Hi again was diagnosed with VN with possible MAV in March 2015 and have progressed very very slowly, Life was liveable but not always great as still woke up in mornings with what can only be described as a hangover feeling which subsided as the day went on.
Suffered frim what can be described as a feeling of a tight band running from my forhead across my head to the base of my neck but i just tried ti ignore it, however in the last few weeks i have stiff neck tingling nose and a head that feels totally full .........its like i have gone back 8 months and now im wondering if i have a problem in my neck as its always worse in the mornings any body else struggle in the mornings with this?
Hello Steve,
As I have mentioned in the past, I do believe that my neck contributes to or even is the cause of my dizziness issues. When my neck gets particularly tight, I experience tinnitus, and a terrible "spacey" feeling. One of the doctors I've seen prescribed Valium to use at bedtime as a muscle relaxant. I do think that helps somewhat. Other nights, I'll try an Advil PM, but find waking up the next morning I feel groggy and "off." As you mentioned, that feeling subsides as the day goes on. Those muscles that run from the base of your skull around to the front of your neck can get really tight and painful. The next time I see the neurologist, I am planning on asking him about trying Botox on those spots.
Try to remain as calm as you can through all this stuff, because getting uptight only tightens you up more. Hope better days are ahead for you.
Hi Steve
Wow - "hangover feeling and a tight band running from your forehead across your head, full head, tingling". Is it like wearing a hat? Except you're not?
EXACTLY my symptoms since February this year plus a bit of leg and hand tingling. I was diagnosed with VN and did all the exercises, progressing slowly, then back two steps...and on it goes. I've had head and neck MRI's, cord compression MRI, bloods, neuro exams, Spine consultant, ENT and now endocrinologist ooking at bloods again and lyme disease and autoimmune diseases ...
However , in my neck I have wear and tear and some disk compression/stenosis in the ferominal area, though spine guy says it wouldnt cause my symptoms. I also had "white matter" signal in the MRI that the neuro said was nothing as I passed the neuro physical.
I am sure my neck is involved somehow but I have to go with the MRI's and very experienced consultants.
I feel crap every day, with that hangover and headband....I'm sorry to hear your story but its interesting you describe pretty much the same thing....what else have they said to you? My bloods are ok aside slightly off on thyoid and b12 a bit low...
Steve, I would suggest getting an x ray from a chiropractor. I am not suggesting you get adjustments done but you can do a consult where they take an x ray of your neck and give their diagnosis, you don't have to get work done on you unless you are comfortable with it. I've stated this on multiple threads but after almost a year of 6 specialists, countless tests and medications, a chiropractor discovered my problem and the kicker was that it showed up on the MRIs, etc but that's not what neurologists look for.
I didn't have any dizziness before all of this started and then all of a sudden I had constant dizzy spells and migraines throughout the day, every day. It turns out that loss of curvature in my neck was causing my C1/Atlas to put a lot of pressure on my brain stem which in turn put a lot of pressure on my cerebellum which controls balance and motor skills. This was also causing a reduced flow to my occipital lobe which is where a majority of my migraines stemmed from.
I'm not done with treatment which is a combination of medical massage, physical therapy and chiropractic adjustments (my understanding is you can fix some of it without the adjustments at all if you are not comfortable with a chiropractor, I consulted for almost a month before I let them adjust me and it's very important you choose a good one carefully) but I am taking zero medication now which was wreaking havoc on my system before.
Hello Chris,
I think we've spoken before. Anyway, yes, I agree with the neck involvement, but also wanted to mention that the "white matter" you were informed of is common for people who experience migraine headaches. I was told the same - areas of tiny white spots, that are in and off themselves harmless. (?) I have had the same tests as you, and been told pretty much the same things. The hand/leg tingling is probably due to the stenosis - another issue that I have. I do question the bloodflow being obstructed causing dizziness, and feel that a neurologist should be able to pinpoint that further? Maybe someday this will all make sense - hope so.
Just read your response Manda, and think you have been given some good advice. I really believe most all of us are suffering from a "mechanical" issue, and not a chemical one. Finding that chiropractor or Osteopath that can take care of this is the problem. It all seems to be so common-sensical, but where are those practitioners?
Hi Nanci, yes I'm sorry I forget names on here! My neck MRI's had a patchy high T2 signal which the radiographer said was genuine though the neuro and another radiographer decided were "artefactual", ie not really there or irrelevent. Obviously Ms crops up but I have no other symptoms aside l'hermittes sign which is possibly a mechanical result of the wear and tear. I've thought of the blood flow issue but have had no real response when asking the question. I've never had migraines or any head issues but I guess its a wide term and applies to those that can start as a result of neck issues....ps the white matter was in the spinal cord at C3/4, my brain was clear. Feel ok today...just for a change!
Yes, prior to all of this I was being referred from one specialist to another. I found the chiropractor and the massage thereapist through following up on a gut instinct and truly trying everything. It was during a phone call that I got a good feeling about one of them and decided a free consult couldn't hurt. A doctor never would have sent me down that path. If you cannot find a chiropractor in your area then I would suggest x rays at the hospital but if you find a chiropractor then they usually know the medical massage places, etc. to refer you if you aren't comfortable with adjustments.
hi Chris i only had 1 appointment with nuero otologist then was sent for VRT ive had MRI at the start of this and was all clear and bloods came back wiv low vit D so on supplements now.
my GP is pretty much useless i tell him what i thinks wrong as he aint interested.
some days ive felt really good other not good but this last week has been real backward step its soul destroying.......i wouldnt care if there was light at the end of the tunnel but it all seems so bleak at the moment
Hi yea ive asked my doctor for xray and he has agreed to this i hope they find something and a chiropractor can sort me out
its alway at its worse after i sleep the longer i sleep the more it flares up
yea im thinking the same about auto immune disease and sometimes symptoms can vary from mimute to minute quiet bizzare really!!
All started with a room spinning attack of BPPV in Oct 2014
just amazes me there is no solution to this crap!!
That's great! Let us know what the xray shows!
Obviously there's no way I could really know, but my gut on most of us on this thread is that we are probably dealing with something similar, and I think that's more in line with what Manda described. Auto immune issues aren't that likely, and Vit. D deficiencies are common if you live in low sun areas. The common complaints seem to be the same - neck problems and dizziness. Way too many of us spend long hours looking down at computers and cellphones - both damaging to your neck. Finding the right chiropractor or Osteopath isn't easy. I allowed one chiropractor to crack my neck 5 years ago, and was later found to have a tear in a disc during an MRI. I had never been in any accident that could have caused that, so it was obvious what had happened. Anyway, I appreciate the input from all of you that take the time to suggest solutions and wish everyone the best.
Hi Steve......please update on what was done...like tests...blood work etc
Hi Manda
are you now dizzy free or still having problems but much reduced? I took think my neck may be the cause as i already know i have a neck problem and think it is possible that it could be causing restricted blood flow.
Hope you get back to normal. Best wishes Anne.
So why are my symptons worse in the mornings ?
anybody else feel worse then .................its not like i take medication before i go to bed
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