Mikey69 Posted September 28, 2015 Report Share Posted September 28, 2015 Hi All,I trust and hope you are all feeling as well as you can be :-)I have another question i'm afraid, only this one isn't for me, it's for my lovely partner who has just been diagnosed with Dysautonomia and borderline POTS (what a great couple! - we are both sick bunnies, haha!) At least we understand each other lol :-)My question is as follows:Partner has recently had an MRI brain scan and a vestibular function test. These haven't been discussed with the ENT specialist as yet, but Cardio specialist gave a good account thus:A borderline Arnold Chiari Malformation (Cerebellum brain stem slippage), Apparently nothing to worry about.Vestibular function test was abnormal. When warm water was syringed into her left ear it produced horrific symptoms - severe vertigo, disequilibrium, dizziness, almost passing out, severe nystagmus, etc. All the other water tests only caused mild symptoms, so this appears to be a left- sided problem, an imbalance as it were.We have also noted that she can sometimes stumble, lose balance, fall for no apparent reason. Also she is able to walk and turn head in one direction without losing her balance, but always struggles to walk in a straight line when turning her head to the opposite side. So again, a one - sided balance issue?We are struggling to determine whether the ACM can cause this or whether Dysautonomia can also cause such balance and vertigo symptoms.If anyone on here does have balance issues and/or vertigo problems, and abnormal vestibular function tests I would appreciate it if you could reply and let me know your experiences.We are seeing the ENT specialist in a few days and would like to know more about this before we attend the appointment.Thanks in advance,Mike :-) Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 29, 2015 Report Share Posted September 29, 2015 Vestibular problems can actually be an underlying cause of POTS or orthostatic dysfunction. I have never seen that it goes the other way around in any literature.However, my understanding is the Chiari Malformation can cause vestibular issues. And, also my understanding that any Chiari should be investigated thoroughly. Has your partner had an upright mri? In the US, an upright mri is considered the gold standard for diagnosing Chiari and t determining the severity of the chiari. The position of the chiari can change based on laying down for a standard mri vs. the upright mri where you are sitting so both body position itself and gravity would accentuate the chiari. I'll look for some reference for chiari for you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 29, 2015 Report Share Posted September 29, 2015 http://www.chiariinstitute.com/chiari_malformation.htmlhttp://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted October 2, 2015 Report Share Posted October 2, 2015 Katie is right on this-Chiari needs further follow ups and autonomic dysfunction includes balance-we expect our vertical and horizon norms to be solid but with autonomic issues its just one more thing it can cause. My peripheral neuropathy is probably POTS but since I won't see specialist till the 30th I am guessing Quote Link to comment Share on other sites More sharing options...
Mikey69 Posted October 3, 2015 Author Report Share Posted October 3, 2015 Hi Kateybug,I hope you are doing ok?Thanks so much for the links. They make for very interesting reading. We have both researched ACM and feel well informed. had an appointment with ENT specialist and discussed this, but as suspected she couldn't tell us anything (not her area of expertise), so We are waiting for a referral to a neuro surgeon.Hi Debbie Rose and Robstahlobstah,it is a pleasure meeting you both. Thank you so much for taking the time to reply to my questions. Your input is gratefully received and very useful. We have been doing a lot of research on this since my partner was diagnosed with POTS, Dyautonomia, ACM, etc. So we are much more informed now.Its funny how life goes sometimes isn't it? When i first met my partner i was the ill one (CFS/ME and Fibromyalgia), then a few years back my partner got ill, but to be honest she always seemed sickly to me. She was diagnosed with CFS/ME and Fibromyalgia a short time later (She has had Fibro since before i met her - she just didn't know it - Neither did i, but i began to suspect).Then i got my diagnosis of Dysautonomia earlier this year, and now my partner has just had her diagnosis of Dyautonomia!What a couple we make!?!**! lol! :-) Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted October 3, 2015 Report Share Posted October 3, 2015 You are a remarkable person Mikey, as is you SO. Not many people stay in relationships where illness interferes with expectations. When I started to adjust my lie to my illness-fibro in 95-I lost all my friends who could not understand why I looked fine but could not go out for a day on a day off. I had to reserve my energy for my job. And half my sibs (of 6) thought I was just "lazy". So pat each other on your backs, you are a special couple.Debbie Quote Link to comment Share on other sites More sharing options...
Mikey69 Posted October 5, 2015 Author Report Share Posted October 5, 2015 Hi Debbie,It's very good to hear from you again.Your very kind words are much appreciated. I didn't realize you are a fellow Fibro sufferer. i am very sorry to learn that you have lost friends and have struggled with family members. it's so typical for hidden illnesses. I too have lost the vast majority of my friends and have also had similar family issues with my brother. it's so sad really. I do recognize how **** fortunate i am to have such an amazing lifelong partner by my side. i don't know what i would have done without her of late thanks to this **** Dysautonomia. I am having a bad Dyssy spell at the moment, so i don't feel very special! haha! Quote Link to comment Share on other sites More sharing options...
Mikey69 Posted October 5, 2015 Author Report Share Posted October 5, 2015 Hi RobstahLobstah,Please bear in mind i'm still new to all this myself. But i have been a busy boy researching Dysautonomia since i found out what was wrong with me and that sounds pretty normal for Dysautonomia. I am surprisingly healthy given my broken body. I've always kept myself as fit and healthy as i can. I am fitter than most able bodied people in many ways. I've always really looked after myself and have a very strong and 'young' cardio vascular system. One of the things my body has lost control of in recent months is blood pressure and heart control. So, my blood pressure is all over the place most days. I'm currently taking beta blockers for high blood pressure - which i find amazing, given my lifestyle habits. So I don't think you need to worry, just keep a watchful eye on yourself :-) Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted October 7, 2015 Report Share Posted October 7, 2015 My daughter has left sided vestibular issues also. She has been dizzy for 7-1/2 years (she's 19). It's been a battle to keep her vertigo under control. Both of my daughters actually have it. Incidently, an MRI and verified by a CT found a cyst in her petrous bone near her auditory canal. She is actually happy that somebody finally found something. Now we're just waiting to hear from either her neuro or ENT as to what do we do with it. So, hang in there and I hope somebody can help you both real soon. p.s. I like your great play on the word "dyssy". Clever Quote Link to comment Share on other sites More sharing options...
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