nantynannie

Hello,

I am not sure if this would apply to you, but when I exercise it is hard for me to get my heartrate to exercise zone, it is usually lower during exercise than throughout the rest of the day. If I am moving at a decent pace, but not too fast, I feel much better than when standing or moving slowly about the house.

Anyway, my cardiologist says that when you are exercising or moving quickly enough, the leg muscles are pumping the blood more efficiently back to the heart and brain. When standing or moving slowly like shopping, the blood is just pooling.

So that is why MY heart rate is in the "normal" range while exercising, but not normal when doing anything else. Could that be what's going on with you?

I know that exercise can be exhausting, but I have definately found it to be worth it. I do much better when I exercise (walk) regularly. Hope this helps...

Ann

Hi Ernie,

I hesitated to post because I don't want you to worry, but then again, you should be prepared, so here is my experience with these pension doctors in the USA. I had to go to four of them, none on "my side." They all made me feel like I was trying to milk the system.

They were all supposed to read my medical file before the appointment, but my file was so thick, none of them bothered to read it and none of them were familiar with my condition in the least. The cardiologist I saw assured me he would research the condition before he issued his report. At one point he said, "So are you telling me that if you were to stand up right here, these things would happen?" I said yes and did he want me to demonstrate. He blew it off and moved on to something else. His final report said I had sinus tachycardia 100+ while laying down, but that there was nothing wrong with me. He dismissed the tilt table test, catecholamine test, blood volume test, etc. because he had no clue how it all went together and he couldn't care less that I was diagnosed by one of his collegues.

Take all of your most relevant doctor reports (opinions) and positive tests. If you take too much, or they already have too much, they might not want to bother reading it. If you have a strong opinion in writing from another doctor, make sure you point that out to him. This may or may not help. The docs I saw said, "Well who told you that?" And they dismissed my doctors as if they were quacks or they were getting paid to give a false diagnosis.

Do not assume anything. Don't assume they are familiar with your condidition. Most of the docs I saw thought I was crazy, even with 2 1/2 feet of medical reports. I printed out a bunch of stuff from this website and then put it together with my testing. Do not assume after you are done talking that they understand anything you said. I had one doc tell me not to worry because he studied autonomic disfunction at such and such hospital. I walked out of there thinking "Thank goodnes, he understands!" Wrong. His report said there was nothing wrong with me.

Do not go light on your symptoms or restrictions. Make a list and tell them everything you cannot do anymore. think about the things most people take for granted like driving, going to the grocery store, standing in line to get your prescriptions, etc., don't stop because you think he has heard enough or already knows about your condition.

If they ask you if you would like to go back to work, tell them you would love to if you could find someone to fix you and ask him if he knows anyone. Think about what it would take to go back to work and how your symptoms would prevent that. One of the docs asked me "So why can't you go to work?" and "So, if you were to go to work tomorrow, what would you be able to do?" Think about your job and other available jobs in the same industry. Think about your job description and duties and think about why you cannot be productive in those jobs. Most of us know we cannot work full time, but are unable to articulate it to somone who is not sick. Tired and fatigue does not cut it.

Have a list of all of your medications, who prescribed them and why. It did not help me that I had stopped most of my medications at around the time I saw these docs. For some reason, meds make you legit.

Before you leave, it might be a good idea to stand up and let the chips fall where they may. Then you will leave there confident he knows and understands why you can't go to work.

The good news, is I got a pension, but that was mostly because my adjuster understood my medical condition with or without the doctors he sent me to.

What kind of doctor are you meeting with? I am not sure how it works where you live, but most of the doctors here have no clue about autonomic problems.

I hope everything goes well. I am sorry if this sounds so negative. From what I've read about your experiences, there is not a snowball's chance you could go back to work, but getting it across to the nimrods can be frustrating. Good luck!

Ann

Hi All,

I was wondering what the migraine suffers who also have POTS do to relieve symptoms. I am looking for the best remedies and treatment/meds for the POTS people. My sister has terrible migraines and I'm pretty sure she has POTS also. Nothing seems to be working for her. I know that vasodialtation/constriction plays a part in migraines and POTS, but are the mechanisms the opposite of one another?

Thank you!

I have the same thing without the coughing. Massive heat coming from the inside. My doc says it is ANS related. It is especially bad if it is cold outside. If I walk from the house to the car in cold weather, I have to turn the airconditioning on high and take off my jacket or not wear one at all. It is also bad going from the outside cold to inside a store or whatever, but it can happen any time and under different circumstances. I also have the same burning/red issues with the hands and feet that were mentioned in another post. I don't know what the solution might be and I don't know about the coughing...sorry!

I love this board because it is comforting to know others have the same wieird symptoms. Does anyone else yawn alot on bad days?

Ann

Hi there,

I take 300 mg of Welbuterin (sp?) in the morning so it won't interfere with sleep. I find it to be quite helpful. I tried many others that did not work out, and this one has no weight gain. Good luck!

Ann

Hi,

I was just wondering if anyone has been diagnosed (or found to have on examination) anisocoria (diameter of pupils not equal)?

If it is an ongoing symptom and not something that happens once an a while (ie. normal), if can be a sign of many things, including neuropathy. I am now realizing that I had this at the last drs. visit and probably have it most if not all of the time. It probably explains some of my weird eye issues...

So, was just curious if other people have had their drs notice this and order further tests on it? I think I am scheduled for one test in regards to this, but don't know a ton about this to what it all may mean or how treatment etc. may differ because of it? Any experience?

Thanks!!!

Hi there,

Yes, I have this. Sometimes it is very obvious to others and sometimes it goes away. My doctor has seen it. I think it is an autonomic issue. Hope everything works out for you!

Ann

Hi Everyone,

I saw a post about these shoes under a different topic, so I wanted to create a seperate topic so it is more noticeable. Has anyone tried these shoes? I know for me, higher heels help me stand longer by contracting the calf muscles. It helps to rock back and forth heel to toe, which also contracts the muscles so I am now wondering about these shoes. I would like to get some feedback because they are VERY EXPENSIVE! But worth it if they work.

Thanks!

Ann

I have a question for those of you familiar with this MCAD...is it possible to be highly allergic to something one day and not the next?

Thank you!

Hey All,

I am curious...what do each of us consider "well functioning"? Can anyone stand for more than a few minutes without moving or pumping your legs?

Persephone,

CONGRATULATIONS!!!!! Is it possible for you to explain further about this treatment? Thank you!

Ann

It's a double-edged sword, but exercise can help. I've started cardiac rehab, and if done in a slow, progressively adding-more-over-time manner, it has helped. Not sure of the mechanism. At the time, I think it helps with blood return. I think it might also help your body to produce or process its own constricting hormones/neurotransmittters better. But, it can make things worse, if overdone, or if you don't listen to your body. Right now walking is okay for me. But biking is not, because all the blood pools in my legs, even though I'm seated, so you have to find what works. I know a lot of people like water, because it reduces the effect of gravity. I'm hardly cured, but doing much better than I was over the summer. The only difference is that I slightly increased florinef (.05-.075), and started cardiac rehab.

I also have one pair of super-duper compression stockins--40-50 that help on really bad days. They're just a bear to put on, uncomfortable, and when I take them off at night, instant crash!

You are so right about the exercise. As exhausting as it is, it's worth it. My neuro says the legs have to be kept in good shape, as much muscle as possible to help with blood return. I know if I am standing, I flex my calf muscles to give me a few more minutes.

I am definately going to get the compression hose out again. It has been soooo hot here in California. I need to check and see how heavy they are, I think 30, but not sure. I am going to use them now...Thanks!

Thank you for all of the suggestions. I am wondering what the best way is to take licorice? How many mgs and what form, powder, pills, etc.? Thank you!!!

Ann

Hi,

I used homeopathy before I became disbled. Now they are not strong enough.

What homeopathy did you use? Thank you.

Ann-

Some people have had some luck with natural black licorice. But check with your Dr.

Sara

Thank you Sara, i will check into this...

Hi All,

Does anyone have any ideas for "natural" remedies to help with POTS? I have tried many of the prescription medications to no avail and prefer not to be on drugs anyway. I am looking for herbs and stuff, or anything else that might work such as compression hose, salt, etc. Thank you!

Ann

Thank you for all of the answers!!! I definately wasn't thinking clearly on this one, just reaching I guess. When I had my TTT, the cardio wanted to discuss ablation, which I refused of course...but I came across an article about pacemakers and I wrongly assumed pacemakers regulate the heart rate no matter what it is (low or high). Obviously, I wasn't considering the fact that if our heart rates didn't compensate for the BP, blood pooling, etc., then we would all be on the floor! Just wishful thinking I guess.

pacers only help bradycardia...slow HR

But if it's low BP and tachycardia not a help.

Thank you for answering. I thought a pacemaker helped both brady and tachy. I saw another post for some new pacemaker...does that one help? Thanks!

Hi Everyone,

I was wondering if anyone had a pacemaker and if it was effective? I am thinking not, but just looking for anything that might work.

Thank you,

Ann

Hey All,

I have not posted on this board in a few years, but after reading just a few topics today I am still amazed at how many of the same symptoms we all have, yet the doctors remain clueless. The allergy feeling (like the flu), pain in the legs, night sweats, sleepy after eating, no temp regulation, etc. It is so nice to read this board and see I'm not alone even though most docs remain ignorant of this condition.

Thank you!

Hi Willows and Everyone,

I am also on Oxycodone ER 40mgs twice a day. It is just enough to make things bearable most of the time. I think it is more than coincidence that so many of us have this pain. Many docs tried to RX me with Fibro until they found the Vasculitis. Maybe it has to do with the circulation and blood pooling related to POTS. I guess the vasculitis that I have is an inflammation of the small blood vessles and capilaries. I wonder how many of us have the Fibro or CFS RX? I think this question has been asked many times in the past.

It is so strange to have gone for so long with about 25 CRAZY, seamingly unrelated symptoms like POTS, tonic pupils, and flushing, you name it, none of the docs could figure it out except to tell me that I was crazy or depressed. Now, when I read these posts it is like reading the story of my life. I wish Dysautonomia was a more recognized illness, but I thank God I finally found a doctor who does not think I am crazy. This is what I wish for all of you. Meanwhile, it is comforting to know through this website that none of us are alone in this.

Ann

Hi All,

I usually don't post, but after reading this topic I have a question...I have terrrible aching leg and sometimes arm and full body pain every day. Before I started on pain meds I seriously considered that I did not want to live through the pain any longer. As I've previously mentioned my doc finally diagnosed vasculitis which some of you sound like you might have especially those with the red spots and Reynaud's. My question though is, are any of you on pain medication? I know I fought medication of any kind to the bitter end, but at some point, the pain won out. It does not by any means take the pain away but makes it more tolerable. I'm just wondering if I'm the only one. Thanks.

Ann

Hi Linda,

Sorry it took so long to reply. I get a rash sometimes, but mostly just very painful aching in my legs and sometimes my arms. I guess a build up of immune complexes in the blood can cause the veins and capilaries to become clogged or swell and it causes heat, flushing, and pain. My tests for Lupus and those types of diseases are negative. Hope this helps.

Ann

Hi Linda,

Did your doctor test you for (excess) immune complexes in your blood? It can cause a lot of aching pain and is a type of vasculitis. I have it and it took the docs a long time to find it. What is EE?

Ann

Hi, everyone. I was just to my family doctor today. She's a very

wise intern-est, luckily for me. She's referring me to Children's

Hospital in Cincinnati for my EE. Luckily again for me, their

eosinophilic disorders unit takes adults.

Anyway, while there, she and I got to talking about my experience

with trying to get my EE diagnosed, and she stated some confusions.

I wonder if any of you can help? I hope so.

I was tested for Churg -Strauss and vasculitis while in the hospital

here in Lima, and then in Cleveland. I have a lot of the symptoms of

these diseases, especially with my gastric problems. I had the ANCA blood

tests done, which showed negative for any form of vasculitis and

even some diseases, like lupus. I had a clear chest x-ray, a clear

MRI of my brain, normal seds rate, normal CRP, normal everything

blood but my eosinophils, which were 8.1, and IgE level, which was

1228. Docs are attributing those to my EE.

At CCF, the rheumatologists said I just don't appear like a

vasculitis patient. They said my rashes would last longer, like

days instead of hours, like I get them. And, I guess I would be a

lot sicker. I don't really know what they meant by my physical

presentation doesn't warrant vasculitis, but they said I definitely

don't have it.

Yet, when I have flare ups of my EE, my arms and legs hurt and may

even tingle and feel a little numb. I also experience purple feet

when they get cold and I dangle them on the floor over the side of a

bed. The tips of my hands may turn purple, too. Raynaud's doesn't

turn your whole foot blue, like mine does, is what I was told today.

I also have some other symptoms of vasculitis, like pain in my

muscles, blurred vision, weight loss (which I know can come from

EE), burning pains, etc.

What do you all think? I noticed that many of you have undergone

tests for vasculitis. Do you think my work up is good? I've had

numerous doctors tell me I don't have vasculitis (CSS or any kind),

based on presentation and tests, yet I still can't shake it. Am I

being obstinate?

Oh, I do have fibromyalgia along with my Postural Orthostatic Tachycardia

Syndrome, as well.

Thanks, everyone.

LInda

Can someone please tell me the difference between a regular EMG and a small fiber EMG? Is a small fiber included in a regular? Thank you!

Ann

Hi Roselover,

Thanks for the information on your visit. I was wondering if you could tell me more about your bladder/urinary problems and any possible solutions or things/medications you have tried. I am going to a nephrologist tomorrow, but I am pretty sure my problems are related to the dysautonomia. Thank you.

Ann