vemee

Being on effexor wasn't that bad for me except I would get bouts of the dry heaves and rapid bp drop several times a day. After getting off effexor I have had only a few of these incidents. My biggest problem was getting off; it is like coming off a narcotic. I would get extremely hostile to the point of looking for trouble. That is not my normal personality. Rage would well up inside me and burn. After a few days I would return to normal. I had that problem getting off of cymbalta too. The benefits to me of being on those drugs is not worth the withdrawal. I did not always have this extreme problems then reducing the dose or getting off (there were withdrawal side effects such as anxiety and sleeplessness which usually made me go back on the stuff) but the extreme reactions started when my pots got bad. I am also hyperadrenergic .

I have 3 girls also, two in college and showing no signs of pots that I know. My youngest is a high school senior and suffers from extreme fatigue. She has had pots symptoms for several years but now that she is 18 we can pursue the matter more aggressively in that she can use the same doctors I have who are somewhat familiar with pots. She has seen me lose my job and go on disability because of pots and is afraid that she will not have a chance to experience life. Looking back I can say I had pots since I was a teen but it was not unmanageable until I turned 50. My biggest complaints were fatigue and most of all brain fog. I try to cheer her up by telling her that if she does have it she can plan a vocation that is more pots friendly than one where you are standing all day. Of course that is much of comfort. I hope if she has pots the treatments will help but I am afraid if it is the same type of pots as I have it is hyperandrenergic and none of the usual treatments will work.

I understand that missing a vertebral artery is bad but is the part about the fetal origin of the cerebral arteries also bad? I ask this because I had a head scan that said I had fetal origin of the right posterior cerebral artery. I was told it was a normal exam, of course the doctor reading the scan also told me to just drink Gatorade and that nothing was wrong with me. I had to wait 2 hours for him to tell me this pearl of wisdom, why? I don't know, I arrived on time for my appointment but he was plainly visible in his office doing nothing and seeing no one except he did eat his lunch. The nurses quietly apologized for my wait but no reason was given, I guess he was having a bad mental day. I should have left but I went through a lot of testing and wanted to get the results especially since I needed a note for work.

Joy, have you gotten your results from Vandy yet? I am curious because I too have syncope when I am doing work and also get these instances where I go into the dry heaves and almost pass out. I was able to get my automatic bp cuff on for one of these instances and found that my bp dropped low then suddenly my heart rate and bp jumped to the high range to correct itself. It felt like what happens in some old houses when you shut a water faucet off to fast and the pipes shake violently. Anyway to continue to make a short question long, I was a research patient there and am considering going back as an outpatient, I did not know if they are going to give you any different medication than I had. I was discharged before they knew my catecholamines which were above 2100 when standing so I guess that puts me in with the hyperandrenergic diagnosis.

To all the good doctors out there who are really trying I apologize and I know you often have to pick up the slack of the other doctors that do not do a decent job. However, big business has taken over the medical profession as corporations own more and more clinics and hospitals. A lot of doctors are required to see up to 30 patients a day to make their quota. Some places call it production. If they do not make their production goals some companies penalize their doctors by cutting their salary. This leads some doctors to play a numbers game where they will only accept simple cases where the patient can be processed in the 10 or 15 minutes allotted for them. Cases such as ours that are more difficult are sent off to a specialist who probably knows less about our condition than they do. It seems that if you are fat you do not get taken seriously at many places. Modern Medicine has not yet figured out that sometimes chronically sick people can't go to the gym everyday or get enough exercise to keep the weight off. I gained 50 pounds within a year when my pots symptoms started full blast. I had a tilt table test with one doctor where I easily met the heart rate requirement for pots and then passed out and went into seizures when given the medication. Dr. said nothing was wrong with me because my bp did not change ( he didn't even know the proper parameters for diagnosing pots) and said my problem was my obesity, perhaps my blood was going into my fat. When told I was healthy and in good shape when this started he just shrugged it off and gave me 2 months off work to lose weight, no medication needed. Another time I woke up with the feeling of a rock stuck in the bottom of my shoe except I was barefoot. I thought It might be a blood clot so I went to the doctor and was told it was nothing. A few days later I had what felt like a charlie horse in the same leg and a fever so with the little medical knowledge I had as an emt I went to the emergency room and told them I had a blood clot in my leg. It turned out I also had multiple pulmonary embolisms in both lungs which are deadly if not caught in time. The sad thing is I feel I have to diagnose myself before I see a doctor or at least check his diagnosis and that is not good since they do or are suppose to know more than I. I try not to go into a doctors office and tell him what I think is wrong ( well not at first) because I do not want to give them tunnel vision and miss something I have never heard of.

It took 2 denials and a hearing to get my disability. I left work on paid sick leave in August of 2004, took state disability retirement September 2005 and was approved for social security in Feb of 2007. I was not a teacher but I was under the same retirement system as teachers in Virginia which was a blessing. Under the Virginia system I was able to retire on disability at half of my salary until the final decision was made in my case. They even provided a lawyer to deal with social security, the retirement system saves money when their retirees get social security. Anyway, the basics of social security are : you can't work while applying; you need a lawyer, I read somewhere that the majority of people rejected permanently did not have a lawyer. You also will get turned down by the first review and the second review (some cases do get approved but it is only a small percentage). The judicial hearing is where most of the approvals occur. It is helpful if you can get tests done on you by major hospitals that are leaders in the research of pots. Places like Vanderbilt will not become directly involved in the social security process but there studies on you will give your doctor a great foundation for building your case. I hope this was helpful.

When my pots symptoms got bad I started the year out at a healthy 165 pounds and ended it at an obese 217 pounds without a change of diet. My activity level was less since I would spend days sleeping. I now ping pong around 200 and 209. I have a strange story about losing weight: years ago I lost 12 pounds in one day and it did not come back. I lost it when 25 years ago when I was in the Marines and was transferred to Japan. I got on the plane at 165 and a day later I weighed in at 153. I ate junk food on the flight and during layovers. Looking back I know I had pots but a milder form than now.

The same thing has happened to me. A doctor gave me the tilt table test which showed me positive for pots then gave me the medication part of the test where I passed out, turned blue and went into seizures. The doctor, who was not present at the test, told me the problem was that I was overweight and said there was no reason I should not return to Firefighting. I told him that at the beginning of the year (test was in December) I was at my proper weight and percent fat and that I gained 60 pounds due to feeling bad. His reply was that it is a vicious cycle and gave me two months off to lose weight before returning to work. I had to go to Cleveland Clinic to get a proper diagnosis. I also filed a complaint against the doctor with the state for substandard care. I have not heard anything from the medical board in months and suspect the good old boy system will cover the doctor.

The way social security works is that you apply and get turned down then you appeal and they turn you down again. Some people get approved during the first two stages but the majority get approved during the third stage which is a hearing with a social security judge. There is another appeal after that but few get approved. People do better if they get a lawyer to help them. The process takes a long time and they say if you are working you do not qualify. A lawyer will tell you what you can and can not do. I did get disability based on pots so it is possible.

adderall was a wonder drug for me, but my body kept getting use to it so it lost its effectiveness. On starting it my blood pressure went high but it went back to normal in a few days. It also increases your metabolism so you will probably lose weight.

I just got social security disability awarded to me and the award was based on my pots symptoms. They looked at mainly the section in the disability rules concerning the heart. What helped me was I got a lawyer, and went to nationally rated medical centers such as Cleveland clinic and Vanderbilt. Even though those doctors do not fill out social security paper work there research will give your local doctor a big boost in validity. I took 2 years to get approved and that was at the appeals hearing.

I had an electrocariologist tell me and my work there was no reason for me to stay out of work because I only had mild pots. This was after a tilt table test where I passed out and went into seizures after receiving nitro. The doctor was very negative about me when the county lawyer interviewed him . I had to go to Cleveland Clinic to prove I had severe pooling (44%) to be taken seriously. I eventually found a good local cardiologist who supported me even though I still had to retire as a firefighter. If the US. Marine Corps says it is a form of dysautonomia then it is. Semper FI.

I'm here too. Diagnosis of pots for men could be overlooked since pots has the label of being primarily a woman's condition. From what little I know of the condition I can not see why sex would be a factor.

I have probably had pots since my teens and am now 50. In the past 3 years my symptoms got worse so that I could ot work. I am also a man.

Dizzy, I was at Vandy shortly after you were and Ialso was positive for small fiber neuropathy. Symptoms started 2 years ago with pins and needles in both feet then lower legs, forearms and hands. I would also have stinging in the face and trunk. Once I got on cymbalta the pain was not noticible. When I had to get off cymbalta for Vandy the pain in my legs and hands were not so bad but I had an almost constant burning on my chest and abdomen. The doctor found several places on my feet and leg where my feeling had decreased and the nurses found a painless place on my arm for an iv (unfortunately they only found it once). I live in Hanover County outside of Richmond, Va. so when I got back I went to the neurologists at UVA. They did an emd and found nothing which is typical for small fiber neuropathy and said the q test indicated a mild neuropathy which surprised them since they expected more damage after seeing the results of various tilt tests. They did not know what was causing the face and abdomen pain but suggested I be tested for diabetes which so far the results are always negative. They told me that the neuropathy might get worse down the line but for now they do not see me having any major problems. On a side note, have you received the results for the 24 hour urine test done at Vandy?

Hi, I have had pots probably since my teen years but was just diagnosed a year ago when it got real bad and I had to retire from firefighting. I am going through the social security process now. Sometimes when I am having a good day or run of days I think about dropping the social security attempt and getting a job, however then the symptoms return and I realize I am not consistant enough to be a good employee. Also at 49 the kind of jobs I could get is limited to ones that require a lot of standing which I could not do.

I got my blood catecholamine test results from Vanderbilt other day and I was surprised at the findings. I went in thinking my levels would be low since I felt so bad and suffer from biochemical depression but this is what they found out. supine dhpg 1418 upright 2966 supine ne 456 upright 2139 supine dopa 1978 upright 2435 supine epi 27 upright 47 supine dopac 2400 upright 3086 supine da 8 upright da 35 supine renin .5 upright renin 2 supine aldo less than 2.5 upright also 8.8 I have not deciphered this yet except that my norepinepherine is super high and if I am reading it right only 10 percent of pots patients have ne above 2000. Perhaps those of us in the top ten percent should have a special smilie designed for us. Serioulsy I am not sure of the meaning. I am going to a neurologist at the University of Virginia so I am hoping he will shed some light. They also found I had small fiber neuopathy, that is the main reason I am going to UVA.

I have the same experience as tearose, I wake up with anxiety or start to get it when falling asleep at times. I have been able to get my pressure during several episodes and I find my pressure is dropping or has dropped often with a systolic in the 80s which is symptomatic for me. I have had one episode at Vanderbilt but my bp was normal, probably because I waited too long to call the nurse and had gotten up and moved around. As far as sleep medicine, Lunesta helps once I am asleep but it does not put me to sleep. It did work for 2 days but after that no relief. Same with ambien.

I have used cymbalta for a year and a half and have found it to be helpful. I do not know if I am hyperandregeric yet but I when I got off cymbalta to come to Vanderbilt I definitly felt like my adrenilin was pumping full blast at night and I have had only one night in the past 3 weeks where I can say I got a full nights rest. Also cymbalta has a pain reducer in it to take away the pain from neuropathies. Before I was on it I had intense stinging on my legs,arms and trunk. While on it no pain. Now that I am off it I have burning and stinging on the trunk and head. The muscles in my back also did not feel as knotted on cymbalta, so it could help that, in fact I know of one fibromyalgia patient that is being treated with cymbalta. So in short my experience has been positive, if you take it discuss with your dr. the best way to start and how long you should wait to see the benefits (usually 5 to 10 days). Also discuss how to get off it if you have been on it for a while because from personal experience I found that there are withdrawal symptoms.

I have noticed this also. I don't know the cause but look up a condition called "trigger finger" and see if you can relate to this. It is not the same thing as what we are talking about but it may go along with it.

Sunfish and pooh bear gave very detailed accounts of their Vanderbilt experiences and will go along way to prepare you. The staff at Vanderbilt are excellent and they will not push you past your limits as long as you let them know what your limits are. I am there now sitting through my first medication test. These tests last for 4 hours and the majority of the time is spent sitting in a chair with several 10 minute standing sessions. The staff will tell you what you need to get off and how long you need to be off them before you arrive. I was told I could stay on midodrine until my arrival. Again Sunfish's "Vanderbilt Chronicles" very detailed and will answer a lot of your questions.

Like everyone else has said, don't worry about calling your doctor with this new symptom it might give him a better idea how to treat you. I have similar symptoms when I am going to sleep and have been awaken by them. I found that my diastolic was dropping below 100 and usually below 90 just from lying down. It would not last long and I could go back to sleep after moving around. This week though, I would wake up with big time smothering that stayed with me even after getting up and I could not go back to sleep because when I would start to drift to sleep the symptoms would restart. Tuesday and Wednesday I only got about an hour sleep. My blood pressure also was not dropping with the symptoms. Someone in another post who had just seen Dr. Grubb said she was told the anxiety she felt was from the body pumping adrenalin to keep her bp up. Maybe this is what is happening. Any way your doctor needs to know this.

In a few years I could probably give you better input. If I can ever get the brain fog under control I plan to wok on my masters in physics and maybe in biology. Both fields interest me especially biology. The concept of time is also a major fascination to me. I started the process last September with a basic biology class, I need to retake some math and chemistry classes since it has been 30 years since I was in school but after the basics are done I can get into the core physics classes. I was going to take classes this semester but I cancelled them when I got accepted into a Vanderbilt study. I figured getting off all my meds for the study would make me brain foggy and stupid so I did not want to waste money for classes . I was right about the being brain foggy and stupid part there is no way I could learn anything new at the moment. Anyway I'm off to Vanderbilt tomorrow for a 2 week stay, maybe Dr. Robertson will be the one conducting the study and I can ask him about space flight and pots.

I think the standard answer to why astronauts get pots is that their systems atrophy due to the lack of gravity. However, I think you have a very interesting theory and it would be worth investigation. I am assuming you are talking about the part of Einstein's theory that says the closer an object gets to the speed of light the slower time is for that object. Some physics websites have little calculators telling how long a trip to a distant star will take for you and how many thousands of years in the future it would actually be on earth when you return if you were traveling near the speed of light. There have been experiments with aircraft and space flights if I remember that have backed this up. Even though we are only talking a few microseconds difference between earth and space time it could be enough to throw something off. Kind of like if you land in a time zone an hour ahead of your own and you do not reset your watch; you would be late for everything until you get with the local time. Maybe that is what happens with the astronauts, time slows for them and they have to catch up with the rest of us when they get back. This would assume that there are different levels or frequencies our bodies interact with time. An example would be running your finger down a guitar string as it vibrates which makes it give sliding sound (don't know what the actual term is called. If you do that with 2 guitars and one string is slightly behind the other they will not sound the same. How this effects the majority of us who have not gone to space, I don't know but It would be interesting to compare us with the astronauts. I am just have a BA in history so I don't know if there is anything in the science fields that would make all this credible. Probably there is something out there that could be measured which would answer our questions but we do not know to measure it or have the tools to measure it yet. Brain fog is the pits isn't it.

I have been on cymbalta mainly for depression but it also has helped pots. I have been off of it for a month for a series of tests and can really tell the difference. It did keep my blood pressure from dropping at night, now that I'm off my blood pressure will start dropping as I start to sleep. I use to think it was anxiety caused by depression but when I took my bp I found the systolic was less than 90 and the diastilic was around 50. Cymbalta also seems to take away the burning or stinging pains I get on my legs and arms.