briarrose

Ok ? I admit that I had no idea about this whole subject, kind of thought I was alone here with this problem. I certainly didn?t have a clue that they actually make a cream for these problems. Who would have thought. I doubt that I can take such a thing until they figure out which blood-clotting factor I have in my family. I?m sorry that there are so many other people that suffer from these symptoms, but I?m also relieved that I?m not alone, sorry. Thanks for everyone?s comments and suggestions. I think I?m going to go get that first book that EM recommended.

Thank you for all of your responses, I was beginning to feel alone out there with this problem. I truly never thought maybe it was estrogen or hormones but plan on pushing to have that checked with my labs next week. Jackie ? yeah I didn?t list some of those other things, but I suffer from those too. I have to wear a size larger pants when I?m premenstrual because of the bloating. I have experienced an increase in heartburn but thought it was more from stress. I always have the breast tenderness, my gyn just tells me to lay off the caffeine, because that makes it worse (?) Not sure, that?s what she says. For the record I?ll be 39 later this month. I can?t take the pill because our family has a blood-clotting component, which I haven?t been able to get doctors to test me for, it?s expensive and they have to send the tests across country (hey I?m insured for a reason.) Over a half dozen members of my moms family have died of pulmonary embolism/blood clots. I appreciate everyone?s comments. Nice to know that your out there. Steph

Thank you for your reply, any thought of why this is happening helps. Hadn't thought of the estrogen thing and I do have an endocrinologist. I am getting older, pushing 40. I asked my OB/GYN this week about it and she said that menopause is 50 not 40.

I don?t know what has changed, but every month when I?m premenstrual, I truly feel like I?m pregnant. I have all the same symptoms that I had when I was pregnant. I wake up in the middle of the night starving (even if I eat a big dinner), I?m nauseated constantly, I get cramps daily for a week before menstruation, I have increased acne, urination, I?m tired/fatigued, irritable and right before my period starts I?m extremely lethargic. Why has this become worse and exacerbated all of my POTS symptoms? I don?t want to feel like I?m pregnant every month Steph

Can't believe I found other people with ear spasms. I've had clicking in my ears since I was in elementary school. Actually went to my pediatrician and the day I saw him my ears were doing it. He put his stethoscope up to my ear and could actually hear them spasm too. I also have the tinnitus problem, but it's getting better since I'm not so anemic.

I just started taking Sonata, Dr. Grubb prescribed it. It helps me get to sleep fast and stay asleep for about 4-5 hours. I only take it on the nights that I need to turn around and be back at work or if I know that I won't be able to fall asleep. Good luck Steph

It's kind of hard to vote because mine is multiple. Yes I had dizziness and passing out during pregnancy (OB always said that was normal.) For years after that working out in the yard, under the sun, getting hot made me syncopal. One month after my flu vaccine 10/01 I developed the tachycardia -POTS. However, my mom was diagnosed with POTS 2 weeks ago. I believe that my cousin and Aunt also suffer from this infliction. So I have the pregnancy factor, viral (possible), Family history - definite, Oh and I am hypermobile and have said to have EDS. Hmmmm I have very fair skin, blonde hair, blue eyes. Steph

I understand that more women are recognized now then men, but that wasn't the case 100 years ago. More men were recognized and the same illness was called soldier's heart. Ohio's pollution problems http://www.theoec.org/pubs_airenerg.html http://www.ewg.org/pub/home/reports/brainf.../plants/OH.html

Yep this has been a problem for me many years. At times it got so bad that I was unable to move around for 3-5 days. Other times it's just in my knees, hands, elbows, etc. When I'm sick it hits me in all of my joints. I have visited numerous doctors, including 3 rheumatologists, many of which had me on experimental medications. I went from Oregon to New York to see a rheumatologist. Dr. Grubb was the first person in over a decade to treat my joint pain. Dr. Grubb started me on Neurontin (it blocks out neuro transmitters), which I almost didn't take. I know of Neurontin to be an anti-seizure medicine, but found out later that it's a multi-purpose drug It's been the first relief that I've experienced in over a decade. Thank god for Grubb! http://home.tampabay.rr.com/lymecfs/nfaq.htm Steph

I feel like I should be in an Erin Brokovich movie or Nancy Drew

Jackie Good point about the nuclear and chemical components. I agree with you. In fact I was thinking of all the oil wells that have contaminated the well water. There are at least 3 other people in my family with dysautonomia. My mom was just diagnosed last week and she was raised in Ohio. Steph

How many people with POTS are from Ohio or have visited there? I live in Oregon, but it's ironic that I was born in Ohio, vacationed there many summers as a kid and get my medical treatment there with Dr. Grubb. Steph

Janette thank you for your response. I would have to agree with you about having it since we were kids. I remember my mom always saying that I was double jointed and I am very flexible, I was good at gymnastics. But I was wondering if this was really EDS. I guess it doesn't matter too much. Steph

I use an omron too. You can order them through costco or get them at most pharmacy's. I use the one with the print out to cover me when I'm having memory lapses. It has been very reliable for me. Omron? Blood Pressure Monitor and Print-Out HEM-705CP Automatic Monitor with IntelliSense $79.99 Item # 462419 Plus Shipping & Handling Ok couldn't get the picture to add but I included the link. http://www.costco.com/frameset.asp?trg=pro...d=10021274&log= Although your blood pressure fluctuates throughout the day, no self-adjustment is necessary with the Omron? HEM-705CP as the monitor intelligently adjusts to your changing conditions. The IntelliSense monitor uses fuzzy logic intelligence to sense both your systolic and diastolic blood pressure values, and the result is personalized inflation with every reading. Arm discomfort and misreading due to improper cuff inflation are virtually eliminated. The Omron? HEM-705CP monitor uses the oscillometric method of blood pressure measurement. This means the monitor detects your blood's movement through your brachial artery and converts the movements into a digital reading. At the push of a button, the monitor automatically fills the cuff with air, starts deflation, then displays your systolic, diastolic, and pulse readings on an extra large display panel. The HEM-705CP also has the ability to print the measurement of the most recent reading along with any readings stored in memory. The numerical print-out will list all stored readings (maximum of 28 readings) starting with the most recent reading to last stored reading. Prints and Graphs Blood Pressure Measurement 28 Memory Storage Clinically Proven Accuracy Accurate blood pressure and pulse rate are just a push-button away - simply wrap the adjustable cuff around your arm and press start. In seconds your blood pressure and pulse rate are displayed on the large digital panel. Includes: 1 - Digital Automatic Blood Pressure Monitor with Print-Out 1 - Contoured Arm Cuff (fits arms 9" to 13" in circumference) 1 - Roll Printing Tape 1 - Illustrated Instruction Manual Monitor and printer each operate on 4 "AA" batteries (not included) Shipping will be calculated at checkout based on your ship-to location. Standard shipping is via UPS Ground. The estimated delivery time will be approximately 7 - 10 business days from the time of order. Express shipping is via UPS Air. The estimated delivery time will be approximately 3 - 6 business days from the time of order. Please choose your shipping method at checkout. Costco.com offers merchandise which complements our warehouse product selection. Therefore, most items available on our web site are unique to costco.com. Costco.com products can be returned to any of our more than 400 Costco warehouses worldwide. [Model 462419]

Thank you very much, I appreciate the support and offers of help. I thank god that I've found both this forum and the one at NDRF, it has been a life saver in my greatest times of need. Sincerely Steph

Can?t decide, at a loss as to what I should do. I went to a hematologist last week because of my low hemoglobin and hematocrit. I also have extremely low iron and saturation level; ok it?s practically nothing. I?ve been getting Epogen injections but without the iron to bind to it doesn?t really do any good. The hematologist gave me four choices: I can take continue taking intravenous iron Ferrlecit (which I started last week just to get things going), I can take IV Dextran, I can get a blood transfusion or I can see an OB/GYN about getting my menstrual cycle stopped. I would kind of like to take the Dextran as it?s only a 2-3-time treatment in a year, but I?ve heard how dangerous the side effects can be and I?m extremely sensitive to medications as it is. The iron that they are giving me right now is every week. I really don?t want to get a transfusion unless I?m dying. And because my family has a blood clotting disorder I don?t think hormone suppression is a good idea. I?ve never been able to take the birth control pill as it can cause blood clots in our family and I don?t want to get a DVT or die of a pulmonary embolism. Any other ideas or suggestions? I only have two more weeks to decide. Steph

Nina thanks for confirming that for me. I just wanted to be sure that I was telling the doctor the right thing and that he was wrong.

I saw Dr. Grubb last year and he thought that I had EDS III as one of the components of POTS. I saw a hematologist this week that said if I haven't been genetically tested for EDS that I couldn't be diagnosed with it. From everything I've read you can't test for all EDS, is that true or not? Steph

Tearose and MightyMouse thank you for your replies. Tearose, it doesn?t bother me about my information being out there. People shoot me emails and ask me questions all the time and I?m happy to be their for them as they are for me when I?m struggling. Sorry you didn?t find my post at the NDRF, I was simply stating that with this illness I?ve found that I own a second/third wardrobe (summer and winter.) Extra long johns, wooly socks, sweaters, jackets, vests (I usually wear 2-3 layers of clothes at work to stay warm.) In the summer, I bought extra lightweight clothes to keep me cool, summer dresses, tank tops, shorts, sandals and stocking-socks. MightyMouse, that is cool about the volunteer program that you used to be a part of. I realized last month when I was in the emergency department that I was too ill to explain to the emergency doctor what was going on with me. I relied on my ex-boyfriend to advocate for me and I?m glad that he was there. He went with me last summer when I saw Dr. Grubb and understood everything that Grubb explained, so he does well explaining to others. It doesn?t matter if I was having an emergency or just having a regular office visit, if I?m not feeling well I don?t do a good job explaining things to the doctor. Some of it is probably brain fog, usually hypotension and the inability to think! It?s nice to have someone along that knows everything and can explain for you. Steph

I?ve been thinking, uh oh?. Not always a good thing With everything that we?ve been though here (as POTS patients, NCS, EDS, etc.) we?ve had to learn to advocate for ourselves, not trust doctors because they don?t always know what?s best for us or don?t have the guts to tell us that they don?t know, so we have to keep track of our own medical records, research our own problems and inquire from others who experience things that we are told are not part of our illness (funny, I usually find someone or several someone?s that experiences the same symptoms as I do.) Anyway, my point is that we could start our own service, teaching others how to watch out for themselves in the medical community, asks questions and most of all advocate for themselves. When in doubt, keep looking. And never accept someone telling you that you?re crazy when you know better! Who knows you better than you do? Steph

I'm one of those POTS patients that are severely sensitive to medications. I take minimal or 1/2 the dose of just about everything. However, I take Imitrex for my migraines and not only dose it work great, I normally have NO side effects with it. As easy to take as a tylenol. 25 mg used to get rid of my migraines first dose, recently I've had to take a repeat dose of 25 mg in the first hour. Steph

Nina thanks for the compliment. Timbo your more than welcome, glad I could help. Steph

Timbo that helped. Here is a website I found for you. http://www.barrproductguide.com/php/index....x.php3?view=133

If you get asked to leave, tell them that it will be nice to have the day to consult with your attorney about labor issues!

I had a thyroidectomy nearly 20 years ago. After that I developed spasms in my throat (my voice would sound funny when I tried to talk, like someone was choking me.) I also had a barium swallow and endoscopy looking for causes. They could actually see my throat spasming during the barium swallow. They gave me valium to relieve some of these symptoms, it works pretty well. But that sensation was different than when I actually can't swallow. Rarely, I have periods of time where it's difficult to swallow, especially beverages. I have GERD and a hiatal hernia, so I just chalk it up to that. It always passes and thank goodness it's never been as bad as JacobyD's. Hang in there. Steph