juliegee

I just want to pass on a big hug to you. My son and I both deal with dysautonomia. NMH for him and POTS (at least) for me- I haven't done a formal TTT yet. Dr. Rowe is his ped too and a real gem for us. The second doc who totally believed him and didn't accuse him of mental illness, etc. (The first was his motility specialist at Hopkins) I recently spoke with Dr. Rowe about my POTS and recent GI motility issues. He wasn't surprised at all. He said that many of his patients have another family member- parent or sibling similiarly affected. You guys aren't alone and I'd love to offer support in any way. Hugs- Julie (and Mack 14 y/o)

Dayna- You've already gotten excellent advice. Relax and enjoy yourself! Big hugs- Julie

Both my son (NMH) and I (POTS) have really low temps. Like Rhonda, my son will be sweating and have a temp of 95. Very strange. Like many of you, I often feel really cold. I sleep with a heating pad every night just because it feels so good and warm. I'm certain this is further disregulation of our autonomic nervous systems. Julie

Yes, definately. I've randomly taken my BP via electronic cuff (which also gives HR) and I've been shocked by numbers like 120-140 when I feel fine- running around being busy and productive. When I'm aware of a really fast HR, I have symptoms like almost fainting or being unable to breathe easily. It's almost like a switch is flipped then. I actually hear a buzzing in my head. Very Weird. I would imagine that most of us are so used to fast HR's, we don't think much of them. They are the norm to us. Excellent post. I'm glad to know I'm not alone. Julie

Hi Alana, Yep, I've had some pretty strong chest pain, too and I'm in excellent shape cardiovascularly- is that a word? After good EKG's and echo's, my internist said not to worry. No explanation for the pain except that it is a symptom of POTS. Just another something to live with. Occasionally, I get a different chest pain, where it hurts to breathe in. When this happens, I take a Singulair and it goes away immediately. That must be allergy related. Thought I'd mention that in case something similiar is happening with you. Julie

Very interesting. Dr. Peter Rowe of Johns Hopkins believes that orthostatic intolerance: POTS or NMH or both, comprises the basis for CFS. He gave me a diagram to DX CFS with OI in the center. Radiating out from OI are other overlapping conditions: depression, anxiety, food allergies, inhalant allergies, asthma, infection, movement restriction, Chiari type I or c-spine stenosis, EDS and finally pelvic venous incompetence. I believe he said that if you have several of these other factors going on with your OI, you have CFS. I find it puzzling that these European doctors, while definately hitting on many important aspects of CFS, never directly mention OI's. Dr. Rowe and Dr. Bell are definately on the same page. Julie

You've already been given excellent advice. I highly recommend the halfLytley. It works, but isn't too much to tolerate in terms of nausea, etc. Only a half gallon of liquid- 4 large glasses. Definately, the dehydration (from the prep) could be causing the tachy. Stay away from a prep called Phosphosoda. It sounds tempting as it's a mere 1.5 oz, but it seems to bring on strong tachy due to it's potency. Make sure your GI knows about your condition. Pre-arrange to arrive at the hospital early (during prep) for IV fluids if you begin to get tachy during the prep. As far as the sedation, I'm a big fan of it. I had a colonoscopy with sedation that didn't work and it really, really hurt. Those of you who can tolerate it w/o are much braver and stronger than I! Make sure an anesthesiologist is present to help you if you have a bad reaction. I'm keeping my fingers crossed for you. You've already had a bad experience, so I know this one will be GOOD! let us know. Julie

Hi Amby, I think Cardiactec could be barking up the right tree...Check out my post under "MY Ttt Experience." My son's physicians were definatively able to link his nausea, etc. to his autonomic dysfunction. His docs call it an autonomic neuropathy of his GI tract. I think many may have this same DX w/o realizing it. A Gastric Emptying Study is the best place to start. Julie

julie, did they find any correlation with the gastric motility <manometry> and orthostasis on your son? man, i cant imagine going through all of what your son went through! the tilt is bad enough let alone and then having to have a tube down your nose and into your tummy all at the same time! rough! Yep. There was a strong correlation between his GI motility problems and his OI. His manometry went wacko during the pre-syncope- as evidenced by the vomiting episode. Mack's pediatric motility specialist at Hopkins is Dr. Anil Darbari. To my knowldege, he is the only one who does both tests at the same time. The last time I checked with him, he had found several dozen kids with the same correlation. He works closely with Dr. Peter Rowe. Dr. Darbari was able to say with certainty that Mack's GI symptoms (reflux, nausea, vomiting, early satiety, huge weight loss) were caused by an autonomic neuropathy via his OI. And, now that his OI is better controlled, his GI symptoms are improving quite a bit. He's taking less GI meds and is able to eat better and better every day. The intubation during the TTT was really rough and he (and all of Dr. Darbari's kids/patients) are so brave. At that point, Mack was vomiting and fainting several times throughout every day. When the test was over, I asked Mack if it was horrible. and he replied, "It just felt like a normal day, Mom." We were so relieved to have an explanation for his symptoms. They let your HR get to 200BPM??? Yikes. as I recall that's not too far from the norm for you...Right? Oh dear, it's hard to imagine how you function. You're one tough cookie! Julie

Hi Tessa, I know I'm jumping in here late, but I do have a few comments. POTS occurs when your HR goes up at least 30 beats in the first 10 minutes. If your HR got up to 30 beats higher at 11 or 12 minutes, technically, you DO NOT have POTS. Examine your print out of you have one and determine your own DX. Vasovagal syncope or NMH often occurs with POTS. But, not always. My son had his TTT at Johns Hopkins with an antroduodenal manometry probe down his nostril, back of his throat, into his tum and small bowel. Can you imagine? (He was in the midst of GI motility testing and his doctor was trying to relate the two- GI motility problems and orthostatic intolerances.) His HR got to 139- 14 minutes into the testing. He is NOT DXed with POTS. At 34 minutes. he had his BP drop from 120/80 to 25/0. He vomited (with the probe still in place) and experienced what they called pre-syncope. So, even with that low of a BP, he didn't actually faint. He is DXed with NMH or vasovagal syncope. It is very closely related to POTS. Many symptoms and treatments are the same. At Hopkins, they very quicly forced 2 full bags of IV fluids into his IV immediately after bringing down the tilt. When we saw him in the recovery room, he was still a bit nauseous, but basically OK because of the fluids. I can't believe they just told you to drink alot. OMG! A few bags of fluid would have done wonders for you at that point. Also, I hate that you were given meds so soon into your test. In a good test, they wait 45 minutes to see if your BP will drop naturally. At 45 mins, they usually administer drugs through your IV to see if they can invoke symptoms. I feel like you weren't given much of a chance to let your symptoms play out the way they do every day. Excuse all of my ramblings, Tessa. I just wanted to compare your experience to Mack's because his was done by experienced professionals that were looking for POTS. My son takes 3 Thermotabs, .2 mg of florinef, 8mg of potassium, and 15 mg of lexapro daily and he is basically normal on that regimen. I hope whatever regimen they put you on helps. All the best to you. Hugs- Julie

Good for you, Niki! Yes, definately. I notice a huge improvement in my HR's when I exercise. I try to walk 3-4 miles every other day and on the off days, I do pilates. My son's and my PT has taught us that with good range of motion, an autonomic dysfunction will improve. Dr. Rowe at Hopkins backs up this idea. I try to think of exercise as something I HAVE to do to maintain my health, not my figure. But, somethimes it's hard to squeeze it in and keep my motivation up. I'm proud of you. Keep it up! Julie

You made my day too, sweet Melissa! I GET the uphill climb you are still facing and admire you for taking time to savor the small victories, like a seated shower, the opportunity to E-Mail us, etc... I will continue to pray that the feeds "rehab" that small intestine to a point where it's no longer so dangerous to you. You have overcome so much. I believe you will continue to amaze us all. Keep on posting about your experiences and feelings. Ultimately, we all have to face our own mortality, but not as directly as you have recently. You have shown incredible courage and wisdom. Keep swimming, gal. We have lots to learn from you. Big Hugs- Julie

Me too! Give us an update someone... Big Hugs- Julie

Hi Amby, My son has NMH. He's rarely fainted all the way. (Only when he has blood drawn or hurts himself badly i.e. a sprain, etc) He often has pre-syncope. He lies down and props his feet up to get blood back to his head. His DX was made on the basis of his TTT. After 30 mins of standing, his BP went from 120/80 to 45/0. He vomited and the test was concluded. I think many with NCS or NMH don't necessarily faint. With florinef, Thermotabs, Lexapro and potassium, he is just about "normal" again. Julie

Pooh Bear- I'm so sorry for all you're going through. I'm sending prayers so that you'll be healthy enough to undergo whatever procedures you need. I am not really clear on WHY your hysterectomy is necessary so my comments may not be helpful. But, they may be... I also was having very heavy bleeding due to a large uterine fibroid. I was told that I had no other choice other than a hysterectomy. I did some research and found a procedure called a uterine embolization. It was MUCH less invasive than a hysterectomy. An interventional radiologist threaded a catheter through my femoral artery, near my groin and located the veins that were feeding the fibroid. He then shot some plastic particles into the veins that cut off the blood supply to the fibroid and hence, the fibroid has shrunk significantly. My periods are much, much lighter. My fibroid went from 10cm (with severe bleeding & other bulk symptoms- couldn't poop or pee:-) to less than 4cm (with NO symptoms.) If a fibroid or many fibroids are causing your out-of-control bleeding, consider this alternative procedure. I stayed overnight in the hospital just to be certain I was stable, but I was back to normal within days, not weeks. With my autonomic dysfunction, this was a much better choice for me. I still have my ovaries and don't have to worry about handling hormones. I pray you'll be well enough to get the treatment you need. Hugs- Julie

Tessa- Marvelous! THAT is GOD at work, taking exquisite care of you. Julie Hi Tessa- Marvelous. THAT is God at work, taking exquisite care of you. Julie

Thanks Emily and Kristen (and everyone!) for keeping us informed. I will keep Melissa in my thoughts tomorrow as she deals with her tube placement surgery. I am also praying that the sepsis will NOT return with the discontinuation of the anti-B's. I also hope our sweet Melissa can tolerate these feeds to keep that small bowel from being a breeding ground for bad bacteria. I hope the hospital keeps her until she feels stable enough to return home. Don't be frightened sweet Melissa. We all love you and are pulling for you. Trust that you'll keep getting stronger and stronger and keep that infection at bay! Big Hugs- Julie

Hi Pat- As long as your urologist knows about your prior history and he/she takes all proper precautions, I think you'll be fine. The fact that they've booked a surgical suite is a good sign. They are taking this procedure very seriously and are proceeding very cautiously Ages ago (about 20 years), I had a cystoscopy via a US Navy urologist. My husband was a young Navy pilot at the time. It was a HORRIBLE experience. I was given NO sedation and it was sooooo painful. My bladder was already so inflamed. Once I got home, I layed on the sofa w/o moving for days afterwards. It felt like I'd been raped. Very uncivilized. Conscious sedation would have been a very good thing. I think with sedation, it will be a piece of cake for you. I highly doubt they will use general as they let me go w/o any anesthesia. You should suffer no ill effects. Make sure they have an IV drip going and you are well hydrated before and during the procedure. I'm not trying to scare you. Just wanted you to know that youu're very LUCKY your doc plans on using some sedation! I know you'll have a very different experience from mine. Let us know how it goes. Hugs- Julie

Oh Dear- I am so sorry about the assault. Of course, the stress, fear and vulnerability of that situation must add to your physical symptoms. Have you spoken to a professional about what happened? Do you have the energy to press charges, etc? I'm so glad your guy came to support you. Please talk about this to anyone you trust to work through your feelings. What happened was awful and not your fault. Rest and heal, my friend. Working out your meds is important, but working on your feelings/fears may do just as much good. Our minds can definately cause our bodies to go haywire. Hugs- Julie

Jacquie, I've brought this up before....hate to nag, but have you been evaluated for gastroparesis? It's a common condition to have with POTS. The autonomic dysfunction is thought to play a part in a neuropathy of the GI tract. Many here suffer from it and other motility problems. The chief symptom is NAUSEA. I thought you had previously been scheduled for the GES (gastric emptying study.) Have you done that yet? It's not the most reliable nor conclusive test, but it's a good starting point in evaluating your symptoms. About the "D." If you are suffering from impaired motility, in the tum, small bowel, or colon; a bacterial overgrowth can easily occur. The primary symptoms of that are cramping, nausea, and "D." You may have a few things going on. Run to that new GI and try to get things figured out. Small frequent meals are probably the way to go until you can get a DX and treatment. I'm sending positive energy your way! Julie

Now y'all know I watch garbage TV sometimes....I did see an epsiode in which one of the young women fainted. She went straight back and hit the back of her head REALLY hard. From what I remember, she had just recently (like the day before) gotten a hair weave. The doctors say that it (the padding) saved her life. Is that the same episode that you're talking about? I wondered about POTS or NMH. I didn't see the part where she blamed it on her vagus nerve. She certainly fit the supposed syereotype of the POTS patient- tall and thin... Julie

I actually got to chat with Melissa yesterday. What a brave and inspirational young woman! Lots of folks from the Yahoo International Gastroparesis Group (Melissa's also a member there) are working hard to help find her a doctor/hospital that has experience with this type of chronic sepsis. I pray that she can be effectively treated there in Toledo or can find a physician who has the answers she so badly needs. In the meantime, I will keep seaching for recommendations via the other group and am holding Melissa in my thoughts and prayers. Julie

Emily, thank you for the update. How discouraging! I belong to a gastroparesis support group (that Melissa used to be active on) and one of the women there had something very similiar going on. I think they eventually figured out that the bacteria was leaking through her small intestine via a tiny hole in her liver and very effectively (and dangerously) spread thoughout her body. I believe that woman was treated at a teaching hospital in WI. I will E-mail her and see WHERE she was treated and if she has any "pearls of wisdom" to pass on to Melissa. In the meantime, please pass on my continued love and support. I'm praying hard and KNOW Melissa will get through this. Big Hugs- Julie

Oh, Dear. Quite sensational! I was hoping for informative.... Julie

Hi All, I know that many here suffer from Ehlers-Danlos Syndrome (EDS) and others worry that they may the disorder. Primetime is doing a show tonight on ABC on EDS. I'm not sure what time, 8 or 9PM EST? Julie