Ernie

Hi Friday,

What I have read but I don't remember where is that there is a micro sleep study done at home. You are not hooked to all the sophisticated equipment but only one piece of equipment. If they find something interesting in that test then they send you for the complete sleep study.

Ernie

Hi JLB,

I reallyappreciate your perspective on hypervigelance. It never occured to me that it made us also more perceptive of others and more compassionate. This makes sense.

Ernie

Congradulation on your acquisition. What a relief! At least now you have some coverage.

Ernie

Congradulation on getting on the emergency list. You have a good dad.

Ernie

Thank you very much for giving me your advice. I have not made my mind about the meds because I know my sleep is much different with the beta blocker. I guess the consequences of taking the medication are not as bad for a sleep study because if I do have sleep apnea it's the CCAP machine. Not always easy to make decisions!

Ernie

I would ask my doctor for a TTT.

Ernie

Mine are the highest ever seen.

Ernie

Hi,

I am sorry you have so long to wait before you get the tests done. I had the same problem in my country. It took 2 years before I got the TTT and I was bedridden for the whole time. What helped me pull through was the hope that when I get tested I will know what I have and get the proper medication.

I was telling doctors that I faint everytime I stand and they could not care less. It was very frustrating. Another thing that helped me is that I have a friend who took care of me and my family was backing me up.

Now I have a diagnosis and medication that work so I am functional at home but I still cannot work.

I think your father has a good idea to put you on a waiting list for any cancellation.

Have you tried any medication so far? Do you think it is possible that your PCP tries you with the most logical choice of medication for POTS (according to your symtoms) while you wait for the tests?

Have you tried high salt, drinking more water and compression socks?

Ernie

Ernie

Hi Nina,

I am sorry you are having such terri ld pain. I hope that doctors will find what you have.

Ernie

Hi Merrill,

Thanks for the reply. I had already read all the posts on sleep study. My concern is not with what will happen during the night but I want to be sure to have a proper study. I am used to have to stop my meds whenever I have a test so I am surprised that I don't have to stop my meds for this one. Since I have a rare disorder maybe the sleep study docs are not familiar with dysautonomic issues.

Ernie

I just got an appointment for a sleep study in November. The doctor said I don't need to stop my medication (Propranolol, Proamatine) but I wonder if the results will be accurate if I do the study without stopping them? Did you stop your meds when you did the study?

Ernie

Hi Morgan,

You are notting close to a winnie. I admire your strenght and courage to manage all the health issues you have. You are also very generous of yourself in helping others.

I have to go to PT also because of the injuries I sustain in my faintings. Most of the time it is my knees and my lower back which are taking the impact.

Ernie

Hi Julia,

I am really glad you found a good doctor. You seem to be under good care.

Ernie

Hi Susan,

Your vitals are similar to mine when I faint and the doctors tell me I am pretending to faint. The doctors believe this because we have no drop in BP during the episode. In your case and mine what they have to look at is the HR which is sky high. Dr Grubb explained to me that I don't pretent fainting and that it is real syncope. He said that our body can maintain a constant BP but we faint because of the blood pooling in the legs. After a few minutes we don't have enough blood to the brain and we pass out. When you have a high BP at recovery this shows that your body is readjusting from the faint. If it was all in your mind your heart would not go to 190 before fainting and your BP would not increase after syncope when laid flat.

Have you had your catecholamines (adrenaline, norepinephrine, dopamine)measured? That could help you prove that it is not in your head. This is the test that proves I have organic reason to faint. Really important document when I meet a new doctor or go to the ER.

Dr G told me that we are hard cases to diagnose because on top of not teaching dysautonomia in med school they don't teach that it is possible to faint with a high HR and constant BP. Even regular cardiologist are not aware of that.

If your HR is 120-130 you have tachycardia.

Believe my experience, it is not in your mind. You are really fainting.

Ernie

Hi Susan,

I had the same situation happened to me not long ago. I had to see the EP to confirm that it is not in my head.

What were your HR and BP supine before TTT and at syncope.

When the doctor said your HR and BP where normal when you passed out, do you know the numbers?

Ernie

I am sorry that the doctor mistreated you. It is difficult to find competent doctors when we have a rare disorder. As others have mentioned, doctors tend to give us psychiatric diagnosis when they don't know what we have. Many of them have such big egos.

I am slowly learning not to hate this "species". I know all the apples are not rotten but there are surely a lot of them.

Good luck finding a new doctor.

Ernie

Hi Julia,

I am sorry that you did not get all the answers you expected. I understand how hard it is to suffer and not know why and how and what to do to relieve our suffering.

On the + side you got confirmed by Dr Grubb that you have EDS. Remember how worried you were about bringing this topic. You made it!

I don't know about traction but I know about massage. When we receive a massage it is normal to have some pain after (from 1-5 days). But after 5 days if the pain does not go away there is a problem.

Just be careful not to aggravate your neck.

Ernie

Hi Nina,

Sorry you had such bad reaction to the medication. Sometime it is so difficult to figure out what we can take or not. It is like the Russion Roulette. I hope you get better soon from your infection and the med reaction.

Ernie

Thanks

Very very intesting article.

Ernie

Hi Opus,

I feel for you. It must be difficult to get home and see all the devastation. You are very courageous.

I will continue praying for you and for the others .

Ernie

Hi,

It's so nice of you all to encourage me to continue my quest for answers and a better treatment.

I am starting to realise more and more that I probably have another problem besides POTS and NCS. I have checked with some members of my family who faint and they don't all have muscle weakness (some do). Some members have muscle weakness with no POTS and NCS symptoms. I am the only one in my extended family who paralyse. Dr Goldstein told me that I was his only patient with paralysis and in Canada I am also the only one (with POTS and NCS).

The specialist I saw the other day told me I am a very interesting case (this means I have a rare problem)! He seems to be scientifically interested in me. I can't wait to get tested and hopefully get better. I find it hard (sometimes/or often) emotionaly to be "rare". It's difficult to get answers and treatment, etc..

Thank you so much for your support.

Ernie

Hi Sue,

Thanks for updating us on your progress with your doctor. I am proud of you for standing up and getting your specialist to realise that you do have a problem and you need further testing. I know how challenging this can be!

Good luck with getting your diagnosis.

Ernie

Welcome to the board

Ernie

Hi,

Thank you all so much for your support. I have read and re-read your answers. I appreciate your advice and kindness. You are giving me the courage to continue fighting and searching for answers and improve my quality of life. You made me realise that my self-esteem was poor. I think that part of the reason I feel worthless is because I cannot work anymore (and be useful to society).

I am waiting for get a call from the hospital to schedule my testing. I don't know when they will call but the doctor said that the test would be in October or November. I am anxiously hanging around the phone waiting for this phone call. When I was "healthy" I never thought that one day I would be excited about going to the hospital for some tests. My life turns around doctors!

Thanks for being there for me.

Ernie

Hi Jessica,

I am proud of you. It's another step to get your life back. Ethan will learn new things and make friends. I am sure that as the days go by you will slowly find it less difficult.

Ernie