lynnie22

Hi, I am experimenting with my diet and vitamins, trying to see what induces greater or lower heart rate. I am also trying to find things aside from salt that can naturally raise my blood pressure in the morning, and, of course, lower my heart rate. Any discoveries/suggestions?

I just wanted to add that I FEEL what seems like anxiety so often, and it has been very hard to differentiate between what feels like anxiety from what is induced by my nervous system. I have begun to realize that most of what I feel is really physical and often I react to it with anxiety because it scares but there is a part of this that makes me oversensitive to any stimulation and that I think is a POTS response. Just trying not to sound contradictory. Hard really to explain the difference but I guess I have both.

Over the past few months as my POTS symptoms got worse, I couldn't understand why I was having all these "fight or flight" feelings out of nowhere -- like my heart racing more, trembling, chest tightness, panic, blood pressure that would suddenly soar. Doctors thought I had become very anxious, but I knew nothing in my life had changed to make that true -- and it felt so physical. It took time and being on this forum for me to realize that most of it is caused by my nervous system. I can feel it happening -- this trembling followed by the rest. Now for me an anti anxiety drug does help when I'm feeling like that -- it calms everything down some. But ironically beta blockers, although they certainly help my tachycardia, seem to worsen the 'anxious feelings'. I am an anxious person, but being anxious and feeling these 'surges' are very different. The surges seem to just come over me and as I'm shaking and at its mercy, there's nothing I can do about it. I can be calm or anxious about it while it's happening, but that's something separate, if that makes any sense.

Hi Hanice, I know exactly what you are talking about. I also for the last few months have been having very nervous periods where I feel I'm jumping out of my skin, and my blood pressure goes very high at times, when I am nervous -- the bottom number way over 100. I can tell you that two doctors told me not to worry, that it's part of it, and I need to learn to relax. I overreact to everything these days, very stressed by anything. I am certain with me it's largely the POTS. I think reading Kabat-Zinn, or listening to soothing music or taking time out to relax is crucial. I try to take time out from my own nervousness and stay away from things that upset me.

I am glad you had some real benefits from the program, Jackie. I so agree with you about lifestyle management. I am finding as I am beginning to keep a careful diary of my symptoms, food, activities, etc., that if I get too excited about anything or do too much activity, my symptoms get much worse. I know from experience and reading at this point that the sympathetic nervous system's overstimulation is a critical part of our symptoms. You believe it's a result of POTS. I'm not sure which came first, but perhaps what matters most is learning to calm it down. I think we all are struggling to find those ways -- and I honestly don't know at which point we can turn it around which would be great. Maybe it's a combination of factors. My doctor told me a story about his relative who had orthostatic intolerance and couldn't stand without falling. She spent the rest of her life in a space suit, but happily. Then there's the Levine exercise program. But as far as STRESS, YES, it's a huge contributor for me, and I seem to have become unable to handle it like I used to or the POTS is putting me in OVERSTRESS/sympathetic NS mode and I have to find better ways to switch to parasympathetic more often. Thank you so much for sharing your experience there -- and I hope you continue to do better and better!

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My adrenaline surges often have a high raise in HR, but not always. I know it's like the 'fight or flight' reaction like our body is reacting to something dangerous. Mine are coming more and more often. It usually comes in the evening like many of you, but also in the afternoon. I begin to feel a tremulousness inside, a shaking and anxiety although I'm not consciously anxious about anything. My hands shake, my heart often races, my blood pressure often goes up, I feel sometimes like I'm going to jump out of my skin.

I'm sorry trice that you haven't had much luck with doctors. A good doctor is really hard to find I think, especially with our problems. Senior independent housing that takes 1/4 of your income sounds great. In NYC we do have housing for middle and lower income people, but it's hard to get one. There are lists and lotteries and it takes a long time. I am beginning to look into all these alternatives. I hope you find help and feel better.

That sounds like a good idea. I will check out swim classes in my area. Love your mom's dog.

Thanks for all the suggestions. Kayjay, I love your dog. How old is she/he? Swimming does sound like a good idea. Just have to get myself to a health club or pool I can join! Not a great swimmer but always wanted to become better. I went to a nutritionist just a few weeks ago, am having a few tests for minerals, hormones, leaky gut, and I am sure I am vitamin depleted. Gluten free on this board seems to be the way to go. My appetite loss Rachel has been going on for months, through the winter, spring and summer.....don't know what caused it. It's a shame considering how much I've always enjoyed food. Hopefully I'll get to the bottom of it. Thank you for your explanation, Science Girl. I don't know what I have fully, hopefully will find out in Mayo. But your name is fitting. I've never done Pilates and right now yoga is a bit of a challenge because of two torn rotator cuffs, it's not easy in any case, but they have classes nearby for people with disabilities.

Good advise, Jan. It actually got me thinking about affordable housing and putting myself on some lists. As far as social security goes, I'm old enough to collect --legitimately in a year, it's just thousands of dollars short of my expenses (I know that seems unbelievable, and I don't know how many of you live in NYC but things are expensive). Katy, I wish I could do a roommate -- it would be hard here. But thinking ahead is really important. I was on disability many years ago for CFS, so I know how difficult it can be but once on, I think it's easier to get back on. For several years my work has taken up most of my life. I never thought that would change.

Well thank you kayjay for that valuable list of advice. Your commitment is inspiring. As far as you questions, I have had alot of gastro issues the last few months, don't know why -- despite a colonoscopy/endoscopy -- but somewhere a few months ago I lost my appetite and lost alot of weight, along with muscle mass. I don't think I eat enough protein, let alone enough, period. I'm sure I'm not absorbing nutrients properly. Why? It has paralleled my recent sharp decline.

What is it about exercise that ultimately helps us but seems to for a while exacerbate our symptoms? How do you deal with that?

Thanks for the feedback. The problem is there is no way I can live on social security right now, too little by thousands of dollars. That's the problem here. I am thinking of how to cut down expenses. I have no children or family that can help. I have good friends but they can't help financially, I wouldn't ask them. I know I'm not the only one who finds herself here and I hope somehow that I can start feeling better so I can see my clients.

I started a serious routine yesterday (can't do that much) of my recumbent bike with resistance for 8 minutes and many of the exercises Alex suggested. What I found is that, although I felt good afterwards, my heart rate went way up today and woke me up at 120 in bed. Considering I'm on a small amount of inderol, this was strange. I also had leg cramps and couldn't get out of bed for much of the day and my bp has been on the low side. Is it common for exercise (not much at that) to raise your hr for a while? Karen, it sounds like for you, exercise has been extremely helpful immediately. My heart rate is usually (on 10 mg of Inderol twice a day -- but not during the night) 75 sitting and 90 or so standing, except in the AM when it is 120. It has increased it seems with exercise for the moment. My bp is all over the place, very low often, can't usually take the inderol in evening without it going low and dizzy, but with any sort of work or stimulation, goes way up.

I have been hesitating to write this post because I certainly know many of you are struggling like me or more than me and I keep hoping that things will get better, but they are getting worse. I am really freaked by the possibility I may not be able to support myself and have no idea what I will do. I am in my 60's, live alone, did not save for the future because I spent many years as a caregiver for my mom and did not think ahead, am in the healthcare field in private practice and am unable to know if I can go to work day to day, hour to hour, so of course my business is crumbling. I cancel regularly, with pre syncope or stroke level bp or something else....I live in NYC where my rent and expenses are very high, and, of course, like all of us, did not plan on getting sick.....This is what scares me most, not being able to take care of myself, not being able to make ends meet. I am feeling so overwhelmed by this prospect as I watch my health and practice go downhill, and have no idea what to do. The POTS doctor here has not been helpful, I am returning to Mayo in November, but the truth is, I have been seeing a great worsening of my symptoms and must be realistic. I just can't do anything but panic. I don't know how and if I can get out from under.

That's how I measure my BP too. I have two blood pressure monitors, one for each place, and one is much more exacting than the other -- but I also extend my arm, palm up, preferably supported near heart level. Mine fluctuates wildly, but beeps when the position is off.

I have just downloaded the link you posted, Alex. Thanks! I cannot believe how flacid I suddenly became everywhere....not a muscle in sight. It's got to be related to my decline. I didn't think of taking a protein shake supplement Rachel, but it makes so much sense, considering how little food I eat these days . I don't know where my appetite went and why I am so nauseous -- had a complete gastro work up, well, the basics at least. But getting my muscles back seems crucial.

Thanks all of you. Andy. that was an eye opener. Didn't realize that about calories and muscle mass. Does that mean because of my small intake over the past few months, that has been the reason I have lost so much muscle mass? Thanks Katy. I will try your regimen. Sarah, do I tell the doctor arranging my schedule to include Dr. Joyner -- I hear it's a very busy one. Or do I just contact him when I get there? I'm going to be seeing the cardiologist who originally saw me and diagnosed me, who has set me up with an autonomic neurologist and who knows who else.

When I was at Mayo three years ago (returning in two months), I was told it was essential to use a recumbent bike to build up leg strength. I have but not rigorously enough, and for whatever reason over last few months, have had rapid weight loss accompanied by losing most of my muscle mass. Of course my symptoms have gotten much worse. I don't know the cause of the weight loss or muscle wasting, and am looking into it, but am trying to build myself up again. I was wondering what you do for muscle building of your legs or abs, and how much you can do (it is hard to do for me). And, if anyone has ever had this rapid loss of muscle.

Issie, this is so exciting! Really glad for you! And if you wouldn't mind posting more of your particulars, I'd be glad to read them. This is an aside, but I happened to find one of your old posts on labile blood pressure, and I'm wondering how that is doing with this. I suffer from acute lability and would love to know how this has all helped that.

I've been assuming almost all of my symptoms these days relate to POTS. We all talk about cold feet. Recently I noticed that I wasn't just experiencing cold feet, but cold legs, ice cold in fact. So I looked it up. Not that POTS comes up as a cause very often on the regular sites. So I'm curious and concerned. Do any of you have ice cold legs? This is mainly at night for me while I'm sitting around. My legs are freezing. Sometimes I get pain down one, sometimes my foot goes numb. But what came up online was PAD, meaning blockage in the arteries. I thought I'd check with you all, and see if this is indeed also a symptom of our POTS. Thanks for your feedback.

I first off want to say I'm really excited for you Jackie! It sounds like this program is definitely helping and will continue to help you. The yoga masters have demonstrated (after much practice) complete control of their autonomic nervous system and I know they use several breathing techniques as part of it, especially diaphragmatic breathing -- and it sounds really key. Especially when you can measure your parasympathetic progress. I do have a couple of questions if that is okay. Does Dr Kyprianou believe that everyone with POTS suffers from this sympathetic overactivity? Does she explain how that relates to the nonvenous return or lack of blood volume when we stand (or change position)? That part I don't totally get. My hands, by the way, are always warm, and my feet, ice cold -- making me a weird POTS person, I think. More questions perhaps to come. In the meantime, keep us informed of your progress.

I had my thyroid removed six years ago because of cancer. I think that's when all my problems began. POTS symptoms began slowly, never felt right. But I have a worsening problem with getting my body to convert what I take orally (synthroid) into T3, the form it needs. I always have TOO much T4 and too little T3. My endo has been testing and testing me for years, saying it isn't possible, although his blood tests keep proving it, and I have seen some sites where others do have this problem. I was just wondering if anyone here has a similar problem and I wonder to what extent being hypo (not enough T3) and hyper (too much T4) is contributing to my POTS and blood pressure problems. Any suggestions or input would be appreciated.

Good guy and astute.