WinterSown

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.

1 minute ago, Ekim.pee said:

I bought a pair of 'skins' a few weeks back - a size smaller than I would normally wear. These seem to be helping as compression stockings. They are easy to put on and are relatively comfortable.

Thanks for the advise about milk, I'm going to try it.

 

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.

1 hour ago, Pistol said:

@WinterSown - thanks for the lesson. I will try to use this but I challenge you - I bet it won't happen unless I let hubby do it. I can always blame it on brain fog!

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

1 hour ago, corina said:

Edited to add: sorry this is a 2014 article on SFN in POTS, I think not the article you mentioned?

 

Here's the abstract, you can read the full-text of this article per request from the authors on ResearchGate using a link.

https://www.researchgate.net/publication/260947728_Small-fiber_neuropathy_with_cardiac_denervation_in_postural_tachycardia_syndrome

 

 

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

11 hours ago, Pistol said:

@WinterSown I am truly sorry but I have no clue how to paste a link. Do you know how I can find help with that? 

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?

1 hour ago, zerohours000 said:

I have no clue.  When I raise the issue of anything he keeps saying “the etiology doesn’t match.”  And they’ve done just basic blood work.  What do you suggest?  

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

14 hours ago, CK1 said:

Thank you. 

Strangely they told me I could all my meds including Beta Blockers , but I am not going to take them as they purposely bring down your heart rate so what's the point IMO. 

 

Thanks

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.

6 hours ago, Brokenlittleteapot said:

Found out that I need a full time walker or wheelchair. I am 24 and can't even make it across the room, two and a half months ago I was walking fine. This is so hard and frustrating, I want to cry but I'm not gonna let this illness win.

A doctor told you to go to a walker or chair full time?I am so sorry to hear this.  Did they also prescribe physical therapy for overall strengthening? I can't imagine one without the other.

These numbers are typical of what many of us experience, kinda my norms. I'd rather eat right, exercise, drink water and fight tooth and claw to get better.

1 minute ago, blizzard2014 said:

Maybe that is a good thing since all of this hype about chronic pain is causing so many doctors to shy away from prescribing Benzo's. I personally don't want anything to do with dependence on Benzo's, but I would take tham occasionally if they helped some. There are some patients on my FB group who were recently displaced from their good doc and new doc's are taking away all of their Xanax to the point of some of them having seizures from withdrawing too abruptly. It's not a class of med you want to mess around with. 

It's a controlled substance. When I first prescribed them, along with a prescription for Vestibular PT, I was taking them three or four times a day. Now I'm down to a half pill two or three times a week.  The DPT did an awesome job at correcting most of the vertigo and so I now rarely take them for that anymore but I still keep a full bottle in the cabinet for tremors which I get with blood pooling into my limbs at ludicrous speed, my arms are so patchy with raised veins I look like I've gone to plaid :-)

I wish they had that effect on me, that they would help regulate my BP,  but so far it's a no.

Effect of Diazepam on 24-Hour Blood Pressure and Heart Rate in Healthy Young Volunteers.

Diazepam reduces both arterial blood pressure and muscle sympathetic nerve activity in human.