juliegee

Oh dear- So soon after her last infection! Melissa, please know that you're in my thoughts and prayers. I'm so sorry you have to endure this again. What a blessing that this one was caught early. I pray that you'll soon be home with you're loved ones. Hugs & Prayers- Julie

I'm not sure if this falls under the auspices of "energy healing," but I thought I'd throw out a few therapies that my son (and now I) am using. Mack, my 14 y/o is treated by Dr. Peter Rowe at Johns Hopkins, a leader in the filed of dysautonomia for teens. Dr. Rowe highly recommends that Mack (and all of his patients) participate in weekly PT. He advocates a type of therapy called "Manual Therapy." The practioner simply places his hands on Mack in a variety of positions, while he lies still on a table. Mack often goes into PT feeling lightheaded and nauseous and always comes out feeling terrific. The practioner can "feel" what's going on with Mack's body simply by placing his hands on him and subsequently treats whatever is flaring Google "Integrative Manual Therapy" to learn more about this. After a year of IMT with good results, Dr. Rowe insisted that Mack go on to see an osteopath for cranial therapy. He recommended a specific D.O. in Atlanta (who was an hour away from us.) This fellow was trained by Robert Fulford, who was immortalized in Andrew Weil's book "Spontaneous Healing." At Mack's first visit, the doctor placed his hands above Mack's body to feel his energy. He felt good energy on his head and NONE on his body. He claimed everything was blocked below his neck. He placed his hands on Mack, like the PT, but then proceeded to go into a trance. (I thought he was sleeping.) His chin would actually touch his chest for long periods. Then he pops awake and says things like "Thar' she goes!" Once he "unwound" Mack. He basically twisted his upper torso around and around while Mack sat on the exam table. Unlike IMT, Mack often felt badly after treatments, but always rebounded to a higher level of recovery. Mack, due to his dysautonomia and motility issues was out of school almost ALL of 7th grade. His weight got down to 100lbs at 5'8" and he was so lightheaded, he often couldn't sit up. He's now back at school for 8th grade. He now weighs a whopping 145lbs and is over 6' tall. He hasn't missed a day of school and has earned straight A's on his report card. (Excuse the bragging!) I was VERY skeptical of these therapies, but because they were strongly recommended by Dr. Rowe, I conceded and am very glad I did. Mack has improved in leaps and bounds. Now that I'm suffering from GI motility issues, I've begun the Manual Therapy. I've only done two sessions, but think it's helping. It takes away the nausea (at least for the hour that I'm there.) Ill let you know how it goes after a longer period of being treated. I think it's good to be open to alternative therapies especially if they come recommended by credible experts. Julie Julie

I was going to suggest that you look into fibromyalgia or CFS, as both often overlap with POTS and cause significant pain. Another thing to look into is Ehlers-Danlos Syndrome (EDS) as that often overlaps with POTS, too. Hip and back problems are prevelant with that. A good orthopedic doc should be able to access you for hypermobility, etc. I've also had that pain on the bottom of my feet that is incapacitating. It tends to signal a dysautonomia flare for me. I've always been able to work through those stretches (that sometimes last a month or so) by trying to get extra sleep, eating carefully, hydrating alot. The pain eventually passes for me and I improve. I pray things get better for you soon. Hugs- Julie

Wow! Sounds like they were really intrigued and interested. And the one nurse with the tachy probably felt like her problems were small in comparison:-) I'm sorry that you felt like a "circus act." Especially since they pounced upon you without warning. At least you're problem is being acknowledged in a positive, affirming way. (Rather than being told- "It's all in your head.") I'm sure that each of your colleagues, who knows about yor condition admires you for your strength in being able to work despite such severe symptoms. I think you're a hero! Julie

Gayla- I'm sorry you were kicked to the curb before you were stable. I remember (in the old days), GB surgery was MAJOR. Patients were hospitalized for a week or so and recovery was really tough. Now, they don't even ensure you can drink/eat or urinate. Shame on them! Most imprtantly, how are you doing NOW? Are you able to eat OK? Is the pain subsiding every day? If you are taking narcotics, be sure to take a OTC stool softner or something to prevent constipation. I'm sending prayers your way. Post when you can! Julie

Hi All- I have a quick question. I've recently started taking .1mg of Florinef and Thermotabs/salt tablets. I think it's helping me feel better. (My GI motility is much improved, but I began taking eythromycin as a prokinetic, at about the same time.) My internist wants me to add Atenol. I'm hesitant as BB's have always made me so tired in the past. Does anyone take a BB with Florinef? If so, is it helpful? Thanks in advance- Julie

Hi All, I'd love to hear your experiences. I've never done a formal TTT, just the Poor Man's version at home and in the ER. Each time, I lose the pulse in my wrist after a moment or two of standing. The finger clip at the hospital simply stops registering. Is this common? My hands and feet turn really dark purple and get so cold at the end of 10mins. Does this happen to you, too? My HR goes up anywhere from 30-60BPM depending on whether or not it's a good/bad day. I'm up to .1 florief and it does seem to help stabilize my HR a bit. I'm just curious about the lack of pulse on my wrist and the purple extremities. Is this common with POTS? Thanks- Julie

Oops! I'll be thinking of you then and sending positive energy and good thoughts! Julie

OK Gayla- How'd it go? I hope you're comfortably home and enjoying a peaceful holiday- recuperating nicely...Let us know when you get a chance. Hugs- Julie

Gayla- I just had my gallbladder out on Nov. 8th and it turned out to be the beginning of a serious motility problem for me. The GB needed to go. It and my liver were covered in adhesions- signs of serious inflammation for years. the biopsy of the GB also showed severe chronic cholecystitis. I woke up from surgery, shaking and shaking. I needed many injections of dilantin to stop. I was in pretty intense pain from the CO- 2 that was pumped in me during surgery. It felt like the same pain the GB had been causing. Despite that, I was able to to home that same day. From that point on, however, my GI tract pretty much slowed to a point where it was not working. I became obstructed every 7-10 days despite tons of meds for constipation. I was always nauseous and could eat very little. I've lost 20lbs that I wasn't trying to lose. I've been in and out of the hospital since then. I've been Dxed with gastroparesis and am now using eyrthromycin as a prokinetic. It has been a godsend in that it has not only got my tummy moving, but also my bowels. I'm hungry for the first time in months and so grateful to have finally figured this out. I don't mean to scare you, but wanted to share a rare, but possible, outcome with you. The stress of the GB urgery seems to have shut down my whole GI tract. Those of us with POTS are prone to motility problems anyways. Time will tell whether this is a permanent or temporary change for me. Fluid loading is a great idea as are the inflatable stockings they put on your legs to pump blood back up to the heart. In recovery, I also remember having a hard time coordinating my burps and hiccups- common for those of us with autonomic issues (especially after they remove the breathing tube.) I'm just now getting back to normal. I pray your surgery goes much more smoothly. I'll be keeping you in my thoughts and prayers. Please keep us posted on your progress. Hugs- Julie

My son doesn't take BB's and his HR has been as low as 39 BPM. I've even taken him into the ER when it gets this low. He feels fine and they're not too worried about it. He's had a full work-up by a cardiologist. If your HR gets really low and you feel horrible, that's when you need medical attention. Julie

Oh Shayden- I really feel for you. I am so sorry you are getting the run around. As sick as you feel, the coordination of treatment NEEDS to improve. We have a similiar set up with Dr. Rowe from Johns Hopkins. We communicate via E-Mail. I drop off a copy of the E-mail at my son's ped and tell the receptionist I need a script for ...... Please call it in to........ Usually, that same day, I can pick up the drug. My son's ped does all of the follow-up and bloods, etc. Having it in writing via E-Mail makes all of the difference! The ped can read what symptoms precipitated the new script as well as all of Dr. Rowe's recommendations. Try to get Bev's E-Mail and your doc's E-mail and see if you can't try to coordinate this way. It may be a bit unorthodox, but your current state of health demands thinking "outside of the box." I'm sending tons of warm hugs your way. Julie

One idea for dealing with the increase in BP- especially if the florinef was helping your POTS symptoms- is to add a beta blocker. A BB will lower your HR and BP and hopefully not take away from any benefit the florinef was providing. Hugs- julie

Years ago, I had something similiar. It was so painful. I really feel for you. I always felt like I had to go, but then nothing happened when I tried to urinate. In retrospect, I think I had a condition called interstitial cystitis. Google it and check it out. I had recurrent horrible UTI's. Sometimes, I tested positive and others I didn't. A cystoscopy showed that my bladder was very red and inflamed. It lasted several painful years. Yes, I think it is related to the autonomic nervous system. I've met many with autonomic problems that also deal with this. Perhaps, we are not properly emptying our bladders due to a bit of neuropathy and subsequent chronic inflammation occurs? Any other theories? I hope you find relief. Hugs- julie

I take liquid eyrthromycin as a prokinetic for gastroparesis. It makes me hungry and takes away my nausea. Julie

Hi Lavendar- Sounds like what you are experiencing goes beyond Reynaud's. Have you ever heard of Reflex Sympathetic Dystrophy? Google it and check out the symptoms. The pain in hands and feet is a big part of it as are the Reynaud's-like symptoms. Do not freak out! It is not always progressive and can and does often spontaneously disappear. It is a problem with the autonomic nervous system- it basically goes haywire. I know several people who've had good luck with a special type of PT called Manual Therapy to help with this. Check it out and let me know what you think. Big Hugs- Julie

Hi There- I also have severe Reynauds. I think it is linked to POTS because I've noticed that so many here have it. Yep, I think the blood pooling and not circulating, in the hands and feet can definately cause this. We have plenty of blood to our extremities, it just isn't moving properly. When the blood sits there, it grows cold and the severe symptoms occur. All of those vasodialators also make my POTS worse. Maybe the best way of treating your Reynaud's is to treat your POTS. What are you taking for that? Hugs- Julie

It's so great hearing from everyone. Thank you all for the support!!! I am happy to pass along Dr. Rowe's articles to anyone who will PM me your E-mail address. Or if there is a spot on this forum to post a link, I'd be happy to make this information available to everyone. (Just tell me how.) Dr. Peter Rowe is a pediatrician at Johns Hopkins, who specializes in treating adolescents with POTS/NMH. He's on the forefront of putting together treatment programs. Even though the info is for teens, it seems to apply to us adults pretty well. I hope many of you find help via this article and/or it helps you communicate with your health care professionals. Hugs- Julie

Thanks, guys- you'll never know how much your support means! It is such a gift to find such a caring group of people, who are all going through the same thing. My appt. went great. My doctor was very open to learning about POTS. I shared with him the results of my Poor Man's TTT and that, along with all of the rest of my history that he was familiar with, was enough for him. He toyed with the idea of sending me to a specialist (travel involved) and doing formal testing. I had brought an excellent, comprehensive article from Dr. Peter Rowe at Hopkins- that describes the steps in treatment, etc. And, he finally decided to just start treating me! Yeah!!!! I'm a busy Mom & don't have time for travel, etc. I've started on Thermotabs and florinef and am feeling better all ready. He wants to add Atenol in a month after I've worked my way up to .1mg of florinef. I have to go in weekly now for BP checks and electrolyte monitoring. I was nervous about bringing POTS to my doc's attention, but it was such a positive experience. He was almost relieved to find an explanation for my extreme Reynauds, extremely low BP, severe constipation, etc. If anyone else is in the same position and wants to begin to broach this subject with your doctor. I will be happy to pass along Dr. Rowe's article. It's step-by-step approach, with an overview of the condition, really made the difference for me. Thanks again for your support! Hugs- Julie

Hi Guys, I'm finally going to do it- talk to my doctor (an internist) about POTS. My son's been DXed for a few years now and it's been getting clearer and clearer that he's not the only sufferer in this family. I've had symptoms my whole life, sometimes pretty severe, but I always thought I had it under control- somewhat... Well, things have been getting pretty bad. I've been having a really rough time with my digestion lately. I've just been sprung from the hospital following an obstruction, my 3rd in less than a month. I had no BP when I got to the ER because I was so dehydrated. I'm having a really rough time eating (losing lots of weight) and dealing with severe constipation. My son also had severe motility problems that improved once his autonomic dysfunction was addressed. So, I'm hoping the doc will take me seriously and start some sort of treatment besides fluid and salt. And, I pray my motility will improve as all of this does. I've downloaded all of the information Dr. Peter Rowe from Hopkins has passed along to me for Mack, my son. I will share that and the wonderful brochure from this site with my doc. Any other ideas? Docs HATE when you think you know what's wrong! Thanks- Julie

Oh Melissa! I'm so very sorry for all you are going through. You've been so sweet , helpful and inspirational to us all. YOU definately don't deserve this. Happy, Happy, Happy B-Day, sweetie! I am sending good thoughts, warm hugs, lots of love and prayers, prayers, prayers. Swim home soon! Julie

I've heard of the tall, thin POTS description, I guess that's me: 5' 9" at 128lbs. But clearly, POTS seems to come in all sizes. My 14 year old son's dyautonomia and motility problems started during a RAPID growth spurt. He went from 5' 7" (100lbs) to 6' 1" (145lbs) in a year! His docs have even theorized that with the incredibly fast growth spurt, his vagus nerve hasn't quite caught up. I, also, had a major growth spurt around 13-14 years old. I guess my vagus nerve still hasn't caught up! Julie

Sorry to wander off topic, but Becky got me going. The worst I've done (as opposed to have said) is thrown my complete outfit in the toilet after undressing at night. I thought it was the clothes hamper. Julie

purplish! Is that a word? Julie

I had that procedure done several years ago. No special complications due to POTS. Make sure she has Ambien or something to help her sleep, especially if she has splints in her nose for a few days. Having the surgery was fabulous as I can now breathe out of both of my nostils. The procedure also cured my lifelong problem with sinus infections. I'll keep Chrissy in my prayers. Julie