nantynannie

Hi Melaine, What type of burning do you mean? Is it a nerve type of burning sensation or burning accompanied by heat and possibly redness? I have both, I am asking because for the nerve type of burning, it could be your back, like a disc or something and neurontin might help, but you should get checked out. If it is the other type of burning it is caused by vascular problems and there is not much treatment for it. Is it in your feet as well? Many many Fibro people have this burning pain. Ann

HI Sue, Have you ever had accupuncture? It is kind of like that. The needles are very long and thin and if you don't watch, you will hardly know they are there. I saw that someone thought it was painful. I did not find it particularly painful. There was only a few times when they were moving the needle around to listen for a signal that I was at my limit. I guess it is different for everyone. I would not take a pain killer because I do not think it would work and who knows if it would alter the test? Especially an anti inflammatory might alter the test because they are putting the needles into your muscles. I don't really know, but I wouldn't chance it. Ann

Hi Carol, I forgot to say that yes I think you should try to find a specialist. I found one on one of the Dysautonomia websites. I think your idea of calling Vanderbilt is a good one. My doc is a "good" cardio, but he just doesn't understand POTS. He thinks that dysautonomia is only when the BP drops and the heartrate drops at the same time. He gave me the beta blockers and they sucked, so now he is fresh out of ideas (except that he will bet a paycheck that I have a pheo!) You need someone who knows what they are dealing with. Ann

Carol, Hi there! Well I am glad to hear that he agreed that the test was poorly done (to say the least!) My advice is that you go back to the same place (because of money concerns) but insist that a qualified doctor is present throughout the test. Also, make sure they layout the exact procedure before you go in. They should not give you the isuprel until you've gone 30 minutes without symptoms. All my nurse did during the test was write stuff down. The doc was there the entire time. As far as your doc goes, it is my opinion that he thinks your are a nut. This does not really matter because most docs think we are nuts. This is caused by anxiety don't you know? This is an hysterical female disorder. I can assure you that 90% of my docs think I am completely wacko. Fortunate for me, I will soon be seeing a specialist. I think you should get the other test done ASAP while you are off of the meds anyway. Then you will need to find a new doc if he refuses to give you the medication you need. I know this is not easy, especially when insurance companies are involved, but you have tried it his way already. I think you might need a new perspective and a new and improved beta blocker. I am only saying that because you have been on them so long, I am assuming it is an older medication. There are new ones on the market that are much improved. So in short, I would get the test done right away, go back in two weeks and see what he has to say. If he won't give you the meds, then you need a new doc. Ann

RunnerGirl, That was very helpful, thanks! I told my doc that I think I am having an overactive response to a normal amount of adrenaline. He considered this and said it was possible in theory, though he had never heard of it. He does not really understand POTS either. I have an appointment in August with an autonomic dysfunction specialist that I found on the website. Meanwhile, my cardio is CONVINCED that it is a pheo because of the reaction he saw during the test. My tilt results say "Inappropriate sinus tachycardia in response to catacholamine excess with cyanosis in the extremities." I am going for a CT on Thursday. It is just as well for me to do this test and convice him that I don't have it. Otherwise I would have to go you know what in the bottle for 24 hours up to three more times. After hearing from you and others on this site, I am certain that I do not have a pheo. I am interested though in what it is that causes this response. Sometimes at the slightest noise my heart starts racing (when I am not startled.) When the alarm clock goes off my heart races as if I was just shot at or something. It is quite ridiculous. THANKS FOR YOUR INPUT! Ann

Carol, Thanks for the info! I am getting a CT on Thursday for the supposed pheo. I do not think that I have one, especially after talking to so many on this board who have similiar excess adrenaline type symptoms. I just can't figure out why my urine test was negative because I have many symptoms that point to excess adrenaline. What do you think? I CANNOT BELIEVE THAT THOSE NURSES TOLD YOU TO MOVE WHEN YOU WERE HAVING SYMPTOMS!!! I am no doc, but I am quite certain that it effected/affected your test. You should insist on a new test, possibly at a different facility if feasible. They obviously do not know what they are doing. Printout some stuff from the website so that you have something to refer to when you talk to your doc. Maybe he will understand right away that it was not done properly. Also, you should not have to pay for a new test. It should be free. I know this is all easier said than done, but it is worth a try because they definately messed it up. As for the isuprel, my heart rate was too high so they did not give it to me. I guess it is used to induce a high heartrate in the event that you don't have one during the test. Did they give it to you? Sorry if you already answered that one. Ann

Hi Everyone, I just read this post and learned something new! I was not aware that pain is associated with POTS. I have (among other things) a deep aching pain in my joints and muscles that has been attributed to Fibromyalgia. Is is possible that it is autonomic in nature??? Ann

The only thing I can think in regards to bowling, besides what was already mentioned, is carrying the bowling ball might give you extra symptoms. For me, if I even pick up my purse my heart beats faster. Check it out and see what happens! Good luck with it. Ann

Carol, I do not know much about this stuff, but I can tell you for certain that you should not have been allowed to move around during the test. The whole point is to remain immobile because most of us compensate for the BP and high HR by moving our legs and arms around and bending over which can releive/diminish symptoms and help with circulation. The whole point of the test is to have your movement restricted so that you cannot compensate. I had an even more severe reaction than normal during tilt because of this. Did the nurses mention that your heartrate went up? Did it that you know of? Also, the BP every 5 minutes is not adequate. Mine was every two minutes and they did not catch my immediate drop in BP upon standing because it then rises considerably so they assumed that I was immediately hypertensive rather that hypo then hyper. They caught it at the end after 30 minutes when it dropped again. I know there are some places that have continuous BP, but these are few and far between because it is a new technology. I am curious as to your excess catacholamine test because mine was negative despite "excess catacholamine response" during my tilt and my cardio's insistance that I have a pheo tumor. I am sorry that you did not get your typical response during tilt. I was fearful of the same happening to me. I think to some extent we are so afraid of not being believed that we NEED to have these tests come out positive for our own peace of mind and well being. I would explain to the doc that you did not feel as you usually do during the test and ask him to redo it. Also let him know about the moving around. Sorry I couldn't help, maybe someone else will have some advice. Ann

Hi Susan, I have/had VERY SLIGHTLY 1....and a lot of 2,3,5, and 6. But I absolutely cannot tell you what causes these symptoms. As of yet, I do not know enough about dysautonomia to comment, but you should know that you are not alone in this. I also have (supposedly) Fibromyalgia and Anylosing Spondilitis. I too have thought I was going completely nuts. Maybe someone here can help. Ann

Susan, Thanks, I think an endo will be my next stop. I am not on any medications. I tried the beta blockers and had a terrible reaction. It felt like the beta blockers quadrupled my adrenaline and I felt like I was going to jump out of my own skin. They should have had the opposite effect. Oh well! Thanks for the info... Ann

The doc did not give me the isuprel because my heart rate was already too high. He stopped the test at 25 minutes, right when my blood pressure started to drop 125 to 90, because I was shaking too much. I do not know if it would have continued to drop if he had not stopped the test. So you guys also have too much adrenaline...has anyone been tested (24 hour urine) for excess adrenaline/catacholamines and what was the outcome? I just don't understand how I could have too much, but test negative. Does everyone with POTS have too much? I guess there could be other causes as well? I will check the Vanderbilt site. Thanks! Ann

Hi Everyone, I've been reading a lot of posts regarding the adrenaline rush, shakiness, and tachycardia that comes along with it (I think it is also causing me to have acne!!!). Because I was shaking so intensely during my tilt table, my cardiologist is INSISTING that I have a pheo tumor, though my 24 urine was normal (no catecholamines). Now he wants me to have a CT scan to look for this supposed tumor, but I suspect that it does not exist. Has anyone figured out what this is? Are we having an inappropriate response to a normal amount of adrenaline, like a receptor problem? Or do we have too much adrenaline like a pheo tumor, but no tumor is there? I am very curious about this subject. Thanks for any responses! Ann

Migraine, I've read while doing research on POTS that it can make a person feel hypoglycemic. I also feel that way and I have checked my blood sugar and it is normal. Ann

Very Blue, I'm no doctor, but the fluctuations in BP you described are normal. I mean normal for a normal person, not to mention POTS. If you end up with a sustained high diastolic, then you might end up needing medication in the distant future, but for now, I wouldn't worry. Also, the pure autonomic failure is characterised by HYPERtension while lying (laying?) down and HYPOtension when standing. This is not what you described, so you should get it out of your mind and leave it alone. The mind is very powerful and it can drag your body down quickly. I "just got this" too. I also have multiple other problems to go along with it. You have to try to focus on the positive and be glad that you have your arms and legs and that you are not in a wheelchair drooling on yourself with a colostomy (sp?) bag. It is not good for your health to be so stressed out on this. YOU ARE NOT DYING! I hope you feel better about this soon, take care, Ann

Very Blue, I noticed during my tilt that the BP was set for every two minutes. I know that my BP drops immediately upon standing and then immediately rises too high. The BP every two minutes is not good enough for me and possibly you too. A few places have new equipment that is able to monitor BP continuosly. I think it will show up abnormalities for us when it becomes widely used. Try not to become too distressed over this stuff. You are not going to die from POTS unless you get so dizzy that you fall off of a boat and hit your head on a rock or something similiar to that. I know the symptoms feel scary and sometimes I am sure that I my heart is going to colapse on itself, but I am quite certain that it is rare to die from POTS. Everyone here has abnormalities of BP and heart rate of one form or another and it seems to change day to day or week by week. Even though we all have a "norm" of abnormalities, every once in a while we are hit with a change and things go haywire. I think it is the nature of dysautonomia. Take care, Ann

Hi there, During my tilt table, I was hypertensive when I first stood up. My blood pressure did not fall until 25 minutes into the test. Ann

Deb, And everyone else with this crazy symptom...sound like catecholamines if it is waking you up at night from shaking. The same thing happens to me at night while sleeping and it also happens after I eat. I get shaky and my heart races. I wonder if we have an excessive response to a normal amount of catecholamines (mostly adrenaline) or if we have too many in our systems? I wish the docs would figure this thing out. The beta blockers did not work for me. They lowered my heart rate a bit, but they made me feel like I was going crazy. Oh well. Take care, Ann

The crawly feelings are called paresthesias. Check it out on the internet, because there are many causes and treatments. Ann

Hi Deb, Thanks for your story (and thanks to all the responses I got). My cardio says that the shaking is in response to excess catecholamines, which is OFTEN MISDIAGNOSED as anxiety or a panic attack...give time for your meds to work, but if they do not, keep plugging away for answers. I have found that many of these docs are not as brilliant as they pretend to be. Most are not up to date on this illness. Excess catecholamine is an autonomic function. Do you feel cured from POTS or were you just having a good day? Ann

HI there, Not sure if this will help, but I have experienced EXTREME rapid heartbeat on Claritin. After several minutes, it goes away and is replaced by a slower, more thumping beat. I have taken it twice and both times the same thing happened. The doc told me that Claritin does not cause this problem. Well I am telling you that it did. It was bad enough that I will never take it again no matter what the silly doc says. Maybe your son is sensitive to the Zrytec, I certainly would not give it to him again. There are many allergy meds that he can try. Good luck! Ann

Hi Everyone, I was wondering if anyone else has had anxiety for no apparent reason. I do not mean panic, just the feeling that I have had way too much caffine or too many diet pills, like I am going to jump out of my own skin and maybe my brain will explode...kind of like restless legs that involves the entire body. My tilt table test says I have inappropriate sinus tachycardia from an excess catecholamine response. I am on beta blocker (Coreg) which seems to have lowered my heart rate, but the meds have not relieved any of the excess adrenaline feeling like I am going to explode. Also, my 24 hour urine results showed LOW catecholamines, not excess catecholamines. Any ideas? I am not sure I can do another day like today. I am thinking of taking some kind of pain meds or something to counteract the wired feeling. Thank you in advance for any responses. Of course I could call the doc, but he does not even know what POTS is. And he is supposed to be a great cardiologist! I went from 80 to 167 on tilt, and was shaking so badly I thought I might explode. At 25 minutes, by BP started to drop, got to 90 (from 125) and I started shaking again so badly that he stopped the test before my BP fell any further. Yet my results say no evidence of orthostatic hypotension. I don't know what to think and I am just rambling here so I will stop now. Ann

Hi Nina, I hope you don't mind all of my questions! I am wondering why you do not take medication? I am asking because I would prefer not to take medication and I would like your advice. Have your docs told you that it is not good for your heart rate to be so high all the time? Mine tried to tell me that this time the medication was "not optional" just like a diabetic does not have an option when it comes to insulin. What is your opinion of this? I have so many other problems that I prefer not to wonder if a new symptom is just a side effect of some medication that I am taking. The problem is that I have felt so terrible lately that I decided to try the Coreg. Not sure if it is worth the side effects. I have gained 4 pounds in the last few days (water weight I am thinking) and I don't feel much better. Thank you, Ann

Nina, May I also ask what you are using to take your heart rate? I have found that my Heart Meter watch by Polar is usually much lower than when the doc hooks up the HR monitor at his office. Have you found something more accurate? Thanks, Ann

Hi Nina, Thanks for your reply. I have a question: Are you on any medication? I was shaking so badly (from adrenaline) at 167 that I thought I might die! I cannot even imagine what over 200 would be like...is it always like that and what do you take or do to combat it? I am VERY resistant to medications and usually refuse to take them, but my cardiologist insisted on Coreg because he said it was dangerous to always have a high heart rate for too long (months or years) and that I might fall and hurt myself from getting dizzy and lightheaded. What do you think about this? Is it so dangerous? Thanks! Ann