Constant dizziness

Hi Guys:

I am new to this forum. I was just wondering if many or any of you guys suffer from constant chronic dizziness. Not vertigo rotational dizzines, but almost like MdDS, where there is a constant rocking sensation and a constant extreme motion sensitivity. This dizziness of course always gets worse with any head movement, bending down, or lifting heavy items. My Chiari doc doesn't seem to think this is a very common symptom of Chiari and is at a loss as to how to treat me for it. Is he correct in his view that constant dizziness is a rare symptom for Chiarians? Have any of you ever tried antidepressants for dizziness? Have they worked? If so, which antidepressant? I have heard sometimes people with chronic dizziness are prescribed antidepressants and it can help tremendously. I would appreciate any feedback on this issue, no matter how small. I am just trying to educate myself. I feel like I have to be my own doctor in a sense but I am truly lost and feel utterly helpless.

I definitely had the dizziness thing going on - no it was not inner ear crystal problems. I have put up a post on the "Chiari Info for Members" part of this website. The exercises are work and take some effort to figure out. The time is well spent and I have been dizzy free for some time. No medications. Very please with the no side-effects part of this treatment. If you have any questions by all means drop me a line. Good luck in finding a solution.

Hi Gabby Jazzypants:

Thank you so much for your swift reply. I did read that article on dizziness and printed out the exercises. I am looking for a physical therapist, perhaps who is familiar with primitive reflex, to help me with them. I know they will be difficult and will make me dizzier, but I am willing to give them a shot. I know you said to try these exercises 2x per day. If they work for me, which I am praying they will, how long until you think I will see some kind of positive response? A few weeks? Dare I say, a few days? Or are we talking a few months? How long until you saw results?

Hi Hope

For me, the exercises did not make me dizzier, hopefully that is the same for you. In terms of how quickly they worked, my dizziness was gone in a couple of days. Please note that I am post surgery which can make a difference in response time. I have had to repeat the exercises about every six months and it has been nine months since I did them the last time. I also am familiar with the exercises and did not have a big learning curve.

I do not believe that you have had the decompression surgery. My understanding is that response time will no doubt be longer and that you may have to keep one or some of the exercises on a more regular basis than I do simply because the stressor that is Chiari remains and affects your brain on a continuous basis.

The exercises are not hard of themselves just tricky to learn as they are complicated. If you have someone who can work well with you, you might want to try having them read out the next step as you focus on your body movements. Follow the warnings!

Good luck

Hi Gabby jazzpants!

Thanks again for such a swift response. I so appreciate it. Well, I am completely encouraged. I am so excited to try these exercises. I have tried quite a few things and nothing helps. Acupuncture, vestibular rehab therapy, twice, and quite a few other things. The list is long. You are right. I have not had the decompression surgery as my main symptom is dizziness and my chiari doc has always told me that the surgery is iffy as far as relieving dizziness. I have had this dizziness for quite a long time though, (like many years) but I still remain hopeful I can get some relief. Anything, I will take whatever I can get, lol. I am desperate! I will follow all your little suggestions as I do the exercises. Like I had mentioned in my original post, I was ready to try antidepressants and also the Paleo Diet. (By the way, you seem so knowledgeable, do you know anything about the Paleo Diet and its' effects on Chiari symptoms?) However, first I will give these exercises a go. I will let you know what happens. Thanks again!

Hi Hope

Sorry I can't comment on the Paleo diet. I am an eat real food, mostly plants, not too much kind of gal and that is as far as it goes. Good luck with the exercises and I hope that they work out for you.

Take care

It's interesting that some doctors don't find the connection between one thing or the other in connects to Chiari. I have been doing so much research on this because I wan't to know what to expect. In one of the YouTube videos I looked at a Dr. mentioned that every day they find new symptoms associated with Chiari. Many may not experiece the same symptoms but he said not to discard the possibility that it may actually be connected in some way to Chiari.

Hello, I too get dizziness, it's hard to explain, certain movements, lifting, which I try to avoid. When you get vertigo and dizzy at the same time, that is when I lay in bed on my big ice pack. I have been on 2mg Valium twice a day for awhile, it helps me. My ENT doc put me on it, meclizine never worked for me, made me worse. I also use essential peppermint oil on my neck, my compression dimple and anywhere else I feel the need, it helps with pain for me. I hope this helps you.

Hey Hope,

I just came across this post and was wondering if you ever sorted out your dizziness? I’ve recently been experiencing something exactly as you describe it (MdDS w/ extreme motion sensitivity). Let me know if you found anything that worked for you!

Hi Jay

I still stand by the primitive reflex approach to deal with vestibular processing difficulties. Chiari affects brain function so it makes sense to normalize that brain function as much as possible by minimizing the impact of improperly integrated reflexes.

When you’ve been told nothing is wrong with you and the standard “crystal” approach does not work, these work great - especially if post - Chiari surgery. If not, they can still assist but just might have to become a regular part of your routine, maybe not daily once established, but on a frequency schedule that works for your symptom sensitivity.

It would be nice to hear how Hope has made out but she appears to be a one day wonder! Hopefully, it went away on its own for her.

Hi guys. Just seeing this post. Unfortunately, I am not a one day wonder Gabby. Wish I was. I finally found some relief for my dizziness after many years of searching. After complaining to my chiari doc that the dizziness was getting progressively worse, he finally questioned if the dizziness was truly caused by my Chiari malformation. At that point, I decided to search the Internet once again, as I had done so many times before. Finally, after much searching, a breakthrough. I found a doctor at UCLA who was conducting a study on MdDS. I immediately called her and told her my symptoms over the phone and essentially begged for help. She gave me the name of a doctor, a neurologist, Dr. Catherine Cho, who practices in New York City at NYU Langone. After waiting three desperate months for my appointment, she examined me, put my head in crazy positions that made me very dizzy, of course, and said to me “the problem is your brain“ to which I replied, “My Chiari?“. She emphatically, to my surprise, said “no“. To make a long story short, she diagnosed me with PPPD. You can read about it online as it is a relatively new diagnosis which many people suffer from. Treatment is SSRIs and vestibular therapy. I am currently on 10 mg of Lexapro for which I have found tremendous relief. However, I do still struggle with dizziness on a daily basis, but nowhere near what I used to experience. My doctor would like to see me go up to 20 mg to see if I will get more relief, but because I did not find much more relief when going from 5mg to 10mg, I chose not to as of now as I do not want more side effects from a higher dosage. I tried vestibular therapy which helped to a point. Then I stopped as the exercises make you so dizzy. Because PPPD is rooted in anxiety I do talk to a therapist and do relaxation exercises. Both of which are recommended for PPPD. Anyway, thank goodness I do feel a lot better, however, I still work on my health every day. I hope this helps you Jay. I know the pain and suffering you are experiencing. Don’t give up. Be persistent like I was and you will find some relief. If you have any other questions, please reach out to me again. Good luck to you in this journey!

Hi Hope

You are officially a two day wonder - for this site I mean! It is great to hear your struggles and successes when it comes to your dizziness. Such comfort to find people who are able to assist with poorly understood symptoms and the causes that lurk behind them.

Given what you you talk about, you definitely are a candidate for the primitive reflexes that address vestibular development. They would be another tool in addressing that persistent dizziness.

For my dizziness, I have found it to be a work in progress. Finding different people along the way who had a different set of tools and knowledge was helpful to progress my treatment and address the various components of vestibular difficulties… All therapists do not practice the same brand of vestibular therapy. Before the primitive reflex break-through, I saw 4 different vestibular therapist, that were of little help. After giving the reflexes a good go, I then found that the vestibular therapists were able to help me with the bad balance and challenges of navigating my body through space that remained.

Considering that you are still experiencing daily dizziness, it would appear that your systems have reached a plateau with your current regime. Do continue with your persistence in a new direction. Who wants to stay at the same level when there is more to explore!