john redman

Does dysautonomia cause a loss of bacteria in the gut? Is that why probiotics help? John

What are the side effects of Reglan (metaclopromide) that people have suffered. It looks like I will be taking it the rest of my life for gastroparesis. Thanks. John

Wow, it's nice to hear that people actually get better with time! I thought it was going to get worse with time. I'm still struggling to get a diagnosis and see for sure what is wrong. I'll be traveling to a Dysautonomic clinic next month. And, be seeing other docs as well. Thanks, John

My gastroparesis, epigastric bloating, and constipation are hard to deal with. Lately, I've been eating Activia yogurt and swallowing EPS lactobacillus, Trinity lactobacillus, and Culturelle lactobacillus, each night, before my last meal. This seems to help. I hope it helps someone else. My best, John

I can't sit or stand. I'm down in a Laz-Y-Boy chair, reclining all day, or in bed. That's how I live. When I get up my lightheadedness gets worse and worse and I get a headache. It's like when I stand or sit the water level in my brain drops and my headache is above that waterline. It really really stinks to be me. Why, oh why? John

Melissa, Do you think your neck injury caused your autonomic failure? I have had two neck surgeries! John

I'd like to know if constipation, gastroparesis, and autonomic dysfunction can all go away with one medication. John

Do you need to come off Florinef before having your tilt table test? For how long? I was given the Florinef by a local neurologist in a rural area, but plan to get tilt-tabled at a medical center a month from now. Thanks, John

Where did you catch the Lyme disease at? What part of the USA or world? Thanks, John

Does the headache you can get from Florinef start after the first dose, or after taking it several days? Thanks. John

We all seem to have hyperacusis - loud noise sensitivity. I have hyperacusis and tinnitus - ringing in my ears. I agree loud noise seems to make things worse, like the noise in a restaurant.

My doc never mentioned salt pills or potassium or half a pill or anything. I really glad you posted. Does you son take the thermotabs all at once? John

Thanks for all the Florinef, good, bad, and ugly posts. Do people tend to take it in the morning or at night? Which is better for side effects? Why does Dr. G and others say it is not a long-term medication? Thanks, John

Florinef is a steroid, fludrocortisone Acetate. I was just prescribed to start it, and I have searched and read a bunch of back posts on it. I'd like to hear from those who had GOOD experiences, as well as from those who had BAD experiences with it. From all the old posts, it's hard to tell whether this is a good medicine that is generally well-tolerated and helpful, or if it's a bad medicine that has many side effects. What do people really think about Florinef? Thanks, John

Dear Group, When I lie down and then sit up, my systolic blood pressure drops as much as 39 points, and my pulse increases as much as 50 points. Is it typical of POTS for both blood pressure and pulse to change so much. Some days, the pulse does not go up by 30 or more when standing. But it is true that usually, despite the title of this thread, that the pulse goes up by more than the systolic blood pressure goes down. Thanks, John

Hi Deanna, What is the rationale for taking octreotide injections. It's kind of a hormone like somatostatin if I am reading up on it correctly. My best, John

i have been taking Reglan and it seem to help me a lot. Not other constipation or abdominal distension med has helped as much as Reglan. No side effects yet, but I am afraid they will eventually happen.

thanks all. I'm still working with my GP as I am far from a specialist in Dysautonomia.

My doctor put me on Cymbalta (duloxetine HCL). Does this make any sense for this disease? Cymbalta is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI), approved in the US to treat diabetic peripheral neuropathic. Has it helped anyone? Thanks, John

Dear Group, Is there a way to tell if you are having autonomic neuropathy versus peripheral? Is there a list of questions that can distinguish the two? Thanks, John

Thanks for all the responses. Now for the big question! Does anything really help someone with my symptoms?

Dear Group. I don't have a diagnosis. My main symptoms are feeling extremely cold, being very sensitive to cold, being lightheaded when I sit or stand, headache after sitting or standing, being weak, bloating and constipation. My thyroid tests are normal with a TSH of 3.17. I have had two neck operations for herniated disks and am wondering if this is coming from my neck. But it seems like dysautonomia patients are supposed to be hot not cold. On a home blood pressure machine my Systolic blood pressure falls as much as 30 points upon standing and my pulse rate goes up as many as 30 beats. Drinking caffeine and eating salt helps a little bit for about 1 day, then are useless. I am essentially bedridden from this. Please help with any ideas of where to go or what to do in the USA. I would like to go south for the winter because of the cold intolerance.