Head Rush/Swimming, Strange Pressure/Floaty Feeling In Neck, Pulling Behind Left Eye, Headaches

Brain and nerves
1

Okay, I really don't know where to start this. I don't know if I should post this here, or in multiple boards, seeing as I'm not sure what in the hell is wrong with me. A few things first though: 

1. Diagnosed with Chari Malformation Type 1 when I was 10 years old. This found while an MRI was performed on my spine. 

2. Diagnosed with Scoliosis before Chiari was found. My spine started to curve when I hit puberty. 

I don't EVER remember having symptoms from my chari, well, except the curving spine. They decided to operate on me anyways. I had a dural placed in along with a slight shaving of my skull, at least this is what I remember. I was young and my mother, having suffered an aneurysm when I was 13, she can't remember much of my surgery's either. 

After my Chiari surgery, I had no issues. I was slower atheletically, but that's it. My spine didn't stop curving after the Chiari surgery, so I had scoliosis surgery...I had harrington rods placed in. 

This was 17 years ago. 

In all of these 17 years I have NEVER had issues with my Chiari. A headache here, a headache there...but that's about it. Oh, and the occasional bad gag reflex. I was a cheerleader, worked out, basically jumped around my whole life. Traveled a lot, partied a lot, I mean...I was doing a LOT! No problems!

Last year, after I moved to France, I started feeling...odd...shaking, headaches, etc. Well, I decided to quit smoking too (10 years heavy smoking), and that was ROUGH! But I managed! Yay!!! I was quite stressed though last year. First year of marriage, living in a foreign country, learning a totally new language. Not to mention the fact that I was living in Paris during the terrorists attacks...so, I was a bit on edge for awhile whenever I would ride the metro or be in large public places. I've noticed a few symptoms really started in January, first being a weird heart beat, then a lot of headaches, and now a weird dizziness EVERYDAY. But it wasn't until 2 months ago, when I started exercising again, that they seemed to came out of nowhere, especially the dizziness. I do NOT have vertigo. Things aren't visually spinning, nor is my head, but I FEEL dizzy in my head. It seems to radiate from the back of my head to the top. It's like when you squat down for awhile, then stand back up and you get that head rush/dizziness. I also have this VERY strange sensation at the back on my neck, in the middle between my shoulders and base of my skull. It's like a heavy pressure, but also feels a pulling sensation. When I get the headrush, I get the weird pressure and pulling sensation at the back of my neck.

Now, how many times do I get the head rush? ALL. DAY. LONG. I'm not joking. It comes in waves when I'm standing, and when I move my eyes to look around BAM! Or when I barely move my head, BAM! Typically when I look down it starts too. I even feel it when I sit, and sometimes when I'm lying down. And it definitely happens when I'm walking. There is this weird jolting through my upper back and neck. Wanna know the funny thing?...If I hold my head in my hands, wear headphones, put my hair up in a ponytail, drink a little bit of wine, or even when I'm brushing my teeth or hair ... this sensation seems to be muted. I still feel it a little, but not as much. That's REALLY weird. I know it sounds strange, but this is the truth. 

Another strange symptom is a weird pulling behind my left eye. It's like a pulling, and then it goes down into my nose...like the sensation where you're going to sneeze? Kind of like that but not so harsh. 

Since January, I have also noticed a weird skipping in my heart. It feels like my heart wants to jump out of my chest or struggles to beat properly. It does it at times that make absolutely no sense. Like today, I bent over to grab my purse and it happended for a second. Or when I lean over to get stuff out of fridge. Sometimes while lying down too. This seems to be more frequent. 

As for headaches, they seem to be slowing down but I still get them every other day. 

So, here are my symptoms in full: 

- Headaches, accompanied by a sharp stabbing pain at the top left side of my head. 

-Pulling sensation behind eye, which spreads through my cheek bone and down to my nose. Happens more when I'm more active.

- CONSTANT head rushes/swimming feeling at the back and top of head. This happens when I'm just standing there, moving my eyes around, when I'm sitting, sometimes when lying down. DEFINITELY when I'm walking around. I can feel my footsteps vibrating up to my neck and then a head rush/swimming/dizziness starts. Sensation is muted/dull when holding head in hands, or leaning head into palm. When wearing headphones, have my hair in a ponytail, brushing hair or teeth or when a little tipsy from wine. Sometimes even touching my head makes the head rushes stop for a moment. I kind of feel like I'm glitching at times too

- Weird heart palpitations/jumping. Happens very randomly, heart feels like it's about to jump out of my chest and feels like it's struggling.

- Pain at the top of back, in between shoulder blades. Really annoying. 

- Sometimes I have some pain in legs or hands...

- Feels well in the mornings but after 30 minutes to an hour, symptoms start.

I am 40 pounds overweight (because I quit smoking) and I know this is bad for my harrington rods; I try to stay away from gluten, I WAS stressed a lot for a few years (during uni and dealing with a long distance relationship) but not again until recently when these symptoms became horrible. I'm scared. I'm upset...and my poor husband doesn't know what to do. We moved from Paris to a smaller city in the West of France, and well...things just became so crappy now. I'm so upset...I don't know if this is my chiari or if there is something else going on. I want my life back!!! 

I have had an MRI of my brain, and the doctor said he saw nothing...then again he wasn't a neurosurgeon. He said everything seemed fine with the rest of brain...so now I have been scheduled to see an ENT, have an X-ray on my spine, and to get a blood test for diabetes, thyroid, etc. 

Does anyone EVER feel these symptoms...? Anyone? 

2

I also forgot to mention that when my heartrate rises, I hear and feel my heart beat in the back on my head...

3

I was diagnosed with chiari September 2015 haven't even got appointment yet to see neurosurgeon but your symptoms are practically identical to mine I just assume they are chiari related pulling behind eye I mentioned to my gp but he has no experience of chiari so am pretty much in limbo. I too feel fine in morning but as day wears on I get worse eventually I have to go to bed after dinner in evening or I would just collapse hope you get answers soon xx

4

Hi there, its look like your chiari playing about again (that is only I learned by reading from other members) sometime some people have their chiari symtom back again - as symptom seems just like chiari..perhaps you should ask your doctor to refer you to neurologist then neurosurgeon, doctor have not got a clue about chiari...so for your well being do it fast, take it easy..you should not l.ift anything more than 2 kgs ---

5

Hi there. Just wondering if your issues ever were solved. I suffer from same symptoms. I have a hard time describing them but they are exactly as you said. I appreciate any feedback and I hope you are well

6

Hi Christine, I'm sorry to hear that you've been suffering the same symptoms that 'enfrance' has described. I've been having symptoms that are almost identical to those described with no sign of a diagnosis yet, having only discussed it with my GP, although I'm seeing an ENT consultant in a couple of days in the hope of some enlightenment!

I hope you're feeling better, and would really appreciate it if you could say whether you've managed to get any insight into possible causes of your symptoms.

Thanks in anticipation,

Brian

7

Hi enfrance, given that it's two years since you posted this discussion thread I'm not sure whether you'll pick up this response, but if you do I'd be really grateful if you could let me know how you're doing now. 

I've been suffering for just over 12 months with dizziness and related symptoms which match yours almost exactly, and although I've searched extensively on the internet, yours is the only thread I've ever come across which matches my own experience, right down to the pulling sensation behind my eye!

I've seen ENT and Neuro consultants, and have had a full complement of tests, but as yet no one has been able to diagnose my symptoms, which are steadily becoming more intense.

I do hope your symptoms are resolved now, but it would be great to hear whether you have any more idea what caused them.

Thanks in anticipation! 

8

Hi there... unfortunately I have yet to come to a diagnose. I pretty much have given up and accepted the symptoms.  Some days are harder than others.  But I do notice that when I worry about them they get worse. I had it for going on for 3 years now and now have further symptoms like neck and upper back pain. I’ve been told on numerous occasions that it is anxiety .... but I can’t accept this diagnose. I’m sorry that you too suffer.  Is there anything that make your symptoms better?   

9

Also... just talking to someone with the same issues seems to help.  Are you on any medications?   I feel like my emotions are pent up but I can’t releases them ... like by crying. But if I can do this it helps with the symptoms sometimes.  Maybe it is stress or anxiety. Idk. 

10

Hi there, and thanks for responding. I'm in the same position as you at the moment in that I still don't have a definite diagnosis.

Just to confirm, I've experienced what appears to be exactly the same dizziness symptom as enfrance for the last 13 months. For me it began as something that was barely noticeable but has grown steadily in ferocity over time, so that now the 'head rush' symptom is felt whenever I move around or my head, and I also frequently experience a 'head swim' sensation when I'm sitting or standing still. Once I lie down the sensations gradually subside and if I'm lucky, I will wake up after a night's sleep and the inside of my head will be still, but within a minute or so of rising I begin to experience the dizziness again. I also need to confirm that these sensations don't make me feel unbalanced or that I may fall. I also have frequent headaches and neck ache, and when symptoms are particularly fierce they are accompanied by feelings of nausea. 

I've just re-read enfrances description of her 'headrush' symptoms and I have to say she has described my symptoms uncannily accurately. 

I'm in the U.K and I've now seen 4 ENT consultants and 2 neurologists, as well as a stroke consultant. Because of the nature of my symptoms, work towards a diagnosis has been done by ruling out possibilities one at a time. So, I've had C.T and MRI contrast scans to rule out brain tumors, lesions and circulatory deficiencies, and I've had hearing and caloric tests on my ears to investigate vestibular function.

So far the only indication that there may be an inner ear problem has come from a high resolution C.T scan which suggested a possible semi-circular canal dehiscence. (you could google it) I'm having a VEMP test tomorrow morning to support the findings but to be honest my symptoms don't match those of a SSCD so I don't think they'll find anything significant.

So far the only relief I can get from my symptoms is when I'm asleep, when I'm meditating and weirdly when I'm eating, during which my symptoms seem to magically subside to almost nothing. Once I realised this I began chewing gum, which helps significantly. Neither the ENT consultants or the neuros I've discussed it with can offer a realistic reason why this should be so, but it has to be better than taking the Nortriptyline I've been prescribed to combat what my latest ENT doctor has labelled 'migraine related vertigo' Sounds like clutching at straws to me. 

I'll finish here for now as you might find after reading this that your symptoms aren't a close enough match to mine, but if you need to discuss more aspects or have questions please drop me another comment. 

P.S I'm also suffering with anxiety; how could I not be when I have a set of symptoms that effectively put my life on hold?

11

Yes my symptoms are exactly as you have explained.  I too have some relief when chewing gum and and symptoms disappear when eating.  I have a constant feeling  like my head is under water.  I am to see a physiotherapist who specializes in dizziness although I’m not sure she will have much to offer. I’ve been down this road before.  They thought that it may be coming from my spine.  I’m not sure what the next step is but I feel like my doctors have kind of given up. I was told that I may just have to accept the symptoms as sometimes these things cannot be solved. I don’t want to believe this.  

12

... and yes about the anxiety.  I am told that the anxiety causes these symptoms, but like you I feel that I have anxiety because of the way I feel.  

13

I had my VEMP test yesterday; the results showed that my inner ear function isn't significantly poorer on either side which pretty much rules out the possibility of a dehiscence. As far as I'm aware that's the last clinical test that can be done for dizzy patients in U.K National Health Service  hospitals so now they're talking to me about vestibular migraines. I'm being encouraged to carry on with my vestibular rehab exercises and to examine my diet to identify possible triggers. I interpret this approach as 'We now have no idea what's wrong with you, but we have to call it something in order to recommend a treatment strategy, so we'll call it vestibular migraine.'

Are you in the U.S Christine?

14

I am in Canada.  I’m sorry that you hit another dead end.  I have too been through vestibular physio therapy and all they concluded was that I had poor balance.  Why do you think that the symptoms disappear when meditating and eating as I too have relief with this.  Have you had your heart checked?  They checked my heart last year but came up normal.  They keep thinking vestibular but as mentioned I have no spinning or feeling that I will pass out.  I  saw a natural path who changed my diet. They took me off dairy and wheat. She said to try magnesium supplement as my magnesium was low.  My vitamin d was normal but low normal so she advised that I take supplements. Ive been told to try to ignore the symptoms as I’m put too much of my focus on them but it’s hard to function on a daily basis. I’m tired of it. I just want some relief.  I’m not sure what the next step will be?  I pray that you find some relief.  

15

Thanks Christine, to be honest I wasn't expecting any great enlightenment from my last appointment, but I'm sure you'll understand that. 

I've researched my symptoms online extensively over the last year, and up to now I've not been able to find any information which connects chewing or eating with the immediate relief of dizziness. I find that really odd as, although it may not be a common experience for people who suffer from vertigo, the law of averages suggests that you and I can't possibly be the only two people in the world who have experienced it! Also, given that the connection has to be the single most significant piece of evidence to consider when reaching a diagnosis, I find it annoying that all the doctors and health professionals that I've discussed it with don't give it any more than casual consideration. 

I had my heart checked fairly early in the investigation process; they were looking for atrial fibrillation, which can cause dizziness, but found everything to be working as it should. I've also had my neck arteries checked for possible blockage but again - everything o.k.

They haven't suggested to me that the symptoms are caused by anxiety but if they do there will be blood. Given that doctors freely admit that they know very little about the function of the balance system, I would find it really lazy and arrogant if it were suggested that my symptoms must be due to something psychological just because they haven't been able to make a positive diagnosis using tests and knowledge that are currently available. 

Don't know whether you use social media, but the VEDA organisation has a very active and informative Facebook page with regular online forums that you can take part in, and lots of advice from professionals in video clips.

 

16

Like you Brian, this is the first and only thread ive come across that comes close to describing these symptoms. ive been having them for 3 months and just started Nortriptyline. Has anyone here found any relief/answers?