Wmtate

Bump! Hope you are doing better

I think you have something else. I have been going to Vanderbilt for years. I volunteered in 1994 and stayed for 9 days in the hospital and volunteered again 2010 and again last week for two research projects. You may have a simple fix, and I hope so for your sake. Their research is deep regarding this disease.

I guess the drug from Japan is Droxidopa or also know as Northera. I would like to know how you got it. This drug was approved 2/14/14 and should be available in Sept. I would like to get 4 or 5 pills just to see if it works. I would pay double or triple to to know early. I have had PAF for at least 30 or 40 yrs. I manage and not near as bad as you are, but I am not happy with my conditions.

They treated me like a king

Rachel, I think that will be my last time. I volunteered in 1994 and stayed 9 days, again in 2010 and stayed 5 or 6 days. I think I was the fourth to test for the MRI chemical levels and the thermal test and they need 10 to get a good level. They cannot use anyone on anti depressants and 80% of people who have some of our troubles are on such drugs. Once they establish levels, then they can use the MRI to DX. Will not be a maybe but for sure DX.

Have not heard anything yet but not sure if what I did was nothing but a base line for test in the future. Other words establishing a base line

The thermal test today , which I thought was a heating pad on my stomach and take blood pressures was most extensive test I have ever done. Three hours and twenty minutes. I, for some reason mis understood the MRI test. It is not for metals. It is to read the chemicals that control b/p and heart rate. They think mine is external damage but wants to just check me to see if it is actually in the brain. In the future an MRI will DX future patients they think with autonomic problems. If it is in the brain, I did not ask them if it could be fixed. I always thought it was in my brain, we shall find out tomorrow

They took blood, EKG, temperature, and during the night b/p check every two hours, and collected all urine last night. I got up 15 times to urinate. Volume range was from 40 to 90 cc per trip. I do not know why I went so many times. I normally go 2 to 3 times a night. My systolic b/p ranged from 130 to 180 thru the night. They did install a patch with a med or placebo. At 11:00 am today I will do the first thermal test, to check if my supine B/P will drop by heating my mid section with a heating pad. The second test will be tomorrow plus the MRI brain scan for metal in a certain spot in the brain. I lost 2 lbs during the night from going to pee too many times and dizzy while standing this morning. Will give you other data as I go forward

I arrived at Vanderbilt about two hours ago and" thermal" supine b/p test starts tomorrow (6-26-14) and also 6/27/14. The MRI for the particular spot in the brain to test for metal will be early Friday morning. I almost hope they do find metal. I guess it can be removed by chelation. Don't know for sure what the plan would be if they find metal. They must know something to even be testing me for metal. We shall see!!

I just have plain and simple PAF and nothing more. I think they are simply taking people with our problem just to check it out. Maybe they have been doing autopsy research and found metal in some of the corpse in a particular part of the brain. I do not know and it only takes 1.5 hrs. I do not know even if they will let me know or what it indicates.

I was asked if I would do a thermal test in supine position to see if it will lower my b/p and also will do a MRI of a particular spot in the brain to see if I have metal in that area of my brain. Interesting research

In December I will be 75 years old and haven't missed a day work since my early 20's except a virus or so. I have both high b/p and L/ p. as low as 56/39 standing to 230/115 sitting. I have been DX over 30 yrs at Vanderbilt, but I have had it over 40 or 50 years. I do have a desk job. I have focused on my work rather than the disease. I figured I would waste a lot of life thinking about the disease rather than looking forward and it has worked for me. I have mostly tried to do without meds but I today have to take one Midodrine a day. I am waiting on Labor Day for the drug Droxidopa to be available . It is quite amazing how the body can compensate without meds but it is not an easy road. I do work out with weights, which is vary hard to do, due to short of energy . I have PAF and I do not believe it varies that much from POTS. Will

I do sometimes have very low grade fevers (37.0-37,5 which would be 98-99 F) when I have a cold.

In some cases I feel like having the flu, but don't have any fever. This is more likely the "POTS-flu", I guess.

Btw: I was dxd with POTS and told this excludes PAF (and the other way round). You were dxd with both conditions...?

No! I just have PAF

Try Sigaris website. I use the 20-30 mmhg. I use the waist. I found the knee length was painful. You should find a method sizing chart you can use on the website. I order these through Amazon.

My autonomic doctor told me about 20 years ago I would never run a fever and I could be very sick and not know it. Yesterday I had a fever of 101 F . I have cold or something like bronchitis so my PC doctor says. I have PAF which is still in the field of POTS. Do any of you ever run a fever?

Check it with your physician. The one I take is called Dops and I get it from Japan. But it is expensive! almost 400 dollars... Good Luck!

. Your forum name is Dops and the medicine is called Dops , very interesting. I believe you would have to get a doctor from Japan to write the RX and I do not believe a doctor in Japan is going to write RX not knowing you. How did you get it done? Do you live in the US?

I called Chelsea Labs regarding when this drug will be distributed in the US market . I received a call back from them and it will be the second half of the year. Much too long. I wanted to book a European River boat cruise for 15 days the last of July but I am concerned about my low b/p. I need this drug really bad now. Any ideas!! Japan has been selling this drug for 20 years. Since it is now approved for the US, seems if I had a contact in Japan I could get the drug and it would be legal. I might need a doctor in Japan to write RX and I do not think that is going to happen. Any ideas???

Thank you very much!!!! I did not know it was a live virus. Someone asked why I would want to take the vaccine. Apparently you have never had the shingles or you would not ask. It is the most pain I have ever had. I will not take it

Since my autonomic problem is or best we know is caused by autoimmune system. So, has anyone had this vaccine? I do not know if I should take the vaccine or not. I would not want my problem get any worse. I do get the flu vaccine every year. What do you think?

This drug was approved 2/14/14 also know as Droxidopa

Drops, your writing is ok. I know what you mean regarding staying on the move. If I slow down, my b/p drops considerably. I did not realize you lived in Sweden, but northera has not been approved in Sweden, as far as I know, only Asia countries have been approved and has been over 20years. I wished I could get about 3 or 4 just to see how it works. It will be around Sept 1 st 2014 before they get distribution set up in the US.

HI,

Yes, me. I use Droxidopa (Dops) which is the same as Northera I think. I got a new life with this drug. I have no sideeffects of it.

. I would pay twice the cost if I could get this drug now. How are you getting it. This drug is targeted for OI and Fibro

I must be missing something regarding this drug. This seems maybe the magic bullet to me

Something that helps me,it is like priming a pump! Before getting in shower, I lay down on bed with feet up for 2 mins and then walk a few steps. I do that about four or five times and the more I seem to do it, the more my pressure seems to build up. I then can get in shower

I am waiting patiently for its release in the US. I called Chelsea Labs in North Carolina and they said it would take until about Labor Day to get on the market. FDA approved it on Feb 14 th. This drug is also know as Droxidopa and has been used in Asian countries for over 20 years. It will also be used for Fibromyalgia , but was approved for OI. My bp can get as low as 56/39 and I have passed out once. I wish I could figure out about getting it from another country if it would be legal.