babettess

Hi Lisa, Congratulations on the arrival of your new baby girl. She is absolutely precious! God is truly Great!! Sorry, but I don't have much help with your chest pressure and shortness of breath. I have both of these symptoms myself on almost a daily basis and the doctors have not been able to tell me what is causing them. It is frightening when you feel you have to put an effort into breathing though. Take care of yourself. You will be in my thoughts and prayers. Oh and your blog is very inspirational. I have enjoyed it immensely. Babette

Hi Firewatcher, I too have the numbness/tingling in my hands and feet. I have been checked for small fiber neuropathy and other neuropathys with a QSART and an EMG nerve conduction test. Both were normal(other than showing that my nerves fire very rapidly). I have found that the tingling in my feet can be relieved by massage in my hip/buttock area and that the tingling in my hands is relieved by massage of my neck. My mother is a massage therapist and she knows right where to work on to get the tingling to go away. I also have fibromyalgia and I guess somehow when my muscles are inflamed they press on nerves that cause the numb/tingly feeling. When she relaxes the muscles by massaging them, they must decrease in inflamation and this reduces the pressure on the nerves. However it works, I sure am thankful that it does. Best wishes that you get good answers to this annoying and sometimes scary problem. I know you have had a hard week with your pilates instructor still trying to do you in. Take care of yourself and I hope you feel better soon. Babette

Hi Mae, I'm so sorry your visit didn't go better. Hopefully after your tests he will be more understanding. The 24 hour holtor will give him a good idea of what your heart is doing and the TTT will be much more accurate than having your BP checked laying down and then standing up. Hang in there. Just wondering-Is a NASTY doctor who knows about POTS better than a NICE doctor who knows nothing about POTS? Or is it the other way around?? I'm still on the search myself for a NICE doctor who KNOWS about POTS. I'm interviewing doctor #3 in a couple of weeks to see if he meets my standards. Riding that rocking boat with you, Babette

I would be thrilled to get IV fluids! I struggle to get in 24 oz. of liquids a day due to my swallowing difficulty. I am definately going to check into it. Glad to hear that it does help. Babette

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes 2. Have you ever been diagnosed with EDS or suspect that you may have it? Yes 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No 5. Have you ever been informed by a doctor that you have low blood volume? Yes with a hemodynamics blood volume test 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes 8. Did your POTS arrive suddenly? No but severe flares have 9. Is your skin pale? Yes 10. Please the top 6 worst symptoms that you experience with POTS: Lightheadedness/off balance feeling chest/neck pain & tightness shortness of breath exercise intolerance fatigue tachycardia

Dairy products seem to set off my POTS symptoms and my IBS. Perfume,overly fragrant smells and cigarette smoke give me headaches and make me cough.

I also have a Vit D Deficiency. I took 50,000 IUs weekly for 8 weeks and then switched to 50,000 IUs monthly. After a three month switch to monthly dosing, my Vitamin D level went back down to where it was before I started taking the supplement. So as of yesterday, I am back on the 50,000 IUs weekly again and will have my level checked in 3 months. I am also very sensitive to medicine but haven't had any problems on the supplement. I take the prescription kind that is green, shaped like a football, and filled with liquid. ( I haven't picked up my new prescription yet so I don't know the manufacturer.) I cut a hole in the end and squeeze the liquid out into a small cup of orange juice. The liquid is like an oil and I find it to be tasteless. (I have a swallowing difficulty so I can't take pills.) I did find that I had less muscle pain when my level was at it's highest (which still wasn't in the normal range.) For your information: Normal levels at the lab I go to are: 32-60. My levels were 14 when the VDD was found, 28 after 8 weeks of 50,000 IUs weekly, and then 13.8 after 3 months of 50,000 IUs monthly. So I am definately not worried about taking too much at this point. Studies have proven that Vit D is one vitamin that we definately need to have enough of or risk future health problems. I hope you do well with the supplement. Babette

I wish I knew, too! Hope you feel better soon!! Babette

Glad you're home but so sorry you had to go through that!!! Take care of yourself!! The 24 hour urine catch for catecholamines at least doesn't require needles or blood! You just have to collect your urine for a 24 hour period. I had this done about a month ago. It measures the amount of the hormones epinephrine, norepinephrine, metanephrine, and dopamine in the urine. Hope you recover quickly! Babette Here I searched for you--(Copied and pasted from http://assets.aarp.org/external_sites/adam.../1/003613.html) Catecholamines - urine Definition Catecholamines are small molecules made by nerve tissue (including the brain) and the adrenal gland. The major catecholamines are dopamine, norepinephrine, and epinephrine. These substances break down into other compounds, which leave your body through your urine. A urine test can be done to measure the level of catecholamines in your body. Catecholamines can also be measured with a blood test. See: Catecholamines - blood Alternative Names Dopamine-urine test; Epinephrine-urine test; Adrenalin-urine test; Vanillylmandelic acid (VMA); Urine metanephrine; Normetanephrine; Norepinephrine-urine test; Urine catecholamines; VMA; HVA; Metanephrine; Homovanillic acid (HVA) How the Test is Performed For this test, you must urinate into a special bag or container every time you use the bathroom for 24-hour period. On day 1, urinate into the toilet when you wake up in the morning. Close the container tightly. Keep it in the refrigerator or a cool place during the collection period. Urinate into the special container every time you use the bathroom for the next 24 hours. On day 2, urinate into the container in the morning again when you wake up. Label the container with your name, the date, the time of completion, and return it as instructed. For an infant: Thoroughly wash the area around the urethra (the hole where urine flows out). Open a urine collection bag (a plastic bag with an adhesive paper on one end). For males, place the entire penis in the bag and attach the adhesive to the skin. For females, place the bag over the two folds of skin on either side of the vagina (labia). Put a diaper on the baby (over the bag). Check the infant frequently and change the bag after the infant has urinated. Empty the urine from the bag into the container provided by your doctor. Because lively infants can cause the bag to move, this procedure may take a couple of attempts. Extra collection bags may be necessary. When finished, label and return the container as instructed. How to Prepare for the Test Acute stress and vigorous exercise may affect the test results. Foods that can increase urinary catecholamines include coffee, tea, bananas, chocolate, cocoa, citrus fruits, and vanilla. Avoid these for several days prior to the test. Certain drugs can also affect test results. Your health care provider may tell you to stop taking certain medicines before the test. Never stop taking medicine without first talking to your doctor. The following drugs can increase catecholamine measurements: Acetaminophen (Tylenol) Aminophylline Caffeine Chloral hydrate Clonidine Disulfiram Erythromycin Insulin Levodopa Lithium Methenamine Methyldopa Nicotinic acid (large doses) Nitroglycerin Quinidine Tetracyclines Drugs that can decrease catecholamine measurements include: Clonidine Disulfiram Guanethidine Imipramine MAO inhibitors Phenothiazines Reserpine Salicylates How the Test Will Feel The test involves only normal urination, and there is no discomfort. Why the Test is Performed The test is usually done to diagnose an adrenal gland tumor called pheochromocytoma. It may also be used to diagnose neuroblastoma. Urine catecholamine levels are increased in most persons with neuroblastoma. The urine test for catecholamines may also be used to monitor those who are receiving treatment for these conditions. Normal Results All of the catecholamines are broken down into inactive substances that appear in the urine: Dopamine becomes Homovanillic acid (HVA) Norepinephrine becomes normetanephrine and vanillylmandelic acid (VMA) Epinephrine becomes metanephrine and VMA The normal ranges vary from lab to lab, but in general are as follows: Dopamine: 65 - 400 mcg/24 hours Epinephrine: 0.5 - 20 mcg/24 hours Metanephrine: 24 - 96 mcg/24 hours (some laboratories give the range as 140 - 785 mcg/24-hours) Norepinephrine: 15 - 80 mcg/24 hours Normetanephrine: 75 - 375 mcg/24 hours Total urine catecholamines: 14 - 110 mcg/24 hours VMA: 2 - 7 mg/24-hours Note: mg/hour = milligrams per hour; mcg/hour = micrograms per hour. What Abnormal Results Mean Elevated levels of urinary catecholamines may indicate: Acute anxiety Ganglioblastoma (very rare) Ganglioneuroma (very rare) Neuroblastoma (rare) Pheochromocytoma (rare) Severe stress Additional conditions under which the test may be performed: Multiple endocrine neoplasia (MEN) II

Hi Michele, You are going to have a great time!!! I have just a couple other suggestions that I usually try to do when I go anywhere-just as precautions!!! Take twice the amount of medicine you need and separate it into two different containers. Pack the two different containers in two different places. That way if you lose your purse or drop your pill bottle and spill your meds all over the floor you still have back up medicine. Learned my lesson on this!!! Take plenty of food and drinks with you in case you get stuck in traffic. And to ease your mind a little, make sure you take a list of your current meds and a brief medical history with you in case you get to visit your old ER. If you're feeling good, you might want to just drive by it and wave!!! Don't forget your moon boots!!! Have a great time!!! And be sure to let us all know how the trip goes. Babette

I can't help much with your quandry except to tell you when I was at my sickest, lowest point of my POTS - my D-Dimer was also high and the doctors never found out why. They did say that false positives happen. My doctor looked more for a pulmonary embolism than a deep vein thrombosis. Have you been checked for a pulmonary embolism? The people who have taken me the most seriously are my regular family doctor and his nurse practitioner. They had no idea about POTS so they were definately looking for the wrong thing, but they ordered numerous tests and did at least try to figure out what was going on with me. I finally got the POTS diagnosis from my cardiologist about 7 months after I got sick. I was let down in him for taking so long to diagnose me so I went to Cleveland Clinic to get a second opinion. Remember that doctors work for you. If you haven't found one that you trust-keep looking. Call around and ask to talk to a nurse at each office and ask if the doctor is familiar with your diagnoses. Keep searching and remember you are your own best advocate. And share the DINET website with your friends/family so they can learn a little about what you are going through! I hope that you feel better and that you find a doctor that you trust soon!! Babette

Hi, I currently take a small dose of Metoprolol and am pleased with the results. Metoprolol is a generic beta blocker (BB) that is supposed to be taken 2 times a day. My doctor and I decided to use a lower dose and take it 3 times a day. So I take 12.5 mg 3xs a day instead of 25 mg 2xs a day like they originally wanted me to take. It has really helped with my heart rate and shortness of breath that I get when my heart is too fast. I seem to tolerate small doses only of meds so I always start out taking the smallest dose possible. I had been on Propanolol (a BB) about 20 years ago for about 2 years and then Atenolol (another BB) for about the last 20 years. I LOVED the Atenolol and am going to try to get my doctor to let me try it again. I only took 1/4 of a 25 mg pill once a day and it worked wonders. My doctor had me stop it about 9 months ago because we thought I was having an inner ear reaction to it, but I am still having the inner ear problems so it wasn't the Atenolol. I tried Dialtiazem (which is a calcium channel blocker {CCB}) about 8 months ago and got severe neck pain, my lower legs swelled and I noticed blood pooling for the first time while I was taking it. This was before my POTS diagnosis. My cardiologist actually said that CCB are not good for people with POTS and I agree. I felt horrible on it. I definately won't try any other calcium channel blockers as I also had a reaction to one about 20 years ago in between taking the Propanolol and the Atenolol. I do think that the Metoprolol that I am currently taking is causing the undiagnosed chest pain that I have. This chest pain started within 36 hours of my first dose of Metoprolol. My cardiologist says I can pick what I want to put up with -the chest pain or the rapid heart rate. I picked getting rid of the rapid heart rate so I put up with the chest pain. Everyone's body is different so you will have to use your and your doctor's judgement on this issue. I know that BB's can cause problems in people with asthma. Just check out your risks for taking it with both your doctor and pharmacist. Personally I find that I am much more miserable without my beta blocker. Hope you find a good medicine that works well for you and that your move is enjoyable. Babette

Suzy, WOO-HOO!!! I would name your chair "Spot"! No just kidding- how about "Robin" cause you will be free as a bird!! I'm sooooo happy for you! Babette

Susan, I will be praying for you, your daughter and your family as you go through this rough spot. Sara is blessed to have you as her mother. Take care of yourself. Please tell Sara how many people are lifting up prayers for her. Babette

I agree with Broken Shell. I have also seen two different Chiropractors and ended up worse after each one then I was before. I am working with a physical therapist now and getting good results with my pain. My friend who is a physical therapist says the difference is a chiro forces you into alignment and a PT strengthens the muscles that keep you in alignment. I prefer the strengthening to the forcing. Best wishes that you feel better! Babette

Dani, I sooooooo understand!! I am actually what I call "phobic" of medications. I have had so many weird reactions to them that I feel better not taking them than I do taking them. I have panic attacks every time I force myself to try a new medicine. And of course then I can't tell if the weird feeling is because of the medicine or the panic attack. Since being diagnosed with POTS, I have had to MAKE myself try new medicine because I am determined to do everything I can to feel better. The only way I will try a new one though is if I can go to my mom's house and have her sit and watch me after I take it. She lives much closer to the hospital than I do. Sounds stupid since I am 43 and have 3 children and a husband of 25 years and have no other fears or anxietys. I get the prescription from the doctor for the smallest dose available, get the medicine, get a printout about the side effects from the pharmacist, get the Benadryl ready and educate my mom about what could happen to me. Then I pray and take the smallest dose imaginable. And wait..............while she reassures me that I am fine. Hope you know now that you are not alone. My fear comes from taking Verapamil and having hallucinations with it approximately 20 years ago. I have never gotten over the fear. I also reacted to Zoloft in a negative way as it increased my anxiety about a hundred fold and kept me in a constant state of panic. I was taking 6.25 mg of the liquid and still having the anxiety and some other side effects. I had tried it because I have Fibromyalgia and it was supposed to help with it. Nope, it didn't. I am now waiting to hear back from Cleveland Clinic as to the results of all the testing I had up there last week. I already know they are going to add new medicine and I know I will have to force myself to try it. Hope my mom is up to company. Please make sure you let your doctor know about your concerns and any reasons for the concerns(such as previous reactions) and also your pharmacist. A trusting relationship with both of them should help alleviate some of your anxiety. I was helped greatly by a beta blocker and am very glad I gave it a chance. We are all different in how we react to everything in our world including medicine so it's ok to be hesitant. You can ask your pharmacist if you can cut the pills to take a smaller dose. It will depend on if the pill can be cut or not. You might have to call your cardiologist and just be truthful with him. Best wishes that you will feel better. Please PM me if you would like to talk more about this fear. Babette

I too feel bad most of the time. I did learn something very important from my testing at Cleveland Clinic about my heart beat that seems to explain why I feel worse at some times. While I was still connected to the 12 lead EKG monitor recovering from my TTT, I experienced a major abrupt horrible worsening of my symptoms. The tech marked the ekg strip and when the dr. looked at it she commented that before the episode the AV node in my heart was controlling my heart rate. (This is where your heartbeat is supposed to originate from.) When I started feeling bad, my sympathetic nervous system started controlling my heartbeat. The Dr. said that the two were battling over control of my heartbeat. So no matter what my heart rate is, I definately feel worse when the sympathetic nervous system is over reacting and trying to control things. This was recognizable on the EKG strip as the dr. showed me the differences. I don't have any more info on it other than knowing that's what happened. I don't know why it happened or what we are going to do about it, but I will be asking when they call me with the full testing report. Just wanted to share that. Of course I can't speak for anyone else and maybe this is only the case with me. It sure explained my feel bad episode though. Babette

Ernie, Are you saying that a lack of potassium can cause swallowing difficulties? My potassium is usually low and I have swallowing difficulties. How does the deficiency cause the difficulties?

I had a high level of histamine in my 24 hr. urine catch. Is that the same as methyhistamine? I read where a high level of methyhistamine can indicate Mastocystosis. Normal high level of histamine is like 50 and mine is 151. I have had a RAST test and it was normal. I'm not really allergic to anything other than penicillin, ceclor and ibuprofen. I can't tolerate dairy products but the RAST test says I'm not allergic to milk. Can I have mastocytosis but not really have allergies?? I don't really have any skin problems other than Rosacea. I do feel better after taking Benadryl or Atarax but I've always thought maybe they just calmed me down. My doctor at Cleveland Clinic told me to see an endo to have it checked out. Just wondering...... Thanks, Babette

Very interesting!! I have only tried green tea twice and both times I got nauseated. I was thinking of trying it again in case those two times were just coincidences, but now I don't know if I should or not. I love regular decaf tea and am not bothered by it or herbal tea. I have never heard of the nitric oxide. I will look into it more. Thanks for the info. Babette

Hi Gary, Welcome to the forum. I am also new on here and also live in MD (in the country of western MD). (Hence Mdcountrygirl) What part of MD are you in? Thanks for the interesting information on Lyme Disease. I haven't been tested for it but several people have told me I should get the testing. I have panic attacks that I have always said are caused by something physical and not mental. The drs used to always dx me with PA when my HR was up and I was having trouble breathing. Now I know that POTS is the culprit. I also have days where I feel relatively normal and I do as much catching up on those days that I can. Then I have days where I can't even get out of bed. I am helped by Benadry and found that out by accident as I took it before a CT scan and realized I felt better. I just returned from testing at Cleveland Clinic. I am hoping to get some good answers when I get the full report. Good luck with your treatment. Let me if you start on any POTS research as I would be very interested in participating. Babette

Hi Everyone, I made it through my testing at CC, but just barely!! Overall I think I will get valuable information, but the tilt and the hemodynamic tests were difficult to get through. I don't have all of the results yet. I will get the full info at the end of the week. Here's what I do know: The echo stress test showed that my heart is healthy. The technicians who administered this test were wonderful and I'm glad to have had it done so I don't have to worry about my heart having problems if I exercise. I don't know the results from the QSART yet. The TTT was very difficult for me as usual. I made it through the 2 minutes at 30*, the 2 minutes at 45* and 5 minutes at 70*. I felt horrible as soon as they started tilting me. Of course my HR went up over 30 points immediately and never came back down throughout the whole test. My BP did drop which didn't happen in my first TTT. At 9 minutes total, I asked the nurse to put me down and at that time my BP was 90/55. I did not pass out. Thank goodness!! Dr. Fouad looked at my test while I was recovering from it. She is absolutely wonderful and I would recommend her to anyone. She found on my heart rate rhythm strips that my sympathetic nervous system and the AV node of my heart are battling back and forth as to which one controls my heart beat. I get symptoms whenever my nervous system kicks in. She will know more after looking at all the tests. The blood volume test preliminary results say I have 7% less blood than I should have. The hemodynamic test was the worst. I had to lie still for over an hour total after already lying still for the blood volume test. When the nurse tried to sit me up I felt horrible. I felt much worse than the TTT. They were unable to sit me up any higher than 45* and I was supposed to be at 70*. They also couldn't lower my feet because I was too symptamatic. My heart was going crazy and I felt so horrible. After the test was over I was shaking horribly and very weak and woozy. NOT a fun experience but hopefully I will get good information from it. I don't think this test would have been as bad if I would have had a good nurse. The one I had was not very compassionate and stressed me out so bad that I think she was part of the problem. She lied to me several times about various things and I personally can not tolerate lies. The Heart Rate Variablity was a breeze. No results yet from it. I will hear from either the dr. or his nurse at the end of the week with the full report. Even though I had some symptoms and I'm still trying to recover, I would go have the tests again. Just knowing why I can get so symptamatic so quickly was a relief. I still have to see a rheumy to R/O EDS and a endo to see why my histamine level was so high when they tested my urine histamine level. Should I be seeing an endo or an allergist about the high histamine?? Does high histamine in a 24 hour urine suggests MCAD or mastocytsis? Thanks for all of your input. If anyone would like more info about the tests at CC, please let me know. Babette

Hi Maxine, I too have difficulties swallowing. I have to take tiny sips whenever I drink liquids and I frequently choke on my spit. I have to concentrate on each swallow to help prevent choking. Currently I also have a cough that is producing a foul tasting phlegm. I haven't seen a dr. about the cough as of yet. I actually think a have a touch of bronchitis cause I feel the same as I always do when I get it. I find it very interesting that Ernie asked if the swallowing difficulty is caused by your EDS. I am in the proccess of getting an appt. with a rheumy to rule out EDS. I have seen neurology and ENT and neither of them can figure out why I have trouble swallowing. So I will definately check it out with the rheumy. Best wishes that you will feel better soon. You are not alone. Babette

Congratulations!! I wish you and your new addition good health and a quick recovery! 25 years ago I had my first daughter via emergency C-section at 24 weeks because of eclampsia. I actually had the seizures and was critical for 5 days after I delivered her. They didn't think my daughter or I would live. It was great that you were further along and also that you didn't go into the seizures. The doctors gave me "enough mag sulfate to knock out a horse" and it wouldn't stop the seizures. I was unconcious for 5 days so I don't know what the medicine made me feel like. Even after I was alert and awake I had to stay still and not be exposed to any stress. Sounds like you have a good team of doctors that are taking good care of you and your son. My daughter only weighed 1lb 6 oz. and was in the hospital for over a year before we ever brought her home. From the way it sounds your son is doing great and should be home soon. Take good care of yourself so you will be well rested before your son joins you at home. I'm sure you are so excited and can hardly wait to get him in your arms in your own home. PM me if you would like to talk more about your experience. Please keep us all updated on Preston's progress. OH-What did he weigh???? You and your family are in my thoughts, Babette

Hi Broken Shell, Thanks for your response. I will let everyone know how it goes. I am going to a cardiologist at CC. I wanted to tell you how much I like your name. Shells whether broken or not are beautiful and unique. Babette