andersondebra

HI Bren, Please don't worry so much, and I know that is easy for me to say, but I have spent almost 20 years as a hospice nurse and dealt with all kinds of people with cancer and chances of it being cancer are probably low. One thing that you may want to have your doctor check if they have not already is Bells Palsy syndrome. This can cause exactly what you are describing and it can just happen out of the blue. It is also seen quite frequently with people who either have dysautonomia or just before the onset of it.From my understanding there is no known reason for it, but on the positive side it does go away and usually is more scary than harmful. I do believe that one of the treatments is steriods, but you can look it up. In some instances it can be caused by an underlying auto-immune disease or in rarer cases it can be an auto-immune disease itself. I would say you should look it up to learn more about it and then you may want to ask your doctor to check you for it. But in any case try not to worry so much, usually if it is cancer there are many more signs than just the numbness even with lymphoma, I think you would have had many other issues before this symptom, things like swollen or painful lymph nodes, flu-like symptoms that didnt go way, definetely fatigue (usually pretty severe too) headaches and if it was lymph nodes near the neck there would be teeth pain that would make you feel like you had one really bad tooth ache! So, I am not sure if you have had any other symptoms than what you are describing but if not then please dont be so scared. I hope this makes you feel a little less scared, but I know how looking things up can freak you out, trust me even as a nurse myself I have gotten sick and known pretty much what was wrong with me but then I go and look things up (the worst case scenario of what I am feeling) and then I freak myself out. right now I am doing the same thing with a really bad sinus infection that is not acting like a normal sinus infection and so I am scaring the begeeses out of myself thinking that this may be encephalitis, which is stupid but I am like this, so focusing on your problem right now is making me come back to reality. Just hang in there, I know this can be scary but you will get your answer soon. my best to you Debra

Hi, I can't believe that someone brought this up right now, you see I just got hit with an unbelievable sinus infection and need to go on antibiotics, which scares the heck out of me b/c back in 2007 I took some clindamyacin for an infected tooth and within 3 days developed c-diff. Unfortunately, several months of flagyl never cleared mine and then I was put on vancomycin for almost 7 months straight. It still never cleaned it up and I went from 142 lbs to 79 lbs in the first three months. I was repeatedly hospitalized and then put on a TPN feeding line. The doctors were looking into doing a bacteria colon transplant when an infectious disease doctor said that there was a new drug on the market that treats IBS but they were seeing a small amount of drug resistent strains of C-diff (which is what mine was considered b/c it never responded to any of the drugs) respond to this drug. So, I was put on Xiaxafen and within two weeks I had finally conquered the bug. In all I was infected for 11 months. I would then three months later for no reason at all break out with it again but again it cleared right up with xiaxfen. one month later again I got hit for no reason but again it cleared it right up. I have been c-diff free since, but have not had to use antibiotics since. Now I have no choice but to use them and I am scared. My GI doc has been made aware of it and is also starting me on xiaxfen, so we will see what happens. I also have been on three different probiotics and Keefer since the beginning with this bug and eat one activia a day, so we will see what happens. Mine unfortunately, is one of those horror stories, but I was found to have a drug resistent strain and I was eventually dx as being colonized, which means I can have it sponatiously re-occur for no appearant reason and using antibiotics ever can bring it back out. The scariest thing is that I am afraid one of these days it will become resistant to Xiaxafen too, and then I do not know what they will do. And living on a TPN line like I did for 9 months was horrible but it kept me alive. I was fortunate b/c 22,000 people die each year from this bug. My heart goes out to you and hope this drug works the first time around and bless you for having the strength to get on a plane and travel. For me it was all I could do just to go back and forth to the doctors. My best advice to you is don't forget to bring your meds, take them as prescribed and take all probiotics, I would also keep your doctors number with you incase you have any problems while away. One last thing, this is HIGHLY CONTAGIOUS, so make sure you wash your hands repeatedly, wash all underware in boiling hot water with bleach if you have it, and make sure to scrub your bathroom everyday with bleach or ammonia. If you are not very -very clean about this stuff you can re-infect yourself or others. When washing your hands do not use the hand sanitizers you must wash with soap and water because the hand sanitizers do not kill this bug. Trust me I gave it to my husband by accident during the 11 months that I suffered with it and that is when the infectious disease doctor explained all this to me and my family. I hate to say it but you should have nothing to do with helping to make food this holiday, b/c even if you think you have washed well all it takes is one cyst which is smaller than the head of a pin to be left on your hand somewhere and you will spread it to others. I know it sounds sick but this is how it spreads in hospitals and nursing homes, so please be careful. My best to you and hope you are able to enjoy your holiday meal. Debra

Ok, I want to make people aware of a rare side effect of Metroprolol. Please let me stress here that it is rare, but something that people should be aware of. Let me tell you how insidious this side effect creeped up on me and nearly took my life. I started on Metroprolol about one month ago after Bystolic did not agree with me. When I first started on it I seemed to have no problem or at least I thought so. The first week of taking it I started to have acid reflux after eating a meal, but did not think much of and attributed it to stress of the illness and possibly over eating. By the second week the acid reflux really started to get bad and I was having reflux even without eating. I was also beginning to notice that I was getting nauseated, but again attributed it to the dysautonomia, which I do tend to get when in a flare up. By the third week the nausea was now getting so bad that I was reaching a point of not really being able to eat or sleep. I knew at that point that something was probably not right and I needed to call my GI doc and get seen. So, I called and was told that I had to wait a week to get in to see her. At the beginning of the fourth week I was now noticing that my stools (sorry for this part but it is important) had now turned pale white or like the color of concrete or clay. the nausea was now so bad I had stopped eating and the acid reflux was out of control. I was also noticing that my fatigue which can be bad during dysautonomia flares, was now really bad. I also was beginning to itch all over and have terrible headaches and severe stomach cramping. I was really sick but still could not get into my doctor for another day. Finally, yesterday I had my appt. after explaining all my symptoms and my doc doing an exam, she became very concerned. She told me that I needed to have my blood tested right away and i was not to go home until she seen the results. So, off to the lab and then back to her office to wait for the results. an hour later she calls me back in and tells me that my liver is in failure, which is why my stools are white (b/c you need the bile from the liver to help digest the food and give the stool its color) it also was why I was itching all over (the toxins that the liver clears out of the system was now backing up and seeping into my skin causing the rashes) The fatigue was because my body was becoming toxified from the liver not being able to do its job and clear out all the bad stuff. That was also the reason for the headaches. I did become weak at hearing this and had to lay on the table so as not to pass out. Then I asked why and what is going to happen to me? She said we needed to find the reason and we needed to start with an ultra sound right away to see if the liver was damaged or if the bile duct was clogged and not allowing the bile to get through, so off to ultrasound right then. Two hours later my doc calls me back in and tells me that the liver actually looked good other than some minor damage probably from what was going on now. The bile ducts were also clear. So, what was it and how do we treat this, I mean I do not want to die! she tells me that we have to figure out what is causing it in order to treat it. so, the next step was to get more blood tests, check for hepatitis and toxins and go over everything I was taking (meds) and everything that I may have been exposed to (chemicals). So, we started with my meds and there it was, the metroprolol has a rare side effect in a small percentage of people, actually this whole drug class carries this risk. Matter of fact if you look up the serious side effects of this drug it actually lists the pale stools, nausea, and stomach cramping and vomiting as a symptom that you need to contact your doctor about right away, because it can be causing liver failure. So, off to the lab again for more tests. This time the tests come back showing no hepatitis but a toxic liver, BINGO! we had hit on it. so, the treatment is first to stop the med immediately and then to drink plenty of water to help push the drug out of the liver. I am also taking enzymes right now to help digest food and only eating small amounts of soft food right now. I am also taking Zofran for the nausea. Now it is a waiting game to see if the liver comes back "on-line" and if so, how much of the liver comes back. although, my doc thinks that I will probably regain full liver function b/c I was not on it long enough to do extensive damage. I can already see today that I am beginning to feel better, the nausea has improved by 25% . I expect each day I will begin to feel better and better. I have been told that this could take up to a full month to fully recover b/c my tissues need to rid all of the toxins as well as the liver and all the undigested discolored stool will need to pass. In other words I will more than likely recover, but I wanted to let people know that this drug class does carrry this very serious rare reaction and I wanted to let people know how silently it started, so as to not really know what was happening to me. If anyone begins these drugs and begins to notice symptoms like this, please talk with your doctors right away and do not try to attribute the symptoms fo your dysautonomia, stress, or something that you ate. If it lasts more than three days call your docs and talk to them. It may be nothing but then again it may not be. Debra

Issie- I did not mention Wellbutrin in my last post but it is also is a drug that amps up the adrenaline in your system, that is why it is used to treat people who are trying to quit smoking, because that extra adrenaline can by pass the nicotine affect that you suffer with when trying to quit smoking. It is also another drug that is highly highly disreguarded for people with heart arythmias, cardio vascular issues, BP issues also and pheo people. I actually believe that it has a boxed warning for these people not to use this drug at all, so I am not surprised that you had such a horrible reaction to it. Normal healthy people suffer with tachy on that drug but their bodies can get used to it in time, for people like us it can be very detrimental.

HI, I was dx with SVT the atrial type after wearing a 30 day event monitor. I was also dx with hyper dysautonomia and there is a difference. My cardio doc showed me on the ticker tape the difference. When you are having SVT you will see the heart rate go from beating at 80 bpm (or whatever your normal rate is) and then the next beats jump right up to 165 or higher and they can stay there for seconds to minutes to hours and then just like flipping a light switch you will see the heart rate go right back to the 80 bpm. On a ticker tape is looks like someone is turning on and off a light switch. Now when looking at the ticker tape with dysautonomia you will see the heart rate go from 80bpm and gradually climb as the adrenaline in your body begins to amp up and you will see within a minute or two or three the heart rate will build up to the 165 bpm or higher and when the adrenaline surge is over (for most of us it is when we stop and sit back down) you will see the heart rate slowly drop back down within minutes back to the 80bpm. That is how they tell the difference between dysautonomia arythmia and having a true seperate arythmia. If I could show you a graph of heart beats it would show for SVT this nice little up and down of the heart beats usually going no higher than your normal rate around 80bpm and then you will see the next little spike up go straight up to 165 bpm and stay up there until it is over and when it is over you will see the spike just drop right back to 80 bpm. but with dysautonomia or POTS you will see the the up and down heart beat around 80 bpm and then you slowly see the next beat go up to 90bpm and then the next beat goes up to 105bpm and then the next up to 120bpm and so on until the heart rate gets up to 165 bpm or higher so it looks like this hill is building, and then when it is over you will see this decline happen where the heart rate goes from 165 or whatever it is up to and then it drops to 150 bpm and then the next is at 143 bpm and so on until it gets back down to the 80bpm. So there is this slow build up and then a slow come down as opposed to a straight shot up to the 165 and then a straight shot down to 80bpm. I hope this makes sense to you. Now my cardio thought the same thing at first, he wanted to go in and do an ablation, but before doing it he consulted Vanderbilt who told him that this would not be beneficial for me and could actually make things worse. We decided to not do it and instead we try to treat me with drugs. I know that Vanderbilt has done extensive studies on ablations and dysautonomia and with all of their studies it has shown to be a detriment and has caused more severe reactions in the dysautonomia and in many cases been shown that more than one ablation will be needed to even attempt to control the SVT, so it is highly not recommended in people with dysautonomia or POTS. One last thing, you can have a TTT when you have both SVT and dysautnomia and they will be able to diferentiate the two. This is because as you are on the table they will see as I explained above this building adrenaline reaction which is definetely POTS or dysautonomia, but if they see a spike from 80bpm right to 160bpm or higher than they know that it is being caused by your SVT. If it builds up then it is dysautonomia or POTS. You will eventually learn the difference between the two by the feeling in time as well. If you are totally feeling normal and then just feel your heart take off like a bat out of you know where, and you begin to feel breathless and then for no appearant reason it just stops, that is your SVT, and it can happen when you are sitting doing nothing like watching tv or talking to someone or it can even wake you out of your sleep. It can also happen while you are up doing something as well but you will know the difference because with dysautonomia or POTS it is a build up to that point of feeling. So, you are walking and begin to feel your heart getting faster and slowly you are becoming shorter of breath, but then you sit down and within seconds you begin to feel your heart slowing down and you can catch your breath again, that is dysautonomia or POTS, so you will become aware of the difference. Now just because you can catch your breath and you no longer feel your heart racing it does not mean that you will still not be left with dysautonomia symptoms like a headache or blurred vision or feeling foggy, etc... this is your dysautonomia or POTS symptoms that can be left after an event with either the SVT or the dysautonomia, and that is b/c SVT will spark off your dysautonomia symptoms, so what I am saying is that you can not just rely on your symptoms to say whether you just experienced a SVT or a dysautonomia event. You have to pay attention to the heart rate and the feeling of breathing and how fast it came on and whether you were able to head it off by stopping what you were doing or by sitting down or lying down. With SVT none of that kind of stuff will work it will end when it wants to but with dysautonomia that will work, at least for the heart rate and breathing but not for the other dysatuonomia symptoms. I hope this all makes sense if not PM me and I will try to explain it better. Your doctor should also be able to tell the difference between the two by just asking you some simple questions, such as "did sitting down, or lying or stopping what you were doing resolve the situation within minutes?" or "asking you "what were you doing at the time when it started and was it all of a sudden or did it take a minute or two for you to get to that feeling?" These kinds of questions can indicate to your doc which one of the problems you were dealing with and whether the drugs they are using for that problem are working. I hope this helps you to understand and you may want to ask your doc to show you the ticker tape of the monitor so that you can see the difference in the two. But I would be very careful about any types of procedures to fix the SVT. Debra

I am so happy for you! I too went into a remission for about a year and a half, and just this past summer got hit again. My remission was around 80% and I loved it, I thought I would never deal with this again, but here I am. This time it seems to have hit me a lot harder and I am for the first time having more trouble trying to find a drug or combination of drugs that work for me, so I am feeling a little hopeless right now, but I have to keep reminding myself that I got better last time and it will happen again. I too like others on here can not tell you how I went into remission or how I have come back out of it, but it did happen. My advice to you is stay positive and just keep thinking that will last forever. However, listen to your body, when you feel tired or like you are pushing yourself to hard to fast back off and rest. But most of all enjoy each blessed day that you are free of this illness. congratulations! Debra

Hi, I tried cymbalta and wound up in the hospital for two days suffering from superventricular tachy. It was a huge mistake for me, but I am also unable to tolerate any type of epinephren, even in dental shots to numb the teeth. It would send my heart racing over 200 beats, so it was a poor choice for my doc to try cymbalta. SNRI contains norepinephren (hence the "N" part of SNRI) which is what supposedly helps with pain (just like in a dental shots) but it also helps to pick up the mood by giving little bursts of ephedrine (a form of adrenaline) to the body, which lowers pain and boosts moods. However, anyone who has heart arythmias or suffer from tachy events, pheochromocytoma, or who have allergic reactions to epinephren or adrenaline should not be prescribed this drug and if it must be prescribed they should be started on the lowest does possible and titrated up and they MUST be watched closely when using this drug. This same problem is also seen with Buprione (Buspar), which is an anxioltic drug, which means it is specifically used for anxiety, it is less effective for depression unless the depression is caused by PTSD or anxiety. It's major side effects are racing heart and heart palpatations and it too suggests not for use in people with heart arythmias, cardiovascular issues, or Pheochromocytoma, so these drugs need to be used with caution. Now each of us may suffer from the hyper type of pots but we all may have different reasons for our hyper POTS, and we all may have different types of triggers, so it may do very well in some of us and be very harmful in others, but you will never know until you try it. However, it has been seen in people who suffer from any types of Dysautonomia or POTS, that they are more sensitive to drugs and should always be started on the lowest does possible and then titrated up as long as the patient can tolerate it, You can find all this information by googling the the specific drug, its side effects, and adverse reactions.. I hope this is the answer for you as it seems to be for others on here, I am still looking for my miracle drug, but good luck to you. Debra

Hi Everyone, Well, I was on Bystolic for almost a week and I noticed two days ago that my left leg was swelling up by the end of the day and becoming very painful, I was also suffering from terrible fatigue. I thought I just needed to get used to the drug but then this morning I went to the pharmacy to pick-up prescriptions and while standing at the counter asking the pharmacist about the side effects of this drug and the problems I was experiencing, I began to feel very ill. My heart took off like a bat out of "you know where" and I became nauseous, sweaty, and then there it was, the dark black hole, my husband said you could see my eyes roll back in my head and the blood and color drain from my face as I went crashing to the floor. I was unconscious for about 3 minutes. Needless to say the ambulance was called and off to the ER. My BP was 90/62 and my heart rate was weak and slow at 42 bpm. They gave me a bolus of saline on the way to the hospital trying to raise the BP and HR. I got to the ER and now my respirations were below 7, so the monitors were going off, but the BP was slowly going up with the saline input and the HR was getting stronger. I was put on O2 and monitors and watched, but everything came back to a low norm. They contacted my cardio doc who agreed with the ER doc that this was a reaction to the Bystolic and I needed to come off of it. It was now crashing me at all levels, BP, HR, and Resp. After several hours the ER let me go and I now have to follow-up with cardio doc. However, I am still feeling like yuck, but for the first time not from everything being so high but just the opposit, everything is to low, this ***** just as BAD!!! So, I am now back to the wheel chair and waiting to see my doc to see where we go from here. I am very sorry to report that this drug caused this reaction, I was really hoping this was the "miracle", but I have learned from the past not to get my hopes up until I have been on it for a couple of weeks, b/c this is not the first time that something like this has happened after several days use of a drug. Anyway, I will let you know where I go from here. Right now, I am feeling yucky and very depressed, have spent most of the afternoon crying especially after the ER and my doc gave me instructions to return to my wheel chair until further notice and instructed my hubby not to allow me to get up from it with out someone being there to help and watch me. It has been a bad day, and right now I am just hoping that tomorrow will be better. Debra

Firewatcher- I missed putting this in my last posted response to you, so I wanted to let you know that I am very sorry to hear too that you are now suffering from "collateral damage" the kidney failure. Are you being treated for that and since your dysautonomia is not fully responsive to treatment will this issue continue to get worse? I know how scary this must be for you, b/c when they did my echo two months ago and came back with their findings and the doc said high-output heart failure, all I heard was heart failure and I began sobbing uncontrollably. Once I got myself under control and started asking what all that meant, and he began to tell me of the specific damage done to the heart, I was shaken, (to tell the truth, I am still shaken by this and very scared for what this means to me down the road especially with already having the vascular form of EDS) My doc was very good at explaining it all to me but also followed-up by saying that once the damage is done and the wheels have been put in motion there is no turning back. The best that we can hope for now is to try and control the BP and HR so as not damage it any faster, but with the EDS and the amount of damage already done it is causing my heart to have to work extra hard to do its job and so in the long run it will shorten my life span and possibly cause me other more serious complications down the road. However, I will tell you that b/c i had to see a psych doc to determine if this was pseudopheo I have decided to continue with psych treatment, basically taking no meds, just so that I can deal with the dx and what this means for my future. I also know that my kidneys are the next to see damage just b/c the heart is having to compensate for the damage and supposedly this will eventually effect the kidneys and lungs from what I have been told. I am scared by all this, are you too? YOu can PM me if you'd like, but I am interested in how you are handling this, also interested in how they found the damage to the kidneys, or at least what lead them to look at your kidneys. I have been having problems with blood in the urine but figured I would take care of this matter after getting the heart issue settled, now that it is somewhat settled I will go back to my primary doc and we can go back and see why there is blood. However, I have no other symptoms, the blood was found on two urine tests and it was only a small amount, so nothing that my doc or I felt was urgent to deal with, but definetely something to look at in time. You know it is upsetting that so many docs are so negligent when treating people with dysautonomia or POTS, because they feel as though it will not kill us, but as you and I have found out it will shorten your life span and make for other more serious problems. I wish all docs took this dx seriously and wish that drug companies and doctors would do more into research for treating this illness, b/c there is collateral damage besides the altering of your life. My heart and prayers go out to you. Debra

Firewatcher- You sound like me, I was the same way low BP's and HR's when lying down and high HR's and BP's when getting up or getting physical. Even sitting down and trying to blow dry my hair would send my BP up into the 170's over 110 with a HR of 165, so just getting physical would set mine off too. As far as trying to walk anywhere, even just going from my bedroom to the bathroom would send me off the charts and leave me with a pounding headache, blurred vision, tremors, breahlessness, and feeling faint. I too tried propanolol but it did not work at all then I was tried on aldomet but could not tolerate it and then on to topral which I was like you on the propanolol. It would give me minor relief when getting up and walking a short distance, but anything more than that and I was right back to where i started from. I too also needed to have it out of my system before bed or my BP and HR would drop very low. I am so sorry that this drug did not work for you, so far it has worked with allowing me to get up and walk far, blow dry my hair, clean my house, etcc. and it is not making me go to low when I am down, but again I am only into my third day, so we will see how it goes, but I got my fingers crossed. I really hope you find something that works better for you, b/c I know what this is like. I was really hoping that with my good news that I could maybe help someone else out there in my situation, that did not know about or has not tried this drug, but I hope you find something better than propanolol to allow you to get your full life back. Oh and hey is Vandy not a great place? I love them I had Dr. Biaggioni and he was so caring and comforting to me, b/c I was a mess when I first showed up in their hospital, but he gave me hope yet helped me to realize the reality of this illness and still treated me with such compassion that I think that is what got me and my family though this. Naomi- yes you are right it is like baroflex failure. You see we all have some form of dysautonomia but each one of us may have it for a different reasons, b/c it may be that different areas of the autonomic nervous system have gone haywire or been damaged by some underlying disease or illness. That may be why some of us are the same yet still have somethings are a little different. And to answer your question abou the dizziness, YES- YES it has helped my dizziness, my dizziness was one of the worst intolerable symptoms for me,(that is why my user name on here is dizzyizzy, LOL!) And that was one of the first things I noticed with this drug and then I realized that my head was not hurting anymore and then it dawned on me that I had not had one episode of tachy or adrenaline surge since starting the drug, so yes it has helped with all the autonomic symptoms, and supposedly that is because my brain cannot send out the messages for more adrenaline on this drug, so not only is my BP and HR not reacting to all the adrenaline but the rest of my body is not reacting anymore either b/c it is not making the adrenaline, which may be why I am also feeling so exhausted but I will talk with the doc tomorrow about that.

Yogini- I went to Vanderbilt to get dx first, and they ran al their tests, and then dx me with Hyperadrenergic dysautonomia, but all the dysautonomia tests showed them that there was an autonomic problem but the specific tests that were done showed the docs that there was no damage to my autonomic nerves, which meant that the problem causing the dysautonomia was not coming from the autonomic nerve endings, the problem was coming from the autonomic control center in the brain, which is known as the cerebral vascular center. This makes a big difference in treatment and possibly the cause of your dysautonomia. You see if your tests come back showing that the nerve endings of the autonomic system are damaged then the docs need to be looking for a possible cause of nerve damage, things like Pure Autonomic failure, Famialia Autonomic, MS, or auto-immune disease, in those cases then a neurologist or other specialist needs to get involved and there may be other forms of treatment that are needed to control the under lying disease that is damaging the nerves. However, if the tests show that the nerves are not damaged and causing the autonomic issues then the doctors look to the autonomic control center as being the cause, which brings you to the cerebral vascular center of the brain. This dx is a hard one because the medical community does not know wnough about the brain and how it works to really be able to effectively treat dysautonomia when the brains control center is "broken" or "haywire". This makes finding a drug or regime of drugs a hit or miss experiment, with each person being different. Anyway, when I was dx my tests showed that there was no nerve damage even though I have EDS, so my problem was the control center. So, what happens to me is I have low blood pressure when sitting or lying down, but as soon as I get up my BP and HR go up, like it should, that is the bodies normal response to gravity and activity, but in a healthy person within seconds to 3 minutes the BP and HR should steady off and even drop back down to a normal level, but for me my cerebral vascular center does not have the ability to shut of the adrenaline response needed when getting up or getting physical, so my BP and HR would just keep going up and up and up to extreme levels. Now when I say extreme levels I am talking about BP's that get well over 200's on the top number and up to 130 for the bottom number with HR's that get up to 170 and even into the 200's. It was so bad that when they did the TTT I not only went unconscious but also stopped breathing because my heart rate was so fast that the heart was unable to fill with blood and oxygenate it and send it to the lungs and brain. This happend to me every time I got up and I mean everytime. I was in the University of Chicago Hospital when this was happening and the docs there called around to other university hospitals in the area to see if anyone knew of this kind of thing, all the other univeristy docs were pointing my docs to Mayo, or vanderbilt. So, after talking with docs from both institutions it was decided that I needed to be at Vanderbilt and so that night I was air lifted to Vandy because they said that I could not make the drive with these levels. I spent two weeks at vandy going through a butt load of tests, when they finally came back and confirmed that I had hyperadrenergic dysautonomia that was being caused my the cerebral vascular center of the brain, another words the control tower went on vacation! I was told that this was the hardest dx to treat and had the least good results and they figured it was probably caused by my EDS, but could not say for certain. Anyway, I was started on treatment and within 9 months I had gotten better. Then for what ever reason I got hit again this summer and was right back in a wheel chair and dealing with the problems all over again and this time the meds were not working like they had the last time, so my doc here was convinced that it was this pseudopheo thing, but I have since found out that it was not. The new doc I am seeing choose Bystolic over topral for two reasons, one was that I was on it and it was not lowering the BP or the HR, my numbers again were extreme and now the echo showed that I was in the beginning of what is known as "high output heart failure" this is where the diastolic number is extremely high but the top number is high but no where near as high as it should be incomparison to the lower number it also means that my HR is staying well above 165 and damaging the vascular areas and the heart. The echo showed that the left ventricle was badly damaged and the heart itself was enlarged all of it due to the extreme BP and HR. So, we needed to get me off of the topral because the topral does not stop the cerebral vascular part of the brain from sending out the signals to up the adrenaline, all it does is it tries to block the heart from responding to the amount of adrenaline that it is reacting to, but because my "control center" (the cerebral vascular part of the brain) was sending out extreme amounts of signals for an extreme amount of adrenaline, the topral could not counter act it, and so the heart was still reacting to the adrenaline therefore leaving me without any real control over the BP and HR. So, he choose the Bystolic because its pharmacolgical make-up works differently then the topral or other beta blockers. (you see most all BB just work to stop the heart from reacting to the adrenalin, but do nothing to stop the brain from making the body put out all of the adrenaline) This is waht makes Bystolic different than other BB, becuase instead of trying to control the adrenaline surges at the nerve or heart level it tries to control the adrenaline surges from the command center the cerebral vascular part of the brain, which happens to be the "broken" part which causes my dysautonomia. So, now the "control center" is no longer sending out the messages therefore I am no longer having adrenaline surges because my body is not making all the adrenaline, so my heart has nothing to react to anymore, for that matter the rest of my body does not have anything to react to anymore either. Also I think it is important to know that this drug does work on lowering BP, it actually lowers BP sometimes to dangerous levels, b/c one of the boxed warnings with this drug is that it can and has been known to cause heart attacks or MI's because it can bring the BP so dangerously low b/c of that problem with this drug it states that a person should be started on no more than 5mg. and titrated up every two weeks so as not to crash their BP and vascular system. This drug is not meant for only tachy with low BP, it is bascially meant for people with very high untreatable BP's and possibly have tachy as well. This may be why it is used so little, and because of the way it works may be the reason why it is one of the newer BB that most docs do not use. One last thing b/c this drug stops the adrenaline receptors from the brain level, it has a very serious side effect of death due to heart failure b/c if the heart starts to fail and needs the brain to compensate by pushing out adrenaline to keep the heart going, the brain on this drug does not have the ability to send out the signal for more adrenaline to help the heart out. All this means that if you went into cardiac arrest drugs or the paddles will not save your life if you have been on this drug b/c it will prevent your brain from compensating with large doses of adrenaline which are needed to get the heart going again. The one thing my cardio did say is that if I wear an ID bracelet that says that I am on this drug an ER would know to start attempting drugs that are antogonists to help by bypassing the cerebral vascular response of no adrenalline on this drug to help my body to produce the adrenalline needed to restart the heart. Also because of this effect anesthetics are out of the question for the same reason and can be fatal when given without the brain being able to send out signals of adrenaline when needed. So this is not a drug to be used in people with low BP or for people who could be better controlled on other BB. This drug was specifically made for people with uncontolable high BP that is life threatening, you can even read this in the literature. I hope this makes sense, I tried to explain it how it was explained to me by both Vanderbilt and my new doc. So there is no cerebral vascular vs. autonomic issue, they are one in the same, it is just the different parts that make-up the autonomic system, with the cerebral vascular part being the autonomic control center and the nerves and heart being the end result of the control centers out put. I hoped I also explained why bystolic was choosen over Topral and other BB that have not worked for me in the past, and yes you are right that each person reacts differently to the drugs so if you have not tried them how would the doc know, except for two things, one I had been tried on them and they failed and two docs do know how the drugs work because they have the pharmacological make-up from the drug maufactuer which tells them how the drug works by telling them what the drug works on and how it changes it, such as the difference between other BB working at the heart level to block the heart from responding to the adrenaline surges as opposed to bystolic working at the brain level and stopping the brain from producing the messages for an increase in adrenaline. So, with knowing that pharmacological knowledge and with the knowledge of what area in my body is "broken" and causing the dysautonomia, the doc was able to narrow down which of the drugs would best work to control my problem. I hope this all makes sense, anyway, so far I am doing well for the first time in a longtime and I am most happy to be out of my wheel chair again and doing things for myself, without causing myself anymore damage or icky symptoms. Debra

Lieze- you are so right, in your last posting, and no the psych doc was not going to report back to the cardio doc, but it is in her report and I WILL be sending it to the cardio doc. However, he had such an attitude that I do not think he will think much of it, he was one of those "I am the doctor and I know all and you are the patient and you know nothing", arrogant types, so I do not think this will phase him or make him think twice. I wish there was a way that we could report to a national site doctors who are like this, so as to warn others not to see this type of doc, maybe then these docs would get the picture and change their ways.

You may all be right, that this drug is not so new, I am not sure why this doc said this to me, or why the pharmacy had to order it, but for those of you who have not tried it, I would look into it. Now maybe it won't work for everyone like it has for me, but maybe some of us can find some relief. Firewatcher- I am sorry that you are having so many problems and that this drug did not help you, I hope you find the drug or combination to help you get better, soon. Sue- I was like you too, I have been on several different BB and aldomet and either could not tolerate them or they did not work, some just lowered the BP but never touched the HR and others were vise versa, but so far this one seems to be controlliing it all, but I ahve only been on it for three days, so we will see longterm how this is going to go, but for me this is a really good start.

Hi, Are you sure it was Bystolic because the doc told me it was brand spanking new and my pharmacy, which is Walgreens, has said that they have never heard of it and they would have to order it for me, so are you sure you it was bystolic?

For those of you with the hyperadrenergic type of dysautonomia or POTS please read my posting "Follow-up to pseudopheochromocytome and new drug" because I explain about a brand new drug that just came out on the market last week that works unbelievably for our type. I do not want to write it all again so check out my posting, becasue I do not want you to miss out on this new info. If you have any questions please feel free to ask. Best wishes, Debra

Hi, Well I said I would keep you informed about the pseudopheochromocytoma dx after visiting with the psych doc, also got into the new cardio doc ahead of scheduled appt. So, here is the news, the psych doc said that this was NOT pseudopheochromocytoma, she said that if I had that then I would be having attacks, much like panic attacks that would come and go and it would be inconsistent. However, I am not having attacks that come and go nor do they look or act like panic attacks. For me EVERYTIME I get up or get physical my BP and HR go up as they should except that they do not stop going up nor do they steady off at any certain point, which leaves me with climbing BP's and very fast HR's that are extreme and have now caused irreppable heart and vascular damage. Also I do not show any signs of panic, because I remain calm, but sweaty and breathlessness from the tachy. So, this dx was way off base. I then was able to get into see a new cardio doc right after seeing the psych doc. This new doc is new to me but not to my family. He has taken care of my mom, uncle, cousins, etc.. most of the family who have had EDS vascular problems. So, he knows the family history with EDS and has watched most of the family die from vascular, aorta , or organ ruptures. Anyway, he has not dealt with dysautonomia with any of them but was willing to see me and now that there is vascular and heart damage due to the extreme BP's and HR's he felt it necessary to continue to watch me closely, so he got me in right away. Anyway, he listened to what I had to say and examined me, even gave me the orthostatic BP exam. He then said that I definetely had hyperadrenergic dysautonomia, but felt my problem was not with my autonomic nerves, but instead with the cerebralvascular control, meaning it was coming from the brain. He said with that being my issue that topral would not control the BP and HR, which it wasn't. It worked great if I just stayed sitting down or had to get up for a quick walk, but anything more than that and my BP and HR would go through the roof. So, he told me about a brand new drug that litteraly just came out on the market, it is Bystolic, and it works at the cerebralvascular center of the brain, so it stops the brain from sending the message to up the adrenaline, as opposed to topral which does not stop the brain from sending the message and from the glands sending out the adrenaline, topral just stops the heart from reacting to the adrenaline, but will not stop all the other dysautonomia type problems because the adrenaline has been released into the blood stream and is setting everything off and if the body becomes to over run with adrenaline the topral is unable to block the heart from reacting to such a large amount therefore the heart will still react, giving me high BP's and HR's and all the other dysautonomia symptoms.. Anyway, he gave me a trial bottle and a prescription, but the pharmacy had to order the script because it is so new that they do not have it in yet, so I am using the trial bottle he gave me. I have now been on it for three days and I am happy to report that I am no longer in a wheel chair, my BP's are not getting higher than low 100's on the top and high 60's to low 70's on the bottom, and I have not had one episode of tachy!!!!! NOT ONE!!!!!! I have not had one adrenaline surge since starting the drug and I have done everything, from cleaning my house to taking a walk with my dog. Now this is all great but, (yes here is the but part), my ankles have been swelling up and hurting really bad by the end of the day, and I feel exhausted all the time, now I am not sure if this is due to my over doing it since I have been in a wheel chair for 2 months straight or if it is the drug, but I will be calling the doc on Monday to inform him and I will keep you informed. Let me just say one more thing I am not suffering with dizziness, blurred vision, uncoordination, brain fog, or any other symptoms of dysautonomia or side effects that topral caused, so It seems really great other than the two things I am experiencing. This drug has little to no side effects as the other drugs do, so that is a big plus, but like I said I will keep you all informed. This brand new drug may actually be the answer for people who suffer from hyperadrenergic dysautonomia, and the reason why is because it works specifically on the part of the brain that causes the hyper type, as no other drug out there does, so it stops it before it even happens. I hope this gives hope to all of you who suffer like I do, please check this drug out and ask your docs about it the next time you see them, it is definetely worth it, and like I said it is brand spanking new, so new that the pharmacies do not even have it in, and some docs may not even know it exists yet, so check it out. Best wishes, Debra

Naomi and Maia- Believe me I am looking at seeing another cardiologist, but I cannot get in to him until Oct. 12th, so until then I will go to the psychiatrist only because I want to know what he has to say about this dx, which i agree sounds like a pile of " I don't know what the **** is wrong with you crap", but they have run every test imaginable and can find no reason why my body does not regulate the adrenaline upon standing or getting physical, so I don't know what to think either. I have had hypertensive emergencies which is what brought them to thinking of the pheochromocytosis dx but when tested for it, it was negative, so that left them with this pseudo dx of pheo, because it is the only other thing that they can find to fit it. So, I will go see the psych doc but also going to see a new cardio too. Look-up pseudochromocytoma and you will see it sounds alot like me, except that my problem is not just attacks that come and go they are all the time, so I don't know what to make of it, I guess much like the docs. Leize- So, you are much different then me. YOu are able to walk and do things, which I am unable to do right now and your symptoms come and go where mine are constant and my vitals are never good and that is the reason why there is now heart damage and I could not live without the heart meds b/c without them my BP and HR would go through the roof and will not come back down, which can lead to a major stroke and more heart damage, so there is no choice for me. Besides I do feel better on the heart meds, it takes the headaches down a couple of notches and makes it easier for me to breath. Anyway, I hope you find out what is wrong with you and I hope you get better. I will let you know what the psych doc has to say about all this, I see him this Wednesday so I will report back.

Lieze- It kind of sounds the same except that my BP goes up and keeps climbing the longer I stand, on my tilt table test the last reading they got before I past out from lack of oxygen was 223/120 with a heart rate of 178. This was the highest reading I have ever had but they slowly watched it climb as I was on the table and they kept expecting it to come crashing back down, but it never did. Fianlly, I told them that I was nausas and I could not breath, the next thing I remember was waking up on a flat table with a tube down my throat breathing for me. Appearantly I had stopped breathing as well. This whole incident on the TT took all of 4 and half minutes for me to reach that level and stop breathing. Since that test I have had several more occassions of passing out but never stopped breathing again. As of today I can stand for about 5 minutes total and then I can no longer breath b/c of the high heart rate. My BP goes up but if I sit right back down with 5 minutes and take my BP it usually is around 158/110, but it will steadily fall the longer I am sitting down. My usual BP is low it is 90/64 and has been known to go as low as 73/42 while sleeping in the hospital. But for me this happens every time I get up. I do have a wheel chair now b/c my docs are scared of me fainting and or stop breathing. What happens with me is that when I get up or get physical my BP and HR both start going up but they do not stop going up or level off like they should. Once this happens, even if I sit down or lay down my BP and HR will go down but not to where they normally would be and then I get left with a pounding headache, blurred vision, tremulousness throughout my body, a foggy mind feeling, I'm uncoordinated and very fatigued as if I had just run 20 miles at top speed. I also get chest pressure as if someone is sitting on my chest and if I stay up to long or if the BP or HR goes to high I will get a squeezing pain in my chest like I'm having a heart attack and the viens in my neck bulge out and hurt. This only happens with getting up or getting physical, although I have gotten slight quick episodes while trying to fall asleep (especially if laying on my left side) and when sitting on the couch watching tv, but these episodes usually disipate within minutes. The tachy they seen on the halter was a normal sinus rythm so my docs said to that it was nothing to worry about, except for the breathlessness that can come from the extreme hr going on to long. I don't have problems when eating, or when in my wheelchair in a store, but sometimes I can have an episode when my husband speeds up the car on the highway. It is like the G-force sets it off. I was originally dx with hyperadrenergic dysautonomia three years ago at Vanderbilt, but after about 9 months of treatment I got better and for the past year and half I have not had any problems with it. Then around May of this year I noticed that I was getting short of breath with exercise, I went to my doc and he checked me for everything lung related and said that there was nothing there he could not explain it, so I just cut back on my activity and adjusted to it. Then In August we moved and I noticed that while moving boxes ect.. I began feeling heart palpatations and really had shortness of breath to the point of having to sit down. Within three days of moving I was rushed to the ER and was admitted because I was in a "hypertensive emergency" my BP was staying over 200/ 100 and my hr was staying above 165. I was put in cardiac intensive care unit for five days. I was given BP meds through and IV for the first 3 days and then by mouth after that. I was kept quiet and lying down trying to bring the BP and hr down which it did come down slowly over the three days. however, I am now left not being able to get up or walk, even with meds. The docs checked everything again while I was in the hospital but found nothing to show the reasoning why. The only thing they did find was that my heart is slightly enlarged on the left side and I have lost some of the elasticity of the left ventricle, supposdely this is due to the extreme high BP and HR that I have been having but this damage should not cause what is going on. So, they dx me with this pseudopheochromocytoma, which I am finding hard to beleive but we will see, what comes of it with the psych doc. I am supposing if he says no that is not what it is then we are back to probably dx this as another hyperadrenergic dysautonomia attack and we will see how long it lasts this time. OK so that is my story, does it kind of sound like you? from what you have posted I think we have somethings that are the same but somethings are different, what do you think? Also do you ever have times where you can walk or get up without having any problems with your HR or BP and if so is it b/c you are on heart meds? Sorry for the long post, just wanted to put it all out there to see if you and me are somewhat the same maybe between us we can bring more info back to our docs to think about. Thanks, Debra

Sue- I wish my doctor would look for a pheo or para, but he feels as though this is in my head and has sent me to the psych, which is fine I will follow thru with it,but I think he is totally off here and agree with you that if the levels are coming back high than they should be looking for a physical issue. I can tell you that my levels were high both in my urine and blood and my halter showed tachy spikes up to 178 bpm at 1:30am, while I was sleeping, I don't think I was having any kind of attack in my sleep, LOL! My BP monitor which I wore for 24 hours and recorded BP's every half hour showed BP spikes as high a 198/113, while sitting on the couch and watching t.v. and then would go back down after about 20 minutes but would my resting heart rate stayed higher than normal, around 138/100. So, I really -really believe that something more physical is going on. I just can't prove it and my doc won't believe it. So, I will follow his suggestions, but I am looking for another doc. Thanks, Debra

Leize- I know that if I have this dx, that to a certain degree I cannot blame myself, but it is my mind that I let get to this point, so I actually do blame myself. However, I really do not think this is my dx, because my stress was not really out there, I have had way way more stressful events in my life that never brought on this kind of physical reaction. Also like I said, everything that I have read on it, says that the person suffers with attacks, I take that to mean episodes that come and go, maybe even brought on by a triggering event or flashback to the original stressing event that brought it on. That is not me, I have high tachy and BP EVERYTIME I get up from a sitting position or get physical. Lets put it this way, I cannot take a shower without being left gasping for air because my HR is at 165 or higher, causing my heart to not be able to bring oxygenated blood to my lings or brain, and I don't think that taking a shower should set off an attack if my precipitating stressful event was moving,which had nothing to do with showers. You see what i am saying and why i think this doctor is off his rocker? As for what is going on with you, it sounds like you may have some psychological issues that could at times bring on a PTSD type of moment or something like pseudopheochromocytoma, which in that case you may benefit from talking to someone. However, like me if you are finding that you are having these attacks when you do not find yourself in that scary place that your husband put you in before than you too may also still have some other kind of physical issue going on. It is not to say that you may have more than one reason for your illness. but if you feel that you have moments of high stress and anxiety because of what you went through (which by the way I am sorry that this has happened to you) then you should talk to someone, it definetely can't hurt. By the way I am actually going to see a psychiatrist this wednesday to talk to him to see if he thinks this is my problem. I am not afraid to go see a psych doc, I just wan to get better and will try anything. I hope you get better Debra

I have recently come off of hormone replacement therapy again b/c of not tolerating it, it makes my HR go through the roof and raises my BP to dangerous levels. I too have tried every type HRT other than bi-identicals. I need the HRT for several reasons, you see I had a total hysterectomy at age 26 when my uterus ruptured and fell on my colon, and two years prior to that my one ovary ruptured and needed to be removed. I had suffered through years of endometreosis that left everything damaged and I also have EDS, which is what my doctors think was the cause of the ruptures. Anyway, I am now in my mid forties and I am suffering with advanced osteoperosis, and vaginal atrophy due to all the years without HRT.However, I do not suffer from hotlfashes unless I go on HRT and really do not have moodiness unless using HRT. Many of you have posted on here that you have had bad problems to HRT therapy but you guys really have not said what your reactons were and I am curious b/c I want to know if they are the same as mine, so here are my symptoms, please tell me if they are ones that you suffer from too. tachycardia breathlessness (probably from the high HR) hotflashes or bouts of severe sweating (not sure which it is) extreme BP spikes (especially upon standing or getting physical) Higher than normal BP and HR at rest anxiety (could be - being caused by adrenaline surges) Those that are on bio-identical HRT did you have atrophic vaginitis or just hotflashes? and if you had atrophic vaginitis did it get better on Bio-HRT? I have been told that bio-HRT is only good for the hotflashes and memory fog and moods, but does not work on atrophic vaginitis or osteoperosis, I am trying to find this out. If you have had atrophic vaginitis and it got better on bio-HRT? what type of HRT mix are you using? Does anyone know of a HRT physician in IL. around Chicago, Rockford or Northwest area of IL.? Thanks, Debra

Hi, I was wondering if anyone has ever been dx with pseudopheochromocytoma? I seen a new doc who believes that I have this and not hyperadrenergic dysautonomia. I had never heard of this before so I looked it up. It is really the same thing as pheochromocytoma accept that it is not real hence the "pseudo" part. Now when I say it is not real I mean, that you do not have tumor on the adreanal gland therefore diagnosing you with pheochromocytoma, but your body acts as though you have one, causing your BP and HR to go up. Supposedly it caused by some unresolved issue in your life or from trauma, abuse, or stress. The treatment is psych drugs, antihypertensive meds, and psycho therapy. According to everything I have read, when these three things are done simultaneously the person is cured. My docs are thinking this, because this flare-up for me started after a stressful move, but I do not believe they are right because when I looked it up it also states that the person can suffer an attack every couple of months to several times a day, however, I do not think that you can consider it an attack everytime you stand, walk, or get physical. That is not an occassional attack that is just what my body is doing when I get up. I also do not believe that my stress was that over the top and the move is over and yet I am still suffering to the point of needing to be in a wheel chair. So, I was wondering if any of you have ever been diagnosed with this and if you have did you go through the treatment and did it work?

Thanks for all the info I will check all the docs out that you both have suggested. I hope one of them has the times and patience to work with me. Thanks, Debra

Hi, I am staying in Chicago, IL for an unspeciied amount of time (we are not sure how long we will be living here) and I am currently looking for a good doctor in IL. One who understands this illness and is willing to work with Vandy if necessary. I did see an EP Cardio in Chicago the other day and he started off the visit with " Hi, I'm so and so and I understand you have dysautonomia, well I take care of people who have heart arythmias and normal reasons for tachy, but on ocassion a person like you will find their way to our clinic and you really do not belong here, so here we are and what is it you would like from me, cause there is not much anyone can do for you" I immediately became emotional,which was the wrong thing to do because he then went off on a psycho tangent about how I need to see a psychiatrist and find a hobby, because maybe that was my problem. Then of course I had taken my topral that morning and I was sitting so when they took my heart rate I was normal, so he carried on about that. Anyway, to say the least it was a horrible appt. that left me feeling as though I was a nut job being a hypochondriac and right now I do not need this stress because I am in a bad flare. So, I am looking for a new doctor, if anyone knows any in the chicagoland area or its suburbs I would greatly appreciate it. Thanks, Debra

I too, have had problems with zoloft, it not only increased my anxiety /depression but it also increased my dysautonomia symptoms. I did go back and talk with my doc about this and he told me that each of the SSRI drugs work a little differently by working on different selctive pathways, so over all as a group SSRI's carry many of the same side effects but because each one is slightly different you can have increased or decreased side effects that you may not have on another one. So, maybe this SSRI is not right for you and you should talk with your doc about a different form. For me I was not able to tolerate any of them, but have found great relief in the tricyclic group (elavil), my doc thinks it is because i did not need my seratonin selectively decreased, I just needed my dopamine increased. Appearantly I needed all of my seratonin and just need to up my dopamine to meet the seratonin. Anyway, if you are experiencing problems or increased symptoms with zoloft then you should talk with your doc, I would not wait because you know yourself and if you do not feel right or good on the drug then you should tell your doc before things get too bad. I hope this helps and hope you get to feeling better. God Bless, Debra