thejohnsongang

Beth, I was dx with POTS by a cardiologist and my PCP says I have both pots and NMS. I've continued to get worse even with treatment. My pots symptoms are under control some of the time, but like you I have constant fatigue, flu like symptoms and chest pain/pressure daily. I was referred to an immunologist to look for other health issues. She is testing me for rheumatoid arthritis, Lupus, Lyme and Fibromyalgia. She believes I have Fibromyalgia. I will find out in 2 weeks. You might want to check for other health issues to see if you have another underlying illness that could be causing your symptoms as well. Good luck and hope you find relief.

CONGRATS!!!!! It's wonderful to be in weddings. I was in all of my friends and I've owned a lot of dresses I'll never wear again. But that was years ago, before I got sick. I only have 2 friends now...the one's who didn't bale out or think I was crazy when I got sick. The two I have left are the best and I wouldn't change them for anything in the world. The one's you know that will tell you something you need to hear weather you want to or not. I can imagine that you've had a pretty rough time of it since you've been sick so long. Enjoy this time at the wedding. You can help in so many ways even though you are in a wheelchair and might have symptoms. Sometimes it's the little things that mean the most to the bride. How about for after the reception you make the bird seed throws to hand out, or if using bubbles you can decorate them up nice and cute. How about buying votive cups, ivy and candles and make centerpieces for all the tables. Or you could make little thank you gifts from the bride and groom for each guest to take home. You could do little bags of mints or nuts. Or I've even seen a plastic spoon with a Hershey kiss taped to it with a little note saying thank you for sharing our special day attached with a ribbon. Or you could do a little message in a bottle theme with a little sand and a few shells and a note written in side. Lots of idea's out there to help you occupy your time, help with the nerves and help the bride at the same time. Good luck and please remember to post a picture for all of us if you can.

Sorry to hear that your having such a bad time with the pain. My daughter has POTS, EDS, migraines and Von Willebrand. I scheduled her an appointment with the pain management clinic to see what we can do for her pain. It was suggested by one of her doctors. ER's can be a joke if your in pain. They look to see if anything is broke or bruised and they give you Tylenol 3 and send you home. It just doesn't work for everyone, then when you end up back there the next day or 2-3 days later they think we are just a bunch of pill popping junkies looking for a fix. My mother went through a pain management clinic before her knee surgery and they helped her a lot. They made sure the pain was under control with out all the second guessing of her injury as she had medical documentation for it. Just a thought. Call your insurance carrier and see if they have a pain management clinic in network and if so, get a referral from your PCP. It can't hurt and it just might help. The local clinic here is great, but my daughter will be seeing hers at John Hopkins where all her doctors are. Good luck and let us know how things work out for you.

Hello all. I went to an immune specialist today to follow up with my constant fatigue and flu like symptoms at the urging of my PCP. Well she is running tests for RA and Lupus , but feels that it is truly fibromyalgia that is causing my problems along with the pots. Any one else have fibromyalgia? and if so what are your symptoms and how do you treat it. Just looking for info. Thanks,

Hey everyone, sorry I'm adding my two cents so late. Haven't been on in awhile and when I got on today and seen this post, I decided to take the time to chat for awhile. I am married to an older man...14 years older and our sex life was always great and very often until I got sick. We were just married for over 2 years when it all started to creep down hill on me. First I was just to tired and felt to bad, then as they added medications some of my desire and need returned. But when they added the florinef it all died out again. I've talked to my doctor about it and we( me, doctor and husband) decided that since my symptoms were improving some for me not to come off the florinef. My husband and I have tried many different things and the most important one for me is understanding. He "gets" and "understands" how I feel and he in no way wants to make me feel worse. My largest problem being dryness. With lots of trying and searching, we found a product to help with that that would not break me out or cause any infections. I purchase "SLICK FREE" from tasteful treasures. I have a lady that sells it at shows and stuff, but she lets me call her and buy it anytime I want. She keeps it in stock at her house because she knows I always call and want some. It has been the best thing for us. The other problem of being in the mood was I always felt I was letting him down by not being in the mood and my insecurities caused many problems until we worked it out. My fear was that if he wasn't getting it from me he would get it somewhere else. He assured me and it took months for me to realize that my wonderful husband wasn't like some of the other losers in my past and that he truly love me no matter what. True intimenticy(spelling??) is better than any sex I've ever had and it's a great feeling to not feel like I have to just for him. When I'm in the mood we do, when I'm not we find other ways to satisfy him. I learned not to stress the big "O" and enjoy our sex life better now. He has worked on his issues of his maleness telling him that if I don't achieve the "O" then he has not done his job. It is a very sensitive matter for almost everyone that has a chronic illness and it all takes A LOT of understanding. You and your partner have to work on it together and come to a meeting point where you both are happy. Your doctor can help in a lot of ways, but there are tons of other ways to feel sexy and satisfied with out actual intercourse or the big "O". Keep trying to find what works for you and remember it might not be what you want but what you can deal with instead.

Willows, Sorry it has taken me so long to respond. I have been on very rarely lately as my daughter has been very ill and my mother had to have surgery. Any way. The items you make are so beautiful and life like. I love the bird cage thing with the little fairies or elves or whatever they are on it. Have you thought about making and selling them. I know here in the United States, people would buy them up by the dozens. I'm glad you have such artistic talent for the rest of us to see. Nolie

Thanks for info you guys gave. I will check into them. As for Dr. Rowe, my daughter sees him and I sent him an e-mail to ask his opinions. He said pretty much the same thing about JHH and UMD. My insurance has provided me with a couple of names to research, so I start there and then check into the one's you all listed. I spent today at John Hopkins with my daughter who has pots. Dr. Rowe treats her and today we seen the Hematology clinic. Not good news. Anna has Von Willa brand. Could be worse, but definitely not good. She has a GI mobility study later this month with a TTT and now she has to have DDAVP before the procedure to prevent her from bleeding to much. A little scary. It's kinda like a mild form of hemophilia. Still learning about it. So, of course I'm trying to juggle her illness and mine at the same time and it gets hard sometimes. I will keep you posted as to what I find out about doctors. Thanks again. Nolie

I need to find a doctor at John Hopkins or at University of MD that can dx and treat CFS or Fibromyalgia in adults. I've tried looking on their websites, but haven't had much luck with this wishy washy brain of mine. If you see or have seen a doctor at either hospital that you would be willing to recommend to me, please drop me a private e-mail. I am in Frederick County in Maryland and looking for someone I can drive to and back in the same day if possible. Thanks. Also....how many people have had their problems start with a tick bite? I was bitten by a tick in 2002 and it was after that, that all of my health problems started. If just came out in conversation with my PCP today and he wants to look into it more. I had the blood work today for Lyme and will see what comes from that. He wants me to see a Rheumatoid arthritis specialist as well as someone who deals with CFS and Fibromyalgia. I know CFS falls under the same catagory as POTS, but my cardio does not treat CFS. Thanks for your help. Nolie

Proamatine or midodrine......the same...will cause the chills or goosebumps. As for your problem, until you can change your bodies reaction to the medication try putting band aids over your nipples to help with the sensitivity as well as with them showing. Small solution with out adding extra clothing in the heat. Hope this helps you out and good luck with the girls showing.

I just sent you a private message containing the address. Nolie

Thanks everybody. After reading all the post and doing some research I have decided that I am just going to talk to my PCP about getting some iv fluids while in her office on an as needed basis and see if it helps as much as it does in the ER. I am trying to keep my symptoms down as much as possible. Even though I always have a water bottle and salt shaker with me, I still have symptoms. But if for any reason i get IV fluids then i feel great for a couple of days with no symptoms at all. Worth a try that way and less risk. My PCP is great about trying things to see if they help. She has several other POTS patients and understands. Her physician's attending is a great guy and I love to see him more than her. He has pots and really understands. He just doesn't have symptoms like most of us do. Thanks for helping me make this decision. Nolie

One thing I did want to ask everyone is about IV fluids. I see that some people are on IV fluids at home and I am very curious. When I do end up in the ER or hospital I know that IV fluids make me feel wonderful and whole again for a day or two. No pots symptoms at all. I push fluids like crazy as well as salt load, but not the same. How did you end up on IV fluids at home? How hard is it to deal with? Do you have a central line or port? Who monitors your treatment at home? Who prescribed it? How much does it help? Will insurance pay for it? And anything else you can tell me about it. I am thinking of talking to my doctor about it and see if we can try it for a little while (maybe at the office or lab) and see if it helps. If it does then I will talk with her about doing it home. Any input anyone has to offer would be appreciated. Nolie

Thanks so much for your response. I have had a really hard time getting my thoughts around what has happened. This is the cardio that I have trusted since last year and the one who dx me with pots to begin with. I am seeing a different PCP tomorrow for a general check up and second opinion. I will talk with him about the pots and about cardio issues I have. I just want to get a general 2nd opinion even though I love my current PCP. I am still on a search for a new cardio that accepts my insurance. I can see from my research so far that I will have to learn to accommodate a couple of hour drive as all the specialist are far away. Thank god for reclining seats and AC. I can't even go out of the house when the temps are as high as they are without feeling so tired after only a couple of minutes. I have been in the house for 4 days straight so far with out even setting one foot out the door. Usually I try to at least go out in the yard with the dogs for a couple of minutes, but it has been in the 90's here and I just can handle it. Maxine...you hit the nail on the head about how hard we work to do things that are trivial to others. I know a flight of stairs is a workout that will put me on the couch with such bad tach for hours. I also know that shaving my legs is a no-no unless I'm in a tub and my husband is present. I also know that brushing my teeth is done sitting down and that I will never carry anything over 5lbs. Any exertion is horrible for my tach and bp. Even stretching to get a plate out of the cabinet is a no-no. I will get so dizzy and off balance and my heart rate goes sky high ( 105-130), and my vision gets all blurry. My kids and husband want to go to the beach next month and we are going to try it. We decided to get a room on the boardwalk so I can watch the kids from my AC room during the day and then we are going to rent a wheel chair or electric wheel chair for me to use after the sun goes down so I can enjoy the boardwalk and spend some time having fun with the kids. Hopefully this will work. If not then back into the ac I go. But the kids and hubby will get a much deserved vacation from things at home. I just hope my daughter can take the heat. Her Pots as been very up and down. But she said she was willing to suffer for a few days to enjoy the ocean and beach...she wants to work on her tan. We are going to go to the local beach (4 hrs away). Ocean City, so if anything happens we are still close to my doctors and my daughters doctors. Always better to be safe than sorry. I'm always afraid I'll end up in some hospital ER with doctors that have no clue what to due and they will make me worse. Any way. Thanks for listening.

Hello everyone....I sure have missed all of you and keeping up on all the posts. As some of you know my 16 year old daughter was dx in March with POTS. She has been having a horrible time and we have been working on getting her medications under control over the past couple of months. We went for her check up yesterday at JHH and she is doing ok. They added and changed some of her medications over the past couple of months and I think they have found what works for her. She is on midodrine 10mg every 4 hours, florinef .1mg daily, potassium 10meg daily, yasmin 28 daily, calcium supplements daily, periactin 8mg daily, claritin 10 mg daily, zantac 150 mg 2 x day. She has trouble with the heat, but otherwise her symptoms have been under control most of the time. But now thanks to the pots, her food allergies are back and she is being tested again as it is a new allergies we can't find. They also think she has EDS and are going to test her for it. I went to my cardio on the 1st and was very upset. I talked with him about my disability case and he said he would not back me on it as he is a pediatric doctor. Even though he is a POTS doctor and he sees and treats adults he is primary a pediatric cardio and would not be able to help me with my disabilty case. I was so mad..as he has know for almost a year about me filing for disability and he waited until now to say he wouldn't support me. No wonder I'm having trouble....I also talked to him about some of my symptoms and he blew most of them off. He did change my beta blocker to coreg 3 x day, but the hair I'm loosing he said could be because of the florinef, but wouldn't take me off of it. I talked to him about being so tired and sleepy all the time and his answer was to get a job or volunteer somewhere. He know my limitations and that I can't be up and around for more than an hour with out laying down. He also knows that the heat has taken it's toll on me and I have to live in the a/c. And that was his answer. He actually said I needed to stop being lazy and get up and get moving around. My husband almost blew his cork. I sure did. I trusted this man and his treatment to help me and now he has did a 180 on me and saying the complete opposite. Now I'm looking for another doctor in my area for my pots. I have lost all respect for him. So is anyone has any info on a good doctor in the central maryland area...please let me know. I did ask my daughter's cardio at JHH if there were any POTS doctors for adults at JHH and he said he did not know of any. So much for that. Anyway, looking forward to catching up on all the post and talking to everyone again. It sure has been hectic and I need it to slow down. Hope everyone has been ok while I've been gone. Nolie

I know we all get tired of playing the game with our doctors...but it's just that...they are not the one's suffering, we are. With that said, pick your self up and regroup. You know your body better than anyone else and we have to become LOUD some times to be heard, but we have to take our health into our own hands and push the issue some times. Get a couple of other options from other doctors. Take the results of your past tests with you and write everything down. In the end, hopefully the answer will be clear to you if not to them. Just remember we are all here to support you. Good luck.

Help everyone! I have been having a hard time with my teenage daughter. She just turned 16 over the weekend. She was DX with POTS in 3/07 and we have been trying to find the right medication mixture for her. She is slowly going down hill and her symptoms are getting worse. We are awaiting for her allergy testing at John Hopkins in June and waiting to get in to see the genetics clinic as well. They want to rule out EDS as she has hypermobility. Since getting the dx of pots her symptoms have gotten worse and at 16 she is having trouble walking up stairs/hills to the point of being out of breath and her HR is over 100 at times. We are working with a wonderful doctor at John Hopkins trying to find the right medication mixture for her. She is currently on Claritian for her allergies, yasmin for her PPMD and PCOS, periactin for her allergies, Zantac for her acid reflux, calcium with Vitiman D because of her milk allergy, thermo tabs for the pots and a high salt/water diet for the pots, mididrone for her blood pressure/pots and her doctor just added florinef and potassium to the mix. Does anyone have any ideas on how to help an active teen girl to deal with these issues of increased HR and the dizziness that comes with the low BP? She is going to Prom this weekend and not looking forward to it. We have made accommodation's for her at school, but for the past 2 weeks most days she can't attend or goes in late due to symptoms. She plays softball and has been unable to practice/play for the past 2 weeks as well. I think it might have to due with the heat, but not sure. I've talked with the doctor and he has added some new meds which I currently use as well so hopefully it will help her. I'm just at a loss on how to help her cope with this. Being a mom and dealing with it is completely different than an active 16 year old. I have been so busy with my own health and with both of my kids over the past month that I haven't even taken the time to get on the support site. My 11 year old son was dx with hypermobility this month as well and he will be seeing the genetics clinic as well. Busy month and a lot going on. I just thought I would post to see if anyone has any home remedies that might help for boosting her confidence or to help with some of her symptoms until we can get the meds to work right. We have tried lots of rest, tons of water, getting up and moving slowly, taking naps or resting when needed and lots of hugs and love. Dad and I are overwhelmed.... It really stinks when your kids are sick and you are unable to fix it for them or make them better. She is in an angry stage right now and is mad that this disorder has changed her life so much and taken away from her life what she enjoys the most...school functions and softball. Sorry for ranting and venting...just looking for some input and help. Nolie

Let me know how thing turn out for you. If I wouldn't get in trouble I'd just sent you a couple to try, but the law is pretty hard on that. I hope you can find something that works for you.

I did not keep the pamphlet out of my last midodrine refill, but I did call my pharmacist and found out the following for you. The maker is Sandoz and they are located in New Jersey, USA. The NDC# is 00185014901 If you ask your pharmacist to pull up this NDC number it will pull up the little blue pills that are generic, but work the same for me. Please try these and see if they help. If you can't get them where you live, maybe your mother can order them and send them to you. They do have a website, it is www.sandoz.com. I know they are located in Germany and the USA, but you'll have to go to the site and click on worldwide and click on map to find the closest one to you. Hope this helps.

Yes acne here as well. I'm 36 and had more acne than my 15 year old. I went to an Endocrinologist and she got me all figured out. I had elevated testertone levels and could not take birth control or estergon therapy due to a clotting disorder that I have, so she treated the elevated levels with diet. A high carb diet can cause severe acne as it raises your blood insulin levels which in turn raise your testertone levels. You might want to get it check out with an Endo just in case. PCOS (which I also have) can also cause acne for the same reasons above. She put me on The south beach diet. Its ok, but I can't follow it exactly due to the pots as well as personal preference in foods. But I try hard and it has helped. I lost 6 pounds the first month and have just maintained since then. Good luck and hope you find something that works for you.

I take midodrine as well and it has been a rough road for me to find which brands work for me and which one's don't. When I first started on it I got the generic from my local pharmacy and it made me sick to my stomach. I mean very sick. It was a white pill that would disolve in my mouth before I could end swallow it and it would stick like chalk in there for hours. I talked to my doctor and he told me to try the brand name. I was lucky as my insurance paid for the brand name and I was only charged the generic price for it. Brand name $735.00 Generic $430.00. I ended up only paying the $10 co-pay. The brand name was wonderful and the pill was tiny blue the size of a birth control pill. When my insurance changed the first of the year my new insurance company would only cover the generic. I worked with my pharmacy and they found a generic brand that is the same size and color of the brand name and we tried it. It works fine. He now orders only that brand in for me and my insurance still covers it as it is generic. If you want I can ask him where it came from so you can see if you can get it. My perscription bottle reads midodrine 10mg tab EONL. Don't know if this will help you or not.

I sure know how you feel. I have a huge problem with cleaners of any kind. I have a thing about germs and don't feel that it's not clean enough unless it is bleached. I guess I got this from my mother who is the same way. I still use clorox sprays and toilet cleaner, I just get my hubby or kids to do it for me as they see what it does to me. I have trouble breathing and my throat get all scratchy and sore and I'm tired for hours after smelling it. I try to help clean when I can and I use the clorox wipes in the fresh sent...it doesn't bother me at all. No Pinesol that is the one cleaner I can not stand. I can go somewhere to a store or friends house and if they have used it at all then I can tell the minute I walk in the door and I have to leave. I can't breath with that stuff. I would try to talk to your job about the effects it is having on your health. Maybe they would be willing to change brands. I wouldn't just quit my job..I would love to be able to work again, I get bored at home. But on the same hand if you job is not willing to accommodate you then you might want to look for another job that you enjoy as much as this one.

Thanks for all the support you guys...it's very hard sometimes. Some days are are just bad and others are ok, It's just how things go with depression. I love the warm weather, but my body can't tolerate it for to long only an hour or so before it's back into the a/c. Yesterday was a great day and very rare for me. I usually can't stay upright for more than 1/2 hour and yesterday I lasted a couple. It was a nice change. I did sleep longer and better last night and I'm feeling symptoms today, but enjoyed yesterday and it was well worth it.

Just checking in with everyone. I have been having problems with my depression over the past couple of weeks and haven't been on line at all. Been reading, but haven't felt like posting. My PCP changed my meds for depression to cymbalta and he said it would take a little while to adjust and see a difference. Been very down and lying around....getting tired of watching movies. I did get up today and take the dogs for a walk by the river and even watched them enjoy swimming. Hubby and daughter went along and it was a nice quiet time of us. It was nice to finally see the sun after so many days of rain and clouds. Hopefully I'm on the up swing now and will be back posting often. Nolie

Nina, thanks for the answers. I am researching lots of sites to find what I think will suit me. My biggest concern is that I have always gone to everyone of my daughters softball games...I've never missed one, but last year it was very hard. Even though I sat under the tent in the shade, the heat made me so tired and fatigued that I ended up falling asleep before the end of the game. I want to try the vest to see if it helps. If not she understands. She was dx with pots this month, but her symptoms are different than mine. Activity makes her feel better so she pushes herself to play more softball. She is playing high school varsity this year as well as a traveling tournament league which she has been on for years. We spend the whole day gone and I would have to refresh my vest inserts in the cooler. I use to like to garden also and have been unable to due sodue to the heat. Maybe the vest would help me become a little more active outside. My flower beds sure could use some work. My husband just weeds it out and its pretty bare except for the green bushes and trees. Thanks again. Nolie

Nina, Do you like wearing it? Is it comfortable? or do you find it limits your mobility while wearing it? I am considering buying one, but the expense is a large step for our family right now with only my husband working and I have not been approved for SSDI yet. Do you know if insurance will cover any of the cost if it is proven by a doctor to help with symptoms? Just curious about how to go about it and see what people think of them. ps...do you wear yours under your cloths? I would love to hear your thoughts on this topic....it's always better to hear from someone who knows from experience. Thanks for your reply. Nolie