heathmcev

I hope you do get some answers! Please keep posting - I have the same difficulties and haven't had luck with ENTs I've seen. There is definitely a connection between vestibular & ANS - why else would so many of us have visual & vertigo issues! I'm looking fwd to hearing about you experience...

Count me in. Sometimes I think maybe it's the meds (esp the fuzziness)... but it's just as likely POTS. I have lots of coat hanger pain and think when those muscles tighten it goes right up into my occipitals and that's when the headaches really get dug in for weeks on end. Osteopathic manipulation *really* helps me when nothing else can touch them... Hope things ease up for you a bit... hang in there.

It helps my orthostatic dizziness (in combo with mestinon). I still have OH but it's now limited to my most POTSy days and not as constant as before. Any improvement is good! I was worried about it raising my BP too much after reading posts on here, and so raised it very slowly - but I was fine at .2mg and only lowered to .1mg when I had to start hydrocortisone for central adrenal insufficiency (their effects overlap a bit). It hasn't helped my fatigue, but at least I haven't had any bad sfx. If you try it, I'd still recommend starting it very slowly and working your way up to ensure your BP doesn't go up too much... since we are all so different. Best of luck!!

I'm always in the 97s too. And always cold. Have just chalked it up to the ans dysfunction but would love to know if it means anything more. It also makes me wonder if we have a different fever temp (if it's 99.5 for normal folks what is it for us?) - which may sound odd, but my doc told me high fevers can be dangerous in POTS (I'm guessing because of our bad thermo regulation).

I'm gonna go out on a limb and guess that you were dx'd by a cardiologist? I was told the same thing by one who was so focued on heart issues he could understand how any other issues were related. I'm in Wilmington, DE and see a pots neurologist in Baltimore - Ramesh Khurana. Have to have a family member drive me but it's worth it for me. I know there's a guy in Media but can't think of his name (Goodkin??) - hopefully one of his patients will jump on this... best of luck with getting everything sorted out

Who would be able to access it? Couldn't doctors? If so I'll just ask one...

I'm sorry about your friend as well as Kay's new dx. All I have to add about experience with anesthesia is that when I came out of it I was absolutely freezing!! I know this is common, but my reaction was extreme. My teeth were chattering & my body shivering violently for almost 2 hours - it was crazy. Must be related to our body temps being wacky & overly reactive. If Kay tends to get cold, I recommend taking warm layers and a blanket for her to cuddle up in post-recovery. Otherwise my BP & HR were fine. Best of luck!!

Dani, Here's the article I mentioned before - "Autonomic Dysfunction in Patients with Vertigo". I posted it recently on another dizziness thread, but I think it's worth re-posting. I've emailed the author, who's in Japan, and am going to ask my sister-in-law to translate it into Japanese and resend it for me, hoping the doctor may be more likely to respond in his native language... we shall see. http://www.med.or.jp/english/pdf/2006_04/153_157.pdf

Count me in! Awful nausea & dizziness when I read. Luckily not all the time but it seems more & more lately. All I can look at are magazines and invariably after a few pages I give up. There are so many novels I want to be reading! Stace - I take Deplin, made by the same lab, and my dr has given me cerefolin before when he's been out of deplin samples. I had no idea cerefolin was for memory... how cool!! maybe he'll let me switch back to test out the memory part. I believe they're both very "clean" supplements & won't mess with other meds.

Sorry - I hit the post button by mistake! Oops. Was trying to say that I just came off a 9-day vertigo nightmare. It's so awful to not have your body know which end is up its horrible and I hope yours clears up soon. The exercises you all are talking about are Brandt-Daroffs. They are helpful if you have BPPV but if it's something else and not out-of-place crystals then they will just make you dizzy. Definitely ask for vestibular testing (ECOG, VEMP, ENG) to rule out an inner ear issue. I've had all these tests come up "within normal range" and had unsuccessful Vestibular PT - and am still seeking an answer for my vertigo. Hopefully that won't happen to you. Currently my neuro-ENT is treating it as Migraine with Vertigo Component but there is also a paper by a doctor in Japan about vertigo in dysautonomia patients. I can't post the link now as I'm typing from my phone but will try to post it tomorrow. Take good care of yourself and keep looking straight ahead :/

Hi Dani, Im SO sorry you are going thru this. i too have horrible spinning & rocking vertigo in addition to daily dizziness. Have had several episodes since last fall - each lasting days. In fact I'm just on the end of my longest epis The exercises you are talking about ate called Brandt-Daroff exercises. They help if you have Benign Positional Vertigo (BPPV)

I just remembered 1 other thing. I always travel with the little sachets of G2 powder so I can dump one in bottled water I buy after security in the airport... Gotta stay hydrated on the flight!! And of course aisle seats are helpful if that makes you have to pee every 5 mins

Hi Brenda, I know many people here have written about it making them feel horrible. I am lucky in that I can handle it, it just wears me out a bit - especially with luggage and walking through the airports (sounds like your daughter may benefit from a wheelchair there). If i leave recovery time after the flight and dont try to do much afterwards i'm ok. The worst thing that happened was before i was diagnosed and was living overseas... I was doing a lot of long-haul flights back to the US from Europe and used to get bad chest pains. I kept thinking "you're only 28- you cant be having a heart attack!" it was mostly pressure in my chest and shortness of breath, but if I focused on my breathing and put soft music on my headphones I wouldn't panic. Having said all that - the last few flights I've taken domestically have been fine with the exception of some shortness of breath. Plus, now knowing it's POTS, and having that understanding diminishes the disconcerting nature of any symptoms. Good luck with your flight! It sounds like you're overdo for a nice break :-)

My BP monitor was getting errors too the other morning when I felt so bad and knew my numbers were really low. Its a shame since it would be nice to at least be able to document it for our Drs if nothing else. But yes - I believe it's all part of this condition. I never know what to do either to relieve it since I'm also on all the meds that are supposed to be helping. Drinking water is probably hugely helpful. Also meditative breathing to center your mind so you worry a bit less... easier said than done though when you're in the thick of it. When do you see your pots dr next? Keep good records of all of your BP & HR readings (even the ones that are so low the monitor reads EE) with date & time, which you probably are already doing. Take care of yourself

I would love to know about this too. I am also Hyperadrenergic with hypovolemia & orthostatic hypotension. I asked my pots specialist how hyper pots & OH can happen together and he just said "it's more complicated than that"... he didn't bite when I pressed further for an answer...

Sounds easy enough - and how great if it helps! Are you standing or sitting when you're propped up against the corner? I'd like to try this. thanks for sharing!

Dr Ramesh Khurana at Union Memorial is chief of neurology as well as an autonomic specialist. He treats many people here. I don't know if he takes adolescents but it's worth a call - & maybe tell his assistant that you are desperate/ Dr Rowe's full... I know that Dr Rowe recommends him for adults. I've also heard good things about a Dr Abdullah (sp?) in Virginia. I believe he treats children. Best of luck to you!!!!

Yay! I'm so glad it struck a chord with you too. Doesnt it just make sense?? I found it by googling Autonomic Dysfunction + Vertigo. I did email the author... Will definitely post if I hear from him/her! heather

Hi all, I'm bringing this post back from last month because i found something interesting. I deal with most of the symptoms above and am in the middle of a bad vertigo episode now (day 5... *sigh*). Since I can't move well or turn my head a lot, doing research on the net is my entertainment! Anyway, I found this article from Dr Takeda in Japan... It's fascinating in that it's the first meaningful thing I've found that makes a real connection between ANS dysfunction & vertigo... http://www.med.or.jp/english/pdf/2006_04/153_157.pdf I'm currently being treated as if my vertigo is migraine-related, but so far none of the treatments have helped & 3 of my other specialists aren't sold on that dx (but don't necessarily have anything new to add beyond saying "maybe it's just the pots..."). I emailed Dr Takeda - we'll see if I hear back from him!! Heather

I should have added - I am going to ask about this as well... if things don't progress, it's worth a go!

Thanks for all of the great suggestions. Reen, that diagram was great! So helpful and it totally made sense. I did get in for a PT evaluation today, and she believes the problem is in my foot not back (oh well - didn't hurt to try!). Trying some basic PT & electrical stim for a few weeks, then if I'm not better she's going to get my Dr to order an MRI & nerve conduction testing for neuropathy. Fingers crossed it all heals up before I have to go that route...

My psychiatrist had exactly the same reaction as you all to generic vs. brand. He said particularly with this compound, the generic packs much more of a punch than the generic, and that it's likely one could do just as well on a smaller dose if using the brand name.

Hi everyone, I'm worried about what's going on with the nerves in my left leg, and trying to figure out if it's just yet another POTS symptom or something else entirely. Last summer I started having a shooting pain on the bottom of my left big toe, which then stopped and turned into numbness & tingling (which continues today). I just tried to ignore it. Then in December the same thing began happening on top of the same foot - shooting pain and burning sensation followed by numbness & tingling. These symptoms continue and the whole area's very sensitive to touch. In the last 2 weeks the shooting pain has extended out into the top of my big toe. I went to a podiatrist this week who said typically it would be a classic compression reaction from a shoe or boot, but he ruled that out following a discussion of my footwear. He also said with dysautonomia, it could be that my body's slow to heal from some sort of trauma I may not remember. He's starting me on PT this week for electrical stimulation. THEN... just 3 days ago I started having shooting/burning pain on the outside of my left knee which is now sensitive to touch and kills when I kneel. So clearly it's affecting more than just my foot. Does anyone else experience this? I'm worried it's some sort of neuropathy, but don't fully understand what that means. Who would I see... my POTS neuro? I did have a thermoregulatory sweat test 1 1/2 yrs ago that was normal... but things can change in that time, so I just don't know. I hate feeling like every little thing could "be something", but I've ignored this for 5 months now and feel like it's only progressing. Thanks!

Nelgkel - thanks for that suggestion. I am on the generic. I'll add that to my growing list of questions for my dr next week!

hey godsgal! I just pm'd you