maggie

Issie, Sorry I haven't answered your pm message, I haven't seen any messages left for me. I'm still getting used to using this new forum. If you could help me that would be great. I don't see anywhere on my screen where you see someone has left one a message. Could you please tell me where this is at? I did try to pm you I don't know if it went through or not. I'll be happy to answer if you can help me with issue it would be great! Maggie

Dana, I had my cortisol testing before I was ever on any supplements and the levels were high. As to saying I'm not getting the actual relief I'm getting only think I'm getting. Sorry but now you starting to sound like some of the doctors who told me nothing was wrong with me while my heart rate was racing. We would all agree here that what works for one person does not work for another. I know this supplement is helping me. Maggie

Ashley: I get this herbal from my a doctor I see. It slows down my adrenaline surges throughout the day. I can't take any ssri's because of my liver so it works like that, as a calming solution. So when I exercise, get stressed, or excited it helps my adrenaline gland slow down. Issie:I do believe it has helped me with my pots because of the calming effect it has. When I have adrealine surges they aren't as intense when I use this herbal. When I first was tested my cortisol levels were at 23 the last time I got tested they were down to 18. Now I'm having them tested again to see where my levels are at. In regards to my liver problem: my CYP2D6 liver enzyme is not able to metabolize anything that goes through it. Therefore any med that goes through that enzyme is stronger and lasts longer in my system then it should. Any med going through that enzyme makes me very ill and I get horrible side effects from my liver not being able to metablize it. This has nothing to do with pots, it's considered a birth defect that I was born with. Dana: I did discuss this issue blood draw verses saliva tests and his answer to this was, that if my levels were so off then he would do the saliva test, but at this point their off but not to the point where it would cause them to look for a tumor. I don't get stressed out at having my blood test done with this doctor. I have extremely hard veins to hit and whenever I go to his office the girls get's it done the first time without fail. I won't go to a questlab or labcor to get bloodwork done because they can never get my vein. My doctor's view is the same as what Ashely has stated in her post. He believes that pots is putting stress on my adrealine gland to raise my cortisol levels. Maggie

My cortisol levels were very high when I first received my dx. One of my doctors work with herbals and put me on a raw adrenal concentrate, called Ora-Afren-80. It has helped me so much. Since I have a liver enzyme problem I can't take many meds, so this herbal helps slow down my adreenal. I take one a day and have for the last five years. I'm now just going to get my cortisol levels checked again and then we'll decided if I should keep taking it or start lowering how much I take. Maggie

Congrats to all those who took the time to express the needs to all those who makes these types of decisions. It shows that concerns are heard and that prayers are answered. I'm so glad for all who use this drug, one less worry! Who would have ever thought such determination who win the day? Maggie

I just finished working with an exercise physiologist from our local hospital cardio rehab and am so pleased to inform others that this was such a good experience. It only took three sessions with this person, one to go over my medical records, and two exercise sessions to see what I was capable of. Now she has written up my own personal exercise routine, short term and long term. If I run into difficulties I can just call and make another appointment and go over what my needs are. If any of you are having difficulties in this area I would highly recommend looking for this type of degree to help you as well. Maggie

Thanks so much for this information. I'm in the process now of trying to get ssdi and I will forward this on to my lawyer to see if this will help my case. Maggie

Sara, I wish I could answer all of your questions, but sorry I can't. I am not able to take meds because of a liver enzyme problem so I can't help you there. In regards to how long you have had this, I only have had it for almost five years now. I didn't get pots until I was in my early 50's unlike you having it so young. Instead of getting worse I have seen improvement. I was bedridden for six months at first and in a wheelchair for a year. I am now able to walk but not for long distances. I am able to drive, but there again not for too long. I was told when I received my dx that mine would disapate in time. 2 to 5 years. Now that it's almost five years I have questions similar to yours? How long will this last? I don't see myself recovering completetly. How will this affect me as I grow older? Will I be unable to do things sooner them most my age? Will I still see improvement and see it slowly go away? I guess I have just as many questions as you. I'm sure the answer is different for all of us here. I know I haven't been much help to you, but I have seen improvement and I hope this along can give you some hope. I am hoping some of those who are on this forum and are older will share their experiences with us. Maggie

You will not be able to get info on Dr. Levine's exercise program. I started the process of trying to get into that program. You have to sign a confidentiality clause as to not to tell anyone other then your doctor whom you are working with if you get into the program. Maggie

Potsgirl I'm not doing Dr. Levine's program. When I saw all that was involved I decided that wasn't what could help me, but it did get me to thinking about trying to find an exercise physiologist to create a program just for my special needs. That's what so great about this woman helping me. I'll be able to work at an exercise program that I am capable of doing, and instead of a three month program, Dr. Levine's, I'll work at a pace that will work for me. I'll be working at a pace that I will be able to complete and adjust as we go along. Maggie

I'm just so happy I just got off the phone with my local cardiac rehab. They have on staff an exercise physiologist who is willing to help me design an exercise program for me to help with my pots!!!!!! I have been trying for weeks to get someone with this type of degree to help and have been getting no where, until today. The person who is going to help me is going to do some research first, then we'll have a consultation, and hopefully then a program designed for my needs. What an answer to prayer. Maggie

I'm sorry to read that both your husband and your daughter have pots. I live in Florida, south and was dx at Mayo, Jacksonville. I have had it for five years now. At that time Mayo only dx pots but was not treating it. I do believe that is still their policy, but you could check. There is a Dr. Thompson in Pensacola who has pots himself. I did go see him myself, but I'm so far away and there are times he cancels his appointments because he's not feeling well. I hope you can find someone to help your family. Maggie

I alsp have high cortisol levels. Mine was dx with just a blood draw first thing in the morning. Each time I have had mine tested I'm still high. I take an herbal to help lower it. Maggie

No doctor would take me seriously until I wore a polar heart monitor and went in to the doctor's office with it on. There wasn't any way they could say nothing was wrong. They immediately started running tests. It still took some time to get my dx, but it if wasn't for my wearing a heart monitor all day and seeing what my heart rate was doing, I still wouldn't have my dx. Hope all goes well and you will get some answers. Maggie

When I read this blog I starting thinking to myself that I could use some more creative activities in my life. I have a small quilting business and I love to read, but I just bought a used electric keyboard and started lessons. Thanks for the suggestion. I now practice on my keyboard several times a day now. Maggie

I found my holistic doctor by recommendation from the compound pharmacy in my area. I live in a small town and there is only one compound pharmacy in our area. Maggie

I had my tests done at Mayo, Jacksonville, and I brought copies from every doctor I saw when I started to have symptoms. In fact I had to wear a heart monitor for 40 days and they didn't include that info. Mayo was on the phone to that doctor and stated they had better send those results over right there and then. I had so many misdiagnoses, but they wanted to see all the information that I had. It can't hurt to bring what you have. The doctors there will sift through what they need and what they don't. They can use some of those old tests to compare with the new tests that they will run. Better to come over prepared then under, just my thoughts. Good luck on your visit I hope they will be able to help you. Maggie

Hello Mary, I also received my dx at Jacksonville Mayo and live in Florida. I hope your struggle with your health improves now that you are on the right track. I live in south florida I hope we live close to one another and would be able to maybe get together. Maggie

Thanks for the info Pots Dad I'll begin looking for these items and see if they help. Maggie

I have a dr who ran my dna to find out the problem with my liver and I work with her very closely as to what I can and can not take. At this point the dr only works with pharmaceuticals. I will search the net for a geneticist to see if I can find one to help me. Thanks for the suggestion. Maggie

Pots Dad, I just looked up Elete and what I understood from my research was that there is 125 mg of sodium in a dose of this product for 2 liters of water. How do get so much salt into your daughter's diet besides using this product? I also am getting reviewed by Dr. Lavine's clinic to see if I qualify for his program. I also have been researching for products to help with salt intake. I have been reading that our regular table salt is so refine, like our white surgar, that it has taken out most of the sodium in this product. Has anyone else on this site have input to this? I am so confused now as to where to get my salt intake. Any info on this would sure help. Maggie

Sue, Thanks for the suggestion, but all the pharmacist can do is look it up and the manufacturers don't release that infor. I have even tried calling the companies who produce whatever the supplement is that I have wanted to try and I can't get an answer. Maggie

I also have very low vit d levels, 14. My neru wanted me on a dosage to help, but I a liver enzyme problem and don't know if I can take the supplements. I have to now how it is metabolized in my liver before I can take it. Does anyone have any thoughts on how I could find out this info? Maggie

Welcome to the forum Pots Dad. It's good you have a dx and now can work on the medical issue at hand. I just have one word of caution for your daughter and your family about setting goals. Goals are great to motivate a person, but with pots it's a risky business. When I was dx with pots in oct 06 the doctor told me mine would be over in two to five years since I had a mild case. I thought to myself great in two years this will be over and I will be able to move on. I did everything I could to help me achieve this goal, but it came and went with improvement, but not gone. I was so discouraged that it took me some time to regroup and say ok maybe it will take just a little longer. It's now five years and I still see improvement, but am I anywhere near being normal, I'm sorry to say no. Be careful not to set the standard too high, it's very difficult to deal with not reaching one's goals. I will certainly pray for healing for your daughter and I hope she is able to get back into school by September. It really difficult to read on this forum when young people are so effective with this medical issue. May God walk with you during this journey. Maggie

In regards to this issue I would advise you to call your local hospital and emergency services. I called mine in regards to this bracelet and under no circumstances would they use this devise, even if I was dying. The hospital symtoms won't even let these devises into their computers and the emergency services have no equipment on board to use this either. I called the company to ask them if they knew where in the US they would take this and the gentleman I talked to stated a small area around N Carolina. He instructed me to call my area to see if they would use the devise. I sent my bracelet back upopened since it could not be used where I lived. I hope you get a better response, but I would call in your area to make sure it can be used, or else you're relying on something that won't work. I now carry my important medical records with me and I wear a medical bracelet stating where my important medical information is. It seems backwords in this day and age of electronics, but we have to be careful and make sure what we use for our condition works. Maggie