juliegee

Nolie- Forgive me if I'm boring you with details....I'm hoping all of this info will lessen your anxiety:-) I forgot to mention that Dr. Darbari will meet with you one last time after the procedures are done. They call them a "3 for 1 special" (endo, colonoscopy and antroduodenal manometry) at JHH. I guess the TTT is just a bonus. He will let you know what he saw during the endo and colonoscopy, etc. And, he will call you (or meet with you in person as you're local) to give you the results of the manometry in a few weeks. Best of luck! Julie

Hi Nolie- I'll try to figure out how to empty my inbox- sorry. You and your daughter will LOVE Dr. Darbari. He is very understanding and a huge advocate of our kids. He will BELIEVE your daughter and he will believe in her. He was such a godsend after Mack's local specialists told us he had emotional problems causing him to vomit and faint all day. Grrrrrr. Dr. Darbari looked Mack in the eye and said "I believe you don't feel well. I believe you are sick. I am doing these tests to PROVE it and better help you." From the testing that Dr. Rowe did, it sounds like your daughter has NMH. She may also have POTS. Mack's HR got to 130, but not in the first 10 mins, so technically he wasn't DXed with POTS. I know that prep is nasty. Mack also had a hard time with it. He did it at a hotel near the hospital. I hope she's drinking the tiny bottle of stuff. Let her get it down at her pace. She doesn't have to chug it and she can mix it with tastier drinks. With her likely autonomic dysfunction, it will be particularly hard as she will be losing lots of fluid and it may exacerbate symptoms. It did for Mack. We had to stay in Baltimore an extra day or so after the testing, just to allow him to recover. The anesthesiologists at JHH are so good. (As you may already know.) They definately use a "less is more" approach with our kids. Mack was used to oral versed before the IV and the doctor there just let him have a whiff of goofy gas instead. He wanted to minimize the drugs in his system. I guess less anesthesia will help her have a better recovery and tolerate the probe better upon wakening. (No vomiting.) They actually let me stay with Mack until he was sound asleep. No worries about modesty. Dr. Darbari and the anesthesiologist will be the only ones in the room with her. Then, you/she will not see them again. Dr. Darbari will do the procedures and then basically disappear. Her regular GI or another fellow/resident will do all follow-up while you are there. In the recovery room, while she may be having trouble with additional BM's, it's just female nurses and you. I got Mack's bedpan and pulled curtains around him while he did his business. He was so out of it, we just left the bedpan under him for a few hours. John, the antroduodenal tech, will spend the most amount of time with you. He will have a long questionare for you to answer. he will spend time going over the log and will give you lots of instructions and support. he will visit periodically both days and he will analyze her data after the test. Dr. Darbari will be the one to call you and give you her DX. And, I know you're already being careful, but try not to make the TTT seem scary. She will be tightly strapped in place. She will not be hurt if/when she faints. All of her vitals will be carefully monitored. She will be given loads of fluid as she needs it. They are ready for anything and will keep her safe. Just be reassuring and calm. That's the best way to help her. You both will be in my prayers. Be sure to let us all know how it goes. (If you think of it- Let Dr. Darbari know Mack is much better and back at school full-time!) E-mail me: juliegee at charter.net if you have any questions. Hugs- Julie

Hi Hanna- I have had the same problem with Miralax. At times, it makes me so full and nauseous that I can't get it down. My GI has recommended a tiny dose of Erythromycin, 1/4 to a 1/2 tsp, prior to my Miralax. I take a little over 3 doses (17 grams each) at one time in one glass. I mix it with something yummy, like pomegranate juice (just an ounce or two) and I stir it really well and add sparkling water to the top of the glass. I pop in a straw and slowly sip it until it's gone. I imagine it's a "treat" as opposed to a med- that seems to help. Talk with your GI and see if you can't take a dose of domp or "E" prior to your Miralax. My GI recommends MOM (as much as it takes) every 3 days if the Miralax isn't doing the trick. The tummy can't empty if it reaches a dam downstream. It sounds like you've been through lots of testing. It's good to know exactly what you have, but then so frustrating when the doctors have so little to offer to help. Please do check out the International Yahoo Gastroparesis site. You will get lots of support and information there. Hugs- Julie

What a relief! Congratulations, Heidi. Try to relax and be good to yourself as you recover. Ignore your nasty relatives. This is a good time to surround yourself with people who make you happy. Julie

Welcome, Mary! I'm sorry I can't answer your question as I don't have a good answer. I have POTS and my son has NMH. At times, we both feel pretty symptomatic with OK vitals. Certainly, your symptoms are all part of the dysautonomia picture. Also remember, your BP could have taken a nose dive, but recovered by the time you checked them. BP and HR are so variable. It's impossible to get an accurate reading at our worst moments. Keep asking questions. Usually someone has an answer or similiar experience. At the very least, this group has helped me realize that I'm not alone with my goofy symptoms. Julie

Hi Nolie- My son had the exact same tests done at JHH a few years ago. I was also a nervous wreck. But, of course, everything worked out beautifully and we both survived. I am happy to answer any specific questions you have. You will be fine. I stayed with Mack alone at the hospital, while my hubby (who did accompany us for this one!) stayed back at the hotel. Mack brought his laptop to watch movies on during his stay. It kept him/us pleasantly distracted. I slept on a window seat/bed in the middle of the winter and FROZE. You won't have that problem:-) Your daughter will be pretty much confined to bed, except for bathroom visits. You will be given a log to fill out and note every time she eats or drinks something or has any unusual activity. Because of the manometry probe, they will want her to abstain from undue movement and snacking. She will be encouraged to eat several "large" meals during the 24 hours she is there. This better shows how the GI tract behaves during rest and during digestion. Quick note, JHH is fabulous, especially the group of physicians you are seeing; the food is NOT. There is a large cafeteria with many vendors including: Domino's, Subway, Smoothie King, etc. Any food she would like, you will be able to find. I was pretty nervous about how my son would react when he woke up from anesthesia with the probe up his nose, down his throat. He was surprisingly OK with it. They took a quick X-ray when he woke up to ensure the manometry probe was in the correct position. The worst part was trying to get a bedpan under him in recovery as he was still reacting to his colonoscopy prep. Poor fellow! That lasted a few hours. Early the next morning, you will accompany your daughter up to the cardiac wing for the TTT. You will not be allowed to stay with her. That was the hardest for me. Mack's BP was about to plunge prior to the test so he was soooooo anxious. He begged me to stay, which I was unable to do. I planted myself outside of that room until another cardiologist dragged me to a nearby waiting room. I was told the test would last an hour and a half unless something happend. I was called to recovery after 45 minutes. At Hopkins, they do a 45 minute tilt. If a patient hasn't exhibited signs of POTS (in the firdt 10 mins.) or NMH by that time, they inject a drug to simulate a bit of stress, then the test could conceivably last another 45 minutes. The"worst" happened to my son. I will share his experience so that you can reassure your daughter should the question come up. Mack experienced pre-syncope at 35 minutes, AND he vomited as his BP dropped to 40/0. Vomiting was very frightening with the probe in place, but it did NOT come all of the way out (it's very long as it reaches the small bowel). I think Mack was the first to vomit with the antroduodenal probe in place. It did not become dislodged. A doctor will be nearby, but not in the room for the TTT. The tech very appropriatley layed him back down as his BP dropped. He recovered somewhat and was immediately given several bags of IV fluid before he was brought to me. He was relieved and victorious after surviving all of that. I asked him how it was and he said, "It just felt like a normal day." At that point he was vomiting continuously and passing out 4-5 times a day. She will get her autonomic dysfunction DX immediately in the recovery room. The TTT will definately be the hardest part for you as you can't be there. But, she is in very good hands. She will be safe. Drink as much as you can, sit as much as possible. It is really a pretty layed back time as you will be waiting around and entertaining her. Is Dr. Darbari her GI physician? We love him! "John", was the antroduodenal manometry tech. He will spend quite a bit of time with you. He's also wonderful. It will take several weeks for him to read and analyze all of the data. The results from that test will take awhile. I know Dr. Rowe is already in the picture. Another gem. Your daughter is blessed to have such world class care. You both will be in my prayers. Please let me know if you have any questions. Hugs- Julie

Hi Hanna- Sorry you are dealing with such severe tummy troubles. My son and I (to a lesser extent) have had motility problems related to our dysautonomia. Like Rachel, I'm curious about HOW you got the DX of pseudo-obstruction. My son had a test called an antroduodenal manometry. It showed nerve damage in his small intestine and several 3 hour periods in which the food in his GI tract moved in the wrong direction. My son takes eyrthromycin to help with his motility. (I also took it for a while after I had my gallbladder removed- my motility was impaired for a 6 month period.) It really helped us. It caused that chronically nausous feeling to be replaced with actual H-U-N-G-E-R! How much domperidone are you taking? I know many have good luck with it. Are you experiencing lots of nausea? Do you take something for that? How about constipation? I had great luck with Miralax. Once I got my bowels moving, it helped to empty my tum, too. I wish I had more information...I found great support and information with all of our GI woes from the Yahoo International Gastroparesis Group. Check them out. My motility problems have spontaneously improved. I pray yours will, too. Julie

Ms. Friday- You pose some very interesting questions and have lots of insightful info. Thank you for doing that research. Oral progesterone had a very dramatic effect on me and the "diuretic effect" could explain it. My BP was so low, I felt like I couldn't breathe. I was too affected to do anything other than sleep and usually awoke feeling OK. I endured it for 10 days per my gyne's orders. It took me anbout a month to start feeling like myself. I agree that the relationship between OIs, CFS and hormones is a very promising area for research. My son at 12 y/o was DXed with NMH. He underwent a major growth spurt during that time- 6 inches in one year. Major hormones, too, I would guess. Since his growth has slowed, (he's now 6' 1") he's much better. He's also on lots of blood volume boosting meds that help. I don't notice the huge swings in HIS illness that I and so many other women here experience. In other words, he found a treatment plan that works pretty reliably. For us gals, maybe because of the constant change in hormone levels, some days our meds work and some days they don't. Friday, you face a pretty tough decision. My gyne also knows nothing of POTS and I will fairly soon be facing the same decision you are- I'm 45. My Mother and Grandmother (both also have dysautonomia- not formally DXed) and still at 70 and 90 suffer with hot flashes. They each have done some HRT at various times with some success....but the data is constantly changing & it's so hard to know what's right for each of us. The joke is, everything you read about HRT always ends with, "talk with your doctor about the RIGHT choice for you." What do you do when your doctor doesn't have a clue? Julie

I don't' know. I would say the dizziness might be a side effect of the pill but the low BP..makes me wonder. I'm going to see if I can find anything on Progesterone and blood volume etc. I tried researching the topic. There appears to be a well documented link between progesterone and hypotension- a rare, but consistently reported side effect. Another side effect that is listed is: "dizziness." What is that? Another name for hypotension? Yep, I was dizzy because my BP was so dang low. I didn't find any info on progesterone and blood volume. Let me know if you find anything. Julie

Oh Emily, Thanks for letting us know. I'll keep Melissa in my thoughts and prayers. Let us know more as you are able. Julie

Hmmm. Interesting thread. As estrogen drops prior to our menses, progesterone increases, right? I have lots of abnormal bleeding due to a large fibroid and my gyne put me on an oral progesterone for 10 days prior to my scheduled period to normalize things. I took it right before bed, but still noticed that I was horribly dizzy- I couldn't even get up to use the bathroom after taking the pill. Lo and behold, I checked my BP and it was 71/42. Could progesterone have the exact opposite effect that estrogen does (decreasing blood volume)and that's the reason we feel worse before our periods? Any thoughts? Anyone else have a hard time with progesterone? Julie

Hi Tessa- Sounds like you've been doing some detective work... I'm a little confused by your experience. Were you at the ER because you had an allergic reaction to novocaine? What symptoms did you have with the novocaine that brought you to the ER? Then, (if I'm understanding things) as treatment for the allergic reaction, the ER administered Timolol. Strange choice of med. Did they think you'd had a heart attack? Then, did you have another reaction to the Timolol? Was one or both of your reactions anaphylaxsis? Is that what you are trying to figure out? I'm sorry that I'm so little help, Tessa. Does this allergist, who is carrying out the tests, have a good reputation? If you have known drug sensitivities/allergies to certain meds, it seems pointless to re-expose you. Here in the United States, if a patient has a bad reaction to a certain medication, it is noted on our medical charts and we are not given that drug again. I can see why you are nervous. It'd be interesting to have Doctorguest comment on your experience. Julie

Hi Anna- If salt alone is doing the trick, definately stop there. Salt and increased fluids helped my son, but he still needed more. He was experiencing pre-syncope several times a day. At his worst he took 6 Thermotabs a day and .2mg of florinef. Thankfully he's much better and only takes .05mg of florinef and 1 Thermotab a day now. I hope your children keep feeling better and better. Julie

Becca- If it's hard to breathe, then definately see your PCP ASAP. I had increased chest pain/pressure/tightness when I breathed in when singulair helped. If breathing is difficult you need someone to take a listen. What's your BP doing? I recently took progesterone to help regulate my period and my BP took a huge nosedive. I had trouble breathing and found my my BP was 71/40. I fell asleep and awake feeling much better. Could your BP be super low? Julie

Becca, Before I was treated for Mast Cell Activation Disorder I got that feeling periodically. Singulair, 20mg, totally made it go away for me. Sounds like you need a doc to listen to your lungs/heart sooner than the 20th. Can you see your PCP sooner than your cardio? I don't mean to worry you. I lived with that feeling for weeks and nothing untoward happened:-) Breathing in made the heaviness worse. is that what you are experiencing? It could even be a virus or allergy. Let us know what you find out. Julie

Hi Tessa, You should get a script for your epi-pens right away. Here in the states, they come in a two-pack. It's important to always carry one in your purse, etc. And, they do expire...so be sure to stay on top of your expiration dates and get them refilled periodically. It's a bit scary to use one, but when you need it, it is a true lifesaver. You stick yourself in the thigh right through your clothing. For me, I feel better immediately. My poor hubby had to stick me the first time. I was so frightened to use the epi pen because a part of my anaphylaxsis reaction is a super fast HR (200BPM or more.) I feel like I'm about to pass out. I know epinepherine can make tachy worse...thus my fear. But, it doesn't with allergies. It restores a normal rhythm to my heart. After you use your epi-pen, you laways need to report to the ER just to be observed for a while. Once in a while, I need a slow epi-drip tp help stabilize things. Then, I have to get in to see my allergist ASAP. Is anesthesia the only thing that causes a reaction for you? Will you be tested for other things as well. Knowing your triggers will make it much safer for you. I've had weird reactions to anesthesia before too. I think your testing is going to make any future procedures much, much safer. I'd be frightened too if I were about to undergo the testing you are. But, it is obviously a really controlled and safe setting. they are anticipating an allergic reaction and will be prepared to handle it. You will definately be in my thoughts and prayers. Be sure to give us a full report when it's all done. Hugs- Julie

Wow Tessa, I can't advise much as I've never had the extensive testing that you are about to undergo. I did the anaphylaxsis series of scratch testing at my allergist's a few years ago as I appeared to have a few episodes. I, too, was nervous as I was afraid of what my body would do. My allergist assured me that this was a VERY controlled setting and I'd be OK. I was. I also wasn't officially allergic to anything! I've since learned that pistachios and holly (when it scratches my skin) will set me off. Extreme stress and PMS, and menstruation can also be a trigger for me. I'm being treated for Mast Cell Activation Disorder (MCAD). You, too, will be in a very controlled setting. Epinepherine will be administered via IV should any reaction occur and (as long as the reaction is truly an allergic response) it should promptly help you. I've had to use an epi-pen and it immediately stops my symptoms. You will have a medical team monitoring your every reaction and reacting as needed. They will have an arsenal of other drugs at their disposal to use as needed. I guess the most difficult thing for you will be to control your stress level to accurately access how yor body is reacting to different agents. Very scary indeed- knowing you will be given meds you are supposedly allergic to....I guess in the long run this testing will render you much safer when needing anesthetics in the future. Let us know when the test will be so we can say a prayer and cross our fingers and toes for you:-) Julie

We're in Northeastern GA. 110 degrees hot with almost 100% humidity! Angela/Cardiactec, we lived in Topsham ME for 5 years. You anywhere near there? Loved it- so beautiful! Julie

Hi Anna, My son doesn't have EDS. He does however have lots of GI problems and he is able to tolerate florinef and salt tablets. My son's autonomic problems first presented with chronic nausea, vomiting, acid and bile reflux, and early satiety. He lost so much weight when he was 12 y/o that we ended up seeing a pediatric motility specialist at Johns Hopkins. Mack was found to have a neuropathy of his GI tract, secondary to his autonomic dysfunction. He's been treated with florinef and salt for 2 years now and has gotten great relief. He's had to take prilosec and/or nexium (for acid), erythromycin (as a prokinetic), and zofran (for nausea) during his treatment. As his autonomic problems have improved due to the florinef and salt, his GI symptoms have also improved and he's been able to back off of some of his GI meds. I know EDS patients also suffer with acid reflux and they can have more severe GI motility symptoms like Mack's. Not only has Mack tolerated the florinef and salt; it has greatly helped to improve his GI symptoms. Best of luck to your child. Please PM me if you have any questions. Julie

Hi LindaJoy- Yep. I've had those symptoms AND I was tested for angioedema, which I did not have. Thank God! I've had symptoms of anaphylaxsis and have gotten relief from an epi-pen. Have you ever tried one? My allergist is now treating me for Mast Cell Activation Disorder (MCAD) and lots of my autonomic problems and swallowing/breathing problems are much improved. I still carry an epi-pen to be safe. You've been tested for mastocytosis right? If your skin biopsy and bone marrow test were negative and you still have symtoms, you may have MCAD. I hope your angioedema bloodwork is negative. I remember waiting for those results was scary. You're in my prayers. Julie

...when you squat to pee in a public restroom and you get so lightheaded, you have to decide whether to fall backwards (yuck!) or forward (almost equally yuck!) Julie

Angelika, First let me say how sorry I was to hear about your TTT debacle. What a nightmare. I'll never forget when my son had his TTT at Hopkins. He felt awful and didn't want me to leave, but they insisted. As a Mom, I couldn't pray that he'd be symptomatic...I wanted to rescue him. I remember praying "Please let the TRUTH come to light." He fainted and barfed. Good- as he was also in the midst of an antrodoudenal manometry and they were able to link the autonomic dysfunction with the GI motility problems. It's hard to understand why your "TRUTH didn't come to light" at the right time. Is this God's sense of humor? Hard to find it funny.....I just wanted you to know that I get that tingling, esp. around my mouth before a faint. I pray you find answers and get the help you need. Hugs- Julie

Angela- I'm probably almost old enough to be your Mom, so please excuse my nagging:-) But, Angela, you have NO business using caffeine. With such an incredibly high HR?!?!? Are you kidding me? It is tough to stop, but very do-able. I stopped ALL caffeine for years when my POTS first reared it's ugly head. Even a sip would send my HR into 3 digit numbers. Despite the fact that I was only having one cup of coffee daily, with maybe a diet soft drink during the day...going cold turkey was difficult. I had a horrible headache and even body pains (!!!!) for one day. The next day, I was fine. Restricting caffeine (even a small amount) definately helped stabilize my HR. I suspect that would be the healthiest for you. When my son was recently very ill and underweight, I had him drink fruit nectars (like apricot) and fruit smoothies throughout the day. Tons of calories! Gingerale and Sprite would be great to sip while at work- easily available at a vending machine, caloric and hydrating. Gatorade would also be terrific. Also, have you tried those new vitamin waters? They have some calories (about 50), but they are so soothing and actually good for you. I sipped those when I was at my worst as I wasn't getting much nutrition from food. Once again, pardon my cyber-nagging. I just care. Julie

Hi Nicole- If you are a part-time student, you may be eligible to receive services from the university's health care system at the school where you are attending. Check into that. I have a few other ideas I'll look into. Julie

Oh Mary- It's important to find a balance between living your life and getting obsessed about your illness. Your doctor can make any recommendation that he/she would like....but YOU have to decide what works for you. Maybe just check in if you have a specific question. Or, if you want to know if anyone else has experienced something. It doesn't have to be black or white. There are many shades of gray. And, maybe checking in occasionally would work better for you. Regardless, you're a sweetie & I've enjoyed you. It's fun to have a young person's perspective since so many of us are raising young people with autonomic problems. I wish you all the best! Julie