EarthMother

Hi all! I saw my doctor yesterday -- I've been taking salt tablets and increasing my fluids for about a week but still can't seem to put on any water weight actually any weight at all which is probably contributing to my POTS. I asked about DDAVP (and brought my doc lots of info from this web site!!) and he said I should give it a try and see if it helps me retain more fluid. So I am starting off with .1MG of Desmopressin nightly. Has anyone else given this a try? Thanks! EM

My doctor sent some of my blood work to http://www.betterhealthusa.com/ for some iGg or IGe I can't recall which -- food sensistivity panels. It was a big help and I have been on a modified diet for at least two years now. (p.s. I don't think this helped with the nausea at all, but it did help get some of my strength back and I think I felt less sick after meals, once I learned what I could eat and how often.) As for nausea, I also go through really bad spells with this. Mornings tend to be the worse. What helps? Let me think ... foot massage, drinking lots of water before I get out of bed, chamomile tea or sometimes peppermint tea. Good luck in your journey. I know it is hard when these things run in our family but it is wonderful to have the validation and support from those closest to you. Good thoughts your way, EM

Hi Nicole, First big hugs ... it's very hard to managing the old symptoms but when we get thrown with new adventures it takes extra effort. I periodically get vertigo where it feels like the room is moving, not necessarily the floor -- but I live in California where the ground DOES actually move every now and then ;-) You gave your BP stats, but how is your heart rate when you are feeling the symptoms. I've noticed that my BP actually stays normal, but my heart rate can be very high. Or not .... Good luck sleuthing, hope you find some answers and relief soon. Good thoughts, EM

Tell me again ... I know I read it somewhere but can't put my fingers on it again. Why is it I often feel much better in the evening than I do in the morning or even early afternoon? For instance, yesterday I could barely get off the couch all morning, I just felt awful. But by 7:00 p.m. I was much stronger, less symptomatic all around and even went out Christmas shopping for an hour! It seems so strange. But I've learned to be thankful for whatever little pockets of time I do get each week. Good thoughts, EM

I've described it like having the flu .... I just feel sick kind of all over. Weak. Sometimes my body aches. Then I lie down and in a little while I feel OK .... until I try standing for a while again! During my tilt table test on Monday they kept me up for 25 minutes ... I haven't done that before for years. They asked me how I "felt" and I said I feel like %$%^. Then I realized they were writing that down in my notes so I tried to be more graceful in my choice of adjectives :-) On a "good day" like last spring .... I could walk for maybe an hour (SLOWLY) in the supermarket and stand maybe 5 minutes in one place. I could sit at a meeting or behind my desk for maybe 2 hours before I'd need to take a break and lie down with my feet up. Lately it's been more like being able to walk (VERY SLOWLY) for maybe 7 minutes and standing is only 1 -2 minutes at a time. At my current best I can sit up for maybe an hour in the afternoon. And then it's time to put up my feet and let the blood flow back up to my head. EM

I must have way too much time on my hands ;-) but does DINET's host have a live chat feature we can request? I'd love a chance to meet some of the members, talk about what works, how the day was or know who baked some wonderful low sugar holiday cookies! Wishful thinking EM

Thanks divine ... did you end up going off Mestinon all together or just lowering the dose? I also have been diagnosed with CFIDS for the last five years ... my official POTS diagnosis is new as well. Nice to meet you and welcome to the boards. EM

No I don't test positive for ANA, I like hifgirl have autoimmune thyroid disease. I have high antibodies against my own thyroid. But with autoimmune thyroid the only thing they seem to do is put you on thyroid replacement -- which I am on -- though I still think it plays a more important role in the overall schema. Thanks for the feedback on Mestinon -- periodically I have to remind myself to stop searching for the holy grail! :-) For now my doc said to try salt tablets and see if I can get my blood volume up. I think that's probably a good path .... this all started (again) in August when I lost about 15 pounds, which ofcourse I attribute to my thyroid disfuntion -- everyone else probably just thinks I have an eating disorder. Presenting the POTS info to my team of doctors will be a big help. Maybe we can all get on the same page and try some things to help the POTS and then take it from there. Thanks again! EM

Nina, I thought the Mestinon (Pyridostigmine Bromide) could be used if the antibody levels were present. That's what we were hoping to find and then try out. EM

I had my tilt table test today. Got up to 155 without drugs, BP stayed fairly normal. Doctor confirmed this is POTS. Ok, now the work officially begins! My cardio is reluctant to try beta blockers because they could increase my fatigue (I have CFIDS) and I am likely hypovolemic. We are discussing florinef, but for now I am going to take salt tablets and see if I can't bring up my blood volume. Since I have thyroid autoimmune disease I am particularly interested in the report (on this site) about an autoimmune component to POTS for some people. In specific it talks about an "antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000)." and instructs us to have our docs contact: Dr. Vernino Department of Neurology, Mayo Clinic 200 First Street., S.W., Rochester, MN 55905 verns@mayo.edu My question is ... has anyone had this test at this lab or know of any other labs who perform this? My hospital staff have tried to reach Dr. Vernino but thus far have been unsuccessful. Any tips? Thanks! and thank you so much for this board it was an amazing help today as I talked with my doctor. EarthMother

Ahhhh sigh .... I remember when I could eat cookies ..... When I was at the cardiologist yesterday morning I was very nervous and my BP resting was like 170/120. I usually run 120/80 or less. Unlike body temperature that tends to stay put near 98.6 give or take a half point ... our BP and HR can change dramatically with our mood. The key is to see what it is "on average" and like most scientific studies throw out the highest and lowest as just odd anomolies. However it's probably a sign that you may have been over doing it .... just a tad. Good luck finding the quiet moments in the now. EarthMother

Thanks so much. My cardiologist talked about 5 mg maybe three times a day -- he said it was the lowest dose. Have you tried different beta blockers? I think inderol is the only one I am familiar with.

I saw a cardiologist this afternoon and have a tilt table test scheduled for Monday morning. (I failed the last one back in 98 but no one seems to have those records any more :-( His recommendation is to try inderal or another kind of beta blocker -- a real low dose to see if that will prevent the very high heart rates. I have a vague memory of trying a betablocker some 15 years ago and my sense was it lowered my heart rate too much and I felt worse. But I've felt really horrid for the last five months .... so I'm game to try something ... anything. Anyone have any info/experience on taking beta blocker for POTS. Thanks! EarthMother

As I read the posts it amazes me how much each of us have survived and how much we continue to face these challanged and just "keep on keeping on." Up until this past August I considered my relapses brief (a few months every few years when it is really bad) but for the most part if I paced myself I could still manage to work. But I am simply not recovering from this last bout -- five months now and counting. My question is how many people had to stop working, or lost their jobs? What about disability claims and POTS? If we find it hard to find a doctor who understands how to the insurance companies view this as a disability? EarthMother

Ouch! I use to try and drink 64 ounces of gatorade a day ... but ended up with systemic candida a couple of years ago. I think the sugar in the sports drinks is too much for my system. However drinking plain water feels like I flush out the sodium/potassium balance. I'm now probably only drinking 40 ounces a day -- and yes I feel like crap so when I see my cardiologist Thursday I'll see if he has any suggestions. EarthMother

Justin, Have you tried magnesium for the palp/skipped beats? I take 800-1000 mg a day and it may take a month or so before you notice but it really helps to regulate the rythm. For me the skipped beat sensation was far more troublesome than the high heart rate. Mine also goes up 120 often simply by standing .... but only on bad days. (Or in this case the last two weeks, but it still doesn't feel as bad as when it was doing that AND skipping all the time.) Good luck, EarthMother

That IS a scarry feeling. I've had it happen to me at a meeting and I simply had to get up and leave. Some days it feels like I am moving my arms through thick water ... I assume those are the days I am having really bad CFS (chronic fatigue syndrom) but the more I read about POTS it is anyone's guess why. I have tried to watch the tension in my shoulders, to see if perhaps I am using some small muscle movements that ar simply depleting my arms without realizing it. And that may be the case for me. I also found that massage therapy helped a great deal. My therapist "released" some things in my back shoulder blades and I have been much better since. Good luck, let us know what you learn. EarthMother

I've been tracking my BP and HR this week -- bought new wrist cuff monitor that is quick and easy -- because I see a cardio next Thursday and I want to talk with him formally about POTS vs what he previously dx'd a few years back as "idiopathic orthostatic hypotension" -- translated we-don't-know-why but your blood pressure is dropping when you stand. I didn't need a tilt table test to tell me that. As you indicated mine goes both ways ... sometimes my heart rate (especially in the morning hours) jumps up 40 or more beats per minute when I stand vs when I am reclining. However my BP sometimes stays normal. Other times it's my BP that drops with or without any noticable change in my HR. I was diagnosed with CFIDS about the same time I had the orthostatic hypotension diagnosis -- but because I never new anything about the latter, I have focused (and attributed) my symptoms coming from the chronic fatigue syndrome. However after finding this site (MANY THANKS) I think I need to take a fresh look at the overall symptoms and see if some of these are related to POTS. Always searching! Good luck in your journey. EarthMother

Sounds like the proverbial calm before the storm. No answers ... just some questions..... Does this happen each time you are in the lieu? Does it happen only in the morning? What if you didn't have the cigarette and pepsi? What happens then? My heart often pounds when my bowls move through me with the rapidity that you describe. How long have you had these symptoms? Good thoughts your way, EarthMother

This is going to sound strange .... but when I get nauseus it is usually more in my head than my stomach. (Not psychosomatic, just the nausea seems to come from someplace inside my dizzy head.) Mornings are the absolute worst. By night fall I can almost feel like myself again. Then poof! Sometime in the middle of the night it comes back and by morning I don't recognize myself again. I've tried juice before getting out of bed .... calcium before getting out of bed .... soymilk before getting out of bed .... compression stockings etc. Each seem to work on some days but nothing all the time. BTW I have some interesting gluten free recipes on the web (years of wheat free, sugar free diet.) Though I am not gluten sensitive -- I can have oats and rye -- but I rotate all my foods on a 4-5 day plan. http://coolkarma.com/Foods/index.html FEEL BETTER SOON. EarthMother

Hi Beck, It is hard not to get lost in acronyms and labels as we each try to find our own path along this journey. These are very strange body sensations and I think for me, my own panic disorder stems from my mind trying to make sense out whatever it is my body is trying to tackle. I loved the advise this site has on What Helps .... things like compression tights, sitting down in the shower, or scheduling activity in the late afternoon ... were all things that I had learned on my own over the years. They also list lots of interesting information what meds some folks have tried. There are some good free or inexpensive panic programs out there on the web, you may want to read up on what is available. I really like the healingpanic.com program because it focuses on what we can do -- like retrain our breathing and re-condition our minds. I've also begun some interesting new therapy called SE. http://www.traumahealing.com/ For me there is something about POTS that feels like post tramatic stress syndrome .... it might be all those episodes of a racing heart. The SE approach to therapy focuses on retraining those neural networks to go down new paths and not fall back into our panic grooves. Good luck finding things that work for you. You may want to pick one or two symptoms that seem most troublesome and focus first on those. Keep in mind that things that may work this week, month or year .... may not work next week, month or year. It's a dynamic condition and it requires us to become highly adaptive and empowered in our healing journey. Good thoughts, EarthMother

I do a rotation diet and at times had to give up wheat, dairy and eggs as well as sugar. It was really hard especially as I am a vegetarian. After a year of being very strict, I find that now with a rotation diet I can have wheat one day a week. The same goes for dairy and eggs. Sugar is probably another story ... I certainly don't keep raw sugar around anymore, but sometimes I bake "minimally sweet" muffins or other desserts and have modified recipes to use fruit or a touch of barely syrup etc. Still can't use more than a dash. But after awhile the minimally sweet foods are quiet satisfying. I have a web site where I have posted some wheat free etc. creations .... http://coolkarma.com/Foods/index.html Good luck! EarthMother

Chest pain ... yes and it is scarry. After years of watching (and ofcourse several cardios who tell me I am OK) I've noticed for myself that I tend to get a severe pain in my upper right chest (heart area) if I have abdominal discomfort in my lower left area. Don't know why but I suspect it is some kind of muscle or neural pathway. The doctors call this Non Cardio Chest Pain or NCCP. Sometimes it helps to have an acronym :-) Like Ling I also take magnesium up to 800 mg a day. One of the other symptoms that is very bothersome for me is the ectopic beats .. skipped heart beats. For me it is like the heart stops or pauses and then BOOM a big beat that sends like a shock through my system. It is un-nerving. The magnesium regulates the heart and makes these far less intense and far fewer. Goog thoughts, EarthMother

Greetings everyone. New to the boards and doing quiet a bit of thinking about POTS for the last few weeks. I have probably always had orthostatic tachycardia syndrome -- but had a formal "diagnosis" after a tilt table test about five years ago. The same time the Epstien Barr titers also showed chronic and acute infections -- this coupled with severe fatigue and mono like symptoms that lasted over a year ... I was diagnosed with CFIDS (chronic fatigue immune dsyfunction syndrome). I've managed very well for the last few years ... learning how to "pace" myself. But this past August I had a relapse. Everything seemed to hit all at once again. The POTS is dismal I am so nausaus in the morning and standing is out of the question until much later in the day. What seems the worse "symptom" to handle is the acompanying panic attacks. The body takes such dramatic changes that it is very hard to hold on to ground. I've reduced my hours at work, but I know time is running out and I need to "recover" soon or face loosing my job of 20 years. There are so many aspects of this disorder .... there is the panic .... there is the fatigue .... there is the standing ..... where do we focus our attention on recovery? Or at least another long remision? Thanks for your thoughts. EarthMother

It surprises me how the recommendation differs so dramatically between doctor to doctor ... and indeed between cardiologist to cardiologist. After one of my last holter monitors some 5 years ago I have a cardiologist insist I start beta blockers etc ... for my "rapid heart rate" episodes. I saw another cardiologist -- who looked at the same results -- who added the tilt table test to confirm I have POTS and who then explained to me that the tacycardia really wasn't a problem for me. It was my bodies best attempt at correcting my drop in blood pressure. So I stopped while I was ahead. I do wear compression stockings when I am having very bad spells and I electrolytes have also helped me in the past. Each of us seem to find a path that "feels right" -- keep on keeping on until you find something that seems to fit for you. And remember what may work today ... may not work next year -- indeed it is always an adventure. Good thoughts, EarthMother