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Don't know where I posted it now


Jackie
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I posted asking for prayers that I will get to see this new doctor I found who is a specialist in POTS/NCS but deals primarily with adolescents....occasionally she takes on adults over the age of 25 (I'm 36) and I got the call today that she will see me in April! I am very happy. Even though I have the diagnosis and have Dr. Grubb I feel like I need somebody more involved and I hear this physician is very thorough so between these 2 I will have the best team (and only ones evidently!) in town! Now I just have to get it approved through the insurance. I am just so happy and wanted to announce my good news...it gives me more hope!

By the way, the person in their office I spoke with today said I need to be drinking 300 ounces of fluid a day! I've never heard of that...my goodness I'm lucky if I take in 40 ounces a day. No wonder I feel so bad. Has anybody else had this high of an estimate of fluid intake recommended? Don't know how I'll do it...will have to work my way up. She said it should be about 20 ounces an hour for 16 hours. Is this humanly possible?

Also, these support hose people talk about...are these more than panty hose? Just wondering what people wear and where to find good ones (I'm in Ohio but I do the internet shopping thing too). Have people honestly found that they help? I think I would be more interested in maybe knee-highs at this point to try because full length would be so hot I would think. Hey, I'm open to trying it especially something so simple that could help.

Still dizzy as a bat today but the good news really has lifted my spirits! ;)

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That's great news!! In fact, it's fantastic!! It's always relieving to have a good team of doctors to help you through the hurdles of this illness. I am also seeing a new doc in April who I hope will be able to work hand in hand with my current doctor so that I can give it 100%.

As for the liquid intake, my doc has always told me to take in 90 ounces per day (and that's for a breastfeeding mama who needs a little more fluids)- I cannot imagine 300!! Wow!! I would drown, I'm lucky if I can take in 60-70 per day. I'll be interested to see what others say about that.

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Below are a few links for support hose. The real expensive brand name is JOBST and they come in light, medium and Oh My Goodness How Do You Ever Pull These On!

http://www.supporthosestore.com/

http://healthylegs.com/

http://www.brightlifedirect.com/

http://www.supportplus.com/

http://www.medicalmailorder.com/

Each company also seems to carry a "generic" and other brands of support stockings as well. Try as many as you can afford (they last a long time but they are really quite pricey) to see what brand works best for you.

Doctors usually recommend full leg instead of just knee highs. My personal preference is thigh highs because I hate tight things on my waist.

As for water ... that's a whole lot of drinking. My docs don't push water other than what I do normally. I've tried heavy duty water before and as Futurehope mentioned I flushed out my electrolytes and got much worse. I then tried Gatorade for a year or so and ended up with systemic candida -- I think it was the sugar content.

So now I take salt tablets and drink a moderate amount of water each day. Other folks on the boards drink quite a bit more and it works well for them. Just like pantyhose ... one size doesn't fit all!

Good luck on the new Doc and thanks so much for sharing such good news.

EM

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Guest tearose

Thanks for sharing your good news! Isn't it great when things work out.

I'm really concerned about that water intake, I'm not a medical person but I sure know that something sounds incorrect. Please double check before you start taking in that much. I bet 2oz per hour for 16 hours is more like it!

I'm one of those faithful compression pantyhose people. Yes, yes, yes they do work. It is not easy pulling them on however I feel sooo much better and my heart rate goes down 20bpm! Not bad for a non-medicine treatment in my opinion. And I did try both the knee high and thigh high hose and showed no improvement. They just didn't hold tight or stay put and they felt uncomfortable. In the heat of the summer I managed. (FYI, I also use another compression garment that holds my torso, like the belt the weight lifters use. If you have poolling in your abdomen, this may be suggested for you too.)

Where to buy the items: any good surgical supply store or pharmacies can order them for you. I like the cotton content in the JUZO products, they are a bit more costly but they also last a longer time. JOBST also makes them. I have both. If you want them to work, you must use the firm compression. Talk to the person who fits you for them and between them and your doctor you'll get the right compression.

Take care and do bats really get dizzy? I never knew! Hugs, tearose

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;) I take in about 90 ounces a day at least 60 of that is water but I also drink either tomato juice or v8 in the morning( the sodium levels are high and it seems to help first thing in the morning)I try to limit milk ( it seems to be a trigger for me) Were you dehyrated? Even when I was seriously dehydrated and trying to avoid iv fluids my doc said to drink at least 8 ounces an hour. I'm going to look into those stockings as well and was thinking about excercise shorts for under my clothes for summer. Anyone tried that? My pooling seems to settle in my tummy or at least it feels that way!
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Medical grade support hose are definitely different from store-bought support pantyhose. They do make ones that are much like panty hose--I couldn't deal with the jobst style stockings that only go thigh high; they were uncomfortable and didn't stay put. I may be petite, but my thighs are NOT and boy-oh-boy did they put the squeeze on. My neuro suggested the pantyhose ones. Getting them on can be an adventure--they are very tight. Very. Very. Quite a workout--envision yourself squirming on the floor, couch, wherever, for about 5 minutes. Be sure to plan enough time to get them on right and then rest a few minutes before getting moving in your am routine.

Nina

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I love you guys so much...you make me laugh and that is rare and a very good thing! ;) (swimming for 5 minute to get the stockings on, etc. :) I bet they are hard to get on...I just get a visual of me trying and I fall over laughing. I'd probably have to take a nap afterwards!

The discussion about the thigh highs reminded me of a very funny story (at least to me!). When I was younger in my 20s and not overweight or anything I bought a regular pair of panthose that were thigh high. They were the new thing and I wanted to try them. Well, you see them on the models and they look well so nice. Yea right. I was in the elevator at work and one was loosing its grip and I had to reach under my skirt and pull it back up and in doing so I fully realized actually how grotesque (sp?) they looked on my legs. My legs were not that fat, but my thighs have always been fuller and boy what a sight that was to see....nothing like what they look like on the legs of the models....Like a water balloon with a band wrapped around the middle! Needless to say it was the last time and only time I wore them (mostly for fear I would have an accident and somebody would actually see them...you know how your mother tells you wear clean underwear always beause you never know?) I'm almost peeing my pants laughing remembering this.

I have heard of Jobst stockings and actually worked as temp at their offices in Toledo, Ohio when I was young'n. I don't think they are there anymore. I will check out internet links provided, etc.

I will research and definitely investigate the support hose. Thanks for all who posted with information on types and where to get them!

About the water, I know I will never be able to do 300 ounces...I think I'd do well to shoot for the upper 50s or low 60s. I can barely tolerate water...in fact I live on soda which is very very unhealthy I'm sure (dental wise and otherwise) but now I'm wondering if it has been a good thing because of the sodium content in soda (I haven't done caffeine in about 10 years so I doubt I could handle that). Sometimes I've found in my life that I've craved things later to realize my body probably needed it....like right before I got totally sick and was just having subtle symptoms I craved salty pretzels all day long. The thing that scares me about radically increasing salt intake is what effect it will have on other electrolytes...when I was sick last summer my potassium kept going low. Does sodium push out potassium? I hated taking potassium supplements...they made me sick.

Sorry so long but so funny and thanks all for replying! (To TeaRose...I like the sound of those cotton ones (Juzo). Also, I don't know if bats really get dizzy (doubt it)...I don't know where I got that expression from but I say it all the time! Must be a southern thing I picked up from my parents!

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Just one more note on compression hose....my experience is that it is VERY hard to get them on but darn near IMPOSSIBLE to get them OFF!! I get them stuck at my heel almost every time and the more I tug the more they stay put. The other night I thought I would have to pull them back on just to go to sleep! Also, since they cost the price of gold I try not to tug to0 hard for fear I will put my thumb right through them!!

Ok, a second thing.....just be glad that they have now made them more attractive than a generation ago. I can remember my great grandmother and those ugly beige things and thinking, I hope I never have to wear any of those!

Good luck.

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  • 2 weeks later...

Thanks to everybody who replied and for the info. on the support hose. I would definitely like to try them, but one person mentioned their heart rate went down 20 beats....for me, on atenolol beta blocker, that might not be a good thing right now but I will discuss it with my new doctor I'm getting to see in April. They certainly sound great!

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PEDS is another brand of stockings to try. (+/- $36 - thigh high)

Also, my daughter just spent three days in the hospital. She was told to drink 2-3 liters per day of real fruit juice and/or water. They also told her not to drink too much more than that because it would cause the kidneys to overcompensate and she would lose the fluid she so dearly needs. Definitely check again with the doctor on those instructions.

Hope this helps!

Margaret

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Hi everyone. I just posted this in response to someone else's question about blood pooling in the legs--but it's worth repeating if visitors only read a few conversation threads.

Compression hose are typically covered by health insurance, so if you have insurance, by all means take advantage of it! I believe compression hose fall under the "durable medical goods" category (and yes, they're expensive--60 to 90 bucks, depending on the manufacturer and style).

I've been wearing my Mediven brand (20-30 mg pressure) and I think they're FANTASTIC. Jobst didn't work for me; I'm 5'7", and they only went 1/2 way up my calves. Try em if you're petite, if not, Mediven is for you!) If the pooling is very bad, 30-40 mg is probably better.

Your medical supply store can call your insurance co for you; they'll have to verify coverage anyway. If you go that route, your doctor will have to phone in a prescription.

I had great success with Walgreens Home Medical Center (the name of their medical supply division). Their toll free number is 800-323-2828; they can check your insurance for you before you even bug your doc for a prescription. (The fax number you can give your doc is 800-424-2523.)

Also, you need to have someone measure your calf and ankle when you go to the store (takes two seconds) so you're sure to buy the right size.

I don't know whether wearing them necessarily causes a drop in heart rate--I don't wear a monitor--but they sure do give my legs more energy and the compression facilitates the blood's flow back north. (I'm also doing the salt and fluid thing--an article about POTS by Grubb et al., recommends 2-2 1/2 liters of water a day.)

Good luck--I sure hope this helps someone get socks for free!

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