Kaitlyn

Thank you! No he didn't need an upright MRI to make the diagnosis. Yes there are Chiari support forums and I will start perusing there for more info now that I know all of this and am facing the decision of surgery. Thanks for the thoughts and kind words. Take care of your neck - wishing you the best as well!

Kim - the pain in the back of the head sometimes into the the neck and pressure behind the eyes is one of the key Chiari symptoms confirmed by Dr Heffez again on Friday. I have heard of people coming to WI to see him from all over the country. Amy - yes it took a lot of determination to keep the collar on especially at night. It felt like I was being choked and made breathing difficult. long story short: the collar didn't help so though there are some issues in my neck they are not the cause of my symptoms. The Chiari is extending into the foramen magnum and causing brain stem compression. My case is not as clear cut as some so he can't guarantee results. If we do decompression surgery we could get excellent results to no results and I would have to be prepared for that going in. Obviously he feels the potential benefits outweigh the risks or he wouldn't offer the surgery (or be able to get it by the insurance!). I have a big decision to make. thanks for all your support! Hope you are both doing well! kaitlyn

PS - Kim according to my neurosurgeon the normal clinical requirement of size for Chiari isn't necessarily relevant. There is information on his website for the wi Chiari center. If you're interested look particularly for the study / poster board presentation I mentioned above.

Kim - what you describe is exactly what I woke up to in the middle of the night the day my illness progressed. I spent days and weeks in between rounds of Decadron feeling like I was in constant motion even when not moving. The slightest head movement was so awful. I am very sorry you experience these same symptoms. Mine are somewhat stabilized by low dose benzos which tell the brain it's not having the false sense of motion. What are you doing for treatment? Kim & Amy - regarding above they were convinced it was an inner ear problem. I had every test possible which was so miserable because though every test was negative it made me feel even worse. My ears have been cleared by not only one but two of the top Drs in their field in my state. It is a full time job trying to figure all of this out. The dizziness you describe Kim and that I think we are all talking about is not the same as POTS dizziness. That much I know for myself for sure. Whether it ends up being my neck or the Chiari I don't know but so far I am 6 days in on the collar and I have not noticed any relief yet. Unfortunately. Just a lack of sleep as the Vista is not real conducive to sleep lol. I will definitely update you after I see the neurosurgeon again. I see him Friday. Appreciate the conversation and connection about this! kaitlyn

Yes it is interesting and sometimes I wonder if a 3 mm flat would be 5 mm standing up. Or if there is no correlation. But I have read discussions on a different forum where people talked about getting a standing MRI. I am on a Beta blocker now so I don't have as much tachycardia (though I still get the symptoms) but I am often very dizzy getting up after prolonged sitting or lying down. That is one of the many catch 22s we live with. Trying to balance chronic fatigue with enough movement to keep the blood flowing. I get up very slowly, sit on the side of the bed first to get my bearings and then slowly stand and begin to walk. It's a hassle but better than falling. I miss the days of shooting out of bed like a rocket Not sure what meds you are on if any but one that has helped me some with the muscle weakness is Mestinon. An added benefit, well two actually: you can get a bit of a bump in BP and it also helps with bowel motility if that's a problem. As far as head / neck movement causing dizziness. I agree it is a separate issue. I am beginning to be able to recognize the difference in symptoms finally. This dizzy / balance thing happens even when my vitals are fine. No apologies necessary lol - great questions! I know I have had symptoms for many years but more severe progression over the last 5 years or so. Hope you have a better night tonight! kaitlyn

Hi Amy - Thanks for your response. I guess with Chiari or Cervical Stenosis a person could have similar symptoms. I have to be soooo careful with my head and neck. Reaching for things, turning my head, rolling over in bed, any movement can set it off. I definitely have a Chiari 1Malformation. I noticed on the vista collar order it was one of the diagnoses he listed. It was found on a laying flat MRI. It is about 3 mm which doesn't meet the current clinical classification. However, I read a poster board presentation that Dr Heffez et al presented in 2012 where they divided patients into three groups: G 1 3mm or less, G 2 5mm (normally required to be classified Chiari) and G 3 >5mm. What they found was actually an inverse relationship between between the size and the amount of symptoms. In addition they didn't find one patient in group 3 who had a worse symptom than those in the other groups. What Dr Heffez told me is that even though I don't meet the 'typical' clinical classification Chiari is a funny thing. I think he was ready to let it go at the collar didn't help last time, it's not your neck. But I want to be 200% sure before considering surgery for the Chiari so I suggested giving the neck collar another try to be positive. I am more able to differentiate symptoms now 2 years later and know what is caused by BP drop versus POTS versus this 'other' thing that hasn't been fully defined yet. The research I am seeing says 85-95% of patients see at least improvement. But he said I could have improvement but it isn't guaranteed. He also said we won't ever have more clarity than we do now. I have a Chiari. I have pots and it could be caused by it since there is no other explanation for the POTS or my symptoms. Chiari is one of those diagnosis by exclusion things. Yes the vista collar is the only one he would recommend. I complained about it because it was so uncomfortable and I wasn't sure it helped it all. I actually think I remember it hurting more than helping but he didn't budge as far as a softer collar. He said it wouldn't do any good if it didn't completely immobilize my neck. Hope that bit of info can help you. Thanks again kaitlyn

Two years ago I was told I had a small Chiari but that my symptoms were so violent the Dr. wasn't convinced it was the source of my problem. I saw him again this week because I had seen an article that discussed loss of fine motor skills and Chiari and when my neuro psych eval was done in addition to cognitive impairment I had decreased fine motor skills (I wouldn't think this would typically be caused by Dysautonomia, chronic fatigue, lack f oxygen due to lie BP etc) and wanted to discuss pain in my neck and some stenosis that had been noted. Anyway ... when he realized I have since been diagnosed with Dysautonomia and POTS he asked if they had an explanation for the POTS. Uhm ... no. Chiari can cause POTS and all of the symptoms you're having. Well I realized there was a connection but thought he had ruled the Chiari out. To make a long story short I am going to wear a vista collar for two weeks (again) to rule out any problem with my neck contributing to the dizzy/balance issue. He said if it isn't improved in two weeks the neck isn't the problem. Sounded to me like he was definitely putting decompression surgery on the table at that point. I'm feeling a bit shell shocked. So many questions are going through my head: could this clear up a lot my symptoms? What if it doesn't help at all? Is it worth the risk? Just wondered if anyone here had Chiari as the cause of their POTS, had decompression surgery and how successful or what your experiences were with it? Appreciate any advice. By the way, the Dr I am seeing is Dan Heffez of the WI Chiari Center and from the research I did two years ago he is one of the best in the country. Thanks in advance! kaitlyn

This is definitely a challenging subject. No wonder we make the doctors heads spin as well. No pun intended. There are so many types of dizziness and as Yogini pointed out there are many different causes - inner ear being the first thing they did a whole gamut of testing on for me to no avail. In addition dizziness is a very difficult symptom to describe, at least I have it to be. Possibly because with the overlap mentioned, when you have a couple of different conditions that can cause dizziness of one form or another it is hard to separate and distinguish symptoms initially and challenging to articulate. I have experienced vertigo, and also a constant sway/motion but mostly I have what I call dizziness and imbalance. Yes it sure would be nice if this were easier to diagnose and FIX. It can be overwhelming. I have a small Chiari that I am still not clear on whether or not it is impacting my symptoms and also stenosis in my neck (cervicogenic dizziness?) Dealing with daily Dysautonomia and POTS makes it challenging to do more discovery in these other areas. I guess all in good time. Am I whining? Lol it wasn't my intention but thanks to anyone who listened ?

Amyschin- you're doing just fine with the forum ? Im happy you're here - it's awesome to be able to support each other!!

Wow. It's amazing how similar your story seems to mine. It is so incredibly frustrating when you can't make sense of the symptoms or divide them up into reasonable piles. Ok this goes with that diagnosis etc. my main presenting symptom when I 'hit the brick wall' was dizziness and balance. It turned out I had Dysautonomia and POTS and a few other associated things, but I also have vestibular migraines. This is not related to an inner ear problem. It is basically migraines that can come with or without a headache with imbalance as one of the main features. I am in a constant state of it now and take maintenance meds (low dose benzos and Topamax) and then Decadron for rescue when I have a flare. I also can be dizzy lying down, rolling over, even just sitting, tilting my head back ... The list goes on and on and on. It is definitely NOT always related to low BP though I do have very low BP. I have been able to figure that much out for sure. Another thing is that the violence of the dizziness during a migraine flare completely trumps the lightheaded dizziness I feel with a drop in BP even if it drops to the point of passing out. hope this was helpful in some way :-) hugs kaitlyn

Amyschi- hello and welcome i wish I had something substantive to add. Just wanted to say I can relate. I am able to take some meds to help with symptoms and am grateful for that although it is a double edged sword as I really don't want to be on any synthetic medications. I take low dose benzodiazepines - without them I would be unable to function. Even with them I have low grade dizziness all the time that gets worse with flares. hope you get feeling better soon! ?

Hi Rainy - i haven't had any normal test results but mine have ranged from mild to much more severe depending on the day. The symptoms vary from day to day and moment to moment with Dysautonomia. I'm curious, were you on any medication when you had your tilt test and other autonomic testing? Also, some can show mild or no abnormality and you can still have symptoms. For example my qsarts only showed mild abnormality on my left foot ('please correlate clinically' note attached) but I KNOW that my body isn't regulating temperature correctly. So I don't really care what the test said. wishing the best and to get answers soon!! kaitlyn

Hi Kris - i have found that I can be in the sun as long as I am near water whether a pool to cool off in or the ocean. I prefer to lay on a float in the pool when I have opportunity and get some sun that way. But if I tried to lay in the sun without that option I know I would be in bad shape! I definitely won't be doing that ever again. Staying super hydrated also helps and a cooling neck towel for a walk on the beach with your feet in the water also might help with option to dive in if you start getting over heated. ironically I just got home today from 2 days by family who have a pool. I am freezing, my BP is 69/40 and pulse 53 at last check. Some of this is probably simply lack of sleep, too much visiting, being out of my normal routine and away from my 'safe' and normal environment - but some of it could be due to heat exposure.?. I would imagine if you are careful and make the necessary adjustments, plan ahead, etc you could still have a wonderful trip with your daughter seems there is often a trade off for 'us' though especially if we don't plan well and don't pace enough. kaitlyn

Good luck! Keep us updated if you don't mind ?

@roxie he didn't. And it seems strange in hindsight. But after I saw it on my discharge papers and looked it up I saw that it was pretty commonly diagnosed with POTS and it wasn't serious as far as 'heart disease'. Then we were busy trying to get my BP out of the danger zone and the IST wasn't on the forefront. I may bring it up at my next appointment just for clarification. I would also like to know if it is the IST alone or POTS both causing the continuing symptoms even on the BB. Can you make an appointment with a cardio? Do you feel you need more clarification of your symptoms? It's possible your Dysautonomia specialist might be able to answer some general questions although probably not specific cardio questions.