mngirl

I was in the hospital Friday-Monday. They gave me 3 round of treatments. I got about a 6-month dosage in 3 days. I did get some major chest pain out of the deal...but on Monday when I got out, I actually felt good...no dizzy spells! I could even not take my medication to just eat! Tuesday was the BEST day I have had in 3 years. I didn't have ONE dizzy spell, I could eat, it was perfect. I thought that I had hit the jackpot! Then Wednesday morning I woke up nauseated...I took my meds...the dizzies were still okay. Then at lunch I had one dizzy spell. I thought, big deal, I can handle ONE spell. Then about a half hour later....boom, boom, boom, they just started hitting me. Then from that moment on, it was as if I hadn't done anything. Today I went in to talk with my Dr. He thinks we are on the right track, he just thinks that we need a more constant dose...so I will start to get weekly (smaller) treatments. Then we will see if this helps. If it does, LIFE WILL BE BEAUTIFUL!!!!! We still need to get the chest pain under control...it is so bad I am taking Nitro constantly...it's the only thing that helps it. He adjusted my Midodrine and Nadolol today (lowered it), to see if that would reduce the pain. If not, then he is going to set up a Barium swallow to determine if this is a espohogial spasm or if there is something else we should be worried about. I hate the thought of this. My neurologist wants to Botox my espoghus to calm it down. I am just afraid that that isn't going to be it. We'll see. I have until Thursday. If the med adjustment doesn't work, he is setting up the test and possibly the shots. Anyway...I just want to say, that I think that we are onto something...I just wish that it had longer lasting effects. I'll let you know what happens this next week and if the weekly treatments are any better. Good luck to you all! Lisa

I think that it has and has not helped. I don't have that constant lightheadedness feeling. I also am able to stand food without the help of the meds. But...right now I have a MAJOR headache that is not allowing me to do a THING!! I can barely keep my eyes open. And I feel incredibly warm. We are going to give it a few weeks and see what happens. It hasn't done anthing for the chest pain...if anything, I think it made it worse. It am on nitro all the time to get it to stop. That is the ONLY thing that helps that. My dr thinks that maybe it is a espoghogial spasm. I am not sure that it what it is...so we wait. If I am feeling like this in the morning, my doc is getting a call. Keep your fingers crossed that this helps...even a little. I will take even the little relief it provides. If anyone has any questions about it, let me know and I will see what I can answer. ~Lisa

Yes, and I do have it. I was diagnosis that BEFORE being diagnosed with POTS. Need any info? ~Lisa

I saw Dr Fealey...he was the one that diagnosed my POTS...He diagnosed it for me while I was in the hospital for another medical problem and then the POTS really hit, so they ambulanced me to Mayo. I saw his resident more than I saw him while in the hospital. But I did have a follow-up appointment with him about 6 weeks later. I honestly have to say that I haven't been back since. And this is why...We went into the appt with 3 pages of questions about POTS. When we tried to ask, what I felt were VERY valid questions, he made it seem like they were dumb things to be asking. He truly made me feel like I was ignorant, which I was about POTS. My meds still needed to be adjusted and he told me that I would have to live the way I was...things would work out. He recommends Pedialyte, not Gaterade...he says that Gatorade is just a bunch of sugar...you need the sodium and some other things in Pedialyte. He also prescribed me compression stockings that didn't help me enough either. He also told me to start exercising, even though I could barely stand up. It was like he thought I was faking not being able to stand. I left there knowing I wouldn't ever see him again. He sent me back to my home with the instructions to go to physical therapy for 6 weeks and then get back to living. I did go home and things were not getting any better...so I started seeing my Internal Medicine doctor who has been AWRSOME. Even though he didn't know much about POTS, he has put in TONS and I mean TONS of time researching all this. He has even gone so far as to call a dozen other doctors to see what we can do about treatment. We have adjusted my meds constantly but my body finds away around them...then we tweak it again. I sure hope that your experience will be much better...and maybe we just caught him on a bad day. I just think that the man is so smart that he can't come down to the patients level and be caring enough to make you feel and understand what this disease is all about. Let me know how your appointment goes. If you have a good experience, maybe I will give him a try again with a follow-up appointment. But I truly LOVE my current doc. Without him I would be in the loony bin. Good Luck! Lisa

I JUST posted about this. I am going to give it a try as long as my insurance approves it. I guess it is insanely expensive. My doc thinks that this can really help. He states that he thinks by hitting it with a large dose, we could fix it all. He found some research and a patient was completly cure with one weekly treatment...her problems were gone PERMANTLY! I will give ANYTHING a try at this point. Let me know if you are going to try it too! ~Lisa

Well, things just seem to be getting worse and my doc is trying to help me find ANYTHING to help. So, we are going to try an IVIG treatment. I am waiting for my insurance to approve it. It is a MAJORLY expensive for a small treatment (just 50mg evey six weeks)...my doc is going to give me a HUGE dose (600mg in 5 days). I guess it takes thousands of people to get just one dose and it takes about a year to produce that. My doc is hoping that this treatment helps set things back in place. My dizziness. lightheadedness and vision problems are getting worse. Just when you think you have them under control with medication, it starts getting worse. My doc thinks that my body is finding a way to fight through the medication...then it take more to fix it...we are at the highest doses I can take on a lot of my meds...so...maybe this will work. I will let you know. I was just wondering if anyone else has had a treatment like this and what the results were. I haven't posted in a long time and haven't had time to read much of the posts...I hope eveyone is doing okay. ~Lisa

My doc put me on an immunosuporessant a week and a half ago, and it seems to already have helped a little. The dizzies don't seem to be too bad all the time. But they are getting REALLY bad when I get warm. It is starting to get nice out, and we have been outside. And being outside I am getting warm from the sun. As soon as I start to feel warm, the dizziness and lightheadedness start and just get worse. To the point I feel like I am going to pass out. What is causing this? I don't remember this being so bad last summer. I think that this has all ben getting worse over the past year, so maybe that is it. Maybe partailly due to the meds? If it is just the POTS, can someone explain to me why this happens? TIA! Lisa

I asked him if there were any concerns about taking this and he said no, that this med isn't a strong as some others. But the stuff you read online really doesn't make it sound very good. The dizzies, the hot flashes, the vision problems, the eatting problems...they are all getting worse. If this works, this is supposed to help tame it down. If it does work, then my doc is going to put me on a stronger immunosuppressant. If it doesn't work, then the next step is he is going to put me in the hospital and take away all my meds and start all over to see what I really need to take....like hitting the reset button. He is afraid though that taking me off it, my body won't accept it once I need to go back on it. It is a little bit of a risk. But it would be a 2 week or longer hospital stay. Just what I don't need right now. He said that he may be recommending permanent total disability and taking me off of work. Work comp is being stupid too. They are likely going to deny a treatment that is the only one that has been working for me. If I dont have these treatments, I can't work. So, you would think that they would approve the treatment so I can continue to work without pain. He said that he talked with some other docs (neuros) about all this to see what their recommendation was to do. He said that he had a patient who can't walk very far or falls over....this one doc actually said put her in a wheelchair and have her learn to live with it! My doc wasn't satisfied with that answer. I think I scared my doc today....He came into the office and sat downI told him today that I was done, that I couldn't do this anymore. That I was going to flip out on him. He actually got up out of the chair and went to closed the door. I held it together though in order to discuss what to do with him. He said that he is grasping at straws and that I should know that he is just trying things at this point. I told him to try away since I can't live like this anymore. Something has to change. It is just going to be easier to get sick. With 2 boys that is going to be hard to stay clean and healthy. MY oldest has a cold right now...I guess I just need to continually make sure that I stay sanitized. Well...that is where I am at in all this. Hopefully this helps and doesn't cause other problems. Thanks for listening! ~Lisa

Unfortunately the vision problems were before I wallpapered...it is just getting worse as the days go on. I get to see my dr. tomorrow to see what he has heard from other docs. Hopefully, something. There has to be hope somewhere, right? I think that my counselor is just going to LOVE me this week. I think I am really going to need those relaxation techniques soon before I crack. I am truly trying to stay positive through all this, I am just REALLY scared that I will completely lose my sight. If I had one sense I REALLY didn't want to lose it would be that one. I couldn't see my boys grow up...that would be a killer. I'll let you know what m dr says tomorrow, or doesn't say. I am getting some trigger point injections too. Those have been awfully painful lately too. He says that it is REALLY tight. I guess we need to make sure that I do not go past that 6 week mark for my Botox injections. Amazing how those work! Something that at least works...can't give up that! Thanks for all the prayers....they are defintely needed, although I am sure that others are in a harder place right now. ~Lisa

After last week with my issues with the wallpapering and stuff, I was having issues with my vision. The blurriness would come and go. Over this past week, it is now permanently blurry and I have to MAJORLY concentrate to see anything...which then causes MAJOR headaches. I talked with my dr yesterday about it and he said that things are looking bad. A relaxed eye should comfortably see at an arms distance. I can't see anything up close or anything away from me either. We determined that my relaxed vision distance is about 40 ft which my dr says is really bad and tells him that my eyes are VERY messed up. He sated that going to an eye dr. is not going to do anything for me since no lens is going to be able to fix this. Basically I have to hope that this does not get any worse, if it does I won't have my vision any more. And now when I try to walk AT ALL I am having issues. Now after standing for 2-3 minutes, I start to sweat, get lightheaded, get dizzy and then almost pass out. Before this was only once in an outing if I were walking for 30 or more. Now it is ALL the time. We can't figure out what the deal is. We figure that I am heading for a bad period again and this is just the start. The issue is that after every bad period, everything stays a little worse. My dr said that he is going to make some more phone calls by Thurs to see if any drs out there can help with this vision issue and the others that are happening. I am very close to not being able to work anymore. If this vision stuff gets ANY worse, I'll be done. I just can't handle the strain. I am luckily that I am a good typer and can get by that way so far. I just can't be on the computer and straining y eyes from more than a few minutes...the headaches are awful too. I'll let you know if my dr comes up with anything...hopefully he has some good news for me on Thursday. Crossing my fingers! ~Lisa

It only took me 3 hrs to do, but I paid for it all day Sunday with being physically sick ALL DAY! If I got up to move even to go from one room to another, I started to sweat, then got lightheaded, then the nausea kicked in BIG TIME! It was awful. The bade part as well, I have had nerve issues in my right arm...well doing this only made it extremely painful. I was supposed to have a lidocaine infusion this past Monday, but we got 12 inches of snow overnight so the clinic called and cancelled my appt. I couldn't get an infusion until yesterday. My dr. also put me back on Lyrica to see if we could settle the pain with this new nerve med. I tried this back in Oct - I stopped eating for 3 weeks and then ended up in the hospital for 16 days. I took it for 2 nights (Tues and Wed) and I am alreaady having issues with eating. So, my dr. had me stop it already until Monday to see if I can get around the side effects at all. I am so afriad that I am not going to be able to handle this med. Back in Oct. it at least seemed like it was working even though I couldn't eat. Now I just can't handle the med. Which seems to be the case with a lot of stuff lately. I am afriad that my body is starting to fight everything or else it can't take it. Anyway...I just can't believe how my body reacted on Sunday. And then I have been exhausted all week. My dr. said that my body just can't do these things anymore. How sad is that? My work comp case at work is coming to a head too. They are stating that I am maximum medical improvement and are trying to have my restrictions set. That means that they could choose to accept and accomodate the restrictions or give me 90 days and let me go. If they do I have to find a new job, or aI can ask them to send me back to work. With my arm restrictions and all this POTS stuff, who is going to hire me? I can't type foe very long, can't lift, can't stand for any period of time or walk for very long. What in the heck am I supposed to take up as a career? I am going to apply for SSD. I am sure that at this stage of the game I will be rejected. But I think that if I lose my job I would qualify. I have this POTS stuff, Addison's and RSD or both my right and left arm as well as in my neck/head/shoulder. All of which cause me to be into the dr 3 times a week for some sort of treatment. Luckily that my dr. and I get along so well. At least he doesn't think I am crazy and he is trying to help me figure this all out and make sure that work and insurance companies pay for treatment and don't jerk me around. He is an awesome dr. I can't imagine ever losing him as my dr. Anyway...I am still feeling crappy...It just seems as if everything is slowly getting worse. ~Lisa

Well, I made it today with the visionj issues - it is not getting any better, it actually seems worse. I am afraid that I am going to have to stop driving so as to not put myself or anyone else in danger. Anyway...My Dr. took me off the Requip for last nights dose and today it didn't make any difference. So I was able to talk with my doc today...it was a tough talk to have... He said that he talked with a Neurologist at another clinic (one who is doing research on POTS) to get his feedback. I have seeen this doc before - last March when they were testing me for Addison's he came in and gave me a occipital nerve block (for a severe nerve pain issue)...I din't particulary care for him then either, but this seals my opinion on him... My doc asked what there was to do for a patient (he didn't tell him who I was, otherwise this doc would know what to say) that had dizziness issues, visions problems, eating issues, chest pain/pressure, fatigue, etc. - This neurologist told him that he was dealing with someone with a severe autonomic dysfunction. MY doc said, that was what I thought, what would you suggest as a treatment plan? Would you put them on Prednisone, Lamictal, Mifodrine, etc....basically rattled off a number of medications that I am on...This doc said "No way...I would never put them on any of that." My doc asked what he would do for that type of patient then...his answer: "I would try to teach them how to live with it, how to function with the issues, some counseling...and have them come back in 3 months and see how they are dealing with it" !!!!!!!!! Can you believe this? Although I shouldn't be too suprised, that is kinda the answer I got from the neurologist at Mayo (and why I haven't gone back to him since the recheck after I was diagnosed)... My doc couldn't believe it - this doc wouldn't try anything to make it better! I know that there is no cure, but come on, try something to help the patient! So....Here is the hard part of the conversation...we talked about the visions issues...my doc said that there is NOTHING he can so for that...an eye appt wouldn't do anything. He said that if they look into my eyes, things are going to look normal...they wouldn be able to test for the autonomic function of the eye properly - and then there isn't anything they would be able to do. That answers *****...Then we talked about all the problems as a whole. On MOnday he put me on Requip, he thought yesterday that it may be making the vision issues worse, so yesterday I din't take my dose - it didn't make today. So, we are going to up the dose and see if a larger dose may help. He is hoping that it will help with the vision, with the eating, with the dizzies. But he said that he honestly doesn't know what to do anymore. I was so close to tears, you could hear it in my voice, but I was able to hold it back...I told him that if this is the way that I have to live, especially with this vision issue, I won't make it very long. He said that we are back to the autoimmune suppressant medication try. For some reason my body is just making things more worse each day. I can't imagine what it is going to be like at the end of this year at this rate. He said that he wouldn't be looking at puting me on a deadl dose...but one that is going to have some repercussions to it. He thinks that knocking the autoimmune process down that it may settle all the symptoms down. I told him that I can't do this anymore...I am willing to try ANYTHING at this point. I am 32...I have to try to find SOMETHING that can allow me to live...I know that it will never be NORMAL, but at least liveable. So, we are giving the upped dose of Requip until Monday...if things have not changed, then FOR SURE we are going to try the autoimmune suppressants. My doc looked so defeated today. I felt it. Today the real realization of it never getting any better set in. I have to say that I am lucky I have a counseling appt tomorrow because I've had it. My husband and my 2 little boys are what gets me by...without them...I can't imagine. We found out yesterday that my husband is getting a promotion at work - with it comes a pay raise, we have yet to know how much...but this may allow me to apply for disability and not put our family in finanical distress. And with what he said today, it makes it more evident that I should start applying now. Maybe I can at least only work 1/2 time. If this gets worse, there is no way I am going to be able to work. It's hard to admit that...This is just NOT FAIR! I know that I am not dying and others have a lot more sucky life...I am just having a pity me moment...I'll stop now. ARGGHHH....I am just do frustrated. Thanks for listening...let's hope that one of these things work...or at least provide a little relief. ~Lisa

He had given me this for restless leg syndrome when I was in the hospital - it worked great - and it is also used for Parkinson's - and now we are going to try it to settle the dizzies that came back, the vision issues and the not being able to sleep. The hope is that it relaxes the system down enough to cause all these problems. We are going to try this for the next 3 days and then decide more on Thursday. At least this will take care of the restless leg when it hits. When I get it it is SO AWFUL. You can't control the shaking legs - I have to bouce them while sitting. It brings me to tears it is so bad. The vision problem just won't get any better. I am just waiting to wake up and not be able to see at all. I can't stand it when all I see is blur. I have had pretty decent vision up until the past few years. I have bifocals, but mainly for reading and for the computer - and now I am just having issues seeing anything. I hate it! The thing is...I had Requip in the hospital...I've lost days while in the hospital - and we are not sure if it was due to this med or not. The side effecets are syncope - which is what we are trying to settle down - it also can cause symptomatic hypotension and hallucinations - just what I need, eh? I just hope that it just works and I don't have these side effects - I am sure work would LOVE me to be hallucinating while working. I bet I could make some VERY interesting yellow page ads feeling that way. OKAY - Let's just hope this works. I am staying on the Zyprexa too - only 2.5 mg for now though. At 5 mg the sugar cracvings were just too much. I gained back a lot of the weight I lost due to the eating issue. I am not eating a lot now either but it is bad weight, due to all the sugar I have been taking in. Keep your fingers crossed! ~Lisa

He said that he needs to give it some thought and research this weekend. He said that he doesn't take it lightly to prescribe either of these meds. I told him that this past week and brought back my vision issues, but they are worse for some reason. I am getting to the point of blacking out. RIght now everything just totally blurred and I can make out a shape, no detail. I am so afraid that this is going to happen while driving. He said that this is another autonomic problem rearing its head. Add that to the dizzies, and not eating (and if I do it is only sweets and salts)...I am starting to build up a good list of things that are not fuctioning very well. I am not sure which Parkinson's med he was thinking about, I wish I would have asked and written it down. Things is is that he said that this tends to cause dizziness in patients. And he hesitated beccause he thinks that it my make my dizziness 100 worse, definitley not what I need at this point. I feel like all we are doing is treating the side effects and not the problem...I am not sure that is even possible. I did come across a study that I am going to inquire about. It is about Tests to Evaluate Primary Chronic Autonomic Failure. I am not sure if I fit into this anywhere, but I am going to have my doc look at it. I've got to try something. He backed off my prednisone (from 10mg twice a day to just 10MG in the a.m.) So far I think that I need to put it back to where it was. I think that is why the dizzies hav gotten worse. I feel completely wiped about at 6 p.m. too. I stopped the Zyprexa and started back on the Lunesta. We have decided that we need to find 3 sleeping meds and will work and rotate them every 3 days so my body doesn't have time to adjust to it and make it not work. My body LOVES to find ways to get emds not to work. It is doing such a good job that we are to the end of a lot of med lists - and guess what - insurance doesn't want to cover those meds! Go figure. I have to say that I am a little glad to be off the Zyprexa - I have been eatin (which was good), but eating sugar and salt - bad. I have gained about 10 of the 16lbs back, but it has all been to wating the crap - not good weight to be adding back. This is one reason we stopped it. Hopefully it stop the cravings for the sugar. So...there is life. We are going to talk on Monday to see which med I am going to go on. If the visions tuff continues I think that he is also thinking about another MRI since it has been a year since the last one. Just to make sure that there is nothing there. I was a little concerned when he said Parkinsons because I have relly developed the tremors lately too...hoping that was just due to the Zyprexa. I have been off that for a coupld of days now and the tremors are actually worse...withdrawl? It's not like I was taking a bunch of it 5 mg at night - then went down to 2.5 mg and now nothing. How long should it take to get out of your system? SO many questions, no answers....I'll let you know what he says on Monday. Thanks for listening... ~Lisa

He was supposed to come into my infusion to talk with me, but because he was out all last week he had a lot of appointments. So after my infusion I sat in the waiting room for 45 mintues. Then I was on the phone with DH and my doc came walking out and jestured at me to come back...then he stuck his tongue out at me, LOL...I told him that wasn't very nice to be doing to a patient, and his response "Well, look at the patient I am doing it to!" LOL, what a doc eh? I have to say that I am at least happy that we have that relationship...he won't BS me. So, we had a good 45 minute conversation about all that is going on. It was nice that he took that time and was in no rush to get me out of there. We listed out all the issues...the list just seems to get longer each time. The bad thing that seems to be happening is that in the past we would only ever have to deal with a few of the conditions at a time because the others would seem to be under control. Now it is starting to be all of them acting up. My arm is under control with the infusions. My head/neck is actually doing good with doing the Botox injections. My POTS - acting up - I am getting light-headed a lot more recently - almost passed out in the shower a few times. My Addison's - acting up - things just aren't healing well. Sleep - getting very little - the sleeping pills I was taking don't work anymore - that was the reason for the Zyrexa - we'll that is causing a bunch of side effects that are horrible. Not Eating - Before he thought that this was due to my meds - now he doesn't think that anymore - he thinks that this has become a whole issue on its own - an autonomic issue - unfortunately that means it is not going to get any better, only worse. If it does then we are going to have to look at alternative ways to fix it - none of which I want to do. Chest pain - He thinks it is pericardities (inflammed of the sac around the heart). This he says is hard to get rid of. And the bad thing is that I have tried the meds to try to reduce the inflammation and it doesn't want to work. The med that worked in the past - Vioxx and Celebrex - they can't prescribe anymore. So it hurts to breath - I can't do anything physical because it makes it worse. I can't even walk on my new treadmill yet! That *****. We are adjusting a bunch of meds this week and we are going to talk again on Thursday. Then we are going to start the autoimmune supressant meds. Really not what I want to do right now. There is a MAJOR flu outbreak around here. One school had over 50 cases the past few days - to the point they closed school to stop it from spreading. Yesterday duringmy infusion there was an older lady in there that I had to listen to her throwing up for over an hour! I was gagging I couldn't stand listening to it. They aren't sure if it was due to her chemo treatment or the flu (their bet). I had to go to the bathroom SO BAD, but she had been in there and they hadn't disinfected it. I didn't want to touch anything she had, that is all I need - the flu. That would certainly put me in the hospital at this point. I so hope my kids don't get it and bring it home. But today my vision started to go goofy. I was looking at my computer and then everything went completely blurry - I couldn't see anything. I was concerned that I wasn't going to be able to drive home. I am getting these blurry blips on my vision and then things get more blurry. I feel like I am losing my vision. I feel like if I go to bed tonight I won't be able to see in the morning. I had something like this happen this past summer, but then it went away...now it is back. I am having issues with distance even. Figuring depth is very hard. The med change shouldn't have taken effect yet, so that can't be it. I am a little concerned. I have another infusion on Thurs, but I am not sure that I can wait to talk to my doc until. I think that if this is like this tomorrow I am going to have to go in or at least call the office and see what I should do. SO, that's that...my doc thinks that all these issues are autonomic problems which are next to impossible to fix. It sounds like this is how life is going to be. How unfair (just taking a pity me moment...) ~Lisa