vemee

I have had nothing but bad luck with antidepressants especially the norepinephrine ones. I was put on antidepressants initially because of fatigue and other pots complaints which the med doctors said was depression only years later did I learn about pots. The serotonin drugs did nothing for me but made me feel weird but I went into clinical depression and anxiety when taking the norepinephrine drugs at first. Later I could tolerate them because my norepinephrine levels were too high and I was kind of numbed. While on the norepinephrine I developed a first degree heart block and partial bundle branch blocks which cleared up after I got off of them. Withdrawing from the norepinephrine drugs was like getting off an illegal addictive drug. I had lots of complications especially since no one would listen that my problems were from withdrawal; they wanted to diagnose me as bipolar which I had never been manic before or since. I have been off all psych drugs for almost a year and feel a whole lot better mentally than on them. Pots wise I am still the same so I can't claim that they made my pots worse. As far as recommending an antidepressant just take what I say with a grain of salt. I am not a balanced view since my experience was so bad. If you need it then take it, your experience might be better, not everyone reacts to drugs the same and there is always some one who is going to have a negative experience with any drug. What I wish is that more studies would be done on how pots affects and/or can cause mood disorders. I have noticed on this board several people saying they have anxiety above what is normal when having a chronic disease. My daughter developed severe anxiety and had to be homebound educated for a year when she developed pots in eighth grade. We were so focused on the anxiety that we overlooked the pots. By the way she is on celexa and is doing fine now and no heart problems have been noted. I think that in some people pots causes the norepinephrine levels to go crazy (mine are over 2000 when standing, the upper ref. limit is 499) which causes mood problems but without valid research it is just my opinion and counts for nothing. My question is are the patients with mdd depressed because of the autonomic dysfunction or is the dysfunction causing the depression

I tried it but it did not help with pots. It did take away the pain I was having in my shoulders.

I had pots long before I took medicine however meds could have made it worse. Epigenetics is an interesting new field, they have found that even food affects the expression of dna.

I have read some articles on this a long time ago and if I remember right they say that those people whose heart stop on the tilt table are not at a greater risk of sudden death. However, I am glad you have the pacemaker since it is better to be safe and that it is a reassurance to you. I had a tilt table test when I turned blue and went into seizures after getting nitroglycerin. I don't know if my heart stopped for a few seconds but the nurses were looking at the cardiac monitor tape and going "is that asytole?" The doctor was too busy telling me there was nothing wrong with me to address the heart rhythm. He ignored that my heart rate rose over 40 points during the first part of the test.

I have times when I can't take a deep breath and have to make several attempts before I can get one. Usually I am not doing anything but sitting when this happens. I have no idea what causes it. Just slightly off subject, how many people here suffer from low ferritin levels that are unexplained and also have red blood cell levels that are above the normal limits? I have a theory that those who pool heavily have low ferritin levels because the body is not being supplied with enough oxygen due to the pooling and is reacting to the hypoxia by overproducing red blood cells thus depleting the ferritin level. Of course that is not based on any medical evidence that I know of so it is probably not valid.

None on either side of my family either. I wonder if the cardiomyopathy could be from unrecognized pots?

I am sorry you are going through this. It is hard enough to have this condition with the support of family much less without their support. I can tell you that I have felt the same way about my performance as a husband and a father and I still wrestle with guilt and regret. I have been fortunate that my wife supports me but I always remember the things I couldn't do because I felt bad and didn't know why. Every time we went somewhere I played out with fatigue and headaches. Now that I know I have a real physical problem it is a little easier to take and my kids who are young adults now have an understanding of what has been going on with me. They have told me when I expressed regret of not being superdad that they did not miss anything and that they thought I did a fine job. I guess all you can do is do your best and explain to them why you have limitations, they may not understand now but they will when they are older. Again I am so sorry that your ex is not being supportive of you.

Adderal which is similar to ritalin really worked great for me. It was almost instantaneous, the only problem was that I got use to it so fast that every couple of weeks I would have to up the dose until it could go no higher and I had to stop.

It can take months to get over the withdrawal effects of an antidepressant. Also people are more vulnerable to depression this time a year as the amount of natural sunlight decreases.

I am sorry you are going through this, just know you are not alone and a lot of us have faced it or are facing it. I left my church several years ago because people were saying behind my back that nothing was wrong with me but I was just trying to get out of work. Why people think that getting out of work on disability is something desirable I will never know. I am trying to go into a new church but can only manage the early service. I like the people but they keep asking me to stay for Sunday school which usually is too long of being upright. It has gotten so that I don't want to do anything now because I feel I can't make the effort needed to be part of an organization. Anyway, you know you are sick and that others have the same kind of sickness so let them (the ones that don't listen) live in their ignorance. Some people don't think you are sick unless you are paralyzed unless they are the ones sick.

The crying and anxiety is most likely due to the chemical changes in your body as it tries to handle your pots. Do a search on anxiety on the message board and you will find a lot of us suffer from it also there are some pretty good explanations on how the body's increased use of adrenalin and norepinephrine messes with our emotions. You are also going through a stressful time in your life with going on disability and having a new disease. I suspect that walking gets your blood circulating to such an extent that it actually takes care of your pots. Do you have pooling when standing? Ask your doctor if you could try midrodine (proamatine) which helps constrict the veins and improve your circulation which might reduce your heart rate. I get the shaking also at time it may be from the muscles getting poor blood flow at the time or some of the other causes mentioned previously.

When I was on cymbalta my ekg started showing first degree heart block and partial right branch bundle block (not a life threatening condition). When I got off all antidepressants my ekg became normal. Also when I was on ssris I was showing borderline evidence of an old heart attack, this cleared up also after getting off antidepressants. Like any meds there are side effects which show up on different people. With me antidepressants did seem to affect my heart but not seriously.

Since you got sick on cymbalta it is a good idea to stay away from any of the other norepinephrine reuptake inhibitors since they don't go too well with people who have really high norepinephrine levels.

I have had several doctors that did not like the fact that I researched the internet yet they were not willing to do the research themselves. Doctors are under pressure to make money and that's ok but the downside is that in order to make money they have to see a lot of patients in a day and try not to spend more that 10 minutes with them. Patient's like us take more time and are less profitable to them. You also get into the ego thing when you do your own research, some doctors don't like the idea of a patient knowing more than they do so they dismiss what the patient is showing them. Another problem we have is if it can't be found with the initial set of vitals and cbc blood test an illness doesn't exist. I heard one doctor on "Medical Mysteries" say that there is a problem with doctor education in that if they come across a condition they don't recognize they write it off as mental problems. That being said there are good doctors out there who will take there time and listen and will seek an answer to our problems, it is just unfortunate that some have to go through the bad to get to the good. If I did not find pots place I would never had known what I had or where to go for treatment. I would have been fired from my job, not retired, for anxiety and be stuck trying to do an unskilled labor job that I physically could not do and would probably been fired from that for under performance. We have to be our own advocate and if a doctor isn't taking our symptoms seriously then we need to change doctors. We should be tactful when asking if we need to be tested for something and realize the doctor may have seen the condition we think we have and can judge better by experience than we can by our research if we should be tested. I know I have asked for unneeded tests before but I have also asked for tests that showed I had a problem with something. I have been sitting up too long so I am rambling but before I end this I want to emphasize that Doctors don't know everything and often don't have time to research a patient's condition so we need to step in and help them where they are deficient.

I did see one site that said beta blockers can cause headaches. Personally I did not have any headaches but I did pool worse since my heart was slowed and bp lowered but the midrodine doesn't seem to be that effective.

You have to go to the Social Security office to find out what your disability will be. It varies with your salary and years of work. There use to be a website that showed your benefits but they took it down because of security concerns.

She was diagnosed with a tilt table test when she turned 18. When we first noticed the rise in heart rate it on standing it was while she was during the time she had severe anxiety. We didn't get her tested for pots because she was on so many psych meds that we were told it might throw the results off and we didn't want to add another problem to what she was already dealing with. The anxiety needs to be taken care of first but if possible it would be nice if you could address both issues at once since by treating pots you might reduce the norepinephrine which in turn may decrease the anxiety. I know they have done studies that show pots is different from and presents itself differently from anxiety but I wish they would do a study of pots patients with anxiety to see if some of the anxiety is caused by neurotransmitter changes. Not all pots patients have the same degree of chemical changes and aren't affected the same. That's Vemee's theory of the world of pots and should be taken with a grain of salt or gatorade. I hope things turn out well for your daughter and you.

My daughter also began showing pots symptoms at the start of eight grade, however pots was drowned out by her severe anxiety. She had to be taught at home the second half of her eighth grade because of the anxiety/depression. We did not address the pots until she was 18 and was officially diagnosed. My uneducated opinion is that the anxiety is the result of a change in norepinephrine levels. The body produces more norepinephrine in order to compensate for pots. I don't know what her levels are because I couldn't get the doctors to listen to me but mine are high (over 2100 standing, upper limit of 498). She has responded to proamatine and her anxiety is now manageable in fact it isn't a problem for her. If the doctors want to put your daughter on an antidepressant don't let them put her on a norepinephrine reuptake inhibitor which will increase her norepinephrine levels even more unless they do a blood test to see what her levels are before they start. I think pots can be genetic but as of now there is no proof to back it up. I can trace a line in my family that seem to have dysautonomic symptoms but they were never diagnosed. Also there is no evidence of the known genetic conditions that cause pots in my family. I also started getting pots symptoms around 8th and 9th grade and was known as a nervous kid.

I was told once that my body over reacts to changes in my blood sugar. Even though the sugar stays in the proper limits it if it starts to rise the body starts to dump it into the urine. When it starts to fall it starts pumping adrenalin. Case in point, other week on the way to the doctors I stopped and got a sausage biscuit after getting to the doctors about 30 minutes later they found sugar in my urine and my blood sugar level was at the same level it is when I fast ( I did not know they were going to take my sugar level otherwise I wouldn't have eaten anything). I have caught my sugar level as low as 38 but this is rare since I do not test it anymore.

Hi worried Mom, I know it's hard to see your son go through this but don't give up hope. I have an 18 year old daughter with pots who has responded to treatment and is doing better, she is not cured but she can do more things and is now ready to go to college in 2 weeks. I believe we have the same pots doctor in Fairfax who is tied in to Dr. Grubb one of the leading pots experts so you are getting good care. I am in the same situation as your son in that pots hit me around 8th grade. At the time I did not know I was sick but I knew I did not feel good. I don't know if your son will grow out of this as some do, I did not but I lived a physically active life until I was about 50 and the pots became as Dr. A put it extreme. I think I wrote you in your first post about my career in the Marines and fire department so I won't repeat that but I do want to say let him test his limits. It is important to know what he can and can not do physically and mentally and if he can find ways to get around those limits. Don't put him in a cocoon so that he is afraid to try anything challenging. You son's advantage is that he is young and researchers are working to understand pots, it may be that in 10 years they will have a cure or better treatments so even if pots does not go away on its own it may not be a life sentence.

I just found out my kidney function is starting to decrease. Just a small little blip which may correct itself and isn't anything to worry about at the moment but combine that with low thyroid and low testosterone as well as not being able to keep my ferritin levels within the normal range it makes me think something systemic is causing all of this.

My iq is in the top 2 % of the population but you would never know it. Sometimes everything works as it should but most of the time I have trouble concentrating on the simplest things. I stand up to do something and by the time I am finished standing up I forget what I stood up to do. I can be a pretty good writer but most of the time it is hard to construct sentences that adequately depict my ideas. When sitting or standing a long time I can come across as just plain stupid. My speech also suffers when I go searching for words or lose track of what I am saying and veer off subject. I also have times where I slur and say only part of what I am trying to say which means nobody knows what I am saying. Yeah, I belong to Mensa but instead of bragging about it I say it only to show the effects of this condition and how it has severely limited the abilities given to me.

Here's a confident answer for you . It has been awhile since I read this but I believe the nitro causes the release of adrenalin to simulate working conditions. With it you can identify ncs orthostatic hypotension and provoke hidden pots if the first part of the test is negative. There is debate whether the drug part of the test is really useful. I was told by one doctor that no one pays any attention to that part of the test anymore ( this was after I passed out, turned smurf blue and went into seizures).

In my family pots may be running down my mother's father side. No one was officially diagnosed with pots but my great grandfather had to wear rubber stockings. This side of the family is also famous for their headaches. I guess if they had stayed in Scotland you would have a little more company Persephone http://dinet.ipbhost.com/style_images/1/fo...icons/icon4.gif. However before they got to Scotland they were Vikings. I hope your parent's appointment goes well.

I do this thing that is probably different from what you are talking about but I go into the dry heaves when standing too long or even just standing up. Along with the dry heaves goes near syncope. The only solution when I feel it coming on is to lie on the floor until it passes. In my case I believe it has something to do with high norepinephrine levels. When I was on cymbalta and my supine ne levels were almost 600 I had these attacks every day some times more than once a day. When I got off of cymbalta and my ne levels dropped the attacks became far less frequent.