OK, I have to ask this because I can’t find any help elsewhere. I have been having he dizzy bouts all summer and they tapered off for a little but now seem to have come back full force. I feel like I’m going to get dizzy…but I don’t get dizzy. Any of you experience this? I can just be walking at a slow pace and wham the feeling hits. I don’t actually get dizzy but it feels like I will. My neurologist didn’t seem to know what to do and I have a few weeks yet before my next neurosurgeon visit. They will be doing a flexion MRI that day as well but this feeling is getting to be a nuisance. Especially if it hits when I’m driving. If you have experienced this, what did you find to help? Nothing in particular seems to set it off but dang its frustrating when you are trying to get stuff done and have to stop for a minute or so every so often for it. Its been bad enough that I am starting to get really worried about it.
My Chiari started the same way. My family physician initially thought I had an inner ear infection. When the dizziness did not go away he ordered a brain MRI and there was the Chiari Malformation. You need that MRI for sure so they can get your dizziness figured out. It is really frustrating to deal with.
My son has many of these symptoms, and has a mild chiari 1 malformation, but the csf is not very blocked. Maybe his symptoms are more from ehlers-danlos.... wow!
I only have a few of those problems…just dizziness and light headed feeling though they don’t kick in completely. Visual problems only when I am dead tired…and possible sleep apnea. I have to get tested for that.neck pain all the time and headaches…but some headaches are just from my sinuses and allergies.I did mentionsde to my neurologist earlier this year and she said my symptoms didn’t correlate with it. But I have an MRI scheduled on Nov.24 and that is with flexion. Then my appt with the neurosurgeon is later that day so I’m going to ask him since he knows more about it and deals with it more regularly than my neurologist.
I am post-decompression and I had dizziness problems for a long time. I do not have inner-ear or other problems. But, I found out that I do have overactive reflexes centered in the brain caused by Chiari that affect my balance and dizziness. I do a series of these reflex-based exercises that wipe out all those funny feelings cold. Very pleased. I have only had to do them twice since my surgery. I got them from a vestibular trained physical therapist who knew enough that it was not my vestibular system but that pesky brain of mine. If you are more interested you will have to let me know.
I would be interested to hear what those exercises are. Is it the Epley maneuver? We have tried that and it did not help.
gabby_jazzypants said:
I am post-decompression and I had dizziness problems for a long time. I do not have inner-ear or other problems. But, I found out that I do have overactive reflexes centered in the brain caused by Chiari that affect my balance and dizziness. I do a series of these reflex-based exercises that wipe out all those funny feelings cold. Very pleased. I have only had to do them twice since my surgery. I got them from a vestibular trained physical therapist who knew enough that it was not my vestibular system but that pesky brain of mine. If you are more interested you will have to let me know.
Hi Dozzy
The reflex exercise that works best for my vision is called the Hand Supporting (parachute) Reflex exercise. Standing in front of a wall I do a standing push-up while focusing my eyes on a spot right in front of me. When I am close to the wall, I hold that position (and my eye focusing) for 5 seconds. I repeat 10 times. I do this 2-3 times a day for a couple few days until all my balance and funny vision stuff goes away. It is usually gone the first day but I do them a bit longer as a preventative measure.
The other exercises that I do are for those funny balance or dizzy symptoms that happen when I move my head (looking over my shoulder when driving, rolling in bed, looking up). I do them all together with the Hands Supporting exercise. All my dizzy stuff seems to come all together so I make the exercise programme a package deal. They are too detailed to list what all I do but youtube has some demonstrations if you are interested. If you go on-line and google your area and "primitive reflexes" you might even find someone who knows about them that can show you. Don't let them be frightened off because you have CHiari and are an adult. The reflexes work for lots of people who have a variety of neurologically based disorders.
Asymmetrical Tonic Neck Reflex (ATNR)
good for bad balance when I look over my shoulder
Symmetrical Tonic Neck Reflex) (STNR) - has a flexion and extension and a lateral component
good for bad balance when I tilt my head
Moro Reflex (also called the startle reflex) - has a flexion and extension component
Tonic Labyrinthine Reflex - extension and flexion component
good for bad balance when I am standing and close my eyes
Landau Reflex - extension component only
A lot of the dysautonomia symptoms that are listed on this site and which I have/had? are pleasantly addressed with these exercises. Hopefully you can find someone to give you a hand with them. Since most of the exercises contain a neck movement component us CHiari people have to be careful with them ***. Start with one and see how you do. **Slow and controlled (do not need to go to your full neck movement if that is going to aggravate**. **Some times, people get all nauseous and ill feeling with the Moro exercise**.
Gabby
Dozzy said:
I would be interested to hear what those exercises are. Is it the Epley maneuver? We have tried that and it did not help.
gabby_jazzypants said:I am post-decompression and I had dizziness problems for a long time. I do not have inner-ear or other problems. But, I found out that I do have overactive reflexes centered in the brain caused by Chiari that affect my balance and dizziness. I do a series of these reflex-based exercises that wipe out all those funny feelings cold. Very pleased. I have only had to do them twice since my surgery. I got them from a vestibular trained physical therapist who knew enough that it was not my vestibular system but that pesky brain of mine. If you are more interested you will have to let me know.
I don’t have inner ear problems but I do get ringing in them a few times a week at the least and they get really itchy. Had tests done and everything in fine for my ears so we think its just from my allergies and sensitive skin. But these exercise may be useful. I will ask my neurosurgeon when I go on the 24 and if he doesn’t have any ideas, I will see about these ones. I just know I’m sick of it. Pain I can take but not the dizzy and lightheaded feelings.
Thank you for the list of exercises. I will be sure to get some help with them.
Yes, thanks for the list. I will be looking some of these up this weekend since i have 4 days off. LOL It wasn't as bad today but i was really tired. as is normal for me.
Hi Furie
Please note that these exercises are not for people who do have inner ear problems. A person would need different exercises to help them with that! Also, I do not think that your neurosurgeon will have heard of primitive reflexes as a way to help with CHiari related balance problems. I know that my neurosurgeon was looking at me like I had a horn growing out of my forehead LOL! when I asked him about them! Anyways, good luck with your research on them. I know that they have sure helped me with all that wonky balance and dizzy stuff.
Furie18 said:
I don't have inner ear problems but I do get ringing in them a few times a week at the least and they get really itchy. Had tests done and everything in fine for my ears so we think its just from my allergies and sensitive skin. But these exercise may be useful. I will ask my neurosurgeon when I go on the 24 and if he doesn't have any ideas, I will see about these ones. I just know I'm sick of it. Pain I can take but not the dizzy and lightheaded feelings.
Furie, nice to hear from you! But sorry you have this going on…don’t know what to say other than the typical EDS or POTS culprits. Another thought crossed my mind, disassociation??? That’s a pre-dizzy kind of sensation, but couldn’t tell you where to go with it.
Jenn
Furie18,
I have this same issue. In fact I am home today because it was particularly bad today. I find that I have a couple of triggers that will set this off for several days. Basically, the triggers all related to staining of some sort. For example, if I carry several bags of groceries in at once or carry anything with much weight, I will have symptoms for days. I am someone who likes to do everything myself, so this is very frustrating.
oh geez, i don't think disassociation would be it.. unless there is part of the Depersonalization-derealization disorder that may involve this. i will have to add that to the list for the doctor. LOL i am just ready for this to stop!
Update: Had my mri today. Tehre is good news and bad news. Bad news.... nothing can be done for the dizziness and such. good news... Nothing has gotten worse. Bad news... nothing has really changed.... good news...the small spot of fluid they saw actually got a little better and i dont' have to regularly see this dr. But if ANYTHING changes, i am to make an appointment right away. Other good news, i asked him about the other conditions adn he said i definitely do not have EDS nor any of the other ones mentioned. :-) The dizzy spells i get are most likely from pulling of the muscles around the spinal area. Cause they are so tight and sensitive. Kinda like a pinched nerve. So all we can really do is what i have already been doing. if they get worse, i am to make an appointment. :-) so it is kinda good news. but the small pool of fluid got smaller!! YAY!
Not a bad report! My son is seeing a National Upper Cervical Chiropractor (NUCCA). He gets a very precise and gentle adjustment of his C1 (atlas). So far it is helping. This is not typical chiropractic care. Hopefully, he will continue to feel well. Best of luck to you!
From what you're describing, I have the same thing. I can move around my home or my office just fine but if I walk around the mall or go grocery shopping - the almost dizzies hit me. I've had a hard time explaining it to my doctors and my family. It kind of feels like I'm stepping off an elevator but I'm just taking a normal level step except that doesnt' completely describe it either. I can feel it when I'm sitting at my desk sometimes too. It got really bad (to the point of nausea and vomiting) when my symptoms were really bad. The dizziness is one of the top reasons I started seeing the doctors that led to my chiari diagnosis. I'll feel it sitting at my desk occasionally but have never once felt it when I was driving. I haven't found anything that helps except going slow when it happens and resting as soon as I'm able. I do have an appointment with an audiologist for a balance test to make sure that it's not anything inner ear related as a precaution.
I have been able to get help with this with an experienced acupuncturist. The dizziness episodes have stopped and equilibrium back where it should be. Please consider finding someone you can trust and knows Chiari.