FarmerAmy

Does anybody know about Dr. Kyprianou's POTS Treatment Center in Texas? I came across it today, but I'd never heard of it before. They use biofeedback among other things to help POTS. Here's their web page http://www.potstreatmentcenter.com/

Right now I'm placing my bet with "nutrition".

I am self employed and have crummy insurance, so I pay for many of my medical expenses out of pocket. I need to look into Medicare--I think I might qualify. I'm glad the IVs are helping you! I did 4 or 5 of them in December and the only difference was that I had to pee a lot more!!

I have received IV fluids in my own elaborate way. My doctor wrote a prescription and I got all the IV supplies delivered through Walgreens Infusion Services. Then my friend, who is a home health care nurse, administered the IV. Not sure if that helps at all, but that's the way I got it to work for me. Would it be worth looking into getting a port?? I wonder if that would make the logistics easier for you?

I am sorry that your doctor is so unhelpful with the Effexor tapering :-( I have gone off both Effexor and Cymbalta at different times and it is not easy. You should absolutely be able to taper. My doctor had me take the smallest dose, then one every other day, etc. At the end my doctor even had me breaking open capsules and just taking a few little beads to deal with the withdrawal. Also, I've never done this, but my psychiatrist has said that you can switch to Prozac while tapering since it has a longer half-life and doesn't have bad withdrawal issues. I'm guessing you are dealing with just a family practice doctor and not a psychiatrist. I don't think any psychiatrist would put you through this. I don't know exactly what to tell you, but you should absolutely not have to deal with such withdrawal. There is no good reason to do it. Good luck! Amy

I often have icy cold feet and hands. I especially notice that my feet are freezing when I got to bed at night. I also have problems with my feet cramping when they are really cold. And it's been a long time since I have been on a stair master, but my feet used to go numb when I would use one. My feet always feel better once I get them warmed back up. Are your toe numb because they are cold? Do they feel better when you get them warm?

Sorry you've been so sick! I'm in the same place you are. The LRs aren't really doing anything for me. I've considered trying a saline IV or maybe a Myers Cocktail, but I haven't done either of those yet. Good luck!

Good luck! I really want to hear how your trip goes and if you learn anything new to help you. I just got the application to be considered for research at Vanderbilt. I'm not certain I would do it, but I would love to hear about your experience. Amy

Bleg. I read this post and decided to try some licorice roo tea. I got the Traditional Medicinals brand and holy cow is it too sweet!! I wonder if there is a different way to consume the licorice root without having to drink something so sickeningly sweet.

You would probably have to go on a restrictive diet for at least a month to see if you have food sensitivities/allergies. Get everything cleaned out of your system, then slowly add foods back into your diet one at a time and see if any foods cause symptoms for you. My doctor told me that my headaches and joint pain are an immune response to foods I am sensitive to. I would have not believed this if I had not experienced it myself. I generally don't have any GI issues at all. But it never occurred to me that my other aches could be caused by gluten, sugar, etc. But now that I have been on this diet, I can really tell when I eat food that upsets my system. There is a lab called Metametrix and they do a lot of testing to identify GI and other issues. They could help you find a doctor to work with in your area.

You can get Nuun Natural Hydration tablets or a different electrolyte powder at someplace like Whole Foods. I think this is a much safer and healthier alternative to Gatorade.

My Functional Medicine doctor diagnosed me with fungal dysbiosis a few months ago. She put me on a very restrictive diet to try to heal my gut. I hardly ever have gastro intestinal symptoms. But if I cheat a little and eat something that is not on my diet I get a smashing headache and bad joint pain--especially my hips and knees. Your symptoms seem like a food sensitivity to me--especially the hives. You might try an elimination diet to see if any foods are causing your symptoms. Common culprits are gluten, dairy, etc.

Mandi, My doctor didn't believe me when I said I was gaining weight due to the Cymbalta. I slowly gained about 10 lbs per year and he just said that we gain weight as we get older. I didn't include all the details in my first post, but I will now in case they are helpful. I gained 35 lbs over about 3 years while on Cymbalta. I stopped taking it at one point and lost 30 lbs in 3 months without even trying. Unfortunately I also went into a major depression and went back on the Cymbalta and gained back the 35 lbs in under a year. I switched to Zoloft and the weight started to slowly come off again and I am finally back to my normal weight. At first my doctor was adamant that Cymbalta does not cause weight gain. But I know my body and I've always been slim without trying. I tried to convince my doctor, but he was so certain that I began to doubt myself. Now that I've been through a few weight gain and loss cycles, my doctor says "of course it was the Cymbalta!" Luckily I think he is a good doctor, otherwise I would have found a new one after this experience. Your weight gain might be completely unrelated to Cymbalta. But you know your body best, so don't let your doctor make you doubt yourself if you feel strongly about this. Good luck! Amy

I am currently seeing a doctor who practices Functional Medicine, which looks at the root cause of disease. My doctor has diagnosed me with adrenal insufficiency and fungal dysbiosis and she thinks these are contributing to my POTS symptoms. She has me taking a lot of supplements and also really focusing on nutrition to improve my immunity and overall health. No miracle cure so far. But I like her approach much better than my cardiologist's approach, which was to just throw different meds at me. Look at the Institute for Functional Medicine online to find a doctor in your area. As for "is it just POTS or something else" I sort of feel like who knows?!? I doubt I'll ever find the answer, so I try to focus on my overall health and work to manage my symptoms.

I feel like you are getting bad medical advice. How can you have "normal" results from a TTT if you felt symptomatic during the test? You know your body and your symptoms better than anybody else. If your doctor says something that doesn't sound right to you, I would either keep pushing him or find a different doctor who seems to listen to your concerns.

I am considering trying to make a trip to Vanderbilt, but I thought I should try harder to see if there any good POTS doctors in Colorado first. I had a cardiologist in Boulder that I liked, but she sort of hit a dead end with me and didn't have anything else to suggest. Anybody know of a POTS doctor in my area to recommend? Thanks! Amy

I don't have GI issues, so I don't know if this will help. I have been on a very restrictive diet for a few months. It hasn't improved my POTS symptoms, but my digestion seems much better. I have gf steel-cut oatmeal with nuts, seeds, apples, and honey in the morning. I have a huge salad every night with greens (kale, arugula, whatever), carrots, pumpkin seeds, and hardboiled egg. Like I said, my digestion feels so much better when I eat these things. Also, have you looked into fungal dysbiosis? There is a lab called Metametrix that will do the testing. They will also help you find a practitioner in your area.

I drink as much fluid as I can without being miserable. I was drinking 3L + per day, but that was terrible because I spent the whole day in the bathroom. Now I try to drink as much as I can without forcing it too much. I highly recommend getting an electrolyte powder from someplace like Whole Foods. You really don't want all the sugar that is in a drink like Gatorade. I would also stay away from caffeine because it is a diuretic and it kind of defeats the whole point of drinking all those fluids. I also drink a lot of herbal tea. I drink mint, dandelion root, and licorice root. I add a little bit of salt to all of these. I also drink chai (minus the tea) that my wonderful husband makes for me. He boils a bunch of spices, then adds coconut milk and a tiny bit of honey. Yum!

Uggh! Sorry your surgery got postponed. I'm sure you don't need 4 more days of nail biting! I'm all for the movie suggestion. Get on Netflix and look for any of your favorite feel-good movies. We will all be thinking of you on Monday and hoping for the best! Amy

My experience is a little off-topic. I was taking Cymbalta for a few years and gained 35 lbs. I switched to Zoloft and the weight started to come off very slowly. I started a very restrictive diet a few months ago to treat fungal dysbiosis and heal my gut. It's sort of like the Wahls diet or Paleo diet. I eat oatmeal with nuts, seeds, and spices in the morning. And I have a huge kale salad every night. I also eat a ton of pastured eggs. Anyway, I lost the rest of the weight and it feels so good to be back to my normal size. As far as exercise, I try to walk a few miles most days when it is cold out. I also go to the pool. I can do both of these activities without feeling lightheaded.

Alright, the idea of an abdominal binder sounds terrible to me, but I think I will give it shot! I wear thigh-high compression stockings because I can't bear wearing full length stockings. But maybe I will be able to deal with the abdominal binder. Thanks Corina!

Peregrine, I definitely think I get blood pooling in my legs. If I stand up for a bit, I get blue splotches on my legs. My legs also become achy quickly. I just got a new pair of 30-40 mmHg compression stockings, but they aren't doing much to help. I wonder if anybody has experience with more compression???

I've never fainted either--I just get real close to the edge. I think if you have a sympathetic doctor he/she might explain that POTS is a fainting disorder. And I would stay away from the word "syncope" since most people don't know what it means. As far as "permanent", POTS is a "chronic" illness. We all hope to get better some day, but there is no guarantee. That seems pretty close to "permanent" to me.

In general, I tell people I have a fainting disorder. People seem to be very responsive to that! Maybe your doctor can explain that you have a fainting disorder?? People seem to get the word "fainting" in a way that they don't get "fatigue", "lightheaded", "nauseous", etc.

I just have my own experience to share. I have had POTS symptoms for 20+ years and my POTS really flared up a year ago. For many years it seems like I have caught every germ that passed by me. I had at least 4 colds every year. This past June I started seeing a doctor who practices Functional Medicine. One of her objectives is to strengthen my immune system. She has me on a ton of supplements (vitamin D, etc) that are supposed to strengthen my immune system. I'm also on a very restrictive diet with no refined foods. Amazingly, I have not caught a cold in over 6 months. This is unheard of for me! I've even been around my niece and nephew when they were sick at the beginning of the school year and I didn't catch their colds. It's hard to say for sure, but maybe my doctor's efforts are paying off and I am developing a stronger immune system.