Michelle Sawicki

There are also some programs out there that you may qualify for. Have you checked out: http://www.helpingpatients.org/ I don't know if proamatine is available through them, but it's worth a try. I second what Roy said about doctors cutting their fees. I met some remarkable doctors when I was without insurance. One time I had a small benign tumor in my arm that was continuing to grow and had to be taken out. I saved some money -probably not nearly enough- and went to see a surgeon. When he found out I didn't have insurance he waived the appointment fee and took the tumor out for $50....probably much less than what he should have charged for just the supplies & his time alone. And he never charged me for any follow up appointments either. I will never forget how good that Dr. was to me. Hopefully you too can find some great physicians like Roy and I have found. They are out there. Best wishes, Michelle

Hi Jessica, Sorry to hear about your dilemma! I went years without health insurance when I was younger....and I had a young son. It was scary! Is there any possibility the Dr. you are seeing now would give you a price break since you will be working for him? Just a thought... some doctors do it. Also, are there any "clinics for the uninsured" where you live? You might want to check with your local Health Dept. There is both a free medical and dental clinic in the city that I work in. Not that they will know what to do for POTS, but they may be able to help for lesser, more common ailments. I wish you the best, Michelle

Thanks so much, Nina! I'm off to check out that link.... Michelle

Hey guys! Have any of you had success with online pharmacies? I'm looking to save money on prescriptions. I'm fairly close to Canada, but am hoping I can find something online that will save me money before resorting to a trip across the border. Let me know if you guys have had success with online pharmacies...and if you've saved money. Best, Michelle

Your daughter sounds like a gracious young lady who can be an inspiration to us all. I'm glad to hear the article helped and that your daughter has seen some improvement in her condition. Hopefully she will continue to see better days ahead. Michelle

That's great Dan! Hopefully you'll learn more about the etiology of your illness. Best wishes, Michelle

Hi Angie, I came across this publication today and thought it might interest you. It's in Spanish, but you can translate it by going to an online translator and typing (or pasting) in the web address and then clicking translate from Spanish to English. Online translators aren't the best, but hopefully you'll be able to get the gist of the article. Hope this helps, Michelle

I get the waist high, 30-40 ones. I just buy mine over the Internet at Bright life Direct. There are some other companies out there that I think people have posted on here in the past. Anyone? Best of luck with them! Michelle

Compression stockings make a big difference for me. After I put them on my heart rate goes down and my blood pressure goes up...and that's just what I need. I wear them when I go to work or church or any other place I may be stuck standing in one place for any length of time. They definitely are worth trying. Michelle

My temp is usually lower than normal too. Michelle

Hi Elaine, I'm really not that great of a cook, so I'll spare you the recipes. If we want to eat good my husband does the cooking. But I eat pretty much what a normal person eats. I just buy a lot of what I eat at health food stores....I usually go to Whole Foods in Ann Arbor, Michigan. http://www.wholefoods.com/ It is pricey...and it's the only grocery store I've ever been to that actually has valet parking, but I really like the food. As I mentioned before, I stay away from sugary sweets and foods with a lot of junk in them. Other than that, I eat like a normal person. And I do eat out a few times a week, during which times I probably am eating foods with a lot of additives/preservatives in them. I'm not totally strict with my eating habits, but I always do stay away from sugar. I know if I don't I will really feel lousy. Keep trying! Once you've been doing it for awhile it just becomes normal. Michelle

I'll continue to keep him (and you) in my prayers. Michelle

Might this be neuropathy? Have you talked to your doctor about this? Michelle

Dear off the wagon, I know it is hard to give anything up at first, but once you've done it for awhile it becomes easy. I don't even think of eating sweets anymore. My husband and son try to talk me into things every once in awhile...just a couple of weeks ago my husband talked me into taking a bite of a doughnut at a cider mill. It tasted so overwhelmingly sweet that I ended up spitting it out. Probably not so good for business at the cider mill. I don't even like the taste of really sweet things anymore. There are naturally sweet foods (fruits and such) that you can substitute with when you get a craving for sweets. And, while I don't eat them, there are sugar substitutes that you might like. Hang in there and -if sugar does indeed make you feel worse- keep trying. Once you've done it for awhile it becomes easy. Michelle

Tim, I'm so sorry to hear about your father. I will keep you both in my prayers. Michelle

It really doesn't sound to me like your daughter "passed" the tilt. A blood pressure of 160/103 and a pulse of 180 are NOT normal. Not everyone with dysautonomia faints during the tilt. Did the doctor really tell you she passed? Michelle

My heart rate gets much higher when I eat sugar and I get very fatigued feeling. I've had glucose tolerance tests and they came out fine. I know that I feel better without sugar so I no longer eat it, though other patients have told me sugar doesn't seem to affect them one way or the other. If it didn't bother me I'm sure I'd still be eating it. Michelle

Hi Jessica! You might want to ask for the numbing shot without epinephrine. Sorry, I can't help with questions 2 or 3. Hopefully someone else can. Michelle

If you are able, seeing a specialist is sooo worth it. Otherwise you probably will feel frustrated. Here is an article from mayo that talks about POTS/ablations: Pacing Clin Electrophysiol. 2001 Feb;24(2):217-30. Related Articles, Links Is sinus node modification appropriate for inappropriate sinus tachycardia with features of postural orthostatic tachycardia syndrome? Shen WK, Low PA, Jahangir A, Munger TM, Friedman PA, Osborn MJ, Stanton MS, Packer DL, Rea RF, Hammill SC. Division of Cardiovascular Diseases and Internal Medicine, Mayo Clinic and Mayo Foundation, Rochester, Minnesota 55905, USA. Inappropriate sinus tachycardia and postural orthostatic tachycardia are ill-defined syndromes with overlapping features. Although sinus node modification has been reported to effectively slow the sinus rate, long-term clinical response has not been adequately assessed. Furthermore, whether patients with postural orthostatic tachycardia would benefit from sinus node modification is unknown. The study prospectively assessed the short- and long-term clinical outcomes of seven consecutive female patients with postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia who were treated with sinus node modification. The study was conducted in a tertiary care center. The electrophysiological and clinical responses were prospectively assessed as defined by autonomic function testing, including Valsalva maneuver, deep breathing, tilt table testing, and quantitative sudomotor axonal reflex testing. Among the study population (mean age was 41+/-6 years), 5 (71%) patients had successful sinus node modification. At baseline, heart rates were 101+/-12 beats/min before modification and 77+/-9 beats/min after modification (P = 0.001). With isoproterenol, heart rates were 136+/-9 and 105+/-12 beats/min (P = 0.002) before and after modification, respectively. The mean heart rate during 24-hour Holter monitoring was also significantly reduced: 96+/-9 and 72+/-6 beats/min (P = 0.005) before and after modification, respectively. Despite the significant reduction in heart rate, autonomic symptom score index (based on ten categories of clinical symptoms) was unchanged before (15.6+/-4.1) and after (14.6+/-3.6) sinus node modification (P = 0.38). Sinus rate can be effectively slowed by sinus node modification. Clinical symptoms are not significantly improved after sinus node modification in patients with inappropriate sinus tachycardia and postural orthostatic tachycardia. A primary subtle autonomic disregulation is frequently present in this population. Sinus node modification is not recommended in this patient population. PMID: 11270703 [PubMed - indexed for MEDLINE] I hope this helps! Michelle

Hi, I used to have this problem in the morning. I stopped it by waking up 2 hours before I actually had to get up and drinking a glass of water, eating a cracker and taking a beta blocker at that time. I would keep the water, cracker and bb on my nightstand so I never had to get out of bed. Then I would go back to sleep. When I'd wake up I'd feel good. I don't have to do this anymore...I feel pretty good now when I wake up and sometimes even forget to take my beta blocker. So hang in there...this too can improve. Michelle

BTW, Tim...drop me a line and let me know how your last doc appt. went. I've been wondering. Michelle

Nina, Nina, Nina....now you and I both know that the best support people have "been there, done that" and can truly relate to others. You are great, and we all need support sometimes....even Susie Sunshine. Dan, somehow I was under the impression that "the well known businessman" was helping with the payments. Sorry to here you have joined the "paying off the hospital for the rest of our lives" crowd. Maybe we should have just gone to Walmart instead? Hey, maybe Justin could post his address and we could all just move in with him. What do you say, Justin? Michelle

Nina, I am soooo sorry to hear about this. You are so kind and giving. I pay hundreds of dollars a month in hospital bills too, so I can relate. It stinks. Hugs to you, Michelle

Wow, Jessica. A POTS coordinator? What a dream job. I am totally envious of you ....and totally happy for you. Congratulations!!! Michelle

Hi guys! Lots of different things can cause this type of episode, including sugar problems, and you should see a doctor. Some people may experience a lot of anxiety and have symptoms such as these, but I personally don't think anxiety is the cause for everyone. I can walk up a couple of flights of stairs and induce these symptoms to a lesser degree. Our bodies pump out vasoconstricting catecholamines (the reason some of us have high norepi levels) to try to bring blood back to the upper body. It may make us experience symptoms similar to those of panic, but it is happening as a normal body response to not having enough blood in the heart and brain. These symptoms may be happening in other patients for other reasons. There are so many things the doctors have yet to figure out. Lisa, I've learned not to bend over shopping carts (or anything else) as well. Every time I bend over the sink to brush my teeth I can literally feel the blood filling up in my legs, and I can look down and watch my legs become more and more purple. They also become swollen looking. And if I stay in this position long enough I will start to get shaky. This position definitely increases the pooling of blood for me and I am hoping someone will do some research in this area soon. Michelle