WinterSown

I totally agree on reglan; made me drool and my tongue shake, BADDRUG!. While in the hospital for nausea thirty years ago injections of compazine gave me lockjaw. 😞 Not fun. 😞 Obviously, none of us are diagnosticians, but we have similar problems and make some suggestions like looking at a basic GERD diet which is just some simple wise changes that might help you until you get to the doctor. I hope you feel better soon.

Any doctors that listen are worth their weight in gold.

I got a great tip from my cardiologist. For an energizing pick-me-up I scrub my face with damp hands coated with epsom salts. It also is a great exfoliating facial--beauty tips from my cardiologist; I have a keeper. WOOT! Both the scrub and the soak are much better ways to introduce magnesium than something like Magnesium Oil, which isn't even an oil but a spritzer with water that has some magnesium in it. It's practically worthless as a product because it has such very low concentration of magnesium and a spritz evaporates quick unlike a bath which gives you more coverage for a longer time. But, skin is a shield and is not meant to absorb as well as your intestines and gut. The very best way to take in more magnesium is by eating it. There are many foods rich in magnesium which are also quite yummy--you may already love some of them.

For now, you can cut back on high fat foods and eat smaller meals until you can see your primary. I think you are describing GERD. I have a script for Omeprazole but you can also buy it over the counter. It works. https://www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940

You can talk to your primary about seeing a nutritionist to help you create a meal plan that is more comfortable for someone with dysautonomia. If you have more consistently sized meals you will be less likely to stress your system. The nutritionist can also talk to you about how to best maintain your balance of fluids and electrolytes through nutrition and smart eating.

My primary sent me to the cardiologist who sent me to the EP, and they both sent me to their neuro down the hall. It was really a team effort between the three, they all knew which direction the tests were taking. After my TTT, and I did not faint, the EP asked me what I do to feel better. I said I go lay down. That got me my diagnosis. And other things. Get a different neuro, your guy is not caring. Is it possible you can ask for a recommendation for a neuro from any of the doctors you have that understand your symptoms? That way there is the expectation that their recommended doctor is going to be on board with your current diagnosis.

Hi Kelly, welcome to DINET. I found a website that describes what to expect. This is an arthritis-based site but they have a thorough description of a typical first visit for anyone visiting the rheumatologist--what you need to bring, what will happen, etc. https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/ I am currently going through similar but am seeing a new GI doctor. At our first visit we arranged for her to get copies of all my old tests--not the opinions of the results but the actual tests--so that she can form her own opinion to determine where I am now compared to where I was then. I have a round of testing coming up at the end of July so it's logical to establish some sort of timeline as to progression of that which is better and that which is worse before creating a new maintenance. I wish you good luck at your visit and that it goes as well as it can.

Skins are leggings? I practically live in leggings. Total/Tummy/Energy/Control pantyhose also do a great job at keeping me erect. I learned about them from a waitress decades back when I was a counter girl at the same restaurant. Any type of quality support pantyhose, it seems, will minimize blood pooling in your legs.

I had some blackouts a few weeks back, got some captures of sixties over forties on the cuff at other times; I called the EP and saw him a few days later. We talked about my self care and then talked about the weather, tsk. I did not compensate for spending too much time in the warm sun. It had been a hot day and I went inside as soon as I felt myself overheating but that was too late; I should have gone inside before I got to that point. I have to make a conscious effort to increase my water and salt. He cut another of my drugs in half again to bring up my baseline numbers. I have found drinking a cold tumbler of milk, either animal or plant-based, will make me feel better soon. Milk is loaded with electrolytes and has sodium, potassium, magnesium and calcium; and it's also easily digested food with proteins, fats and sugars. I do better with a glass of milk than anything else for restoring my energy and alertness.

I have been treated for this condition. Your primary can perform a Dix Hallpike Maneuver in their office to determine if you have vertigo. They will know in moments of laying you onto your back. I was prescribed Vestibular PT and it was a tremendous help. The DPT was able to re-position the crystals in my ear to immediately lessen symptoms, I also attend sessions twice a week for balance and inner core strengthening. The vestibular pt was a life changer for me. I couldn't move or turn my head without having a vertigo attack, I rarely am bothered anymore.

I have a 'wonky ANS'; it's probably the best description my EP has given me. You can do things right 100%, even 110% and things will still go wrong. I don't get down about it anymore, I just get back up off the bed and get back into life.

I have early satiety, I just don't eat enough at times because I fill up on very little. I have to eat many times a day or I flare and flare and flare. Being depleted does a major number on my symptoms. They don't tone back down until I get some food into me. A glass of milk usually does the trick as it is a glass of rapidly digestible sugars and electrolytes. If I were lactose intolerant I could drink almond or soy milk for the same nutrients but I've always got 2% here.

I developed symptoms at 57 and was diagnosed at 59. We have chosen not to seek cause because I've had a lifetime of them, instead my doctors treat the symptoms. I exercise everyday, walk about 90 minutes most days, and go to PT twice a week; the combined activity has given me better perfusion and stamina. I do not take supplements (doctor's orders) and get all my nutrients from the food I eat and drink. You might want to look at DINET's Women's Age of Onset Dysautonomia Survey from last summer, the results are an eye opener.

It took me several years to 'teach' Hubs, he could learn but he didn't want to. Sort of a personal goal, but I try not to let him do anything better than me. LOL

I just requested an account, hopefully they'll let me have one.

A link is the URL at the top of a page you are looking at. 1) Move your curser to the URL bar. 2) Right Click. It will highlight the URL, usually turn it blue, and open a small window with choices. 3) Select 'Copy' and click'. When you select copy the URL will be automatically copied. 4) Find a place to insert your comment. Move the curser to that spot. 5) Right click again, it will open the small window. 6) Select 'Paste', then click. The copied URL will be automatically placed into the text field. 7) Pistol, It took me 5, 6, 17, 18 times to get it right the when I learned how to copy and paste, I bet you'll figure it out a lot faster :-) WS

Can you please paste in the link for those of us who are not search savvy?

Take your test results to another doctor for a second opinion.

Welcome to everyone!

I sent you a PM.

My primary sent me to a cardiologist, who sent me to the EP and Neuro. I had a really bad week and called for an appointment, I'm seeing my EP tomorrow. #win

Does anyone use an online service for grocery shopping? Some of them advertise free delivery if, with membership, you order over X amount of dollars. I'm wondering if the spoons saved are worth it. Pros and Cons? WS

Purposely not taking your heart meds before a heart test is not a good idea and will give a false reading--purposely not taking your heart meds at anytime is never a good idea. There's a big myth that you have to faint on the TTT or you don't have dysautonomia. I think less than 40% of dysautonomics faint, I didn't. But I still got diagnosed. Doctors take into account your full history, your behavior during the test, and your reactions. They are looking at reactions based on the expectation that you did take your prescriptions as advised. Please reconsider to take your meds or you can blow the test and/or your management with false readings.

You still have energy to play tennis which is awesome. Have you yet consulted with an orthopedist?

Shouldn't be a problem except that some of the medication for sinus allergies can effect your heart rate. I would call the TTT lab ASAP and ask what meds you can take. They will also let you know that allowable meds won't effect your test. Temperature fluxes are a frequent symptom of dysautonomia. You WANT your doctors to see your symptoms on diagnosis days. Have a mega flare and it's okay. The doctor and assistants take everything into account--current and past.