maggie

Angela, I will be praying for your son, you, and your family. I'm glad you have a church family to help you through this difficult time. Keep us posted on your son's condition. God be with you Maggie

When I saw Dr. Thompson he explained that one with pots would be the most hydrated in the evening and that was he answer to why we would feel our best in the evening, if we had drank enough during the day. I hope this helps answer your question. Maggie

My daughter has a service dog and you won't believe how easy it can be. She is a dog trainer for Pets Smart and is calmer when her dog {bullmastiff} is with her. I looked up on the internet as to how to get a service dog. I actually contacted the government agency and actually got a live person on the phone to answer my questions. There are all sorts of services that are very expensive to train your dog, but in reality all you need is a orange service vest, which you can buy anywhere online and have a dog that is just trained to behave. I asked the gentleman about what if I lied and just bought a vest for my dog and he replied people wouldn't do that. No one is allowed to ask you when entering any public place why you have a service dog because of the HIPPa law. Your medical records are private. All the place can ask you is if your dog is trained and will behave in the store. Now my daughter takes her dog everywhere with her. In fact when I visit her I take my dog with use her service vest and take my dog into the stores so that she is more relaxed in that type of inviroment. Don't let these other services lie to you, you don't need to spend a lot of money on a cetain kind of dog unless you need the dog to do specific things for your daughter. Maggie

So glad to read that the surgery is over and all went well. I hope you get good news when they have the final results. Take care of yourself and David too. Blessing to both Maggie

I'm sorry to read that you're having such problems. I had the exact same symptons whenever I took a ssri. My liver can't handle any of those meds. I had the runs so bad that it was just like water running out of me for at least two days. It slowed down and then it took two weeks for my stomach to finally get settled down. I hope you are feeling better soon. Maggie

I just got done with my consult with my gi doc about having a colonscopy. My mother died with colon cancer therefore I need one done every five years. I have had two alreadly, but never with pots. He has prescribed 2 regland tablets to start and the to drink a gallon of NuLytely in the next six hours. Have anyone used this procedure for cleansing? If you have did you have any trouble keeping it down? Did you do it at home or in the hospital? It would help me feel more comfortable about this procedure if any member has gone through this and could tell me of their experience. Thanks for the help. Maggie

I live in south florida and did see Dr. Thompson. He is very nice and takes a good amount of time to see you and get all the facts. The difficult part is that he understands pots because he has it himself so he personally knows what you're going through. On the other side of the coin is there are times he has to cancel his appointments because of his health. If your driving any distance you don't want to get there and not be able to see him. He is up front with you when you see him. He explains all of this to you. He gave me a med to try and it took three weeks for him to return a phone call in regards as to what I should do. This is only my opinion, but if you want a doctor to be able to treat you he has to be well himself in order to do that. I have talked with another woman who lives here in south florida and was almost there when he cancelled her appointment. She made such a fuss that he stayed and saw her, but she never went back again. It's a tough call, because he is a very caring man, but his health is an issue. Only you can decide if this is a good fit for you or not. Maggie

My daughter recently had knee surgery and was given a machine called the Tense Machine. It uses electrical impulses to relax the muscles and stimulate circulation. She brought it home thinking it would help me. She hooked me up to it on my feet and on the lowest setting it made me anxious right off from the start. I also have pots but a mild case and that was my result from that devise. Maybe it would be different for you but I would definately try it out before I bought the machine. My daughter's was covered under her insurance so she didn't have to pay for it. Maggie

I also need a colonoscopy done, but for reasons that my mother died of colon cancer. I have had two already, but then I didn't have pots. I have a consultation with my doctor to show him my medical records and discuss how he plans on doing this procedure with my new health issues. When I talked to the nurse he now uses osmoprep, which is in pill form. When I looked it up on drugs.com I wasn't too impressed with this solution either. I see him next Friday so I'll let you know what he has to say and what he advises me to take. I have been researching about colonic irrigation for the cleansing instead of taking the meds, but I don't know if that is possible or not yet. I did talk to a nurse who does this and she stated that she thought inserting the tube might make my heart rate increase because of the pressure of the tube on the nervous system. So many decisions to make. I'm really not looking forward to this at all, in fact I'm quite nervous about the whole procedure. Maggie

I can emphasize with you, there is nothing worse to me then being so nauseous that one cannot eat. When doctors found out my heart rate was too high they immediately began to give me all sorts of meds to bring it down. I went from having a high heart rate to a person with a high heart rate and as sick as a dog! My doctor insisted that I see a GI doc, but I just knew it was the meds. In the end I never did need the GI doctor. I stayed that way until I got off the meds and then it took six months of eating very blan diet plus nexium to calm my stomach. I lost 40 pounds in one month from being so sick. I now know what I can eat and what I can't so that I don't get sick any more. You never know what can cause the nausea, I hope you find out what works for you so that you can feel better and eat again. Maggie

I had an experience similar to yours only it was from a cough med that had epinephrine in it. When I took the two pills I was alright, it was the second dose that got me. After having taken two more pills, I don't know how long after but my heart rate went to the 170's and stay there for almost eight hours. I went to the hospital right away, I knew something wasn't right. They hook me up to an iv and kept giving me fluids until my heart rate went down. Those were some scary eight hours. It felt like my head was going to burst and was so exhausted by the time my heart rate finally went down. My doctor told me I had a panic attack, but I knew it wasn't. Went to another doctor and showed her what I had taken and she knew right away what had happened. She had a similar experience with epinephrine. Maybe there is something in Ritalin that doesn't work for you. Maggie

Hey Stacie, I had plastic surgery after giving birth to five children, one set of twins. Needless to say I had some extra skin on my tummy left over,especially from the twins! My husband gave me a tummy tuck for my Mother's day gift after all the kids, before I had pots. I had the surgery and all went well. In three days I was up walking around and doing great. Ten days after the surgery I noticed I wasn't feeling well. I just laid around that day and in the evening we went out to visit with some friends. By the time I returned home I was misersable. I took off the binder they give you while healing and immediately the left side of my tummy rose and inch and was rock hard. I called the doctor and thankgoodness he lived close to me and he drove over to see for himself what was wrong. For some unknown reason I had begun to bleed internally. My husband rushed me to the hospital with the doctor right behind us and I had to have surgery again. This time it wasn't so easy. I had lost a lot of blood, they didn't want to give any infusions because of all the new information in regards to this, and put me on meds to help mend. It took me so long to recover this time around, too many surgeries too close together. My skin now was so sensivtive I couldn't let clothing touch me. I had to go through 6 months of therapy to be able to wear clothes that would lay against my skin. I hope this gives you something to think about, even under the best cirumstances things can go wrong. When my close friends saw what I went through to get a flat tummy to this day not one of them have opted for plastic surgery. I know my story is not the norm, but things do go wrong. Just some food for thought, Maggie

April, I'm so thankful that there is a safe place for you to share you longings for health, job, and most of all friends. All of us here on this site have lost so much of our lives, we can all relate to your sorrow over what you have lost. As we reflect on our lives and dreams about what could have been or what could come in our future we must leave room to grieve the loses we have incurred. Hopefully we can go through this process and come out on the other side and begin to treasure whatever memories we have from yesterdays, treasure the moment we have now, and then have hope for our future. I know many of us here will keep you in our thoughts and prayers that life will be better for you in the days to come and for all of us here on this site. May blessings come to you and your family, Maggie

I have had this test done and it is very easy. The place I had it done was the University of Louisville School of Medicine. If you go to the web site www.pgxlab.com you will get the information you need to get this testing done. I made the phone call in 07 and they listened to my symptoms and walked me through the process. You need a script from your doctor which you can down load right from your computer which I did. I went that day to my doctor got it signed and then preceeded. They would like to work with a blood sample but I couldn't get any lab here in Florida to send blood over state lines. With that they sent me overnight a mouth swab and I did the mouth swab and then overnighted it back. In five days I had my results. I really didn't understand the report so I gave the doctor I was working with a call and she explain throughly the whole lab result. The results my from test is that I have a liver enzyme deficiency,CYP 2D6 *3/*9. There are different levels of deficiency mine is on the lowest end of intermediate metabolizer. The doctor worked with me to really define this for me. I took a med and then I reported back to her the reaction which came back making me very ill on a very low dose med. She then stated I needed to stay away from any drug on the list they sent me in my report. Any med that goes through that enzyme I can't take. This lab only does pharmaceutical drugs so the doctor told me to be very careful with herbals. If they go through that enzyme I would have problems. I can't state clearly enough how much this place has helped me. If a doctor wants to try a new med all I do is call the doctor and she tells me if I can handle the drug or not. It has taken all the guess work out of what meds I can take and what I can't. I must tell you since this is so new many doctors don't listen to this. If a doctor won't I know I'm in the wrong place. My neuro had never heard of it and when I brought him the copy he imediately got out his palm pilot and entered the drugs on the list, they all went through that enzyme, he now is a believer in this testing. There is a phone number on the web site they will talk to you and help you. I hope this message helps those of you out there who are suffering just as I was from being given so many drugs I just couldn't take, and now I have the proof! Maggie

As I have posted on this forum before there are tests out there now that can determine if you can metabolize meds. I took it myself and it has made all the difference in my life, it takes the guess work out of this issue. Pharmacogenetic testing is rapidly becoming a part of responsible medical practice. It gives physicians the ability ot know in advance how a patient will metabolize prescribed medications, reducing the risk of adverse drug reactions and making it possible to prescribe the right dose for maximum therapeutic effect the first time. I took this test in 07, it's very easy, either a blood draw or mouth swab and wait for the results. I have pages of meds I can't take and now when a doctor wants me to try another med all I do is call my doctor at this lab and she personally tells me if I can metabolize the drug or not. The web site for this is www.pgxlab.com. They have a phone number right on the site and you can talk to someone right away about your health issues. I can't stress how helpful this has been to me. Hope this helps you. Maggie

Thanks so much for sharing you update. I think it is so important for those of us who are still struggling to read it is possible to recover. We might not recover completely, but enough to have fairly normal lives. I'm so happy to read that you are busy again with life, but please keep us updated so we can continue to find hope while trying to get healthy. Maggie

I agree it's so good to read about those who improve. Could you explain the process in short form as to how this took place. Did your symptons slowly start to go away? Did you have longer periods of goods then bad and kept improving that way. I am so curious to know the process that you went through to get to this point. Could you share a little more detail of these? Maggie

I'm so glad to see someone on this forum that is improving. Could you give us a brief summary as to how you were able to progress? Do you believe it was time, exercise, meds, or a combination of all. I am so curious as to your story because the doctors says I will get better the process is so slow that I'm starting to wonder if it will ever happen. Do you still have bad days? Can you do anything exercise you want without having setback? Sorry for all the questions but I would just like to hear the steps you went through to acheive your health. Maggie

If you go on pgxlab web site and call the number on the site they are very helpful in every area. They will tell you what tests you need and how much it will cost. I had mine done in 07 and know the prices have gone up some. When I had it done I had every test they could give. I was afraid they wouldn't be doing this type of thing any more and I wanted to know everything I could. My one sister had it done for alot less because she only did the test needed. Just call them they are so caring and concerned. At the time I had mine done they were looking for people to do this on for their research. Don't be surprised if you get it done and some doctors don't believe in this. I have had several doctors who never heard of this so they just dismissed this research. Then I know I'm at the wrong place. Maggie

I did have my dna tested by pgxlab and it was very easy to do. I just printed out the script online, my doctor signed, I couldn't get my blood sample sent from Florida to Ky so they sent me out mouth swabs and I sent them back. I have that enzyme trouble. I have a doctor's number who I call every time a doctor wants me on a drug and she tells me if I can take it or not. The test can't tell you exactly how bad your enzyme is but it gets you closer to some answers. The doctor I work with did a trial test with me to get a better idea of how bad mine was. Mine is so bad that she told me any of the meds that go through that enzyme I shouldn't take. It was the best money I ever spent. It takes all the guess work out of what meds I can take and what ones I can't. When I took the test they didn't take insurance, but they do now. You can pm me if you have any questions. Maggie

Hey Chat Forum Members, I just had a new thought to add to this project. I though maybe we could add our doctors to do a square also. It could be real easy for them. I could transpose their business cards onto their squares and maybe they could just sign them. If they wanted to they could write something on the square as well. What do you all think of this idea? Also I just e-mail my local newspaper and asked them if they would be interested in doing a human interest story about the quilt. I live in a little town and there isn't much news going on, they might just be interested. Maybe others of you could do the same with your local newspapers. They could take a picture of your square and I would gladly send them a photo of the finished product. It might be a way of getting our message out about dysautonomia into the public. I also e-mail Neurlogy Now, I receive their magazine and thought what could it hurt to contact them about our story. I'm open to all suggetions. I am so excited about this project and am having so much fun receiving all your requests. Maggie

Hey Flop, Your square is in the mail. I don't mind sending anyone a square who is out of the country, I hope you don't mind putting the postage on to send it back. It will make the quilt that more special to have squares from all over the world. So for those of you outside the U.S. sending those addresses or send me what you would like on your square and I'll copy your work to be put on a square. Looking forward to getting all these squares in the mail! Maggie

That's the best part is finishing the quilt and uploading the picture for all those who use the forum to enjoy. I hope this project brightens up each person's day whether they contribute to the quilt or just look at the picture. Thanks for helping me out with this I'm looking forward to seeng everyone's own personal square. Maggie

Suzy you do not need any talent at all for this project. The only think I'm asking of you is when you recieve you square you can write on it with a permanent pen anything you would want to share. I would like to see you use the same name that you do on the forum so once the quilt is done the others from this forum will know you did that square. I will be buying the fabric and sewing it together and quilting it, couldn't get much simpler. I look forward to see everyone's squares and putting them together. Have fun! Maggie

Hi my name is Maggie and I have been on this chat forum for a few months now and can't say how important this site is to me. I have pots and when I found this site it has helped me so much. I enjoy all the discussions and questions that everyone raises and it's really good to know I'm not the only one out here with this. I saw the notice asking for stories from Michelle Sawicki and wrote her that I can't write, but I can quilt. I'm am an heriloom quilter and have had to give up my business due to pots. I can still quilt, but I can't do the art shows because of pots. I offered Michelle to do a quilt for dinet and she liked the idea. I know everyone here likes the site because of the privacy that it brings. In order to do this quilt my thoughts are: 1 you can pm me with your address if you want and I will send you your quilt square. It will be 51/2" square. You may place anything you would like on this piece of fabric, I would like it to have something to do with you personally. It should have your code name on it, maybe your dx and some thought you would like to see used, all written in permenant ink. Please only use 5 inches of the square, I need 1/4 around to sew it together. When the quilt is finished we will upload it so all can see and maybe acution it off for dinet. I hope you all get involved with this project and I'm looking forward to working on it and with you. Maggie