futurehope

If I remember correctly, there are no withdrawals to this med. I felt great (better than prior to taking it) after I stopped. I wish that great feeling (from stopping) would have lasted?! I can't start and then stop meds in order to feel great. I don't have any suggestions about what to do for finding a new psychiatrist. I remember my family doctor calmly telling me to "keep taking the Remeron" after I complained of side effects. I'm sorry I listened. I remained on it for 5 months and felt great after I stopped.

Mary, If I had to choose what to do in your situation, I'd prefer a doctor with more training. To me, a uro-gynecologist would have more info about causes and treatments for your condition. That's my opinion only and I'm not a doctor.

Hi! I've been a member since October 2003. I still have POTS, but I am more successful at living with it than when the symptoms first appeared. I had to modify my lifestyle in order to improve my life. I also joined this forum to learn as much as possible to help myself. For me, a big part of learning to live with POTS had to do with, decreasing the anxiety that came along with not knowing what was going on with me, and having no idea what to do about it. As time went on, I did each of the following to help myself: 1 - joined DINET and became an active participant - I learned much 2 - decreased my fulltime work to part time, and then to disability retirement 3 - exercised my abdominal muscles, leg muscles in moderation 4 - walked (as exercise) in moderation. (The amount I am able to tolerate fluctuates.) 5 - ingested small amounts of caffeine (in the form of chocolate) as a stimulant to my ANS (though not every day) 6 - drank water frequently, and used salt on food often 7 - tried many medications over the years like florinef, klonopin, cortef and found my best bet is no medication 8 - slept inclined (but have slept this way before POTS) 9 - managed my activity level so as not to overdo (if possible), i.e. "on one day", "off the next" 10 - limited my carbohydrate intake and amount of food ingested at one time so as not to stress my system 11 - took several supplements (I chose my supplements over time as I acquired knowledge.) I also take several prescriptions to manage my allergies, my GERD, my thyroid and my interstitial cystitis. I will tell people about myself only if it is asked, or if it is necessary. Other than that, I do not discuss myself (except on this forum, of course). I am fully aware that each day is a gift, and that I am not the only one with a daily invisible struggle. Other people have their own burdens, like cancer, heart disease, mental illness, family situations, financial stresses, you name it, some of which cannot be seen either. I accept what is, but as time goes on I learn more and more about what helps me. To "accept what is" does not preclude "seeking more information". I also try to help others who are in a different stage of learning to cope than I am.

Persephone, I so agree. If I have to compete over a television----turn it off!

I do not suffer from misophonia, but I do not like certain sounds. For me, I do not like loudness. It actually hurts me. I also do not like repetitive, jingle-type music, or overall agitated, noisy, loud repetitive beating drums or rhythms. It's like my nervous system cannot tolerate it. Frequently, in the past, when I went to a movie theater, I would have to stuff my ears with paper to tolerate the loudness of all the speakers. I do not like concerts where the artist equates volume with talent. I basically love peace and quiet. I immensely dislike the constant blare of a television set, with its loud, jingles and repetitive brainwashing commercials. I disliked walking in the stores this morning to go shopping because the blare of Christmas music did not sound good to me. I felt like I couldn't wait to get out of there and I did not buy anything in the store that annoyed me. If a song uses repetition of phrasing as its primary construct (somewhat like the repetition you hear in "hey jude"-na na na na, na na na na hey jude,..... you get the picture).....I can't stand it. I don't know if I'm sound sensitive in general, but I do avoid agitating my nervous system when possible, and I seem to have my own preferences. P.S. FWIW, all my sound "issues" arrived after the age of 38 yo. Prior to this, I would say that my tolerances to sound were average.

Lissy, Have they cultured your urine and found bacteria growing in it? I'm asking because I have a medical condition called interstitial cystitis, and the symptoms mimic an infection, but I do not have a positive urine culture. Has a urine culture & sensitivity test been done? In it, the antibiotics that the bugs are sensitive to is mentioned. For future reference, have a running list of medicines and the effects they've had on you. Write the date, the dosing schedule, what you took it for, and the prescribing physician. You'll have this handy for future reference. Hopefully, you do not even have a bacterial infection in your bladder. Maybe, the BV makes it feel that way. Let us know what you decide.

Persephone, I'm so happy for you. As one fellow traveler to another (I went to the UK this past summer), I found the overnight to the UK much worse than the return. For one thing, I lost 5 hours, for another, I didn't sleep well on the plane. But coming back to the US was easy in comparison. I gained 5 hours. It's amazing what it does for your outlook on everything when you push the boundaries. You feel less of a victim, and more of a fighter. Congratulations!

Oh yes, I remember I gained weight rapidly, and told my doctor that I was going to become depressed from this drug because I was turning into a blimp. I stopped taking it. My POTS went downhill from there. I believe that it somehow worsened my then relatively mild POTS symptoms.

I hope you are not the driver for 1 hour, but the passenger? I would never drive for that long. But, I have to agree with Jan. After having this condition since at least 2002, I've adapted. The more I "try" to do, the more I do. I've learned that it's okay not to feel perfect, even if I'm away from home. I've learned how long I can be vertical before problems set in, not to eat too much at one sitting, to add salt to everything, to forego the desserts at someone else's house so I don't get palpitations, to rent a scooter at an amusement park, to use a seat cane, etc. You learn to cope and to expand your life despite this ailment. Once in a while it's good to forget your limitations and to take a risk. I remember very well feeling like you in the beginning. I was scared and severely anxious much of the time because I didn't understand what was going on with me. But, I can tell you, after all these years, I can handle many more things without totally flipping out. If you have a loving fiance to accompany you somewhere, great. You will still live your life within your "new normal" capabilities. We're here if you need to ask any questions.

Hopefully, you'll now know what to take to help your body work better. I'm so glad you found something that explains your problems. What, in particular, made you go through the trouble of contacting Dr. Shoffner to do mito testing? What convinced you this might hold an answer for you? TIA

Remeron absolutely made my POTS worse (and I've never recovered). I needed to use a cane because the medicine made me so dizzy. Ugh....don't ask me about this...I have nothing good to say. I used it for 4 months total, the biggest mistake I've ever made. (I trusted my doctor. Never again.)

My body malfunctions in all positions. If I am lying down, I can feel dead like I have no energy, and no pulse pressure. I am like this every morning. Sitting can make me symptomatic and standing can evoke symptoms. Any stressor probably stimulates secretion of stress hormones, and I suppose I react to that as well. Even if this syndrome is called postural "othostatic" tachycardia, that does not mean that symptoms are present ONLY when standing. Like I said, I malfunction in any position. My body no longer works normally. Sorry, if I cannot give you a better explanation. Once I figure this all out, I'll let you know.....

Tammy, Have you had the function of your adrenal glands checked via a cosyntropin stimulation test? Your adrenals may need support and this may be why your POTS symptoms appeared at the same time as the color in your skin?

This is how I view "sharing" of my personal medical problems......... There are many people we are in contact with that have medical issues. Do they discuss them? Obviously, when someone asks, you explain in an easy-to-understand manner. If someone does not ask, and there is no need whatsoever for me to bring up the issue, I don't. When I was working (in the past) at one of my non-government jobs, I said as little as possible, ever. I did not want to be "RIFFED" (reduction in force). At my government job, I waited a long time and had a good reputation before I divulged my health issues. Obviously, I had to tell them I when became incapable of working. But, in general, unless something is obvious such as a broken leg or a wheelchair, people tend not to divulge their personal stuff unless they are asked. I've said this before........I, myself, prefer to "forget" my medical issues and to "take a break" from thinking about me, me, me......and the last thing I want is for someone to solicitously (with pity in their voice), be asking me "how are you?", when I'd rather talk about something else. I am not trying to convince everyone on here to follow what I have chosen, especially if they are in a wheelchair and they need assistance. My opinions are for me only and for my medical condition at this time. I will not be quiet if it puts me in danger or if I might have an incident.

I've slept on a wedge for years. Obviously, at this point, your body is finding that position "too vertical". Maybe a more gradual approach to elevation would do, like 2" higher/week. Somebody on this forum tried this gradual approach, and had success. It took months for that person to be able to sleep higher. I don't remember how they accomplished this. Maybe it was with blocks under the head of the bed? I can't remember.

I haven't read all the posts, but I wanted to chime in that in some cases, such as anemia, POTS can be a symptom, not the primary disease. Years before I was sick enough to pursue a diagnosis, I had "temporary" POTS symptoms because I was peri-menopausal and anemic. The POTS symptoms abated back then when the other conditions improved. My opinion is that all possible causes of POTS symptoms should be pursued first , before just assuming POTS as a stand-alone illness.

Sue1234, I spoke to one representative who was not overly knowledgable. She mentioned a lab about 23 miles from me, not a name that I ever heard of. I can't remember it. Then she said they could(?) also draw blood at a hospital center she named about 20 miles from me. Honestly, I couldn't understand why the hospital would accommodate them? Apparently, they assign you a time to show up? You're fasting. And it's 6 -7 vials or more of blood drawn depending on the tests you picked. Yikes! I asked for the scientific proof for the claims they make and for the values they consider "normal". This lady knew nothing. My take on it: A nurse founded this "method" because???? I did not get to speak with her or her representative. My opinion: If you have exhausted all possibilities for finding a medical reason for your condition, and you feel like spending the $400 for somebody to give you a report, go ahead. Frankly, I don't trust this kind of stuff where a nurse figures out what "normal" is, gets some labs to do something and prints a report. I would have to know a lot more before I believe this stuff. The premise of what nutrients a body needs sound plausible, but how they determine what is "normal" for you sounds a bit shady to me. Maybe somebody on here knows more?

I've emailed customer service, and left a message with the company to find out where their "collection centers" are and if they assign you a specific time to show up? I've been extensively tested in the past by "alternative doctors" and have been assigned supplements that exacerbated my existing stomach problems. I cannot take any B vitamins unless the supplement is dessicated liver. I cannot take any minerals without my stomach/esophagus lining becoming inflammed. So, other than altering food intake, I doubt I can take any supplements.

I watched the documentary last night. Were we told WHERE or WHAT LAB tests for nutritional deficiencies? Does anyone on here know? TIA

I second what Sue1234 said. Let us know what you decide.

As best as I can, I usually try and pace myself. That means that if I have an "outing" today, I will not voluntarily have one tomorrow. Of course, sometimes "life happens", and I wind up crashing later.

Very interesting. Maybe somebody will discover why our ANS malfunctions.

On the bright side, things are looking up. I was visiting my endocrinologist at Hopkins. She sent in her young assistant physician to do the "intake" interview. I beat around the bush when explaining to him about me. I said things like, "Have you heard of orthostatic intolerance?" "Do you know of Dr. Pete Rowe at this hospital who works with pediatric patients?" Finally, I just said, "I have POTS. Do you know what that is?" He did. I said, "How do you know about it?" He said, "I learned about it in medical school." It doesn't take much to "make my day", and that young physician did. Also, the oral surgeon who just did my dental implant knew about POTS. He frequently gets POTS patients sent to him who need their wisdom teeth removed. So, as time goes by (and I have been diagnosed since 2002), I can see "the word" is getting out. I suspect that may have an impact on dismissive family members:they will not be able to pretend POTS is psychosomatic, or they will look foolish.

We can have a double "whammy"....we're sick....people don't believe it. EarthMother, To your mother, the wheelchair was a constant physical reminder of something she is trying to suppress, and that is your illness. It was easier for her to ignore you and your wheelchair, than admit something is wrong. Truthfully, when an ailment is ongoing and does not lead to recovery or death, people have no idea how to deal with it. They don't know what to say. They know something will always be wrong with you, so they don't even know whether to ask, "How are you?", since they know you are not well. It's actually easier to ignore the entire thing. Frankly, since I'm not in a wheelchair, I will never bring up my "problem" unless it's medically necessary or I'm in need of assistance (like at an airport). I view myself as being similar to someone with Rheumatoid arthritis, or Crohn's disease, or something that doesn't get better. It's part of who I am, but sometimes, even I like to forget about it and pretend I'm healthy. I'm sorry for how your mother has chosen to deal with your infirmity. I'm guessing she is not a nurse, right? Nurses are used to seeing illness, infirmities, people who need assistance, and they are generally more understanding of health issues. The rest of the population (those who are not nurses), usually don't have a clue as to how to respond. You have been blessed to have friends that are not threatened and can relate to you on a more realistic level. Your infirmity has put you in a position of understanding others in a similar plight. God bless!

Ditto to Sue1234. I just had a visit to my endocrinologist yesterday, and the questions they asked me to determine possible adrenal insufficiency were nausea, vomiting, stomach ache, loss of weight when I complained about morning narrow pulse pressure. Is your son's blood pressure low when this is happening? I hope you get help for your son quickly. Maybe, it's just a stomach bug? But I personally would be interested in the blood pressure in the AM?