JaneEyre9

Eliminating gluten helped improve my POTS symptoms rather dramatically. And yes, even one small exposure to gluten can set a sensitive person back for a while until your body can heal. A damaged gut from stress, antibiotics, pesticides, gluten, viral/bacterial/fungal/parasitic infections, and poor diet can cause intestinal permeability, inflammation, and difficulty absorbing nutrients, leading to deficiencies. It may help to explore ways to heal the gut lining naturally as well as supplement with more easily absorbable whole-food vitamins and minerals (zinc and magnesium especially). Cutting out processed foods, added sugar, and/or dairy may also help relieve symptoms as you heal from the gluten exposure. It took me a while (years), but with a rather strict organic, whole-food diet (avoiding most grains, dairy, sugar, and additives), and gut-healing supplements like gelatin/bone broth/l-glutamine, I was able to get rid of my disabling POTS symptoms. Recently, I also discovered that excess histamine (related to poor gut bacteria) was a problem for me. If you have trouble with probiotics or probiotic foods, you may be interested in histamine-degrading probiotics (i.e. Custom Probiotics d-lactate free). My best advice would be to find either an integrative health physician or someone who looks at the body as whole for healing the gut as well as your dizziness. In my case, they were directly connected.

Hi Blue, This is my first time checking back in here on DINET after being gone for years. I became disabled by POTS in 2005. I too wanted to find a root cause, but I was given only band-aids to try to manage symptoms like florinef, beta blockers, and cardiac rehab. I was completely unable to continue with graduate school or my career and was stuck at home needing a lot of help to just function day to day. In 2010, I encountered a new way of thinking about diet from Dr. Grubb called Anti-Cancer: A new way of life. That book was all about reducing inflammation in the body. Later that year, I went to the Cleveland Clinic Center for Integrative Medicine and saw an MD who also talked about reducing inflammation via diet changes and targeting imbalances in digestion (fungal, viral, bacterial). Changing my diet turned my POTS around. I got rid of sugar, processed food, gluten, and actually all grain for quite a while and only ate veggies, high-quality/organic meat and fish, and small amounts of fruit. I also took a natural anti-viral called olive leaf extract and tried to supplement with probiotic foods. These changes to heal my digestion were key for my recovery and allowed me to start VERY gentle exercise - gentle yoga lying down, tai chi, walking small distances. I have recovered to a great extent and have tons more energy. It used to be that unloading the dishwasher was my big accomplishment in a day. I had to choose during a week if i wanted to go out to see a friend or try to walk on the treadmill, but i couldn't do both. Now, I function quite normally - shopping, doing errands, exercising, driving, working part time, cleaning, and I cook every day to maintain my anti-inflammatory diet. It has been encouraging to feel the gradual progress. I've gone through a lot of trial and error, but I want to tell you that there is hope and there are answers. Integrative and functional medicine doctors can help you get to the root of your issues. They address adrenal function, thyroid, digestive problems, food sensitivities, hormones, and more. Adding in certain liquid or whole-food forms of vitamin D, magnesium (transdermal), B-vitamins, and other vital nutrients like vitamin C and zinc can be so helpful if you haven't been absorbing them well. If you are looking for a big difference without any downside, I would highly recommend avoiding all sugar, processed food, gluten, and dairy. They are some of the most inflammatory foods and are not doing us any favors as we battle auto-immune issues and POTS. I hope this helps! I have somehow started getting DINET updates in my inbox again recently, so i checked back in here and saw your post. It is hard, but you can get better. There is hope!

Me too, misstraci! I never thought I'd make it on this new diet since I lived off of bread, cereal, noodles, and desserts. However, I felt such a noticeable improvement after a few weeks of changing to eating more protein/vegetables that it gave me the motivation to keep going. I wish I had known earlier how much better I'd feel avoiding sugar and grains. Hope you feel better!

Swimming, recumbent biking, pilates (done supine), and walking (as you are able) are good exercises for dysautonomia. I find that yoga helps me to gain strength. (Easy Yoga by Suzanne Deason is very good for POTS aside from a few standing/bending positions.) If you are bed-bound, there are also yoga DVDs for bed-top yoga. As for diet, I have had a lot of success by eliminating refined sugar and reducing dairy, gluten, and high-carb meals. I try to drink decaf green tea for antioxidants, and I eat ground flax, walnuts, and salmon for omega-3s. Probiotics can also be beneficial. I like WholeSoy plain yogurt, but there is a new kind out now called Amande which is made from cultured almond milk. It's quite tasty (without the dairy). Hope this helps!

Multiple Chemical Sensitivity (or Environmental Illness) is often caused by toxic overload. I suffered from this after living in a house that had hidden water damage and toxic mold. After moving out, I was made worse by subsequent exposures to pesticides and herbicides. If you do have these sensitivities, the best thing to do is to make sure you are living in a clean/safe environment, avoiding pesticides and harsh cleaning products, and eating organic foods to lighten the load on your body. Through avoidance, it's possible to slowly heal and be able to tolerate more as the years go by. I also know of a family that started a rigorous detox regimen under the care of a specialist to help them with their sensitivities. You can find their story and resources here.

I just tried Pepto tablets recently. I agree with Erika that it seems very gentle and did not bind me up completely. I personally like Kaopectate (liquid) for the bad cramping. I used to keep a bottle of that by my bed in college.

When I left the house and stayed with a friend, I noticed a clear improvement in my energy and ability to think. I was able to function once again and go to school. However, I was very sensitive to mold, pesticides, and other chemicals. My symptoms would return almost immediately upon entering a "sick building." This chemical sensitivity has improved a great deal over time, but I can still tell if a place has a mold problem just by walking in and breathing the air. Not sure if that's a gift or a curse. ;-) It sounds like your remediation team is very thorough and taking all necessary precautions, which is wonderful in light of your air testing. It must be very overwhelming in every way, but you are right that it is vital to take care of the problem completely the first time. For others who mentioned concern about mildew, it's true that mold growing in your bathroom can be a sign of a worse problem, such as thankful has suffered. However, shower mildew in and of itself is harmless and not toxic. It's important to recognize that catastrophic mold problems are rather rare, but they do happen. It's good to be on guard if you have symptoms that you can tie to your environment. (i.e. regularly feel better away from the home, symptoms started after moving into the home, a noticeable musty smell in the home, pet/child symptoms tied to the home, large areas of water intrusion etc.) Awareness and education are your best defense. It is quite common for certain people in the home to be more affected by mold than others. My father stayed in our home long after my mom and i had vacated because he didn't believe the air-testing report results that our house was uninhabitable. He later had partial hearing loss, memory loss, tinnitus, and rash associated with staying in the home. It's not always going to manifest itself the same way (or at the same time) in each person.

I think the causes of POTS vary widely, but it's true that any assault to your system (i.e. accident, surgery, trauma) can trigger it. I think it's natural to wonder about the long-term health effects of mold since Stachybotrys in particular has proven to be neurotoxic. I did a quick Google search and found a journal article which states that toxic mold-exposed patients had abnormal autonomic response. It's good that you were able to get out of that environment! I think that mold-avoidance is a great way to start the healing process. thankful - My family also had the burning skin and metallic taste that you mentioned (in addition to the fatigue and headaches i mentioned earlier). I'm so glad to hear you are having remediation done and have arranged for air-testing. It's awful to go through financially and emotionally, but it's good that you are informed and have made all the right decisions for your health. Have you looked into HEPA air filters? lieze - I totally know where you are coming from about the mice being a comfort. Smaller animals obviously are more susceptible/sensitive to environmental issues, so it is definitely a comfort that they are breathing the air you breathe and are alive and well! dsdmom - It sounds like you had multiple factors at play in getting sick. You're right that proper air testing for mold can be VERY expensive. If you really want to explore it further, there are do-it-yourself tests that can be cheap (but maybe not as reliable), or possibly you could stay with a family member or friend for a while to see if you feel any better. just some ideas! One thing i forgot to mention earlier is that remediation, remodeling, or tearing out toxic mold without professional know-how can often make the spore count in the air shoot up dramatically. If anyone has a major mold problem, it's best to let a professional handle it, like thankful is doing. It can be very dangerous to try to get rid of large areas of mold without the proper training and air-testing. Kristen

Hi all - As was previously said, it's super important that mold problems are taken seriously. Stachybotrys, Penicillium, and Aspergillus are neurotoxic molds. They are not your average "refrigerator" molds. If these molds are present together (usually with high levels of bacteria), they cause a synergistic effect, meaning that they become even more dangerous than they are alone. With neurotoxic mold present, it is not uncommon to have any one or combination of the following: fatigue, headaches, muscle aches, rashes, muscle twitching, mental fogginess, digestive problems, hearing loss, nose bleeds, constant dizziness, inability to multitask, disorientation, irritability, swollen glands, sore throat, frequent urination, sinus problems, memory problems, or the need to sleep constantly. There can be respiratory problems as well, but this is not an "allergy." It is a neurotoxic poisoning. Neurotoxins from Stachybotrys are used to develop biological weapons for war. They are nothing to mess around with. Getting proper air testing/remediation is extremely important if you are having symptoms. It is also important to know that not everyone exposed will react in the same way and with the same severity. Due to genetics or simply exposure time each day, some people may be much sicker than others. Also, the mold can be concentrated more in certain areas of the house or release spores more at some times than others. It is also important to be aware that even when the mold is killed/cleaned, mold spores still give off the toxins. You can't kill the toxins. It's very difficult to improve health when there is contamination of clothing, furniture, or anything with porous surfaces like paper or wood. These things can be contaminated with spores in the air, and they can continue to make you sick long after all visible mold has been cleaned. It is possible to become chemically sensitive after mold exposure, where triggers (perfume, cleaning chemicals, pesticides/herbicides, cigarette smoke) will cause symptoms. It is possible to have symptoms upon immediately entering a "sick building" if you are chemically sensitive. It is also possible to feel "ok" and gradually decline the longer you are in a "sick building." I have been through all of this - the medical/contamination/moving/chemical sensitivity/loss - all of it. It was over 11 years ago, but it still hits me hard emotionally when I hear about other people dealing with this. The best defense is to do a lot of research and to be informed about what you're coping with. Do not let anyone tell you it is an "allergy." An allergy to mold is very different from toxic mold exposure, and there are doctors who can diagnose and treat it. Here is a terrific blog/resource of a family going through treatment for mold exposure: http://moldrecovery.blogspot.com/ Please PM me if you have questions. My heart goes out to you! Kristen

Hi Elfie - I have a lot of empathy for you as I had the experience of having to transfer colleges and move back home. Only you can really make the best decision for yourself in the long run. That said, I strongly caution you to think twice before moving into a place with a serious mold problem. Certain kinds of mold can be neurotoxic and can make you very sick. Symptoms of mold exposure can also mimic POTS - such as fatigue, dizziness, etc. Has your family had air testing done? Could remediation be moved up and done before you go home? What may not affect your other healthy family members could seriously affect you on a long-term basis. Something important to think about before making any major decisions! Kristen

Salt packets?

I don't know specifically about histamine intolerance, but I would definitely suggest telling the tech and your doctor ahead of time that you have issues with reactions to medications. It's important for them to be aware so they can watch you carefully. You might also want to talk to your doctor about taking Benadryl (or something similar) before the test. I have heard of Benadryl pre-treatment for patients when they knowingly have to administer a drug that a patient is allergic to. Just a thought. Kristen

Waterbaby - It's so hard to deal with extraordinary life stress on top of coping with being sick. POTS is plenty in itself, right? I have been struggling with extraordinary life stress in more than one area, and it just feels like I'm being slammed by a hurricane. The way I cope is multi-layered. First and foremost, I pray - sometimes out loud, sometimes quietly, and sometimes in writing. I ask God for help. I study the Bible, especially the Psalms, because they echo so many of the feelings that I have. Secondly, I do what carinara said, which is to live in the present moment and focus only on one thing at a time. I can get immobilized by sheer panic if I look at all problems, expectations, needs, deadlines, and pressures as one massive issue. Maybe I can't respond to all emails, but I can respond to one. Maybe I can't do anything at the moment, but I can rest my body for tomorrow. Third, when I have energy, I try to make a tiny bit of progress in an important area of my life (for example, sorting mail). I haven't solved anything major, but it's a relief to just get something important done. Prioritizing helps. Saying "no" to unessential requests helps. Making lists helps (especially when I have brain fog and lose track of what needs to get done). Pushing myself too far will only backfire. I try to stick with making a snail's progress regularly rather than trying to sprint to the finish, using up all my reserves at once. Lastly, when something is out of my control, I have to leave it and try to put it out of my mind. It's like the serenity prayer: "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." Sometimes I can't do something alone - I just have to ask for help. There is also no guilt for "mental breaks" like getting lost in a mindless TV show or just lying down in the dark for a while to let things calm down in your mind and settle your system. Mental diversion can be quite healthy and helpful in moderation. Especially laughing at a comedy, "retail therapy," playing a game, solving a puzzle, or wasting some time - whatever temporarily relieves the mental pressure for you can be a huge relief and can recharge you to face life again. Hope it helps to know you're not alone. Be kind to yourself! You are doing the best you can! Kristen

I use the same Denise Austin DVD as futurehope. It's fantastic - especially the first workout which is pretty much all done lying down or sitting, so it's great for POTS. I've been using it for over 2 years and love it. You can get it at Amazon: http://www.amazon.com/Denise-Austin-Pilate...9487&sr=8-1 Or Barnes and Noble: http://video.barnesandnoble.com/DVD/Denise...n/e/12236116813

I think it's worth a shot. Once I started taking B-complex regularly, I noticed an improvement in my symptoms. It's a good supplement for nervous system health just in general. It's not a dangerous group of vitamins, meaning your body will get rid of any amount you don't need. I would recommend looking for a product with very few fillers as you might be sensitive to an inactive ingredient in the pills. Just my 2 cents! Kristen

ajw - I also had to leave grad school on medical leave and felt a tremendous loss of independence. I can relate to everything you said here-- about sorting through your school papers, about talking to your fellow classmates. You're right-- it is HARD! I've had a several years to let go and work through a grief process, and now that my life is redefined, I'm feeling better about myself and my future. You will make it through this rough transition time. You're not alone in your feelings. It takes great courage to face losses like these. Losing a position professionally is enough to throw most people, but losing health and independence too -- that all combines to be exceptionally difficult. Be kind to yourself and remember that you are STRONG to face this kind of adversity. Feel free to PM me if you want to talk more! Kristen

Hey Lisa-- How was your second test? That sounds like an awful experience with the first test. Sorry to hear you had to go through that. Does your doctor think this is related to your pregnancy or is this something that would happen to you with POTS in general? Kristen

Salt is only 39% sodium (the rest is chloride). This means that 10 grams of salt is only 3.9 grams of sodium (or 3900 mg). This really isn't that high considering that a 6-inch Italian BMT from Subway is 1770 mg. If you make it a footlong, it would pretty much meet your daily requirement. I had the same problem when my doctor first prescribed me 8 grams of salt per day. I was horrified!! I was trying to eat 8 grams of sodium and coming nowhere close. It was obviously gross and unhealthy to do that. Hope this helps. Someone on here helped me with this info back in August of 2005, and it was a great relief. Also, if you can't get to Subway, it helps to just add table salt to whatever you eat. I add it to toast, sandwiches, the water for boiling hot cereals...it really adds a nice flavor and you get used to it and do crave it after a while like Marcia said. Happy salting! Kristen

You know I'm thinking about you and praying for you, sweet Melissa!!

Ernie, what you went through is utterly evil and a horrendous violation, and to make matters worse, you have been victimized repeatedly afterward by the hospital's response, the police response, and having to see that man again. I am so saddened and angered by what's happened to you. What is even worse is that I'm not entirely surprised by the completely unacceptable response you've received. My family has experienced serious violations and crime that is unspeakable, and we have also been brushed off by police and those in authority. I understand your fear about the psychological label and think you were wise to think about that possibility when you were already taken advantage of in your vulnerable state. When you are in a situation like that, it can make you feel so utterly alone, and so I'm glad you felt safe enough to speak out here to get some support. The advice to call the rape crisis hotline (or visit a crisis center) is excellent because they will know the best way to support you. I have to say that I'm continually amazed by how people, who have the responsibility to protect, let us down, disappoint us, and perpetuate injustice by "looking the other way." It's easy for me to say to you what to do, but the reality of the matter is that it is not only very complicated and difficult to get the right help, it's also emotionally traumatizing to keep reopening this terrible wound. When you add your physical illness on top of all this, getting justice is like climbing a steep mountain. I will pray for you to get justice in this awful situation. Kristen

Great post idea! I take comfort in the verse: "In this world you will have trouble. But take heart! I have overcome the world." John 16:33 I just found a video last week that really encouraged me! It's of a man with no arms or legs. His name is Nick Vujicic, and his message is powerful and inspiring. Here is a link to a good youtube video of him... just seeing how he overcomes obstacles with such joy is incredible. (There are other related videos that show more of how he does things around the house.) http://www.youtube.com/watch?v=TtweZxNGk1Y His website is www.lifewithoutlimbs.org

A great point! It goes along with the whole "if you try hard enough, you can do anything" routine. It's just not always the case. There are real physical barriers in life that simply cannot be overcome by sheer will, and when you want to do something very badly, and are physically prohibited from doing it, the last thing you want to hear (implied or otherwise) is that you must not "want it enough." Which incidentally reminds me of the Hillary/Palin SNL skit where the Palin character says that anyone can be president if they want it badly enough, and the Hillary character starts laughing and saying sarcastically "Oh yeah, I must not have wanted it enough!" and rips off a piece of the podium in frustration. haha. Melissa, just a personal note to you that if there is one person in the world who could overcome an obstacle by utter determination and perseverance, I'd have to say that person is you. You're an inspiration to me in what you can do, considering what your body has thrown at you. Your presence on this board is a testament to how hard you work just to survive and, in the process, make life better for other people while you're here.

Well, I hope you are able to get some more answers. I did a search for occupational and environmental health around Melbourne, and I came up with these links-- http://www.coeh.monash.org/ http://www.med.monash.edu.au/epidemiology/...ademic/sim.html Hope this helps! Kristen

It sounds like you've identified a clear pattern. Is it possible that there is pesticide/herbicide spraying in your area for agricultural reasons? When I was diagnosed by a specialist in environmental medicine, it really helped me to manage my life. I was able to go to college and function well by avoiding problem areas. Unfortunately, my city began widespread spraying of pesticides for West Nile Virus around 2002, so that was unavoidable. Are you tied to the area at all? Have you tried staying with a friend or relative out of town for any extended period of time? It might be worth your while to seek out an environmental medicine specialist to see what they have to say. They can do specialized blood tests and possibly give you some more clues to help you solve this mystery.

About 10 years ago, I was very sick, but I felt 100% better when I moved out of my house and lived with my best friend. We had professional air testing done at home, and it turned out that our house had hidden toxic mold growing in the drywall. The dangerous neurotoxins from this mold were recirculated in our forced air system and made me sick. After this exposure, I subsequently became ill in areas that had been treated with pesticides. My symptoms primarily manifested themselves as severe fatigue, dizziness, and brain fog, along with other flu-like symptoms that would resolve when I changed my environment. I encourage everyone who notices a distinct and dependable pattern of improvement in symptoms upon leaving home to investigate possible environmental triggers. Certain (often overlooked) factors such as water damage or common chemicals can often affect our health without us even realizing it. I'd say go with your gut and continue to investigate what you do differently at home-- diet, water, exercise, air-- anything that changes. If nothing else, maybe see if another extended vacation improves your health!