juliegee

Oh Melissa- I'm sending prayers, good thoughts and hugs your way. You've been a rock for so many of us. Get better, quick!!!! Love, Julie

Unfortunately, Douglas, for folks with severe motility problems mega-fiber is a no-no. Goes against current wisdom....but, if things aren't moving correctly because of uncoordinated nerves in the GI tract, the fiber sits there and swells and swells and swells. It can actually cause obstructions. Low fat, low fiber is the best diet for motility issues. Not only am I affected, but my son as well. He sees a motility specialist at Johns Hopkins. Thanks for the thought. A vegan diet would be very helpful for most folks with "garden" variety constipation. (Excuse the pun!) And many folks with gastroparesis and other GI dysmotilities do enjoy vegan diets. They just have to cook the dickens out of veg until they are mush. And, eat canned soft fruit. Julie

Oh Wilows, I'm so sorry for all you are going through!!! Unfortunately, I'm having VERY similiar problems- sans the eye thing. I can sooooo relate. I'm going about once a week ( if I'm lucky) and feeling horrible, so bloated and nauseous. Is your doctor considering gastroparesis? Mine is. I'm sometimes so nausous, I get car sick- even when I'M driving. I have cut out all dairy, but haven't considered wheat. I'm on zelnorm, colace, miralax and now my GI has added Amitizia. Have you tried any miracle drugs yet? Please know you've got a fellow-sufferer across the pond. Keepme posted on your progress. Julie

Amy, It's so scary when your precious child is sick. I will pray that God will hold him im the palm of His hand during this difficult time. And, you, Amy will be in God's other hand. Hang in there. We are all pulling for YOU. Hugs- Julie

Me too, India- regarding the decaf. I don't trust that a mistake might occur, whether by accident or on purpose. Julie

I know that many of us suffer from constipation. Mine just started this June, but it seems to be getting worse and worse. Fiber seems to bloat me, rather than help. I walk 20-25 miles a week and drink tons of water, to no avail. I need 400mg of colace and zelnorm twice a day to get any result. WHY do so many of us suffer from constipation? And, what helps for you? Julie

Hi All, I don't consume any caffeine. A few years ago when my autonomic symptoms were horrible, even a sip of a coke or coffee would set off a full-blown tachy episode. I've voluntarily (because I'm a chicken!) given it up. I was wondering if any of you can tolerate it? Julie

That describes me, as well. I've had periods where I'm very symptomatic. But, now, Thank God, a high HR upon standing is my biggest symptom. I exercise (walk at least 20 miles a week) and drink water until I'm swimming. Oh!, I also salt the dickens out of everything i eat. I think your friend has POTS and is very lucky. Julie

Hi Royler- Welcome. As one member jokingly said, we should all qualify our comments with "I'm not a doctor, but..." ....I would guess that you have chronic fatigue syndrome. There is huge overlap with CFS and orthosatic intolerance (POTS, NMH.) My son has all of the symptoms you've described. He has CFS and NMH. A tilt table test would be a great place to start, conducted by an electropsysiologist who understands POTS and NMH. Let us know how old you are and what state you live in and we can better help you find a doc. All the best- Julie

I'm sorry to hear that as I know Rumination Syndrom can be pretty miserable. However, because my son has motility problems, I have heard of several people who've been successfully treated and can eat pretty normally (with treatment.) Best of luck to you. Please keep us posted on your progress. Hugs- Julie

Hi Jess- How frustrating when you are waiting for important medical results and you miss the call. It takes AGES to get back in touch with the doctor, especially over a Holiday week. I don't know what your symptoms are, but check into "Rumination Syndrome." Best of Luck. Julie

Wow, I don't want to scare you. (Based on your symptoms, it sounds as though the crisis has passed.) BUT, potassium levels are NOT something that you can mess with. From my understanding, too much or too little can be VERY dangerous. You need to get your electrolytes checked ASAP or NOW- whichever is sooner! Julie

My son, 13y/o, also has NCS (otherwise known as NMH) and showers are hard for him. He regularly takes an 8mg zofran following him AM shower. Showers later in the day aren't as bad- for whatever reason. He often lies down for a few minutes after his shower. Definately ask your doctor for zofran or kytril to help your symptoms! Julie

The difference between the diastolic & systolic numbers is called the "pulse pressure." When there is a wide spread between the numbers, it is generally considered to be a bad thing, indicating inflammation and disease. This is usually indicative of high BP. When you have a narrow pulse pressure, it is usually considered to be positive, indicative of very healthy vein walls. However, when the pulse pressure is really narrow, it is worrisome because of the symptoms you've listed- lightheadedness, etc. This is usually indicative of very low BP. I'd definately mention it to your doctor. Julie

I'm sorry to hear of all of your hardships and losses. And, yes, I think stress can bring on this condition, but only if it was already there (dormant) in the first place. My worst autonomic problems also came at a very stressful time in my life. In other words, stress surely exacerbates this and many other conditions. All the best to you- Julie

Susan, I've done some searching on the internet. As a rare side effect, klonopin can cause uncontrollable motions and even seizures. Side effects from meds can happen at any time. Just because you took klonopin w/o sed effects doesn't mean that they can't form later- after weeks or months. I'm confused as to why your doc put you on an SSRI for this uncontrollable rocking motion. Layering meds hardly seems the way to go especially if this is a drug reaction. But, don't stop anything w/o your doc's approval. Celexa can have withdrawal side efects. Do talk with your doctor or pharmacist about the likelihood of klonopin causing your symptoms and follow medical advice to figure this out. I wish you all the best. Your symptom sounds really frightening. Hugs- Julie

No, he takes 2 Thermotabs following each meal. They are easy to tolerate and help (in and of themselves) with POTS. Julie

John, As far as timing, take it with food. Mack takes .1mg in the AM and .1mg in the PM. Even when his dose was smaller, he split it up to keep the dose constant. Julie

Oh Dayna- I hate to hear about this new symptom. But, YES. Mack had the same thing happen to him before he found an effective treatment plan for his OI and motility problems. He hated the car because he vomited almost every time he rode in it. He still takes an Alleve and 8mg zofran (he says zo') before he rides to school in the AM. Prior to finding a treatment plan that worked, riding in the car brought out his symptoms big time. After arriving at our destination, he would lean his body against the car for stability, and vomit. It took him almost 20 mins to stabilize from the lightheaded, nauseous feeling. I hope your doctor is working on tweaking your regimen. This feeling and the subsequent anxiety is all part and parcel of your POTS. This is not a separate issue that should be relegated to your psychiatrist. Best of luck to you. You're in my prayers. Hugs- Julie

Hi John, Florinef has been a wonder drug for my son. Do some more research. It has steroid properties, but none of the negative side effects of a true steroid. My son's doc, the incomparable (we think!!!) Peter Rowe of Johns Hopkins had Mack start slowly with florinef. He first began by taking 6 Thermotabs (salt tablets) daily for several weeks. Two after each meal. Then, Mack began by cutting the tiny .1mg pill into quarters. He took 1/4 daily for a week, then 1/2 daily for a week, etc. He ultimately worked his way up to .2mg a day. The reason for this protocol is to find your therapeutic dose and not get the "headache from ****." Once your symptoms have pretty much abated, you've found the dose that works for you. Florinef in too high a dose can cause a horrible headache. During this process, it is important to have your doc keep track of your electrolytes as florinef can ause you to lose potassium. Mack supplements with a daily slow release 8mg. (The Thermotabs also have potassium.) I'd be hapy to post or pass along to you information from Dr. Rowe describing this protocol that you could share with your doc. My son was forced to drop out of school because he was fainting throughout the day. He was unable to focus or think because of the cognitive fog. Within a year, he is back at school fulltime and just brought back his first report card since florinef- straight A's. I pray this is your miracle, too! Julie

My son is Dxed with an autonomic neuropathy, affecting his ability to digest food, maintain BP, HR and body temp. At times, he was uanable to eat, fainted constantly, had a body temp of 95 and a HR in the 30's. With treatment, he's gotten MUCH better. He's 13 and actually attending school full-time. He hasn't missed a day this 1st quarter and somehow managed to squeeze out straight A's. Excuse my proud Mommy talk He was sooooo sick, I thought he had no future. I just want to illustrate to you how much things can improve. There is so much hope! A really good doctor, who is willing to tweak your regimen as needed, is key. Best of luck to you! Julie

Thanks guys for sharing your experiences. I tried a half pill this AM. (On top of my regular dose of miralax and stool softners.) I had almost immediate cramps and "D." (Almost as good as a colonoscopy prep!) They lasted a couple of hours. Wonder if my reaction would have been less if I hadn't done my regular constipation meds. I may try again tomorrow AM. I'll let you know how it goes. Thanks- Julie

I'd recommend a HIDA scan. It definately sounds like BG problems. Best of luck to you. Keep us posted. Julie

I'm sorry I don't have any solutions for you, but, YES. When my POTS symptoms are really bad, I also experience the throat closing thing. It never actually closed (and I hope yours doesn't!), but, it feels like a lump in my throat. I have trouble swallowing. Amy (Calypso) may be on to something when she talks about mast cell activation. I've never really figured mine out. I've actually used an epi-pen during a bad attack and it helped and actually slowed my HR. Go figure I do know that sleeping alot, relaxing and meditating really help with this. Best of luck to you. Julie

Wow! I've been meaning to post about this. I was just hospitalized for the past week with a major GB attack. (I'm also not a typical GB patient as I'm quite thin and don't eat fatty foods.) I finally had a colonoscopy for my chronic constipation. I was thinking that it went pretty well. However, I felt a little nauseous afterwards. I didn't feel like eating. Around 10PM that night I finally had a few handfuls of popcorn. (So, I went 2 days w/o eating) I woke up at 1 AM with the most God-awful pain I've ever felt in my chest and between my shoulder blades. No position made it better. I couldn't even breathe. I passed out and hubby got me to the ER. I woke up when they hooked me up to the morphine. I ended up having LOTS of tests. the only unusual ones were high liver count and a 30% on the HIDA scan. The ultrasound didn't show any stones. I had a fever and chills. The symptoms have abated and I am able to eat pretty normally now. I never had GB symptoms before this big "attack." My (lined up) surgeon thinks the fasting/dehydration required by the colonoscopy set all of this into motion. Now, I'm wondering......is this coincidental that so may of us have GB issues? (I'm thinking not as we don't seem like "typical" GB patients.) And, does getting the GB out resolve any of the motility problems or just relieve that pain? I'm hesitant to have the surgery as I haven't had GB issues before this. Any advice? Thanks in advance- Julie