juliegee

Rachel, I'm so glad to see you're making progress towards a DX. How frustrating to have symptoms as severe as yours without even a name to place on things. You're denied even that tiny bit of validation. (So many here can identify!) Dr. Cohen sounds wonderful. I feel confident that he'll come up with with something to treat you, possibly halt the progression of things, or at the very least- give you more information. Your case may also shed light on others similiarly affected. Congratulations on getting a step closer to a possible answer. Keep us posted on what you learn and please know how grateful we are for your service on this site despite all you are dealing with. Hugs- Julie

Every once in a while this happens to me, too. I just feel pulled to one side- almost like I'm drunk, but I'm not! I sometimes look in the mirror and check for signs of a stroke. Everything works on both sides, just not very well together :-) Thank goodness this doesn't happen too often. I wonder what the medical explanation for this is.... Julie

Thanks Morgan & Pat. Yep. I take 300mg of ranitidine (zantac) daily. This isn't a reflux thing, but H2 blockers also help with the mast cell issues (believe it or not.) I also take zyrtec, singulair, benadryl and phenergan- all antihistamines. They usually control the hives/anaphylaxis....but not lately. My throat just tightens up (like I'm being choked.) My voice even gets hoarse. And, my burps get stuck in my tum. Very disconcerting- to say the least. I'd love to hearfrom anyone who has the same problem. Julie

Ditto to MomtoGiuliana and Morgan!!! Absolutely, yes as long as you are open to the possibility. Julie

Hi All, Like so many here, I'm still struggling to get a definitive DX. Lately, I've been having trouble with throat tightness...to the point where I am unable to burp. My throat is so swolen, I struggle to actually get my burps out. When I do, it feels better. Coordinating burps and breathing gets hard when this happens. And, of course, this only happens when my autonomic Sx's are whacky. I just wondered if there were any "Me Too's" re. the stuck burps and throat tightness. I'm trying to figure out what part of this is autonomic and what part is mast cell related. The two are inextricably wound together so this is tough to figure out. I do get anaphylaxis and suspect that this is what's happening here. I sometimes go weeks at a time with a sort of low grade anaphylaxis symptoms. When it's really bad, the throat tighness is followed by chest tightness, tachycardia, lightheadedness, High BP, follwed by low BP, (& when it's awful) a buzzing in my ears before I lose consciousness. My epi-pen stops things for a while and benadryl helps. And, my BP (even when I'm not having Sx's) is always crazy low- 90/60 and 70/40 when supine.) I take lots of antihistamines daily and go months/years without bad Sx's. They're back %$#@!!! My allergist has me seeing a mastocytosis doc at the Georgia Medical College later this month. I'll let you know how it goes. Julie

I went without coffee for years. Even a sip sent my heart into major overdrive (200bpm) and I would almost lose consciousness. Believe me, if you really can't tolerate it- your body will let your know. Even a tiny sip of diet Coke would do the same thing. It was difficult going off caffeine (and I only drank a cup a day.) I had body aches, headache, etc. Just this year, I began to experiment with a sip here and there. Lo and behold, I'm tolerating it. I LOVE the extra boost of energy it gives me. I can safely drink a cup in the AM. I haven't scientifically checked my pulse, but I'm definately not having the severe tachycardia any more. Julie

Hi Sara- I just wanted to let you know that Dr. Rowe (pediatric autonomic specialist) uses a stimulant class of drugs to treat POTS and NMH/NCS. I believe sudafed and adderall were the two he uses. So this doc isn't totally out there. If it's working for you- Yeah!!! Like Maxine, I have read quite a bit that connects POTS and EDS...something like not only the joints are lax, but the blood vessels as well? I'm sure you can find good info on the web to bring to your next apt. I know a virus can bring on autonomic dysfunctions, but there are also many other causes. Maybe print them from this site. Isn't it funny when you have to educate the expert:-) Julie

So glad things are improving for you! I also had great success with florinef, but stopped using it do to a few unwanted side effects (hirsutism not among them.) However, I have struggled off and on with unwanted hair on my chinny, chin, chin:-) For some reason when I was pregnant, I started growing stiff hairs on my chin. (I'm blonde, so they weren't dark- but I could feel them- Yuck!) I had great luck with electrolysis. But, of course, you have to go back for repeated treatments. A hassle! Lately, I've found a new solution I am really excited about. I still occasionally get a few unwanted hairs. I pluck them and rub a small amount of a prescription cream called Vaniqua. It really works. I hardly ever have a problem now. I've taken to rubbing it under my eyebrows too to avoid having to pluck them. You may want to look into Vaniqua. It doesn't remove hair, but will keep it from regrowing after you do remove it with any manner that works for you. Too bad they don't make it for legs! Julie

Hi There- I'm a parent of a teen with an autonomic dysfunction and chronic fatigue syndrome. I've stumbled across an excellent website that offers actual examples of 504 plans, etc. It is the Pediactric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance. The site address is: www.pediatricnetwork.org They have a whole section devoted to school issues. Best of luck Julie

Oh sweet Melissa, I've been avoiding this thread as I didn't want any more bad news..... because I love you so much. And now I've got tears running down my face. Your honesty and courage serve as an example to me and all of us. Heed dear Tearose's words. God has his time-not necessarily the same as your doctor's- and miracles happen everyday. Your spunk, spirit and determination have been an awesome force of nature to behold. I feel so lucky to have gotten to know you. You have spent so much precious energy reaching out to so many, not just on this site. You've done His work and shined His light to so many. I will pray that God holds and keep you in the palm of his hand until he's ready to bring you home. And, that he'll keep your parents, and all of us who love you, in his other hand. Julie

Hmmmmmm. Very interesting thread. I realize it's old...but new to me. I'm going to add a new twist. I have the same "attacks" and have wondered if they are anaphylaxis. I am being treated for Mast Cell Activation Disorder, MCAD, (based on clinical symptoms) and am in the midst of seeking a more definitive DX with a masto researcher. I have used an epi-pen several times during these episodes and ALL symptoms have stopped. At least temporarily. Sometimes they resume...I assume I need an epi-drip at that point. My attacks start a bit differently each time, sometimes a tightness in the throat, then pain when breathing in, followed bylightheadedness, tachy, high BP for me, like 130/100 (I'm usually 90/60). I feel lightheaded, start shaking uncontrollably and have a horrible attack of "D." During the last episode, I noticed my hands and feet turn deep purple. I work very hard at staying calm, but feel as though something dire is about to happen. I take benadryl, zyrtec, sometimes prednisone, and an epi-pen, right before I lose consciousness. The epi always stops ALL of my symptoms. If this were just tachy or a panic attack, the epi would worsen things, right? I noticed so many of you with similiar symptoms, also followed by fumes, etc. Any strong cleaning chemical, especially oil-based, can set me off. Am I on to something or are we describing different things? BTW, my allergist, formerly of Mayo, says that skin rashes (although I do flush & feel hot like many of you) are not necessarily a compnent of anaphylaxis and a high BP (rather than a drop) sometimes occurs. He believes I am experiencing anaphylaxis. Has anyone else ever considered this? Julie

Oh Dear, Miss Willows- I had something similiar in one finger a few years ago. Throughout the course of the day, I slowly lost feeling in it, the middle finger, from the middle knuckle up. It was annoying. I kept on shaking it to wake it up. When I finally looked down for a visual examination, I got the surprise of my life- it was deep purple, almost black. I went to a non-emergency clinic & was promptly sent to the ER. I ended up in the hospital for almost a week. The ER doc was convinced that my heart had thrown a blood clot. I was put on IV coumadin & they ran many tests. As usual, everything was fine. No explanation...just another weird phenomenon. The vascular sureon had me take plavix for a month just to be sure. Like you, I have Reynauds. It almost felt as if it was a more severe spasm than usual & a nerve was pinched, causing me to lose feeling. Throughout that winter, everytime I got cold, that knuckle turned black and I sometimes lost feeling in it...Weird. I now take 81 mg of aspirin daily and it hasn't happened in a long time. I realize that your toes are pink, but keep on eye on them. They may progress to color changes- hopefully not. I pray that DoctorGuest is right and this is nothing serious. Please be sure to keep us posted. Julie

Oh Rachel, I hate to hear about the gastroparesis on top of everything else. It sounds like you've already taken some wise measures, with the low fat, low fiber approach. AND, most importantly, you are holding your own with your weight:-) You don't mention nausea which can be a huge problem. Phenergan in the evening (as it causes sleepiness) is good & zofran (if you can get your insurance to cover it) is wonderful for daytime queasiness. Make sure you keep things moving all thoughout the digestive track. Sometimes gastroparesis patients get backed up lower downstream and that certainly exacerbates symptoms. Miralax is a miracle for many sufferers. Stay on top of refux, if you suffer from that, as the damage to your esophagus can become pre-cancerous overtime. Zantac, Prilosec, or Nexium are all good alternatives. If you ever reach the point where you think you need a GI prokinetic to help things move along in your tum, stay away from reglan. This is a bad drug, with many negative side effects. It crosses the blood/brain barrier and some side effects persist beyond the period of time the drug is taken. A tiny pediatric dosage of liquid erythromycin (the pink sweet stuff) 1/2 tsp or less prior to meals and before bed if you wake up with nausea can be a godsend. The erythromycin is benign & turns that nausea into actual hunger. My son has taken it for years and it hasn't lost it's effect for him. I've taken it intermitently and it works wonders. If the erythromycin doesn't work for some reason, many in the US turn to a drug that is sold OTC all over the world, called domperidone. It was created to increase milk production for lactating mothers & has a side effects of getting the gut to move. Some report weight gain and lactation with domperidone, but it also works well to counteract gastroparesis. Domperidone is considered to be quite safe, but is not FDA approved because it isn't financially feasible to work to get FDA approval- very political. Many gastroparesis sufferes order it from overseas. Small frequent meals are another helpful factor- as is getting plenty of exercise...which may be difficult for you as I recall. Do your best to move around as much as you can. That gets the tum working like nothing else. Connecting with a GI now may be a good idea as it is so hard to hook up with one when you are in dire need. Wait times here in NE GA are lengthy. Consider it a baseline visit. You might feel better if you have a good GI in place should things progress- God forbid! Or, check with your PCP and see if she thinks that is necessary. I'm keeping you in my thoughts and sending good healing energy your way! Julie

Yes, Dr. Rowe gave me the abstract for a study, I think it was Australian. I'm off to a volunteer gig now, but will scout it out later and post the info. Julie

Hi There! I think you're talking about Amitiza. It's really not that new, just being marketed more aggressively since Zelnorm has been pulled. Unfortunately, Amitiza doesn't work for me. Zelnorm does, but only if I use it infrequently, like once every two weeks or so. Miralax, thank goodness, works wonders. It makes me feel normal:-) Julie

Hi Maxine, You may have already resolved this by now, but thought I'd throw my two cents in. I took florinef for few months during a really rough time. Like you, my BP can be really low and that leads to alot of fatigue. I took .5mg to 1mg when I was really doing poorly, having trouble eating, etc. It increased my appetite (which was a good thing for me), energy, and stability. My BP started to go a bit high 130/85...it's usually 90/60. I decided to discontinue at that point. I should have thought about cutting back, like 1/4 pill daily. I have even heard of other DINET members who do 1/4 pill every other day. Don't discount florinef entirely as long as all of your physicians agree that it's safe to try. Nothing helps me as much as florinef during really rough periods, combined with a high salt diet. Maybe this is something you can try on a short term basis to get you to a better place. Darren, that headache is a classic sign that your dose is too high. You could have cut back your dose if you were getting beneficial side effects from it:-) Julie

((((((((((Angela)))))))))) Feel better! Julie

Hi There- Ditto to everything that Melissa said. Yep, it's covered by insurance and yep it's recommended (by Dr. Rowe via some Australian studies) for dysautonomia. As far as feeling better....Mack (and I) always felt better after IMT. There are certain ways the PT puts his hands on your body to literally STOP a headache or nausea. We were taught how to do this for ourselves. When my symptoms were very severe, like nausea for instance, I could stop it with IMT; but it returned as soon as I stopped. Despite this, I think we both showed gradual improvements in all dysautonomia symptoms that we were able to maintain over time. We also had homework where we had to do our own IMT for 15 mins. daily. For both of us, we were also given gentle yoga stretches to do inconjunction with the IMT. Mack is very inflexible/tight. The PT also worked with him measuring how far his flexibility increased after treatments- a lot. After a year of IMT, Dr. Rowe was not satisfied with Mack's improvement. That's when he insisted that Mack begin doing the cranial therapy with an osteopath trained by Dr. Robert Fulford. Dr. Rowe actually recommended a specific practitioner. That guy was soooo strange. He actually went into trances while he was treating my son. Like Nina, Mack often felt much worse after his treatments. One time he actually got violently ill with vomiting and "D" on the way home. But, we were warned that Mack might have some temporary adverse reactions to treatments. He did! But, after recovering a few days later, he got to a stronger healthier level with each treatment. I think he only saw the osteopath 6-7 times. That treatment seemed to be much more effective in the long run than the IMT or manual therapy. (Although the IMT made him (and me) feel better in the short term.) Maybe it was the combination that was most effective. Dr. Andrew Weil's book "Spontaneous Healing" has a chapter devoted to Dr. Robert Fulford and his therapy. You will find a better explanation there. Maybe you can google him to learn more. My son was desperately ill and we were willing to do ANYTHING to get him better. It's been approximately a year since he stopped the PT and Mack has pretty consistently maintained his improvement. Because Dr. Rowe was so insistent, I overlooked my natural skepticism and gave the alternative PT's a try. They helped us. Julie

Your heart must be bursting! I am praying for his safe return as expected. My little bro just came back a few months ago. When I finally got to see him I couldn't let go. he had to pry me off of him:-) I know you understand. God is good. Enjoy your baby. Julie

Hi All- Like many of you, I have a GI neuropathy caused by my dysautonomia. I use about 3 doses of Miralax daily to get things moving. Until very recently, my insurance company, UHC, covered this and I had several cases, full of those huge bottles (527 grams,) sent to my home every 3 months. I just received a letter from UHC stating that they will no longer be covering Miralax as it is now available OTC. Yep, but sooooo expensive for those of us who rely on mutiple daily doses. The best price I could find at a retail pharmacy was $35 for a 527 gram bottle. But, I did find an awesome deal at Sam's Club and I wanted to share it with those of you facing the same problem. I found TWO 510 gram bottles (plastic wrapped together) for $26.50. This is a fraction of the normal price. I loaded my cart with all that was available and promptly ran into every one I knew:-) The embarassment of being a baragin shopper! The pharmacist at Sam's mentioned that this might be a Christmas special and may not be always available at this low price. I wanted to mention it to my DINET friends so that you too could stock up. Hugs- Julie

((((((((((Maxine)))))))))) You're in my prayers! Julie

Hi There- I copied and pasted this from an earlier post (with a few updates) as I thought it might be helpful. So far, the replies you received have focused on "traditional" PT. I think, depending on your level of functioning, that that can be very helpful as good cardiac conditioning alwys improves my symptoms. The following, however, focuses on an alternative PT that both my son and I have found helpful. It's sort of "out there," but Mack's pediatrician from Hopkins was adamant that he partake. Mack, my 15 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 full-time. He now weighs a whopping 160lbs and is over 6' 1" 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. I've also done the Manual Therapy to help with GI motility issues caused by my dysautonomia. Prior to the therapy, I had to use eyrthromycin as a GI prokinetic to help me eat. Now, I just use Miralax and phenergan as needed. The nausea is much improved after 6 months of IMT. I think it's good to be open to alternative physical therapies especially if they come recommended by credible experts. Julie

Hey Emily- Sorry. Durned if I know. I love the sentiment though & strongly agree with it. If I come across the author, I'll let you know. Julie

Deucykub- I'm really sorry for all of the discrimination that you are experiencing. In cases like this, you just have to believe in Kharma- for your supervisor, the company doc, etc. It may take a while, but folks usually get what they deserve. Hang in there. When God closes a door, he always leaves a window open. You just haven't found it yet. This could be the begining of a wonderful new opportunity. Hugs- Julie

When my son was very, very ill- unable to eat due to dysautonomia (we didn't know that then!) He had to wait 3-4 months to see a pediatric motility specialist at Johns Hopkins- a very rare specialty. Then after his consultation, he had to wait another 3-4 months for his testing (tilt table, antoduodenal manometry, etc.) We got results a month later. He missed almost a whole year of school (7th grade) trying to get a DX and treatment plan. We are very grateful that we found help, but it is shameful that he suffered for sooooo long, unable to eat, fainting every day. Long wait times to see a specialist are very common here. Things are certainly NOT rosy for us here in the US even with good health insurance. And, God bless anyone without. Regarding the length of appointments in the U.S.- with the exception of Dr. Peter Rowe, I've never had one longer than 10/15 minutes. I know that Sicko was biased and flawed, but I found it very moving. I, personally, don't want to live in a country where ANYONE is without health care. You've heard the quote about how we, as a society, should be judged by how we care for the most vulnerable among us. I couldn't agree more. I want everyone to have access to good, timely, affordable healthcare. Julie