Gena

Tearose, I definitely agree that you've been a great buddy of support to everyone on this forum. You always have such kind and comforting words to say. Happy Dinet Anniversary. Cheers to you!

Hi Nina, In spite of all your pain and trials and tribulations, your determination to find a positive, cheery note about something never ceases to amaze me! I am very sorry your EMG was so painful. I had two of them several years ago and hated every second of them. I had a weird pain in one of my arms, too, for about a day or so following the EMG, and then it went away. Just wanted to let you know I'm sending comforting, pain-free thoughts your way. Hope you find some relief soon.

Ribose is one of the many super sugars that are really starting to take a spotlight in medicine research. This area of study "glycobiology" or "glyconutrients" looks at several neccessary sugars/carbs that our cells need to communicate. Many of these super sugars have been show to inhibit tumors, cancers, and bacterial and viral infections in animals and now humans. Ribose, specifically has been shown to increase energy. There's a book called "Sugars that Heal" if anyone is interested in reading more about these "good sugars". (These aren't sugars that you get by eating candy bars! So don't rush out and buy a jumbo bag of Snickers! I take a product called Ambrotose; which has all the necessary sugars for our cellular communication.

I'm curious if this researcher mentioned what "biological problems" could be occuring that would "make our bodies lower blood volume to compensate?" It seems that lowering blood volume in a person starting out with normal blood volume would only serve to be detrimental to the body, so I wonder how this response from the body would actually be beneficial in any way. Low blood volume causes so many bad symptoms, I don't see any good in it?? Just curious if the researcher elaborated on this at all? I know you're just relaying info here, so don't take these questions personally.

This happens to me too. It's frustrating. But it goes in phases for me - I don't have it every night. My HR, if it's too slow will waken me just as I drift into REM. And if it's too high, I often start dreaming that I'm having symtpoms and that will awaken me.

Michelle, Thanks for posting this. This is so true. Imbalances in the gut mircroflora and an overall unhealthy diet and poor digestive system act as the catalyst for the majority of allergies, diseases and chronic illnesses to manifest themselves in our bodies. After all, 70 to 80% of our immune system is in our gut! Taking probiotics (acidophilus) to help replinish the good bacteria in the intestines/bowels can be very beneficial.

HI Emily, I didn't get to post any well wishes prior to your surgery, but I just wanted you to know I kept you in my prayers. I sending healing energy and happy thoughts your way. We'll be glad to see you posting on the board again real soon. Rest easy and heal quickly! Here's a funny little healing poem I found on the net....just wanted to send it your way... It was back in the days When the world was brand new, That Adam and Eve Their first gall bladders grew, For they lived in Eden, And spent the whole day Cavorting in naked, But innocent, play. God gave them the things That they needed to live And said, "There is one thing I just won?t forgive." "You can eat your fill Of the earth?s finest things ? Eat all the shrimp cocktail And buffalo wings." "Eat all the French fries, The doughnuts, the scrapple. But you must stay away From the juicy red apple!" "No problem, man!" Replied Adam with glee. "The apple, it holds No attraction for me." But a snake cornered Eve, And it hissed, "Apple?s yummy. A nice juicy fruit That feels great in the tummy!" Eve grabbed for the fruit. In her hand she did take it. She bit off a bite, Then yelled, "Adam! You?re naked!" "Try it," said Eve, "and I?ll look naked, too!" And so then, to Adam The apple she threw. God just had walked in When he took a big bite. "NO" thundered God, Causing Adam a fright. "Now I am mad. You?ve done yourself in With this, the most stupid Original sin." "And how shall I punish? Well, if you must know, You now an absurd Little organ will grow." "An organ quite nasty That?s loaded with bile. It will serve no real purpose, Except to cause trial." "Yes, that will I do, And that will end the matter." So Adam and Eve, They each grew a gall bladder. And I do regret That we still have to pay For this stupid sin Until this very day. But the worst is now over, Recovery awaits, And soon I just know you Are going to feel great! ?2001, Deborah Taylor, David Willis

I second Opus's remarks about nutrition. I don't want to steal her thunder, but just wanted you to know that in previous posts she says the metabolic typing diet really made a difference in her life. I'm sure she can offer you great insight into this. I still have not tried that specific kind of nutrition plan, however, I truly feel that eating the right food that is right for your own body can make a huge difference. You can buy the book called The Metabolic Typing Diet at Amazon or most any book store. I am sure Opus can provide you with a link to a good site as well, I can't find the one she sent to me. Here is one I found on the net, but I don't believe it's the link she posted a few months ago. http://www.metabolictypingdiet.com/index2.html But I will say this....the basics of any good nutrition plan are cutting out refined sugars, hydrogenated oils, processed foods, reducing or eliminating caffeine, and reducing the amount of simple carbs and including complex carbs, plus a good multi-vitamin and omega 3 oils (from flax seed or fish) and added calcium for women. Also eating foods that don't cause big spikes in blood sugar / insulin production, as this has been shown to shorten our life span. And we can't forget fresh air, lots of pure water and exercise (within your limits). And if you can afford it, eat organic whenever possible! That's my 2 cents!

Hi Radha I am not familiar with octeotide, but I wanted to respond real quick before I'm off to bed -- mainly to bump your post up since it's not gotten any responses. Hopefully someone out there is familiar with this med. The other reason for answering is to suggest trying a meal replacement drink ( you may have done this already). You can buy them pre-mixed or buy the powder and mix it up in juice, water, milk, etc. They should have a all the essential vitamins, minerals, calories, fat, etc. that you would normally get in eating a nutritious meal. Maybe your heart wouldn't react so badly to something liquid?? Perhaps you could drink these until you find a med to help with blood pooling, etc. Whenever I eat a high carb meal or give into my craving for a candy bar, I always get those same painful, forceful heartbeats and feel awful afterward. I'm so sorry to hear your having problems eating anything at all. Have you tried any other meds for blood pooling like proametine or mesotin? ( I know I didn't spell those correctly, sorry Well, I hope someone out there if familiar with octeotide and can offer you some guidance, b/c we don't want you getting any skinnier!

I have had twitches for several years, all over my body, including chest, long before I ever got POTS. The twitches were really aggrevated whenever I ate anything with gluten (wheat, rye, barley, oats). I finally figured out I had celiac and the twitches calmed down significantly after going gluten free. The twitches still flare up whenever something in my body is out of whack..either hormones or diet...can never quite figure out what triggers them now. It sounds like you have a lot of anxiety as well. I have MVP and POTS, and anxiety often goes with the territory with these conditions. If yoga and meditation don't work, you may talk to your doc about an anti-anxiety med. I started taking Klonopin at night and it works wonders. When I first got POTs symptoms last summer I was anxious all the time and was afraid to even go anywhere b/c I thought my heart would go into tachycardia. I even had a few panic attacks and I'd never had one in my entire life until POTS and MVP. If you do have any dysautonomia, I highly recommend the book "The Mitral Valve Prolapse Syndrome/Dysatuonomia Survival Guide". It's great, even if you don't have MVP. IT has a bunch of real cases from real people who explain their symptoms and what their life is like. When you read it, you say, hey, that's me, I feel just like that. It also explains the mechanisms that cause the symptoms and how to handle them. Has a lot of great advice. Hope you find a good doc. Best wishes and take care.

HI Merrill, I hate it when I lose a post after typing for soooo long! But I just wanted to let you know that my holter monitor showed a high of 144 (I believe it was around 2 am) and a low of 38 (around 4:30 a.m.). I can't remember what the average was but I believe it was about 70 something. I searched for my print out on the results, but can't find it. Those are the numbers I remember though.

Hey Danelle, I know what you mean about feeling like it's the first time with arrythmias, even though you've gotten them hundreds of times before. My heart has been skipping and doing weird rhytms today and it is definitely scary. I do find that taking some magnesium can be very beneficial for heart rhythms. I recently started taking it as part of my liquid calcium supplement each night before I go to bed. It has helped alot with the skipping and being out of rhythm at night. Hang in there and just know that we're all here for you. Don't feel guilty about not posting in a while...we, of all people, understand!

HI Miriam, In addition to the things you mentioned, I know that having a letter stating your condition and any other accomodations you require might be a good idea. Also, I know others have suggested taking Xanax or maybe Klonopin just before flying to help ease anxiety. This topic has come up several times in the past. I am pretty sure there was a recent post about this just in the last few months. If you do a search on flying you can find probably find many helpful posts. I would do some further research for you, but I can't because I'm at work right now and have to get back at it! I can relate to your concerns though. I've never had a fear of flying until I was diagnosed in July with POTS and MVP. I'm afraid I'll panic and flip out on the plane and really embarrass myself. It sounds silly, but true! I will be flying to AZ on vacation in May, so I'll be reading up on those previous posts as well! Take care.

I get severe headaches in the back of my head too, since having POTS. Have never had these types of headaches prior to POTs. My MRI of neck and head were fine though.

Sorry to hear about your frustration with the TTT and the docs. I agree that you should find a specialist in dysautonomia. In the mean time, try increasing your fluids and salt intake to see if that helps your symptoms at all. You also may want to try drinking an electrolyte drink like Gatorade in addition to your water. Heat can definitely trigger dysautonomia symptoms - so limit your time in the heat if possible. If you have a BP and HR monitor at home, you may also want to record some measurements while your lying down and standing up and throughout the day to show your doctor. Keep us posted and good luck.

I am so sorry to hear about you and your husband. I agree with Katherine and Geneva about the natural stress relieving methods and even the Xanax if you need something to get you through really stressful times. Stress affects me greatly, especially if I get caught up in my job and stop taking the time to take care of myself. Yoga and meditation work wonders for me. Chronic stress affects my symptoms, but I even get adrenaline surges in temporary stressful situations, like the other day a policeman passed my car and turned his sirens on. I thought he was pulling me over, but he was after someone else. But my heart started racing uncontrollably and it took a little while to calm down. I thought to myself - how silly, I wasn't even speeding, and the policeman wasn't after me, but the way my body responded, you'd think I had just robbed a bank or something! Adrenaline took over my body again when we were having thunderstorms in the area recently and they issued a tornado warning. I became absolutely terrified and I literally thought I would have a heart attack becuase my heart was racing so fast. I have never been like this before I had POTS. What a bummer. Hang in there and try to take some preventative calming measures. Sending lot of hugs your way.

I'm really glad to hear your feeling a little better. I just have to reinforce what the others said about the lying down part. Some of my worst symptoms happen to me in the middle of the night while lying down. Sometimes just rolling over from one side to my back causes tachycardia, dizziness, sweating, which leads to panic and more tachycardia, etc. My neruo, Dr. Cheshire, at Mayo in Jacksonville said he consulted with Dr. Low regarding my case and said they feel that I didn't have POTs because I often experience symptoms while lying down. I think their "conclusion" is a load of bull, because I have other doctors who say otherwise. Anyways, I don't think Dr. Low realizes all of the people with POTS out there that experience symptoms in various positions and that it doesn't just happen while standing. Definitely keep the salt and fluids going. I don't take any meds, but recently started taking a small dose of Klonopin at night and that helps keep the panic at bay if I wake up with tachycardia or dizziness. It also helps me sleep better and lessens the severity of the episodes.

Hi Ben, You are definitely not alone when it comes to many of the symptoms you're describing. Don't chalk it all up to "anxiety" as many docs would have you do. I can identify mostly with the breathing issues. There are many, many days where my body "forgets how to breathe." I have to manually breathe in and out because my body is not on auto-pilot anymore. It's a weird feeling. And even though my cardio says I have very large, clear lungs for my small size, I can't do the very deep breathing I used to be able to when I meditate for example. Often it seems to make my symptoms worse and cause chest/heart pain. However, there are other days my autonomic system is in sync and I can breath deeply just fine. I really don't think it's anything to worry about. It's just par for the course when you have autonomic and other issues. Uggh! (I love the part where you mentioned breathing to the rhythm of the music...I caught myself doing that the other day...how funny! And, like you, I get awful headaches like I never had before. A lot of pressure in the base of my skull and a band around my forehead. And indescribable type of pain I guess. I think you'll find that many of us can relate to a lot of the symptoms you posted. Trust me, we don't think you're "weird" or just "anxious" for posting these questions. It's often comforting to find others who can relate to your symptoms and to know you're not alone!

Hi there. I have a friend who has ADHD and has symptoms very similar to yours. I know it can be really frustrating. Before considering natural or pharmaceutical approaches, you may want to examine your diet first. You might want to eliminate sugar, caffeine and any chemicals such as nitrate or nutrasweet and food dyes. These things can often aggrevate symptoms in ADD and ADHD. You may also want to consider adding a fish oil capsule to your diet (it has omega 3 (EPA and DHA) essential fatty acids in it that are very important for proper brain and nerve functions). I would try those things first to see if they help. Give it at least a few weeks to see if there's a difference. Other natural supplements that are often used for ADD and ADHD are GABA, SAM-E and acetylcholine. There's also a natural product called "Attend" from Vaxa International, specifically designed for ADD/ADHD. As with all natural products, especially combinations of herbs, amino acids, etc. make sure there's nothing in it that would aggrevate your dysautonomia or interfere with any meds you may be on. Hope you find a solution that works for you. Diet is always an area to address first though!

You may also want to consider trying a natural alternative to Prozac, that's called SAM-E. It has virtually no side effects and does not interact with most medications. It's proven very effective for depression and mood disorders. It's prescribed more often in Europe than any other pharmaceutical anti-depressant. You can get a good quality SAM-E at the health food store. They must be enteric coated in order to be absorbed properly. You can talk to your doctor about it. My mom switched from Prozac to SAM-E a few weeks ago and she says she's doing fine. When she was on Prozac, she was having days of that rage feeling you mentioned. Hope you find the best solution for you.

Persephone, I am so happy you had a great experience with your new doctor. Yes, the internet and this forum are truly a blessing! I know it's such a relief to get a diagnosis. And what a great idea to email your symptoms to him ahead of time. What a time saver that is, instead of having to take up so much during the appt. going over our litany of strange maladies! I hope he was able to provide some insight to your plan of treatment. It's great to have a doc on your side who know his stuff. Take care and keep us posted.

I know it would be a long drive for you, but the Center for Dysautonomia and Mitral Valve Prolapse in Birmingham, AL is a good place to start. I saw Dr. Sawyer there, she also has dysautonomia and so she can truly empathize with her patients. They do heart ultrasounds, a modified version of the TTT and stress tests at the facilities. Not as sophisticated as Mayo, but they have good physicians and nurses there. I believe its listed on the physicians list link that Michelle posted for you.

Hi Em, Just checking to see how your doctor appt. went today...were you able to get him/her to perform some further testing on you? I sure hope you find the source of your pain and a solution very soon. I hate to hear that you're in so much pain. Just curious if you've had your pancreas checked out in addition to your gall bladder? Keep us posted!

Hi Lisa, Sorry to hear you have to give up your job. I will pray that you will get your insurance and that you'll be able find comfort and healthier days when you don't have the pressure and stress of going to work each day. I am sure it's not easy to give that up, but when a door closes, God opens a window for us. Take care and keep us posted. Gena

Hi Ben, Welcome. I enjoyed reading your post and your English sense of humor. A good sense of humor will definitely get you through many of the "POTS" holes in life! I couldn't tell from your post if you have definitely been dx'd with POTS yet, or that you feel you have POTS based on your symptoms but the doctors don't believe you? Has anyone done any of the basic tests, such as a tilt table test? I know it can be so frustrating -- even here in the U.S. I had to basically diagnose myself and take the literature I found from the internet to my doctor. It was only then that he finally agreed to send me off to specialists for testing. Don't give up hope! There is bound to be at least one doctor in all of England who is knowledgable and open minded enough to listen to you and do the proper testing. Here's to a healthier, happier new year! Feel free to vent or ask questions on the forum anytime...that's what it's here for!