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Ashelton80

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Everything posted by Ashelton80

  1. I am sitting here shaking with tremors right now. Is his volume ok? Mine are always triggered by low volume usually because I can't keep it up by mouth when I am having gastro problems (ie diarrhea) like I am today. These were all a memory last summer while I was exercising. It helped them soo much. They are the worst!! My heart goes out to you and your son.
  2. Leigh, Thank you so much for sharing your encouraging story! I actually stopped coming to this forum over a year ago because I was experiencing the same reactions. Lots of people on here were very defeated and negative (understandably so), but the mention of some things that were helping me that didn't include meds and I was immediately shut down. Especially if I mentioned that I was doind Levine's protocol. So naturally I didn't visit for a year and now that I have come back you are right, things are so much lighter, positive and open here! I have also seen first hand the benefits of exercise. I had a really good year last year! I am in awe of your persistence and applaud you for your effort. LOVE hearing success stories. Funny thing is, I am hearing more and more of them. The common denominator in almost all the stories....Exercise. Take care!!
  3. blue: I will try to find and post the link to the article that talked about the side effects. I had diarrhea (pure water and chia seeds). I was in the bathroom all day and I couldn't keep up fluids orally. I also had a bp drop to 85/60 which I have NEVER had in the 3 years I've been ill with POTS. I also had pain, gas and bloating. It was a miserable afternoon! lina: He put way too many. The day before he had put maybe a 1/2 tsp and I did have some gas and mild diarhhea. I'm thinking he over did it, but I won't be experimenting with that again.
  4. My husband has been on a real kick lately with chia seeds. I had heard of them and read all the wonderful properties that they have as being a super food. Supposedly filled with good protein, fat and fiber. Yesterday morning he fixed me a smoothie and put a ton of them in. I was basically chewing/crunching my smoothie About 2 hours later I was having major gastro issues and losing a ton of fluids. Of course this made me extremely symptomatic and even brought on some different ones that I hadn't experienced before. I started googling chia seeds and sure enough found my answer. They will absorb 12 times their weight in water, lower blood pressure AND make you feel full! NONE of those things are a good thing for me! It literally took me 5 hours to get my body to settle from these little devils. Just wanted to let you know in case anyone had ever thought of trying them. Such a perfect example of a "healthy" food being not so much for me!
  5. 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.
  6. When I exercise it definitely depends on the state of my physiology as to how I am going to feel afterwards. Sometimes I feel this calm energy and am able to do things normally. Other times I am completely exhausted and light headed and need to lay on the couch for the remainder of the day. There are so many variables like hormonal cycle, volume status, blood sugar etc that I know can influence whether I feel great or feel like crap during and once I'm finished. I think that's probably the main reason I stopped exercising. Once I got the majority of my life back, there were so many things I wanted to do. Since the exercise still had the ability to make me feel bad the rest of the day I would often skip to go and do something I really wanted to do like play with my daughter or shop. Obviously that thinking is so backwards (i know that now) since originally it was the exercise that allowed me to do those things. It's a very hard and delicate balance I am learning.
  7. 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!
  8. 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.
  9. I have heard a few on here sing the praises of licorice root. I also have an IRL friend with POTS who swears by Standard Process adrenal complex, which is basically just 125 mg of licorice root. My question is for those who are taking it or have taken, how much do you need to take to notice a difference?
  10. I don't want to discourage, but I took Zoloft for 2 days. After all that I have been through over the last 3 years those 2 days were the worst in my life. I felt like I was plugged into a light socket. I had soooo much adrenaline and then when it would finally calm I just felt mentally unstable. I have never felt mentally unstable a day in my life except for then. I can see where it would give more energy if it weren't such a harsh feeling. There is no way I would have been able to "get through" for a few weeks.
  11. Oh and how is the florinef working out for you? I've never really given it a good try.
  12. 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.
  13. 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.
  14. Yes I did the first month like the protocol says to do and then for the next 3 months I did my own version of it. It had a dramatic positive effect on me. I went from 3 years of house/bed bound to being able to take my daughter to school, go to church, eat at restaurants, vacation etc. After those 4 months I started losing some motivation because I seemed to be hitting a plateau with how much I was improving. Looking back though I wasn't really increasing my program either. I was staying on the recumbent bike instead of moving up to the stationary and then on to the upright machines. Maybe thats why my progress stalled. Either way I quit all together last August and now I am starting to see a lot of symptom return that had gotten better with the exercise. I'm kicking myself for not just pushing through because I am about to start it all over again. The only positive is that I am still in a better place than I was this time last year when I started so I am hoping that when I re-start I will see improvement really quickly.
  15. I definitely think the vitamin D was a big factor too, but before we went on the trip I was out at the pool quite a bit so I know my vitamin D was adequate before I went on the trip. I also forgot to mention that when I returned from that trip I had gained 5 lbs in a matter of a few days. So one theory is that I was absorbing the salt more effeciently and it boosted my volume transdermally. sp? I need to try the Epsom baths as several people have mentioned doing them. Issie I would LOVE to move there! If we didn't own a business in our current city I would move and just soak in the ocean all day! The sun and the salt have such a healing effect on my body. I just wish I could figure it out and recreate it here in gloomy Nashville. As I look back over the last few years, a major pattern has started to surface. That being February is notoriously my worse month of the year. 3 years ago around this time was my first "blacking out" incident in JoAnns craft store shopping for my daughters 2nd birthday party. 2 years ago today I was in the ER at Vandy so sick trying to figure out what was wrong with me. Last year was ok and this year is a little better, but not as well as I was this past summer/fall.
  16. Last spring I started working out on the recumbent bike 2-3 days a week and with a trainer doing lower body/core 2 days a week. I saw dramatic improvement within the first few weeks which at the time surprised me quite a bit at how well I responded. I had been very ill and sedentary for quite a few years. I continued on for the next 5 months with continued improvement getting roughly 60-70 percent of my life back. My family and I scheduled a beach trip since I was doing so well. During this trip (Destin area) the water was clear, no waves and just breathtakingly beautiful. I normally don't spend a ton of time in the ocean, but on this occasion it was so nice that I ended up soaking for hours a day in the water over the course of 4 days. Each day after the first I noticed that I was getting up and ready to start my day at 7 am instead of dragging myself out at 10 am and just had more energy overall. Not normal, but just much better. For the next month after that trip I experienced the most symptom relief I have had in years. I just felt different physiologically. Stronger more stable energy were the most noticeable. After about 5 weeks though I could tell that the benefits that I had gotten were starting to slowly wear off. So we ended up planning another trip. It was October at this point so and the water wasn't as nice. I didn't spend any time in the water on this trip and as a result didn't seem to get the same benefit as I did on the first trip other than a little sun exposure (vit d). All this to say, last week I got results from a blood plasma mineral panel that my doctor ordered. Every single mineral tested was low except iron and zinc. Do I need to just take a mineral supplement? Is this why I got such relief from the ocean as I'm pretty sure the ocean is full of minerals and I was absorbing them through my skin? If anyone has any insight on this I would love to hear. Thanks Ashley
  17. I feel sorry for all on here that can only see the flaws in what this man has done. My life was destroyed by POTS 2 years ago. Was it caused by decoditioning? NO! I know that, my husband knows that, but if you discredit and write off the whole study because of that then friends you are going to miss out on a possible treatment to make you a whole **** of a lot better! Because trust me when I say this, I AM GETTING MY LIFE BACK! And it's all because of Dr. Levine's exercise protocol. You don't have to agree with everything the man says for goodness sake, but like it or not this IS helping people with POTS. So, the old saying is "don't knock it til you try it".
  18. Yes, it's based off of your 10 minute stand test results. I'm in week 8 and for me it has reduced all of my symptoms including brain fog, overall pain but especially chest pain, shortness of breath, dizzyness/disorientation (ie feeling like I'm going to pass out all the time), chemical sensitivies are gone (diet played a big role in that), etc. I wish I would have kept up with my heartrates during all of this to see if they are lower and more normal and if they coincide with symptom reduction. I am sure they do, but I do need to strap my monitor back on for a few days and see how they read walking around doing everyday errands and stuff. I used to wear it everyday, but when I started to get better I just didn't feel like putting it on anymore.
  19. Good luck to you!!! I am about 6 weeks in and I can already tell a HUGE difference. I honestly can't believe it has helped me so much so quickly. I was very very nervous at first, but it has really been all uphill since after the second week. I still have to rest for several hours after I complete the exercise session, but the next day or on my days off I have been able to run errands, take my daughter to school, go eat in restaurants (hadn't done that in 2 years). You can do it!!!
  20. Some of my favorite gf sites glutenfreegoddess.blogspot.com elanaspantry.com or maybe blogspot too cant remember thespunkycoconut.com everydaypaleo.com Get some good cookbooks too, it helps a ton to have resources when switching over!!
  21. I have been gluten free since November 2010. It has ABSOLUTELY been crucial in my gaining function back. I tested negative for celiac, but just had a feeling it was negatively effecting my health. I agree with the poster above to go for it and give it a really really good try. Sometimes it can be difficult, but in my opinion POTS is much more difficult. I also think that if I hadn't of removed gluten 3 months before starting Dr. Levine's protocol I would have failed miserably instead of having the incredible success I am having with it right now!! Good luck
  22. I was negative to all the test results as well, but I had remembered years ago that I removed them to try and lose weight and I felt great!! So, I just removed them again and eat only real unprocessed food and it has made a huge impact on my symptoms and overall energy. I have only been in the 160's a couple of times while biking and it definitely is not comfortable. I like to keep it around 140's. That's where I feel like I'm getting a good workout, but not killing myself. I do know that now that I am almost a month into the protocol I can tell I am becoming more conditioned as it's taking my heart longer to increase and I am recovering my heartrates when finished much much quicker. So to keep improving and not plateau I'm sure I will have to pump it up a bit It has been so rewarding to be able to exercise and see muscles again!! I had always heard exercising helps, but honestly I never thought it would help this much. Try sitting for a while and see how you do and if you improve. Good luck!!
  23. Per Dr. Grubb's nurse practioner, POTS has a very strong autoimmune component. Gluten/Grains are inflamatory in nature and most people are "allergic" even if the test's don't reveal it. They have been encouraging removing gluten and dairy since these are two of the main food allergens/intolerances. I have been off of them for 4 months and I no longer have seasonal of pet allergies. I had previously had both allergies for well over 10 years. I have breezed through the blooming this spring with not the first sniffle!!
  24. Hi, I am having success with Dr. Levine's protocol! I will say that what I have eaten and when I have eaten effects how hard or easy my sessions are. It also depends on my Atlas (first bone in neck) if it is mild, moderate or severe as far as being out of alignment ( i see an atlas orthogonal chiro). If it is severe my breathing is much harder and I don't feel like I'm getting enough oxygen and my head feels like it's going to explode. Or like yesterday, I was adjusted on Friday and my breathing was really smoothe and easy during my long cardio session. Also, it seems when my heartrate gets above 165 I can also have a tad more trouble. Are you exercising sitting down? All of these things would be magnified and I would more than likely be unsuccessful if I were walking upright on a treadmill or doing eliptical. That makes a huge difference in being able to keep your heart from having to work so hard and in turn causing you shortness of breath and breathing problems. I can't stress enough that if I had not of gotten the gluten/grains out of my diet I would not be as successful with exercise. If my atlas was constantly torqued to the left and causing my muscles from my neck to my mid thoracic to spasm, I would not be as successful with the exercise. They all play in together and each one affects the other.
  25. I deal with this as well. No sugar, no grains (except i will have brown rice on occasion), only plain greek yogurt (high protein, no sugar) and low glycemic fruits such as berries. I won't touch a banana. Eating every 2-3 hours at first. This has pretty much dealt with the issue for me and once I got it under control (takes a couple of months) I feel a ton better and can go much longer periods of time now without experiencing the shakes, etc that come with low sugar. It is not easy, but once you get the hang of what you can eat (ie real food, no processed junk) it's totally worth it. Good luck!
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