lynnie22

Hi Jackie, Like AKgirl, I'm also interested in other components of this program -- like meds, and I remember something about exercise. Also I am curious partially out of my ignorance, how is an overactive sympathetic nervous system a cause of all POTS? I am fascinated by what you are writing, so please continue. By retraining your nervous system to go para, does it then automatically do so eventually, thus correcting itself? Hope, Jackie you are doing really well! I'm very excited for you!

Thanks for the offer Angel. I may do that. Thanks Kim. Yes I also take ativan, but at night to sleep. Maybe I need to take it earlier when the HBP comes on. I took one earlier after a little more inderol when my bp shot up to 171/116. It did help eventually. It's scary. My internist told me to go to the ER if it happens again. He said it's very dangerous. I cannot function this way. Not sure if it's dysautonomia or not, but all of it could be -- or something else. Friends are trying to help me find good doctors to see and I will have that MRI as a beginning to seeing what is going on with my adrenals.

My symptoms get better at night when I'm lying flat and sleeping. I don't need a bb then. But evening is not good and late AM is worst.

I'm sorry you're having such a tough time. I too have been unable to exercise for quite a while. I get dizzy and out of breath an my heart races all day. But I agree that you have to pace yourself, do whatever, alittle at a time. In whatever position is comfortable for now. Start below what makes you tired. Work yourself up. I was doing that and then I had these other problems and my whole exercise program fell apart, so I'm trying to start all over again, even five minutes on the bike, or lifting your legs while lying down.

It is interesting to read this. I have two torn shoulders and am seeking answers. I have not had surgery. Have they checked for additional tears? Not to be negative about it, but sometimes the PT depending upon how it's done, can aggravate the tear. It needs to strengthen the shoulder. The clicks are a sign of something with the rotator cuff perhaps. I do think you should find out what you're dealing with first. In any case, I agree that acupuncture is supposed to be very helpful with the pain, and there are a couple of forms of yoga that have stretches and exercises to help heal shoulder problems. There are also many, many videos on u tube about shoulder problems, some of which I have found helpful. For me, after months of unhelpful PT, I am pursuing a cortisone shot (for my frozen shoulder), acupuncture and viniyoga. The surgery and recovery must have been difficult.

I didn't know Mayo in Arizona was more equipped. Thanks, Kim. As far as my new symptoms, sure I'll elaborate. When I first went to Mayo almost three years ago, I was exhausted, out of breath, various aches and pains, and a very fast pulse when walking. I didn't know it was on standing then. Over the past year, I have lost 30 pounds and my appetite for no reason, have had more and more frequent episodes of trembling, numbness in various parts of my body for weeks, mainly the back of my head, my heart rate has climbed although I'm on a beta blocker which I've become extremely sensitive to and can no longer take much of. My blood pressure written about in a separate post has become completely out of control, going very high usually for a week every month only after 3 pm (171/115), settling down later in the evening after more beta blocker. Recently in the last two weeks, it has begun to dip to all time lows at night -- I think a reaction to the bb, but so strange because it never did that before. My eyes have been bothering me for the last year or so, lately to the point where I can't wear my glasses much or look at lights. I have been less and less able to do any exercise, I get out of breath, many more periods of being dizzy, feeling faint. I get rushes of anxiety that is overwhelming and with it feel a trembling, but I don't think it's emotional. So those are my latest. I also developed terrible pain in my stomach, gastritis, maybe not related, and tore both shoulder rotator cuffs, I'm sure not related, but just to add to my frustration. Thank you for listening. Any ideas?

Hi Hanice, i am scheduled for an MRI of my adrenals in a couple of weeks. I've done 24 hour urine for metanephrine, was negative. No other tests really except the usual POTS tests and heart tests -- echo, etc. I have no thyroid and had one parathyroid removed for being hyper, I've read somewhere that paras can affect bp, but not sure. It is really driving me crazy. Last night my bp was once again bottomed at 74/51, tonight went up to 171/115. Took a small extra piece of inderol and now it's way down again. It's driving me crazy let alone scaring me and making me feel completely out of control.

For the last couple of weeks, my blood pressure has been plummeting at night. It's hot here, but I am not going out and am very well hydrated constantly. It's not every night, but almost every night this week, and it may or may not be related to the tiny piece of inderol I take around 6pm, supposed to act for 6 hours. Anyway, at about 8 or 9 pm, I begin to feel shaky or whoozy and tonight I got terrible chills, turned the AC off and sat here shivering for hours, while drinking water and gatorade and V-8 juice, watching my bp sink to 78//51 and up. Right beforehand, during the day my bp was kind of high, 140/85, probably reflective of all the fluids and salt I was taking. Now I am sweating, turned the AC back on, my bp seems to be alittle higher. In addition, for the last couple of weeks, I have had terrible bouts of anxiety, shaky and like I'm jumping out of my skin, but feels very physical. I think I've written about this a few days ago, maybe, can't remember but things are getting worse. Went to see my cardiologist, she told me to not take the betablocker unless my bp is 110, but of course my bp is over 110 when I take it, it plummets later. No one has a clue and is generally dismissing this as dehydration, despite my fluid intake. Does anyone have a suggestion what I should do? What is going on? Just to add I have no thyroid and my numbers are always out of whack, not sure what they are now. If I try to stop the bb, my heart rate goes soaring, even after a few hours, so that doesn't seem to be the answer, and not sure if it's the bb at such a small dosage (maybe 5 mg of inderol. Any help you give will be greatly appreciated.

I hope this is within the appropriate boundaries of this forum. I am not asking about particular doctors. I just have been having alot of recent issues that are new and scary and baffle the doctors, so I'm thinking of returning to where I first got tested, Mayo in Minnesota. However, when I call there, I get different feedback from whoever is scheduling and am confused. I have been told that they no longer send you to multiple disciplines, just the one you make an appointment with, and I was originally seen by a cardiologist who I must return to. That is fine, but they will not let me see a neurologist as well, unless ordered by the cardiologist. My symptoms, besides of course the POTS, seem very neurological in nature, so it seems only appropriate for me to be checked out by a neuro there, if I'm going to travel from NYC to hopefully be evaluated. I was told by one department that you cannot be seen in the neuro center if you're over 50, and by the neuro center that you can't make an appointment there at all, if you are new to that department. Anyway, it is confusing and I am just wondering how you all get evaluated, and if you have any suggestions on other places or how to work with the Mayo system. There is limited choice here, and it seems that my newest symptoms are not being addressed.

Reading all this has been amazing. I recently wrote about this too because I wasn't sure it was part of the dysautonomia -- and after two and a half years of being diagnosed, I have found myself super sensitive to everything so I can certainly relate, Justin. But it didn't happen with the POTS, it happened slowly after the POTS and as it has gotten worse for me. For the last few months, I can't stand to be with more than one person, and not outside, certainly not in a restaurant with all the noise. I didn't understand it a year ago when I'd go to a party and needed to sit away from everyone, exhausted by all the stimulation. I haven't been certain why I can no longer go to a movie house, but just want to run out and go home. I am exhausted by all of it, hate stores, find them overwhelming, can't really go anywhere except work which is my own office or an apartment where one person is. No more public places and I live in NYC. In therapy it is being examined as claustrophobia, or worse, vitaphobia (fear of life), but in truth, the physical oversensitivity is making any public place unbearable and I feel safe where it's quiet and calm. I would like to learn how to desensitize myself, or calm down so I can take it better. Some of you have said your meds help. Which meds?

Just to update: I'm back on the inderol after having such a severe reaction to not taking the small amount I take for 36 hours -- bp of 150. QUESTION: What I don't understand, and the doctors don't understand is, why is my bp now 150 without bb, when before I ever took them almost three years ago it was just 105 or so. Very distressing and confusing. Is my POTS just getting worse or is it the function of the bb?

Well I did call the doctor, although it was the covering doctor. He didn't seem fazed. Blame it on the heat and the condition, he said. So he told me not to take the beta blocker today and I hadn't taken it last night. What happened even though I take so little was that after about 28 hours without, my heart rate suddenly went soaring. It became unbearable. I called him again, took a betablocker while waiting and now, about an hour later feel SO much better, although again my bp, considering the heat and my low bp in general may drop. I'm trying to have my water and salt. Hi Katy, so I did do that, and don't know the answer from my regular doc(s), but I learned you can't just stop a beta blocker for that long, no matter what the dose, at least I can't. I will call my regular docs tomorrow, especially my cardiologist to see if this deserves a visit. But yes it was a whole new 'low' for me, but then, lately I've noticed my bp keeps dropping little by little, despite fluids and salt.

I don't blame you, goodnuff. Looneymom, thanks for being there. I am absolutely hydrated, salt and water by the case yesterday. I don't know what happened.

Hi Goodnuff, Thanks for responding. What do they attribute to the syncope while sitting, or is it just the nature of autonomic dysfunction? My bp dropped sitting but mainly while lying down which was weird. I have stopped my beta blocker for today and will see if that makes a difference, hopefully.

I am used to associating POTS with feeling lightheaded or dizzy/close to passing out when I stand up, and my BP going down too low from the beta blocker or when standing. But yesterday after making sure I was well hydrated because of the heat and resting, my blood pressure dropped low sitting so I didn't take my next dose of beta blocker and it continued to plummet. By 2AM while I was lying down, my blood pressure was 78/48. Is this POTS? Does blood pressure suddenly plummet llike that while we are lying down on no meds? My aunt recently had low bp that ended her in the hospital from internal bleeding so it scared me. I recently had an endoscopy that has the potential of internal bleeding but no signs of that. My bp has never gone that low before especially without taking a beta blocker. Today so far it's okay (100/70) but I'm not taking the betablocker for today, but I'm still lightheaded and dizzy. Is this a normal occurrence or should I be thinking of going to the ER if my bp goes down again? I've been cutting back on my beta blocker the last few weeks because of lower bp in general, because even 10 mg seems to lower my HR enough. Could that lowering have caused this sudden plummet (I don't know how)? I'm not sure what to do about the inderol, or whether I should check this out at the hospital if it happens again. And I thought POTS affected our blood pressure most when moving. THanks for your advise!

That's terrible about your friend, Katy! I agree about not waiting. I had an endoscopy two weeks ago for increasingly uncomfortable symptoms. Have an appt with dr in a few days but he wouldn't give me any info until I see him. Very annoying. If there is a choice I think you need to follow up as soon as you can.

Hi, Well it sounds like you are doing a lot, but swollen lymph nodes are in my book, some sort of red flag, or a flag that says that your body is fighting something. So there are the swollen lymph nodes, a sign of a possible infection or inflammation (inflammation, for sure), ulcers which are often caused by a bacterial infection or the result of an inflammatory process in the gut. So your body has been trying to fight something since you had mono but what? In their biopsies, did they check for different infections in your gut? Just curious. I will research my book and see if I can find anything insightful. I wish I had better answers for you, but my gut is telling me that your gut has some sort of infection or inflammatory process that hasn't been named yet. And by the way, do they know what caused your ulcers?

Hi Jackie, I have recently been having GI problems myself, also aggravating of course the POTS symptoms, so this all resonates -- although the swollen lymph nodes sound like a concern not to be ignored. I agree that the blood being red in your stools seems to indicate something lower, although I can't imagine that hemorrhoids are the source of all of this. So, did the swollen lymph nodes start with the mono-- and has never really resolved? Now there are going to be a lot of opinions because there's a lot going on -- but the doctors that you've seen I think you need to see again -- at least as far as infectious disease and the gastroenterologist who you're scheduled with. It sounds like they do need to do a thorough scanning of your gastro/ab system. I am reading a book on the digestive system that makes a good case for most diseases beginning with the gut. Have they checked for infections/imbalances? It is suspicious that first you were bleeding higher up and now further down. It to me sounds very inflammatory....yes I agree with E. that you should ask your doctor to do a full check up.

Hi Alex, I actually just saw my POTS dr today and it is both he said, the adrenaline feeding the anxiety back and forth. I am in therapy and believe that cognitive techniques can be helpful. When a surge happens, however, it seems so overwhelming. I hope that can change. I just ordered a dvd on pranayana and will look for relaxation meditations. Maia, my norepinephrine levels were checked once and somewhat elevated. Not checked again.

Pumpkin, I'd really appreciate the links -- and any suggestions for relaxation meditation cds. Thanks!

MomtoGiuilana, I never thought of pilates, it may be more possible because of my torn shoulders right now and of course the position. Thanks.

thanks for the feedback. Katy, wow that just must be a real challenge especially in a situation where others are losing their hearing. But glad you have been able to desensitize yourself. It is amazing how for some of us, things are so much more so. Bebe and Agreeky, it's good to know I'm not alone. Acupuncture is on the list. I don't think there could be anything I'm taking causing this, Looneymom, unless it's daytime withdrawal from ativan which I take to sleep. Maybe....

I have been posting quite a bit lately as I try to tackle the many challenges of POTS and try to improve. Worsening is this crippling anxiety/sense of panic that seems to rise up inside of me, causing me to be unable to function in the world and feel overwhelmed/hypersensitive to all sorts of stimulation. Concomitant with it are periods of escalating blood pressure, usually for a week every month. I am not certain how much of the anxiety/excitability is directly related, but I suspect a lot of it. It FEELS so physiological. Anyway, I thought I'd ask those of you who go through this what you do about it, what helps. Aside from taking ativan, deep breathing, avoiding too much stimulation, and listening to soothing music, I'm not sure what to do. Especially as I become more and more sensitive to sounds and excitability around me. I've also become hyper sensitive to everything I take in physically too. I know this is not uncommon.

Fascinating about the lesions, Dizzy. Impressive about all the diet/supplement help with so much. Several years ago I had MRIS of my brain that showed active lesions associated with MS and although I had some of the symptoms, I did not have MS. They did not know what to diagnose me with, so finally they settled on CFS. Oddly enough, the lesions have faded, not disappeared, they are still there and that MRI coincided with my diagnosis of POTS three years ago which might go back much longer. I don't know what to make of it, have not tried a gluten free diet (soon!) and other alternative supplements for the symptoms we suffer. Am inspired.

Adrenal Fatigue with connection to POTS mentioned: check this out! Interesting article. http://www.drlam.com/articles/adrenal_fatigue_related_conditions.asp