maggie

Flop, I asked if the drops had epinepherine in it. The woman who was doing the exam said no. They know I can't have any med with that in it. As I have printed out before about this med it can cause nausea. I just must be extra sensitive to this med to have gotten so ill so fast. Maggie

Flop, Yes, it was fluoesceine. After I saw Alicia's post it made me wonder what exaclty was the drops they put into my eyes. I talked for at least 30 minutes on the phone with the woman who did the procedure. We both wanted to make sure that I didn't have this type of reaction again. We did discuss all the meds they use so that I could go over these with my neuro so that the next time I go in for an eye exam it will go better. Thanks for the help everyone who answered this question. It just shows a person how differently one can react to a med. Alicia this med was used to numb my eyes to see what the pressure was, this med was not used to dialate my eye. Maggie

Alicia, I can't take any antihistamine because of my liver enyzme problem. I called the eye doctor and now they are very concerned as to whether they will dialate my eyes now because of the reaction I had. They gave me the names of the meds that they use to dialate and now I have to call my neuro to get his opinion before they will see me again. I talked to the woman who numbed my eyes and she stated she had only put 1 drop in each eye. When I got sick so fast she immediately flushed out my eyes. Thank goodness she did that or who knows what would have happened, all in a day of POTS! Maggie

[edit] Health care applications Fluorescein drops being inserted for an eye examination.Fluorescein sodium is used extensively as a diagnostic tool in the field of ophthalmology and optometry, where topical fluorescein is used in the diagnosis of corneal abrasions, corneal ulcers and herpetic corneal infections. It is also used in rigid gas permeable contact lens fitting to evaluate the tear layer under the lens. Intravenous or oral fluorescein is used in fluorescein angiography in research and to diagnose and categorize vascular disorders in e.g. legs, including retinal disease macular degeneration, diabetic retinopathy, inflammatory intraocular conditions, and intraocular tumors , and increasingly during surgery for brain tumors. [edit] Safety Topical, oral, and intravenous use of fluorescein can cause adverse reactions including nausea, vomiting, hives, acute hypotension, anaphylaxis and related anaphylactoid reaction,[4] cardiac arrest,[5] and sudden death.[6][7] The most common adverse reaction is nausea, due to a difference in the pH from the body and the pH of the sodium fluorescein dye, however a number of other factors are considered contributors as well.[citation needed] The nausea usually is transient and subsides quickly. Hives can range from a minor annoyance to severe, and a single dose of antihistamine may give complete relief. Anaphylactic shock and subsequent cardiac arrest and sudden death are very rare but because they occur within minutes, a health care provider who uses fluorescein should be prepared to perform emergency resuscitation Thank you so much for helping with this question. I called the doctor and asked what was the name of the drops they used to freeze my eyes. Here is the answer. Maggie

I just had one of my most embarrassing moments of my life with pots. Yesterday I went to have my eye examine to update my lenses for my reading glasses and got so sick I had the nurse and doctor both throwing waste baskets on my lap as to not get heaved on. How can I get so sick so fast from an eye exam? I don't know if was from the nurse going back and forth with each eye asking if I could read the chart or if it was from them measuring the pressure of my eyes. Everything was going along fine until she put the drops in my eyes to do the pressure part. I made it through that and in two minutes{I'm not kidding} I started burping, turned white, and heart rate jumped up. She called the doctor in to see if he wanted to proceed to dialate my eyes and he stated no that they were dialated enough for him to do that part of the exam. They called my husband and he had to take me home, there was no way I could drive. Today I'm still having problems with my stomach, difficult eating, anything I put in there isn't sitting well, and I'm still burping like Miss Piggy. Has anyone else have this experience with having an eye examine? Any thoughts as to what brought this on so fast? Looking forward to reading your thoughts on this topic. Maggie

Hey fellow forum members I have a solution to your hypochondriacs dx. While trying to get my dx for pots I was called neurotic by several doctors. I believe these two words mean the same. I see a great psychiatrist who was helping me before pots. Now when a doctor even begins to start this type of conversation this kind doctor told me he was the only one who had the credentials to give this type of dx and if that if this topic came up in a conversation I was to tell the other doctor to give him a call and he would take care of this type of problem for me. He says I have enough to deal with by having this condition no less having doctors giving medical dx that aren't even in their field. I just politely tell them to give my psychiatrist a call and he will be more then glad to discuss my medical condition with them, it stops these doctors right in their tracks. I hope this helps others here, it's has worked wonders for me. I might hear these words but the conversation quickley goes in a different direction when I have a professional backing me up! Sometimes you to have to beat these doctors at their own games, and that's exactly what I have done. Maggie

I'm so sorry to read what a difficult time you are having. I didn't get pots until all my children were adults. I am finding out from this forum what a blessing that truely has been. Have you tried counseling with your children and you. I know it can be expensive but hopefully if you have insurance it could pay for it. Sometimes children need to hear this from someone else other then you. I know I have had to put limits on my adult children because of my pots. I can't have them coming to me with their problems, it just upsets me and puts stress on me and then I'm sick. My counseler sat all my family down, husband and kids and told them very forthright that this was a time for me to heal, they would now have to help me instead of the reverse. I have learned to put up bounderies and stay consistent with them. On days that I am ill this is still very hard to do. I'll keep you in my prayers and hope that you will be able to find others to understand your condition and lend a helping hand. Keep posting and let us know how things are progressing in your life, I know we all here want to see you and your family succeed. Maggie

There is a web site that is for the dental treatment for those with pots, it's: http://jada.ada.org/cgi/content/full/137/4...s=10&RESULT. I print this out for the dentist when I first found this article. It explains what must be done for the patient. I highlight the portion about the dentall for the dentist to see what is important in this article for them. Hope this helps. Maggie

Good new forum member! I just talked with Dr. Thompson and he said I could have this type of treatment before my colonscopy and it wouldn't hurt me even with my pots. I'm on to the next step a consult with the gi to see what can be done for me. Maggie

I'm using this as a tool for a one time cleansing before having a colonscopy done. I found a gi who is doing this for patients that can't keep down the stuff they give you for the cleansing. He works in Weston at the Cleveland Clinic and have a consult set up in Sept. I was just wondering if this colonic cleansing would have an effect on my pots. Maggie

I have been doing some research on this topic and have wondered if anyone on this forum has ever had this procedure done. I wasn't able to drink that nasty stuff for my colonscopy and am looking into this as an option. Maggie

I did get headaches from being on beta blockers. I rarely ever had gotten headaches until I went on beta blocker and then had them daily, dr took me off. Maggie

I'm really not understanding this issue. I have pots but did not get it from lyme disease, if I took these meds would my pots get better also? Maggie

Sorry guys but I'm not understanding this issue. Are you stating that people who have pots got it from lyme disease and if we take the meds that you describe our pots will go away? I live in Florida and thats when I started feeling sick and received my dx. Could someone please explain this in a more simple term? Maggie

BellaMia thanks so much for the recipe for the nutrition sport drink. I tried it today and it went well. I can't drink gaterade it has too much sugar and will actually make me sick. That's what I love about this forum. As we work together sharing our knowledge we can help others improve. I did put less sugar in and it still tasted fine. Maggie

Earthmother I have posted on this forum for the testing of drug interaction. I had it done and it has helped me so much. Now I know actually what drugs I can take and what drugs I can't, it takes all the guess work out of treating me. The web site is www.pgxlab.com it's a part of of the University of Louisville of Pathology and it's called Pharmacogenetic testing. They were so helpful to me. I still have the doctor's phone number who helped me and when a dr wants to try a new drug I give the dr a call and she tells me if I can handle it or not. You are correct in stating that the liver enzyme can't metabolize the drug. In some cases it's a little defective in other cases such as mine, I can't take some meds at all. I hope this helps those on the forum that are having such a difficult time with meds. Feel free to pm if you have questions in regards to this testing. Maggie

I tried to volunteer but no one wanted me because I couldn't commit to any schedule. I tried several places hospitial, library, church, red cross and none of them worked. I did finally find one place I could volunteer and that was at our local dog park. They don't care when I go or how many hours I put in and I love doing it. It took me a while to find a place but it sure is worth it. My dogs love to go and I love to sit and socialize with other dog owners. I hope you find some place where it will work for you.

My primary dx is pots and as I read the forum I notice that I don't have as many problems as others who have other health issues. I just have to deal with pots, high heart rate, exercise intolerence, tired all the time, and can't sleep well, just the usual symptons that pots gives one. Maggie

The question you asked is what do I do? The only answer is take it one day at a time, which is easy to say, but very difficult to live. I hope you have family and friends close by to lean on during this trial. It's not only hard to have the one you love see turn their back and walk away, but loosing the children will be even harder. With pots we all learn live for today and try not to worry about tomorrow. I'll be praying for you and your family. Try to deal with only the things that need to be dealt with that day and leave the rest for another day, you never know what is around the corner. Life is looking pretty grim now, but I hope the future will be brighter. Keep writing on this forum, we will all be here for you to support you in whatever way we can. Maggie

I'm so sorry to read the difficulties you are facing now. My husband has never left me and for that I am very grateful for. I have watched two of my daughters go through divorce and it was so hard to watch. I gave them a hand when they needed it, but one can't help too much with the emotional part of it all. I can't imagine going through this with an illness. I'll keep you in my prayers and I hope you have friends and family that can support you during such a stressful time. It's hard going through this healthy much less with an illness. Maggie

Tachy, Welcome to the world of pots. Most of us have endured modified rack, ttt more then once. Everyone experiences with this is different, that's what makes our club so exclusive. Most of us won't have the same experiences or same numbers. I have had two already and have fainted on one and was so sick afterward that the nurse quick gave me a garbage can to relieve my stomach. Needless to say since they put me through that torture I managed to miss the can! It takes awhile to recover from these tests, but in the end the "coach" needs these numbers to help you. I wore a heart monitor for 40 days to get my heart readings for one "coach", not fun. I had ring worm all over my body for weeks, but it does go away. Once again it was needed to see what was going on with my heart. This is just the begining so it seems you will have some adjusting to do. Keep posting though I enjoy your way of phrasing your experiences, although I must admit some times I'm not quite sure what you are referring to. Keep the faith hopefully life will get better. Maggie

Tachy, Welcome to our exclusive club! You have a great gift for writing creatively and using your talent to describe what all of us here go through everyday. I'm glad you found the forum and look forward to reading what else you have to write. Hope you can keep up your spirits as you keep running the race with the rest of us, but if not don't be afraid to express the need for support, because this is the place where you will find the best support team around. Stats: Surpine: don't keep track of bp heart rate: standing anywhere from 100 to 170 depending on time of day Arms above head: wouldn't think of doing that! Maggie

Congrats on your 5k walk. Everyone needs a goal and I hope it all works out for you. I would love to be able to walk 5k, but not at this time. I would call that a wonderful victory. Maggie

I find I have set backs and never can really pin point what brings them on. It really scared me in the beginning, because I thought since I was going backwards I wouldn't go forward. I have had pots for three years now and still not back to normal, but what I have found that going backwards is all part of the process. Just as you I would get so scared thinking this is it I'm not going to rebound, which would make everything worse. If you can somehow calm down and ride out this time I think you will see that you will improve again. I have gone back and forth so much sometimes it enough to make one scream! I now know to ride it out and in a few days even sometimes it's a few weeks I recover, slowly, but recover to where I was. Hope this helps. It's hard to stay positive with this disorder, but it's better to face reality head on and work through each episode. Everything to do with pots takes time and patience, all of us what to be well NOW! Maggie

I'm so glad to read that things are looking up for your son, I'll keep praying that his continues in this direction and for you as well. Maggie