mngirl

Mine says: Addison's Needs Steriods Orthostatic Tachycardia Allergic Vicodin, E-mxc, Celebrex Medic Alert # I also have a Medic Alert bracelet. I will tell you that I recently tested their USB Health key and it is AWESOME! It is nice that I can carry my medical info with me anywhere (it has my meds, diagnosis, doc info, ins. info, etc. - you can even put x-rays on it if you can get them from your doc!). When you plug it into ANY computer a main summary screen comes up. So if an EMT would plug it into their computer, all my info is right there for them. I would check it out if you have a lot of health issues! (BTW - I didn't get anything for that plug, it was just a GREAT thing that some of you might not know about and that I was luckily enough to test for them). ~Lisa

I was told that it was due to the birth of my son. Funny thing though...in my last letter from my Dr. (the one where he said I also have anxiety and somatization), he stated that POTS is TOTALLY reverisble! Funny, I have yet to hear that from anyone! ~Lisa

I was told to not drink gatorade, but to drink Pedialyte. My dr. said that gatorade is not good enough for someone with POTS. And I cannot STAND it! ~Lisa

for the serum postural catecholamine test. It says that they were normal: Norepinephrine upright: 489 pg/mL Norepinephrine supine: 186 pg/mL Epinephrine upright: 21 pg/mL Epinephrine supine: 11 pg/mL Dopamine upright: <10 pg/mL Dopamine supine: <10 pg/mL I finally got some info on my TTT test too...I had a "hyperadrenergic response to head-up tile showing diastolic BP elevation & a remarkable increase in heart rate from 78 supine to 153 by 5 minutes. BP remained stable w/mild diastolic hypertension, heart rate stayed in the mid-150 range." Anyway...He also stated the following as my diagnosis': 1) POTS 2) Complex Regional Pain Syndrome (right arm) gotta love this one... 3) Secondary anxiety and somantization Has anyone else been diagnosed with #3. While looking it up online to see what it means, it sounds like he thinks I am a little crazy! All of the pain and stuff that I have had has all been medically explained. The POTS was the only thing that took FOREVER to diagnosis, and I did see TONS of docs because they all told me it was an inner ear thing, which I certainly knew it was not. My arm pain was due to an ulnar nerve compression (confirmed by my doc, which said it was the WORST she had EVER seen), my head pain is from me hitting my head a year ago, and then the Addison's Disease (confirmed by the tests). Just wondering if anyone else was given that as part of their diagnosis? ~Lisa

Jamie and Ernie - I haven't tried either of those medications. Thanks for the suggestions. I am just afraid to give up the Midodrine since it took so long to finally find something to stop the dizzies. The weight loss is actually a little nice since I gained so much weight when I started the prednisone (for my Addison's Disease). I HATE those drinks with a passion, but I figure I should probably give them a try again. Just hard to drink something else. The water and the gatorade is more than I can take! ~Lisa

I am on Midodrine and honestly it is working great! on 10 mg in the a.m. and 7.5 mg later in the day. If I go less then the dizzies come right back. More is also fine except later in the day then it causes issues when I go to bed. But here is my problem...I am literally not eatting. I can take 2 bites of something and that is it. I can't even have the food around me after that. I have lost 8 lbs in the past week and a half. I get SO hungry, but when I go to eat the 2 bites is it. I know that it is the Midodrine because when we have reduced the dosage the dizzies came back but then I was able to eat a little better. We have even tried breaking to doses up (We thought that maybe too much at one time was doing it), but that also caused the dizzies to come back. So, what I was wondering is if there is something else out there that would work like Midodrine but not cause the eatting problems. I have tried Adderall (not a very high dose - my dr thinks that maybe we need to try that again at a much higher dosage). Thanks! Lisa

I take Nadolol - 20 mg in the a.m. and 10 in the p.m. ~lisa

1. Name: Lisa 2. Age: 32 3. Dx: POTS, Addison's Disease, RSD 4. Age at dx.: 31 5. Where you live: Mankato, MN 6. Symptoms at worst: Dizziness, Feeling as if I am going to pass out, nausea, racing heart, grayed or no vision, fatigue, insomnia, sweating, extreme cold/hot, low BP, unable to eat 7. Symptoms at best: I didn't know there was a best time I am having a hard time finding that right now. 8. Medications/treatments, etc. that didn't work for you: Honestly I feel as if I have tired TONS of meds (you should see my medicine cabinet) - Celebrex (ended up in the ER) 9. Medications/treatments, etc., that do work for you: Nadolol, Midodrine, Lamictal, Prednisone, Methadone, Mobic, Ativan, Ambien, Zofran, Addrall, Protonix, Bextra

I was just 10 mg in the a.m. and 7.5 mg in the evening. However, it started to cause major stomach problems. I get SO hungry and then when I eat I can only take 3-4 bites and then I am to the point of feeling like I need to throw up (you know that feeling when you take that 'I am totally full' bite?) So, we thought that maybe it was the Midodrine, we have played with the dosing before but when I drop below 10 mg during the day, I can barely stay awake and the dizziness comes back very quickly. So Tues., I had a dr. appointment and we talked about lowering the dosage during the day back down to 7.5 mg because we added a med that he thinks may allow the dropping of the dosage. Well, today I did drop it to 7.5 mg and guess what came back?!?! Both the tiredness and the dizzies. I asked the dr. what happens if lowering the dosage is not a good idea, but having it at the 10 mg level doesn't allow me to eat - then what? He didn't know. This is the first time for a good long time that we have gotten the dizzy spells under control, so I hate to give it up, but I can't eat. We talked about trying the Adderall again, but at a much higher dose. I am not sure if that is a good idea or not. Anyway...I was just wondering if you take the Midodrine, do you take it more often and what is the dosage - do you have any side effects? Thanks much! Lisa

I am NOT fit...actually I cannot remember the last time I actually was able to do something physical (I bet it has been since summer of 2001!)...my resting heartrate at this time is anywhere from 40-52, sometimes in the 60s. And my BP goes all over the place. Today it was 100/68...up to 150/78! I can really tell when it is low. It gets lower at bedtime, I bet that I am in the mid 30s when I sleep. My husband says that he actually has to check my pulse to know that I am still breathing! ~Lisa

Today I went in to the dr today and had an ultrasound done on both sides of my neck to make sure that I do not have a blood clot causing the vision stuff. Afterwards I was feeling so awful (my neck, shoulder and back were KILLING me) I went and asked my dr to see me and inject those spots with something to reduce the pain. I LOVE my dr because he said no problem. Then his nurse was so nice and asked me if I wanted to wait in the waiting room or if I wanted to go lay down while I waited. So I asked if I could go lay down, and she put me in a room that was ice cold. So instead, she went and got the leather recliner and put it in a nice room, where I got to recline and close my eyes while I waited. My dr came in and felt so bad...we talked about what was going on. I think we are going to do a MRI of my neck next week - we never did one since I hit my head - only a MRI and CT scan of my head. My chiro thinks I may have the herniated disc in my neck and today that is EXACTLY what it felt like. So he injected my neck/shoulder and back with some pain killer stuff. Talk about painful shots - I barely made it through. Then I went back to work and it got worse. He must have hit a nerve because I couldn't move my head or arm and the pain went down my arm and it even hurt to take a breath. I sat there and cried...it took a bit but at least it settled down a bit. It actually still hurts tonight. I am going in for an infusion on Fri morning so we are going to talk some more. We also took away my evening dose of Nadolol in hopes my bloodpressure would go up. It has been pretty low lately. He said that if the dizzys don't get any worse, that he is going to put me on Ritalin, which he hopes may help. The past 2 nights I wasn't able to tell if not taking the Nadolol made any difference because I felt so awful and came home and went straight to bed. Well, tonight I was up and cleaning the house for company that is coming and man, I can tell I haven't taken it. I am now parked in the chair it is so bad. So, I don't think what he has planned is going to work! Oh...and my dr thinks that my vision problem is due to the autonomic problems caused by POTS! He thinks that it is causing the lens of my eye to spasm which causes the vision problem. If that is the case, then there is nothing they can do about it, but try to get the POT under better control - and that seems to be the problem, getting that under control. So....life ***** right now because I don;t know what to do anymore and I am in such pain, dizzy or nauseated ALL the time. I can't take this anymore...this just isn't how a person who is 32 should be living! ARRGGHHHH!!!!!!!!!! EMILY - Funny you should ask about MS...I was just talking to someone else about it and I was also commenting to her that it is really odd that all of a sudden I am seeing a bunch of stuff about MS - particularly about the visions stuff (and I haven't been searching it out either) - just so ODD! Everything I read about it makes it sound like it, but I know that when they were first trying to figure out what has going on they did a MRI to see if it was MS and I was told the MRI would tell them if it was or not. So, I think I am going to reask about it, just to bring it up again. About the Lidocaine infusions, I had an ulnar nerve decompression during which the surgeon cut another nerve to move the ulnar nerve. She didn't think that it was such a big deal given the nerve was a small one - Well, she was WRONG! I basically traded one pain for another. Right now I have a constant burn going up the back of my right arm, and even where the nerve used to be is painful. The bas thing is that trying to do anything physical with my arm causes MAJOR pain and it shouldn't. And guess what...I am starting to have the SAME problem in my OTHER arm! Great eh? Well, we tried what seems like ALL the medications to try to quiet the nerves down, nothing worked. My dr just started with one patient at that time giving them Lidocaine by IV. So, I thought I have nothing to lose so we gave it a go. My first infusion was 8 hours long! They gave me 800 mg of Lidocaine. About 2/3 or the way through the burning in my arm was GONE! I was able to take off my Lidocaine patch and everything was fine, it was amazing! Although if you pushed on the side of my arm it still hurt, but hey...it was a start. The only other bad thing was I started having reactions to the Lidocaine. The beta blockers make it stay in your system longer than normal and almost cause an overdose in your system. I started having chest pains and breathing problems during the treatment. If I wait too long between treatments I have them. If I keep my treatments at the right spacing, I don't have any reactions and it is great. The other problem I am having right now too is that my kidneys are having problems during the treatment too. It causes MAJOR pain, so much so they have to stop the infusion for a bit to let me recover a little. I have not had any problems with my insurance covering it. I have 2 treatments a week (now for about 4 hours each) and I have been going for about 3 months now. My dr thinks that it is going to be at least another 6 months to a year before my body starts to forget about the circuit of pain it is producing. My treatments cost anywhere from $300-$800 per treatment! So it is NOT cheap. There is a pill form, called Mexcilitine (sp?). We tried that last week in hopes that I could forget having to go into the clinic twice a week spending 8 hours a week there...but nope...the pills cause AWFUL stomach cramps, diarehhia, intense chest pain and nausea. So we had to stop that...I was only taking 50 mg of it too, which is NOTHING considering each Lidocaine infusion is 300 mg. It is the ONLY thing that is working for the pain in my arm, I am just concerned about the long term side effects of the Lidocaine - it can cause Kidney/Liver problems. I am already seeing kidney problems, I just don;t want to get to the point of needing new ones. I have Addison's Disease on top of all this so getting sick is a scary thing...It takes a long time to get over anything. So, if you need more info on the Lidocaine infusions, let me know. I know that they used to do them in the ICU at the hospital because of the seriousness of them. My clinic was just approved to do them at the clinic. But when I go, one nurse is dedicated to me the whole time (generally a cardiologist nurse), just in case something happens. They hook you up to a heart monitor, a thing that measures your oxygen levels, one for your blood pressure too. During treatments, my pulse has been dropping to the low 40s...they are very concerned and are afriad that it is going to head into the 20s and 30s. It is a little scary when you can feel it in your chest and then all of the alarms start going off! But...what can you do? Let me know if you need anymore info...I'll willing to tell you anything about the procedure! ~Lisa Anyway...I'll update when I can! ~Lisa

Laura - I saw the opthomologist today and she didn't see anything. I do however have an ultrasound tomorrow to make sure that I do not have a blood clot causing the problem. She also thinks that I need to see a cardiologist. I also sae my chiropractor this morning who said that my neck was incredibly awful today (it felt like someone was stabbing me through all the stretches he was doing). He asked if anyone ever examined me for a herniated disc in my neck. So I called my dr office right afterwards to ask if a neck MRI might be a next step. I certainly cannot live like this. I also have another Lidocaine infusion on Fri and will get to talk with my dr again then to see what he has to say. We are also going to talk about inserting a port so I do not have to be poked for 2 IVs a week for the next 6 months or so. Anyway...I hope that this gets better before it gets worse. I can't imagine not being able to see. ~Lisa

The past 4 weeks or so I can tell that my vision is getting worse. This weekend it was to the point that I actually thought I was going to lose my vision completely. The POTS was bad this weekend on top of it all too. I was running errands with my 6 year old and had to ask him to repeat our home phone number because if mommy fell to the floor he needed to call daddy at home. How awful is that that I had to even ask that of my 6 yr old?!? Anyway...I just got new glasses in April, they were great when I got them...but I would bet anything if I went back for an exam today, my prescription would be completely different it has changed so much. I told my dr about it today and he is VERY concerned. He said that if it were related to a headache it would go away once the headache did...but it is constant. Today I had MAJOR pain behind my right eye, so much so that during my Lidocaine infusion we had to shut off the lights for the whole treatment, the light was too painful. My dr is calling the opthomologist tomorrow to get me in asap. He said your vision cannot change that quickly unless there was something wrong. So he wants to confirm that there are no tumors or anything in my eye. Then they may also do another MRI to confirm that there are no tumors or anything else causing it. Has anyone else had any issues with their vision? I am totally scared about the whole thing. Up until the last year or so, my vision has basically been 20/20...now this. Today all I could see out of my right eye was blur. I am not sure that I can deal with anything else right now. Please keep your fingers crossed that it is nothing serious. Thanks. Lisa

I too have this chest pain. I was told that it was due to the tachycardia causing irritation of the lining between my heart and breastbone. The ONLY thing that has helped ease the pain is Mobic. I take it twice a day. The day I do not take it...the pain comes back. Anyway...just thought I would say that this is a "me too" issue. ~Lisa

I have been getting a lot of numbness/tingling all over my face. It is not on one side, and has been getting worse lately. I had it late last summer (no one could tell me why it was happening), it started to go away...then the past month or so it has come back and I still do not know why it is happening. Is this a symptoms of POTS? Last night I woke up and could not feel my forehead and my nose AT ALL. I keep ask why it is happening, but no one knows why or what specifically is causing it. It just really concerned me last night...not something I want to wake up not feeling again. ~Lisa

Thanks for all the welcomes! Ernie - I have been wearing compression hose since the diagnosis...I am not too sure whether or not they are actually helping though. Some days I think that they dom then other days not. I have not tried salt pills...I have just been trying to keep my salt intake up. Rita - I am seeing Dr. Fealey. Morgan - No, I do not have the hyperpigmentation. My cortisol levels have been very low and my recover from anything is ungodly slow. My body just can't seem to fix itself. Are you being tested for Addison's? Well...Tomorrow (monday), I am headed on a jet plane to Birmingham, AL...I am a little nervous about the flying stuff since this will be the first time traveling while feeling this awful. I am traveling with my boss, who I know is dreading traveling with me as well LOL...I am hoping that this little trip will be uneventful. On Friday, we upped my Midodrine to 7.5 mg twice a day. I think that it is helping a little bit, but not enough to be able to function all day without having a nasty episode. My doc thinks that we were fooling around with too little doses of it. It makes me awfully tired too. So...I am signing off until I get back on Wednesday! Please keep your fingers crossed that nothing happens.... ~Lisa

I was recently diagnosed with POTS (in March) after a 12 day hospital stay. I was actually admitted to our local hospital for a final test for Addison's Disease and unfortunately, that test sent me into an Addison's crisis (you guessed it...the results were +)...After 8 days they transferred me to the Mayo Clinic in Rochester, MN. Anyway...Things are going horribly at this point. Mayo sent me home with some beta blockers and told me to learn to live with the POTS! I have been working with my Internal Medicine doc here to try to have a normal life. The only thing is that I am having other problems ON TOP of the POTS which are making all this awful. I also have: * An occiptal nerve problem - I hit my head back in July '04 and am still having issues. * I had an ulnar nerve transposition in April '04 - the dr cut a nerve to move the ulnar nerve. I traded one pain for another, and this one they can't fix surgically. So I am having Lidocaine infusions done twice a week to tamed down the pain. * I was first diagnosed with Addison's in August '04. I questioned the results this past February - that is why we did the final test in March (it was a Metryapone test - which I ended up having an Addison's crisis from. Funny thing is, my dr wanted me to do the test at home, but I demanded that it be done in a hospital - I got lucky that I was there!) I started having MAJOR dizzy spells in Feb '03. I was having 15-20 spells where I was about falling down. I doctored for a year, everyone said it was an inner ear thing, but all those tests came back neg. So I stopped doctoring. Then when I got my head, I started seeing an internal med doc...he diagnosed me with the Addison's. We had the dizzy spells under enough control that I could live... Then I requested a definitive test for the Addison's. Half of the tests I had were +, the other -...so I asked for one last test...the endo decided on the metryapone test. That was AWFUL...45 min after taking the 10 almond size pills it was like I was throwing up gasoline. That just threw everything into a MAJOR tailspin. While in the hospital I couldn't walk alone because the dizzy spells were so bad. They finally started watching my heartrate and blood pressure and realized that just sitting my pulse was in the 90s and when I stood would go into the 140s-150s. So they shipped me off to Mayo...they did the tilt table test and that came back + for a POTS diagnosis. So, they put me on Nadolol, which has helped with the racing heartrate when going from sitting to standing. But I was still having issues with being up more than 3-5 minutes everything would come back...dizzy, lightheaded, sweaty, racing heart, etc.... I have been doctoring with my internal med doc since it makes more sense than going to Rochester practically everyday at this point. About 3 weeks ago, I started taking Midodrine. The day after starting it - life was GREAT! not a dizzy spell for almost 2 weeks...then WHAM...The spells came back WAY WORSE. That brings us to about today. This morning I was driving when I started to get this weird feeling...my vision started to blur...then the tunneling...I was able to pull off the road...then black...It was only for about 5 secs or so by my guess...but how scary is that!!! Today I saw my internal med doc while at my infusion and we are now going to up the Midodrine dose...keep the Nadolol the same and trying some Remeron. He thinks that there just isn't enough blood getting to my head...so we are trying this and if it doesn't work, then he says he will says that all this dizzy stuff isn't due to a blood pressure prob. My internal med doc thinks that the Midodrine started to work and then my body decided to start to fight it, for whatever reason, making it worse. So we are trying a higher dose with the hopes it stays helping. I am so at a loss at this point...I think my internal med doc is too. It was so bad last week that they almost hospitalized me. I luckily avoided that but, man... I didn't feel like Mayo answered my questions well enough. They basically said....here is your diagnosis...we don't know the best way to treat it...you just need to figure out a way to live with it...come back in 6 months! Anyway...that is my story...life ***** right now...just not a way to live at age 32, with 2 little boys...I feel like I have tried everything and NOTHING is helping. Anyone have any suggestions that I should be looking into? ~Lisa