Dark days come and dark days go. (I had a bright day last week, well moment because I don't go a whole day without symptoms currently, but I'll take any good times!) 
I have not slept in two days now. (I slept for around 2 1/2 hours the past 48 hours straight.) I just realized I did not blog. So, here is a post. I'm so tired and I just finished round 2 of my IVIG dose. So I'm pretty worn down. (IVIG makes you sickly, flu like durning infusions. Luckily it dissipates within a few days drastically.) I don't know that's I've really given the story of what's all been going on with my health this year. Obviously it's drastically declined. So I'm going to recap it and try to keep it shortened. It is pretty confusing, even for me. The IVIG we started almost a year ago for my POTS. I hit the autoimmune criteria. So, since I was in a good partial remission and starting to have issues again, we did what we could to try to save my health. (So we started IVIG infusions as, they had started to publish that in certain POTS patients whom hit the criteria, where having drastic positive changes after being on IVIG. It takes 1 year to really tell.) It is rough and I got really sick back in November neurologically which wasn't a fun month. I had a miragine for over a month straight with three rounds of steroids/nerve blocks throughout my spine, head, and even some facial muscles/nerves. I was on many migraine medications and literally nothing worked. I had stroke high Blood pressure for that month as well. (Which POTS actually gives us low Blood pressure. So I normally run a low blood pressure. None the less, no one should be having stroke high blood pressures.) I had some seizures but the nurses never got the doctors. They happened fast, maybe a minute at the most. I looked like I had a stroke, (facial dropping/tremmors, and I couldn't talk. I had normal scans/testing and was in the hospital. Everyone knew something was clearly wrong but, no answers came. Finally we got to come home as the immediate danger of the thought to be "brain bleed" or Spinal fluid leak was not.. (Thankfully) They called it a chronic migraine cycle and thought he severe pain was elevation the blood pressure. I did get slowly back towards being on my feet but around Christmas time, I caught a 48hr stomach virus. This virus changed the course of disease for me. This is why I am so upset when people knowingly expose people to their germs. I am more susseptable to catching germies because I have to suppress my immune system so it can't attack my body so badly. This means we know my imunnesystem down permanetly. If I get a simple virus, my whole life can change negatively permanently. And this time it did... (I have neurological Gastroparesis, due to Dysautonomia/POTS.) So when my POTS gets bad it takes my GI function with it. We faught the flare but I just couldn't cut it and I ended up hospitalized with starvation and, I had to go back in Feburary and get a feeding tube placed once more. I started Jejunal feeding but, it didn't go well at first. I ended up hospitalized for a week with an out patient surgery. My feeds where too low, they could not let me leave without bare minimum nutrition. I've gotten better with my tummy but it's up and down. I do eat solids but in the same day I may reject simple water though my small intestine. It's super wonky and my body despises the nutrients it needs. I tend to eat unhealthy foods because they are easy to digest, so I don't feel icky. It's something I have to monitor and make sure I'm logging in my diet and manipulating with formula daily. I've started having what appears to be seizures. That was the end of April. I woke up in the middle of the night I only remember a few seconds of it. Which it really isn't normal to remember them. I also started a chronic migraine cycle. This time also accompanied by a "stroke face" and I even had speech disturbances, I had severe full body temmors come in with this and last. So we with the Neurologist, decided to stop the IVIG, because I have been so sick since starting it. (Now remember I only started it due to starting to get sickly again.) We had to pull it and see. That was the Only way to know. We stopped this treatment of IVIG. Then Neurologist ran an EEG and they mimicked with lights, the larger seizures that had just started, no doctors where on staff unfortunately, and the test was normal. They did not have cameras up as well. So they missed it but the tech saw. Witnessed the speech, stroke symptoms, tremmors, and what literally appears to be an epileptic seizure. (For 30minutes). I then couldn't walk or talk and my leg turned in and locked. They of course told me not to go to a hospital unless it didn't stop after an hour, because it looks just like an epileptic seizure, I ran the risk of being out in life support due to the severe sedation that likely would be administered to stop the seizure. In reality it wouldn't have worked because, they were not epileptic. (There isn't any other options it's pretty strict rules.) These symptoms stayed and lingered this time for good while off and on. We did IV steroids in large doses to break this "cycle" of sorts. It helped but only while I was on it. As the steroids wore off the symptoms came back with a vengeance. I did have some issues within my actual health care being taken care of but, they have worked it out and fixed this. I also got kicked off my Cromolyn Sodium which is one of the only Mast Cell Stabilizers that actually treat my Mast Cell Dysfunction. (Mast Cell is and Allergic reaction. Basically due to my nervous system malfunctioning, my body isn't regulating it's mast cells. We get rid of them with our ANS &, for unknown reasons, my body is is it holding onto them. We do know it's common in POTS patients.) So, these Mast cells dysfunctioning trigger my neurological state. (Which is frusterating because the Nervous System is the Culprit. So we end up going in a circle an have to try to break the vicious cycle.) So I've been back on my mast cell meds for about 2 weeks. My rashes are better (not gone) a.k.a what all my doctors, even a dermatologist, and allergist-immunologist said was acne. No, it's a clear mast cell rash. And it does look like acne. I also have flushing hot red skin in my cheeks and ears. It's comparable to a sunburn. It's gets red a physically hot. This is a mast cell sign*. But with time I was having severe neuropathy and pressure in my skull and base of neck that was/is horrendous for a long while. It was no longer a migraine anymore. I knew the pressure was not stress either. I im had to go down that road. Again, which was hard because I knew It wasn't that! I kept having a burning brain, and my right side of my spine was burning. I started getting worsening neurological symptoms. I went into full body tremmors. Very Parkinson's like, for example. Now POTS can make you tremmor, but this was much more severe. The right side of my body was effected clearly. I was put back on the IVIG after around 3months. This Is what improved it. I was talking better and my brain on fire calmed more. But I kept feeling off mentally. Then it became very clear my anti-seizure medication was causing me severe side effects over the time of a few weeks, mentally. It also quit working for the small fiber nerve pain in my skin tissue. Which is why I was prescribed it originally. I also got lucky to have my PCP do labwork of the levels of the Anti-seizure medication in my blood. As the "non-epileptic seizures" got worse. It came back toxic in my blood the same day I put it together, that my medicine was messing with me. Which still is weird because we never changed dosing up to that point and I wasn't on a maximum dose. All I can figure is I built an immunity to it and it stopped working. This does happen with nerve pain treatments, or my paralyzed GI tract wasn't absorbing properly and messing with the doses. I called and we tapered off of it. I felt better once we cut the dose in half. Then two weeks later Neuro took me off of it for obvious I reasons. Well not even 24hrs later my seizures and neurological state flipped out. It got very bad. Worse then ever. I failed pretty much every neurological clinical test. It was frightening. I sometimes can't even say one simple word. For instance the word one comes out, "oh-nnn-Ee" very stuttered and slow. And then I flip my words around or I saw words that maybe start similar and are so far from what I'm thinking. I'm not getting out what I'm thinking. It comes out differently. And I get really ticked off and frusterated. The biggest concern was no visible gag reflex. And this led doctor to going towards the diagnosis of ALS. Which my heart sank into the floor when I even heard mention of that. And it was highly suspected to be the issue, it wasn't just lightly mentioned. I did go and get a blessing immediately and it gave me peace but the fear would come in miserable waves and take me down. I finally got into neurologist a week later. He does not think that's it or has ever been. (He actually specializes in ALS, so that was a releif.) He reviewed videos of the worsening symptoms, & smaller seizures that have not gotten tested. So, at this point I truly didn't care about seizures. I only cared about what is wrong? And why was I being scared with the talk of having ALS by another doctor? We did MRIs of brain and CT scans. Neuro did say I most likely have a nasal spinal fluid leak. But they are extremely hard to show in a test. That being said... I actually get releif from letting the spinal fluid drain out of my nose. So fixing the leak would likely be more of a problem then a help. When I get a build up and migraine pressure, I let it leak out and it gives me almost full releif. It's not drainage it's pure salt water and it's like being drowned under water. It's a lot of fluid. It was extremely scary when it started because uh, my body was drowning in me. Lol. So when they fix those in patients like me, the fluid has no where to go and then high spinal fluid pressure issues come on. It's relatively safe. So leaving it alone is best for now. So that was good news. But obviously... What is wrong with me now is the big question!! I have a handful of autoimmune disease confirmed. Proof, but no rheumatologist will touch me or offer any help because, I quote, "my medical state is too complex." So I can't get a rheumatologist on board. Which is sadly common across POTS patients. Luckily prior to finding a POTS dx, I had an amazing well known, rheumatologist who was in his nineties! Study me... He did end up diagnosing me of Sjögren's Syndrome, and I had a definite dx of Lichen Planus. But he could never figure what the heck was wrong. Sure I had these other things, but something was wrong, and he worked very hard to try figuring it out for a few years. He sadly passed away and since that point, despite trying, I'm unable to find any rheumatologist in my state who wants to take me on and help me. They show me the door and say they can't. Honestly I'm thankful for their honesty. I ended up getting officially diagnosed with POTS/Dysautonomia and of course, we thought that this was the issue. It was considered rare then and doctors still don't know what POTS is, so it's hard to figure out. I do have POTS. I ended up loosing all my gastric motility of the stomach and partial of the small intestine just 3 short months after learning I had POTS. I was put on the sodium-fluid diet regimen and, I attempted cardio. (On my own which I didn't have the knowledge of how to recover from full body deconditioning.) and I did do some mast cell cocktail but about 6 months in I was told I was out of options. I nearly starved to death by the day out of my GI's negligence. But luckily TPN saved my life. It took one doctor whom I had never seen to listen to me, and I was shut down. Then we went through feeding through the small intestine and bypassing my stomach. I was very sick for years. Caught a flu in the middle of summer, and had a surgery and we joked happily I woke up a different person. I ate for the first time in years the next day after surgery and I didn't get ill. Now it was a loonngg process but I made full Remission of Gastroparesis for over a year and I also had my feeding tube removed successfully for 4 months. It would have been longer but, we were playing it safe. I was in partial remission of POTS/Dysautonomia for a year and a half until I started having some fevers and slight issues. It seemed very autoimmune. So we did Immuno supression therapy again and then that's when we started the IVIG a year ago. In Novemeber I had a clear flare up of something. Then never was the same after this, but I got better, had some bad days... Then it hit me worse like a ton of bricks in April! We stopped the IVIG thinking it could have been the issue. It was not. I only got worse without it. I started having eye issues, my vision worsened, I had a blind spot for days, and my eye was moving uncontrollably to the left. I walk funny but not super obvious. It was always right sided until last month, I moved to the left side after they put me back in the IVIG. My right side immediately was better, the spot u had gotten on my lower right side spine cleared up. I still have issues in this side though, I drag my right leg and I have issues. I don't have the whole heal toe thing down anymore. No matter how hard I try to. I tremmor so severely I can't always hold myself up and my balance has Diminished. Is up and down throughout the day each day. It's ibe bug Rollercoaster. This past few months has been honestly frightening. I did have high blood pressure for a while. (Stroke high). Then all the serious neurological symptoms. I started having low oxygen as well, and we hoped it was a fluke thing but, my Mom caught it again the other evening when I got dark circles under my eyes and purple lips. Neuro doesn't know what to do for this or how to help it. It makes no sense. If my respiratory response is effected by POTS it's merely because my heart beats to fast for my lungs to keep up properly but, it never effects anything. Not cool lungs... So what Neurology thinks* is happening is I have an autoimmune disease of shorts that's attacking my brain or nervous system. But what we do know is how incredibly hard to test for these things truly is! It's like a needle in a hay stack. He did not specify to one autoimmune condition or even mention which ones. But assured me not deadly. Which after the ALS scare and thinking I was dying literally. I don't mind that so much these days. Because that worry nearly gave me a heart attack. It could technically be mast cell issues causing really bad neurological issues, or both but, we don't know. What we know is in November I spent a time in the hospital with more then one neurologists in my room in the middle of the night. (We all know neurologists don't come in teams and start shoving needles into your spine for no reason in the middle of the night. I was that scary looking as in danger.) They gave me every treatment in the books for over month to break the migraine cycle and nothing worked. My BP remained elevated severely. I had started mini seizure-like episodes. What broke this was IVIG. Then again months later, we did IV steroids in high doses and this had a positive response. I also had fevers. We quit IVIG in April, I got worse. Way worse. I fever when symptomatic. The butterfly rash could be mast cell or autoimmunity. We restarted IVIG and it made such a difference I was shocked, but it didn't last? None the less, a positive response. All the immune therapies seem to only help. That's what we know. Neuro. Upped my IVIG as he didn't realize I was not staying steady and on week 3 I would dip. Then on week four I'd get my monthly dose. So it was causing my system hills and valleys instead of remaining level. Easy fix we do it more often. He didn't have any magical fixes or answers but, he thinks with treatment of mast cells and starting me on an out of the country mast cell stabilizer that we will get that more controlled. Then upping the IVIG hopefully will allow me to get out of this nasty flare up. He has high hopes of remission again but, it's gonna take time and critiquing of treatments. I am going to have specialty lab work done to test for markers in my blood of autoantibodies or antigens my immune system may be throwing and attacking my brain and/or nervous system. They of there, just can help us see if something is going on and pinpoint better. But testing is hard. He wants an EEG over many days time. So he isn't convinced there is nonepileptic seizures as they only tested the new ones. (The videos were useful.) I'm curious of my body and wonder what's going on. Is it POTS or is there something new wrong? Or is it I've had this going on over the years but I have so many health conditions it hasn't been obvious until now? Here's the fun part. We don't know. But I'm pretty good with where things sit right now as far as handling it all. And I know how tricky it is to pinpoint these things. I just feel incredibly blessed to have a future here on Earth. I've almost died, but being told you really might be dying from a scary degenerative neurological disease that is not even treatable, is a whole different thing! It's awful and I wouldn't wish it on anyone ever!my heart goes out to those who warrior through such things! You are incredibly brave and are in my thoughts and prayers! I have had to deal with a little post trauma from this but, it's getting better with time. It's been a little process. Hard to even explain honestly. I know about the sick life, that things can happen to our bodies and doctors can't alway fix it or honestly even know what to do for you. I've looked at doctors stare at me in their own fear and panick. I've had hospitalists beg me what to do because they did not know. I know how precious Healy is and how life is and that it can be taken that fast and unfortunately bad things do happen. But I know Heavenly Father loves us despite the hard times. He endures with us. He isn't punishing us, he is letting us learn and grow so we can return home to him one day. He won't always remove the burden but he can always make it lighter. There is a bigger reason for our earthly sufferings. This I do know with all my heart. We don't have all the answers now, things don't always make sense, but that's what faith is. Even if it's the small twig, it's faith. So I keep fighting and moving forwards in faith. Because we have too much life to live then to sit and worry about death. We have the plan of salvation. We know we agreed to come here and gain an earthly body so we could gain these experiences. We agreed to these hardships in the pre existing, and we know if we live righteously (not perfectly, righteously. I know sometimes we confuse the two. That's where Jesus comes into play because we are learning and growing and that typically means some mistakes along the way. So thanks to him we can repent and be forgiven.) We will be reunited to our Heavenly Father again. I know he lets the pain come because there is something better for us waiting for us on the other side of the veil, so lovely and so great that this pain in life is worth it. So good and amazing we agreed to come here to rath and endure these hard times. I'm not just talking physical ailments but any trial in this life. So when you have a hard day, or going through a rough time, just think about how lovely the reward is going to be one lovely day, when we return home and gain the full picture. I know it will all make perfect sense. If these past hardship has taught me anything, it's that life is one big suprise and we are just waiting to get to it. We are like anxious kids at Christmas waiting and counting down the days for Santa to come bringing presents. Sometimes it's painful to wait and we think we can't, but we always do make it to Christmas day! And it is as lovely as anticipated. Ironic? Isn't it? Nope. He hears you. I promise one day when the time is right, he will bring us home, we have nothing to rush, nothing to fear. Trust in him always and remember he is there. -Chelle
