Magneto Head (the feeling of being pulled to the ground)

Gosh poor you Margaret. Glad you get some improvement with meds. These vestibular conditions suck. Ugh.

@turnitaround @Revolving Thankfully this feeling doesnā€™t make me have to lay still and do nothing for 14 hours. But, this feeling that used to come and go has now become constant just in the last 2 weeks, and Iā€™m completely terrified. Usually if I get a horrible, worse sensation it only seems to last 2 weeks, tops, before I return to my ā€œbaselineā€ dizziness. However, this has gone on for 2 and a half weeks now with no sign of relief. I am terrified this sensation will become the new ā€œbaseline.ā€ I feel the pulling down sensation every time I walk, even if itā€™s just in the apartment moving around. And the jelly leg feeling is getting VERY worse. Monday and Tuesday this week I went on my short daily walk and had to walk the next day for a doctorā€™s appt and I couldnā€™t feel where my legs were. Have either of you ever experienced that? I was walking but couldnā€™t feel my legs, as if my head was disconnected from my body. It was the first time Iā€™ve ever seriously considered going to a wheel chair, just to never feel that sensation again. Although I live on the 3rd story so I need to be able to do steps. Thankfully going up the steps isnā€™t as bad, but going down is very difficult for the shaky/jelly legs.

Have either of you had this experience constantly every time you get up and walk around? It used to just be every now and then for me and itā€™s become constant. I was struggling last night to keep the panic down, and the anxiety/panic part of this condition had gotten better until now.

And honestly, my legs have even felt odd while lying in bed or sitting on the sofa. This is new, just yesterday and today. Iā€™ve had calf pain A LOT in the past but this is additional, almost coming from the knees down to the ankles. It makes me think something else could be wrong, but I know itā€™s probably just MAV doing something else crazy. Thankfully my legs havenā€™t felt heavy, yet.

Thank you both for listening. I also am currently without a knowledgeable neurologist. The one I had been seeing for a year just told me she doesnā€™t think this condition is ā€œneurologicalā€ and told me not to take medicines and that I didnā€™t have to see her again unless I wanted to. She thinks CBT and relaxation techniques will make me better. Yes they help but thereā€™s NO WAY they can help ALL these torturous sensations. Sheā€™s really not a headache specialist, I should have stopped seeing her awhile ago. I saw her this past Thursday and she didnā€™t even care to hear about my leg sensations or any specific sensation. That isnā€™t comforting to me.

@Revolving No worries, Iā€™m glad you contributed, the more the merrier. (as merry as we can beā€¦ugh!) Thankfully my back pain isnā€™t limiting, to me it feels like the pain (especially sciatic nerve pain down my left leg) is contributing to the pulling down feeling. I know Iā€™ve had sciatic nerve pain before (as I have a herniated disk low back) I had any pulling down sensation or jelly leg, so I may be incorrect, but itā€™s just what it feels like. I donā€™t know how you continued to walk your dog, as much as I love dogs and want another dog I know I couldnā€™t reliably walk one a few times a day. Iā€™d be too nauseated from these weird sensations to function. Iā€™m already losing my sanity just having to get up to make lunch and do basic daily functions.

Jess, you know my thoughts on this ā€¦ I happen to think this dysfunction is physical. I canā€™t see an obvious way you could spontaneously get a brain condition that causes this ā€¦ and whilst this causes neurological effects, it surely must be down to some kind of injury or upset to the inner ear at the root cause. These very odd sensations are probably adequately explained by pressure and leakage. The fluid in the inner ear is finely controlled by several mechanisms, if you have a leak through injury of one of the windows into the middle ear, the management of fluid level in the ear goes awry and you get swelling. I believe its that swelling which ultimately causes your ear to leak yet again despite a healing wound. A major leak is now worse than the first as its under pressure, leading to significant fluid movement picked up by the senses which initially causes vertigo, then perhaps leaves a deficit of fluid which goes on to give you imbalance and other odd feelings. This goes on and on episodically until the wound scars over sufficiently to trap the pressure. At that point the pressure has a chance to abate as the system starts to behave more normally. Have you ever seen a good ENT surgeon to discuss your symptoms? Iā€™m not sure they may be able to do much to speed up the healing process but at least you could actually get answers for your seemingly intractable condition (but one which may one day settle down, just takes time)

In short a Neurologist may be able to help you manage the impact of your symptoms (but appreciate youā€™ve not had much luck so far), but canā€™t see how they would ever cure you. Only your body can do that, or possibly an ENT surgeon.

@turnitaround Yes I do understand your thoughts on it. I know itā€™s not a brain condition, I guess my biggest concern is some type of nerve damage in my legs, or perhaps that my herniated disk in my lower back is suddenly now contributing because I am de-conditioned and my lower back muscles are weaker from lack of activity (the doctors always told me my herniated disk should be fine as long as I keep my lower back muscles strong, sigh). But itā€™s probably none of that.

My understanding of my condition from the Johns Hopkins vestibular clinic was that nothing was wrong with my inner ear. They did a battery of tests, I even went through a rotary chair test, and there were no issues anywhere to be found. Iā€™ve never even had any ear pressure until the past year or so. I donā€™t seem to have many problems with my ears unless I get a head cold, but I do have a TMJ issue (most likely joint damage according to my neurologist) that is affecting the STM muscle that goes right below the ears, hence why I feel pain below my ears.

I saw an ENT when I first got these symptoms 6.5 years ago, but he wasnā€™t a surgeon. I got an EMG done and again, everything was normal and he referred me to a neurologist for vestibular migraine.

I am getting worse and more disabled instead of better. I do think my one and only ā€œtrueā€ vertigo attack that happened 2 years ago triggered the worsening of my condition. But still, 6.5 years in total and now 2 years from the most recent change is still a lot of time.

My concern, Jess, is that tests they perform are not sensitive enough to pick up mild Hydrops and there IS no widely used clinical test for a fistula. So if you have mild Hydrops and a recurrently breaching fistula your chances are slim for this to be picked up in tests. I believe it is possible a VEMP test can pick it up Hydrops, but its not supposed to be very accurate - did you have that test? I have not, but my case history was enough to establish my issue.

Iā€™ve posted this before, but work in Japan is getting closer to a test that might be used to identify patients with fistulae more easily. It is quite interesting to note that the paper suggests they are much more common than recently imagined (there was a time when they were considered commonplace) and many patients were positively identified who had no history of trauma (as in my case):

The conclusion is shattering: " Our results indicate that PLF should be considered as a cause of cochleo-vestibular diseases which have been previously neglected or misdiagnosed." That flies in the face of a two decade old dogma.

http://www.tandfonline.com/doi/full/10.1080/00016489.2017.1300940

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Jess can you ask for an EMG test? It measures the speed of the the reactions of your muscles to electrical stimuli. I had it done because of my leg problems and they saw I had had a herniated disc and that I have carpal tunnel syndrome but could not find anything sinister to explain my jelly legs. My neurologist ordered it for me. It will put your mind at rest to know that all the nerves have been looked at and the test is not painful, just weird! It gave me the confidence to keep walking to keep my muscles strong because, like you, I felt I would become wheelchair bound if I didnā€™t keep walking. It is the best thing I have done, that and the meds that allow me to do I at all of course!

Sorry for waking uo this thread but I wanted tonask something @Jess09 do you still have the PPPD diagnosis?

Ah, James. Thought of you only yesterday when I woke up to the very same. Something Iā€™ve only ever experienced a couple of times before and indeed I feel the same. The meds are keeping a full on attack at bay but only just. I can stand and walk around indoors, just.

Jessā€™s quote describes it exactly

Oh Iā€™ve a huge amount of head pressure (migrainous) but no visual issues and hence no nausea, no light/sound sensitivities or ear action but a neck with several hatchets stuck in it plus a lot of lower back pain if I stand a lot but thatā€™s only to be expected with balance so off kilter.

The culprit, exactly 36 hours before it started, I got back from a largish day-time family gathering for a Christmas meal at the house of relatives. Ah, the joys of enjoying oneself! Helen

Oh no! Sorry to hear, perhaps in my top 3 of worst symptoms :frowning:

No sure where Iā€™d place it in my own Top Ten but one thingā€™s for sure, 36 hours in, itā€™s really eased up now, dare I say, almost gone and boy! Doesnā€™t better feel wonderfully good. Thanks meds.

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I am visiting my father in the hospital in Colorado and am noticing it is feeling like I am being pulled to the ground. I have never felt this dizzy or feel like it is really hard to walk like I am pushing against something. I first started feeling like this after getting off the elevator to the hospital room on the 11th floor. Has anyone had this? If so, how long did it take for it to mellow out. And any ideas on how to feel better? Iā€™m finding it really hard to take care of my dad feeling this way and it has been 2 days and the symptoms have not gotten any better.

We canā€™t give you a diagnosis but that sounds like a balance disorder symptom to me. I had something very similar in a hospital coming out of the lift. Apart from The other symptoms I was actually standing bent almost double. On later occasions identical symptoms coming out of supermarkets. Itā€™s an indication you have a balance problem. Speak with your doctor as soon as you can meanwhile avoid exposing yourself to such stimulating environments. Stay calm and rest up a bit and it may settle. I donā€™t think thereā€™s a pill that will just stop it. Get in touch with your doctor for proper advice soon as you can.

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Thank you Onandon03,
I contacted my neurologist and they are raising my dose of ami. They also gave me something for the nausea. I see a neurologist at the Mayo Clinic but they were not sure if this is migraine related or something else. I have been having a hard time focusing my eyes for years but never any symptoms of moving while laying down or feeling like I canā€™t walk. This is definitely new for me and hopefully will ease up soon.

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I could have guessed they would increase the Ami.

Definitely sounds very much a balance disorder issue to me. As I said I suffered similarly. All manner of seemingly unexplainable peculiarities occur during the years between my VM moving from episodic to chronic, none of which I connected at the time to my vertigo attacks. Veering off whilst out walking. I remember feeling violently sick sitting in a car in a heavy downpour watching the rain pour down the windshield. I remember stopping moving, both walking and in a car, but feeling as if I was still travelling forwards and sitting in a reversing vehicle - yuck. Another day, doing the big pre Christmas supermarket shop I suddenly felt as if Iā€™d been hit by The Flu, all shivery and had to rush through checkout and get home. No Flu followed. In retrospect Iā€™ve wondered whether, had sone medical person had seen me to discuss these occurrences they would have recognised the problem. Somehow I very much doubt it. They donā€™t know enough if how all that hypersensitivity affects peoples senses. Iā€™d lay money itā€™s related as are your eyes.

Not much idea of your VM history but since you mention eyes can I suggest you check out references on here relating. Thereā€™s plenty of them. I wrote most. I was told ā€˜Eyes Is Balanceā€™. Have you had yours fully investigated? Btw, if you wish to continue this conversation, please give me an indication of the time line between your eyes not focusing, the development of VM and start of medication. I spent so long down that road pre diagnosis there might just be a contribution I could make.

Amitriptyline did nothing for this symptom for me. It just went away on its own. Itā€™s hard to prove, but
I suspect Ami never saved me from vestibular attacks.

Iā€™ve moved the Topic because itā€™s the same as this one.

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Thank you so much for the advice! Yes, I have had my eyes thoroughly investigated and they found nothing. I woke up one morning about 5 years ago and my eyes felt like they could not focus on anything and I was having pretty severe derealization I had every MRI and test in the book and nothing ever showed up. It was about a year into my symptoms that I got diagnosed with vestibular migraine from the Dizzy Clinic in Chicago and received ami. I have never actually had much head pain at all but some pressure. Also, I had never had any problems feeling ā€œdizzyā€ per se until recently. The ami had seem to really help up until this point. I will try to post on the main forum about my story. I just have to figure out how first.

Turnitaround,
Thank you for the response it gives me some hope that it will get better soon. I have been just crying the last couple days because I am pretty much bedridden and am terrified of being stuck like this.

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Hang in there Chelsea. Itā€™s a really horrible symptom. But if there is one guarantee with MAV is that it changes and attacks blow over. :heart:

Thank you!! That makes me feel so much better!! Itā€™s been so nice to find people who understand :smiling_face: How long did it take for you to feel some relief? I looked at your post and it seemed like two weeks. Is that correct?

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