Pots Syndrome ? Can You Really Heal ?

[GypsySoulNicole]

It is so strange to feel my feet! I didn't think neuropathy could improve like that. It's so weird to have so many body systems improve at the same time, like gi issues, sweating, sleeping, and body temperature. I would have been happy with just the dizzy, tachy, feeling like I'm on my own personal carnival ride, feeling going away. My si joints and back even feel better, not perfect, but better.

I picked rocks in the field yesterday, huge rocks for landscaping. Worked in the heat bending and throwing them, things that a normal healthy girl would have struggled with, it really feels like I have super powers now after being so ill for so long.

I started detoxifying last fall. Through out our cleaning chemicals, beauty products, and changed my diet. I started noticing a difference then. I still take Adderall (only prescription med I'm on), Samento (a Tao free cat's claw) and Banderol, both for lyme. Tropical Traditions cold pressed coconut oil daily, this gives me an energy boost. I also alternate with supplements like garlic, tumeric, grapefruit seed extract, and a few others. I fell off my strict diet about 6 weeks ago. I'm just eating healthier, grassfed meats, fruits and veggies, stearing clear of processed, chemical laced foods or pesticides. Although, I did have a nutty bar binge recently!

I even eleminated toxic people from my life. Anyone who stressed me out! The final thing I started was Earthing, a few weeks ago. I started making physical skin contact with the Earth (sitting in the grass with barefeet) atleast 30 min to 1 hr a day, based on research that it would improve autonomic tone http://www.earthinginstitute.net/index.php/research

I thought the thermography images were interesting and thought it was worth a free try. Maybe that is why the neuropathy has improved so much. Like I said earlier, I posted a topic on Earthing previously.

[Joann]

Alex,

I agree with you, I would consider myself better, if I could live a normal life even if it was on life long medication. I also agree with someone else on the post, I think finding the cause of it would help us get cured. Too many doctors just want to try and cover the symptoms and not look further.

[TXPOTS]

I had POTS for 3 years. It followed a waxing and waning pattern and finally left me completely bedridden. I can recall my heart rate lying down was 60 bpm and would rocket to 200 bpm after standing for 10 minutes or so. Yuck! Yuck! Yuck! I felt like "death". I finally started Florinef, DDAVP, and gradually started an exercise routine. At my peak, I was jogging 8 miles 4-5 times per week, lifting weights, rowing, using the stair master, and a cross trainer. I pumped my blood volume up to elite athlete levels per Dr. Levine. I dropped the Florinef and DDAVP without issue. I still qualified as having POTS based on my resting and standing hear rates, but my standing catecholamine levels were normal, and I very gradually began feeling normal. It has been about 3 years, I think? I feel fabulous with no POTS relapses and exercise like a regular human these days. I have absolutely zero fear of getting POTS again and rarely spend time worrying about the past. The first older cardiologist who diagnosed me said he had two other ladies with the condition who gradually improved and became POTS free. Neither experienced a relapse. Remember that those who have recovered are not hanging out on forums.

[davecom]

What is DDAVP?

[Guest Alex]

DDAVP - desmopressin an antidiuretic that favorizes fluid retention so it may help those with a low blood volume and low blood pressure.

Alex

[davecom]

Gypsy - I'm so happy to hear about your recovery. So you would really attribute it to Earthing? Have you measured your standing heart rates before and after the week of Earthing? Keep up the recovery!

[issie]

Nicole,

Thanks for listing the things you are on and what all you are doing. Nice to be able to compare notes. What do you think the Adderall does for you? So, your doc doesn't have a problem with you using coconut oil? My doc has us on low fat diet - because he says that fat helps the protozoa to survive. But, I know that caprylic acid that comes from coconut is supposed to be good for yeast problems. So, is that the idea behind or is it for the MCT's. I've read really good things about it helping with brain fog.

Issie

[looneymom]

I going to start the Earthing stuff with my son. I would also like to know how Adderall helps you. Our cardiologist has also mentioned this medication to try. He also know that my son is using coconut oil. My son's immune system seems to be a little better right now. He seems to be dealing better with the cold/hot weather cough. Instead of having to give cough syrup day and night, I'm only having to give it a night. Usually is has turned into croup by now. So far so good.

[Sufilizard]

My symptoms come and go, but I'm able to live a fairly normal life. For me, finding a regular exercise routine helps a lot.

I started out years ago doing a pretty easy 15-minute yoga routine every morning - my wife got me a video called A.M. Yoga. I still try to do it almost every day and I find even on bad days I can usually handle that. I've also started doing just 10 push-ups after my yoga. The push-ups started about a year ago. The weird thing is, sometimes I can knock out 10 without much trouble at all and other days I have to really struggle to finish the last couple. It seems like in "normal" people if you did it that consistently your ability to do them wouldn't fluctuate so radically. For a while I was even running, but I found the same thing - some days I could run several miles, while other days I couldn't even finish one mile. There didn't seem to be any rhyme or reason to it. Now, I try to just walk a mile or two as many days as I can. For me, I can always muster up the strength to walk (I realize that's not the case for everyone) even if I don't always have the time.

I've also added some supplements.

A couple of other things that have seemed to help me out a lot - at least until my recent change in medication threw me out-of-whack: I started taking Vitamin D3 supplements and Fish Oil a year or two ago. (2,000-4,000 mg D3, 3,000 mg Fish Oil daily). This had a tremendous benefit on my health. I used to get really, really sick at least 4-5 times a year. No matter what was going around, I would get it worse and it would last longer in me than everyone else I knew. That stopped almost completely when I started the supplements (I also started using a neti pot most nights before bed). Since that time, I've only been really sick once and it lasted a normal (if not shorter than average) length of time. Other than that one time, I've felt like I was coming down with something a couple of times but never really came down with it - just a day or so of feeling a little off. Meanwhile others in my family, including my wife, who tends to be very healthy, came down with pretty severe illness.

At work, I eat a pretty crappy diet, but we raise our own grass-fed beef and free-range eggs, so I do get pretty healthy food at home. I suspect if I was more careful about my diet all the time, I would probably be able to improve even more.

I currently take one prescription medicine: an anti-depressant - currently Citalopram 20mg, recently switched from Nortriptyline. This change seems to have thrown me for a loop especially returning me to severe insomnia, but until this switch I was feeling pretty darn good for most of two years. I would never had said I was cured or even completely symptom-free, but I would be happy to return to that level.

We all seem to be different on here, but that's my story - I hope it can give you some optimism that even if you aren't "cured" you can get to the point of living a pretty normal life.

[GypsySoulNicole]

Adderall was a lifesaver for me. Gave me the energy boost to function, helped my bp and calmed my brain. I've tried different coconut oils and when I got the gold label virgin coconut oil from tropical traditions I saw a huge difference. It cleared my brain fog. I eat it, use it for lotion and in my homemade beauty recipes. If you buy from their website they send you a free book with uses, health effects and recipes. It's amazing for yeast.

I went high fat (grassfed meats, butter, milk and coconut oil) for the total picture. I knew I had more going on that lyme. Even though low fat may starve the protozoas it may also starve me of essential nutrients to help build my immune system to control all the other crazy stuff malfunctioning. Here's an interesting article on fats http://www.faim.org/nutrition/fourfoldpath.html

I may have stumbled onto something crazy though - it's worth it's own topic and maybe could point to where some pots research should be. I didn't mention a possible key factor to my recovery, because I didn't relate it to me feeling better. A hospital trip 2 nights ago helped me figure it out! I will post a new topic on it.

[issie]

I copied this from the Linus Pauling Institute on EPA.

Potential for Immune System Suppression: Although the suppression of inflammatory responses resulting from increased omega-3 fatty acid intakes may benefit individuals with inflammatory or autoimmune diseases, anti-inflammatory doses of omega-3 fatty acids could decrease the potential of the immune system to destroy pathogens (223). Studies comparing measures of immune cell function outside the body (ex vivo) at baseline and after supplementing people with omega-3 fatty acids, mainly EPA and DHA, have demonstrated immunosuppressive effects at doses as low as 0.9 g/day for EPA and 0.6 g/day for DHA (1). Although it is not clear if these findings translate to impaired immune responses in vivo, caution should be observed when considering omega-3 fatty acid supplementation in individuals with compromised immune systems.

I guess this is why my doc doesn't want us to use too much fat. However, because I felt like I needed more - he is allowing me to use a DHA that is from an algae source. That addition has seemed to help my brain fog issues. I must say, that not having fat is the hardest thing for me. Otherwise, the vegan diet seems great.

Issie

[icesktr189]

Mine was abrupt (came on in January of 2008) and i thought since I was young, it would go away. However it hasnt and I think it has to do with the fact that mine is genetic somehow. ( My mom has POTS too). It really depends on what caused it to begin with.

[sarahm]

I also had sudden onset POTS that started in April 2011. My progress has been slow but steady. I was basically bedridden and now I can walk about 2 mile on a good day. My doctor is a POTS specialist and has told me that the majority of people that have "true POTS" get completely better. According to his definition "true POTS" is POTS and only POTS no other underlying conditions. Many people have postural tachycardia do to some other underlying condition and he would not consider these people POTS patients. They are still not 100% sure if I have POTS and only POTS, as I have some symptoms that they don't consider textbook and I haven't responded to medication like typical POTS patients.