thejohnsongang

This is a very interesting article. While my daughter was an impatient at JHH for her endoscopy and other tests they asked to take fluid samples from her stomach for research. I wonder if this is what they are researching? It would be nice if taking an anti-viral medication would help with our fatigue. I will have to keep track of this subject and see what develops.

Just dropping in to drop off my 2 cents. I've had the same problem with "D" ever since I had my gallbladder removed. They treat me for IBS with a medication called Welchol. This is usually used for cholesterol, but it has a binding agent that works well for those that suffer from chronic "D". I take it daily and love it. No more "D" when I do take it. I did do some research and found that there is another disorder that causes these symptoms for those of you that still have your gallbladder. It is called Habba Syndrome. Here is a link about it http://habbasyndrome.com/_wsn/page2.html. I see a GI specialist later this month to follow up on my current treatment by my PCP. But I will not stop taking my Welchol unless they can give me something that works just as good or better. Like others have posted...I have some very embarrassing stories about my problems and lets just say they are not pleasant.

Thanks the information, I will keep it in mind. I'm just looking for options, but will not be doing anything until I talk to my lawyer about it. He's the expert on the disability issues and I will let him make the calls. Thanks again. Nolie

I agree with every one, especially Lina. Who has time or energy for fighting. W all need positive feedback and need to keep positive things in our life. This site is wonderful for that. Everyone is so helpful and nice and you feel truly like family. We are a "BIG POTSY FAMILY". For all the moderators....you are truly appreciated by us all and we are grateful that you take the time and energy to moderate this form. It benefits so many people in so many ways.

I posted pictures on the chit-chat forum for those that would like to see what Anna looks like. I even added one of her and her brother. Hope you enjoy.

Trying this again. The links do work this time. This link are both of my beautiful children http://i226.photobucket.com/albums/dd13/th.../bigbranden.jpg This one is her softball team playing Charlie's Angels http://i226.photobucket.com/albums/dd13/th...ang/bigteam.jpg And one of her batting http://i226.photobucket.com/albums/dd13/th...ongang/Tank.jpg This one is her last prom picture http://i226.photobucket.com/albums/dd13/th...ng/GoodProm.jpg These are just one's of her and her friends http://i226.photobucket.com/albums/dd13/th...ngsDominion.jpg http://i226.photobucket.com/albums/dd13/th.../meandsteve.jpg http://i226.photobucket.com/albums/dd13/th...ng/Katienme.jpg http://i226.photobucket.com/albums/dd13/th...g/GoodKatie.jpg Hope you enjoy. Nolie

Sorry guys it didn't work.

Wanted to let everyone know what Anna looks like. The last one is one of her and her brother. All the others are her and her friends just hanging out, her at prom or her and her softball team. If this doesn't work..I'll try again. Nolie <center> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/GoodKatie.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/Katienme.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/Tank.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/meandsteve.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/KingsDominion.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/GoodProm.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/bigteam.jpg" alt="Photobucket - Video and Image Hosting"><br><br> <img src="http://i226.photobucket.com/albums/dd13/thejohnsongang/bigbranden.jpg" alt="Photobucket - Video and Image Hosting"><br><br> </center>

Maggy, You certainly need to see a cardiologist or pots specialist to get things checked out. I'm not from the UK so I don't understand how your doctor network works. But I would not go see a doctor just because of something you read on this form. You have the final decision and what works for some does not always work for others. We all have different treatments and different symptoms. I would make an appointment, stick to it and see what they have to say. You can always say no if you think the medication is to risky, but with out trying it you won't know how it effects you. I would also suggest talking to others from the UK on this site to see what doctors they could recommend to you, since they understand the network. They could probably recommend some wonderful doctors to you. On the other issue my favorite medication has been beta-blocker. I take coreg cr at 40mg 1 time a day. I started on a very low dose and it did not help. The doctor has slowly increased my beta-blocker while monitoring my bp as beta-blockers do effect your bp. He said he would push the beta blocker up until my symptoms of tachy were under control or until my bp wouldn't handle it anymore. We went from 3.25mg 3 times a day and we are now up to 40mg 1 time day with the controlled release. I have finally got some relief from the tachy and my bp is still in safe range. If I get up and try to do anything my tachy gets really bad, but I not longer have the tach just sitting around. Its a much better feeling. As for the Lyrica I have not had any personal experience with it but my mother did take it. It helped with the pain, but caused her be very dizzy, lightheaded and out of it. Not sure if it was just her bodies reaction to it or if it was how the medication works. I wish you the best on it and hope it helps your symptoms. I hope you find a good doctor and some medication that works well for you. But definitely see someone for it. Good luck. Nolie

I was just wondering if he was fairly close to me. I have a pending disability case and was going to talk to my lawyer about if it would be beneficial to my case to see him or not. I was dx and treated by a local doctor on thats on the dinet website. Just looking for the best info/doctors for my case. The doctor the dx/treated me won't support my disability case do to the fact that he primarily deals with children and not adults. He was wonderful and I enjoyed seeing him but have since changed cardios due to insurance reasons. Again just looking for the best evidence for my file.

Flop, It's funny that you mentioned the sweat pattern down the front. I always though I was the only one to have that. The center of my forehead, nose, center of my chin, under my neck, cleavage and under my breast, sown my stomach, and the groin area. I have to change my bra and shirt several times some days. I use anti-perspirant on my underarms, under my breast and in my cleavage. I use baby powder in my groin area and on my stomach to help absorb the sweat and it also helps with my cloths not sticking to me. I wonder if this is a pots thing? When I do go out I keep a hand towel with me to wipe my face off. I keep acne a lot and feel that it is due to the sweating as I am 36 and should be over acne by now. I wash my face/neck often during the day. But no matter how much I sweat, my feet/legs are still cold and I wear socks almost all the time. Hot from the groin up and cold from the groin down...sounds like the pooling causes the cold legs/feet. Sweating if awful to deal with. Women should only sweat during childbirth not all the time.

Flop you are correct. The test was to determine if the GI issues are from her pots even though she is on medication. She did show that by vomiting twice while on the tilt. She failed the TTT due to the vomiting. Dr. Rowe knows she has POTS/NMH and didn't need the tilt to prove that. He is not the kind of doctor that would put Anna through it again unless it was necessary. And at that point he wouldn't use the isoprenaline. Anna keeps a very high heart rate most of the time. It usually runs around 120-130 when she get up in the morning prior to her meds. After meds her hr seems to stay 85-95. Her bp usually stays around 95/60 ish. The TTT was ordered by GI not her cardio for the GI symptoms. That way the difference in how it was performed and the medications given. This is what I have gathered from talking to all of her doctors. A regular TTT would be different if they were just looking for POTS/NMH. They do the test different when they are looking for different things. According to the tech that performed the TTT she did not show signs of increased hr or drop in bp which would show POTS/NMH, but they weren't looking for that. The test did show that she has vomiting with posture change which is what they were looking for. The posture change does effect her GI is some way. We are still waiting for the results. We have heard nothing yet, but I will be calling and checking this week just to make sure. (yep, I'm one of those "kind" of mothers ) Julie, my tilt was nothing like Anna's. And from what I've gathered on this site, this was one of those times that is very rare. I wouldn't be afraid to have another one at all. So if you need to have one, do so and don't be afraid of it. Talk to your doctor before hand and make sure you don't get the injection to make sure your experience is better. Dr. Rowe said that not all people respond to the isoprenaline the same. He said "SOME" people have the reaction like Anna did, but not all. I will let you know when I get the results. I'm very interested in the results myself and who knows, maybe her experience/results can help someone else on this board. As for the principal....what a person. Anna went and spent some time with him and I think this will be great personal thing for her as well as for her education. It's nice to have someone in your corner. We also found a great pediatrician for Anna here at home this week. She did her internship/rotation under Dr. Rowe and with the Ped. Allergy clinic at Hopkins. She gets it and understands it. Her and Dr. Rowe have already touched base and are on the same page. Looks like things are working out for Anna this way. Finally, someone close to home that can treat her for everything. Except for her 3 month check ups with Dr. Rowe we can stay close to home for her care. A 20 minute drive sure beats a 1 1/2-2 hour drive any day.

Lukkychrm, You are very close to were I live at then. Dr. Abdallah was the one who dx and treated me until just recently due to an insurance change. He is a wonderful person and always makes you feel good. His manner in dealing with people is amazing. I miss him a lot, but do like my new cardiologist. I live in a little town named Brunswick in Maryland. About 1/2 - 45 minutes from his sterling office. Kat was my favorite nurse until she left. So do you have a doctor in the UK already or will you be following up with Dr. Abdallah on return trips home. How long will you be abroad? Hope you enjoy your studies. Nolie

Megan, Did a quick search and found the following sites. They range in price from like $6 to $110.00. A very big range. Hope this helps. http://www.bella-jane.com/glove_3036_602_prd1.htm http://www.brightlifedirect.com/catalog/pr...=44&pid=235 http://www.nextag.com/compression-gloves/search-html http://www.dalepro.com/Supply/Product.asp?Leaf_Id=92744002 http://www.wisdomking.com/edema-compression-gloves

Megan, I see that you are from Manchester. Do you study here in the states as well? We also have a Dr. Abdallah here local to me and I was just wondering. Any way....I'm glad that your appointment went so well. It is nice to have that good feeling after an apt. As for the compression gloves...I would thing that you should be able to find something on the internet. They use compression gloves for burn victims...I'll do some research and see if I can find anything. I'll let you know if I do.

Well I did a search on here and found some info. Cardio from Ohio. Does he do any different treatment for POTS other than florinef, beta-blocker, midodrine, salt and water? Just curious.

Hey everyone. This might sound like a silly question, but I am curious. I see a lot of posts about Dr. Grubb and I was just wondering where he is located/practices at. Is he in with Mayo? And what is his actual title...cardio?

Willows, I'm so sorry that you are going through this and even more sorry that your husband is going through his ordeal. I know things are a lot different in the UK then here in the US, but are there any agencies that would provide a caregiver for your husband when he comes home? A day or night nurse. Would your insurance pay for a private nurse? Do you have any other family that might be able to come stay with you for a while till things get a little better for him? Just some rambling thoughts on how to help. I wish I could come help you, but your just so far away.... I will be keeping you and your husband in my thoughts and prayers. I wish you the best and him a speedy recovery. Hugs to you willows. Nolie

I have central ac as well as a window ac unit in my bedroom. I keep it "very" cold in my bedroom and still sweat. It ruins everything and I have to replace my pillows very often for the discoloration. For my cloths/sheets I soak then in vinegar prior to washing them and it takes the yellow stains out of the white cloths. The colors just have the bleached look and I can't find anything to help. My husband looks like an Eskimo due to the cold. When it gets to bad, he hits the couch. But thank god he likes it cold also or we would never sleep together. He's the cover hog thanks to me. Have you tried a fan or window ac unit to help while sleeping?

Mornings in short terms just suck. During the summer I'm fine and wake up "sometime" on my own. I can't stand the alarm clock either. I feel shocked or jolted when I hear it and it takes forever to settle down. Now that school is back in session, I usually use my 16 year old. She sets her alarm in her room and then comes and wakes me up. Just hearing her open my door is enough. I'm used to her voice and it never startles me. I'm sure not everyone has a 16 year old but it works great for me. She also has POTS, but the alarm does not effect her like it does me. If she fails to get up on time, my husband wakes me up when he gets home from work..usually about 1/2 hr later than normal, but still within a time range for the kids to get to school on time. I hope you can find something to work for you. It is a horrible feeling to be jolted out of sleep like that. Not a good way to start your day. Nolie

Sending good thoughts your way. Hope your line and you don't have any more problems. Make sure to tell the doctor to be "very" careful when removing the stitches this time. Your in my thoughts and prayers. Get feeling better soon. BIG HUGS Nolie

I had never heard of the "spoon theory until earlier today. Someone suggested a website to me for FM support at www.butyoudontlooksick.com. It was a wonderful way to get your friends to understand. I checked the site and the letter is copyrighted, but posted a link to add to your message if you wanted to share it with anyone. So here it is: www.butyoudontlooksick.com/the_spoon_theory It sure does make you realize that every spoon in your life is important. Even the simple ones. Good luck with your circle and I hope you can find support in them.

Thanks for the article. I will share this with my PCP and cardiologist. I have pain and that has been one of my largest complaints for years. Along with the fatigue and dizziness and brain fog. I have learned that medications help some, but I am on only a few for the POTS/NMH. The vitamins were just added to make sure it was not a vitamin deficiency and to see if they helped. Of all the meds I have tried, none have helped with the fatigue and pain. I am currently on Florinef 0.1mg, Coreg CR 40mg, midodrine 10mg every 4 hrs and asprin 81mg for my pots treatment. I take 3 allergy medications, zyrtec, singular and astelin, just so I can breath and this week they added eye drops (optivar) and eye cream(???) as they have been going crazy and my eyes are swelling shut and itching like the dickens. I also take a mulit vitamin along with all the new Vitamins. One pill for my IBS (Welchol 625 mg) and one for my reflux(priolec OTC 40mg). I feel like a drug store. I can only be up for @ 2 hours before I have lay down. Not only for the BP/HR issue, but for my legs and feet. If I stay up longer I get a burning/stinging sensation in my legs and then the start to tingle and ache. Sometimes they go numb. When I wait this long and then lay down the pain in my legs/feet is unbearable. I have to take pain medication and get my husband to massage my feet/legs and I usually end up crying because they hurt so bad. It feels like a bad tooth ache. Then when I try to stand again later or in the morning I can't. I can't put pressure on my feet at all and end up sitting on the side of the bed for ever making my feet slowly take the weight until I can tolerate it. Then I know it's going to be a VERY long day. I sometimes get this feeling in my arms also. No one has been able to explain why this happens. Along with all of this I am dizzy/ lightheaded, fatigued, have Tachy, am out of breath, ache all over, keep cotton mouth, have severe allergies, etc, etc...The list goes on as all of you know. My daughters cardiologist told me that FM runs hand in hand with POTS/NMH and all the other dysautonomic disorders. I feel that they are one in the same, but some doctors say no. My hr and bp are great when I'm sitting around or laying around doing nothing, but as soon as I start to get up and or move around..it jumps in like a hawk on a rat. As for the chocolate I can't remember what he said it was good for..I forget things a lot. I will be sure to ask him again at my next visit. I just remember him telling me to make sure it was only the dark chocolate and it had to be the 85% or maybe it was 65% pure caco. You can find it in the candy isle at the grocery story. I do remember him telling me that. So It's off and trying this new thing to see if it works. I hope it at least helps. As always I was told to get good sleep, exercise and eat good as well as high salt and tons of water. I think all doctors are learning to put that in their treatment program. Nolie

Thanks for the encouragement. I know that this is all linked together, but I just get depressed sometimes. I wonder if I will ever feel "well" again. A lot of the local doctors here don't believe in FM and think its just depression. I just get so tired of hearing that word. We all do. I went to see my PCP and he was great today as usual and we went over all of my health issues and tests again. He said that since I got the FM dx he wanted me to try something to see if it helped. He said that most people with FM have a vitamin D deficiency as well as low to no levels of certain vitamins. Since my insurance won't pay for vitamin testing he wants me to try the following for the next couple of months and he is going to follow me more closely to see if they help with any of my symptoms: Daily he wants me to take; Multi Vitamin with Iron Vitamin C 1000mg Vitamin D 1000IU Selenium 50mcg Zinc 50mg Biotin 1000mcg Then monthly he wants me to take 1 Vitamin D2 50,000IU. As well as try Yoga for Dummies. If I can tolerate it. He said this might help with my muscle/joint pain. He's not sure, but it's worth a shot. He also said a local health department offers a free clinic for people with FM. They work on relaxation and stretching as well as different ways to deal with chronic pain. He wasn't sure if they were still offering it, but wanted me to check into it. He also said that since I had tried anti-depressants in the past with no relief, there was no need to try again. So hopefully we will get a little relief if not more. Has anyone tried this vitamin mix before? If so how did it work for you? We did talk a little about substance P. If I understood him right ( I get confused a lot) it has something to do with the amount of pain receptors in our body and the higher the substance P the more pain you are in?????? does this sound right? On a lighter and better note he did say that eating 1 lg square of 85% pure cocoa dark chocolate a day would be good for me. Whooooa!!!! a prescription to eat chocolate. What a way to end a doctors appointment. I'm feeling a little better today and not as down about it all. I still feel the same so the dx doesn't change anything..except for the fact that I'll be swallowing more pills for awhile, maybe longer if they help.

Julie, I heard back from Dr. Rowe and unfortunately he doesn't have the results of her TTT. He did state the following: Nolie: the tilt results show no signs of NMH or POTS, but I'm not surprised by this, as she is on treatment, and her lightheadedness is in fact well controlled by the combination of Florinef, Yasmin, and the higher salt intake. The isoproterenol during stage 2 of the tilt test is pretty unpleasant for some people, and can cause shaking and a panicky sensation, so her response is not that atypical. Anyway, the tilt test can't be used in someone on treatment to diagnose NMH or POTS, but it can be helpful in sorting out whether the nausea and vomiting are related to upright posture, so we need to wait for the manometry results. I don't have access to those results. So we are awaiting the results. I can't believe that I haven't heard anything yet, but I guess since GI is handling it they are waiting for all the results to look at them all together before making a dx. Anna is starting to feel a little better, but I had to take her to our local pediatrician yesterday. She has a pretty bad sinus infection. Not sure why...hospital, decreased immune system due to fasting/testing or just plain bad luck. They put her on antibiotics 500mg 3 times a day. They always treat her sooner than they would other patients considering all of her health issues. Her spirits are up though and she even had a job interview yesterday for a PT job at Baskin Robins. She starts training next week. I'm worried about her working, but she wants to so bad....so we are going to let her and just watch her to make sure she doesn't overdue herself. She wants to save up to get her own car.... "teenager's" you know how they can be. And yes, it sure has been nice talking to you as we have gone through the same thing, but I do wish is was on a happier note. Everyone here is great and it has been a wonderful help. Sometimes I feel so isolated in our own community because no one understands. On the upside (if you want to call it that) when we went to the school to make accommodation's for Anna and to set up her 504, the new Asst. Principal was wonderful. His daughter has POTS so he understood everything and we didn't have to sit for hours to try to explain it. We did sit for hours and talk about local treatments and which one our daughters was on. His daughter sees the same cardiologist that I do. Sometimes it is a small world. Anna went to visit him the next day and she spent some time with him and he assured her that this year she would have a 504. He said it was necessary for collage and couldn't believe that they didn't do it last year. He also said that it was a lot of extra paperwork, but as an educator it was his job to make sure it was in place for her. What a great guy. Anna really liked him and I look for them to build a good friendship over the year. I think he will be a good advocate for Anna when she starts looking into colleges. It always helps to have more than one person in your corner. Anyway...good news and no news here. I'll keep you posted when I get her results. Nolie