mountain girl

I found this topic something I could definitely relate to. Since I was 45 when I acquired pots, I thought my weight gain was just middle age catching up with me. I eat healthy, and very little. I even tried eating more and focusing on increasing my protein intake, but that did not help either. I have gained about 15 pounds since my diagnosis. It is very frustrating. I have been on the florinef for about 9 years. I do not know how I would function off the florinef, since it did make me feel some better. Midodrine did nothing for me when I tried it. As for exercise, I keep trying, but it is SO difficult not to overdo and have a major setback. Just got a rowing machine, and starting off slow at 2 minutes a day. Having to skip today as I feel too worn out. Might have to back off the time. Just doing gentle yoga before that. But, prior to pots, I was active and never had to worry about weight gain. I just have to wonder if the pots itself affects our metabolism since it affects most everything else. Glad to see it is not just me. Thank you everyone for sharing:)

I think I remember your screen name, firewatcher. I was here about 9 years ago, soon after I developed pots. I am like many of you, developed pots at 45, have not gone through menopause yet and I am 54! Have only missed a cycle twice in the last year. I kept working, hoping I would get better and seeing all kinds of doctors to get as much help as I could. Not able to work now, but maintained for a number of years. My current PCP has been very knowledgeable as his daughter has pots, but he is retiring this month, so not sure how his replacement will be. My daughter has been having pots like symptoms and is scheduled for tests (TTT after a heart echo). The doctor did the "poor mans TTT " in his office and felt TTT was indicated. She is 34. I have tried exercise in the past, but it always made me worse. My husband just purchased a rowing machine, so I have been on for 2 minutes the past 3 days on the easiest setting. I know I need to build up very slowly. While I like to have a doctor who is at least knowledgeable about pots, I don't expect a lot, as I feel there is only so much they can do with the limited information from research if that makes sense. In other words, there does not seem to be great strides in research providing effective treatment or cure.

Looks like everyone has different ideas for how to stay positive. My husband helped me become more positive by calling my life the "new normal" for me. I cannot do all the things I want to do or used to do, so I have had to find new things that bring me joy. Have you ever watched the Ellen show? Comes on abc at 4pm EST. She often has things on that make me laugh, and comes on each week day. Also, our cable company has a music channel called soundscapes, and plays relaxation type music, and shows pretty scenary along with positive uplifting quotes. Sometimes I find a quote I like and write it down, and put it on the kitchen window, or someplace I will see it everyday. I also listen to talk radio while I am resting, WMRA. I feel it is a way I can learn new things. My husband and I share something each evening from our day, so I can tell him something funny I saw on the Ellen show, or something that was being discussed on the radio or news. I looked up yoga that can be done in bed, and do a few of those stretching exercises everyday. I think being able to do something (little as it may seem) makes me feel better! I still go through spells of feeling down, and I think that is normal when dealing with a chronic illness. Maybe your significant other could find some joy in bringing you happiness on those days, like finding some music on the computer he knows you like, or just giving you a hug and asking what can he do? I have to say I am blessed by having a husband that does these things, and just lets me cry if I need to. I think it has helped me to have fewer down days. My own mother does not understand the illness, and that has been difficult, but I am learning not to dwell on that. It is better to light a candle, than curse the darkness. By Eleanor Roosevelt (that is one of the quotes I like, that can be applied to life:)

I am very sensitive to meds, but the florinef helped me with no side effects. I am on the 0.1 mg as well. I still had symptoms, but even a little better was something for me. I wonder if your heart rate is elevated when you are short of breath and having the chest pain? Those were common symptoms for me in the beginning too. Finding the right doctor is possible, don't give up, it just takes time.

I too have had constipation issues for years, and was diagnosed with redundant colon as a result of the chronic constipation. I use Calm Magnesium powder, which is available at health food stores or on vita cost. My daughter is the one who recommended it, and when I saw one of the POTS doctors, she said the magnesium powder regularly was good since it is more natural than the stimulant laxatives. I think the key is to know you need to take something everyday for regular bowel movements, and you can increase or back off on the amount of powder as you need to. I personally take a heaping teaspoon every morning and at bedtime. It does not taste the best, but is not too bad with cold water, or juice if you prefer.

I have had pots/cfs for 9 years. I used to try to explain to people who knew me and would ask. I have been trying all this time to help my mom understand, but she still does not get it. She and my sister are always looking for a way to "cure" me. Right now, it is with exercise suggestions. I do try to walk in and out of the grocery store, or take a stroll around the neighborhood on good days, and depending on heat and humidity. I plan to print off some information for mom. I am thinking of just telling people I have a heart condition. Any suggestions?

I felt like the first one to three years were the worst. I have days where I feel really bad, but I have learned more how to deal with the condition.

Thank you both for responding. I felt sure I was not the only one who had a problem like this with being sensitive to different generics. My pharmacist has been good about getting the brand of generics I needed for these two drugs until the one was on back order, which no one has any control over I guess except the company that makes it.

Florinef 0.1 mg was added for me when the doctor put me on a beta blocker to lower my heart rate. My bps had always been on the low side, so when I started the beta blocker, it was so low I could not sit or stand for any time much at all. Within a day or so the Florinef was added and I felt better, not cured, but better. It has never made my blood pressure high, just counteracted the Bystolic so to speak so that it lowers my heart rate with out lowering my blood pressure too much. I feel okay with 100/60 where as before the florinef it was 90/50 and lower.

I was wondering if there are others out there on this site that have experienced a difference when your pharmacy changed generic brands. I have been taking Remeron (antidepressant) and Buspar ( anti anxiety) meds for about 15 years. I first noticed a problem when I changed to mail order Buspar, and I felt like I had been hit by a truck. Could hardly get up for work each day. After 2 weeks, I made the connection to having been on the mail order version, and switched back to my pharmacy brand. Within a few weeks I felt back to myself. Since I had a 90 day supply of the mail order, I later tried it again,(before throwing them away), and the same thing occurred. The same type of thing happened when my pharmacy changed generic companies for Remoron. I bought the brand name this month, which was expensive! Pharmacy is trying to get the Mylan brand I was used to, but it is on back order. My doctor asked if it was "all in my head". Funny it doesn't happen with any of the other meds I am on. I have read some of the other topics on Florinef. I take 0.1mg every morning, along with a beta blocker, Bystolic. My doctor wants me to take a half of Florinef each day to see if I can do on less. I did it the week before the appointment, waiting to see the doctor for the refill, and did not notice a big difference, but thought more chest heaviness than usual. He sent the refill electronically, and we had bad weather, so I did not have any of the med for two full days. I felt terrible. I took a whole pill today and yesterday, but he still wants me to try half. I am scared to tell you the truth. I am trying to get an appointment with my cardiologist to get his opinion. I had not been seeing a specialist(so to speak) since I had been stable on my meds. Any experiences anyone would like to share would be appreciated. I have been diagnosed with POTS and CFS for 6 years.

We chose to move closer to my work so I would not have a long commute, 10 minutes versus 30 minutes one way. Since working in itself was so difficult, even reducing the commute time made a big difference. I could get straight home and rest. The move was more difficult for my husband as we had just built the house 5 years before I got sick. I never really look back. I am so glad we made the change, and it is a shorter commute time for my husband as well. We were able to find everything on one floor, our bedroom, kitchen, laundry and living room, with the extra bedrooms upstairs. The only thing we questioned ourselves on at times was should we have stayed with something less expensive in case I could not work. I was okay with that, but it was hard for my spouse to have "less" so I kept plugging away, and now after 5 and 1/2 years since my diagnosis, I am "better". Not cured, but better. It has come gradually, a little each year. Good luck to you with your decision.

I was started on Bystolic, which is a beta blocker soon after being diagnosed almost 6 years ago. I was unable to tolerare Metoprolol as it made my blood pressure go to low and I felt terrible. Felt similar on the Bystolic, so Florinef was added within a day or two to help raise my blood pressure, and it has helped me. My current doctor wants to half my Florinef from 0.1 mg daily to half of that, and I am afraid of what may happen. I don't trust that he knows much about POTS. I stopped seeing a cardiologist after I seemed stable on the meds. I have been on the half dose of Florinef for about a week, and now none for two days as he has not phoned my refill in! I also find Ativan helpful in reducing the chest heaviness that sometimes goes along with pots, as well as helping with other general symptoms of not feeling good with pots.

At my doctors appt today, my PCP, my heart rate was 103 in his office. It has not been well controlled by my med for the last few weeks. He thought about changing my beta blocker to Atenolol, which I currently take Bystolic, but I was hesotant to try a different med. He then mentioned cardiomyapathy, which I had read some people on the dinet site have talked about in the past. I googled it on the computer and got some information, but does anyone here with POTS also have this cardiomyapathy? It sounds like prevention is the key, and that the overworking of the heart when it is experiencing frequent tachycardia damages the heart or causes some type of heart failure. Am I understanding this correctly? Any input someone has would be appreciated. I go back to the dr in 3 months, so I can always ask more about it then.

I have not noticed a dry scalp, but when I wash my hair it seems alot of it is at the drain when I am finished.

I take Bystolic 2.5-5mg and play with it based on my HR. I had been on 5mg, but tried going down to 2.5 mg and was able to maintain there for a year or more, now for no real reason HR up and had to go back up to 5mg. I also take Florinef 0.1 mg every day. I have tried taking half that, and also taking two tabs. but felt best on the one tab. You are so right, it is a guessing game,even my dr has said so and let me try different combinations till I found what I thought was best. I really wanted to go off the meds and try that, but felt worse after only a few days, and when I tried to reduce the beta blocker to less than 2.5 mg, I found out it really was helping keep HR down because it went up pretty quickly. I agree, trying to stick with the same meds is probably safest as far as side effects. You could try upping the Florinef to 0.1 and watch your blood pressure. I think the Florinef really helps me, although some times when feeling bad I have to wonder if any meds are really helping. Good Luck!

I have had more tachycardia the past few weeks, but I am still on my same meds. My cardio who is knowledgable of pots said to increase my beta blocker since I was on a low dose, which I did, but I have not noticed much difference yet. I read that some of you are affected by cold weather, but had not noticed that much as much as hot weather.I have had pots,(and FM andCFS) for about the past 3 years, and try to keep working, so sometimes I wonder if my body is trying to tell me it is too much. Any ideas? Also, has anyone heard of Hunter Hopkins center in Charlotte, North Carolina? They focus on FM and CFS, but are familiar with pots as well. I just wondered if anyone had any experience with them. Thanks for any input.

I too work in nursing. I was an LPN supervisor at an assisted living where I still work, but now as a medication aide, so my responsibility is less, less stress and less money. I developed syptoms in June 2008, when I had decided to go from evening shift to night shift. I now work only day shifts and that seems to work best for me. I just worked about 8 weeks for the day shift suprvisor who was off for surgery. It gave me increased self confidence to see that I could do it, but I did have a tachycardia spell that was worse than usual after a busy day at work and it seems my hr has stayed up the last two weeks, so I wondered if that was my body's way of saying I was doing too much. Believe it or not, I think the combination of mental multi tasking and responsibility made some parts of the supervisor job more difficult than the med aide job. Yesterday I was back in the med aide job and did not feel as tired at the end of the day, although maybe I was just having a good day. When I was diagnosed, it was by a cardiologist whose nurse suggested it to him after testing. I did feel some drs I saw treated me with more respect because of being a nurse, but my pcp at the time and the er drs I saw in the beginning made me feel like there was nothing wrong with me but anxiety, which hurts. Yes anxiety goes along with pots, but it is more than just anxiety. Even though I make it through the day at work, it is difficult, and I feel like it takes me time to recover after working, like I am hungover tired I call it, but I am afraid to go through what it takes to get disability, I have heard that is very stressfulin itself, so for now I push myself to work, and trying to just do part time.

I too have the unequal pupils, left pupil stays dilated and is slugish to react when they test it with the light for reaction. It is called adies pupil. It is very sensitive to light, and tires easily and actually causes me discomfort behind the eye. It seems the drs have not been able to do anything about it for me. Another word i found for it is Anisocoria, and is thought to be autonaumic phenomenon, occuring infrequently. More common is difficulty following a moving object with eyes, and the light sensitivity issue as well as blurred vision. While some of my other symptoms have improved slighty over the past 2 years, the eye issue has not improved much. It has been very discouraging. Blessings to you!

I recently went to a clinic that specializes in FM/CFS and is familiar with pots as well. The dr there recomended a certain type of chiroprator procedure to help with possible cervical instability and neck pain due to FM. I had x rays at the chiroprators office, and he put me in a retrator type machine to "gently" stretch the neck. Within a minute or less, I was experiencing tachycardia, nausea, and trembling all over. They stopped the machine, and did some manual manipulation of my neck, and some eye type of exercises, due to having addies pupil. He found that certain images, following a piece of red striped material with my eyes caused my HR to go up, so he said that was too much stimulation, and just had me follow his finger back and forth. He has some special training in Neurolgy also, and felt he could help me. My insurance does not cover this, so I am sceptical, partly because of the expense, and also because he wants to do more testing, and indicated he did metabolic testing and treatment. I would like to believe this could help, but I also wonder where does one finally draw the line with spending money to "get better". Notice I said better, and not well or cured, because i am not convinced a "cure" is possible. Any experiences you all have would be appreciated. The type of treatment recomended was the Blair technique, or NUCCA technique.

My husband, who is wonderful by the way, remind me to focus on what I can do, and that's a good reminder for me, but like you all there are things I miss. Just little things, like singing, cleaning my house, just feeling normal would do. I am fortunate that I have periods where I feel normal, but they don't last long, some times a few hours, sometimes a day. I still work, but on a limited basis, and I do not enjoy it as much as I used to because I just do not feel well, so it is so hard to get thru the day. I feel old before my time.

Like you I have had some good days, and thought maybe I was "cured". It is so disappointing when it comes back and one finds it was just a few good days. I have been strugling with pots for 2 years now and am so sick of it as well!

I take Bystolic, and it does come in 2.5 mg tabs, but when my dr increased me to 5 mg and I found that was too much, I break the 5 mg in half and take half of 5 mg tab a day. It keeps my hr down with out lowering my bp too much, but on the 5 mg my bp went too low. I also take Florinef which is supposed to keep my bp from going too low. The first beta blocker I was tried on was metoprolol and my bp went so low I could hardly get out of bed. I was hesitant to try bystolic, and did not feel good on first pill, but when florinef was added I could tolerate it. Now when I have tried going off Bystolic, not sure if it was really helping me feel better I felt worse off of it and hr went up much too easily. Consider trying 2.5 mg or 2.5 mg every other day. I did the every other day thing with the 5 mg before I knew it was ok to cut the pill in half.

Sorry about your bad day. I also am a nurse, but in an assisted living setting. I did step down from a supervisor position to working as what we call medication aide, so my primary job is to give meds and help with patient care. I have never worked in a hospital setting other than nursing school, but I hve done some home health. While each of us is different with our pots, I would say I pushed myself to keep working, but over the course of the last two years, I find it works best if I stick to one shift, and for me it is day shift. Even when I tried to do a reduced evening shift this weekend from 2 to 8 I was much more exhausted. My hr used to go up more like yours, but not since I am on the beta blocker. There are times where it goes up for no apparent reason, and like you, sometimes I feel ok and sometimes when hr goes up I feel really bad. As for trips to the er, in the beginning, I had 3 trips to the er in the first year, 2 before being diagnosed. The third time they did admit me, I believe it was because of the pots dx and they wanted to adjust my meds.Now, I don't feel there is really much they can do for me at the er. It is very scary to have the high heart rates and feel like I may pass out, but I have learned it will usually pass, and this second year has been better than the first year having pots. Like you I also considered trying to get disability, but decided the stress of that may be just as bad as trying to work.I would say as long as your job is willing to work with you and let you do some half shifts, keep trying. Some people just don't understand this whole pots stuff, and it is complex. The other ideas you had about trying to get a lower stress job were good ideas, but for most of us, any new job is stressful in itself. Have you ever done private duty home health? The good thing about some of the cases is you only work with the one patient, and have less standing than alot of nursing positions. I get depressed too about the whole work issue, and wanting to be able to do more, so I think that is a normal feeling. Do you have a dr you feel understands and is helping you? The interesting thing for me is I have been tried on different meds, but the best combo is what I was put on very early on in the pots dx. We kept trying for something better, but found the Bystolic and Florinef was the best I could do. Keep advocating for yourself!

I also am very happy for you and hope it lasts, but enjoy every moment you can. I have had maybe a day here and there where I feel"normal" but haven't been lucky enough to have weeks at a time, yet anyway. Sometimes when I am not on the website it is because I am not having good days, so I am so glad for you it was the opposite and you were having too much fun with your 5 year old. Blessings to you!

I also am skeptical of this doctors advice. When I chose a doctor, it was after finding someone who treats pots patients regularly and understands it. I went through some who had heard of it, but had to really research to find someone who I felt had expertise in it, and there truthfully are not many out there it seems. My doctor said when I asked him about exercise, that walking was the best exercise he could recomend for me right now. I have tried to exercise regularly and made it for about a month each time, but found that it did not really make me feel any better, and really just zapped my energy. I now opt for shorter walks, instead of going out everyday on a 30 minute walk or more, and I also let my body be the judge. I like others here have mentioned was very active before pots. I never became bed riden with it, and did push myself to be upright every day, and was lucky enough not to have the passing out problms very often. I tried going off my meds with my drs approval, simply him saying you can try to decrease the dose, but I do not know what will happen. I tried cutting the dose in half, and my heart rate was up after 24 to 48 hrs each time, I tried it three different times because I so much wanted to see if I could get along on less, or no beta blocker or Florinef, but I felt worse, so now I know. You don't say how your dr in the states managed your care and if you thought he was knowledgable or not about the condition, but I would take that into consideration as well.