heathmcev

Hey abetterjulie, I've had the same sweat test w/ the same Dr you see... I'll pm you. While it's not exactly fun, it's nothing to get worried about. No needles or pain... just discomfort from the heat. And you'll definitely need someone to drive you cause you will be tired afterward. Look for my message... dizzyde

Fascinating. It wouldn't surprise me. So by that theory, with a 36-hr half-life it should take 10.5 days for klonopin to get up & working at full effect in someone's system. I just figured out that I'm at 27 days at .25mg. Seeing my prescribing dr next week! Thanks everyone... what would I do without you??

Wow. I haven't come close to seeing relief... Sounds like im not taking enough. My Rx says to go up to.5 2x/day. didn't know it had such a short 1/2-life. thanks so much guys

Thanks everyone for responding to my concerns. I feel a bit better about taking it today, although I am going to bring up the dependence & tolerance issues with my doctor when I see him. Clearly I need something for my dizziness, and would rather keep it at as small a dose as possible. I just wish doctors would be more forthcoming about these potential issues with patients before we get started on meds! A few of my Drs are great that way - but the majority are afraid they'll freak us out. That's where we as a group are different - seems like most of us have been through the ringer with meds and would rather be informed. firewatcher - thanks so much for all of the information and thoughtfulness about differentiating between the meanings of these terms we all throw around. I've never had an addiction issue through all of the meds I've had to trial, but have had some horrible withdrawals (mostly anti-depressants) because of my body's chemical dependence that seems inevitable and certainly out of my control. Out of curiosity... how long has it taken you all to notice a difference in your symptoms after starting klonopin? This is week 3 for me and i'm still dizzy all the time. thx

Reading all of this is freaking me out a bit. I just started klonopin 2 wks ago at .25/night and just raised today to 3/4 of a .5 pill. I'm supposed to have been increasing it all along but am going slow because of my sensitivity. Now reading this makes me want to stop before I get any further. I have been on & off of 25 meds in 5 1/2 years because I can never tolerate what I'm prescribed and the *last* thing I think I can handle is yet another med that may screw me up for years to come. I'm taking it for dizziness from migraine and the Dr doesn't feel he has any other options with me since I can't tolerate gabapentin & topomax scares me (bad side effects). He doesn't want to do cardiac med options b/c of the POTS. What a choice to make... debilitating dizziness or addiction!

So sorry to hear how awful youve felt! Thats the worst. I had the flu a few winters ago with 104.5 fever & head feeling reading to implode... Its so hard to get thru. Sounds like you've turned a corner thank goodness I've gotten the flu shot every year with my POTS neuro's blessing. He even said it was fine this year with the H1N1 mixed in (last year he told me not to get that one). I was a bit off for a day or two, but nbd. Definitely smart to try & pick a "good" day if possible!

Ive been on it for just 5 days now and have been SO spaced out, loopy & feeling drunk. Someone here told me to give it 4-7 days. Thing is - I'm only taking 100mg! I'm supposed to be higher than that by now per the Rx, but am super-sensitive like many here. I am trying to hang in but am struggling to believe this is the right med for me! I hate being rendered useless from meds... POTS does a good enough job of that!

Thanks thankful... very helpful info. i felt drunk this morning, but i'll hang in there

I'm just starting gabapentin - just took my first one last night (100mg) - and feel totally loopy today. Could just be the POTS, but I'm wondering how long it took your body to get used to it. For those who experienced increased dizziness on it - did it go away after a werk or 2? Thanks!

I haven't tried tumeric yet - although I just might after reading this! One warning tho. I just saw my POTS neuro (Dr Khurana) this week and asked him about it -- he said that too much tumeric can cause hallucinations... so maybe low & slow is the way to go?

Hey all, So I discussed this with my osteopath this week (he's board cert'd in internal medicine & has an integrative practice). To his credit, he was the 1st doctor to take *all* of my symptoms seriously and suggest that there could be something wrong with my ANS, which then gave me the push to go get the real dysauto dx. Great guy. Anyway... he feels that this is all yet another way our ANS's are fooling with our bodies, rather than mirgaines w/ vertigo or other inner ear problems. I asked him about how the inner ear & ANS are related, and he said that motion sickness is the perfect example. Why would something like a rocking ship make us nauseous? The brain is sending signals throughout our body telling it to react. He said it goes beyond just our eyes & ears sensing balance. I wish I could explain it as well as he did... Food for thought anyway. On one hand it helps me to think it's all related, rather than yet another additional health problem to tackle. On the other hand... what can we do to improve? I'm working on my PT exercises and hoping to build some sort of tolerance to the over-stimulation issues.

So many of us in the same boat yet so few answers. Seems to be kinda like everything else we're all dealing with, no? So frustrating. Wish someone would study this. It feels to me like just one more way our goofy ANS's are toying with us. Thanks for the article Naomi - i'll google some more with your keywords and read what you sent over the weekend.

Hi kayjay, Thanks for responding! I should have been more specific... sorry. There are so many different ear issues! What I'm talking about is not orthostatic hypotension-style dizziness that is relieved by changing position - but a vestibular dysfunction that may be caused by inner ear nerve problems. The type of thing where the nervous system may be sending the wrong signals to the balance systems, like it does w/ our hearts, digestion, etc. I'm trying to understand the direct or indirect impact the ANS could be having on our balance systems. Like how so many of us get dizzy in the grocery store or any time we're overstimulated. Why are so many of us so easily overstimulated by movement, colors, lights, etc? My PT says that this low tolerance for stimuli overloads the body's ability to deal with and take in everything my environment presents me with. But why? It could all be migraine-related at the end of the day, but I just have to think it's related to dysautonomia more than that.... hmmmm....

Hi lovely POTS folks, Does anyone out there understand any connection the ANS has to the vestibular nerve / inner ear? My instinct says there must be one - especially as so many of us seem to have vestibular issues. It just seems that none of the doctors or physical therapists I'm seeing have much to say on the topic. And everything I'm finding online is just way too complex (the anatomy of the inner ear's just not getting through my thick skull... too brain fogged!). So if anyone can put it out there in layman's terms I'd be grateful! Just as additional info - I have had ENG, ECOG & VEMP tests that were normal for the most part. They said if anything, there's mild under-performance in both sides' superior vestibular nerves which could be causing my disequilibrium, vertigo, motion sickness, etc... but as of now they're leaning toward migraine w/ dizziness... but also admit that they don't really know for sure. Thanks! dizzyde

Hi kayjay, That's so exciting that you're cutting back. I'm envious! I'm currently on cymbalta but have gone through the withdrawal a few times when the docs have been toying with things. I am super sensitive to meds like many on here. We're all so different - and your doctor may have a very different opinion based on how you tend to react - but my psychiatrist said for me to just go cold turkey since slow weaning vs fast wouldn't change the withdrawal symptoms for me. In terms of withdrawal, I experienced a sort of visual dizziness, where if I moved my eyes but kept my head still i'd get dizzy. My psychiatrist says some people get this, but luckily not all... so hopefully you're not like me. It think headaches are common too. It's not fun, so take it slow and remember that there IS an end! I had a good solid week and a 1/2 that was pretty rough. It's like ripping off a band aid - the symptoms will subside. Good luck - and maybe you won't have any trouble at all! fingers crossed

Whoa. This is all overwhelming! lol. Thank you so much caterpilly for your reply. You're a wealth of info and have clearly done your homework - having dealt with the dizziness a lot longer than I have. I feel like I need to digest it all since this is all so new to me. At least we're both actively seeking answers, as I'm sure others are with this weird vestibular thing. It's a little disheartening that my POTS specialist/neurologist doesn't see the connection between the vestibular stuff and POTS... or the cervical problems as well, for that matter. There just has to be a connection. I too have all of the neck issues that so many people write about on here... and those trigger points on my shoulders are always tight. Are they the same points that the weighted vest hits? I'm going to see if my ENT will add the SOT to the script for the other tests I'm having this month. Also going to bring up the weighted best at my PT tomorrow (it'll be my first session, so I'll post what they do with me). *Really* appreciate your help caterpilly! Would love to pm with you as we go to our various dr appointments so we can compare notes & recommendations...

Hi Tara, I'm resurrecting your post because I'm going through something very similar... your description could be about me! I was just doing a search for vertigo and found all of this very helpful. I've been dizzy almost constantly (to varying degrees) since early July. Tried going on & off florinef & mestinon without seeing any effect on the dizziness. Then a month ago today I was in the hospital for my first full-on episode of severe vertigo (major spinning!). The recovery with the standard at-home PT (Brandt-Daroff exercises) helped a bit but didn't take and my second episode hit last weekend. That one wasn't spinning, but more like being on a rocking boat. I was holding onto the walls to keep my balance. The last week I've been dizzy everyday, and today the vertigo/rocking boat feeling has returned. Needless to day I am sick of this. I've been to my POTS neurologist who said he has other POTS patients with a lot of daily dizziness that's unrespnsive to meds, and hasn't found a cause or solution. He said he sent one of them to Vandy and they didn't know what to do with him either - and that I may just have to learn how to live with it (something we POTSies hear way too much, right? grrrrr...). My ENT was more helpful. He thinks all of the dizziness and motion sickness/nausea are connected to migraines with a "multifractional vertigo component". He's sending me for balance system testing (ENG, VEMP & ECOG), to a vestibular physical therapist (I'm going to someone at a hospital, so i hope that means they're a certified vest PT, as you meantioned. i'll ask)... and finally to a neurologist to address the migraines properly. I'm also going to my eye doctor this week and will ask him about a referral to a neurological opthamologist - that was a very helpful suggestion. I'm just getting started with all of this and don't have a definitive dx yet. Have any of your doctors mentioned a migraine component in your case? I do have painful migraines every now & then, but apparently the dizziness and nausea/motion sickness may be migraines as well - just wthout pain. Now that it's been a few months, how are your symptoms? Have they subsided at all? I really hope so! Please let me know how you're doing. Also - was it a neurologist who got this treatment plan going for you? Did he have specific knowledge of POTS or was he just a regular neuro? Hope you're feeling well and everything you're trying is paying off... best, dzzyde

This is so apropos. I was "going to" shower yesterday and was too exhausted. Decided to wait till this morning... But then woke up at 4:30a with horrific vertigo & a bp of 157/100 and have been in the hospital almost 24 hours now. Am lying here thinking mostly that my hair must look nasty and my face feels greasy because I should have showered last night and couldn't! Lol. We just never know what's around the bend for us, do we?! I hate feeling self conscious. So glad to have people to say this to who get it!

I'm right there with you Jana! I used to shower, wash & blow-dry hair, put on the make up & conact lenses... and hi-maintenance work clothes & heels everyday. Those days are so far gone it's sad. Now I shower every other day and air-dry my hair unless it's freezing out. A pony tail is my friend I live in my sweats & if I have to go out it's shorts & a tank top all summer. I hate the thought of running into someone I know too cause I feel so fat from the florinef. I was also such a social butterfly before all this! Glad I have you all to commiserate with!!

@ Noreen - thanks for getting back to me on that. I will try the gel out - sounds like it would feel good. I am also a big fan of tigger point massage - sometimes it's the only things that can break up those knots. I don't know how you do it with the dystonia. You must have to have a lot of patience. @ Dianne - I have soreness at the back of my head all the time - right in the occipitals. It's kind of nagging, isn't it. No fun. I've never heard of neurological physiotherapy. I wonder where i could find one? Are they typically found in PT clinics? I'm going to ask around to see if anyone knows of one here in Delaware. Cranio sacral is fabulous. I call it my "system reboot" and this is the first time it's not relieved the pain. But you are right that having more angles at the problem is only going to help. I really appreciate both of your great ideas. Now back to the microwave for more neck heat

Thanks Noreen!! please tell me more about the witch hazel gel thing! how do i do it? I have no muscle relaxers and am all about trying anything anti-inflamatory at the moment!! I have a rice neck thing I have been heating and reheating about a thousand times a day. Really appreciate the helpful ideas & commiseration Heather

For the last 5 days my neck & shoulder muscles have been all seized up & really painful... limited range of motion, awful pain just lying still, etc. Like so many people on here I get this every so often - in addition to the usual coat hanger pain, usually 3 or 4 times a year my neck will totally seize up, and I go to my osteopath for manipulation & craniosacral therapy, which open things up, and I start to feel much better. This time it hasn't worked. Every morning this week I've woken up at 5:30 with horrible pain and have to start the heat / stretch routine again until I can get back to the doctor. He actually saw me for 3 treatments this week for this and we have a follow up Tuesday! It's the first time my neck hasn't responded to therapy. The only thing that's changed recently is that I've started up'ing my Mestinon dose. I'm taking very little as it is, but my body's so sensitive to meds that for me it may be a lot. Anyway, my osteopath was telling me that since Mestinon's really meant for myasthenia gravis, which is all about weak muscles, the med makes your muscles fire more. So if mine were already freaking out from stress and a migraine, then more Mestinon may be aggravating the situation. I'm thinking of not taking any Mestinon at all this weekend to see if the pain subsides. There must be something else I can take to safely raise my bp. Have any of you had this happen? I'm just so over the pain and don't know how much longer I can take it. At this point I think I'd rather be dizzy from low bp then in constant neck pain. Grrrr...

Thanks for the laurenshope.com lead - they have nice bracelets. I use medicalert and the lady there recommended I put "hyeradrenergic POTS" (which actually fit!) - if you have the same Dx - they may not know POTS but the Drs should be able to get a clue from hyperadrenergic and google the rest! I also got the basic bracelet with the plaque that has holes on either side. My dad cut off the ugly chain and I beaded my own nice looking bracelet (like the ones on laurenshope.com with the 2 lobster claw ends) for $12 with stuff from AC Moore.

What is a normal body temp fluctuation for a non-POTSy person going from inside to out in this type of heat? Does anyone know?

Hi Casey! I almost passed out in Target last weekend. I managed to find a chair in the in-store Starbucks before I did, but I was very self-conscious in addition to being a bit scared since i was there by myself. I had to sit for almost a half hour - every time i tried to stand things got all grey again. Its hard to not worry about people staring and to just do what your body requires (although clearly our bodies are in charge here! Lol). Stores are the hardest places for us - and for some reason not many have places to sit! This wasn't something I ever even thought about before. I hope you can get the tests you need and figure out what's happening. In the meantime keep water with you & take it slow Best, Dizzyde