heathmcev

Hi all,

Sleep is such an issue for me - as it seems to be for many of us. Insomnia and night sweats among other things. Dr Oz mentioned this sleepwear called Goodnighties today on his show. Their website (goodnighties.com) says:

"The patented technology (called IonX) used to make this amazing fabric has been used for years by professional athletes to help restore strained muscles. The ionizaton stimulates blood flow to tired muscles to then promote a more restful sleep. Additioanlly Goodnighties moisture-wicks to keep your temperature more even and it is anti-microbial to resist odors."

Anyone tried it? Does it really do what they say? The idea of anything stimulating blood flow *sounds* good...

Thx! - dizzyde

Hi peregrine,

I'm on, or have been on, everything you've listing. I also get the feelings of detachment at times, and associate them with pots as I only seem to feel like that when upright. It happens to me in both quiet and stimulated environments. Just as a point of interest, I'm going off lamictal in the next week or 2 for the first time since 2006...just finished weaning down. I'll let you know if I experience any change in detachment feelings once it's cleared my system, although I doubt it plays a part. You never know tho!!

Dizzyde

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Ditto katybug!! I was going 24/7 in a very demanding job. Was also in the best physical shape of my life - working out with a trainer. I pushed and pushed through symptoms for years before I couldn't push anymore.

-Dizzyde

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Thanks so much katybug! Both of those were really helpful. Most of what I've found so far on VGKC-specific searches were not in relation to autonomic issues specifically, but cancer type illnesses. A few had very cursory passing mentions of autonomic dysfunction... just nothing that actually went further than that. Seems I need to read a bit more about general ion channels to get the big picture.

Wish my brain-fogged head would just stretch enough to wrap around all this new info - feel like I have to read everything twice this week!!! Lol

Dizzyde

My POTS neuro has suggested biofeedback to me in the past as a good way to help control heart rate and BP. He said any well-trained biofeedback practitioner would be fine (iow they don't need to know about POTS if you can explain the end-game to them). What dani said about needing the HR to increase BP makes sense... I tend to have very low BP, so my racing HR is really a compensatory mechanism. Without that (like when I've been on BBs to lower HR) I get closer to passing out... sooo, if biofeedback could teach me to raise my BP (without increasing any stress response!) that would be FAB!

I agree that anyone who offers a "cure" is suspect... we are too diverse a community to be grouped into one catch-all "fix".

I just got the results from my paraneoplastic / Autoimmune Dysautonomia panel from Mayo. My neuro called and said that my potassium channel antibodies were slightly elevated. From looking at the mayo's page on the testing (http://www.mayomedicallaboratories.com/test-catalog/Overview/89904) I believe he is referring to the VGKC - or Neuronal Voltage-Gated Potassium Channel Complex Autoantibody Serum. But what does that acually mean?? Googling it gave me a few clues but most of it was way over my brain-fogged head (really can't think straight at the moment). I couldn't find previous discussion on dinet either.

My neuro didn't give me any real info - just said he is not rushing to any diagnoses. He wants to retest it in a few months and see if it's still elevated - and that we'll discuss it at our upcoming appointment in 2 1/2 weeks. In the meantime, I want to learn enough about it be able to ask him the right questions when I see him.

Just wondering if anyone out there has gotten a similar result and has some information.

dizzyde

Fascinating Issie. And many of us are on meds like cymbalta to "help" various symptoms but I believe it boosts dopamine as well. I wonder how many of us with these sensory issues are also on meds that boost D?

Dizzyde

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I asked a cardio PA and she said most people are in the 60s-80s resting and probably wouldn't increase more than 10 or so points moving around the house or doing basic things. She said its not normal to be tachy just walking around like we are.

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Me too! I'll feel terrible and think my BP must be low, only to take it and find out its normal. Dr Khurana, my pots neuro said he sees this in a lot of his patients. He'll see that my vitals are holding steady standing - yet see that I am weak and feel ready to collapse... He just shakes his head and says it confirms that the vitals aren't telling the whole story. Far from an answer - but it helps me to know that at least a doctor acknowledges that this is the case with us. Wish we knew more.

Dizzyde

Wow. This is all fascinating Marti - what a work up you're getting. You must be exhausted! Hang I there.

dizzyde

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You should not be enclosed for the blood volume test - I was just lying on a hospital bed.

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Rama - do you have a link to more info regarding sensory challenges and vagal withdrawal, as well as the CNS theory? Id really like to learn more. also, what herbs have you found best for this particular set of symptoms?

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I had this test done shortly after I was dx'd with Pots (at my local hospital's nuclear med dept, not CC). This will be very "laymen's terms" but its what i can remember! I was lying down the whole time. The nurse did an IV & took a number of blood samples. Then he injected radioactive isotopes thru the IV, which we had to let circulate (I lay there and watched tv). Then he took more blood at various intervals. Overall I counted about 20 vials of blood taken. Definitely felt wonky afterward, and had to stop in the cafeteria for juice & a snack (was new to pots & wasn't carrying those things yet!). Also highly recommend a driver as you may be tired. I had no reaction to the injection or otherwise, and since my test showed low blood volume, that's probably why I was so beat afterward. All in all I didn't find it too uncomfortable. Good luck with your test! Hope it gives you some more info

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I used to be able to handle anything - lived in manhattan & worked at a music channel in Times Square - there was music in the hallways, tvs on in every office blasting music videos, sirens, honking, etc 24/7. Now with POTS I can't seem to handle anything. A few years after becoming sick I started getting noise intolerance - couldn't handle CNN or loud music - anything with a lot of constant "chatter" feels like my brain's going into overload.

Then came light problems - Target and the grocery store are like the "perfect storm" for my symptoms! It's awful! I use sunglasses and a bball hat as my neuro-ENT suggests but they really don't help much. I get dizzy, nauseous, feel like I'm floating... it's terrible. I find going and sitting in a fitting room for a few minutes helps calm things temporarily.

Cars are also tough - all of the movement passing by, rocking of the car, stopping/starting are the worst! I get extremely nauseous and dizzy. Sometimes driving is easier than being a passenger but even then I can have the same problems.

Do any of you get a weird "visual" dizziness in flourscent lighting - like your eyes & brain aren't perceiving things at the same rate, so your vision seems to be choppy? I was talking with someone else here about that recently - and we both get a "shifting" or "swooshing" sensation behind the eyes at the same time this visual dizziness is happening. Just wondering how many of us have it.

Has anyone had a doctor tell them this is normal dysautonomia or POTS stuff? My POTS specialist/neuro said he sent another of his pts with this to Vandy and they didn't have anything to offer. That's frustrating. I wish they'd get going researching this side of things...

alex74alex - I also try to get the bicep cuff on as tightly as possible and still get the "E"... but my doctors offices also have trouble taking my reading manually when I stand. The nurses alwasys say "you're here in front of me breathing, so I know there must be a BP in there somewhere". lol!

hholmes13 - it IS annoying - I really want to know what's happening with my body too. Oh well. I also get the irregular heart beat icon on my monitor every now & then - usually just due to a palpitation occuring during the monitoring process.

I have an Omron that has matched up almost exactly with dr office readings several times. My only issue with it is that I get loads of error readings when I try to get standing measurements. The lowest reading I've gotten on it is 85/58... Would love to find an at-home monitor that works for low BP... Does one exist?

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My doctors wanted me on 180mg extended release but I had such bad GI side effects I couldn't tolerate it. I started from scratch with 1/4 of a 60 mg pill 1x/day and slowly worked up to twice a day until the nausea eased and I felt some symptom relief (mostly that I didn't feel like I was going to pass out on standing). That ended up being 60mg for a while. Now I need 120mg (split between morning & afternoon doses). I increase & decrease as needed, but I ended up needing less than the docs said. So take it slow... The side effects should pass and hopefully it will do you some good! good luck with it.

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Me too! But I have to say my hands are way worse than my feet. They are always frozen & doing things w gloves on is hard (the fingerless ones are pointless since its my fingers that are so cold). I don't know what to do either - thinking of it as annoying but not debilitating like other symptoms. Wish I had advice...

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That's great news!! Where exactly is he located? I'm east coast & always interested in new resources.

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I just called Mayo Labs and was told no fasting was neccessary for the Autoimmune Dysautonomia Eval test. She also said meds should be fine in general, but without knowing my list I needed to refer to my own doctor (which is fair). I'm fairly certain my neuro would have said something, so I'll just go for it.

Peregrine - let me know how it goes & when you'll get results back! I'm going to try and remember to ask how long results will take to come in

Glad you brought this test up - I'm having blood drawn for it Monday & sent to mayo. Was it recommended for you to go off any meds or fast for this blood work? I'd hope my neuro would have mentioned this if necessary but he tends not to and I forgot to ask...

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I just stopped propranolol because while it greatly improved my tachycardia, it dropped my BP so low I was completely lethargic & couldn't get off the couch/out of bed. I tried it for 4 months without bp improvement, and couldn't lower the dose as I was on the lowest already. I ended up having to choose - and now having been off it just a week, I have more energy with the improved BP even though my tachycardia's back. I like the idea of trying out different BBs - maybe the one you're on isn't right for your body.

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Gradual onset which seems to be mildy progressive.

Mine started I believe with stress-related GI issues around 13 y/o (dx'd as IBS as a teen), then progressed into other symptoms into my 20s. By 27 I was getting pretty sick; by 30 stopped working full-time. Now 36 and a lot worse than even 2 yrs ago. I have to believe it will improve someday (soon)...

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When you're feeling down, have zero energy, and can't leave home to be social or do a fun activity, what do you do at home to lighten your mood?

My go-to things that don't take active energy are skyping with a friend who I know gets my situation (or can at least distract me), and playing with my dog.

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I can totally relate to this topic right now - everything is wearing me out! Feel like all I can do is lie there and watch tv or movies and I'm SO bored! I think knitting would wear me out. I've thought about trying beading. Has anyone gotten into that?

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