sstephan

Thank you, everyone, for your relies and support. What is mrcp? If I have had an abdominal MRI, is this it or is there something more? I am surprised that my doctors have not mentioned anything about it.

Hi, I recently posted about sphincter of oddi dysfunction. I went to see a specialist in this field and he says that yes I do have sphincter of oddi dysfunction. He says it was not caused by my gallbladder surgery, however, my severe back/abdominal pain episodes started a week after the surgery. hmm Anyways the treatment is an ERCP which my doctor is one of the only doctors in Illinois who does them due to risk of pancreatitis. He said that one in ten patients gets pancreatitis. They cut the duct during an endoscopy. Then after twelve hours, you either develop pancreatitis or you are fine. The other option is to live with the pain spasms. I don't know what to do! I never know if and when a pain spasm will hit and the pain is just terrible. I am literally on the ground writhing in pain. However, I am scared of developing pancreatitis. I know it can be pretty serious. He said he does a thousand a year and one person every year has a critical case. I know the odds are slim but I do have a daughter to think about. I'm also scared how POTS will affect all of this. How do I make this decision? I am so frustrated right now and scared of medical procedures because I always feel horrible after they are through.

Yes! I have had a few episodes like this but not too much with the breating problems. One time I was at the ER after almost passing out in my car while driving. They had thought I had a stroke because I had trouble speaking and it was so breathy they couldn't understand me.

I know how you feel. I hate it when I can't slow my breathing down. I just try to stay calm and know that this too will pass.

Thinking of you and praying you are home soon, All the best, Susan

I don't know if this is related to POTS or not. A friend of mine has cystitis and I know she has problems with this.

My brain fog is the worst in the middle of the afternoon. I find it almost impossible to carry on a conversation and I just want to be by myself or lie down.

Hi Dayna, I'm sorry to hear that you have Shingles. Always something else huh? My sister in law had shingles and she is very young too. I have read that more and more younger people are developing shingles. I think the pain varies from case to case. My guess is that if you are not in alot of pain already, hopefully it will be a mild case. I'm thinking of you. Susan

I am thinking of you and I hope you are feeling better soon. Susan

Hi all, My doctor is prescribing Clonodine to me "as needed". I am a little confused about this. We were discussing what to do when I have a heart rate episode and don't want to go to the ER. She suggested I take Clonodine when this happens. I am also on a beta blocker currently. Does this sound right to you? Susan

Congratulations!! It is nice to hear some good news around here! Do you have a high risk ob/gyn? I saw a high risk doc when I was pregnant just because of the medications I was on. I think I felt safer knowing that my doc specialized in complicated pregnancies. My best to you for a happy healthy pregnancy! Susan

Just checking to see how you are doing. Please let us know. I HATE it when ER docs discuss the anxiety issue. I had my first gallbladder attack when I was pregnant and had not yet been diagnosed with POTS. I was seen right away and the docs thought I was having an embolism. Needless to say when this test came back negative, their attitude changed and I left with a prescription for Paxil. I feel you!! I LOVE the idea Lauren. I am definately going to keep this one to use. Please post and let us know how you are. Susan

Hello, I am writing a post just to vent a little bit. I am a teacher and I am going back to work in a week. I am feeling down for a few reasons: I have been home with my daughter all summer. She is going back to daycare shortly and I am going to really miss spending the time with her! It has been so great watching her grow and develop this summer. This transition back seems harder than last summer. (she is almost two) Also my POTS flares seem to worsen when I am stressed and trying to manage the balacing act. My principal is pretty understanding, yet I end up missing a fair amount of days between myself and my daughter having to stay home due to fevers, etc. It is also difficult to deal with POTS symptoms in front of my students. I am seeing a specialist this week for the sphincter of oddi spasms, but there is no way I can just continue to teach if I am experiencing one. My principal is used to me coming into his office to lie down and relax while my heart is racing or I am having a pain spasn, yet I am scared that he will ask me to go on disability. This has been going on the past two years and how understanding can he be? I really do love to teach and I love seeing my students everyday. But my symptoms are much worse when I am stressed out. I am really sad about leaving my daughter and not sure if I am up to handling another busy chaotic stressful school year. Just needed to sort out my feelings here. Hope everyone is feeling well, Susan

Hope you are feeling better and that you did not have to go the ER. I had a CT with contrast and shortly after I drank the dye, I felt very nauseated. The whole thing seemed to bring on another flare up and I had stomach issues for days. I hope you are feeling better by now! Take Care Susan

Hi Shannon I too have problems breathing. At times it feels like my exhale is so long that I just can't get a deep breath. The only advice I have to offer is that I just try to stay calm. I get aches in my hands and joints but I have carpal tunnel. Sometimes wearing a brace works and if it gets really bad my neurologist is able to give me a shot that helps a little. At least your summer job is almost over! Take Care Susan

Hello, I have the weirdest thing but it is probably not any relation to POTS. For the past month or so, I have had this round white discoloration patch directly next to the bone on my ankle. It sort of feels just like dry skin but the discoloration really stands out. It is not really a growth or anything and it doesn't hurt. Now it looks like I am getting another one next to it. It is the weirdest thing, but I really don't want to go to the doctor about it. What if he just tells me it is a dry skin patch? I will really feel stupid. I know I am overly sensitive, but before I was diagnosed with POTS I felt like I was going to the doctor with new symptoms all of the time. Should I be concerned about this?

Hi everyone, I just had an appt with my GI doctor because I am still experiencing SEVERE pain spasms in my uopper abdominal area and back. I had my gallbladder out a year ago and this actually started AFTER the surgery. Today we discussed sphincter of Oddi spasms and I have an appt to see someone who specializes in this at Northwestern Hospital in Chicago. The diagnostic test for this is an ERCP which apparently can cause pancreatitis. There are not any doctors at my hospital that do this procedure for this reason. I am very worried about this and don't know if I should go through with this or not, but the pain spasms are worse than childbirth. (this is not an exaggeration- I use the techniques I learned in my childbirth class to get through them!) Has anyone had any experience with this or had an ERCP done? Thank you, Susan

Glad to hear the news Melissa! Keep going strong...

I'm glad it went so well for you. I had a half finished root canal for almost six months. I just went back to have it finished at a new dentist! The dentist I was going to used novicaine with epi and I felt horrible right away and for days after. Also he wouldn't listen to me about the chair. He would lean it back so far that I felt like I was going to fall off onto the floor. Way too far even for someone without POTS. I was very scared to have it finished. This dentist also scheduled two hour appointments! He did not get it that I could NOT stay in a chair like that for two hours plus have novicaine with epi. Long story short I found a WONDERFUL dentist who even researched the condition before seeing me. I had my root canal finished with novicaine w/o epi and the appt only lasted twenty minutes. He was able to work with me being somewhat upright and I am so grateful. Just make sure you have a dentist to listens and understands. Susan

Melissa I am thinking of you and hoping you are feeling better and out of that darn hospital very soon! Susan

Hi, Abby was born at 39 weeks and I was not put on bedrest amazingly enough. The stunted growth issue is interesting. Her doc does not say she has any stunted growth because she is growing normally. However, she is on the short side!! She is only in the fifth percentile and is a little shrimp. (but very fiesty let me tell you) For me, I would not have made it through the pregnancy without Toprol. The second I miss a dose, I have racing heart and palps that are just awful. However, I do regret taking Zoloft during the pregnancy. I too feel that this was part in cause of her jitters. During the pregnancy I never had a diagnosis yet. I know my docs were beginning to think it was in my head and that I was just the "hormonal pregnant lady". It was actually an ob/gyn I had seen in the ER that prescribed the Zoloft when they could find nothing else wrong! I don't know what medications your doctor is considering, but I always took the advice of my ob/gyn over the other specialists. I figure her main concern is the baby and not our illness, so she will give her opinion in best interest of the child. Hope you are feeling well. Susan One other thing- don't know if you are considering an epidural but this naturally lowers your blood pressure. My cardio was aware of this and was on call during my delivery. (since they really didn't know the problem yet) I did have an epidural but they gave me a shot of epinephrine to counteract that. Make sure the anethesiologist knows your health history. Hi, Abby was born at 39 weeks and I was not put on bedrest amazingly enough. The stunted growth issue is interesting. Her doc does not say she has any stunted growth because she is growing normally. However, she is on the short side!! She is only in the fifth percentile and is a little shrimp. (but very fiesty let me tell you) For me, I would not have made it through the pregnancy without Toprol. The second I miss a dose, I have racing heart and palps that are just awful. However, I do regret taking Zoloft during the pregnancy. I too feel that this was part in cause of her jitters. During the pregnancy I never had a diagnosis yet. I know my docs were beginning to think it was in my head and that I was just the "hormonal pregnant lady". It was actually an ob/gyn I had seen in the ER that prescribed the Zoloft when they could find nothing else wrong! I don't know what medications your doctor is considering, but I always took the advice of my ob/gyn over the other specialists. I figure her main concern is the baby and not our illness, so she will give her opinion in best interest of the child. Hope you are feeling well. Susan One other thing- don't know if you are considering an epidural but this naturally lowers your blood pressure. My cardio was aware of this and was on call during my delivery. (since they really didn't know the problem yet) I did have an epidural but they gave me a shot of epinephrine to counteract that. Make sure the anethesiologist knows your health history.

Hi Katie Boy can I relate, I was not diganosed with dsyautonomia until after my daughter was born. Therefore, they had no idea what was wrong with me and I was on numerous medications throughout my pregnancy. Toprol XL- took this throughout due to heart rate issues Reglan- as needed (I don't react well to this pregnant or not pregnant) Vicodin (was given at the hospital) Zoloft- I believe the last trimester only Protonix- entire pregnancy Nulev- as needed Lots of acetominephin (sp?) I have a beautiful one and a half year old daughter. Due to severe pain which turned out to be my gallbladder, I was forced to have a test where they inject dye to check for embolisms. I was very very nervous about this although no effects to my daughter that I know of. Abby's birth was uneventful for the most part. However, after she was born she was very jittery for two days. The nurses just said it was her nervous system adjusting, however, my gut feeling has always thought it was a side effect of all the meds I was on. Abby has had some cyanosis episodes over the past year which are not cardiac in origin. My doc thinks she may be showing early signs of some autonomic issues. She has been to specialists that assure me not to worry and it is not due to medication. Otherwise, she is very active and healthy. I really don't know what advice to give you. Could her autonomic issues be related to medication? unlikely due to family history but you just don't know. It was very nervewracking going through this but my high risk specialist monitored me and the baby the whole way through. Just remember that if you are not feeling well it is not good for the baby either. Your gut instincts will tell you what is right for you. My best to you and your baby. Susan

I have severe back pain and an ultrasound showed a small kidney stone. They are not sure if it would be causing the pain however.

What were your symptoms cardiotec?

Hi Dayna I also have this problem when trying to go to sleep. My chest feels so heavy and I feel like I just can't get a deep breath. I actually sleep with three or four pillows because I have found that this helps me breathe at night. Wishing you a night of peaceful slumber Susan