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Ashelton80

Rapid Weight Loss

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Does anyone experience rapid weight loss when going through a flare? Over the last week my daughter was sick with a viral infection. I had a slight version, but nothing too terrible. Then I had an incident with a tampon (sorry guys) that made me very ill. Figured that out and then two days later I am full blown sinus infection. I am starting to recover from all the icky, but the POTS is so aggravated right now. The result for me is almost 5 lbs of weight loss in the last week in an already underweight body. (112 lbs 5'8'') I have very high sympathetic drive so it does make sense that I just burn through everything I do eat and then more. Anyone have any suggestions on how to keep weight on? It seems like such a vicious cycle. My POTS flares I lose weight, my POTS gets worse because I've lost weight.

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The same thing happened to me before I was diagnosed. My weight went from my usual 103 (5-5") to 97 in 2 days. I was diagnosed with POTS. Got on dr Levine's protocol without meds and gained back the weight over the next three months. Then when I was doing well, a cardiologist who does not know much about POTS told me I didnt have it (since many patients no longer meet the diagnostic criteria after going thru dr levines protocol). So I went off the vey high salt diet I was on and in a few days my weight went back down to 96-97 pounds. This weight loss was clearly volume. My clothes fit the same. Eventually I figured out he was wrong, got back on very high salt diet and florinef and quickly gained back the weight (after being at 97 for 2 months and feeling terrible). In the last two months now that I know what is going on, I have not had any flares. If you have an illness, your body will need more salt and water.

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Thanks. Glad to know I'm not the only one who wastes away. I feel like that is not the norm amongst most people with POTS. I did Levine's protocol too and had good results. I also quit and now I'm back to this place where I feel like my body is spiraling out of control. I know part of mine is volume as well because I have been waking up at night drenched in sweat.

The only time I have gotten over 112 is after soaking in the ocean for 4 days. I got to 116 lbs. Gained 5 lbs in less than a week. I felt the best I have felt in years. So it seems obvious that the recurring theme here is high volume equals more lbs on the scale and low volume equals rapid weight loss. I feel like I'm trying to stop a train from derailing right now. It is a horrible feeling! Especially when just a few short months ago I was doing really well.

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The same thing happened to me before I was diagnosed. My weight went from my usual 103 (5-5") to 97 in 2 days. I was diagnosed with POTS. Got on dr Levine's protocol without meds and gained back the weight over the next three months. Then when I was doing well, a cardiologist who does not know much about POTS told me I didnt have it (since many patients no longer meet the diagnostic criteria after going thru dr levines protocol). So I went off the vey high salt diet I was on and in a few days my weight went back down to 96-97 pounds. This weight loss was clearly volume. My clothes fit the same. Eventually I figured out he was wrong, got back on very high salt diet and florinef and quickly gained back the weight (after being at 97 for 2 months and feeling terrible). In the last two months now that I know what is going on, I have not had any flares. If you have an illness, your body will need more salt and water.

Oh and how is the florinef working out for you? I've never really given it a good try.

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I've lost 10 pounds in the last year...after treatment for 6 months, I'm about the same. I thought I would gain some back, but I haven't. I gained some through menopause without meds, up to 120, I'm my best at 112, but I only weigh 104. I'm 5' 5''. I'm below the weight I was when I was a young adult , 25, newly married. That was 30 years ago!! You would think I would have gained being on a beta blocker, Bystolic. That's what I thought, anyway, but I'm nauseated all the time, so that is a factor, and sometimes have some GI issues...

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I am 5'7" and went from 120 to 95 in a couple months. i am gaining weight back with maltodextrine added to my almond milk and ultrameal 360 hypoallergenic!!! doesnt taste the greatest so i usually drink it when i go thru my stages of not being able to taste much. Normally i have overactive taste or something. but now I AM UP TO 105!!!!

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Ashelton80: florinef clearly helps me...I could tell a difference within 24 hrs, but it wasn't until I increased my Na with NaCl tabs that I really did better. I was taking 0.2 mg daily. Recently I was able to gradually cut it down to 0.15 mg daily, but got worse when I tried to cut back more. I bet you would have a good response too since you also seem to have a significant component of hypovolemia. Let me know if you try it!

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Ashelton80: florinef clearly helps me...I could tell a difference within 24 hrs, but it wasn't until I increased my Na with NaCl tabs that I really did better. I was taking 0.2 mg daily. Recently I was able to gradually cut it down to 0.15 mg daily, but got worse when I tried to cut back more. I bet you would have a good response too since you also seem to have a significant component of hypovolemia. Let me know if you try it!

I will let you know if I decide to try it! It is definitely starting to be apparent that I have major hypovolemia (prob why exercise helps so much). I have really never done the salt tabs either. I just always hear mixed reviews about them. I may try the salt tabs and licorice root first before the Florinef.

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Ashelton80: I also avoided salt tabs until 2-3 months ago due to Dr Levine's recommendation in the protocol info. But I went ahead and tried them when I read other specialists do recommend them, eg Mayo and i believe Dr Grubb. I have no problems with them, rather they have made my life much easier diet-wise because I know I need a very high Na diet and for me at least it was hard to consistently get that much in my diet. I take 7 tabs daily in addn to heavily salting all of my food. Make sure to drink plenty of water with the NaCl tabs if you try them. I check my weight every am and increase my Na if it drops by more than 2# but that hasn't happened to me recently. sounds like a good idea to try increasing your Na before trying florinef. hopefully the Na only will work for you!

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Schorobi: I did too! I read where he thinks they cause further dehydration so I threw that option out of the window even though my neuro at Vandy had suggested them. I drink salted chicken broth and pedialyte all day long. It's such a pain.

Are you still doing Levine's protocol? I am basically going to have to start from scratch. I am kicking myself right now.

So overall with the florinef, salt tabs and exercise (assuming you are back on) how would you say your quality of life is? I had gotten to the point of functioning semi normally last summer and fall until I quit. I'm really wondering if my body will respond quickly when I re-start the exercise.

Thanks so much for your advice!

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Ashelton80:

Yes I am still doing dr Levine's protocol...I am on month 4...once you finish month 3 if you are doing well they will give you month 4-6 which includes intervals. I feel normal most of the time!!! This is also my second time doing the protocol as above (because when I went off the high Na I was no longer able to do the upright exercise so just started from the beginning.). I thought since I had been thru the protocol not long before I could move thru it more quickly and skipped ahead but I was wrong...just set myself back so then I followed it to the letter and did great. I did not feel well enough to drive consistently until the end of the second month and then got better and better every week in month three and for the last few weeks have felt normal most of the time. Dr Levine is a genius in my book. I will always stay on his protocol.

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Schorobi: Wow, that is amazing! Good to know as I probably would have tried to push on further since I have done it before too. To be able to say the phrase "normal most of the time" is so encouraging and incredible. As for Levine, I know he tends to get a ton of flack, but I know I will forever be grateful to him. I mean he gave me the knowledge on how to most effectively manage my debilitating condition. I can't even imagine where I would be or how hopeless I would feel without his protocol. It takes sooooo much discipline to manage these symptoms, but I am so thankful that I now know it's possible. I remember the most horrible feeling was the year and a half not knowing what was wrong and not knowing what to do to help my body. So when I am in a flare and I'm sitting in bed or on the couch all day at least I know that things can and will get better!

Have you ever had trouble with your blood sugar? I did for a while, also got it under control and now it's back again. I feel so high maintenance trying to balance eating proper protein/fat so my sugar is stable, ingesting plenty of salt/water to keep my volume up and needing to exercise like a mad woman to strengthen my cardiovascular and build volume. It is a full time job!

You are right about always needing to be on his protocol. It has taken me a while to be able to accept that this is for the long term. That the exercise is managing my condition and the minute I stop things are gonna get bad again. Sometimes it takes relapsing to realize that.

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That is actually the one good thing about POTS to me...I have always exercised, but never as hard as I do now and I never make excuses now, including on vacation, bad days, etc. There is nothing like knowing the dreaded POTS symptoms could hit you if you miss a workout to keep you motivated!

I have had high Glcs in the 200's during "autonomic storms" prior to getting on the right treatment. A few weeks ago when getting electrolytes on florinef my glc came back 46 but I felt fine. I have had very elevated norepinephrine levels (1770 sitting) and I think the glc fluctuations are related, but thankfully I don't have any symptoms from it. have you had low Glcs on testing or just hypoglycemic symptoms?

I hope you try the salt tabs...at least that makes the sodium intake much easier!

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Schorobi

I have never had a low reading. Of course I only get my blood drawn about once a year. Mainly I just have symptoms. Not all the time, just every once in a while if I eat something high glycemic like pancakes and syrup. So I think I have what some people say is reactive hypoglycemia. It's almost like if I don't eat anything at all, it's better than eating something with a lot of sugar. Two hours later I'm crashing.

The "adrenaline surges" or "storms" are the worst. I actually just got finished having one for 2 hours just now. I had a bad gastro flare (diarrhea) and it's next to impossible for me to keep up by mouth. I shook for 2 hours straight and my highest bp was 155/95. Very high for me. Took Immodium and I chugged 2 salted chicken broths, 2 pedialytes, 3 plain bottles of water and a gatorade. Finally my body has calmed. What a NIGHTMARE! I thought for a moment I was going to need to go get an IV. I do everything in my power not to go there! I've only been one other time almost 2 years ago, but I cannot stand the hospital.

It's also hard to know if later when I feel better if I should attempt the bike, or wait until tomorrow and let my body rest. ugh

I'm seriously reconsidering trying the florinef.

.

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I dropped from 106 to 84.6 lbs from last March to this January. I thought I was going to wither away last summer (before they got things figured out and am still working on the motility issues, gastritis and GERD). I am a little over 90 lbs now. Nothing wrong with my appetite (the nausea waxes and wanes and for me is worse in the morning). I take a prescription supplement called Isosource, packed with calories and nutrients/good fats.

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I can lose up to 8lbs in one day. I usually fluctuate 4-6lbs per 24 hour period, and less than that if I have few symptoms.

Mine is definitely always fluid/volume. My labs look awful when I am 8lbs down.

Edited by firewatcher

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Ashelton80: I HATE those shaky episodes!! I actually have not had them anymore since starting the florinef. How much sodium are you taking? If you are up to 10 gm and still having those spells, consider trying florinef. I noted an improvement within 24 hrs, so you could do a 1-2 week trial and see if it helps you.

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in 2006 I had my 1st pots flare, I lost 30lbs in 2 weeks and could not gain it back for 2 years ( I have a very fast metabolism. If I eat a ton and gain 5lbs in one day, overnight I lose all of it).

In 2011 I had a more powerful flare and lost 40lbs and now I still haven't gained it back. Sometimes I gain 10lbs but it doesn't stay on.

I have to wait until my breathing gets better then I know I could gain it back by adding extra calories with Probars. It's a healthy bar that adds 370 calories. Back in 2008 I would eat 2-3 a day..

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