mountain girl

Yes, me too! I was looking forward to spring, but here in va it's like we went straight to summer temps and I also feel the symptoms worsening just being out and waiting for the car to cool down. I think I read taht pots pts are not able to adjust to changing temps as well and that is why many of us can't take the cold either. I do get cold, but can take it much better than heat. Someone else wrote they could even feel it with a shower. I have to be careful to keep the water lukewarm and I used to love to take a hot bath, but no more!

I had a similar experience in that my h and h was low norm range, but ferritin level I finally learned was 7. I still feel fatiqued easily and do not feel "normal" but feel being on the Iron supplement has helped. Last bloodwork showed I was up to 28, so I would think for your daughter it would be worth trying. Doctors must vary in their opinion on this, but I was told by my pots dr he does not like ferritin to be less than 40.

I don't think I feel guilty necessarily, but still frustrated-YES. I always said I was not really a social person, because before pots, I worked alot of hours and when I wasn't working there was always things I needed to do just to run a household. I never even knew how to use a computer before pots partly because I couldn't sit still long enough. Now that I am not working near as much and not able to be on the go doing something all the time, I almost feel bored. I feel somewhat "bad" that I don't feel like doing anything much. I am motivated to go to work because we do count on my income, and have already had to learn to live on less. I gave up my full time position two years ago, and part time people are not guarenteed any certain amount of hours, so during the week when my husband is at work the days sometimes get long. I like what someone said about the "new normal". I do try to stay positive and am glad I am able to be upright longer than many with pots. It was also nice to read that many of you do as I do and tell people we are fine or doing better, even if we aren't. Mostly I look fine, so people assume one should be better. For me I have to look back at almost a whole year and say the second year of having pots was not as bad as the first. If I look from week to week or month to month the progress is soooo slow I don't always see any.

I will tell you what I know about ferritin level. My cbc and hemoglobin and hematacrat were on the low end of normal, so I do not know exactly how it works, but I think the ferritin is the iron stores in the body,you might google it to see, but I was to several doctors and I thought had a ferritin level drawn before, but was just told all my bloodwork was "normal". The doctor who finally treated me with iron for the low level said he does not like to see the level below 40, even though the lab normal range is I think 10-?, I cannot remember the top/high number of norm. Anyhow, if I had not changed doctors I may have never been treated with iron, and it has made a difference in how I feel. If I remember right you said you were seeing someone at the Mayo Clinic, so you would think they would know, but do some research on your own if you can before your next appt. and bring it up again. My cardiologist made the recomendation of iron, but had my primary care physician tell me what dose to take and how often. I take Ferrous Sulfate 325mg three times a day.

I do not know exactly how much salt/sodium I take in, but I find Gatorade helps me the most. I used to drink about 64ounces a day, but tried to reduce it some because of the calories and did not like the low cal version. Now I can get by on about 32 ounces a day and supplement my fluid intake with water or herbal tea. I also drink some coffee and find that the caffine does not bother me as long as I space it out and drink maybe 1-3 cups a day. When I tried to go to just water and try salting my foods, and found I was too dizzy, chugged a gatorade, and felt better within an hour or so. My bp never goes too high and stays low to norm, so it seems I do not get "too much" sodium. When I was in the hospital for a pots tachycardia attack, they were not very familiar eveidently with the importance of sodium for pots and had me on a heart healthy low sodium diet, so I had my family bring in my gatorade. Play around with your sodium intake, and fluids and you will probably find what feels right for you.

I also use to worry if my pots would get worse. From what I read, I know that is possible, but I have had pots now abou 2 years, and have very slowly gotten some better, but mine was not as severe as some others in that somehow I managed to keep my job and work, but had to go to part time. As you said, everyone is different, and it is hard not knowing. The first year I felt really bad most all the time, this second year, I have more good days. I keep a journal, and write down what I did that day and how I have felt. It is helpful because if I get discouraged I can look back and see that I have been able to do more than I used to. Someone else mentioned it seems cyclic and I would agree. I had been feeling alot better, then for no apparent reason, I had two weeks where I felt bad again. One of the most important thing that helped me was finding a dr who was experienced with pots and gave me hope.

I did not have to have the iron injections because I was able to tolerate the iron tablets, but my Ferritin level was very low too at 7. I will tell you that I do feel better after 4 months on the iron my ferritin level is up to 28. So while I cannot give you experience with the injections, I think you will feel better if you can correct the anemia. From seeing that you live in PA I wonder if you have the same dr I do. Dr. Goodkin. I have been very pleased with him and his experience with pots. Good luck.

Can relate to every thing you are experiencing with your neck. My pots developed after several years of dealing with the neck pain and feeling a knot on the left side of my neck which I think is a disc that slides out of place due to muscle knots and tightness. My cardio dr thinks the neck problem is probably responsible for the development of pots. I get cranial manipulation therapy 1-2 times a month to try and get things aligned the way they should be, and while I am not "cured" I do feel I can stay upright longer and have less tachycardia. The doc that does the cranial manipulation thinks I may have to come in for "tune ups" indefinitely because things do not stay where he puts them, they keep having a tendency to slip back. I wish a doctor could have known how to help my neck problem before it brought the pots on. As you may or may not know, the cranial nerves go down thru your neck, and if they get pressed on they affect the autonaumic nervous system, which controls our heart rate and many other things. I am really interested in staying in touch with you since your pots and neck problems so much resemble mine.

I am glad your daughter has you to advocate for her. I first saw a local cardio who at least could diagnose me, but did not have many pts with pots so not much experience, then I asked for a referral to a larger hospital center where they treat more pots pts. After several visits, I decided to look for a dr who really understands pots pts and wants to help us. I travel from Va. to Pa. which is about a six hour trip to see a dr but he has been worth it. My point is, if you and your daughter do not feel this dr is experienced in pots, keep looking for someone who is. This website (dinet) has a dr list and that helped me. I am much older than your daughter and have had pots 2 years, but have slowly improved. At first, I rarely felt normal, then I would notice sometimes I would feel normal for a short time out of the day, usually in the morning when I felt most rested. Sometimes I would have a few "good" days, and think I was "cured", but was not. Now I "know" just to try and enjoy the "good" hours or days. I am still on meds. and do not always feel "normal" but better. I think 10 days is enough to know if a med is helping. For me I knew in a few days, or sometimes the first day if it made me feel worse. As you have probably read, teens tend to have a very good chance for recovery, so hang in there. Your daughter is the best judge as to what she can tolerate. I kept trying to exercise, but found that short walks in my neighborhood or around the mall was all I could do. If I did too much I felt "hungover" the next day. Hopefully you and your daughter can learn as you go what she can tolerate. Good luck to you both.

I am on Florinef but would like to try to go off at some point. I have been on it for two years, and do feel it has helped me. I am also on a beta blocker, so I asked the dr about going off that first, by reducing dose, then stopping. Not sure how it is going to work out, but hope for the best of course, that my heart rate will stay down now that I am doing some better. Are you seeing someone familiar with POTS, because drinking the Gatorade while on the Florinef and having bloodwork to check sodium and potassium levels every three months is how my dr has monitored me.

I try to shower every day, but there are days where I just wash up at the sink if I am feeling too tired. Thank goodness after two years with pots, I usually feel good enough to shower every day. For me showers were easier than bathes, and make the water not too warm. The other key for me was try not to stay in too long, the warm water and humidity in the bathroom can make one feel worse.

It was interesting to read what flavors everyone likes and what brands. I like the grape gatorade, they call it firece on the bottle. It is the dark purplish blue one. I also drink the fruit2o brand of flavored waters. I believe it is sweetened with splenda. I try to alternate a bottle of gatorade then a bottle of the water. I did not like the low calorie G2 gatorade. Dasani water also has flavored water and I like the grape. Sometimes I get tired of drinking the Gatorade, especially because of the calories, but other than the flavored waters, which are not carbonated by the way, just light flavored spring water, I do not like "diet" drinks. I drink regular sweet tea if I am out somewhere and want something different.

Idid not realize how active I really was until this happened to me and I feel so "inactive". For me, I have found I am very limited in tolerating exercise other than just walking, and walking too fast brings on some of the symptoms you describe. My doctor says to listen to my body and suggested that walking was the most strenuous exercise I should do right now. I do some stationary exercises like situps, pushups, leg lifts, even though I can't always do very many, I do what I can depending on the day. I did not notice your age, but from what I read, younger people have a better chance of a full recovery, so I will hope that for you.

Chest tightness as you describe it is probably similar to what I describe in myself as chest heaviness and discomfort, and I also feel sometimes like I cannot get enough air. Sometimes it passes for me if I lay down, sometimes I end up taking an Ativan. I think for me it is the POTS causing the symptoms, and while Ativan is used for anxiety, I wonder if it helps relax something(including me) and helps relieve the chest heaviness. I had not noticed a connection between "that time of the month" and symptoms being worse at first, but after paying more attention, I definitely have more symptoms and feel worse the week before. Wish I could tell you something else to help, because I know how uncomfortable and frustrating it feels.

Thanks for sharing the article. I too found it very interesting. My tilt table was read negative by the first dr for same reason, no change much in bp, but I pushed for another dr to look at it based on the almost doubling of my heart rate, that along with my symptoms confirmed positive TT. I did not notice it of course in myself, but my family noticed how forgetful I was in the beginning. It has improved thank goodness. It was great that POTS made the news, and the Washington Post at that! Also encouraging for that family that so many teens recover.

Yes, you guessed it, my dr is Goodkin. I have been doing the cranial manipulation almost 4 months, and it is very slow and while I do not see big improvement, I do think I am some better and my family thinks I am some better which for me is good feedback, because they live with me and I think sometimes when I feel bad, I forget that I ever have good days. I keep a journal too, just a few lines about my day, what I've done and how I have felt, which I think helps me track everything. I wish I was more familiar with this website to know how to e mail someone when it seems our cases our similar, but I have not figured that out yet. I am going to give the cranial 6 months to a year, which is what Dr. Goodkin suggested. Thanks for your feedback about being on meds versus not and everything else.

I will definitely talk to my doctor before going off of any meds, but I wonder if anyone has ever found they felt just as good without the pots meds. I have been going for cranial manipulation therapy for about four months and do feel it is helping. I have been taking a beta blocker for about a year and a half, along with Florinef. The beta blocker made my bp go so low I could not tolerate it so was put on the Florinef 3 days after the beta blocker and did feel better then. i have been on Midodrine but did not feel it helped me and did not like the way it made me feel. Recently started Ritalin, but it makes me feel more chest heaviness and terrible headache. I am trying it again for the third time because I think it may help with the fatique, but I am not sure it is worth it due to the other side effects. When I say I am trying it again, I mean I tried it for two days, got a terrible headache and stopped it. A week or so later I started it again and felt I had more chest heaviness. The dr ordered 5mg 3times a day, but knowing how I react to meds I started with 2.5mg twice a day, and still had the side effects. My dr tells me because I had only had the pots for about a year before I started seeing him and having the cranial manipulation, he thinks I may be "well" in 6months to a year. He thinks the cause of my pots is biomechanical because of neck pain, and if the cranial manipulation can get things back how they need to be, that it may be possible not to need the meds. He says meds are a bandaid for the pots problem, and therefore if the cause can be determined, the better I guess the patient can be treated. I know the cause can not always be determined. I took the Ritalin 2.5 mg this morning, and so far no side effects, but it did not occur the last time til the second day with taking it twice a day instead of once. Did anyone else find their body "got used to" the med the longer on it? Plus all the side effects I read about it are scarey!

I am sure it is a challenge to deal with the fatique and young children. I think alot of people with pots have been type A personality or a person to push ourselves alot, but with this I am finding there is a fine line between pushing yourself, and resting and unfortunately it is not the same everyday in that some days I need more rest than others. It made me feel better to read from one of the others that responded to your topic that she feels better if she spends about 15 hours in bed, because on the days I work that is about all I can do so I often end up coming home at 3pm, resting in bed, getting up an hour or so later to shower, heat up something easy for supper around 5 then back to bed. I watch tv and don't go to sleep til 8 or so, but just laying down helps. On days my husband is home on the weekends, if I have to work, I try to rest then go out to dinner if he wants to do something. With toddlers, I would try to pick the time of day you feel best to do activities with them, and even if they are not nappers, I always had my children to have quiet time in the afternoon for an hour or so depending on their age where they could look at books if they did not nap. I did nothave a pots diagnosis when my children were small, but I remember feeling tired alot, so I had a childproof family room and their toys were kept there in a section so if I wanted to lounge on the couch, I could, but I could be right there with them. I never could sleep during the day and still can't but I do believe in going to bed early.

When I asked my cardiologist his thoughts on how much I should push myself for exercise, he said only you know how you feel and basically listen to my body. I have tried different times to exercise consistently, because previous doctors I had had kept saying it would help me feel better. I found this article interesting and the responses to it because I had started out on an eliptical machine and started out slow going from 1 to 3 minutes a day, increasing each day by a little until I could last 15 to 20 minutes. I was faithful for about a month doing it but felt no better at all, so stopped. Then I have tried brisk walking for 20 mins a day several times a week, but found it did increase my muscle pain. I think I feel best not exercising, but being as active as I can tolerate. For example I park in the back parking area at work, so I have about a block to walk to the entrance. I often take the steps at work rather than the elevator. When the weather is better, I walk our dog down our road and back at least two times a day.

I worked day shift over the weekend, and on Saturday, felt pretty good, so my husband and I went to the grocery store. Sunday when I got off, rested for an hour or so, took a shower, then we had planned to go to the movies for Valentines but they were sold out so we came home and rested in bed together flipping back and forth between the olympics and the nascar race. Monday I went to a movie with my daughter, did an errand and fixed supper, which I am often too tired to do, but ended up crying and feeling exhausted by 630. I find that happens sometimes if I have pushed myself doing too much. I used to not be able to do anything at all if I had worked, and on a day off, if I did one errand, that was usually it. Now I am able to do more than I used to, so I hope that time will come for those of you who are still having a difficult time. While I am not "cured" by any means, I am better than when this all started almost two years ago.

I have never had it explained to me why, but I do experience chest heaviness is how I would describe it. I often feel short of breath then too. I experience it as some of the others have said, when I have been upright too long and need to lay down, or even mild stress. For me, laying down does not help immediately, but does help when I have rested maybe an hour or more. I also have Ativan, which does help. Good luck and try not to worry.

I found I could only tolerate 0.1mg of the Florinef, more than that made my chest discomfort worse. It seems some doctors are hesitant to order Ativan, but I take it as needed for the chest discomfort and heaviness and that has been the best thing I have found to help it. Laying down helps sometimes, but I think being up too long or depending on the type of work we do, things we do can bring it home. I keep a small journal to track each day, how I am feeling and what I have done to see if there are patterns of things that make me feel better or worse.

I also see Dr. Goodkin. I do not live in Pa so he helped me find someone qualified to do the cranial manipulation close to home. While it has not been the "magic cure" I would like, I do feel it has given me improvement. I have been going for about three months and would describe it as a gentle massage like technique. I felt I have had more good days and fewer bad days since starting this therapy. I really feel like I am "anti-med" even though I do take them, so that is another reason I really like this therapy because it seems more natural and does not have the side effects like meds. I must admit though that I did feel worse after the first treatment for a day or two and Dr. Goodkin had warned me that could happen, so you may feel extra tired after.

My insurance would not pay for ritalin because it is not fda approved for pots. I paid fo it out of pocket just to be able to try it. If another website says it is fda approved for pots my insurance doesn't know about it. I was thinking the only drug approved by fda for pots was maybe florinef, or was it no drugs approved.

I just started Ritalin yesterday. The dr wanted me to start with 5mg 3times a day, but I decided to go slower. I cut the pill in half and took 2.5mg once yesterday, and twice today. I did notice some jittery feeling yesterday, but not really today. Today after the second dose I got a headache which has lasted at least 2 hours. I am going to try it a bit longer, but so far I am not impressed. If you decide to try it for your son, maybe start on a weekend when he is home, and start low dose.