Mary

Hi Maggie, My symptoms started out of the blue on 7/02 when I was 43. My doctor believes it was due to a virus... but I don't remember being sick. The diagnosis came in 12/02. I was very incapacitated in the beginning but have been determined not to give in and let POTS take my life away. My doctor said if it was virus related it could possibly go away in 5 to 7 years, or at best my symptoms would level off and not get any worse. I recently turned 50 and have felt my body strengthening and my symptoms lessening as each season passes. Summer heat is the worst. I use cooling collars, try not to overdue and stay in AC whenever possible. Vitamins are the only medicines I take and I drink water all day. I have my ups and downs but the ups are greater in number. I have become very aware of my body and listen to it daily. I have learned not to allow frustration with POTS symptoms rule my life. I don't post much but every few months I come to the forum and read. I have gathered a lot of interesting ideas. It saddens me to know POTS patients are not taken seriously with our symptoms and decreased quality of life. Potsplace.com and this forum are both sites we can go to and know we are not alone. I got carried away answering your post. Don't know if this is what you were seeking out. Mary

Has anyone used massage therapy to help with their symptoms of POTS? or Has anyone found research to support massage therapy helping people with autonomic disorders? It seems like massage would be a benefit in normalizing the body. I have had hit and miss massages but not enough consistently to see a difference in my symptoms. Any information would be appreciated. thanks, Mary

Merrill, Thanks for your booster shot reply Any secrets to help me with quitting would be appreciated. POTS is hard enough and keeps me home except for when I have to work. Even then at times I have a hard time and need to go slow and always tank up. I know I will feel much better all the way around... especially my psyche. Michele, Thanks for your reply and well wishing. Nice to know I'm not alone here with this addictive habit. My doctor offered wellbutrin but I don't think it would work. I have tried the patch but smoked with it. My doc suggested local programs on smoking cessation. I have looked into the gum idea and will probably try that. Expense involved is not an issue since the habit has cost me plenty already. I believe our bodies response to quitting, due to us having POTS, will be a good one I don't think we'll be sent into a tail spin. I've heard that we will have a smokers cough bronchitis for awhile but that I could deal with. I have been sick since the day before Thanksgiving with sinus, upper respiratory yuck and bronchitis I think. I'm sure not getting over it sooner has to do with being a smoker. I figure improving our health by being kind to our body and not abusing it can only improve our symptoms all the way around. Let me know if you make any plan to quit. Jaime, Thank you for your understanding on this and also you noting the fact that smoking is an addiction and a disease I do believe you are correct with your comment on heroin. I have had my eyes opened, been educated about alcohol and drug addiction and have been involved with it in my personal and professional life for years. People untouched by any of these sometimes lack the education to help them to be understanding and supportive. Wanting to quit is just a beginning. Using the correct device and getting all the support we can is so important Please educate me about the homeopathic kit you mentioned. Any suggestions and tips are appreciated. Carrot sticks and knitting give me ideas about other diversions and are a good suggestions. What do you know about Zyban? I'd love to be each others support especially since we have POTS in common. I surely don't have the time or energy to join another site for support. Thanks to you all again Knowing people care and are supportive means so much, Mary

Life is full of stress for all of us. Healthy alternatives are available I know. My life has greatly improved over the last 3 years due to a much needed divorce, although I do believe the trauma of all that was involved, caused my POTS. My life now seems to be settling out and I am resolved to living with POTS and making the needed accomodations. Thanks in advance for any and all support you can offer. Mary

Hot showers are one of my simple pleasures in life. I can take hot showers in cooler weather but NOT in the summer months. Crazy I think. Why wouldn't my body react the same?? I have central air and keep my house temp close to outdoor temps all year long. In summer months I have to keep the shower curtain and bath door open slightly. This helps to keep my hr down and stop the overwhelming feeling of nausea. If I do get overheated, sitting or lying on the bed a half hour or so will usually bring my hr down. I know I could never tolerate a hot tub or sauna... as much as I love a hot tub

I went with a friend to the doctor last year. We share the same PCP. Well, it wasn't even an appointment for me but... the doctor wouldn't let me go without getting the last flu shot they had. She said I was to much at risk and needed it. That was the first flu shot of my life and it went well. No reaction and no flu. I haven't been able to get one this year so far. Such a shortage. Mary

Hi everyone, I usually visit the forum now and again. I read the posts and threads and feel the connection we all share. I myself am not as bad off as many others I read about here, but having POTS has definitely had an impact on my life. When saying my prayers, I ask to have POTS taken from me. I still don't know the cause of mine. Marriage breakup + near anorexia are my guess. My PCP seems to believe in time it could and may go away. I get so frustrated on a daily basis. Any exertion and I have to nap. I do work 36 hours a week and recoupe the rest of the time... just to be able to get back to work. I sometimes feel lazy but reassure myself that if I don't take care, then things will only get worse. I am so used to going, going, going and doing... I have a son and a daughter. They are great kids and understand the best they are able at their ages. I do the best for them and more when I am up to it. They are great helpers and understand when I have to say no. Before my diagnosis I could be active 24/7 and then some. Now my pleasure comes after my responsibilities and it never all gets done. Even driving, which I truly love is exhausting. I want to give credit to all the family and friends of the posters here, who are able to understand and stand by their loved ones. Believing in an unseen illness is unconditional love to me. I am fortunate to have my 2 beautiful children and a life partner who totally believes, understands and encourages me to take good care of myself. All I (we) can do is take one day at a time and keep on coming back here for the love and support this forum provides. After playing catch up with all the posts tonight, I didn't feel I had anything to add, so instead I wanted to share my feeling about this forum being a blessing. Take care and keep up the great posts. Mary

Nina, Sorry you had to go the hard road. Yes, your doctor should have known!! I have taken Allegra and it has done well for my. The doc that prescribed it did a good search for a med that wouldn't affect my heart rate. Next time ask the pharmacist about the med before you get it filled. They have the access and knowledge we sometimes need. This can be a double check after first talking with your doc. Good luck. Hope you are feeling better. Mary

Welcome to the board. You will find friendship and support galore as well as mega information on subjects. It's nice to have connection with others who are experiencing many of the same and similar things. Good luck, Mary

My symptoms are much worse the week before and the week of. My PCP increased my florinef by 1/2 dose starting the week before. This has definitely decreased my symptoms (headache, tachycardia, thigh cramps, sob) but has increased my feeling tired and of being fat due to fluid weight gain. After my menses are over and I go back to my normal dose of florinef, I feel semi human once again. Mary

Hi, You have all said everything here, so I just want to add a personal comment. I crash frequently. I know it's due to work and mom stuff. It can take days to recoupe and is depressing but I just need to go with the flow until I can get going again. For me, stressing over being down with POTS symptoms just makes it worse. My therapist is such a helping boost. Chronic illness is hard to adjust to but remembering if we do everything we can to take care of ourselves then we need to leave the rest to our higher power. I find filling those down times with inspiring reading makes me feel alot higher when I finally get up. Mary

Hi, I wake with a headache daily since diagnosis. I take 600mg motrin at am coffee time and it usually resolves within an hour. I think the diuresis with caffine also helps to relieve my headache. Good luck. Mary

Hi, I had a loop recorder for a month but it wasn't an implant. I have never heard of that. Mine was external and caught my heart rythm when I pushed a button. It recorded three times and then I had to call for a download. Thinking... since you experience syncope you would be unable to push the record button... ding! ding! on me. I would say the insertion is similar to a pacemaker and I have heard they are relatively painless. Good luck. Report back after the insertion. Mary

Hi, My understanding is POTS persons need fluid retention to maintain fluid volume and reduce symptoms... tachycardia, syncope, tiring, etc... I am much more swollen in the am. But soon pee off some of this after am coffee. That's why I think I feel soooo FAT all the time Mary

Hi, Welcome to the forum. Nice to hear about another nurse. 22 year career for me. Will continue work as long as God allows. Parking permit is a blessing. Mary

Hi Futurehope. Read your post and feel for you Question... Has your husband read any material on ANS disorders? Or on your specific ones that have been diagnosed? You have gotten plenty of replies for your trip to the wedding so I wanted to discuss your families knowledge and willingness to gather the information they need to understand your medical condition. Communication is the key ingredient of a relationship Common but sad... the person who has the problem is usually the most knowledgable. My suggestion to you is to ask your husband to read up on ANS disorders and especially yours, to help him understand and cope with your changed lifestyle. You cannot ignore yourself or your symptoms to please others just because they don't get it. Some ANS disorders can't be visualized and people have a hard time in believing what they can't see I think having your husband view the Dinet site is a great idea as well as visiting and reading on the POTS place site. Good luck. Mary

Hi Jaime, Sometimes working in the health field can bring benifits. I have been on both ends of the procedure. Nothing to cause you unnecessary worry. You will not be given general anesthesia.. to dangerous for such a quick and easy test. You will get conscious sedation with yes, probably versed and maybe morphine. Of course when I had mine I asked to watch and they had me set up in-front of the monitor. Next thing I knew I was in the next room waking from the drugs and going home soon after. Needless to say, I never saw a thing. While under light conscious sedation a person will follow commands to help the procedure along but won't feel pain due to morphine and won't remember anything due to the versed (a very nice drug of choice) Hope this helps. It will be over before you know it. Make sure to bring a designated driver. Good luck Mary p.s. let us know how it goes p.p.s. normally a sign is put up near the patient with an allergy such as latex

Hi Ernie, WOW !!!!!!!!!!!!!!!!!!! What a day you had. Can't believe they just didn't give the results then. So sorry girl, but you sadly failed again!! The staff was dearly concerned and rightly so. I would think they would have kept you overnight and tanked you up good. Thank the Lord I only needed one TTT cause I wouldn't want to do it again Thanks for letting me know how you did. I love to support when I can and get support when I need it. Take care, Mary

Ernie, How did your test go? Couldn't your new md's just get your records from the states?? Hope you were able to refuse if needed We all have rights but get scared especially when we feel intimidated. Remember even dr's are humans.. not all as nice or knowledgable as others but.. humans just the same. Let me know how your TTT went. Mary

Ernie, Thinking about this makes me uneasy but... You do have ortions. If it is the same doctor or facility that is doing the test, ask if you could stay overnight (they can give you IV saline solution). Make sure you are well rested, hydrated and have taken your meds. You are in control of what they plan on doing so try to stay calm. Lay down on your trips. If they won't admit you overnight think about a hotel room for the night before and after. I question another TTT if you have had one and are already diagnosed. What are they looking for? You have already demonstrated an inability to maintain an upright position. I have located a site that may be of interest to you... www.cpmcnet.columbia.edu/dept/syncope/tiltfaq.html. One last thing... always remember, you as a patient have the right to refuse treatments. Talk your concerns over with your. Good luck. Please kept us updated. Mary Try site here... had trouble posting... sorry TTT info

Unless I'm incorrect... there is a phone number to call with all medic alert tags so a medical facility can find out information on the patient. Does anyone know for sure?? The information you give to get the tag... doctor, medical condition, allergies, etc. is kept for people who need it. Mary I do think P.O.T.S. would be a good inscription. Many doctors have heard of it but may not be as knowledgable as the specialists. My doctor knew of and about it before I went to her... and she is an internist. Thanks

Does anyone think persons with ANS disorders need to have medic alert braclets or necklaces?? I have POTS and work in an ER seeing multitudes of medical and trauma patients. I get scared thinking I may end up somewhere unresponsive and need to let medical persons know I have POTS... since it would factor into my treatment. Any comments?? Mary

Great idea Please keep us updated... Mary

I went to my primary doctor with a heart rate of 120 or so sitting. She did orthostatic vital signs and noted the gross difference in numbers. My respiratory rate was also up due to my heart rate. I felt so bad I had to lay down during the history taking. I shared my symptoms and she sent me to a cardiologist. From him I had a 24 hour halter monitor, a month long loop monitor, an echo and the definitive tilt table test that I miserably failed I was so exhausted after the tilt test. I was on florinef prior to and during the tilt test and still failed. It took about 6 months for a definitive diagnosis of POTS. Good luck. Mary

I have not had great success with florinef so I stopped taking it. ... who knows my body better than me?? Mary