mngirl

Before Christmas I was in the hospital twice. And in between the two, somehow my heartrate started being normally in the high 80s and 90s. I was on a holtier monitor and we found some major issues. So, my doc placed me on digoxin to slow down my heartrate. Well, it worked TOO well. Now my heartrate went to the 30s and low 40s. I could barely stand up! I felt like my heart was going to stop. So, needless to say, I backed off to half the dose he put me on. I have an appointment tomorrow to tell him I did this. I called him last week to talk to him about my eating issues and forgot to mention this...I was feeling to crappy. At least the med did what it was supposed to...now we have to figure how to get all this under control with something else. Oh...what to do anymore. This POTS stuff is truly AWFUL! ~Lisa

How did they test for this? I cannot eat a thing without taking my medication...Kytril. Which over Christmad break slowly stopped working...so I tried doubling the dosage. I can now at least eat half a piece of pizza and a little soda at any one meal sitting. The nausea is debilitating. I cannot take Compazine, Inapsine or Regelan (sp?). The Zofran doesn't work anymore either. And now the Kyril, which was really the last resort is slowly not working anymore. My doc is at a loss as to what to place me on anymore. He thinks that I have some auto immune issue where my body fights its way around all the medications I am on making them unuseful anymore. I am so afraid that is what is happening. Because we are at the end of all the lists of meds for many of my problems. This eating issue is getting out of hand. I lost another 10 lbs this past week. My doc said the last time that he thinks they need to do this test where they give you something to eat or drink and they watch it flow through your system and watch how your brain responds to having food in your stomach. If it is a stomach/brain connection issue, they can place what is like a pacemaker in your stomach or neck to stop that response and you can eat again. This is the last thing I need, but I am afraid that I am not going to be able to avoid this. Chirstmas was horrible due to this. I was in bed not eating or drinking a thing for 3 solid days. The naesua was horrible. The worse it has ever been. And it just increased the dizziness. When I tried to be up...even to get my medication, I would start sweating. Dripping wet sweating, like I had just run a marathon. I have NEVER sweated like that before...not even when I was younger, working out or doing sports. I was very gross. Anyway...I am just looking for answers. TIA. Lisa

Well...I wore it for 2 days...when looking at the results, as my symptoms got worse the heartrate also went up...so things matched up. But there were also quite a few times I showed symptoms of dizziness and my pulse was at 78 or so. My pulse didn't go anywhere below 42 and as high as 128. He showed me the graph of my heartrate. And he said that if another doctor looked at it thinking they were seeing a prefectly healthy person, they would think that it looked just fine (except for the periods of amjor stresses). But given that I am on the medications I am on...enough beta blockers and anti arrythemia medications, my pulse should be A LOT lower and should NEVER get up in to the 100s from just walking. So, he is not exactly sure why the medication is doing all this. So we switched some stuff up. Traded the Nadolol amounts around (20 mg in the a.m. and 10 mg in the p.m.) and then double the Digoxin. He also asked me if I was still feeling the lightheadedness and feeling like I was going to pass out. I told him yes, that I had that feeling walking into the clinic that morning. He thinks that I am haiving issues with discerning between lightheadedness and dizziness, feeling of passing out with a rapid heart rate. He thinks that my heart is racing way more than I think it is. So, I asked my dr why I still can't eat....his respsonse....Because you are weird! LOL....Gotta love 'em. He is still not sure why I cannot eat. He says that he thinks that it is from some of the medications that I am on. But I asked hiim that when I started having issues eating, that I had been on the same medication that I had been on for a while. So, I have been taking Kytril since I have been out of the hospital - without it I cannot eat. So, I asked him again yesterday why I still can't eat and brought up the fact that I am on the EXACT same meds that I had been on back in the summer when things were actually pretty good. He said, "good point" Without it I have amazing painful stomach cramps and VERY bad nausea. Today I had that even though I had taken it...I am a little scared about this. All my medications lately have slowly stopped working - my body has decided to fight around everything they give me...then we need to try to find something else to keep everything under control. After today, I am a little scared that that is what is happening with this eating medication. Without this...no food at all without BAD results. Since my doc thinks that it is due to some combo of medications we talked about changing some up to see what it is (which we have tired before with no results)...but he told me that he didn't think that we would be able to do that without keeping me out of the hospital. Just what I wanted to hear. Although if this medication is starting not to work anymore I am going to end up there anyway! Today I have had a cookie, a piece of bread and a strawberry shake...all which have been sitting at the back of my throat all day. I feel SO AWFUL. Just what I needed during Christmas time! I hope that tomorrow is different! He thinks that the Nadolol is no longer working, so we are going to try this switch of dosage and see if it makes any difference. Anyway...Anyone else have issues with your body fighting against all the meds? So he is thinking some odd autoimmune disease...What do I need to do to determine that? What tests? Who should I see? Oh....then last Friday I had my 1st round of Botox injections. I was told that I would start to feel the effects (as little as it would be due to how tight I am in my back) with a week. Well, I have been in some pretty good pain. I have been having issues lifting anything with my right arm. And I can tell you EXACTLY where she injected me. So, I called into the neurologist to ask if this was normal...was this what I was supposed to be feeling. The nurse told me that that is not what I would be feeling...it should be numb, not painful. So, she told me that it had nothing to due with the Botox. Bologny!!! So, I told my dr yesterday about the pain and what the nurse in the neuology dept said....His response...What in the "heck" does she think that the pain would be caused from? They injected you 12 times with poison! Does she think that that would NOT cause some pain? Maybe she needs to have it done and experience it! I had to laugh...That nurse also told me that the issue with the chest pain had nothing to do with the injections either, which I also TOTALLY dispute and told my doc that. He said, well technically it is not a DIRECT side effect of the injections, HOWEVER, my body reacts to this stuff and fights back and unfortunately the chest pain is the result of that. So, my concern is what is going to happen with the next round of shots? More chest pain? More pain in my back? Who knows. And they had issues accessing my port yesterday for my Lidocaine infusion, so they had to bring in someone from Oncology to put it in...well, she couldn't get it in twice...I asked that she try ONE MORE TIME...she did, I told her to try a little higher up...and it went in...however...when they flush it with saline, it burns...which she said it should NOT hurt and that I shouldn't feel anuything....well I can feel the saline going into the port and into the veins. So, she is going to suggest a dye study to be done to make sure that some of the saline is not leaking out of the vein and causing issues. Another test, yeah! The start of the new year brings the start of the new insurance year...anyone else thrilled by that? That means I need to pay another $1700 in medical bills before my insurance really kicks in. Well...I will meet that with my first 3 infusion treatments....and my Botox injection at the end of Jan ($1000 per treatment!) I am going broke trying to get better.... Well...I guess I should get going (it is almost midnight) and I need to make a baby blanket yet! While feeling like crap! I started taking Lunesta last night. I took it at 11 last night, and I slept until 1 this afternoon - at least it worked! So, I will say good night and Merry Christmas! I hope you all have a wonderful holiday! ~Lisa

I think that did help a little. It still went up enough to get me breathing pretty hard just walking up the stairs and walking through the mall. It was as low a 42 and has high as 122. PRetty good swing if you ask me. As it got lower, I was really getting light headed. The funny thing is that before I was in the hospital the past few times the beta blockers had me at the low 50s and high 40s - that was normal. Then I got out of the hospital and normal is not high 70s and 80s. Same meds, same everything...what changed? And now when I try to do ANYTHING I get EXTREMELY exhausted right away. It *****. My doc thinks that I have some type of autoimmune disease that my body is working VERY hard to work around ANY medication that I try to throw at it to help my body. So he thinks that the beta blocker they had me on just stopped working (Nadolol). So now he tried Norpace (didn't work), now this Digoxin (helping just a little I think). I was supposed to have the results of the holtier monitor today, but my doc was out of the office unexpectantly and will be out tomorrow too. He will be back on Wed and Thurs. I have a LARGE Lidocaine infusion on Thursday (7 hours of treatment), so I am hoping that he will come and talk to me then, if not call me on Wednesday when he get back in the office. I am a little concerned about my body being able to handle it this large of a treatment. The last time I had this done, it didn't go so well, but I am going to be gone so long and need to try to get a treatment that will get me through the time until I get back. I also had my Botox treatment on Friday...what a bad thing that was... I went in on Friday morning before work. I thought that she was going to do the shots in the same places that my doctor currently does my trigger point injections, but NOPE, she did about 10 MORE! She did them at the base of my neck, through my right shoulder and down my shoulder blade (which were all normal), except that she had my lift my arm when she did the one at the base of my shoulder blade...then came the ones that I didn't know about. She started at the top of my back and went straight down my spine. I have had pins and rods placed in the base of my back a long time ago and it is VERY SENSITIVE. Well, she made it all the way down there - talk about PAIN! She said that I am UNBELIEVEABLE tight, up am a good candidate for the Botox shots. She said that I am going to need more treatments of them just to get them to a point of some relaxation. Sounds like another 3 or 4 rounds. Then she said once we get them to a relaxed point, she is going to send me to physical therapy to RELEARN how to use my arm. Between the elbow issues and then hitting my head and having these knots, I have been BABYING it just a LITTLE BIT Anyway....so here is the BAD part...I made another appointment for another 6 weeks (any sooner and you body starts to make antibodies against the crap she is injecting into you)...I then headed back to work. About 10 minutes after being there, I started having a harder time taking a breath, then my chest started feeling thight...then CHEST PAIN! So I called my doc right away and asked about it. She told me to get back there RIGHT NOW. So, I get in my car, head back. I get into the office and she says "There is a possbility that I nicked your lung and it collapsed!" I NEVER KNEW THIS WAS A POSSIBILITY! So, I was sent down to get x-rays and an EKG. Then headed back up to the office. Both came back normal, so they called my doc to ask what he thought they should do. He said go home and rest...when I come back at 3 to get my holtier monitor to stop at his office afterwards. I went home, got in bed, took a nap...Then I headed BACK to the clinic to get my montior. I got all hooked up and headed to talk with my doc. He said that he is not sure why my heart is taking such a shock from these medications. The EXACT same thing happened with the Nicoderm med last week. He placed my on a different medication to try to slow down the heartrate issues that I have been having. So, hopefully it would help and show up on the holtier monitor report. He said that he would have it today. I haven't been able to sleep. Last night I went to bed at 5 this morning and got up at 6:30! Luckily, I had my infusion and then was able to take a nap through my infusion - that helped to get a little rest. Here is how nice the nurses that I deal with are. Come the new year a new department is going to be doing the infusions and I will be dealing with a new set of nurses. Well, the one I have now, she gave me a HUGE hug before I left and said that I need to make sure to come and talk with her when I am for treatments. She is pg right now, so I think that I am going to make her a baby blanket as a thanks for all the help that she has given me. Not many have such a great resource available to them, I feel awfully lucky. So, please cross your fingers that Thursday goes well...I can't take much more. I'll let you know the results of my monitor test...watch it show NOTHING! Which I can't imagine. I also woke up at least 6 times on Saturday with EXTRMEME chest pain...the pain alone woke me up...so something is going on. Anyway... Thanks for reading this long saga...I am not sure how many of you actaully read all this...I know that I tend to complain a lot...sorry about that. I just need to get it out somewhere....so thanks for letting me do that here. ~Lisa

I want to start by saying too...I LOST my medical alert bracelet! I ordered a new one yesterday and I am hoping that it comes tomorrow - they said within 48 hours - I got it from medicalert.org, they have free shipping right now, which was great - I got a PINK one! The only thing is that it is smaller and I have recently learned that I have more allergies. I left it to them to medically decide what is the most important info to have on there. I figured that if it isn't what I wanted then I will order a larger one and request what I want on there. Sorry for the off topic start....but I am just SO mad that I lost it and didn't even recognize it. You would think that you would hear it hit the floor. I called the 2 places that I went to this past weekend and they haven't found anything. Watch...as soon as the new one comes I will find the old onne. So, on to the main topic here.... We had the POTS stuff under control until I went into the hospital for the 16 days. While there we increased my beta blocker, which should have LOWERED my pulse rate. Prior to going into the hospital my heart rate was in the in 50s - great...while in the hospital it started jumping around, therefore he increased the beta blocker. Ever since the hospital we cannot get it under control - it is like the Nadolol stopped working. So, we tried Norpace a week and a half ago without the Nadolol - bad choice, I couldn't stand...so back on the Nadolol. Then we tried the Nicoderm last week with bad reactions (see other posts)....so we are not trying the Nadolol WITH the Norpace. And it still is not making ANY difference. As I sit here (I am hooked up to one of those heart rate monitors people use while exerciseing)...the alarm is set to go off if it is below 45 and above 120....it is going off constantly and it is anywhere from 109-170!!!! Just sitting here typing! Today it was going off while driving with my boss to a meeting...that was in the 150s - and I was just sitting there doing nothing! The other day at my infusion, on the beta blockers, sitting there my pulse was in the 80s - not normal. If I get up to walk around it gets into the 110s I was thinking that there was something wrong with the watch I am wearing, but each time I am hooked up to the monitor at my infusion it is RIGHT ON...and when the nirse takes my pulse manually, it is right on then too...so I have a hard time believing that all this is wrong. My dov told me yesterday that he thinks it is an arrhythmia that just started for some reason....due to all the drugs? Actually yesterday morning my heart rate was in the 90s and then dropped to 42! odd change from it jumping up. He told me that he also thinks that I am developing an autoimmune disease where if I go off a medication to try another and then that one doesn't work and I try to go back to the old one, it won't work anymore...that is the issue with the Nadolol he thinks. I asked him about taking away ALL my meds and starting over, but he is afraid that I won't ever be able to take them again because my body will reject them! We've increased the Methadone in hopes that would help a little...Seems that we are just constantly increasing the dosages. I am not up to taking 16 pills twice a day, not including the Lidocaine infusions twice a week or the trigger point injections! I am afraid about this arrhythmia thing...isn't the only thing to do to fix it is a pacemaker? I just can't imagine. I am so dizzy all the time from all this too. I can't walk up a flight of stairs without passing out or feeling like I just ran a marathon. I still can't eat and we are talking about this test for watching how my body processes the food stuff. And possibly having to have a pacemaker type thing just to be able to eat! Imagine that...a port...a pacemaker to control the arrhythmia and a pacemaker to eat! Along with the pins and rods I have in my back - I will be Robo Girl pretty soon! I am totally freaking out about all this.''' Now watch the holtier monitor show NOTHING! And I know that something is happening because I can't walk without just about passing out and this DANG watch alarm keeps going off. I just wish that he was with me just once when the alarm goes off. There have been many times that while shopping I have had to stop and hold tightly onto the shelf because I feel like I am going to collapse to the floor. I am almost tempted to puchase another one to see if I get the same results. This is a good one to begin with....even though, I just want to see if it is me or what. The only other confirmation that I have had, is that when I get on to my treadmill and hold onto the pulse checker it too says that my pulse is really high. Even the when we were purchasing it, I was checking it and it was 145 - the salesman said that it must be wrong, so he turned off the machine and I did it again...145....so he started to tap on the screen thinking it was broke or something. I was funny becuase that day I could SO feel it becuase I couldn't walk straight and was running into things. anyway...I guess I will have the results of my monitor on Monday...we'lll see what it says. Oh....and here is a suggestion...I made the staff in the Internal Medicine dept at my clininc cookies for having to put up with the 10 calls I make to them every week and the 3-4 appts that I have with my doc per week. I told them that I was sorry to be such a pain in the butt and I just wanted to say thank you for getting me in to see my doc, when they are making others wait a lot longer to get into see him. They were all so GRATEFUL....everyone of them stopped by during my infusion to say thank you (even one that has been a little stuck up with me since all this has started, I won her over)....I have cards to the special 4 nurses that I deal with weekly (3 for my infusions and my doctors personal nurse) and then I gave a card and cookies to my doc. They all couldn't believe that I thought of them and took time while not feeling well to make them treats...they were all so touched. My one nurse even gave me a hug on my way out....Now that is the type of staff of nurses and docs that I hope you all have. I feel ever so grateful that I have the medical staff that I have access to. They are switchin all infusions over to the Oncology dept at the 1st of the year, so I will have to learn a bunch of new nurses. But it will be good. I will then know almost ALL the nurses on my floor of the clinic as I have had the Cardiology dept do my infusions too (Internal medicine does them now)...and now it will be Oncology...the only other dept on that floor is OB-GYN, which I have attended a few times too, but don't know them so well. Anyway....treats win them over....think about it So, wish me luck that something shows up on that thing otherwise he is going to think that I am a crackpot - although he sees it during my infusions, so he knows something is up. Okay...that is enough for now, I could write a book tonight....thanks for reading....wish me luck...I truly need some....I know my doc knows something is wrong and he doesn't think that I am crazy at this point, but I don't want him to start thing that. Time for bed, if I can get to sleep. We are having a snow storm tonight and are expecting to wake up to 6 inches of new snow! I HATE driving in this crap...I SO want to move out of MN! NIGHT ALL! I'll update when I have some news! ~LIsa

Yesterday during my infusion I made sure that my dr came in to see me, even though he was on hospital duty - I asked that he come to talk to me - HE DID! I asked him about the shots and he told me that I would have them by the end of the week (last Friday the nurse could only get it scheduled on Feb 6th! - Another new year, a new insurance year). He said he called the neurologist and explained to her what he wanted and that he wanted them this week! What a doc! So I called this morning and asked that they call my cell to set up the appt. She said she would call within the hour - well....no call....so I called back and she said she was just about to call....yeah right...anyway...I told a little white lie, but I don't care, I am doing what is best for me. She told me that she couldn't get me in until next Wed. (This doc and I DO NOT get along and I DID NOT want her to do it, but right now she is the ONLY neurologist in town). I figure that she would end up canceling my appt and it would be into next year before I got the shots. So...here is my lie...I her that I was going to be going out of town Tues night so I couldn't do it next week. So she put me on hold....when she came back on she asked if I could be at the clinic at 7:45 am before it opened and she would do it before she saw ANY patients or did any paperwork for the day!!!!! SCORE!!!! I wanted to take someone with me though as a witness as to how she treats me during the process - the past events have not been the greatest. But since it is so early my husband has to take our kids to school and daycare. I have a coworker who said that she would come along with me...I am still debating that one...I feel bad making her come along with me. What would you do? Anyway...in the past my doc said that he would do them, but when it came down to it he was afraid that he would put in too much and then I wouldn't be able to move my arm or anything. He said that he was glad I have so much trust in him but he was more comfortable with her doing it. I think that she is going to train him on how to do it for next time though. So...I am getting about 7-8 shots at the bottom of my neck on the right side...the right shoulder down through my shoulder blade. I so hope that it helps....that means no more weekly trigger point injections - possibly no more chiro appts either! I am so hoping that this STOPS my headaches. So, wish me luck!!! ~Lisa

I get thoe Lidocaine injections every week and a half - they last about 3 days for me and then it slowly builds up again and thenn time for another injection. I would try to get this approved if I were you - it is supposed to last from 3-6 months! ~Lisa

Today I started the Nicoderm patch - boy what a BAD idea and reaction. I couldn't stand, walk or move my head around. My chest started to feel tight and my mouth got dry, it was even getting hard to swollow. So I called my doc, the nurse said that she would leave hima message. About 15 minutes later it was getting worse and then I started having chest pain. So, I called back and I told them I need to know what to do now, because if he wasn't going to see me I was going to go into the ER. The nurse went and talked with my docs nurse and she said dont' send her to the ER, we will fit her into his schedule. Have her come in now. I couldn't drive, so I had a friend from work drive me and walk me up to my docs office. They had me go into the office and lay down. My doc came in and I told him what was happening. He said that the Nicotine was supposed to have a calming effect, not making my other symptoms worse. So, he gave me a shot of Toradol to try to help with the chest pain. That only took the edge off, then he had the nurse give me some Demerol - that helped, but knocked me on my butt. That was at 1 this afternoon and I am still feeling the side effects. The bad thing is that my chest STILL hurts. I had to have my DH come and get me (Oh, and he had to just go get Eric from school because he was sick too! - He feels better now thought, thank god). I came home and went straight to bed. BUT when I was there I told them that I got the Botox approved and gave them the letter, my doc said, lets see what we can to today while you are here. I figured that he would try to get it done, but given all the other crap he didn't. So his nurse called down to teh neurologist (the one I HATE) to see if she could do it - the appt is for FEBRUARY 6th!!!!!!!!! I have to wait THAT LONG! I asked my docs nurse that he said he could do it if he knew the dosages. So I asked her to talk with him about him doing it - I trust him WAY MORE than this neurologist. So, on Monday when I go in for my infusion I am going to see if he will do it or not. I was hoping to get it done before the new year and my insurance starts over. BUT IT IS APPROVED!!!! and they said that they are only approving it one time, and if it works they WILL Approve it again! YIPPPEEE!!!!! So, that was my day, both bad and good! Please let him tell me that he will do it and hopefully it will be next week! ~Lisa

My dr is hoping that it will help control my blood pressure and keep some blood upwards to keep me from tipping over. He is also haoping that this will help with the eating issue. Right now I HAVE to take Kytril just t o eat. He thinks that the Nicoderm will get me to eat too. He says that if this doesn't wotk then they are going to go a test where I swallow this stuff and they watch it go through my system to see how long it takes for it to make it. And then he was talking about some type of gastroentenial (sp?) pacemake type thing that will short circuit the message that to my brain that says I can't eat. I guess they can either play it in your stomach or our neck somewhere. Sounds odd, so I am hoping that the Nicoderm works. Funny thing is that I have NEVER smoked a day in my life and now I am going to be addicted to nicotine through a PATCH! Nice, eh? He just isn't sure what to do about this stuff. He said that I must have some autoimmune disease since when I go off something to try a different drug to try another one. If the new one dosn;t work, I go back to the old one and it doesn't work anymore, or at least not to the same extent it did before. Example is this Nadolol. I went off it to try this Norpace and now that I am back on the Nadolol and it just isn't working like it did before I went off it. At least it was doing a little good, but now it isn't doing much of anything. The bad thing is that this Nicoderm is going to act like caffine according to the pharamcist and I am already having issues sleeping. I have been going to bed between 3-4:30 in the morning and then getting up at 6:30 to go to work! The one good thing I found out yesterday is that they made add the POTS, Addisons diability stiff to my work comp disability - combine it into to one and approve it all...so that when I want to stop working and go out on disability it will all be ready. I told them that I won't do that until I get an approval or denial from Social security disability. Because then we just afford to live off my work LTD. Anyway...that is my update. I am going to start the Nicodrem CQ tomorrow. I'll let you know how it goes. ANyone else use this for their POTS? ~Lisa

It didn't show anything in the hospital, but then I was sitting in bed and not doing my normal activities. But my heart rate monitor watch I wear everyday. So he wants me to do normal stuff to see what is going on. I am now going from 50-60 to 130-140s. He thinks that I am going to have to be on BOTH the Nadolol AND the Norpace, but that is going to have to be after stuff settles down. My infusion knocked me out today and once again my port hurts. anyway...just thought I would give another update. ~Lisa

I have been on it since Friday and I can barely keep my eyes open even though I am not tired. I can't walk well and I am SO DIZZY! My heart rate has stayed in the 60-70s all weekend - never jumped up - so that means it is working, but I can't take it at these other side effects. I don't even think I am capable of driving and I am not even sure that I am going to make it to work tomorrow it is so bad! I just have to share a warm fuzzy though...My 6 year old lost his first 2 teeth yesterday and today. The bottom middle ones. He let me crack them and I got to pull one out and he took the other out tonight. I LOVE being the tooth fairy! He was so happy and I was so proud of him since they were pretty sharp roots. Anyway...just an update...anyone else have any advice on the Norpace? Oh...EXTREME constipation (which I am sure you all care to know about) ~Lisa

So here is what happened yeseterday... Basically, I went in and told the new nurses what happened on Wednesday (issues with pain in my port), and we decided to see how it was going to go. Well, they got the port in, which went fine. Then they started to run just saline through and it started to BURN! So, they said that they weren't going to continue until my dr. came in. I asked that they continue the saline to see if it would settle down because I thought that maybe it was just a reaction to the alcohol. Well, it didn't stop. Then I asked them to switch it to the Lidocaine with hopes that that would help deaden whatever was going on. The issue is that if I push on the port, it feels better. They told me that they wanted to wait until the dr. came in. But I kept asking stating that it couldn't really get much worse. Finally they agreed and started the Lidocaine, which of course started to burn just a little more. So, I sat there and waited for him to come in and talk with me. Finally he came in and we dicussed what has happening. It is one of a couple of things...none of which are very good. It is either, VERY irritated nerves and every time we use the port, it could just get worse. Or, when they placed the port in, the blood vessel that they put it into may not be able to handle the medication running into it. OR...it is developing scar tissue on it and causing some issues. If it is the 1st or 2nd one, then the port needs to come out. We are going to give it a couple of more weeks to see if it gets any better. Then we also talked about my heartrate issues...it is STILL jumping all over. So, we traded medications. He took away my beta blocker and traded it for a medication that is for arythemias and it only effects the pulse rate and not the blood pressure. Which should be different since I have been on this other med since March. And we are going to see if it makes any difference by Monday. If not, then I don't know what we are going to do. And a scary event happened during my infusion. The medication always makes me very tired, so I sleep a lot through my treatments. I am hooked up to an EKG, an oxygen reader and a blood pressure cuff to watch me throughout the treatment. Usually I have issues with the blood pressure and the pulse. Well, while I was sleeping all of a sudden the alarms went off...my nurse came running in (she knew I was sleeping) and here it was that my oxygen levels were dropping. When she came in it was 82, when it falls below 90 it is a BIG DEAL. So, she wakes me up and I was having issues being able to breathe. She started having me take REALLY deep breaths, which was really difficult. It came up to 86...I had to sit there and try to keep taking deep breaths, which I never thought was going to be so hard. It took a long time, but finally I got it up to 92, which she was satisfied with for the time. I was told to try to stay awake for the remainder of the treatment...but I couldn't and luckily the alarms didnt go off any more. It was a little scary. Of course, then when they took the port out, it felt like I was being stabbed again...and continued until I was able to come home and basically drug myself up. Today it is at least a little better. Well, I left to go get my new med (Norpace)...So, I went to Target to get the med, they don't have it. I sat there for 35 minutes while they called Walgreens (they were on hold the whole time)...finally they came and told me to just go to Walgreens myself and if they didn't have it I could call to order it. Walgreens didn't have it. Luckily I had a phone book in my car and started calling. HyVee...Walmart...finally I called Shopko and YEP...THEY HAD IT! I started taking it last night. I could barely stay awake last night...I couldn't even make it through the 1st 10 minutes of the "Sisterhood of the Traveling Pants" movie. My DH fell asleep too. I fell sitting up...and finally woke up at 5 this morning - still sitting up, with the TV on and the lights on. Nice, eh? Well...I got up this morning and couldn't walk. Every step I took, I ened up taking 2 steps back and was SO DIZZY. Today I am having issues with standing, walking and just sitting with being so dizzy that I can't see. I am not sure if this is just due to the change of meds or if this med is just not going to work. My old med should be out of my system since it has a short half life. I am a little concerned, because I don't even think that I am going to be able to drive a car. I am actually going to give that a go...don't worry, I am going by myself and going 8 blocks to the grocery store. (The weather is TOO BAD here to go anywhere else). If that is not going to work, luckily I have an infusion Monday and a talk with my dr. So, that it where things are at at this point. I don't think that I am going anywhere this weekend...just due to this med switch. Even trying to focus on typing this has been a chore. The pharamcist told me that EVERYTHING was going to be slowed down being on this med and he couldn't have been any more right. Even turning my head or picking up my arm...getting up off the chair...everything seems like it is in slow motion. I have been tracking my pulse and of course, it hasn't changed it AT ALL! So, why is all this happening? I really need a doc like on the show "House" - anyone know a doc like that? The only good thing at this point today that my youngest son (3) is FINALLY TOTALLY potty trained - not even diapers at night! YIPPEE!!!! Well...I am going to do ALL of my Christmas shopping online today and get it ALL done! Now, I just hope that it all gets here in time. As I told my husband the other night...I just feel like a VERY useless human being that is just taking up space...I never thought in a MILLION years that I wasn't worth anything and couldn't do all the things I thought I would. Thanks for being a sounding board...having to listen to me complain...I am sure that you all are tired of listening to my sagas...I think that it is just so hard to find the positives when I feel like such crap. I am sorry for being such a downer and I apologize for taking up posts all the time to complain about my life. I DO have great boys and a husband, unfortauntely my mind is just trying to survive at this point. Sorry, but thanks for listening...a big bowl of your favorite ice cream to you all who listened...I am not sure that there are many of you...but I totally appreciate those that do. ~Lisa

My good news from today: I asked at what point does that thought come into mind, and he said that I should start filling out paperwork now. That he would support me in anything that I needed. He said that he didn't think that it was going to be much of an issue given all the problems and considering I am in his office more than I am at work. HE said that there is no guarantee that any of this is EVER going to get better. Here is my bad news from today: I had my infusion today. She accessed my port, which didn't hurt, but then when she started to run stuff through it, it started to really ache. I made it through my infusion and then...She had to take it out...and I would have sworn that someone stabbed me with an ice pick! The nurse said that she needed to tell my dr about it...I told her that I prefer that she not...I was told that the pain that I am having may be a chronic nerve pain issue (such as my arm, my head, my chest) and that each time they access my port they are hitting nerves which can't take it. If this continues, then they are going to have to take it out. So, if it happens again on Friday, serious thought is going to be given by my dr to take it out. I BEGGED her not to tell him. I said that taking pain meds afterwards would be my preference. She said she still had to tell him. I asked if we could wait until we saw what the treatment on Friday was like, nope...she is telling him. I am TOTALLY afraid that he is going to say "Take it out before it gets worse." Since I didn't get to bed until 4:30 this morning, partially due to not feeling well, my dr. has told me to up my methadone, since I have been on it so long, he thinks that my body has adjusted to that dose and we need to up it. I am so hoping that it will help with this stabbing pain I have from where I had my treatment today. I had some trigger point injections done today too...only one feels like it worked, which also *****. WE are going to try a new med on Friday...just what I need another med...at least it would replace one! So...something has to give and at this point it is going to be my sanity! I just sat and cried with the dr today. I think that he has had enough too. Anyway...just had to update after today. ~Lisa

knew something was up when on Thanksgiving day I couldn't keep my eyes open to even eat dinner with my family. Then that night my new port site started to itch and get a rash. Friday I slept all day and the rash was getting worse. So I called into the doctor's office and asked about the port because I was told to really watch it. They told me that as long I as didn't have a fever I was okay, but that if I did get one, that I needed to get into the ER. Well...Saturday morning, guess what I woke up with...a fever, 100.9. We were in the Cities, which was 2 1/2 hours from home. I didn't want to go to an ER/hospital which didn't know my history, so we quickly packed up and drove as quickly as possible to get home. On the way back my husaband was making calls to anyone we knew to see if they could take the boys while we went to the ER. Luckily, we have some GREAT friends to hve 2 kids the EXACT same age as E & O who were willing to watch them for us until we knew more. So, we dropped them off and headed to the ER...and sure enough, when we got there my temp was 101.9 and the port was hot and not looking very good. So, they told me that it was probably going to have to come out. The surgeon came out and told me that I had 2 choices - to just have it taken out, or to sit in the hospital for a couple of days while they fed me as much antibiotics as possible and wait for the cultures to come back. If it was positive, then the port DEFINITELY had to come out. So, I have been in the hospital since Saturday. The cultures came back fine, they are not sure what the infection was from. The problem is that my left arm, shoulder and neck REALLY hurt - they even thought I had a blood clot, even did an ultrasound for one - so they definitley thought something was wrong. So I asked the surgeon today if that is going to happen EVERY time I get any type of infection. And the surgeon said that that is a possibilty. And if that is true, then they WILL have to take the port out. So, I am out of work until Friday, I have a dr appt tomorrow and an infusion on Thursday at which time my internal med doc is going to decide what in the **** to do about all this. They hooked me up to a heart monitor to watch the spikes in my heart rate which had been happening for 2 weeks. that morning that put me back on the Flornief (which he took me off because he thought it was causing the dizzies after I had spent the 18 days in the hospital a few weeks ago) and while on the monitor it didn't do it once! I just hope he doesn't think that I was making it up or anything, even my DH was concerned and was making me wear it to bed to make sure that nothing was happening. So...anyway...I am hoping that it was the med that stopped it from happening. So I am hoping that it was just the exhaustion of being in the hospital before that was casing it all. I am going to continue to wear the monitor and see if anything changes over the next few days. Now I have the next few days off work, which I am sure that they are just THRILLED about. I think that I have finally come to the conclusion that I think that I am going to start applying for permanent disability. I can't keep having things like this happen and try to keep working with getting some kind of reprecussion - which I know they can't do, but will anyway...plus, that work evaluation is supposed to be coming up. At least I can delay it a little longer since I was in the hospital again. But once that happens I am sure that I won't have a job. So, I need to make sure that I start this disability stuff soom, otherwise I will end up with no job and no disability. Anyway...that had been my past 4 days. Here is something that I am SURE you are going to be SO GLAD that I told you...I've only gone to the bathroom 2 times since Saturday and yet they didn't think that was an issue when they discharged me from the hospital! Amazing. I wasn't my dr who discharged me, I was a little mad about that, it was the surgeon and he just didn't have a lot to say. For now, I get to keep my port. But, it may not be for too much longer at this point. If I have to have it taken out, it better be before Jan 1st - when my new deductible starts...LOL...although I will fulfill that with 2 infusions, so that won't be an issue I guess. I have just SO HAD IT WITH ALL THIS....I CAN'T TAKE IT ANYMORE! I hope everyone else had a wonderful Thanksgiving...I would give anything for a good piece of pumpkin pie that I missed! ~Lisa

He took me off the Zyprexa! And told me to take an additional Klonopin and take the Dilaudid (not as needed, but scheduled). If this is STILL happening on Saturday then he wants me to call him AT HOME to see what we need to adjust! I asked about totally taking away ALL the meds and starting over. He said that I would not be able to work for a while since I would be TOTALLY screwed up. And unfortunately, I just CAN'T do that right now. I am in the BUSY part of my job, which lasts until June! If I would do that right now, I would probably lose my job. Maybe I should just consider disability at this point. I just can't believe that this is all happening. What the heck is causing this high heart rate all of a sudden. We had this under control. We also talked about the fact that we CAN NOT take away the Kytril. He said that he has no other med to give me to solve that problem. But he has some other beta blockers to try. So, I have a few days now to see what is going to happen. I am a little scared about taking 3 Klonopin at once and adding a Dilauded on top of that to get to sleep. Maybe I will try just 2 tonight, then 2 1/2 tomorrow and then 3. Anyway...I just had to tell you about the great dr I have! ~Lisa

Well, I just got out Saturday after 18 days in the hospital (there is an old post around here somewhere talking about what happened)...anyway...since Monday I have been hacving MORE dizzy spells and a racing heart. My dr added a few new meds while I was in the hospital - added Florinef, Dilaudid, 2 new kinds of sleeping pills and upped my beta blocker. Here is what I am on at this point: Prednisone - 2.5 mg twice a day (for my Addison's) Methadone - 5 mg twice a day, can double if needed (for rt arm and head pain) Midodrine - 10 mg in a.m., 7.5 mg in p.m. (POTS) Mobic - 7.5 mg twice a day (chest pain from POTS) Lamictal - 75 mg twice a day (POTS) Nadolol - 10 mg in a.m., 20 mg in p.m. (POTS) Lidocaine Patch - 5%, all day (Ulnar Nerve Transposition Problem, RSD) Lidocine Infusions - 300 mg twice a week (RSD) Dilaudid - 2 mg, as needed (For pain from implanting port and headaches) Florinef - .1 mg in the a.m. (POTS) Kytril - 1 mg four times a day (Allowing me to eat from nausea which we do not know what is causing it - this is the expensive drug insurance wasn't going to pay for $6000 a month! They finallyt approved it though) Klonopin - 1 mg at bedtime (Sleeping issues) Zyprexa - 10 mg at bedtime (sleeping issues) Heparin Flush - for my port they just implanted So, on Monday I started getting the AWFUL dizzy spells back and I started to feel like I had been running a marathon. My dr wrote a prescription for a treadmill thinking it would be goos for me to start walking more. We went to find one. AsI was walking through the mall I was having issues walking in a straight line, I almost ran into a few benches and almost passed out about 4 times. So, we finally found one and it had a heart rate monitor on , so I stepped up on the treadmill to test it out (the treadmill was not running). The salesperson told me that I just had to grab the handlebars in front of me. I grabbed the handles and the readout said 145! The salesperson, said it will take a few seconds to adjust. I told him that I have a condition that would make that reading possible. So, he turned it off, turned it back on...the reading was then 140! Then he started tapping at the screen, like that was going to help. I felt like I had just been running. My husband had a heart rate monitor watch so I have been wearing that for the past 2 days. My rate has been from 80-120. And that is on my upped beta blocker! My rate in the hospital a few days eariler was 52! My dr thinks that maybe it was the Florinef (I wasn't on it prior to the hospital). We are stopping that over the weekend and see if it makes any difference. I am constantly feeling dizzy, like I am going to pass out and racing heart. We had this under control prior to the hospital...anyone help me figure out what is going on? He wants me to keep the monitor on through the weekend and really watch what is happening. My dr even stated that he expected my pulse to be low 40s, not 140! Today I ran into my hallway wall and a few cubes at work because I can't walk straight - nice, eh? So...what do you all think? TIA! Lisa

Thank you all so much for the well wishes...I still have not gotten the meds approved through insurance. My dr was able to get his hand on 2 sample tablets. So I have to take them right before lunch and hope it holds out until dinner so I can eat. The drug rep comes in on Wed and they are going to ask him for some add'l samples. Then they will call me in to give them to me. I have another infusion on Thurs, so I hoe it is approved by then. They put a rush on it and told them if they don't approve it I will be admited to the hospital to get the medication, so they will be stuck with that bill instead! Today was actually a good day...My infusion went well...they gave me some pain meds,,,my port is working GREAT...I would recommend it to anyone who has to get pricked as much as I do. They told me to take 4 times my pain meds and double a dose of another to reduce the headache pain I am having. Anyway...I just wanted to tell you it was a good day...I never thought I would say that any day soon. Thanks again for the well wishes...they are definitely working! ~Lisa

I may be going back! Here is the long story...Friday the 28th I was put in for dehydration. We expected it to be a 48 hours thing, even my dr thought so. But things just started to get worse. I couldn't stand the smell of ANYTHING! My DH couldn't even have a life saver in his mouth, I made him leve the room with it to throw it away. according to everything I had lost 16lbs from all this the day I checked in. We tried EVERYTHING to stop the nausea...even merinol (pill form of pot!)...I was given 3 BAGS of fuilds the 1st day I was in there I was so dehydrated. Overall, I think that I got about 12 bags or so of fluids. I had an allergic reaction to one of the anti-nausea meds...my face and jaw started to tighten up so much that it was being pulled in different directions, I thought I heard muscle tear. The nurse had never seen it before. Something like this happened one other time to me and benedryl helped. I got VERY LUCKY...my dr was in the next room. The nurse ran next door and he came in right after her. He had to figure out the antidote...I was crying so hard because of how much it hurt. I would get enough of a relaxtion to allow me to swallow and it would start all over. My dr figured out the antidote and cthey called it to the pharamacy. They had to sit there and watchme and couldn't do a thing...I was crying so hard. The med WASN'T COMING and my dr was getting mad. He stepped outside my room and I heard him call the pharamacy and ask where the **** it was. They said that it was on it's way up. So my dr had a nurse waiting at the tube to get it quickly. Once they injected it it took about 3 minutes and it COMPLETLY dissolved and my muscles loosened up. Then as I was talking with him it started again. Luckily they sent up several doses and the 2nd one was the last I needed. So, now I cannot take any anti-nausea meds in this family, which basically is all the ones the give out. They even tired out a anti-nausea bracelet on my wrist - didn'y work. We tried tons of other meds, nothing worked. I didn't eat for about 2 weeks and was only surviving on the fluids. A few days ago they FINALLY found a med that worked. It is one that they give to cancer patients before they have the chemo treatments. I have to take it an hour or 2 before getting up ottherwise I have throw up or hav the dry heaves. Then I have to have it an hour before every meal, or else I cannot eat. We are still not sure why. We have also been trying to calm down my headaches...we found a med to help with that, but I can't work being on this stuff...a narcotic...They found me a new sleeping pill that I actually wake up RESTED from. I was having issues walking...the dizzies were so bad...I couldn't get to the bathroom myself or even shower myself! DH gladly volunteered though LOL! They had put in about 12 IVs...I had finally had enough. I requested that a pic line or port be placed. So yesterday morning, I had minor surgery and they placed a port on my left side. So, no more IVs or blood draws through my arms...The port is sticking out a LOT more than they thought. You can definitely see it...We got to use it last night for the 1st time. We did a mini lidocaine infusion (100 mg) in the ICU. We started it at 10 pm last night and it was done at 2 am this morning. But, I didn't feel anything when the put the needle in! And it is an INCH LONG needle! I am SO HAPPY that they put it in. I am a little made that we didn't do it sooner. My dr and I had a GREAT talk this morning about everything. I talked to him about getting a counselor. I have to get a list of the in service providers and then we are going to talk to see who may be the best fit for me. We talked about the meds (I am adding 4 MORE to all the ones I already take - this is all so I can just eat and liveright now!)...We talked about work and the lump I still have in the left side. He said that if it is still there in 3 more months they will aspirate it and make sure it isn't anything (that would put it at it being there for 6 months!)...We talked about the Botox injections the insurance won't cover...he told me that he is just going to do it and not charge me for it (A $1000 treatment!) It was just a GREAT conversation. We talked about my infusions...I felt so great after talking with him this morning....We went to the hospital gift store the night before and I asked them about the medical alert bracelet chains and if they would be interested in them, they said they would be! So I made a business connection there! Then the day got worse... We left the hospital...had to go to Target to get my new meds. Well...we get to the pharamacy and they tell us that one of the meds(the pain med), they don't have. But here is the KICKER!!!!...The ONE medication I NEED to be able to EAT is NOT COVERED by insurance and it is, get this $6000 for the prescription!!!!!!!!! $6000!!!!!!!!!!!! He called the oncall doc who just doubled one of the other doses of meds and guess what, it isn't working. I came home to quicl to make sure to eat. Then the stomach cramps started and now I am feeling sick. I was taking this on a schedule in the hospital. So, now I am supposed to wait until MONDAY when I go in for my infusion in the a.m....And then HOPE that the insurance co approves it Monday! I could cry right now...something FINALLY works and then I can't get it or afford it! So, unfortunately, if this continues to tomorrow morning, I am checking myself BACK into the hospital until the insuance company approves the meds! I so don't want to go back. I just got out! Owen just smiled at me today and whispered "You came HOME! I love you!" I feel so awful that I had to leave my boys like that. Luckily my mom came up from Texas to help out again. A TOTAL saving grace! People at work have been GREAT! I never heard of this person, but my DH's work got us a chef for 2 weeks! So, all meals are taken care of (never even knew there was someone around here to do that!). My co-workers have been good, my boss is another story though. I guess he has been rolling his eyes when my name is brought up, etc.... Right now the port hurts...and my beck on that side hurts too, my dr was afraid of that...but hopes it goes away. But, I am just so afraid of having to go back in. I am getting the watery mouth (my pre-throw-up warning) - sorry about that gross picture....Why does this ALWAYS happen to me! $6000!!!! What the ****!!!!!!! So, if you don't hear from me tomorrow...I will be back in the hospital just to be able to eat. I was hoping that I this was coming to a close...I have an infusion on Monday morning which will be interesting. I usually have itover 4 hours, but this one will have to be over 8 since the port is so close to my heart. I hope that nothing happens then too. He added some Florinef (which we tried once before and it didn't work very well)...but it seems to help this time. We added 4 more drugs, but without the one to help me eat, I am not feeling too hot! So...Brownies to all for reading the post this far....Cross your fingers.. Lisa

I have Addison's Disease AND POTS. Definitely get a good endo, although mine was thorough, I had issues with him. He didn't want to diagnose me with POTS because my test results needed to fall EXACTLY within HIS limits. I was .01 off on one test and therefore, he said nope, not ADDISON'S! I asked for an additional test...one test that is not used much anymore for the diagnosis of Addison (Metrypone test - don't do it). The research said that if you DO have Addison's have the test done in the hospital because it could cause an adrenal crisis. Since my dr classified me as not having it, he said it was just fine doing it at home. I said NO WAY, you do the test, you do it in a hospital. So, I checked myself in. At midnight they gave me 10 ALMOND size pills to swallow. By the time I got to #4, I knew that there was going to be a problem. 20 mintues later I started to throw up what I swore was gasoline. I honestly felt like my throat was melting away. I threw up again and again. By the morning, I felt barely alive. Things just started to snowball. Funny thing is I was told BEFORE the test that it would take a week to get the results. By morning this endo said the results were NEG! I was getting WORSE! I ended up in the local hospital for a week before they transferred me to Mayo in Rochester, where they ran a bunch of additonal tests. That is when they also diagnosed me with POTS! (I had been having issues with dizzy spells, standing, walking, etc.) THEN I also found out that the results of that other test were actually POSITIVE! Go figure. They believe that I had an adrenal crisis caused by that test...oh and my respirations went down to 3 a minute - they even called the crash team in! How is that for "the test can be done at home!" I cannot IMAGINE what would have happened had I done that. Anyway...It has all made sense. I have had MAJOR issues with being able to recover from anything. I would get sick and it would take me twice the normal time to get better. Sores don't heal...I can't handle stress well, my body comes apart. So...I now take prednisone for the addison's and increase it whenever I start to feel sick. If I start to get the flu, I have to call my dr and go in for an additional shot of meds to help battle it off. Unfortunately, even getting the flu bad enough with Addison's can kill you. Never let it get to that point. Right now it is not so good here. Due to some new meds I started (and they just came on the market), I haven't been able to eat for about 2 wks. I have lost 14 lbs! I just can't seem to fight this for whatever reason. I have stopped the med and my dr thought things would get better, well, unfortunately, it's not. My dr. is giving it to Monday to get better and if it isn't I think that some extreme measures are going to have to take place. Anyway...that is my story with POTS AND ADDISON's. If you have any questions, shoot them my way. I was told that Addison's is rare, so any info people have always tends to help. ~Lisa

I have had several MRIs, three with contrast dye...The first one I did have a reaction to - pain, the shakes, headache...the ones after that they had me take Benedryl AND prednisone prior to the MRI - both of those I had no problem with. I would definitely take something like this if you can if there is any chance that you feel something may happen. Neither benedryl or prednisone is going to hurt you for one dose. I would talk to your dr about it - it surely wouldn't hurt, especially if you are so concerned. Good luck - Let us know how it goes! ~Lisa

Good Luck ~ I hope your appointment goes better than mine did ~ I also had Dr. Fealey..and actually I am supposed to be going back to see him for a folow-up this next month...but am I going - NOPE! I honestly believe that I am getting MUCH better treatment from my Internal medicine doctor. We talked about my appointment with Dr. Fealey and he too agrees that it isn't worth going back. Definitely make sure you ask ALL the questions you need answered. I asked them and got the look anf the repsonses that I was stupid for asking. So don't let them make you feel like that. If you found info somewhere you want more answers about, ask...don't let them make you feel like you don't know what you are talking about. They did diagnose me with POTS, so I am not sure how they will be with you as you are trying to get the diagnosis. I was shipped to them by ambulance from my local hospital...they had to deal with me Good luck...let us know who you are seeing! ~lisa

The U of MN - What a WASTE OF TIME!!!!! I actually thought I would get some answers and all I got was the same crap I have been hearing.... For my rt arm, he said go to a pain clinic. For my left, he wants to do an EMG, but no matter what the results, he would never do surgery given what happened to the rt one. My head/neck/shoulder...he is also going to write a letter to my insurance to see if he can get the Botox injections approved...after 3 denials already I don't have much hope. He is telling me that he thinks that they are migraines...which 3 other docs have told me they are not. He recommended some drug but we dismissed it when he said that it causes birth defects during conception...not that I am planning on having a child any day soon, but that is the LAST thing I ever want in my system especially when it is KNOWN to cause problems. The POTS...well, he basically said that we are on track. I told him about not being able to eat and he said that if it is due to the meds, that HOPEFULLY over time that will go away! OVER TIME?!?!? By that time I will weigh only 2 lbs!!!! SO...what do I do? He told me to go back to Mayo to see the neuro there for my POTS (which I wasn't planning on going back to since all I got to my questions were answers of someone who just thought I was a stupid person for asking...I don't need that kind of doc). I am so lost right now. Tomorrow I go to see my internal med doc to review what I learned today...I can't imagine what he is going to say. As of today I think that I am honestly depressed...It all feels totally hopeless...I should not be feeling this at 32 years old!!!! Sorry to be such a downer...I just don't know what to do anymore... ~Lisa

VERY true here - I just put all the ones that I have tried into one place and I literally had a target bag FULL! What a waste of money! I can't imagine the value of what I have! The Zofran alone without insurance (monthly supply - 60 pills) has a retail value of $1500!!!!! Isn't that crazy...at least those help though! This is another reason I am seeing this neuor tomorrow - the Midodrine finally works but my body can't handle the side effects - so which is worse, constant dizzy spells or not eatting? I have lost 15 lbs in the past 2 weeks! ~Lisa

Wow! You sounds JUST like me. My head pain though is from hitting my head about a year ago while cleaning and it STILL hasn't gone away. But as for the tingling and the facial numbness you hit it right on the head. Mine is just about CONSTANTLY on my forehead then down into my eyes, my checks and chin. My doc said that because it isn't completely on one side or another he has a harder time figuring what it could be from. If it was one-sided they would think Bell's Palsy. I am going to the U of MN tomorrow to talk about just this! I will let you know what he says! I am seeing him for a BUNCH of issues (RSD in my rt arm, also starting to happen in my left arm), my head (the occiptal nerve just can't settle down and causes pain in my neck/shoulder and back), and my POTS. I don't think that he can give me any advice on the Addison's Disease, but we will see. I hope that he can provide some answers and hopefully some relief. I think that he is going to try the new med Lyrica...I little nervous about that since it just came on the market here 2 weeks ago. Wish me luck! ~Lisa

I hope that I am allowed to post this... I also make the replacement chains since the metal ones are not so pretty I am actually just starting a business with these! I have to say that they are selling great so far! ~Lisa