Gena

Katherine, I know these are scary especially after you've been feeling good for so long. (I've been on the road of improvement as well and have had a few episodes of weird arrythmias that come out of no where lately.) I know it's hard not to think, "oh no, I'm sliding backwards down in the POTs hole," but I would tend to think that after such a long period of time of relatively good health and little symptoms that you will most definitely bounce back from these epsiodes, especially if you're not experiencing any radical changes in lifestyle or undue stress or change in diet, etc. Poohbear's suggestion of checking electrolytes is good and also you may want to consider trying magnesium citrate or oxide for those muscle spasms. It's not always safe to supplement potassium though, unless you're definitely low and your doc has said okay. The heat of the summer will cause me to experience weird sensations and potsy feelings more than the winter months. Perhaps it was awfully warm outside on the days you had these symtpoms flare up? Well, be sure and do all of the standard POTS therapies you can to keep you body in balance and just don't over do it. Sending healing hugs and peace of mind your way. Gena

I am continually keeping you and Jeff in my thoughts and prayers. Don't push yourself to do things that you don't have to. Keep your faith. Take a relaxing bath. Talk to a pastor. Light some candles. Read an inspirational book about healing. Do whatever it takes to find some peace and hope in the midst of these troubles. Sending great big hugs your way, Gena

It reminds me of the song "Beautiful, Beautiful, Beautiful Boy" from the movie Mr. Holland's Opus. Both of your children are so adorable. Congrats on bringing Alex into the world and I'm glad you are doing well overall. Keep up posted with more pics. Hugs, gena

To Emily and others who have posted on this subject... I have felt the same way. I have been hoping that time will heal the rift and the uneasiness that many of us feel. I think it will. As Tea and Merrill said, they weren't event there was an issue. I think in time we will all feel more comfortable again within the forum's new boundaries/guidelines. I think we are all still afraid of getting our "hands slapped" so to speak in front of others if we say the wrong thing or post an off topic subject. Don't get me wrong, I certainly understand the need for rules and appreciate Michele's hard work and diligence. However, I think Sunfish's idea of having a separate "Fun stuff" area might help resolve this dilemma and let us feel more comfortable about opening up and expressing ourselves once again. Anyway - just wanted to say I still think the world of all of you and I am so grateful this site exists. I'm sending out great big hugs, cookies and tea to everyone. Maybe we can have a "let's get re-acquainted party! Gena

Glad to hear your improving. I've been on that road of improvement as well and I just hope it will continue! It's the summer time that knocks be back a bit. Like you, I still go through periods of insomnia and fatigue. I started taking a powdered magnesium called Natural Calm mixed in warm water each night before bed the last 5-6 weeks and it has worked wonderfully for me. I have touted this product on other posts before, I probably sound like a broken record. (and no, I do not own stock in this company) It just works very well for me. We are all different though. Here's a link to their site if you're interested in reading about magnesium and its effects on the body. http://www.naturalcalm.net/importance.shtml If you think the yeast is contributing to insomnia, you may be right. It's one of the signs of candida overload. You may want to try cutting out yeast from your diet for a couple of weeks to see if you notice a difference in the way you feel. Good to hear that the beta blocker works for you, they wipe me out. Have you tried taking licorice extract in capsule form instead of the tea? Also, is there anything else in the tea that may be causing the migraines that you associate with this tea? I hope you continue to make improvements. I remember the first 3-4 months when I first got sick last year, and wow, what a difference between now and then. I am very thankful. Take care and keep us posted. Gena

I also have Interstitial cystitis and have had my bladder stretched. It was a great procedure that helped for a while, but I guess you have to get it done fairly frequently in order for it to work long term. I only had it done once. The procedure can often be done in an outpatient setting or at the doctor's office. It's nothing major. I hope it works out for you Ling. Gena

I also have MVP. I was dx'd at the Birmingham MVP and Dysautonomia center, but the doctor I saw there is now retired. I get flutterings and weird somersaults in my chest from the MVP and a host of other symptoms that can be MVP or dysautonomia related. Not everyone with MVP has dysautonomia, but it seems to be a common thread among those with dysautonomia. This condition is almost always completely benign. Gena

Hey Tea, Just wanted to let you know I've noticed your absence as well and was wondering if you were doing okay. Glad to hear you are taking care of yourself and not over doing it. (Sounds like you're working smarter, not harder! ) Look forward to seeing you back on the board soon. Hugs, Gena

I am exactly the same way that Katherine described above. Especially today. It's 94 here in northwest florida with a heat index of 102 degrees! If it stays below 85 then I'm okay. The heat definitely makes it hard for me to catch my breath. It's not like an asthma attack or anything though. I just feel like I need to breathe very cool air and taking hot air into my lungs makes me feel as though I'm not getting enough oxygen. I've only been like this since getting POTs. Gena

The BRAT diet is great when you're having digestion problems, but it's not good for long term, as you're not getting a full spectrum of nutrients. Actually most fruits (not all) are easily digested (because they are simple sugars) and usually empty from the stomach in 20- 30 minutes. Fruits with skin can slow down the process, due to the fiber, so I would remove the skin. Cooked veggies will be easier to digest than raw ones of course. Animal proteins take much longer to digest. Lacto-fermented foods are considered pre-digested due to the fermentation process (the bacteria breaks down the food) and they should be fairly easily digestible as well. Have you tried digestive enzymes? They will help your stomach break down the food and assimilate the nutrients more efficiently. I am sorry you're having such a tough time. Hopefully this is only temporary and will pass soon. Healing thoughts and hugs, Gena

Just a reminder to remember there is a difference between the actual amount/weight of salt (usually measured in grams) versus the amount of sodium that the salt actually contains (normally measured in milligrams). So if your're reading something on salt intake or getting advice from a doc, etc., just be sure to clarify this. It confused me at first, so I thought I'd share this. Gena

Julia, I wish I could take all your pain and sickness away. I just wanted to let you know your in my thoughts. If you continue taking an antibiotic, you may want to strongly consider taking acidophilus (probiotics) since the antibiotic will kill all of the good bacteria in your intestines, which can lead to diarrhea, yeast infections, etc. Just be sure to take it at least two or more hours before or after the antibiotic. Do everything you can to encourage the natural healing process in your body to take place (eat a healthy diet (dairy and wheat products create more mucus), vitamins, aromatherapy (ecucalyptus and peppermint help open the nasal and bronchial passages,) etc.) I hope you find good health and a doctor that takes you seriously very soon. Remember that we're here for you! Gena

Em- One more thing I want to say about the Natural Calm...I was hesitant to take the full dose of 600 mg (3 tspns), as sometimes getting too much magnesium can cause loose stools as the others have mentioned. I slowly worked my way up to 3 tspns with no problem - no diarrhea or any side effects. I find the full 3 tspns is the most helpful for me. If I take too little, it doesn't quite do the trick. As you know I don't like to take any meds, but as you probably remember I did take Klonopin for a while during the winter when I was having insomnia, just to "break the cycle" of insomina as Geneva put it. It only took a half of a .25 mg sublingual wafer of Klonopin (the lowest dosage made) to give me a good night's sleep. A few times I would take the other half in the middle of the night for good measure. I took it for several months and then slowly weaned myself off of it. I keep some in my night stand just in case I ever wake up with bad tachycardia or anxiety. I used to take melatonin many years ago, but it made my dreams way too vivid, so I had to quit. I hope you find something that works for you real soon. G

Linda I'm so sorry you're going through this. What a scary situation. My BP has gotten really low before too, although not quite as low as yours and I've come close to passing out, but haven't (knock on wood!). Have you talked to your doc about getting a standing order for IV fluids? That way you can go to the ER and they can hook you up with fluids and hopefully they won't give you a hard time. IV fluids do wonders for many of us, especially when your BP is down that low. Also, olives are usually very high in salt so that's probably why they make you feel better! If your BP continues to stay down that low, you are endangering yourself, especially if you live alone and continue to pass out. Just my humble opinion, but it sounds like you'd really benefit from some IV therapy. Best wishes, gena

Hi MaryJo, Welcome to the forum. I have POTS, MVP and fibro and I am currently medication free, but I do not have EDS like you. You'll find there are others on the board that are med-free or close to it. I know EDS can cause a whole host of other painful problems. And GERD can often be a symptom of POTS, whether you hav EDS or not. I would follow your doctors advice for a little while to see if the non-pharmaceutical measures work. In addition to increasing fluid and salt intake (natural sea salt with all the minerals is best), you may also want to try adding an electorlyte drink to your regimen, salty broths, light exercises (whatever you can tolerate) a good multi-vitamin and healthy diet and compression hose. As far as the GERD goes, often times this is best manged by changing your diet and avoiding the foods that aggrevate this condition. I know some people have GERD no matter what they eat. I take digestive enzymes and natural acid easing supplements if I start having digestive problems. Don't get discouraged! You may be able to get your life back and manage your symptoms with a few simple changes. If they don't work, then you can always talk to your doc about trying some of the basic POTS meds like flourinef, BBs, SSRIS, mestonin, etc. I have come a long way since last summer. I still have relapses every so often and deal with symptoms every day, but I'm able to work full-time and live a fairly normal and active life. Best wishes to you, and I'm glad you found us!

Emily, I can totally relate with what you're going through. (By the way, the Dexedrine could certainly be a culprit. I would stay away from that.) Lack of sleep is the worst feeling, because it messes up your entire day, you feel irritable and spaced out and just not yourself, and then you start dreading nightfall because you think you'll be in for another restless, sleepless night. The way I could tell if my BP was dropping too low is because I'd wake up with tachycardia (my body's way of saying hey, let's get the BP up, it's dropping too low here). Not major tachycardia, but enough to make me get out of bed and go do something else until my heart started to calm down. Some nights I would just feel wired and tired at the same time and when I did sleep I'd have nightmares. The good news is that for the last 5 weeks I have been sleeping very well. I don't think it's a coincidence, but five weeks ago I started taking Natural Calm (raspberry lemon flavor). It's a magnesium citrate powder that you mix in warm water and drink like tea. I drink it right before bed and It's worked wonders for me. I was very skeptical at first, because I'd tried all of the usual tips for getting a good night's sleep like avoiding caffeine and alcohol, meditating before bed, exercising well in the afternoons, eating a light meal at dinner (not too close to bedtime), etc., none of them really did the trick for me. So needless to say, I'm very pleased with the results from this product. (I'm praying that it continues to work so well!) Here's a link to the website. http://www.naturalcalm.net/breakthru.shtml You can check it out and see if it's something you may want to try. (I believe Blackwolf or Earth Mother initially recommended this product.) You may also want to try the other tips I've listed above. I also sleep better when it's very cool in my room so I turn my A/C down a degree or two cooler at night. Also- I took Ambien many years back and my body got used to it really fast and it became totally ineffective for me. It wasn't intially designed to be taken for long-term use. Hopefully Em you'll be catching some good ZZZZs soon. I'll send some deep sleep thoughts your way. Hugs, Gena

I get the slow, forceful heart beat and pounding in my head very often, in addition to the tachycardia and arrythmias. Like Poohbear said, the symptoms of dysautonomia can run a wide spectrum. It's always a good idea to rule out any other possible causes before chalking it up to POTS though.

I don't necessarily have a flare-up of POTS symptoms when I have allergies, but I have noticed that my hay fever/seasonal and animal allergies are much more pronouonced since getting POTS last summer. My childhood allergies had subsided greatly and then came back with a vengance since POTS. I take MSM, and quercitin which help control the histamine reactions, and I also use an air purifier. If I'm really bad, I take Benadryl --without any problems. It's Sudafed that can cause tachycardia. Gena

Poohbear, What Mayo did you go to? I went to the one in Jacksonville last Sept. and I thought the cardio there was awesome. Very understanding, knowledgable and sympathetic. He didn't even charge me for the visit! I did NOT like the neuro I saw there though. He was arrogant just like your cardio was. I am sorry you had a bad experience. Did you see any other docs besides a cardio? It's frustrating to spend all that money and be treated so disrepectfully. I hope you were able to come away with at least some other answers via testing, etc. Gena

Steph- if you have possible absorption problems, have you tried any liquid or sublingual vitamins? Kite you are a veritable fountain of great info, thanks for sharing your knowledge. (Just a note - Some of us cannot tolerate any sugary substances, whether it's honey, molasses, fruit juice, etc.) But I agree about the wonderful nutritional properties of honey. I buy only the raw, unprocessed honey, as this retains all the natural healthy benefits (I use it in my tea or in dessert recipes). I have gotten used to not adding any sweetener substances to my smoothies. Although ocassionally I will use some agave nectar, which has less of an effect on blood sugar. Emily - I use anywhere from 2 tsps to 1 tblspn in my smoothies. I alternate between olive oil and coconut oil. Sometimes I even use grapeseed oil. The coconut is great, as it adds a nice little coconut flavor to the smoothie (it's especially good with strawberry/banana, pineapple or raspberry smoothies). The olive and grapesee oils add no detectable taste at all. And yes, you're right, by adding fat and protein, you can slow down the rate of absorption of the sugars from the fruits so that you don't get that blood sugar spike. I use Nutribiotic Rice Protein, vanilla flavor and it's very good. However, they use enzymes to break down the protein in the rice and there's a very slight possibility that a trace of gluten could come from the enzymatic process. But I've never experienced any problems from it and I'm very sensitive. I am experimenting with other rice protein brands right now, just to see if I like anything else. So far, I like Nutribiotic the best. I tried Jarrow brand and it was yucky! Take care all, Gena

Ernie, The others all have great suggestions. I just want you to know that you and your family are in my thoughts. You've been through so much, I can't imagine how difficult this must be for you. Sending you lots of love and hugs. With deepest sympathy, Gena

HI Steph, So sorry to hear about your neck and head pain. How awful. Whiplash, huh? Have you been dancing a little too energetically or riding roller coasters lately? Did you try getting some different pain meds or figure out which med you were allergic to? You sound like me, inevitably when I try a med that is supposed to give me relief from something, I get some crazy adverse reaction to it and I'm 10 times worse off than before. I was going to call you today, but it sounds like you just need some peace and quiet. I'll try to ring you tomorrow to see if you're feeling any better. Magnesium citrate is also a great relaxer. (I take Natural Calm in powdered, berrfy flavor, you mix it up in hot water and drink like tea). I've been having severe lower back and hip pain this past week for some reason, so I feel some of your pain, just in a different place. Hope you find relief soon. take care, gena

I'm sure Kite will offer you some good answers, but in the mean time, I'll put in my 2 cents! I know it can be so frustrating trying to put on weight. I have been very thin before and still would like to gain about 5 pounds. I agree with Dayna about the juicing. It's easier on the stomach to digest the cellulose/fiber and carbs in the veggies by juicing them first, since the mixer breaks down the food for you. My first question for you is have you tried digestive enzymes? (I would recommend getting them at a local health store). They make some with HCL (hydrochloric acid) and some without HCL. The enzymes will help your stomach break down the food and allow your intestine to absorb nutrients from the food better. Many people with GERD or acid problems actually have insufficient acid for digesting foods. So you can try a digestive enzyme with HCL and if it causes you problems, try one without the HCL. (I like Acid Ease enzymes (without HCL) and I also use Nature's Sunshine Food Enzymes with HCL.) I know you're trying to gain weight and processed, fast food is certainly an easy way to do this, but may be contributing to your GERD, especially if you're eating anything greasy or fried. To gain weight, I make a calorie and nutrition packed smoothie in the mornings using berries, bananas, rice or almond milk, rice protein powder, and coconunt or olive oil. It comes out to somewhere around 600+ calories and is high in good fats. It's much more than I could obtain by eating in a bowl of cereal for breakfast. By doing this everyday, I managed to put on about 4 pounds in a couple of weeks. I know that's not much, but I was thrilled, because it's so very hard for me to gain weight no matter what I eat. Hope you find a solution to your tummy troubles soon. I think if you try juicing first and then slowly work your way up to cooked veggies and then finally raw it should help. Your stomach needs a chance to heal and to reduce the inflammation and stress/workload on it. Usually digestive enzymes seem to help a lot.

I buy my vitamins (NSI Women's mulit-vitamin, version 4) from vitacost.com online. They have a complete spectrum of high quality vitamin and minerals, plus some adaptogenic herbs, alpha lipoic acid, coq10, priobiotics, antioxidants like lutein, lycopene, grape seed extract and much more. There is usually a big difference in vitamins. A lot of the cheaper ones, (not all of them) are chemically processed and made with unnatural binders, fillers, etc. and the vitamins are not very bioavailable (not absorbed well, usually due to the form of vitamin or mineral that is used). My mom and brother take "Natures Plus Source of Life" Vitamins. These are great because they're made from whole foods, not extracts, are readily absorbed by your body and give you an almost instant boost of energy. However, I cannot take these because they do contain small amounts of gluten from wheat, oats, barley etc., since they're made from whole foods. If you want energy and are not worried about food allergies, then I highly recommend these. I agree with Kite about the best form of vitamins comes from eating a balanced diet of fresh foods. We have to give our bodies a good foundation with the proper foods first. I also take fish oil and/or flax seed oil, as these are good sources of essential fatty acids (omega oils). Hope you find the vitamin brand that works best for you. Sometimes it's just trial and error.

Wow Amy, it sounds like you are on the right track. Thanks for sharing that with us. I wish we had an "integrated medicine" program in my neck of the woods. I share a lot of that anxiety that you feel. I go through periods when I don't feel it at all, and then I'll go for days, or weeks where I feel very anxious and wound up. I've been to a session of chakra/pranic healing before and it really felt incredible. The lady I went to had incredible credentials and came highly recommended, but because she is 2.5 hours away and my insurance doesn't pay for things like that, i haven't been back. I really should go again, because it was an amazing experience. It also depends on the practitioner. (when if first heard about this therapy I was very skeptical, but I'm always open to try new things and I'm glad I did) I take many of the same supplements as you do as well. I really notice a difference if I don't take my magnesium at night. Like tonight, I forgot and I've been tachy all night and couldn't sleep. Well, I'm excited for you. I hope the exercise helps you gain your strength back. Are you still avoiding sugar? I was so good for nearly a month and then fell off the wagon when the PMS kicked in. I feel so much better when I'm not eating it though. Take care and keep us posted on your progress.