Patricia Gallup

I tried this medication for one month, the first 3 day patch didn't work, as it needs to get into your system, after it kicked in my OI became awful and I could barely function, always feeling too drugged. I ultimately stopped after getting rebound migraines. Then I went through the worst withdrawal I've ever felt stopping the patch because I had nothing to wean off since it is a time release patch and you can't cut it or anything. Good luck if you try it, but beware this is a very strong pain medication, and I may just be the type who doesn't like being out of control all the time, instead of taking a short acting medication that leaves my system in a matter of hours. I would be cautious of the strength of this medication, if your body becomes dependent, and if your form a tolerance, you won't find much stronger meds out there that would work for you. I believe fentanyl 25mg patch is 80 times stronger than morphine.

Why wouldn't your ENT put tubes in your ears to get rid of the fullness? Kids get these all the time, most good docs will do the procedure right in office with no anesthesia needed. It's a simple effective solution to long standing problems with ears and sinuses. Dr. Grubb knows these are associated with dysautonomia, he would probably suggest the tubes for you as well, he has for our daughter, she hasn't had an infection in her ears or sinuses in over a year. Either that or visit a headache neurologist and get some meds to clear up your head.

Are you/is he open to alternative treatment? I'm not sure it's available in Australia, and I've personally never smoked as I couldn't imagine smoking with dysautonomia. But what about accupuncture? Or some sort of hypnosis program? I also know nothing about hypnosis, but our POTS daughter has tried accupuncture for different reasons, and it's helped. Supposedly it can do wonders for smoking cessation in a safe way. Hope he finds something to get help. Glad he's trying to quit, and hope his health improves after he stops completely.

Sadly Sophia it would be very rare that any journalist would take on a case about the world famous Cleveland Clinic because of all those they do help. Even the Ombudsman, who claims to be there for patients, dismissed our friend's complaints about this program because naturally they are PAID by CCF, so what help would they REALLY give. Fortunately she never signed up, her first appointment was horror enough. This is just what chronic illness patients have to deal with. By all means I suggest Linda scream to the world what this program is really all about, but few will probably listen. Of course we will!

I'm a little curious how after learning this you could have stayed there for 3.5 weeks at $50 per day?! I have read about this program and believed it to be "fake" from the get go. A neuro suggested a family friend go through this program, but had heard very bad things from other physicians (not CCF obviously) to not need to travel so far for it. I hear Mayo and Univ. of Chicago have better programs that actually WORK. I too would contact CCF, Ombudsman or what not. I also hope you didn't pay the fee we heard they were asking! Only 10 POTS patients isn't exactly a stunning record either. Any other patients on this forum successfully been through this program?

Dr. Grubb is usually quite good at looking over records and tailoring treatment to patients. However the meds for POTS are virtually all the same, so don't expect he has anything new that no one else knows about. He may be able to weed out what doesn't work for YOU, and suggest something faster than other places. Our family believes that Dr. Grubb is fantastic, but is also most receptive to patients who are also willing to help themselves. Follow his exercise suggestions, seek counseling for chronic illness, learn to accept your life, and give the meds he prescribes enough time in your system to work or not work. If any patient isn't willing to put as much of their effort into feeling better, as the effort a doctor makes in suggesting treatments and improvements that could be made, it's probably not worth any doc's or patient's time and money to show up. Dr. Grubb is very involved in dynakids, and has a pretty good success rate at helping younger people improve their lives, I don't believe older people have the same results for many different reasons, but personally, our lives are certainly better because he's in them!

Why not take an incomplete, you won't lose the money, if your prof is understanding you will be able to finish on your schedule not hers? I'd have a one on one with your prof. You should find they are very understanding of people with illness, especially if you are registered with disability services. You deserve a degree same as anyone else, profs are humans too, and usually they are very accepting of whatever ideas you have to finish up the course. Try not to get yourself worked up and sick over this, there is virtually always a way out that understanding universities are willing to help you. You, however, need to make the initiative to not get further behind and deal with the situation immediately. Also when in college I would never have been able to sit in class 3 straight hours, let alone in summer. Perhaps you could stop going altogether, she could assign independent study of the same caliber as class work, and spend private time with you for testing, going over notes, etc. This has been done before so don't be afraid to lay it on the line and tell her just what you wrote here! Explain that you don't know how your body reacts and this semester it's not reacting well.

Patients usually go through multiple tilts because different facilites want their OWN records and results. Especially if they are teaching hospitals. It's pretty standard to get the same testing done wherever you go, depending upon the technology of the facility. Normally the way it's done just varies, some tilt for 10 min. some for 20, some add medication, some not even an IV is inserted, etc. If a different facility has a different approach to treatment, and wants to start from square one, my daughter doesn't enjoy them, but is willing to do so for a complete picture.

Hi, welcome, dynakids, dysautonomia youth network of america, inc. has a wonderful forum for parents of dysautonomiacs. I encourage you to join and add that to your resources like dinet. Here's the link: http://www.dynakids.org/index.jsp Your step-daughter can also join a separate private forum on dynakids to meet peers who go through the same struggles/achievements as herself. Good luck.

In order to bring this topic back ON topic, and hopefully not scare any Procrit takers into not believing their product is legit I think I can calm most everyone's fears. First, this story is a bit old news as far as Procrit is concerned, I'd imagine they didn't speak to much about Procrit and what to do because of this. This story was run at least one year ago, I believe more, and I'm pretty sure it hasn't happened since, and all the "bad" product was identified. If you don't trust your procrit you can always call Johnson & Johnson, parent company to BRAND NAME Procrit. They know the dosing affected, if I recall it was all above 20,000 unit dosages, mostly 40,000 unit single use boxes. I believe this is higher than any POTS patient would need to take? They know, or at least knew when we spoke to them all of the identification numbers, serial numbers, etc. on the affected product, and the customers were notified if believed to receive counterfeit product. Obviously it was removed from all pharmacies, including CVS which received the most shipments. Yes, it is quite nervewracking, but if you EVER suspect something is off with your medications you can do 2 things, take it to your pharmacist, where they can run labs, or send away to check validity; and 2, like we did, at advice of our pharmacist before wasting product, call the parent company directly and find the true story.

To be perfectly honest you seem plain deconditioned. All your symptoms match those experienced by muscle atrophy. I realize for a POTS patient aerobic activity is nearly impossible, but the beauty of exercise is there are hundreds of different levels, from babies, to seniors, to paralysis patients.......PT's go through a lot of training in order to treat everyone at THEIR level, not the level of the average person. Perhaps she would write you a script for cardiac rehab. This usually includes nutrition training which could probably help your cholesterol situation, counseling and stress management, biofeedback training should also be offered in order to get your whole body in it's best shape DESPITE POTS, and get your pain controlled. If Dr. Grubb is your doc I'm shocked he hasn't already ordered you PT, he's the biggest advocate for exercise my family has every met! Thank Goodness! If it weren't for sports and PT our daughter would barely be able to walk with her severe hypermobility syndrome. Hope you get the help you need. I can't help but think of the adage.......If you don't use it, you lose it. When it comes to exercise, your muscles, your strength, endurance, energy levels, and overall health. There are many specialists who can get your body back on track, hope you find one--or however many it takes!

If you haven't worn them, why can't you return them to the store? Or even the company? People have ways to tell if shoes have been worn outside, so if there are no tread marks, I don't see why they aren't returnable in this situation? Perhaps a plea to customer service is in order, sure is a lot of money to waste, the company has to understand that, no? Also, FYI for anyone interested, a very CHEAP, economical way to get the same basic effect of these shoes is one of 2 things. Buy a gymnast mat, the thicker (at least 2 inches, preferably thicker) kind, so that your feet sink into it when you walk, or buy a 2x4x10 and walk back and forth on that. Both of these force you to utilize muscles not needed on stable ground. Walking on the 2x4 in a straight line is no easy feat, neither is walking on an unstable mat, which feels like sand. Both of these cost less than $15 and can really be done by anyone. If they need assistance hold onto someone, or place mat or board near a wall, wear shoes, as you improve don't use help, go barefoot, go forwards and backwards, toe to toe instead of larger steps, etc. There are many ways to use these cheap tools to get the same results as spending a few hundred $$$ on shoes, not to mention orthostatic reconditioning by being upright for short periods of time.

This may just be a side effect, HOWEVER, if there is a history of stroke with your, or your family, you NEED to have your counts checked, and see if they aren't going too high, too fast. My daughter had migraines/headaches with one shot per week, they cut her dose, and she self administers twice per week, and her dosage is adjusted as need be. There is a history of stroke in my husband's family and she must be monitored often to ensure her counts stay in the "high normal" range, or she will be taken off. It is well worth the constant monitoring and adjusting for her to have this drug. I would definitely speak to your doctor before taking another full dose shot. I hope they don't give up because of this, they should find ways to work around it, as they did for my daughter. Hope your headaches improve, but please be careful with them. Not trying to alarm, as the danger is probably not "truly" emergent, however too many red blood cells are not good over time. My daughter's doctor does NOT want her to have headaches, or to be notified immediately if she does, and with the "right" dose, she never does. This is NOT a symptom that you should deal with or get used to for this particular medication, this symptom usually signifies too much procrit=danger. Since it's happening so early, I would highly suggest a dose change, at the very least a check of your blood counts. You DON'T need to feel this way Ernie, they should be helping you, low and slow dosing is how my daughter's life was changed!

Something pops out at me here......Were you wearing your duragesic patch during the testing? Could that explain your symptoms? Fentanyl is a pretty heavy duty drug, and I was surprised you "felt" the affects after one day, with one patch, as I believe it's common knowledge the first patch doesn't work, even for POTSie people, because it needs to make it's way to the bloodstream from the outside of your skin. After 2 days though, I suppose a sensitive person could have symptoms as you described WITHOUT any testing since it's such a sedating medication. Hope you didn't wear it during your testing, as I know drugs skew results, especially something as strong as that patch.

Can I ask how this topic got so terribly OFF topic??? I don't understand why there is now a debate over who does and doesn't have a college degree--if I wanted to, I could also find WEBSITES with people who DO have higher education degrees and certainly add my name to the list--but I don't believe that has ANYTHING to do with dysautonomia, and subsequently doesn't have anything to do with Dr. Phil. I was interested in this and what people were going to do, as I often contact everyone I can to inform them of my daughter's condition. I now fear that because a few have chosen to go on a tangent---for a reason I cannot follow from the postings---that no one is going to get back ON TOPIC. It would be great if the off topic issues about college would be REMOVED--in my opinion--so we can get back to the ORIGINAL TOPIC. Thanks

I had figured I would elicit some emotional responses, however, it was certainly not my intention to "offend" anyone.......being that who would I be to "throw stones from my glass house?" I just have these kind of discussions with my daughter, and at family counseling, and I believe she's at an age, where she's entilted, and educated enough to have her own opinion, so I thought I would post. We all do what we can do make it through life, what choice do we have? We LIVE, we deal with the hand of cards we've been dealt, it is simply her opinion that if she'd had the choice, she would have sat this hand out. It's heartbreaking to hear that yes, but she is her own person. She now feels the need to speak up for those who don't yet have a voice. I appreciate all your responses, and all the information this site has provided simply by being here. Ernie, and FunnyFrog, I think as my daughter ages she will definitely relate to your decisions, and she's already taken kindly to pets. (not to make light of either of your situations by any means) Sally, I appreciate your post, and probably related most to it, thank you for taking the time. Everyone else, again, I was not trying to offend, just trying to give my daughter a voice, and provide thoughts on something I wish I had known years ago.

Hello - It's new that I am posting to this website, but I have been reading the posts for quite some time now, and I have seen the postings about children more times than I can stand without making a comment. Prior to your replies to me - I want to give you my background. I am the mother of a teenager who has had POTS for 4 years. I haven't been formally diagnosed with any particular illness, but I have symptoms of dysautonomia. My daugher says she hates me because I knew my symptoms before her birth - and the last 4 years have been nothing but Dr visits, endless testing, and an almost completely bedridden life for my teen. My husband and extended family are willing to do anything to get her the proper care and treatment she needs. I do everything to try to give her as fulfilling life as she can live, but there is still an underlying anger there.....she wishes she were never born......and despite counseling for years, she continues to feel very hateful towards me because I had control over whether I decided to have a child or not. Please take the time to read and consider my statement prior to making comments due to emotion. I am concerned about the attitude towards having children on this site. It worries me because I am not confident that the best interest of a child is taken into consideration. There's so much responsibility involved in raising a healthy baby by a healthy parent. The postings on this site encourage the right to have babies by individuals who are not healthy - and have genetic issues that have incredibly increased chances of being transferred to the children. Why are you ok with these increased chances of passing on illness - just so you can feel more fulfilled in life?? Everyone on here realizes the uncomfortable nature of going to the Dr constantly, the number of Dr's that you have had to go through to be properly diagnosed - are you really happy having a child who may have to go through the same illnesses? Also, are you prepared to face the fact that your life may be shortened unexpectedly due to the illnesses and your children will grow older without a parent? Have you considered adoption or fostering healthier children? I just think it would be great to give an otherwise "unwanted" (for lack of a better word) child a better chance at having their own life fulfilled. Please just take this into consideration - I am not trying to make people upset - I just think there are a lot of people in the world who have children because it's convenient for them - and they don't take the future feelings of the kids (healthy or not) into consideration. It's great to go to an OB/GYN for high-risk pregnancy but do you think about the child's health and well-being for a long time afterwards? If nothing else - please take the time to visit a geneticist to see about the chances of passing on POTS. If I would have read or received information like this 18 years ago - I would have put my unborn child before my own feelings towards wanting to fulfill my own life. Again - please reply using logic rather than pure emotion. Thank you.