nmorgen

I usually just snack through the day and have my biggest meal at night anyway. I just can't seem to eat during the day. I also snack after my meal. I guess I'm just a grazer. The change for me would really by the type of food I would need to eliminate. It can't be any harder than eliminating wheat/gluten. That was extremely hard for me. It took me 6 months to completely eliminate it from my diet. I still get glutened occcasionally. Which makes the POTs worse. I don't exercise regularly, just when I feel like it. I do walk 1/2 mile to the grocery store at least twice a week and I walk at least 2 miles to the train station every Saturday. This isn't to say I don't get POTsy, but I really have no choice. Our car is still in the US. When I get my hrm I will try the rower. I plan on starting slowly and hopefully build up to 30-45 min a day. Do I think it will cure my POTs? No, I don't think this will cure me. Hopefully it will make me feel better or give a little better quality of life. I've come to terms with this "POTs" disorder/disease. I can't say I'm happy about it, but I have accepted it. I believe that God gave it to me for a reason and if he wants me to get better, then I will, but if he doesn't I wont. I wasn't always this accepting of this disease/disorder, but then a friends little girl was diagnosed with DIPG and I learned what real suffering and heart ache was. I of course have done some "bargaining", I'm sure you know what I'm talking about. "God if this is the worse my family has to face then I'll accept this problem." I'm blessed with 2 healthy children and a husband that doesn't require me to work or have the house cleaned when he walks in the door. On good days I can take my kids to the park and watch them play or walk down to the river and enjoy nature. So I'm thankful for my life even with POTs.

I am going to try it. I want to wait for my new hrm before I really try to do anything strenuous. My husband has a rower and I think I might try that. We do have a regular stationary bike, but I'm not sure about that yet. I know that my POTs wasn't caused by deconditioning. I have had episodes of fainting and dizziness from my early teens. My internist told me to eat more salt and drink a lot. It never seemed to slow me down at all. A year before everything started falling apart for me I can honestly say I didn't do much. I was a stay at home mom, and I really didn't get that much exercise. I'm sure exercising more will help me. Almost 2 yrs ago I found out I was celiac, which has really helped me. I feel a lot better. Maybe eliminating the dairy and extra grains will help me. It doesn't sound like a lot, but I know it is going to be hard. Especially eating no cheese . I'll keep everyone updated on my progress, good or bad. We shall see. The ultrasound of the abdomen...does anyone know what this is for? I have had my liver and gall bladder ultra sounded(is that a word? lol), but I have no idea what this is for? Has anyone else had this done?

Well the diet reminded me of the blood type diet. I read this book a long time ago. I would basically eliminate dairy and grains. He told me that he thought it was probably genetically programmed for me to perform intensive exercise and my body wasn't working correctly b/c I wasn't getting the exercise my body needed. He also told me that I should eat lightly through the day and eat a bigger meal at night. That our bodies weren't meant to work and try to digest at the same time, thus pooling in the abdomin. I'm willing to try it, but I'm not coming off my medicine. He told me he didn't expect me to come off the medicine right away. Lol, like I would have stopped anyway. He asked how I felt during pregnancy(which I felt great). How I did when I pushed myself in walking or exercise. I get to a point I feel bad, but then I do start to feel okay. He told me that the vessels dialate when we start to exercise and that causes the POTsy feeling, but when we keep going our cardiac output increases. His theory was that if I exercise for 30-45 min a day that eventually my beta cells wont be as receptive to the norepinephrine and I wont have the problems. He told me that my answers were good signs that the diet change and exercise would help me feel more normal. I am scheduled to get a stress test, echo and some kind of ultrasound or something for my abdomin to see if I have blood pooling there. I'm not sure about the last one or if I understood him correctly. Has anyone else had this test or something similar?

LOL, sorry I didn't run spellcheck!

Hi eveyone I thought I would share with you a little of what was said during my appointment today. I finally got an appointment with a cardiologist who speaks English. He basically just spoke with me today and we didn't do any kind of exam or anything like that. Completely different than what I'm used to. Anyway, I tried to explain to him about the POTs diagnosis and he is going to try and get copies of the tests from my old cardiologist back in the States. He told me that I need to start working out at least 30-45 everyday. Intensive cardio. I actually started thinking about the Dr Levine exercise thing. Now I'm thinking that he thinks I'm just deconditioned. He also told me that he wanted to modify my diet. It sounded like the blood type diet. He told me that he would like for me to come off of my medicine. I know that exercise helps and I'm sure I could mprove my diet. Do any of you really think that this could be the problem? I just need more exercise and a better diet? I'm willing to try, but I'm not willing to come off my medicine. I don't know, it feels weird going to someone who doesn't seem to actually believe that this is a real problem. He told me that he knows I don't feel well, but that i'm not really sick. It can get better and I will have a normal life. I think that would be fabulous! I wish that I could jump on that band wagon and it actually happen. I'm just a real skeptic I guess. Have any of you tried this and actually felt better or been able to reduce your medicine? Thanks. Thoughts and opinions are appreciated.

Hi, I can say that I haven't had too many problems flying. I'm not sure how long your trip would be, but I have flown 3 long haul flights from Europe to the US and back. Make sure you have a comfortable seat and drink plenty of water. If you are going to a different altitude(higher) or you think you might get anxious you should talk to your doc about medication that could help you.

I agree. Try to get a copy of the test results. I have PVCs, but not that bad according to my cardiologist and I can't Beta blockers. It showed tachycardia, but the dr didn't mention it b/c he had already diagnosed me with POTs and knew this would show up. It could be that your dr isn't mentioning the tachycardia b/c it isn't new and you both already know about it. I think they consider throwing some pvcs and pacs normal for everyone. So maybe he/she meant normal considering what you have.

Hi Issie, Are you having the hot flashes at any other time or just during/after sex? If you are having them at other times you may want to have your hormones checked. I do tend to feel worse around my menstrual cycles. I do have the pulse problem during and right after sex, but I don't have any of your other problems. I usually feel relaxed and sleepy afterwards. As my brand new cardiologist(as of today) told me, you haven't died yet, so I doubt this will kill you, lol. Maybe you should relax and meditate beforehand. It may just be that you are anxious about how it's going to affect you. I'm not sure what medicine you are taking for you POTs. I am on clonidine, and my cardiologist(diagnostic back in the States) told me that I could take a little bit more if I am feeling really POTsy. That has helped me get over some really bad episodes. You could try talking to your dr and see if you can take a little extra medication when you know your going to have sex. I hope you get this worked out. I know that has got to be tough. Good luck on finding an answer or at least a solution that helps.

Hi ~ I've had a lot of palpatations separate from episodes of pre-syncope and more recently I've had them with pre-syncope as well. My best advice would be to see your internist or primary care doc -- or if you have a good cardiologist you could touch base with them again to report and update them on how you are doing. It may be that they do a 24 hour holter to see just what is going on - a glimpse of a day in the life kind of thing. Mine showed runs of atrial tachycardia -- not terribly long ones - maybe 10 beats or so a few times and then a baseline of sinus tachycardia with an avg. heart rate of 100. Some PVC's thrown in there for good measure lol... I got put on 50mg of Metoprolol with no discernable improvement -- just normal daily activities have my heart-rate watch read 120's....any exertion such as walking uphill -- 150's. I'm not sure my cardiologist is the one for me as I've been working on my b/p issues and symptoms with this one for three months and am going nowhere fast. Yesterday at work got faint-like and nauseated - spent the better part of the evening in bed with a low b/p....90's over 60's........Yet most of the time my b/p is way too high....diastolic frequently above 100 or 110...... It can be frustrating for sure to get the tests you want done -- and frustrating when your case is not an everyday occurence.....I have that hypermobility syndrome or EDS-HM and it's crazy for sure. Good luck to you -- hopefully you aren't troubled by your symptoms for long or if you are you get the answers you need! Wow! This sounds just like me. Down to the horribly high diastolic. I get these occasionally and it can be kind of scary to have both of the symptoms at once. It wouldn't hurt to go and see your dr and check to see if anything has changed. Hopefully it is just a sign that you are pushing a little too hard. Good luck and keep us updated.

I have the hyperadrenegic POTs. My heart will race afterwards, but I just relax and my heart calms down. What sort of problems are you having. Sex usually makes me feel better even if my heart races a little(I think this is normal for everyone).

I am so glad someone asked this question. I have read that it helps to sleep on an incline, but I just can't. I have tried and even when i fall asleep i constantly wake up with neck and back pain. Does anyone know exactly how sleeping at an incline is suppose to help with blood volume?

120 washing dishes doesn't sound that bad to me. Mine is about that sometimes a little higher cooking dinner and washing dishes with medication. My hrm gave me anxiety before I was on medication b/c the alarm was constantly going off ie. walking to the bathroom 165. I have noticed that if I keep on doing things my heartrate will eventually go down and so will my blood pressure. That is why now I really try to push myself. I think that I have had this most of my life. I used to have a racing heart and fainting when I was younger. My internist told me to drink a lot of fluid and increase my salt intake. It helped, but as I got older my blood pressure got higher and the spikes I get from the hyper POTS just got too high. I think that was when a lot of the other symptoms showed up like the tremors/muscle spasms, which really bother me. I've accepted that I have this "thing", but I'm not going to let it run my life anymore. When we went to Disneyland Paris I still rode the roller coasters and had a great time. I do have to say that The Tower of terror was horrible and I wouldn't recommend anyone ride that thing.

I have had something similar happen to me. My heart just felt funny and my face felt like it was burning. Th weird whooshing in my ears like I was in a tunnel travelling very fast. I didn't completely lose my sight though it did seem like I lost my peripheral vision. It was one of my first symptoms while walking or standing. I have had it once while laying down trying to go to sleep. My ENT and neurologist told me that it was lack of blood flow to the brain. I only passed out 1 time from it. I have only had it happen twice since taking clonidine. I take more medicine and try to just lie down and relax. Oh I also cough. For some reason the coughing seems to regulate my heart a little or at least get more oxygen to my brain. It usually passes after about 5-10 min. I hope you start to feel better. I understand how scary these particular episodes are. Good luck with the drs and I hope you feel better.

The arm movement really sets my tachy off. I think my body says "Oh brother, heart you need to pick up the pace because she is trying to use her arms and you know it's hard enough to get oxygen up here to us in the brain", lol. I'm glad your getting good use out of your hrm. I started using one before I was put on medication and it gave me anxiety, but I can also see that the medication has really worked to calm things down. Really good tool to use to change your habits. It really is the best way to figure out what triggers your symptoms.

My chest feels tight and crackly in the morning and hurts when I take a deep breath. It feels like I have had a major asthma attack and not taken any medicine in a few days. Just feels like there is something in them. I don't really cough a lot, but I try to take really deep breaths to open my lungs. Maybe I could be having asthma attacks in my sleep? I am looking at trying to find a doctor. Thanks for all of the advice. I really appreciate it.

I know this is an older post but I thought you might be interested in this article. http://www.everydayhealth.com/healthy-livi...anscript-1.aspx It's really spread out b/c it's an interview, but I didn't realize how ineffective the tests were for Lyme disease. They tested me at Mayo, but I don't know which test they used. I know I have been bitten by ticks. I have pulled them off. I unlike all of you feel absolutely horrible on antibiotics. I hate getting a UTI or any other infection b/c the antibiotics make me feel so bad. I know it could be the infection itself, but shortly after taking the antibiotic I feel really bad and my POTS gets worse. They told me that I have the hyperadrenergic POTS and was wondering if anyone else with this type of POTS actually feels better on antibiotics.

I can't watch tv or anything moving straight on, but I tilt my head and can watch with my "good" eye. I didn't even realize I was doing it until people started pointing it out to me. I also have the swaying feeling. I constantly rock and it makes me feel more "normal". This is all subconscious I don't even realize that I'm doing it. Just my bodies way of compensating I guess. If I try to stay very still I tend to get nausseated. Who knows, maybe if you try using your "good" eye and rocking it might help with your dizziness. One good thing my brain did on it's own, lol.

Thanks for all the responses. I'm not happy you are all experiencing the same thing , but I'm relieved that I am not alone. My normal pulse pressure is only 25-30. I was just wondering if anyones doctor was concerned by this. I haven't seen my doctor in over a year so I really don't have anyone to ask. I am trying to find a doctor that knows a little about POTS and that speaks English, but I haven't been able to yet. I'm just concerned and really have no where to turn at this point. Unfortunately, I left the country shortly after diagnosis and I have a lot of questions. I have noticed that my lungs are filling with fluid at night while sleeping. Do any of you get this as well? I wish I could sleep at an incline, but I have a fused back from scoliosis and it is just too painful. Could I be drinking too much water at night? Thanks for all responses

I was just wondering how many of you get a low pulse pressure and what your doctors advice is? When I am POTSY My diastolic climbs and my pulse pressure reduces to 15-20 on rare occasions lower than 15. It makes me feel horrible. I'm just wondering if anyone else has this happen.

Thats good that you had a good day today. Glad to hear that. I had an okay day, but it was really hot and our new air conditioner doesn't work very well grrrr. I get the whole throat closing up on me, and I feel like my face is burning. My face usually will get really red and rashy looking. I have wondered if I might have the mast cell or just really bad allergies. A lot of times I also feel like I'm suffocating. When that happens I now that my pulse pressure is really low and its time to take medicine and lie down. With my POTS my blood pressure doesn't drop. If it does its just the systolic, but my diastolic increases. My pulse pressure narrows from 15-20. I don't speak much french, which is my problem finding a doctor. It's been over a year since I've seen a cardiologist and 1 1/2 since I've seen a pulmonary doctor. I just need to find good ones that speaks English.

I'm pretty sure the utricle damage allowed me to catch the blood pressure problems. Most people can't feel a change in blood pressure, but I can. When my blood pressure drops I feel a pulling backwards sensation. It's really weird. That being said, it probably does have something to do with it. It would be interesting to see how many of us have ear problems. I'm suppose some of us that have POTS secondary to something else may not have this as a cause. But it would be interesting to find out. The doctor I spoke with at Mayo told me that there was nothing I could do until they learned how to regrow nerves. I can't remember his specialty, I had never heard of it before, but good grief he was the most expensive doc I saw at Mayo.

I actually have this same thing. It looks like everything is shaking. I have it everyday. Mine has never gone away. I mentioned it to my neurologist and opthamologist, but neither could see anything and they didn't suggest that they were little seizures. I mentioned it when I went to Mayo and they didn't seem to think much of it either. I thought it was just part of my muscle spasms/tremors.

Sorry to hear about your problems. I'm just curious if you have tried cutting out gluten? When I was eating gluten I would get really sick. Also, last year I had a problem with my liver. They thought I had hepatitis. Get a juicing machine and drink beet juice. It really helps the liver. I know it helped me. If you are eating all low-fat non-fat I hope you are taking a supplement like flax seed or fish oil. Your body really does need the fat. I hope the doctors can find out what is going on or can at least help you.

Hi Lieze, Yes, I live near the lake. We are in a small town about 18 miles North of Geneva. Thanks so much for trying to get information for me. I really appreciate that. I have tried the Xanax and it did seem to stop the panic feeling. I too had those feelings of dying in my sleep. I would stay awake until I could no longer keep my eyes open. I was literally terrified of going to sleep. My first real sign of POTS had me in the ER, but they thought I had a blood clot. A few weeks later my husband woke me up because my heart was racing(140 bpm). I have the hyperadrenergic and I have a lot of my symptoms laying down, which made me think I didn't have POTS at all at first. I can now tell the difference between my POTS hyper weird brain fog tachi self and my true anxiety/fear. It is still terrible no matter which one I'm having.

I think the supplements will help you. I have asthma so I am used to having that not being able to breathe feeling. One other thing I forgot to mention was when the tremors start I will take yoga breaths and stretch. I found that this helps when the magnesium doesn't work.