briarrose

Hayley Many people, including doctors don't know what POTS is. I went to the copy print store and spent about $75.00 copying the best articles that I have. Then I put them in 1/4 inch binders and gave them to my doctors here in Oregon. It was worth every penny that I spent. The NDRF has a nice pamphlet that they sent me and I put that in the front. I have a couple of articles from DR. Grubb that have been very informative. That is the best way I have found to communicate to people about our illness. steph

Please see these articles http://home.att.net/~potsweb/POTS.html http://www.potsplace.com/ http://www.ndrf.org/ http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm http://www.cfids.org/about-cfids/orthostat...intolerance.asp http://pediatricnetwork.org/medical/CFS/be...ry/oi-intro.htm http://pediatricnetwork.org/medical/OI/

Frances Sometimes it helps to provide your family with information so they understand better. One of my favorite articles that is simply written can be found at the following website: http://home.att.net/~potsweb/POTS.html

Migraine You gave me a good laugh this morning I must say. I'm glad things are going well so far and tests are turning up negative. Please keep us posted and try to keep spirits up. I'm a single mom of 6 children. I just didn't write about all of them. My youngest daughter has been pretty healthy, accept she sneezes 50 x a day. She can sneeze 8x in just one go round. And my oldest daughter has been relatively healthy, minus a broken leg and allergy to thimersol. She just enlisted in the Marines and left last weekend. Well I'm heading to bed, talk more later. steph

Frances I was diagnosed with POTS 1 1/2 years ago. I have had tachycardia problems since 11/01. I have struggled with severe joint pain for well over a decade, among some other symptoms. The joint pain alone will put me in bed for weeks because it's too painful to get up and around. Feb 03 I was ready to quit my job because the tachycardia was too much and I was exhausted all the time. I have seen numerous internal medicine, rheumatologists, endocronologists, cardiologists to try and help me with some of my symptoms. I even traveled to New York to see a rheumatologist to help with my joint pain. She wasn't any help, just cost me a lot of money. I saw Dr. Grubb Last August for the first time. I travel from Oregon to Ohio to see him. I will continue to do so. One visit with Dr. Grubb and he did in one visit what I've spent 13-14 years trying to get, help with my joint pain. He was able to get most of my POTS symptoms manageable. I'm still able to work, I do continue to have problems and fatigue but we're working on it. I think it's harder to manage some of my problems because my symptoms are forever changing. I now struggle with very low blood pressure which wasn't an issue in the beginning. I know it's not completely up to Dr. Grubb. He gives my doctors here a game plan and they try to manage it every six months until I see him again. His nurse has been wonderful in the clinic, most times that I've called. (HINT - you need to ask for one of them that knows about POTS, they will gladly pass of the phone .) I know that some people haven't been as successful but it was 100% worth it for me to see him. I needed a game plan as well as the validation and not many people realize this, but there aren't any knowledgable trained doctors anywhere on the West Coast in this illness. I have recently heard of some doctors in California that have POTS patients, but my doctor here can claim that too. I don't think any of them received formal training on this syndrome. It's important to have a knowledge base other than MD behind your name. I'm not 100% positive but I would bet that Dr. Grubb sees more POTS patients than anyone else in the world, seriously. I think he's dedicated his life to us. steph

I have had leg pains, but not very severe. But I completely understand the pain in the groin and it does come in cycles. When I get that pain, I can't walk. Sorry I can't offer any advice on what to do, I just sit down.

Welcome Corina I'm glad that you found this website and hope that it is as beneficial for you as all of us. I enjoyed going bach through the search option and looking at past posts about problems. There are many websites that have information too. steph

I watch for my kids too. My mom has recently been diagnosed with POTS. The more they look at it, her and her sisters think that their mom had it too. At least one of my aunts probably has something like it, she just had 2 ablations on her heart this last year for her tachycardia. My youngest son has suffered migraines since he was 9 years old. The school would some times call me 3x a week to come get him, he vomits horribly with his migraines. My second to the youngest daughter has been suffering from stomach problems for about 3 years now. Some doctors say Irritable bowel, others say wheat intolerance. Who knows. My middle son is constantly dizzy. He used to complain as a child that he was dehydrated and said he couldn't walk through the mall. I laughed at him because I thought he was too young to know what dehydrated was. Now I kick myself for being so callous. My oldest child suffered many childhood strange illnesses. He had a high fever that they couldn't diagnosis then because they didn't know. But when I took him back to the doctor as a teenager, the doctor looked at his chart and said hey I remember this case and we now have a name for it - Parvovirus (50% of the society are said to have had this) CMV has infected 50-85% of adults in the US by the age 40. Most people don't even know they have it. 1 1/2 years ago, one of the guys at work got it and he was so ill that they put him on best rest and pain killers. It has different effects on everyone. CMV is a member of the herpesvirus group, which includes herpes simplex virus types 1 and 2, varicella-zoster virus (which causes chickenpox), and Epstein-Barr virus (which causes infectious mononucleosis). These viruses share a characteristic ability to remain dormant within the body over a long period. Initial CMV infection, which may have few symptoms, is always followed by a prolonged, inapparent infection during which the virus resides in cells without causing detectable damage or clinical illness. Severe impairment of the body's immune system by medication or disease consistently reactivates the virus from the latent or dormant state.

Over a year ago I started with this. I have now written Oprah about 4 times. I also sent letters to Primetime, 20/20, Newsweek, Time, Dr. Phil, my local news stations, etc. I've never really gotten anywhere but there is something to be said about group effort (if we all did it maybe they would pay attention.) Women's magazines would probably listen a little better.

OK Nina here's sending you a padded helmet to prevent your clutzy mouse accidents steph

First of all I'm not a doctor so let me take my best shot at this. Let's not get hypovolemia mixed up with anemia. You don't need a blood transfusion unless your hematocrit and hemoglobin are low. You can develop hypovolemia from anemia though. They can usually diagnose you with hypovolemia (low on fluids) if your blood pressure is low, you have orthostatic hypotension, you've been vomiting, diarrhea, excessive sweating or bleeding are the main causes. I have a standing order for IV fluids now if I need them. I've had such severe hypotension that they now say I've been suffering mini strokes. As for blood transfusions; they prefer to give epogen injections to increase blood count rather than blood transfusion. How long it lasts depends on the individual.

This is what I mean they use after surgery: http://www.orthobrace.com/fla/category/comphosiery.htm I was talking about post-surgical above, this is why http://www.activainfo.com/journalarticles.asp#postsurg But POTS patients are recommended to wear full length panythose/compression hose.

That's strange because I think that's the kind of compression stockings they put on you after surgery (top of thigh high anyway) to prevent blood clots.

POTSParent Sorry if this is too much of a visual image. I haven't been tested for a bleeding disorder yet. My family has a history of clotting disorders with many on my mothers side dying of blood clots. I had an insurance company for along time that wouldn't pay for me to have the appropriate tests done. I have horrible menstrual cycles. I bleed very heavy most months. I kept telling my OB/Gyn about it and I don't think they got it. After they started monitoring my blood count every week to give me Epogen injections, they finally got it I can't tell you how many times I've had to change my clothes a day because I bleed fast and heavy. I can't even run to the store for milk and back without soaking my pants. If they had listened they could have saved me about 3 years of suffering and now I have anemia with hardly any iron left in my body. Another thing that ticks me off about doctors. Steph

I'm like Jessica that my normal body temp is about 97.6. So when I'm normal at 98.6 or above, that is a fever for me and I can feel it. This past week I've been 99.8 and miserable.

Yep I've been running a fever most of this week, they documented it finally at the hematology clinic when I went for my iron treatment this week. But normally I get them about 8-10 hours into my shift at work, my face gets hot and I feel fluish. It's pure exhaustion. Have a great party and yep, I wish I lived close enough to come too

Flying is different for everyone and each time is a different experience. There are so many factors. What are your normal symptoms and why do you think your doctor said that? Does your doctor have other patients like you or anything that qualifies him to tell you not to fly, I haven't ever heard that before. Flying tends to exacerbate symptoms but can be somewhat curbed with preventative measures. Know this, you should start a couple of days ahead of time by hydrating up with gatorade and water, sodium can be helpful. While in flight try to get up and move around and do things to make yourself more comfortable. If you are flying with a companion maybe you can lift the arm between you and put your feet up on his/her lap. When you make your flight reservations you can tell the airlines that you have POTS/NCS/Dysautonomia and that you need to elevate your legs. They usually put you in one of the more leg comfortable places (aka behind the bulk head.) Take snacks, water, gatorade with you on the plane as well as your meds. If you suffer from NCS or hypotension you can ask the airlines to provide you with a wheelchair. If you suffer anxiety your doctor might be able to give you something to relax you while you fly. OK that's my 2 cents worth.

Hey Ernie Well Said and so true!

Hey Nina Thank you for sharing both of those articles with us. I'm going to go lay down and read both of them. steph

Hey I know what you mean about the sitting/standing factor. I sit for 12 hours a shift at my job. Sometimes I think it's going to kill me. I try to put my feet up on a stool, chair or the edge of a garbage can. I lean forward on the counter. I try to get up and walk around my area every now and then. Sometimes I have to just go lay down for 15 minutes or take my lunches sleeping. I know when my blood pressure drops with sitting. I can almost guess what my blood pressure is because of how dizzy and faint feeling I get. My eyes start to blur out and I get these horrible headaches. My muscles start to spasm in my back and neck. It's just a bad situation. With that said, I have found that when I'm hypovolemic and/or anemic it is much worse. So since my epogen injections have increased my fluid and blood count and they started me back on IV iron 2x's a month, I'm finally feeling better. Although a little under the weather today, hope I'm not getting the kids stomach flu. Vertical wheelchair - I thought that was the newer wheel chairs that lift into a standing position so people can be more functional in the kitchen and easier to grocery shop; just a few examples.

Just an update. I'm still working on this, a little slower than I would like. My son graduated from high school and the other kids had last day of school last friday with school functions nearly everyday. Then this weekend my 3 girls developed vomiting, diarrhea, cramps, fever, headache that when on for over 18 hours straight. Had to take one to the ER for IV fluids and pain meds. I'm praying that my boys and I don't come down with it. Anyway, there is my excuse and I will have this list out to you as soon as possible. Please everyone hang in there with me. thx steph

Great book! http://www.ndrf.org/Reference.htm

Everyone Thank you for being patient with me

Thank you Nina. I didn't know if you guys were ready to take off with such a huge project or I would have suggested that too. What do you think about the whole project and what the content should be? steph

I wonder if we could launch some education idea and get funding. It would have to be well put together and backed up with some credentials. I wonder which doctors might be willing to make educational material that we could distribute through out the country. Who wants to contact NDRF and see how we could get this idea supported and off the ground?