthroid as it wouldn't do any harm but I'd know pretty quickly if I didn't need it. Kind regards Chris

Hi Chris,

It will be interesting to hear what the endocrinologist has to say.  I am seeing my GP again next week and will also ask to be referred to an Endo.  My TSH result in October was back up at 7 so they took another blood sample 3 weeks ago and it was back down to 5.2.  This is how it keeps going, like a bouncing bomb!!

If my GP won't send me via the NHS I will ask to go private.

Anyway best of luck, let me kinow how you get on.

cheers

Laurence

I'll will let you know - I am seeing him on the 29th. Fortunately I am private through the wifes work scheme I cant imagine the stress trying to get referrals otherwise. I have cut the GP out of the loop as they were not particularly understanding. The consultants now just refer me on. The endo was finally one who had actually read my notes before, spoken to the previous consultants and had looked at my previous bloods and mri's. And he actually listened to me. As they all should at £450 per hour!

​My last TSH was 6 ish so he stll thought too low to do anything but he did concede an average is an average and some people just work different. He was very good. For a change.

Chris

​

 

Hi Chris,

Thought I would give you an update on my thyroid issues.  I went to my GP yesterday and although he is still reluctant to send me to an endocrinologist he has agreed to carry out further tests.  I have to have blood taken to check TPOA (protein Antibodies) and also Thyroglobulin Serum.  I have also got to go for a scan on my thyroid.  he said that if he sent me to an endo the wait is extremely long, if these tests show something then it would be some other specilast and not an Endo I would need to see.  

Do you have many iof the symptoms of thyroid, I can tick off loads and definitely feel this is the reason why I am still so off balance.  My sleep pattern is awful so hence I feel very lightheaded most days.  Poor sleep is one of the symptoms of Hypothryroid along with numerous others.  I still get the tingling in my legs and around my head. It would be ironic if this was the cause of my problems all along, but I do still beleive that I have VN but this is being aggravated by something else (thyroid).

Anyway, let me know how you get on following your appointment on the 29th and I will let you know the outcome of my tests.

Best wishes and Merry Christmas

Laurence

Hi Laurence,

I'm pleased you made some progress with the GP, lets hope something shows which is treatable and not just borderline again which they will just ignore. I think I said my endo is happy to trial me on a hormone dose even if I come back sub clinical again. As he said it won't do any harm and I'll know soon enough if I need it or not.(no sleep, palpitations, weight loss, basically hyperthyroid!)

​Yes, I have a good number of the hypo symptoms but as you know they cross over to a number of other conditions, mostly neurological and the odd disease like Lyme. It's one of the problems when you're not overtly hypo but just register a few "mild" symptoms. One annoying one I've noticed aside dizzy, tingling legs and headband is weight gain. Around 8 pounds even with an upping of exercise and being even more careful with diet etc...

I definitely feel better after a good sleep - I bought a fitness tracker a while back ( I cycle when I can, bit geeky but interesting data) which also records sleeps patterns. When I have a crap day it correlates with a poor restless sleep even if I happen to think I slept well the tracker then shows not. Not sure how that helps me but makes sense!

I hope you're well over the Christmas period and I'll be sure to post the results and endo's comments after I see him.

Best wishes and Happy Christmas to you too (and all fellow sufferers)

Chris   

Hi Chris,

Yes sleep does play a major role in how I feel.  My sleep has been very poor this past 2 months especially, this also affects my mood.  Unlike you I have not gained weight but that said the weight I initially lost due to the VN (probably anxiety) has all come back on but I still have most of the symptoms (majority of which relate to thyroid).  

I did buy myself a Fitbit from a well known on line company as I also wanted to see how much sleep i am getting, unfortunatley when I logged it onto Fitbit website the Fitbit flex turned out to be counterfiet.  I contacted the company and eventually got my money back, I think the company selling through them have been removed.  I am now hoping the wife has got me one for Christmas.

I would love to go for the occasional bike ride but my physio is against this as he is worred incase I fall off.  The thing is I cope better cycling than I do walking whilst still feeling off blanace/dizzy.  Most of my exercises come through gardening (and housework), I have been clearing leaves regularly for the past 3 weeks, spent two hours finishing this yesterday and my head was rocking quite a bit.

Anyway, a Happy Christmas to you and all fellow Vn sufferers, at least we can genuinely say we will be 'rocking around that Chrismas tree'

Cheers

Laurence

Mine is a Fitbit too, it's really quite good. I bought it to track rides and heart rate. I'm not that geeky about it but for general exercise etc its really quite good and the dashboard on the phone or laptop gives a good lot of data. I took a risk and bought a Surge on ebay for about £100, half the shop price I think!  

The spinal guy wasn't happy about me cycling but its the only way I stay sane. It does help my balance and dizzyness and fortunately I'm very rural so the only danger is old folk in their Nissan Micras on the way to the Post Office.

I gave up on the leaf sweeping....looking down and raking made me quite ill!

Take care and no falling into the tree....

Hi Chris,

I think you need to re-read Manda's comments.  She has been seeing improvement after having adjustments and massage therapy to her neck.  I went to see a chiropractor on Fri. and then again yesterday to go over my X-Rays.   I told him about Manda's comments, and told him that I think I am dealing with the same mis-alignment.  Well, he said that I am, and maybe even to a greater extent.  He said that the curvature of my neck was not only flattened out, but was also slightly curving in the opposing direction and that the axis of my head over my neck was off.  He said that pinched nerves from the misalignment could be causing all of the dizziness and tinnitus that I experience.   I had an adjustment and session with a massage therapist, and will return tomorrow for another.  I think that you should try exploring that avenue, because I also told him that when I look down I really feel like I could fall on my face sometimes, and I noticed you mentioning that as well.  My dilemma now is whether or not my insurance company will pay for any of these treatments, so that is next on the "figure out list."  Chiropractors will have you seeing them for months - or literally forever - so finding an ethical one can be tricky.  I'm not sure that I have found that person yet, but have again been convinced that my neck is causing me all or most of this grief!

Merry Christmas to all!!!

Nanci, I am so glad you got an x ray because from what my chiropractor and the doctor at the medical massage clinic told me, it's really bad when your curve goes in reverse (which is a confusing term but basically means so straight it's over the balance point) and that I was very lucky I hadn't gotten to that point yet.

I agree that even with treatment I have to be most careful with looking down and even looking up but that I can now look all the way left and all the way right without issues. Before October I was having a huge aversion to my right periphial, both when driving and when walking. I would also get dizzy most walking or sitting down or changing speeds which was very disconcerting, though those aren't the only times I get dizzy. I would get these terrible migraines with auras/lightning flashes in my vision making it very difficult to focus my vision and regain my sense of balance.

Since October I can honestly say that despite a very busy, physical work schedule I haven't had the vision problems in several months, I haven't had dizziness triggered by looking to the left or right or an adversion to my right periphial (though it's still really strong from up and down, especially if it's sudden) and it may sound weird but I can almost sense a migraine or overwhelming dizzy spell coming and refocus my vision for a few seconds to ward it off until I can stabalize myself.

Started the aggressive treatment plan this week which includes homework like laying on a table or the floor with my C7 on a triangle block and my head free hanging backwards for a minute at a time and of course doing turtle tucks and pec stretches and attempting to avoid too much forward head motion at a time.

Nanci, I wish you luck. Due to the my insurance only covering about 25 appointments before the cost triples on the chiropractic appointments but not having limits on the medical massage I have the massage therapist focusing on the occipitals to make the adjustments the most beneficial as well as doing my part of doing the physical therapy on my own to maximize the benefit and get the bang for my buck. I bet if you went full force on the adjustments 2 or 3 times a week for a month or two you could probably taper off to once a week and still continue to get use out of extending your benefits to last longer.

I hope to hear that you are making progress soon! Merry Christmas!

Thank you Manda!  I don't know if I ever mentioned that my late husband (his birthday is actually today) was an Osteopath.  He was one of the very few doctors I have ever known that knew exactly where pain or dizziness was coming from, and also was able to take care of the problem.  I think over the years he kept me from ever getting to the point I am at now.  Unfortunately, I haven't been able to find someone like him, as many doctors no  longer do adjustments/therapy because of having a difficult time getting reimbursed by the insurance companies.  Thus, seeing a chiropractor is who to see. 

I told the chiro yesterday that even using my electric toothbrush sometimes makes me dizzy - any vibration seems to.  Flashing lights, or watching cars speeding by while I'm at a light also makes me dizzy.  I too have migraines with aura - actually have had them since in my late 20's, which is decades ago...........

Anyway, I need to contact my insurance company and see what they will or will not cover, because yesterday, I was asked if I would like to "pay the $1,000+ upfront for a 10% discount or pay as I go!"  I need to find out what is allowed per my insurance.  I think the help you're getting sounds spot on, but also think that you are knowlegeable enough by now to know if something isn't right.  Isn't it just amazing how terrible you can feel with an alignment problem?

Thank you again for relaying your experiences and I'm so happy to hear that you are feeling better!

Hi Laurence,

​I saw the endo yesterday and all my blood tests were ok aside the TSH which clocked in at 6.5 so a fair bit higher. He said I definitely wasn't hypothyroid but is putting me on 25mg of thyroxine I think just to see if it makes any difference. My free T3 etc were all ok so he wasn't unduly concerned.

​He's sent me back to the neuro to re-assess the cord symptoms....and on we go !!

I'll let you know if the pills make a difference...it'll be two weeks or so before I get them though or some reason..

Cheers

Chris

Hi Chris,

Did the Endo say why your TSH is higher than the normal range.  I seem to have the same issues as you in this regard in that my TSH levels go up and down.  Over the four years of monitoring it has been up to 8.9 but as low as 5.1, the last two readings were 7 then back down to 5.1.  My GP doesn’t think I have a thyroid problem but why does my levels keep going up and down?   Obviously I hope to find out more after having further bloods taken tomorrow and then the scan on the 16th Jan.

How is your dizziness now? I still feel dizzy (well off balance) 24/7, this hasn’t changed in the 12 months of getting VN.  I still feel like I want to walk over to the left or have a bobbing type of sensation when walking.  I prefer not to go for long walks as I find it very hard, I get on much better cycling so will make this my new year’s resolution to cycle more.

My wife got me a Vivofit for Xmas so I can now see how much sleep I am getting.  I am getting more than I thought and average around 7.5 hours per night (made up of deep and light sleep).  I can now see how many steps I am doing just pottering around the house and it is around 4.5K (around 2 miles).

Anyway, a few questions; can I ask what Cord is?  Are you able to tolerate alcohol? Do you get a stiff neck and pins and needles still?

Hope you had a good Xmas.

Cheers

Laurence

Hi Laurence,

​He suggested that it could be early stage Hashimotos disease, but was adamant I wasn't hypo. He agreed sub clinical and was aware that there is no conscensus on treating it as so many are free of obvious symptoms. Though when tested highish cholesterol is common.

He didnt explain the variance but I guess the body requires different amounts at different times? Sorry I didnt think of that question...

​The dizziness is ever present but today I feel ok as I slept 9 hours, I have no idea on this now. The endo said I definitely didnt have VN and wasn't sure why ENT would say so when my audiology study was so "normal".  

​The cord thing I referred to was from a couple of cervical spine MRI's I had. There was an "artefact" showing in my spinal cord. The neuro and a couple of radiographers decided it was not of any significance though I have a physical symptom known as "l'hermittes sign", common in MS but also other things which complicates it for me as I'm still not sure why they dismiss it when I have a clear physical symptom. I guess from the other tests he did which don't suggest a neurological disorder...

​Alcohol is ok but certainly not what I used to do, I just don't want a hangover compounded with the ongoing rough feeling..pins and needles is daily but does let up on occasion, could be anything, if the consultants have no idea I guess I will have to get re-assurance from the neuro and see if the thyroid tablets help.

​Oh, cycling is a definite benefit for me. It clears my head, keeps the weight down and gets me out...get that bike out!

Cheers

Chris  

  

Laurence, have a read of this on subclinical hypothyroidism, it argues the case for treatment...

http://press.endocrine.org/doi/full/10.1210/jcem.86.10.7959

Hi Chris,

Thanks for the info.  I went onto the patient forum for thyroid a while back and a lady who is a nurse in the USA told me that I could have hashimoto's as the level of TSH going up and down is typical of this type of thyroid condition.  When I looked this up it states that this eventually becomes Hypothyroidism.

So you have been told you don't have Vn but no one can say for sure what is causing your dizziness?  I sometimes question my diagnosis but as I have seen one of the top consultants in the country for this I must trust his diagnosis, perhaps something will come up following my tests on the thyroid and this may answer some of my questions as to why I don't feel like I have improved in the 12 months since getting ill?  My thyroid could be exacerbating my VN?

Like you the more sleep I get the less dizzy I tend to feel but it is always there to some degree.

I will get my bicycle wheels pumped up and go out on the road around our village over the next few days.

I will let you know how my tests go.

Cheers

Laurence

Hi Chris,

Yes that was a very interesting read.  I see it also mentions the affect it can have on cardio.  On about 4 occasions over the past 4 years (since first being told my TSH was raised) I have nearly passed out, this happened 3 times at work and once whilst swimming in deep water in Cyprus (very scary).  I have always wondered if this had anything to do with my thyroid and have tried also linking this to how I feel now.  I have had a lot of light-headedness over the past 4 years also and thought for a long time it was to do with my bed headboard as it was always worse when sitting up in bed, we changed the headboard but I still felt the same.  Again I have mentioned all this to my GP and consultant but it falls on deaf ears.  Neither of them knows what triggered my VN as I didn't have a virus at the time this is why I have always questioned the diagnosis.  I did have an ulcer on my eye about 6 weeks prior to getting dizzy but my GP told me this was an unlikely cause as it is rare for anything to spread from the eye to the rest of the body as the eye is self contained.

Anyway, I will continue to do my physio assuming that I do have VN and hope it will get better but I will also continue to pursue the issue of thyroid and if like the article says my thyroid condition gets worse they will then have to give me (and you) medication to treat it.

Cheers for the info.

Laurence

It's been so insane at work that I haven't even checked my email or done anything online in nearly two weeks but I wanted to drop by and ask what your insurance said it would cover and if you have started treatment.

Hello Manda!  Insane at my house too, since I have company, including 3 little ones............

Anyway, my insurance (Blue Cross Blue Shield of Az) told me that the guy I had started seeing, including the clinic, was not in my network.  That would have me paying $85/time to be seen, including the chiropractor and physical therapist asst.  I would have to find a different in-network provider, and then my co-pays would be $50/appt.  Still alot of $$$, considering this guy wanted to see me "as often as possible" for awhile. 

I am also concerned that his treatment - even though I told him to not do any "cracking" of my neck, may be aggravating things.  Since I saw him, I had more tingling/electricity down my arms to my hands, and even felt some cramps in my calves that I hadn't had before.  After the holidays, and when I have some time to myself, I am going to contact the neurologist office and ask about the findings from my latest MRI on my neck.  I am concerned the stenosis has progressed.  I realize that i didn't get to this point overnight, nor will I improve overnight, but it is scary to think that something you have doneon yourself could make things worse.

I hope that you are feeling better and continuing to improve.

Happy New Year to you and everyone reading this!

Hi.....I have seen a chiropracter for many years...Have no bad storeies  but look it up they say its not good for them to mess with your neck.....Monday I am going to find out about my mri of the top part of spine/neck.....have 3 doctor appts next week.....so sick of this .....Anyway...Happy and hopefully it will be a healthy New Year for all of us who are suffering with this......................

Hello Rita.  I'm happy to hear that you have no bad experiences with the chiropractor.  I saw one around 5 years ago that I am sure caused some damage to my neck.  That is why this time around, I have made it clear what can and cannot be done.  He and I discussed the gentle stretching, while working on the back of my neck/shoulders etc.  It's scary for sure to think that seeing the wrong person can damage you permanently.  My goal - as I'm sure is everyone else's, is to not wind up on an operating table.  As I mentioned once before, my late husband was an Osteopath, and his adjustments always put me back to feeling well - no more pain, and no dizziness etc.  I think over the years, things just progressed to where I am now.  Like so many others, I went through all the vestibular tests, ENTs, opthamologists, etc. with no one having an answer to why I have been dizzy and living with tinnitus.  I pin it all on my neck, because on days when my neck is really tight/sore, everything else is exacerbated. 

Hope your MRI is favorable.  My last one showed 3 bulging cervical discs and minor stenosis.  At that, some doctors would rush you to surgery.  Others would try more conservative therapies, such as the treatment you have been getting with your chiropractor. 

I wish you the best!

Hi Laurence,

I was reading another article about an annoying foot ache I have called plantar fasciitus.

Irrelevant I thought to hypothyroid? Nope.

Apparently it is a common symptom. I never knew that...more ammo to throw at the GP!

It would be interesting to see if anyone else on this thread has developed this?

Cheers, Chris

Hi Chris,

I have never suffered foot ache but what I do get frequently are cramps in both my feet, this I am led to believe is also a sign of thyroid issues.  

I have been suffering with a bad head cold/cough since New Years Eve (great start to the New Year!!), this has made me feel more dizzy/lightheaded  than ususal, viruses are not good to VN sufferers. I only got around 5 hours sleep last night due to this annoying cold.  If you don't have VN what did they eventually diagnose as your main problem causing the dizziness? Or do you think it is the thyroid issue causing most of your problems?  I had my blood tests for thyroid on the 31st Dec so will probably get the results tomorrow, I will let you know what they say.

Cheers

Laurence

Hi Laurence,

I don't believe I ever had VN and nor does the neuro or endo. The ENT did however even though I passed as normal on all the audio and balance tests... I think he was trying to save face after I insisted on mri's which then showed my neck issues!

I have no idea if it is thyroid although all circumstantial evidence points to it even though my free t3 and t4 levels are ok and my t3 and t3 are low normal with the tsh at 6.5. I read so much of people being ill then treated at these levels and recovering I think it's worth a shot on the drug which I will get next week.

If it's not thyroid it could have been a mild transverse mylelitis as I have that white matter showing in my spinal cord or it could be ms but the neuro is sure it's not.

Hopefully the lesser of the evils!

Sorry about your cold, I had a mild one over xmas so sympathise, it does aggravate things

Chris

Hi Laurence,

I meant to ask, did you ever mention your thyroid antibody results? Was hashimotos ever mentioned? And do you ever get muscle twitching? Thighs? We may have covered this but I have trouble tracking these threads on the phone!

Just sitting here mulling twitches and starting the thyroid tabs in a week!

Cheers

Chris

Hi Chris,

Just got my TSH reulst back (although this was taken far too soon afterr the last test in early December as my Doc tells me they should be 3 months apart) and this was at 4.12, the lowest I have known it for the last 4 years!!  I understand though that this is typical of Hashimoto's withy the level going up and down.  The antibody result has not come back yet, I will let you know what that is when I get it.

Cheers

Laurence

Hi Laurence, so I go to the GP tomorrow to get the prescription for my thyroid drugs...which means free prescriptions for life apparently!

That aside I meant to ask you. Does your fitness tracker monitor heartrate? Another symptom of hypo is low heartrate. I've had my fitbit since June and maybe I'm getting fitter but my resting HR has fallen from low 70s to high 50s...coincidence that my tsh has been rising? Probably to esoteric for the Dr but interesting anyway.

Cheers, chris

Hi Chris,

Yes I understand that once you are given drugs for thyroid all future precsriptions, regardless what they are for, are free.

My heartrate is always around the low 70's sometimes high 60's (68-74).  What is low most of the time is my body temperature.  This ranges from about 35.4 to 36 but most of the time it stays around 35.8.  Even whilst having this cold (which is still hanging on after 12 days) my temperature only went up to 36.4.

How is your dizziness now?  Are you dizzy every day and how do you cope with it whilst exercising?  Do you do any other excercise beside cycling?  i always used to do 40 press-ups per day before getting dizzy, I still do some but only every other day as doing them makes my neck stiff and in turn makes me feel dizzier.  I do plan on getting out on my bike soon but my dizziness has been worse lately due to the cold I am suffetring with.  That said i generally feel more lightheaded now days ratrher than actually dizzy.  The lightheadedness makes me feel like I am about to pass out (but never do), not sure if this is the VN or something else?

I go for a scan on my thyroid on Thursday.  All my blood tests came back within the normal range this time, but like I said one moment the result shows my TSH is slightly up and then it is back within nomral again.  I occasionally go onto the patient forum for thyroid and a nurse from the USA stated that this is typical of Hashimoto's, but then I think I already said that in an earlier post.

Good luck on the meds, let me know how you get on and whether you feel any imrpovment in your overall wellbeing.

Cheers

Laurence

Hi Laurence,

My dizziness has retreated quite a bit these past few months as I touchwood typing this. I'm hoping that it's a good sign and that it's the cycling and general fresh air that's helped. I don't really do much else aside some walking but the foot pain has kicked that into touch really.

I'm a bit hesitant on saying bye to the head stuff as this has happened before and it came back with a vengeance so I'm taking each day as a blessing.

My GP was against me going on thyroxine. She showed me the endo report and in her defence it was a bit wishy washy in its recommendations. She basically said if I went on it I'd never come off and as I was marginal it was better to keep monitoring it.

Other things such as side effects and I was talked out if it though she did say I could try if I wanted at any time.

My choice so I'll see how it progresses. If the neurologist at the end of Jan again says all clear I may reconsider....

Hope your cold clears soon.

Chris

Hi Chris,

Did you have to do all the head excercises and if so did you feel they helped with the dizziness.  I have been doing the head things for 6 months and don't feel any improvment what so ever.  I also do lots of other stuff e.g all the housework, gardening etc so I am always moving and have never kept my head still as others do.  Do you feel that it was the cycling and fresh air that helped with your dizziness?  All my physio wants me to do is go for walks but this never helped in the past and in fact made me worse.  he was concerned abouit me cycling so hence I have not done this but when I did try everthing was fine.  I find the faster I do things the easier it is for me.  If a dawdle i feel dizzier.  I showed my wife by running up and down on the spot and I felt pretty okay, I then tried running and this was not too bad either but when I walk I tend to wobble around and want to veer over to the left, all very strange!!.

Glad that your dizzies have at least subsided.

Cheers

Laurence

Hi, yes I did all that nonsense. I did roughly 250,000 neck moements over a 2 or 3 month period that I stopped as soon as my neck MRI showed a possible spinal cord lesion and severe stenosis over 3 or 4 vertebrae. I am convinved this has aggravated things but what do I know...I know the head exercises didnt help but then I think I was wrongly diagnosed with vestibular neuritus anyway!

​I definitely felt better after exercise but not sure whether it was just the getting out of the house that did it.