vemee

I got scolded by my doctor for restarting cymbalta at 60 mg. It was probably too big of a jump for you especially since it sounds like you are not a large person. Cymbalta increases norepinephrine which increases heart rate and blood pressure.

I have a similar problem. Sometimes I can not take a deep breath and have to make several attempts before being able to take a complete deep breath. My neck feels like there is a vacuum on the inside. It is sometimes is a struggle to breath. I don't know what causes it but beta blockers have made it worse. My daughter who also has pots has complained of not being able to take deep breaths.

I went to Vanderbilt and NIH in the same year, both places took my supine norepinephrine levels and Vanderbilt also took my standing levels. At Vanderbilt my supine levels were around 457 and standing levels were over 2000. The Vanderbilt test was done while off all drugs and on a controlled diet. A few months later I went to NIH to be evaluated for a pheochromocytoma and my supine level was around 585. This was taken while I was on cymbalta. I was negative for a pheo. On return I asked my doctor to talk to Dr. Raj at Vanderbilt about finding a way to reduce my norepinephrine levels. He suggested I get off the cymbalta and start a small dose of clonidine. I checked with the psychiatrist and he agreed as long as I switch over to lexapro to catch any depression. I went through the pits and was so irritable my wife took me to the emergency room to have my medications evaluated. After waiting 4 hours on a cot in the er ( I had agreed to a voluntary commitment) I got fed up and told them to either take me upstairs or produce a detainment order, it they did neither I was leaving. Nothing was done until I tried to leave then they quickly moved me upstairs after being tazered. I was declared bipolar and heavily medicated with haldol. No one would listen that I was having a reaction to the stopping of cymbalta. The above article backs me up but since I am just a patient no one listens. In fact one person more or less told me I didn't have the ability to question a doctor's diagnosis. Stopping the cymbalta would have taken the norepinephrine levels down to where they were at Vanderbilt and taking clonidine reduced them even further so they took a big fall and I honestly believe that was the reason I acted the way I did especially since it is out of character for me to be hostile. When my pots got severe I was on cymbalta, I got off of it when I started having pins and needles feeling over my body. At that time getting off was a breeze but two years later when I had to get off of everything again I became very irritable. Something changed biochemically when pots became severe, I don't know it it all has to do with norepinephrine or if there are other factors involved.

norepinephrine and aggression This article is a summary for a longer paper but it does a good job showing the effects of raising and lowering norepinephrine levels. Basically any major change in levels causes irritation and possibly violence. There is a lot more study that needs to be done in this area but I think physicians and psychiatrists need to start using serum norepinephrine levels in guiding the use of these medicines instead of guessing and going by how the patient feels. Pots people have altered norepinephrine levels to begin with and the doctors need to take this into account.

Yes we are going to Dr. Abdallah, he is a wonderful Dr. I can relate to your son not feeling the high heart rate I never felt mine until I got to around age 50. I would some times check the pulse ox during equipment check and would be surprised my pulse would be in the 120s. I use to have a heart rate monitor for running but got rid of it because it would keep showing a high heart rate when I felt like I was comfortable running at the pace I was. It wasn't until I got older and the training heart rate range decreased that I started feeling the tachycardia. My last day at work was spent working on building a confined space simulator in Henrico county. All I did was fetch tools and my heart rate was above 165 and I was throwing up. I marked off because I knew I couldn't fight a fire that night. Two weeks earlier I had been the nozzle man in a fire and ended up not being able to pull the hose into the fire room to completely extinguish the fire, I was too weak and was blacking out. After I marked off I got worse so that the symptoms I only felt in full gear and vigorous activity started happening with everyday activities. Good luck with Dr.A he is a very kind and compassionate man. Dr. Abdallah also works with Dr. Grubb, who is in Toledo, Ohio and is one of the leading experts in the field.

Congratulations on the baby and on finding a specialist for your son. I have a daughter with pots and I have had pots since I was a teenager so I can relate to what you are going through. I was also a career firefighter until 5 years ago when my pots became severe and I had to retire and go on disability. My advice is to echo what everyone else has said and to encourage you to push the doctors for treatment. The only way to get treatment may be to bypass the local doctors who do not know anything about the condition or minimize it as a minor condition and go to the doctors that are hooked into the national researchers. When I left work I had a terrible time getting taken seriously. I think you will agree that it isn't good for a firefighter to start passing out while in a burning building. When my daughter was diagnosed we went to a specialist in Fairfax, Va. who gave her medicine that has helped her get her life back. If possible it is good to know the cause but at this time there is not a lot known about the different causes of pots. Your son will need to know how to deal with this condition throughout his life and will have to make career choices knowing that some careers may not be the best suited for his condition. However, if he chooses to take on a physical career such as firefighting he needs to know what his body is can do and how he can cope ( I would usually have to drop to a knee and wait for the syncope to pass before continuing on with the fire). With the proper treatment he may have no limitations. Even with the mild pots of my youth, which was undiagnosed, I managed to get through college, 5 years as a Marine Officer and 13 years as a firefighter with several odd jobs in between. I say that as encouragement to him not as bragging. I was in great shape when my pots went South and I had to leave work so don't let him think it is his fault that he has the disease.

Takusubo cardiomyopathy is also called the broken heart syndrome because it can occur when people are under emotional stress such as the death of a loved one or the breakup of a relationship. The cause of this condition is not sure but they think that it has something to do with high norepinephrine levels, that is why the doctors were saying that pots patients could be predisposed to takosubo since we already have high norepinephrine levels. This case is just one case and I don't want to come across as chicken little; it would be the same as if a pots person got in a car accident and someone said all pots patients are prone to be in an accident. The thing I am wondering about is at what level is the norepinephrine when it is considered detrimental to our hearts? My standing level is above 2000 pg/ml but my supine level is 457 pg/ml the upper reference limit is 498. This test was done at Vanderbilt under controlled conditions so the levels are probably higher during everyday life. At NIH I was tested for a pheochromocytoma and my supine level was 585. I was on cymbalta at the time and it can be seen that the drug pushed my levels up by 128 points. While on cymbalta I developed 1st degree block and partial right bundle block. I don't have any proof that the drug induced high levels caused the blocks but it is interesting that they disappeared when I got off of the drug. It is also interesting that I did not develop the blocks just from the high standing levels. I guess the supine levels have to be consistently past a certain point to do damage. It is also good news that the damage seems reversible. This is just opinion and not based on research, I'm just babbling on about what I've observed in my case. Do any of you know of the effects of high norepinephrine levels and are our levels really high enough to produce the negative effects?

I agree that not enough is known about pots to know the full effects of the condition. Like Futurehope I don't walk around each day fearing that it will be my last but I have to wonder at what damage is being done to my organs because of low perfusion. There was a thread on here recently about adrenal insufficiency, could that be a result of autonomic dysfunction instead of just a concurrent condition? What will old age be like for those of us that have had the disease most of our lives? Too many doctors just look at this as a case of tachycardia and do not even consider systemic involvement.

I had a tilt table test at the local medical college and even though my heart rate went up more than 40 points the doctor said I didn't have pots because my bp did not change. He said my heart rate was from being overweight; I had gained over 50 pounds the year my pots got severe. He was almost mocking me at the time for thinking there was something wrong with me. Later he told my work there was no biological reason I should be out of work ( I was a professional firefighter) except that I was fat. Obviously he is an idiot, and I had to go to Cleveland Clinic to get an accurate diagnosis. The moral of the story is that doctors use weight as an easy excuse to get out of looking for the real cause of symptoms. I read an article about a pots patient that developed takotusubo cardiomyopathy Takosubo cardiomyopathy in a patient with postural tachycardia syndrome The article is just a report on a single case and does not prove a link but it suggests that the issue needs to be studied to see if pots predisposes patients to this type of cardiomyopathy.

Has any one who has been on a norepinephrine reuptake inhibitor ever had trouble with extreme irritability or anxiety when you get off it or lower your dose past a certain point? After my pots became severe I noticed I would have extreme reactions to getting off cymbalta or effexor when in the past I did not have that reaction.

not only looking lot an idiot but treated like one. Happens when standing or sitting for a long time. I have had it for decades but the worst was when I was a firefighter trying to give instructions to responding trucks on where to set up, I sound like a total fool and it really zapped my confidence. Some where on this site and you will probably have to search here and on google there is an interview with a doctor from Cleveland Clinic where he addresses this problem; it seems to be a common pots problem. Talk about looking like an idiot I had to edit this post because I left out half of a sentence . The sad thing is I belong to mensa but you would never know it.

The comment about low thyroid causing a low pulse pressure fits me.

I have had pots since my teens and have gotten progressively worse. I am now 52 had to retire from the fire department and go on social security. I have had a diagnosis only in the past 4 years and that was after doing most of the diagnosing myself with the web. When I was younger I had brain fog and fatigue but I was able to be physically active. The fatigue was attributed to depression and I entered into an adventure in the world of psychiatry. When my pots became severe and I was diagnosed I was thrilled at first that I had an answer to what had happened in my life and why I could not live up to my own expectations. That soon faded when the medicines wouldn't work and I had to go on disability. I don't do the things around the house like I use to because I got tired of pushing myself to the point of being sick trying not to let this disability disable me. I still feel guilty when my wife, has to pick up my slack after she comes home from work. I think the big problem is that pots is looked at as a disease and not a condition caused by various factors. I recently got evaluated for elhers danlos because I was looking for a reason for my severe pooling and a genetic reason for why one of my daughters has pots. Both of us were negative. I don't think they have gotten far enough into research to know how this condition affects our bodies and all of the causes. I have been told pots has no negative effects on the heart but there is a case of takotsubo cardiomyopathy that may be linked to pots. takotsubo cardiomyopathy in a patient with postural tachycardia syndrome.

I have been diagnosed with a mild case of small fiber neuropathy. I started out rather rough when my pots became severe. Pins and needles on the feet, legs, arms and chest. After 6 months symptoms started to go away, this was 4 years ago. I still get a buzzing in my feet now and then and sometimes standing or walking I get stinging on the face. The normal test for neuropathy was negative however I was given a Qsart-test which is an electronic version of the sweat test and the neuropathy showed up.

This is interesting, unfortunately I am rather ignorant of the renin-aldosterone system so I can't really give you a good theory. However my pulse pressure is usually below 40 and has been documented as low as 8. In fact when I was a research patient at Vanderbilt it was usually below 20. My blood volume taken at both Vanderbilt and Cleaveland Clinic was normal and my vascular resistance was high. I have read that a pulse pressure under 20 means the body is not being adequately profused, however when I asked a doctor what it means after they record a low pulse pressure they say they aren't sure. In my case since I have severe pooling ( 44% drop in circulating blood volume when standing) perhaps the mechanism for response in me is the same as those with low blood volume.

I am 52 and have had pots since at least my teens. I wasn't diagnosed until 4 years ago when the symptoms got really bad and I had to leave work. Before my diagnoses I had the usual "there is nothing wrong with you" experience that others on this board have had. I was passed off as being depressed and given antidepressants which caused their own set of problems for me. I had been diagnosed with ncs in 95 but it was made to seem like it wasn't that big of a deal and I was taken off the medication I was initially given.

Hello, I am 52 and can trace the symptoms back to my teen years. Symptoms went from manageable to severe 5 years ago.

In an earlier thread Ramakentesh stated that some pots patients try to regulate their symptoms through their carotid artery which involves releasing a lot of adrenalin and norepinephrine ( this is not a direct quote so forgive me if I am off a little. The thread it can be found in is titled anxiety.) I found this to be very interesting since years ago I was told that even though I am not diabetic my body manages my blood sugar the same way; the glucose levels never go out of the normal ranges but my body overreacts to dropping levels by sending in adrenalin and then thinks I have too much so it dumps glucose into the urine. I wonder if it does the same in pots because my norepinephrine levels are high and so are my irritation levels. Ramakentesh, where can I find the research that you have found on pots and the fight and flight syndrome? I would like to show it to my doctors . Presently it is being treated as a bipolar problem but I really do not think I am bipolar. I was diagnosed while having a reaction to coming off cymbalta which increases norepinephrine. I don't have the mood swings but I do have the irritation that neither tegretol or effexxor (they couldn't get it through their heads that my norepinephrine levels were too high) controlled. I am off all psych drugs now to see what exactly I am like . I feel the problem is related to pots but once you get labled with a psychotic disorder that is all doctors see. Fortunately, I have a pots doctor who believes my problem are from the high amounts of norepinephrine the body puts out in trying to control my severe pooling.

Effexor and cymbalta will increase your norepinephrine. If your norepinephrine levels are high to begin with then it is not a good idea to use these drugs. Talk to your doctor and ask if they will test your serum catecholamines to see if you need to increase your norepinephrine; sometimes doctors are hesitant to do this test since they are not familiar with what they mean. Also do a web search on effexor to see what others are saying about the drug and the withdrawal from them. My personal experience with getting off of effexor and cymbalta is that of going through emotional distress. However, not everyone has the same makeup and they react differently. You can always find someone who has had a negative drug experience no matter what the drug is. I do not know if klonipin helps migraines but I haven't noticed any side effects although I have heard you have to get off of it slowly.

I did not have anxiety until I was treated with antidepressants. However, I did have periods of irritability where looking back were probably the fight or flight syndrome leaning on the fight side. My standing norepinephrine is over 2000 so I am getting a good dose of it. My biggest problem was that the antidepressants I was given are designed to increase norepinephrine. My daughter also has pots and has a lot of anxiety ( we are seeing a geneticist next week). Has anyone tried clonidine ? It is suppose to reduce norepinephrine but I have not had any luck getting my doctors to prescribe it.

Your situation sounds familiar. I was diagnosed as bipolar based on the reaction I had withdrawing from cymbalta. Even with a mood stabalizer I still get my bad times. My wife noticed my irritability would begin a week before my testosterone injections and end a little over 24 hours after the shots. My psychiatrist says he is starting to believe that I do not have bipolar but a neuro endocrine problem. My norepinephrine levels were measured at Vanderbilt and found to be above 2100 when standing. This is about 4 to 5 times the level of normal non pots people. I also believe that my problem is due at least in part to these levels. I do not know the biochemistry of how testosterone affects norepinephrine but my mood is more stable now that the frequency of the shots have been increased. Of course you do not want to take testosterone but my daughter also suffers from pots and anxiety. She was put on yaz which evened her out her moods. We are thinking about going to a geneticist since this seems like a genetic problem (my mother remembered that her grandfather had to wear rubber stockings. You also might ask to have your catecholamines checked.

I still feel guilty not working but the only jobs that I am now qualified for after 13 year in the fire department are non skilled labor job, which of course involve a lot of standing or long periods of sitting. At my social security hearing the judge asked the occupational specialist if it were realistic that someone would hire me, let me work for an hour or two and then lie down until ready to go again; she said no and the judge agreed with her. However, when I have a good day or even a good string of days the guilt comes roaring in and I feel like I'm better so I ought to get a job. That is unrealistic of course.

I don't know what to tell you, I have had depression for years and 2 years ago was diagnosed with depression. I can tell you that while on effexor I would get the dry heaves and near syncope several times a day. Now that I am off those occurrences are a lot less frequent. I still get the near syncope but it is when I remain vertical to long or try to do too much work. I doubt my diagnosis of bipolar because it was given to me when I was having a violent withdrawal from cymbalta. I become very hostile for a few days when I go below a certain dose of antidepressants and tried to push my way through 8 cops in the emergency room and put a male nurse in a headlock thus I was diagnosed as bipolar. After I am off the antidepressant and through the withdrawal I am a normal person (except for the pots). I was told that I should not have been on antidepressants without a mood stabilizer because it could cause mania. I had been on antidepressants for 12 previous years and had several episodes of severe depression one of which kept me out of work for almost 3 months. I never had that problem before I was given the drugs. In retrospect, it was probably pots that sent me to a psychiatrist anyway. I went because I was trying to find out why I could not think clearly and a counselor said it was probably depression. The doctors couldn't find anything wrong. I have mentioned in several of my other posts that I have really high norepinephrine levels in my blood, I believe this has a lot to do with my psych problems and that somehow it worsens the withdrawal from norepinephrine reuptake inhibitors such as effexor and cymbalta. However, no one I ask knows if there is anything to my idea. I am on tegretol since I have nothing to disprove the bipolar diagnosis and am wary of getting off the medicine. To my knowledge it has not affected my orthostatic intolerance. Sorry that I am rambling but as usual when I sit for a long time I loose my concentration. I have also wondered what effects pots with the associated hormones and catecholamines have on our brains.

Flop: How does your bp do with eds? I never considered that I might have it but your description of heavy pooling got me to thinking. At Cleveland Clinic I found out 44% of my blood drop out of circulation when standing, so I guess it goes to pooling. Jump's description of symptoms fits mine pretty close. However my bp does go up when standing and when tested at Vanderbilt my standing norepinephrine levels are above 2200 pg/ml which they say is not that common.

This is news to me and I hope the researchers will look in to it. My levels of norepinephrine are high especially when standing (2230 pg. normal is below 4 or 5 hundred ) I have been diagnosed as bipolar but it was based on the reaction I had to reducing the dosage of cymbalta. I do not have the highs one is suppose to get when bipolar. I feel my problems are due to the high norepinephrine so maybe I have high histamine causing it. I also have a great deal of pooling (44% drop in circulating blood when standing) the norepinehprine could be a natural response to this. I can not understand how high amounts of norepi can cause pooling; I know that it would cause an increase in bp and heart rate but if anything I would think it should help with the pooling through vasoconstriction. There must be another factor working to cause the pooling. Does anyone else with hyperadrenergic pots have abnormal pooling? Going back to histamine, I get adrenalin surges when I use an antihistamine so I wonder if that indicates a problem with the way my body manages histamine. I'm starting to ramble so I had better stop; but to answer the main question : I would take gene therapy once they know for sure that by modifying a gene for pots they aren't screwing up something elsewhere. Could you imagine if gene therapy went wrong and gave all pots patients two noses? We would have to go through all the trouble again of getting a diagnosis for our problem. They would say our second nose was only in our head ( actually on our face) or that if we lost weight we would lose our nose.http://dinet.ipbhost.com/style_emoticons/default/laugh.gif