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andersondebra's Achievements


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  1. 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
  2. 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
  3. 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
  4. 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.
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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.
  11. 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
  12. 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.
  13. 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.
  14. 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?
  15. 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
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