Sushi

Patricia, Here's what I felt though some others have felt nausea. For me it was like speed at first, and, if I remember, some itching, though not hives. I actually opened the capsules and dumped some out, then put them back together. My doctor gave me permission to do this, though it wasn't exact dosing, I did it by eye. However it worked and I am glad. My doctor usually starts people on an every other day or an every third day initial dose for a couple of weeks. I forgot to mention another great benefit I find from strattera: I am no longer freezing cold in the winter. I got through the winter in normal winter clothes, normal indoor temperature, without that freezing to the core feeling I used to have.

Hi Patti, I take strattera 10 mg two times a day. It helps me a lot, but then I don't have POTS. What I notice is the vasoconstriction--if it is wearing off and I stand up and walk, my legs feel like lead and a get a bit fainty. It has also helped remarkably with fibromayalgia--circulation improvement? I now back up the strattera with one dose of cymbalta and small doses of adderall and this combo has pretty much stopped my BP from falling. My pulse is up a bit (10 points) and my BP is classically normal. After they all wear off, my BP goes back to the low end of normal. I have no bottersome side effects now from strattera, but it was devilishly hard to tolerate it while trying to get up to dose. I had to start with a tiny dose every other day and it took a couple of months to get to 10 mg. twice a day. Hope this helps.

Hi, A friend of mine had a temporary gastric stimulator put in for 3 days and felt absolutely marvelous. She is now scheduling a permanent one. Hers was done by Dr. Thomas Abell at the University of Miss in Jackson. I don't know if it was transcutaenous as she had wires coming out of her mouth!

I can't comment on your response to cymbalta but can only share my own. I've been taking 30 mg once a day for about 5 months. My doctor gave it to me not for depressive issues but to help stabilize my BP and other dysautonomia symptoms. I also take stattera and together they have done this pretty well. When my doctor added the cymbalta I also noticed that the hyper or revved up states that I sometimes got into, smoothed out and I was much more comfortable. So far these responses have remained stable. It has been a good medication for me. Hope your doctor can help figure out what is happening for you and find a good resolution. Wish you the best.

I also have dry mouth, and drinking only relieves it for a couple of minutes. But I also know that it is a side effect of several of the meds I am taking and suspect that is what is going on. At least it reminds me to keep drinking.

I get buffered salt tablets, Thermotabs, from CVS (you can also get them on the internet) and they seem easier on the tummy.

I live near the navy base where the Blue Angels aerobatic flight team is based. They do NOT use G-suits but rely on ab exercises to prevent fainting. Our local support group is hoping to get someone from the navy to teach us the exercises. Apparently they are short-effective, to give you a few minutes to offset a faint. If we learn anything, I'll keep you posted.

Hi Lisa and others, I too have a hard time when they are trying to take blood or put an IV in. One IV nurse always put heating pads around my arms for a while before trying and also had me in a recliner. This helped a lot. Another had me hold my hand under hot water so she could get a vein in the hand. I also have tried a bit of weight lifting with very light weights before they try and this has also helped. I have sometimes requested an N.I.C.U. nurse too, if one was available. The absolute worst is when they want to take blood in the a.m. with you fasting and not drinking from midnight!

Some of my medications for dys have helped with the fibro a great deal. Specifically, I am taking strattera to stabilize BP etc., and found that my fibro pain was reduced by half--probably from increased circulation? My dys doctor also gave me low-dose cymbalta and this has further helped. I can now do things that I haven't been able to do for years--what a relief! In fact yoga has become much more possible with these meds.

There is a petition circulating to reform social security disability laws to include people like us. It would also allow for people to be granted a type of disability that would allow them to work in periods when they are doing well. It was started by MS patients. Am I allowed to post a link here?

It's getting time to get serious about buying a cooling vest--I live in Florida! A couple of questions for those who have one now: Does the weight/bulk of the Cool Vest brand bother you, for instance for going for a walk or riding a bike? Does it have cool packs in back as well as front? And, has anyone tried the Artic Heat brand? They weigh about half as much, but I'd love to find someone who has tried one cause these are fairly expensive items. And anyone else who has another brand, would be great to see how you like it--pros and cons. Thanks.

And here is another idea--if you have a tight girdle, wear that. I lot of the pooling that causes us problems is in the abdomen so my doctor recommends girdles--ugh! But they do help.

I'm on bio-identical estrogen and progesterone from a compounding pharmacy. Of the 3 main types of estrogen they use only 2 (biest). It is the 3rd type that has been associated with breast cancer. I feel very good on the dosages I'm on. (had a saliva test to check the levels)

Has anyone else used Petadolex? It is a purified form of the herb butterbur, available from Enzamatic Therapy on the web and at health food stores. I had very frequent migraines and they have stopped completely. You take it every day as a preventative. It is very important that it be the purified form of butterbur as the herb itself has a toxic element. Enzamatic Therapy licenses it from a German company. It is supposed to be as effective as imatrex, which I couldn't tolerate. It has certainly worked for me, without any side-effects.

Just heard yesterday that the carbonated drinks are actually dehydrating. Also the aspartame is getting a really bad rep these days and many of the sodas make bone loss worse. Sigh! Have you ever tried saline IV's? Some people have them when they are having a hard spell and they seem to help them.

Lavender, I take low doses of klonopin (.25mg) and phenobarbitol (8mg) and no, I don't feel groggy the next day. I started with 16 mg of pheno and that did hang me over a bit, so the doctor cut it in half. But I am sensitive to meds and usually take lower doses than others. It is an enormous relief to know that when I go to bed I will sleep! Earlier the doctor tried me on a really low dose (.5 mg) of clonidine at night but that made me exceptionally tired the next day--it does work for some though, as does ativan. Yesterday at our support group the doctor was explaining how the sympathetic system starts its wake up call (slowly) at about 3 am and that really made sense for those of us who habitually wake up about then and have trouble going back to sleep. Thank goodness, now I go back to sleep when I wake up.

This is the story of my life! The only thing that I've found that helps is taking meds that will cool down the sympathetic revving. For me it is phenobarbital and klonopin at bedtime, with a small dose of ambien as back up if those don't work. I really know how you feel, and it is so easy to cross the invisible line into overdoing and fatigue.

Some people I know request a wheelchair or use a cane seat when standing in line. Standing in line is definitely a problem. As far as the flying itself, I don't have that experience except I do carry packets of electrolytes and put them in my water bottle, a couple for each trip. This probably helps retain fluid. Hope you have a great weekend.

I get the same over stimulation and chest pain after exercise. A small dose of a benzodiazapam before largely prevents it or helps with getting over it if I don't take it before. I used to take a quarter of a 5mg valium but it made me a little groggy so my doctor gave me klonopin--tiny dose, and it works without the grogginess. It made sense to him but I don't know the theory behind it. I've read that benzodiazapams help with neurally mediated dys.

I called the compounding pharmacy I use for hormones and they said they would check and call back, but they haven't called yet and won't open again till Monday. They are Signature Pharmacy in Orlando (they mail) 888-323-7788. Good luck.

I have a reaction like that, though not as intense. For me I think that cardio workouts hype up the sympathetic system and it just can't turn off. I have had pretty good results taking meds that calm it down, or taking them before the workout and preventing it. But slowly increasing the time seems to be the way to go--very slowly!

Any possibility that you could have a problem with systemic candida? Vinegar would aggravate that and garlic helps get rid of it but can also bring on "die off" symptoms which make you feel awful. Any other condition like a candida problem can make the dysautonomia symptoms worse.

There is also a new one: www.supportdysautonomia.org

I probably also have one of the less serious forms of EDS (hypermobile joints, MVP, get subluxations from most anything) but wonder what difference, if any it would make to a treatment plan? I haven't explored getting tested because I don't think there are treatments. I had prolotherapy for my knees and that did help, but it is an indirect treatment (tightening the ligaments). Anyone one know if an official diagnosis makes a treatment difference?

I believe that B12 is one of the harder ones to absorb from pills. They say that the sublinguals are better. I used to give myself shots and did notice the difference--less fatigue.