dawn

Happy Birthday and May God Bless You Real Good. Dawn

The link is posted under the dysautonomia discussion forum. Dawn

Well, I listened to the show and was chatting online. She asked me to call in and I took up most of the show. Sounded like a hick from Wisconsin with all the Yup's and Ya's. Did get a chance to inform everyone about DINET. Dawn

I have been taking Klonopin 1 mg at bedtime for about 8 years. I take .5 of xanax 3 times during the day, that has been for about 13 years. I know I am addicted. I cannot function without it, so stopped worrying about being addicted along time ago. I plan to take it forever. Dawn

Hi, The past couple of days I have checked my BP many times daily. It is hard to say how long this has been going on. I have always had low BP. Orthostatic BP stayed the same or dropped a bit. When I wake up before getting up, my BP, is my normal, 90/62 P.88. When I get up and walk down the stairs while standing BP elevates to 154/104 P.93. Loaded the dishwasher and it rose to 174/112 P.103 standing. Laid down on couch and within five minutes BP 106/60 P. 63. I do take Inderal 10 mg 4x daily. I have been on low doses of long acting Toprol in the past, also lopressor but fainted frequently. I know that I am labile, but this seems ridiculous. I called my neurologist yesterday (he is on vacation and I only see him yearly). The on call neurologist said to go to urgent care. From past experience that is a waste of time as no one knows what POTS is. I currently do not have an internist, I had the same one for 16 years and was really blessed. I am establishing with someone new the end of the month, he doesn't know about POTS but would like to learn. Does anyone have experience with this? My concern is can I keep going when it is so elevated, is there any risk of stroke? I know my carotid arteries are clesr. I hate to lay down constantly to keep my BP normal as I will decondition so fast. Thanks in advance. Dawn

Nausea used to be one of my main symptoms. For some unknown reason my nausea is gone since I started Celexa?????????? I don't get it, I have been on 4 other SSRI's and still had nausea. I used to take protonix and that did nothing. Dawn

Just a thought: You can get a spasm in your coronary arteries. It feels like a heart attack. Dawn

The total process took me over 3 years. I was denied the first 2 times. It went to the hearing level but fortunately the judge read my medical file and approved it. I did not have a hearing. I had a lawyer and also my internist and my neurologist wrote a letter to the judge. The letters really helped. I also worked for a school district. Do you have long term disability insurance? It was very hard for me to quit working as I really loved my job, so I understand what you are going through. Dawn

HI, I am also overweight. Mine is due to SSRI"S. It puts on an automatic 30# when I take them. Stop and I am my ideal weight but anxious to the point of panic. No one has mentioned my weight but they do stress lower leg strengthening. I know how important that is to help with the pooling in our legs. I usualliy address the weight issue myself first thing. I eat between 800 and 1000 calories a day. I have no appetite. I literally make myself eat. Don't let it bother you. I did join weight watchers about 5 years ago for a year and lost about 10#. My friends had great success, me, it was like 1/2# loss every week. Don't get discouraged if the weight comes off slowly. Wish you the best. Dawn

Hi Kaye, This is a frustrating syndrome. I worked as an LPN for almost 30 years. I am now 52. I think I had POTS my whole life. I could just tolerate the tachycardia when I was young. I was always a fainter. I am now on social security disability after a 3 year wait. Feel free to email me if you want. God Bless, Dawn

Have you been checked for Addisons Disease. Where they do the cortisol injection and then draw blood several times? I think that is what I had done. It has been so many years ago. But, I felt like that. Dawn

Hi, I have had TMJ for 25 years. The pad slipped away. If I chew gum, I am in trouble. As for the migraines, a baby aspirin a day took care of that problem. Ask your doctor if you could try that maybe. It is miserable. I have also had bouts of neck pain after an injury 26 years ago. I know how painful that is, do you have a soft neck collar that you can wear to limit your movement? Did they give you a mouth piece to wear? As far as husbands, men, they are all the same. LOL God Bless, Dawn

I'm a big zofran fan. Works great. Especially the kind that disolves under your tongue. Dawn

Zach, It is good that your BP does not drop. It means that you are compensating when you stand. Our autonomic system is affected, it often just goes awry, I have had several TTT, the first one my BP went really low as I stood to the point that I fainted. The second and third one I had I was hypertensive when I stood BP 180/120 range. You need to remember our systems are very labile. You learn that everything is unpredictable. Because your BP rose the day you were checked does not mean that it always does. If you have hypovolemia (low blood volume) as many of us do, when you are upright you may not get enough blood to your brain and stomach causing your dizziness and nausea. Before you stand do some leg musle squeezing and get up slowly. Sometimes my heart races for no reason at all no matter what I do. Then I feel weak, dizzy and nauseated. I lay down and elevate my legs for 45 minutes or so and then I feel better. Make sure you are drinking enough fluids and eating salt. You search for triggers and sometimes there just aren't any. You learn to just ride the wave. That will come in time. Welcome to the group. Dawn

Welcome!!!!!!!!!!!!!!!!! Home becomes our safety zone. The more we stay home in our routine the more we want to. I would never leave the house if I or one of my family members didn't make me. We are in Wisconsin, the summers get hot and humid. I always carry a cold spray bottle and spray myself constanly as I don't sweat. I also get episodes, I have had to lay down in department stores on the floor. I just ask for a chair to put my feet up on. I also recline in the car and put my feet on the dash or even on the ceiling when I lay in the back seat. You have to crank up your sense of humor with this condition. I have even fainted and woke up on the checkout belt standing in the grocery line. A low dose of an SSRI, I take Celexa has helped me the most. I went through episodes of fear and depression. My family just got sick of listening. So I decided I am going to give anything a try if I tip over, I tip over. I don't mean to minimize as I have had a few ambulance rides but we can't live in fear. Dawn

I lay with my legs elevated above heart level for 45 minutes at least twice daily. Lots of leg squeezes before I get up in the morning. I also tense my leg and butt muscles whenever I am standing. I tried several betablockers. Inderal (propranolol) 10 mg was my solution. I take it 3-4 times a day. It only takes about a half hour to start working and doesn't lower my blood pressure. Dawn

Like Morgan said have your Primary Doctor on board. I would also suggest a lawyer. The Shaw Group which is nationwide was great with mine. Dawn

Morgan, When I did biofeedback last year I only breathe 3-4 times a minute when I am relaxed. I don't get it. She told me I had to breathe faster but then i get lightheaded. I have a pulse-ox and I am usually 98-99 during the day. 91-94 when I wake up during the night. Before my colonoscopy I was 100% and I am a smoker I smoked when I was a teenager and quit when I had children. I always liked it and said I was going to start when I went to a nursing home. I consider this "close enough." Dawn

Morgan, I dug out my sleep study (from a 2 foot high stack of medical records). I had it done in 2002. Total recording time 4 hours ,54 minutes with a low sleep efficiency index of 70% and abnormal architectrure with low amounts of REM. Sleep was mildly fragmented with six awakenings of at least one minute. There were 86 obstructive apneas and hypopneas, yielding a repiratory disturbance index of 25 and apnea index of 0.9. There were no O2 desaturations less than 90% and the longest apnea was 41 seconds. Mild snoring was noted (patioent did not sleep supine). No EKG changed accompanied the apneas. There were no periodic limb movements in sleep. This study is inicative of a moderately severe obstructive sleep apnea syndrome. Stage 1- 19 minutes 9.2% Stage 2- 146.5 minutes 70.9% Stage 3- 9 minutes 4.4% REM 18 minutes 8.7% They gave me a bipap, then a cpap. I never could use it, I tried and tried. Woke up with it on the floor everymorning. It also gave me sinus infections. I think it would help if I could get used to it. Dawn

I recently went on a road trip with my grown son to Myrtle Beach. We had to escape this Wisconsin winter. :(Today we are under a winter storm warning, we are getting 10 inches of snow). Anyway, I loved it there. We are considering moving there. Just curious if anyone lives there and how hot the summers really get. Dawn

Mine are healthy and grow like crazy. Color is pink underneath the nail. Dawn

I bought a pretty gold plated one online. It is small with a little medical alert charm on it. The front has my full name, dysautonomia (POTS) The back says beta blockers, my hospital name. Dawn

Nina, Sounds familiar. My doctor finally said "enough." "You need all the energy that you have to be able to care for yourself." I hope this is temporary. I used to go on Florinef but it didn't do much except deplete my urinary sodium. Take care of yourself, it is really important. Dawn

What a nice love story. Wish you all the best. Dawn

Oh Morgan- Social Security is a joke. I finally got approved in September after 3 years. I finally got my backpay check yesterday. I told my husband, if something happened to me before the check the came he should keep me alive on a ventilator until it was deposited. I feel for your son. My physician of 15+ years basically fired me face to face. I was really hurt. He said it was time I find another physician. He was "burnt out" dealing with this illness. I said "you think you are burnt out" then it was bunch of blah, blah about he is having problems with his teenager, dealing with clinic politics etc. WHATEVER. I made an appointment with a woman doctor who is clueless, she doesn't want to prescribe my meds. All she cared about was doing a breast exam and a pelvic which I wasn't due for. Then said you really should see a surgeon and have your bladder "tied up." Never listened to my heart, listened to one lung. It was a physical!!!!!!!!!!!!!!!!!!!!!!! The hoops we have to go through for social security is ridiculous and I suspect it is going to get worse with our economy. Good doctors are hard to find. The process of looking for one is expensive. I wish I knew what to say. Let me assure you the selection of physicians in Wisconsin is no better than Washington. Dawn