Patricia Gallup

I REALLY hope you had permission from Dr. G's family to write such personal information about him. Otherwise please remove this post, as there have been problems with rumors in the past and I don't think this forum is the place to continue to spread them. What I do hope is people respect his request for PRIVACY and let him get through this horrible time. ---------------------------------------------------------------------------------------------------------------------------------------------------- Per the forum rules: Hi everyone! Our forum guidelines have been updated to include the sentence, "Please do not post information regarding anyone else's health without first obtaining that person's permission." Thanks for your cooperation. Michelle

Thank you for this post, as I had seen the movie in the theater and felt comfortable discussing it with everyone and singing its praises everywhere, except a place like here, because it so saddens me when people make comments on subjects without actually SEEING the film. My wish is that people would put their political beliefs aside, as I most certainly did and was never a fan of Michael Moore, until he made this movie with purely altruistic intent, and simply WATCH the film before discussing it. I believe this should be required viewing for college students, if not everyone, as it's a true eye opener.

I also responded in your other post in the other forum. Hope your doctor gets back to you because as I said my daughter has been getting tubes an average of twice a year for a decade or so and never has pain after procedure or any of the symptoms you are describing. In fact she actually looks forward to getting her tubes because of the relief they give. She has hearing loss that she doesn't feel is made better when the tubes are in, except she doesn't get the congestion she is susceptible to without the tubes, which makes her hearing worse. Perhaps it's because there is only one tube in that your ears are a bit "off balance" if that makes any sense?

My daughter gets tubes in her ears everytime she flies and when her allergies are bad about twice a year. She has eustucian tube disorder due to POTS and EDS and had chronic ear and throat infections as a child that have completely stopped since getting the tubes in. She gets them in office, no anesthesia, absolutely nothing but alcohol to sterilize her ears which makes her dizzy only during the procedure due to the smell. If this is so painful I would highly suggest a different ENT as she's been doing this over a decade and never has pain or prolonged problems after insertion. And even insertion is not "fun" for her but no big deal anymore as they bring her such relief a few minutes of pain is nothing compared to not having the tubes. She also has about 30% hearing loss but no reason was given for this. I'm glad you decided to try them dizzygirl as I believe I suggested them to you before as they have been such a Godsend to my daughter. Hope they work for you. I wonder why they are only doing one at a time? My daughter doesn't think they'd have any effect on her if she only had one since it's an equal problem in both ears.

If anyone is curious enough to read some books about the manufacturing of pet foods, 2 excellent books are Raw Meaty Bones by Tom Lonsdale; and Food Pets Die For by Ann N. Martin. In my personal opinion, and not trying to shove that down anyone's throats, just giving info I have found very informative, I wouldn't feed my pets any brand of food that didn't comply with AAFCO standards, as they really look to protect what goes into the food and how it's produced. For example many would be shocked what can be construed by many companies as meat by-product (a very common ingredient in pet foods AND treats), and road kill is allowed! Also I feel if you are buying cheap food for your pets, you're getting what you pay for, and that isn't much. Many trainers and experts recommend paying the most you can with a reputible company to ensure your pets are getting what's best for them. Foods that are AAFCO approved are not hard to find, nor do I feel they are extravagent costs to ensure they meet the proper nutrition of what we consider family members. Furthermore, if you DO want to make your own dog foods, some excellent recipe books, and food and treats that comply with AAFCO, come from Three Dog Bakery link: http://www.threedog.com/, they have the Three Dog Bakery Cookbook link: http://search.barnesandnoble.com/booksearc...p;pwb=1&z=y as well as Cooking The Three Dog Bakery Way: http://search.barnesandnoble.com/booksearc...18190&itm=1 that have been approved by our dogs, as well as extended family and friends' pets, and making pet treats are excellent homemade gifts in my opinion too! So sorry and sick about all these pet losses, and hope they get to the bottom of the problem soon, because it seems the recalls are going to keep coming. From the AAFCO.org website what they're about: The term AAFCO stands for the Association of American Feed Control Officials. A basic goal of AAFCO is to provide a mechanism for developing and implementing uniform and equitable laws, regulations, standards and enforcement policies for regulating the manufacture, distribution and sale of animal feeds; resulting in safe, effective, and useful feeds. The Association thereby promotes new ideas and innovative procedures and urges their adoption by member agencies, for uniformity. Purpose and Function of AAFCO: The purpose of the corporation shall be to establish and maintain an Association through which officials of any state, dominion, federal or other governmental agency and employees thereof charged with a responsibility in enforcing the laws regulating the production, labeling, distribution, or sale of animal feeds or livestock remedies may unite to explore the problems encountered in administering such laws, to develop just and equitable standards, definitions and policies to be followed in enforcing such laws, to promote uniformity in such laws, regulations and enforcement policies, and to cooperate with members of the industry producing such products in order to promote the effectiveness and usefulness of such products.

I am sorry to say cardiactec, I feel that statements you are making about ssris widely contribute to the stigmas attached to mental illness and that truly saddens me. I hope you realize that anxiety, anorexia, and the others you mentioned ARE ALSO DISEASES like POTS, and perhaps doctors aren't ALL the "she must be depressed or anxious" diagnosers that you are implying, maybe they are trying their best to help someone with a hard case. For those that say they'd never ever try an SSRI, I agree with those who say they'd rather TRY to feel better, and as Katherine said MANY do feel better, than have one, or a few, medications listed on their history they are using off-label. Please explain to me why all the top ANS docs in the WORLD prescribe these meds, do they really think we're all anxious and depressed? I think not, I think it's because what happens in our bodies happens to mirror what happens to people who have panic attacks. And even IF our physical ailments cause us to have depression or anxiety WHAT IS SO WRONG WITH THAT? My daughter and myself have tried the SSRI's and my daughter the SSNRI's without success, but that doesn't mean we believe the docs think we're anxious and depressed, it means we wanted to feel better, and if one would've worked I would gladly take it daily. We also seek counseling for living with chronic illness and could care less that it's in our medical records. We are sick, and seeking help to learn to cope and ways of getting through daily life in a society where illnesses are thought of as weakness is something I'm PROUD to have in my medical record because it shows the great lengths I'm willing to go through to be as functioning and healthy as I can be. It actually makes me wonder from a psychological standpoint why some are so paranoid about what's in their medical record, and as I said just really sad that sick people attach stigmas to other sick people. Cardiactec you have even said you fear the next time passing out, don't you find that to be similar to being anxious? My daughter has been passing out since she was 8, she has never stopped living life because she FEARS something that might not happen on any given day, and if she does pass out, it happens, she has POTS. I am just so baffled that someone "who works in the medical field and knows how it works" would make such statements that are so negative to people who deal with depression and anxiety, as well as those who take those meds to help with their POTS. I am shocked that YOU seem to be one of those who is NOT "POTS literate" if you believe they are "throwing anxiety and depression medications at any ailment they don't understand" since these medications are in studies to prove they work for POTS, AND the most "POTS literate" docs in the world prescribe them daily. My daughter and I use Procrit OFF-Label with GREAT success for our POTS, I wonder if you have any idea how many tens of millions of dollars it takes to get FDA approval for an add-on usage to a medication? Would you not take Procrit because you fear being labeled as a cancer patient? Because that is a disease just like anxiety and depression is? I am just personally glad that my family shares the philosophy that we'd rather try ANYTHING to FEEL BETTER than worry what others think.

You need a referral from another doctor calling Dr. Grubb's office on your behalf, stating that you have dysautonomia, or strongly suspected to have it, and they will set up the appointment if he will/can see you. Expect to wait 8 months for an appointment with Dr. Grubb, you could try to get an appointment with his NP, Bev, that may get you in sooner, but I assume you still need a call made on your behalf.

This warning is also for Peter Pan brand peanut butter.....same number on the lids as above.

I'm very sorry for your situation. In addition to the other great suggestions I wanted to suggest you look into Hospice Care, if your local hospice has the funding, in addition to end of life care, they may deal with chronic illness support. I believe it depends on the resources they have available, but I wanted to suggest them if the other suggestions don't help. Many people are not aware of the other services Hospice can offer. I hope you find the support you need to get through this. Also if you have local friends, you may not want to ask for help for fear of being a burden, but many times people are looking for ways to help, they just don't want to overstep boundries or push themselves upon us, and if you ask, they may be delighted.

Yes it is amazing what Pain Management, Physical Therapy, exercise, medication, the power of positive thinking, and good counseling to deal with anger issues, can do for bodies like ours--IF you actually DO the things doctors advise you to do, long term. Myself and my daughters Joint Hypermobility would not be under control if not for exercise, and out of 13 PT's between us through the years and injuries, we've only met one PT who was not aware of EDS. And my daughter has a Pain Management Specialist who manages her severe pain, and keeps her functioning quite well even working to find two medications that work through her severe medication intolerances to allow her to be pain free, even while exercising. Also I think it's important for EVERYONE to remember this is a public forum available to anyone for reading. Whatever you post here is available on searches such as google by user name or topic. While it is sad that people who don't have dysautonomia choose to join, and trolls exist, anyone can read ANYTHING you write here. This INCLUDES doctors, nurses, people who work for social security, and family members. Good Luck in finding the help you need, and following through with that help. "Can't lives on won't street."

As a POTS patient without anxiety I can say I don't ever fear leaving home or get super nervous during an episode. I don't take any meds for POTS and myself and my daughter are fainters but staying home doesn't get us anywhere in life healthwise. I can pass out at home (and do) just as simply as I can pass out at the grocery store or the gym (done those too). I think--What's the WORST that can happen if I do this or that? I pass out and may wake up with a group of strangers around me who usually want to help. And usually I'm out with friends or family who know about my health and understand if I suddenly sit on the ground, or must always have water, or need to eat immediately, or if I do pass out. In my personal opinion passing out, (or having tachycardia, facial flushing, sweating) isn't the worst thing to happen in one's life. There is a huge difference in NEEDING to stay home, and being afraid to leave. I have plenty of times where my bp is too low, or I'm too dizzy, or have a migraine that it's just stupid to go out. But when you're a mom, you're generally the person who needs to get stuff done, visit the library, do the grocery shopping, get the dry cleaning, etc. etc. Not that I don't have help if I ask, but I truly don't mind doing these things. If I'm invited somewhere I haven't been I try it out. Again, the worst that can happen is I pass out. Some bad things like being somewhere too loud, or too hot, or too crowded, or too long of wait can also happen, but I try to enjoy my time, and don't go back if it's too much. Or sit outside and wait if I can't tolerate it. I don't want to minimize my symptoms, passing out and feeling POTSy doesn't feel good, it really, really stinks. But I'm going to do it at home, as quickly as I do it in public, so I don't feel the need to miss out on life. I get myself prepared to leave by eating right, and drinking plenty. I always leave with water and salty snacks. And I'm realistic about what I can do. I don't go out one day a week and attempt all our family errands. I go out when I can for smaller trips, and if I'm going to be gone for the day or week. I eat accordingly when I'm out and don't try and mess with things I know I can't tolerate so I don't jeopardize my time away. One of the reasons our family loves taking vacations so much is the "Stranger Effect" we can pretty much make fools of ourselves by passing out in different locations, my daughter has the ability to throw up almost anywhere, and chances are we're NEVER going to see those people again. Maybe we can even educate some strangers on dysautonomia. I certainly prefer risking embarrassment over turning my family into hermits anyday. I have a close friend with social anxiety disorder that came out of nowhere, and she says Paxil gives her the ability to not worry about other people around her. Or small problems in her own life that used to be blown up in her mind, and has stopped all her panic attacks. I know her husband appreciates having his care-free wife back too because he says she wasn't good at "hiding" it at all. I hope you're able to find the right counseling, therapy, medication, for any of you dealing with this.

Thank you, Thank you, Thank you Steph! I appreciate you made the trip, AND spoke your mind! My daughter would LOVE to do exactly what you are doing when she gets older. I was wondering about your comments about all the rare disorders in the room, and IF there is anything they are doing/planning that brings "us" ALL together? Though I certainly wouldn't fault any group for wanting funding for their OWN research, I agree completely with what you said about the large number of people, and how LOUD they could be together, instead of apart. Thanks again, it means a lot to us!

My daughter and myself (both POTS) take Yasmin with NO side effects what-so-ever like lisa. We read about it from past posts here, and our respective doctors both suggested it due to low hormone amounts, and for my daughter, the anti-acne side effects. My family believes low hormones are definitely better with regards to POTS, and our docs, including Dr. G aren't worried about our use of Yasmin at all. Hope you find something that works.

I don't mean to offend you gillian but you are indeed asking for medical advice and I personally believe that is a very dangerous thing to do. Doctors prescribe meds based on a firsthand knowlege of their patient, usually their height, weight, and sometimes BMI are involved, your dose has been tailored to fit YOU, not a bunch of strangers who have their own body types and reasons for being prescribed meds. I'm sorry if I feel that you probably had time to call your doctor and chose instead to ask medical advice about a PRESCRIPTION medication on the internet. I would also be very wary of messing with any medication, doctor advised or not, while leaving for a 4 hour car ride knowing how sensitive most of our bodies are to medication. I probably would've at least tried the extra dose some other day, IF I had my doctor's permission, to see how I'd react. If your doctor is only giving you "by-the-book" responses than perhaps it's time to find a POTS specialist, an online public forum is NO SUBSTITUTE for proper medical advice. Hope your trip goes well and you get in touch with your dr. or on call dr. if you feel the need to add more medication.

What a stunningly beautiful home!! Your husband is clearly quite talented! The environment thanks you too! Love the pics! We look forward to seeing pics of your daughter's first slumber party and puppet shows (in a couple years)! Beware---children think it's perfectly safe to throw pillows and blankets on the ground and propel themselves off the top bunk, keep an eye on the mini Evil Knievels, haha! We wish you many decades of happiness in your new home and town! Thanks for sharing!

We see a POTS specialist, and he advises our local docs. He's covered but we incur all costs associated with travel, lodging, etc. We'd see him even if we weren't covered as we believe no price is too much for good health/medical care.

Hi, my daughter and I (both POTS) have never been told not to fly. We've been on dozens of flights, the longest ones being 8 hours, so 12 could possibly be harder, but we've never had any issues other than fatigue about the 2nd or 3rd day AFTER the flight. And more fatigue upon returning home, not debilitating, just worse than usual. My daughter gets tubes placed in her ears as she gets negative pressure in her eardrums while flying and she does wonderfully. (Used to cry almost the entire flight as a child, so the tubes are a true Godsend!) I don't know about all airlines, but I know some do not allow oxygen as it can/could explode during pressure changes, others only allow oxygen provided by them. As of last year they did pass a law that certain airlines would accept a couple specific containers that passengers could bring, however with the recent security changes I have no idea what the rules are. Obviously medical proof is necessary. Is it possible that you could "test" your ability to fly by taking a shorter trip somewhere? Hope you are able to figure out what's best, and get there safely. We too, travel for better medical care, and it's always been worth it. Vacations are also a great break from POTS too. We'd never give up flying as it's actually much easier on us than sitting in cramped vehicles.

Dizzy Dame this morning 21 people were arresting in the UK on accusations of preparing for a terrorist event. Security in the UK is at its highest level, it is very high here in the US as well. There is currently a no liquid rule in effect as some surmise the plot must've been utilizing liquids (e.g. liquid explosives) in some form to blow up as many as 8 planes in route from Heathrow to the US. There is no set time yet for changing the security status as I'm sure they don't know if they've arrested all those involved, nor did they have an exact time for when the attacks would take place.

I would call the airports you will be in and ask them if there's a medical excuse for taking liquids with you. I have a feeling it will be pretty hard since they are announcing NO liquids at all on planes but perhaps you can load up before you leave and in the airport (if that is even permitted) and you will be ok for the flight. I would also put a call into your doc requesting he drafts up a letter stating you need to travel with water to see if that makes a difference at the airport. Or if you feel better getting IV therapy, ask for IV fluids today and explain that since they aren't allowing fluids you would feel more comfortable getting "filled up" for the flight? I also agree with the use of a wheelchair especially since I bet security lines take longer to get through as searches are more intense. Good Luck

I want to clarify that I am almost positive a referral is NOW necessary to see Dr. Grubb. NOT an insurance referall (which many do also need) but some evidence from your doctor that you do indeed have suspected dysautonomia or a diagnosis that is worth his time to see you. This has been in place since he got back to work last year and had to reschedule some 500 patients in addition to his regular patients, and new ones trying to get in. With regards to hope and honesty, I personally would rather a doctor be honest with myself and my family instead of filling us with false hope, to my knowledge no one with a confirmed POTS diagnosis is told that treatments will be a definite cure, unless they wanted to be sued. To be frank I don't believe people should set goals of "getting better" or "getting their life back." I always wonder what that means because I believe the life we are living is what hand we've been dealt, so what is there to go BACK to? We ARE living OUR LIFE right now. I guess I've just learned to accept my life is lived with illness, and should one day out of the blue I get "better" than I'm blessed, until then I'm sick and I should probably learn to live within the limits my body needs. I just don't believe "hope" is an area a dysautonomia doctor should dwell on. Dr. Grubb will most likely talk to you about finding a "new normal" and let you know that your old normal will probably never exist again unless your reason for POTS has a cure. So if you don't like hearing that from your currect doc, Dr. Grubb will probably be no different, as he's very realistic. I digress, I also wonder why a doctor would not suggest physical therapy, as far as I've read ONE person on this site with seemingly undiagnosed issues has not been able to complete therapy. How could exercise done with the RIGHT therapist who knows about dysautonomia, at the RIGHT PACE not be a place to attempt improving yourself? I'm curious as to why he believes "you are not ready for PT" when the whole goal of PT or OT for the chronically ill is learning to do basic activities, with a chance of improvement, and to build muscle mass instead of stagnating and deteriorating your body? I guess we've just never looked at the medical community for cures, we definiely use the guidance of Dr. Grubb but he's a large proponent of the POTS basics and helping yourself when even the meds don't work and not trying to be your former self. I'd imagine since he advocates for swimming and PT so much, he'd be baffled why your doctor said no to PT as well? Good luck to you.

Developed a low grade fever daily 2-3 years ago, had POTS longer than that, no Lyme. GP constantly checks for infection at visits due to fever, always finds slighty higher white blood cell count, no infection. Ice packs and cold washcloths are my main relief.

If there is a connection I would surmise it's due to dehydration issues. Skin needs water to hydrate itself just as our internal organs do. Perhaps you could evaluate if you are doing the POTS basics such as taking in extra fluids on a daily basis, and ask your doctors if you should be drinking even more water during your "flares."

------------------------------------------------------------------------------------------------------------------------ Sorry for what is happening to you, but I feel the need to play devil's advocate here. First, I don't believe that just because people share an illness, means they have to be friends with all who share the illness. Much as all blonde haired people aren't friends with ALL other blonde hair people. Yes, you share something in common, and perhaps people want to discuss illness alone with other people, and not evolve into a "friendship" per se. Others simply don't like others views as to how they handle their illness and choose to not befriend them. I know nothing of you, so naturally I'm speaking in generalizations here. Secondly, it is summertime, some people get busy and are able to enjoy vacations, and family, and decent weather. Others have a very hard time with heat, and barely function at all, even sending one sentence can seem like a chore. I wouldn't take it so personally. Lastly, I believe that not everyone falls under the adage "misery loves company", I know that it will be hard to read for some, espeicially those particularly resiliant to counseling/therapy for whatever reason. But the sad fact of the matter is that neither my daughter nor myself would have been able to sustain friendships if we complained about our health all the time, or made friendships one-sided because we felt people couldn't understand rare disorders, so we could write them off. Illness is a very large burden to lay on people (whom aren't professionals) and have probably not dealt with illness in their own lives, on a consistent basis. Yes, I especially encourage my daughter to speak out about POTS and how it affects her life, but I mostly encourage her to have fun, get out of the house, and "fake it until she makes it". She may not feel perfect, nor will she probably feel "great" ever again, but becoming a hermit wouldn't do her any favors. Not ONCE has she gone on vacation with us, or gone out with friends and not enjoyed herself after leaving home and relaxing, she is old and smart enough to know when she just can't be up and around. Same thing for myself. I wouldn't be able to sustain marriage if I became a bitter person. And without a doubt if she doesn't feel good and comes home, or I need to go home, we are fortunate enough to have friendships that rise above our health, and it's understood we can't always keep up with others, or do activities they may have planned. As supportive as websites may be, I 100% do not believe they are any substitute for face to face, one on one or group interaction with others, AND counseling/therapy from professionals. I'm sorry for those that disagree, but I feel the need to speak up for friendships who have sustained years and illness as they do exist. Furthermore I think some people need to look into themselves if many friendships/relationships aren't working and not play the blame game, or throw pity parties constantly. Again, not talking about ANY specific person in this post, just life experience.

I would beg to differ that balance and accepting don't work, as well as disagree that for "many" POTS meds are necessary when it seems there are a fairly equal number of people on this forum that are just as NON-functioning while on medication, as there are functioning taking meds. We must remember POTS is a syndrome--collection of symptoms--with no cure. I have NO problem with those that take meds, I had a problem with MYSELF taking medication only to cover up symptoms then adding more undesirable symptoms brought on by taking the meds. By ACCEPTING that if we must have tachycardia in order to raise our blood pressure my daughter and I live life with tachycardia, we also do the same acceptance/compensation with many POTS symptoms. By drinking extra fluids, taking in extra salt, not expecting to live a "former" life and do the activities we did at an early age, and that we MUST stick with an exercise/weight training regimen we have BALANCE. Just as I recognize there are people who cannot deal with symptoms and take meds, please do not see the answer as cut and dry, simply because others have chosen to go another route. Bear in mind that both my daughter and I TRIED many, many meds, and trust me if one had worked for me I would have gladly swallowed that pill, I was not fortunate, so I found another way to function which works just fine for me. And that doesn't mean our POTS is any more/less severe than anyone else on this forum, it just means we learned to live with chronic illness.

I do not take POTS meds not because I don't believe in being natural, but because I tried all of them, and the side effects I felt were stronger/worse than having POTS and accepting the way my body works and accommodating to that. Same for my daughter until she started Procrit last year. She is almost fully functioning, I would consider myself the same, and we attribute this to exercise, and intake of additional fluids/salt, accepting our lives are going to be lived with POTS and that requires changes that we constantly make in order to find balance.