vemee

I live 2 hours south of Dr. Abdallah and am a patient. As far as I know distance is not a problem, he even has had a patient from Japan. He is a very caring man and is a good listener. He works with the meds to get the most efficient effects from them. I have heard from another doctor that he has worked with Dr. Grubb who is a national leader in pots treatment. I definitely recommend him. I have not had any trouble communicating with him; usually it's done through one of his nurses. I don't think he personally goes to all of the offices but his group uses them. I usually see him at the Reston office where he comes in on Mondays and Fridays, he has a physicians assistant and another doctor that can see you during the week.

Thanks Sophia3, I am really starting to dread this. I am seeing a pots specialist so he should back me up but its the other doctors I worry about.

Thanks Rachel

Has anyone who has been on social security disability for a number of years has their review. I am getting close to the time when they should be contacting me to review my case. I just want to know is the review as hard as getting the award was?

I had the same thing happened to me, the big wig doctor said I didn't have pots because my bp didn't change despite a 50 point rise in hear beats. I wonder if he saw the same guy I did. Dr. Abdallah is a wonderful doctor and I highly recommend him. He is in Northern Virginia and is listed in the physicians list for Virginia.

You need a new doctor, this one hasn't a clue what pots is. He probably just thinks it is just glorified sinus tachycardia. I have been there and have heard that I wasn't sick and that if I didn't like my job to get another one but the doctor wasn't going to risk his reputation by recommending disability for pots. I did get disability and others on the board have too, but I still run into doctors that think it is all made up. I had to go to Cleveland Clinic to get a firm diagnosis, so you might want to go somewhere with a good reputation that knows about pots. They may or may not want to do the paper work for disability but you can give what they find out about you to a doctor who will listen. Also the disability process goes smoother with a lawyer. Find a disability lawyer that gets paid out of the back pay the government owes you.

If your pots is due to pooling of blood then just focusing on the heart rate and bp is doing nothing for you. The heart rate can be lowered and controlled through beta blockers and other meds but slowing the heart rate will only increase pooling. The focus on heart rate often overlooks the underlying cause. I have severe pooling so when I go to the doctor I take my shoes and socks off so the doctor can see my feet turning purplish scarlet. That reminds him that even though my numbers and last tilt table test were fine, I still have a problem which is the cause of my symptoms.

I have the same problem. It may have something to do with high levels of norepinephrine that some of us have. Add to the norepinephrine a shot of adrenalin then it can be like adding a match to gasoline. Changes in levels of norepinephrine and high levels of norepinephrine can cause aggression and violence. Google norepinephrine and aggression and you should come up with some interesting stuff. One good summary of an article written by Sarah Haden usually comes on the first page. Also going on orcoming off of norepinephrine increasing antidepressants can cause aggression in some people due to the falling levels of norepinephrine. I didn't want to say that in the thread about cymbalta because I didn't want to discourage someone who might be helped by it just because I had a real bad personal experience when I was taken of cymbalta and started on clonadine.

The past few months I have had really bad othostatic hypotension when I first get up. This has not been much of a problem for me in the past. I would have ncs and blackouts from standing too long but would not have near syncope with just standing from sitting; at least it didn't happen that much.

I have had pots since I was a teenager even though it wasn't diagnosed until I was in my late 40's. One of my daughters developed pots when she was in 8th grade. I believe it is genetics but like Erika said it could be a combination of genetic and environment. My daughter developed pots the same year mine went severe. No idea what the environmental factor could have been; my thought was Lyme disease but both have been negative on our tests. Of course they will only give us the simple test.

The year pots became disabling for me I had an incident that really shook me up. I was a firefighter and in charge of the engine company one day. The engine had just come back from the shop and whenever it comes back from somewhere the driver is suppose to check the pump. Well I kept thinking that I should remind the driver to do that but every time I stood up to go tell him I forgot what it was I was getting up for, this happened at least 3 times. We got a call for a car fire next to a house and as I jumped into the officer's seat the driver said we had no water in the tank. Fortunately, we had a smaller vehicle that we used for brush fires that we took to put the fire out along with our empty engine so disaster was averted. The only problem was that I couldn't cancel the other responding companies fast enough and one showed up and found out what happened. I didn't get into any official trouble but it ruined what reputation I had. I still forget things when I stand up.

They are nuts and don't know what they are doing. Anyone with just a first aid class knows that you lay a person down and elevate their legs. O2 helps but the blood carrying it has to get to the brain. Sorry you had to go through that.

My daughter actually cleaned her room before she went back to college last week. Your son's room sounds like the usual state of my daughter's room. when she was in high school the only way we could get her to clean her room was to tell her she couldn't do something unless the room is clean. Some times it worked and she cleaned it and other times she would do what your son did. At least that way if she felt good enough to go out then she felt good enough to clean her room. Now that she is in college she is feeling a little more responsible and independent and the situation is improving. I guess it gets better with age. She also sometimes uses pots as an excuse. Other than that I have no further advise we went through the same thing you are going through.

Did they test his urine by chance? I just remembered I had my blood tested several months ago and my glucose was 75 which is normal but I had just eaten 20 minutes before. They found sugar in the urine so that is why my blood glucose was not as high as you would think it would be. I have been told that as well as reactive hypoglycemia I have a mechanism that over reacts to changes in sugar. Sometimes when it starts to rise my body over reacts and dumps sugar into the kidneys and when it falls I believe it shoots adrenalin into the system.

I don't know for sure if that is enough time for reactive hypoglycemia or something else going on with the endocrine system. Anything below 60 is considered hypoglycemic(in my area) and considering he had eaten just 35 minutes prior (which is plenty of time for the food to get into his system) it is really low. Your doctor probably didn't think anything of it because it is not that far out of the norm (protocol in some places make 50 the start of hypoglycemia) however, your doctor is probably assuming he was fasting for the test. Tell him you are concerned about the results since he had eaten before the test.

Macks blood tests mirror mine. I have normal blood volume but it is on the lower side of the normal scale. B12 is normal. I haven't heard of an explanation for this except for the one about it may be the bodies reaction to hypoxia but I can't remember where I read it.

My little theory on ferritin levels posted above is totally wrong. I don't know how I got the idea that ferritin is used to build blood cells. Sorry

I just read the Wikipedia site and you need to talk to your doctor about it. Print out some of the articles on the internet, you might look in google's scholar section to do your search since anything written by a professional will have more influence with a doctor. I don't know how many doctors are familiar with using pulse pressure as a diagnostic tool, I use to complain about low pulse pressure and even was documented as having it but no one seemed want to investigate it.

If you go to a neurologist find one that does a q sweat test. This test is simple and painless and can detect small fiber neuropathy where the regular conduction test will not. You probably will have to have the conduction test also to make sure your main nerves aren't being affected. It is best to get these tests done to rule out something other than pots or if you are really lucky find something that can improve your condition.

I understand hoping that they could at least find something to fix. I was hoping for an adrenal tumor since that can be corrected and was disappointed when I came up negative. Don't feel like a hypochondriac, the ep test isn't designed to detect pots, your friends will have to use the energy use to look at you cross eyed to research your disease if they want to understand it. I went through 2 ep tests before I had a diagnosis and know the disappointment you feel. The funny thing is that after the first test I was told they found an extra pathway but couldn't get it to fire so they left it alone. Months later the doctor denied ever saying that and said they found nothing. That bothered me for several year until I finally went to another doctor for an ep test and of course they found nothing. I felt like a hallucinating fool.

The answer to your question is yes pots can be sporadic in some cases. I have had several tilt table tests I think around 8, some of them showed nothing and with others my symptoms came out dramatically(I was told after the last one I had extreme pots, what ever that means) . It seems that as I got worse the tilt table tests showed more consistently that I have pots. So if the tilt table tests can be sporadic so can the at home standing tests ( the same thing has happened to me).

I remember that Dr. Abdallah told "worried mom" that males can compensate for pots and blood pooling better than females because they do not have progesterone. This was in a thread earlier this year. I know nothing about it so I'll stop here.

Ask your psychiatrist why she is raising your norepinephrine when it is already too high. High norepinephrine can cause cardiac problems as well as anxiety. Talk to the doctor (again) who is treating your pots about the drugs you are on and if they will make your pots worse; if you have any medical research about the subject present it to him/her. There was a thread here not too long ago about a study that indicated ssris and snris do cause some problems with dysautonomia. The best way to handle this is to try to get your pots doctor to talk to the psychiatrist if he has any problem with the effects of the psych drugs on you. You need to emphasize your concerns to him. Also it does take 4-6 weeks to see if an antidepressant is working and some of the side effects do go away.

I live on the East Coast and I can barely stay vertical more than 15 minutes on some summer days. The weather definitely affects your condition and the change of seasons can also make you go through a good or bad spell. This past summer was bad, worse than normal as far as I was really potsy but when it started getting cooler in September I went through a spell of about 2 months where I was actually pretty productive for a while.

One thing they can do to help prevent the trouble I had is do blood tests to test the levels of norepinephrene before giving a norepinephrine reuptake inhibitor. This test was not available when I was started on antidepressants and if done it could have shown that I did not need anymore norepinephrine (ne). While on cymbalta, my ne levels were 580 resting which is well above the reference limit and almost qualifies me for Vanderbilt's pots study which requires a standing level of at least 600. The same can be said for serotonin, doctors no longer have to throw pills at patients blindly trying to guess which neurotransmitter they are low on or at least they can guard against raising the levels too much. I wonder if the study took blood neurotransmitter levels before and during the study?