HopeSprings

I strongly believe there is a connection and have asked this question before. So many of us have ear/inner problems and the "type" of dizziness that goes along with this. Here is just one article that talks about the connection. http://www.jvr-web.org/Download/Feature_15_3.pdf If you "google" vestibular system autonomic nervous system a bunch of articles pop up about the relationship between the two. I am really brain fogged too and it's hard for me to do research, but my understanding is that there is a direct relationship between the vestibular system and it somehow contributing to blood pressure, respiration and heart rate control. PLease if anyone has any input or knowledge on this topic, please share. Naomi

I looked into this as well. I have had hematuria for several years now. Every time they check my urine there is either a little blood or a lot, but always blood. I went to a nephrologist and asked to be checked for Nutcracker Syndrome. He sent me for a CT scan of the area and the radiologist did report that the left renal vein was being compressed (or was it narrowed?) but only slightly, so they felt it wasn't enough to cause any problems. The nephrologist was shocked that the results actually came back showing this because it was kind of a shot in the dark. He referred me to a vascular surgeon to follow up with. The vascular surgeon pretty much blew me off and dismissed the idea. The thing is I FEEL it in this area -- there is a tremendous amount of pressure in left upper quadrant and left lower flank area, especailly when I get up in the morning. When I get up and all my POTS nonsense starts -- I am compelled to squeeze or put pressure on that area. I will just take my hand and squeeze there and it helps the sensation in my chest. For me this was another dead end, but I say go down the list of all possible causes and investigate them one by one.

AM cortisol? I know there are certain hours they test between -- maybe it has something to do with that? Just a thought.

Hi Maggie, I read your post, and it made me giggle. Not in a bad way, but of course this has happened to me too! It isn't really the problem of the heart, or that you didn't push the cart, or drive in that awful cart, that beeps when you go in reverse, REALLY, wide load beeping, give me a break, what is with the beeping. This is really about being a very young woman in the prime of her life growing her family, wanting to be NORMAL, and trying to be as much as possible. Then in a everyday moment, "that everyone else does", we are reminded that OOPS, not you lady. I myself am very stubborn. My family always says drive the cart, don't go shopping, we will do it. But, we want to have our lives back. Be in control. And when we aren't, WE GET MAD!!! So rant and rave, and know that you are not alone. Someone like me is listening, and feeling the same. But remember, LAUGH, out loud if you have to. For the day brings us many great moments too. Just look at your beautiful babies, and all the silly things they do. Have a awesome day Maggie, Thank you for reminding me, that I am not alone. Kathleen Oh my God Kathleen, yes, yes a thousand times YES. You are exactly right, you said it so well, you desrcibed exactly how I feel and I'll bet how so many of us feel. Your response gave me goosebumps and made me laugh and made me want to cry... I want to be in control again, to have my life back. This disease has robbed me of most of my twenties and now at almost 38, has taken my 30's too. Thank god for my two little children -- I love them so much and they have given me so much joy, but I want to enjoy them MORE and be able to give them more. I so hope a cure is possible.

I have noticed this too. I have been waking up between 4 and 5am this whole past week when normally I wake up around 7 or 8. I do feel less Potsy -- a bit less dizzy and more focused at 4 or 5am. I force myself to go back to sleep however because I would be way too tired to function all day if I actually got up that early -- and then I feel worse on the next waking. There is something about those early wakenings that feel more natural to my body than the usual way I wake up, like a nice normal transition from sleep to awake. Normally when I wake up I feel my heart working very hard, my chest squeezing, my head so dizzy and groggy and then I stumble down the stairs in an almost drunken stupor desperate to get some coffee in me to relieve the weirdness in my head. Not sure if this is similar to what you are experiencing?

Yes, it is for me as you all have described EXACTLY. I do think it has to do with an inner ear problem. I am wondering if POTS is caused by an inner ear problem since SO many of us have ear/inner ear/vestibular problems. There is some connection between the vestibular system and autonomic nervous system -- too foggy right now to be more coherent about this. I wish someone could look into this connection more. (i can't in my present state).

I just keep seeing more and more people here diagnosed with EDS and wondered if I could have it. I don't really understand what it is, what the symptoms are? besides hypermobility so I am not sure I could justify going to a Dr. and asking to be checked for it without having that symptom. I am always interested in getting to the "root cause" of my POTS. I keep seeing three things here on the site-- EDS, Mitochondrial Disease and Mast Cell disorder -- but can I go to a Dr. and say I have POTS -- check me for these other things because there seems to be a relationship? And what type of Dr. do you go to for these things. The Dr's I have seen don't seem to know much about much!

Do you have to be hyperflexible to have EDS -- if you aren't, is it possible to still have it?

"But the outlook for their recovery is "excellent" in about 80 percent of the cases, he said. "When you get through the teenage years, it resolves. After a year or two or three, they live happily ever after." " YEAH RIGHT.....

K, thanks.

People just don't get it ....or don't listen.... or forget....... or worst of all just don't believe us.

The link isn't working and I would love to see this website. Is it just me it's not working for?

I can completely relate. When my crazy nightmare began in 2005 I thought whatever it was would surely kill me. The severity of the symptoms those first few months was so scary --- it had a feeling all its own. My heart was racing out of control, I was sweating from my armpits and palms, terrible adrenal like rushes of heat up and down my body, didn't sleep for 12 days, couldn't eat, asthma like attacks, my arm and face kept turning completely white and a million other horrifying symptoms. They were never able to diagnose me even though I made them hospitalize me to figure it out. After a few days they sent me home and I had NO answers. I would have gladly taken death over what was happening to me. I am assuming this was the beginning of the POTS, but I can't be sure. It was so scary, so terrifying... I am so afraid that whatever the heck that was is still inside me and can return someday... and I still want to know WHAT WAS THAT??? I'm sorry to go on about myself -- my point in writing you is to say, Yes, I completely understand wanting to know what has caused all of this: 1) just for curiosity sake and 2) to be certain it won't come back. The more time that passes from the horrible events of 2005/06, the more reassured I am that I am most likely in the clear, but I will never stop searching for an answer as to what that was all about... I just need to know. Plus I think that was a more exagerated version of what I go through now (to a lesser extent) on a daily basis. So there may be clues there. I don't know if you are the type that can be happy you are feeling better and move on.... if you are, maybe you should. We really have no control anyway. I think the more time passes, the more confident you will feel about things. For me -- I want answers.

OK, I don't know if i spelled that right. Anyway, does anyone else get these? I have them under my fingernails and sometimes toenails quite frequently. They began when my POTS "crisis" began -- the adrenaline rushes, racing heart, sweating etc., plus I broke out in petechiae all over my body and started getting splinter hemmorages. When I looked them up, I find endocarditis (which I don't have) and vasculitis which I don't think? I have. Just wondering if this is a POTS thing? Anyone else get them?

Morgen: Oh ok, I get it. I recently had inner ear studies done that showed nystagmus and inner ear (saccule i think) disorder. I keep wondering if the POTS is related to all of this because I read somehow the vestibular system helps regulate blood pressure and other autonomic stuff. I am surpised there isn't more info about this. Do you think your inner ear problem and POTS are related?

Morgen: What is "utricle" damage? This is one I haven't heard of. Is it part of the ear or eye? What do you mean by your good eye? Thanks.

I had blood flow to the brain checked via ultrasound and they found no problem... however, it was a laying down study. Would love to know about blood flow to the brain while standing -- gotta see if there is a Dr. who can do this.

oops double post and dont know how to delete.

Yes this is my worst symptom, but I don't know if I have the same kind of dizziness other POTS people talk about. Mine is a constant fog in my head-- like I am slightly drunk all the time and when I am at my worst almost feel delirious. There is a constant pressure in my head and ears, feels like I can't see, even though my vision tests fine, my eyes don't feel right. It's very hard for me to read. Things don't look "blurry" but more hazy. I feel off balance when standing - sometimes like I am swaying. I have cognitive problems -- at times severe (well, feels that way even though people say I seem fine). I also having dizziness when going from bending to standing, but this is a different feeling. Laying down helps sometimes. It's just the worst feeling in the world and if I could get rid of this one symptom, I could deal with the rest. I have gone the ENT (neuro-otology) route and was diagnosed with "borderline" Meniere's by one Dr, Hydrops by another. I do wonder if there is a vestibular connection with POTS. I think there is an article or two that makes this link. I posted a poll a while back and A LOT of people responded that they have ear problems. The irony with ear diagnoses however-- the treatment for those ear disorders is to eliminate salt (as much as possible), even take diuretics. The main treatment for POTS? Load up on salt and fluid. I give up. Do others feel like I described or is it more a true spinning type of dizzy? I am not sure if my type of dizzy is from the POTS or the inner ear problems.

I was just gonna post about this. I have had a horrific week. I have been sooo dizzy. It has been HOT here in NJ -- like SUPER hot and humid. I feel really weird with lots of pressure in my head and the back of my neck. I am not just dizzy though -- I feel confused. I am having a really hard time focusing and thinking. My cat ran out the door and both my children are yelling "the cat, the cat" and I am just looking at her walking down the back deck like oh, duh.... and then it hit me GET THE CAT. I was playing yatzee with my son and was struggling so bad to do very simple math -- he's 6 and I'm asking him, uh what's 6 plus 8. OMG. I just feel OUT THERE -- I can't think or make simple decisions. I feel drugged. On Father's Day I was so upset and disheartened by this turn for the worse all I could was collapse on the couch and cry. IS it because of the heat???

YES, where can this test be done? My absolute worst symptom is brain fog/cognitive as well. It would be nice to know WHY and even better to actually have a test that proves it.

Dana: What was making your hair fall out? Mine has become so thin over the years with this illness. Is it related to POTS? I don't want to single you out here, but this is where I am much different. I will NEVER accept this as my life because this is not who I am. A few years ago the hair on the left side of my head had completely fallen out and I went to a forum to get some ideas on what to do about it. They said the same thing as you, to accept the fact that your hair is gone forever. No that wasn't an option for me and I left the group not long after that. Well I started researching and eventually I found the cause of my hair loss and it's all grown back. If I had just accepted it, then I'd probably be wearing a wig now.

Dana-- If you were hyperparathyroid, your blood calcium would be HIGH right? So if it is not, it is OK to take Vitamin D, right? I would assume Dr's are checking calcium (which is a more standard test) if they are going out of their way to check Vitamin D... (at least I would hope so).

Just got my results back and my Vit. D level is at 19. The Dr. said to take 2000mg a day, but this seems like a lot? I am taking 1000 -- not sure if this is enough, but I read that TOO much vitamin D can cause problems too (and I don't need more problems!). What amount have your Dr's recommended?

OK, this is something I noticed too. I never thought in a million years anyone else would mention this too because it IS so weird. I have found that if I cry some of the dizziness calms down. I looked it up a long time ago and I think when you cry there are certain natural steroids that are released... maybe this is what helps. OR for me, since I have ear problems, I thought maybe the crying which makes you kind of stuffy and then you blow your nose was helping getting rid of extra mucous, helping to clear the ears and helping the dizziness. It IS interesting.