Chrissy

I just had to share...After checking the mail today, I had a mild heart attack. There was a letter from the Social Security Department. Now keep in mind the last letter I received from them sent me into an emotional breakdown and my family put me under a suicide watch at home. So the first words out of my dad's mouth today were, "Okay, everyone sit down!". I began reading the letter first as my mom said from the other room, "Well it must not be good news, she's not jumping up and down screaming!" But in reality two bold words at the top of the page caught my eye...FULLY FAVORABLE! I couldn't even finish reading it. In fact I couldn't breathe! My heart pounding, my head spinning, someone pinch me! I have been fighting for SSI benefits since March of 2006 (an entire year after I received news that I had a rapidly progressive case of POTS/Dysautonomia that appeared to go from healthy to disabled in less than 6 months, but in reality the POTS was slowing taking over since birth I just didn't notice.) Nearly a decade of fighting for benefits, recognition, and racking up medical bills (many medical tests were just to prove to the court I was still in pursuit of a cure/still sick). Nearly a decade of stress on myself and my family. Stress that brought financial hardship and sickness to my parents, who are my main support physically, emotionally, and financially. As my dad took over reading the findings. I not only was found disabled, but they acknowledged the findings go back to a disability upon application in March 2006. He went on to say there was no reason why I was denied all these years, almost to the point of bashing the judge I'd been dealing with prior to my case landing in a new judges hands. So now a sense of relief. My case is in the hands of the financial department to work out my monthly check, paying off the medical bills, and determining my back pay. Old rules state unlimited back pay as long as I never stop appealing, new rules have a 4 year cap. So we'll see what they figure out. My legal team plans to fight for every penny I deserve. But at least I got approved. Yay! For anyone on here fighting for their benefits, never give up even when you feel you can't take the stress anymore. There is a light at the end of the fight.

Yeah, I keep telling my mom. It doesn't help the water I drink goes right through me. I'm not even sure it's stopping to be absorbed. Lol. Yeah, I'm still really bad off days later. Migraines like never before which is saying something because the migraines were my first serious symptom 10 years ago. Slurring words, off balance, dizzy, short of breath, and rapid breathing. I've been dealing with POTS for 10 years and I don't remember ever feeling like this. My cardio and Dr. Grubb both say I'm a ticking time bomb just waiting for the next major symptom to be triggered. I sure hope this isn't it. I don't want to feel like this for any length of time.

Hi guys. So I've been doing really good with the physical therapy 3 days a week they have me doing to recondition and help my joint hypermobility. Then Friday something went wrong, all of a sudden they are freaking out because my oxygen is only 93 and they can't get it to come back up. Needless to say they had me laying down until they could raise it a little, then they sent me home. Well my mom said my lips still looked blue and had me go home and do a nebulizer to see if it was my Asthma acting up. I did and then slept the rest of the day. I was dying a thirst and chugging water as much as possible. Still dry and my lips were cracked. My O2 was back up to 97, but I still couldn't stay awake, was slurring my words, freezing, and a little delirious. I ate something which was hard with no energy and drank a coke. My bp was low, but not scary low. My heart rate was low 60s to mid 70s. Finally at 10 pm my mom suggested going to the ER to get fluids, because despite chugging water I was still dry. We get there and I'm wrapped in a blanket, walking but barely alert. A nurse suggested putting me on an EKG and someone else said, no that's not necessary. They took my b/p once then had me hooked to a pulse/ox moniter and left. The doctor said she remembered me from when I was there well over a year ago, barely looked at me and said I'm sure it is just a virus but lets run some labs and do a chest xray. They drew the labs and then hooked me to an IV for fluids (which I sucked dry in record time). The doctor comes back a few hours later and says the labs look fine, potassium is a little low but not enough to cause symptoms. In the meantime, I'm coughing up a lung, struggling to breathe, grabbing my left chest, metallic taste, and the staff is irritated that my mom took them from their conversation about the new IPhone coming out to come check on me. So the doctor says well let's go ahead and order that chest xray and go from there. When my mom asked if I should get another bag of fluids the doctor said no her labs were fine why would she need more fluids. My mouth is dry, my lips are still cracked, and I'm unable to stay awake. Hummm... So they do the chest xray and it looked cloudy to my mom, but the doctor said it was unremarkable. They were gonna discharge me to go home and rest. My mom says, "Okay, we'll just contact her cardiologist on Monday." and suddenly the doctor is like, "Cardiologist? She has a heart condition? I reviewed her list of conditions, but I must have missed the heart condition. Oh, asthma too." Suddenly they are doing a breathing treatment and running an EKG. They discharged me with weakness/fatigue, which is better than panic attack, but I still left feeling worse than when I went there. If it is an early infection, why not give me a prescription? That was Friday night and I'm still feeling horrible and struggling to stay hydrated despite drinking all the time. All I do is drink, sleep, and pee. If pots patients have 80% blood volume than is it possible to have dehydration symptoms, but your electrolytes be normal? Please help. I can use any suggestions. I'm tired of finally feeling good and making progress just to be knocked on my butt again. I know that is how it goes with pots, but I spend more time on my butt than having good days. Thank you, Chrissy

Hi Group! It has been quite awhile since I have been here! Things have really gotten much worse for me in the POTS / Dysautonomia world! My sensory overload issues have gotten so bad that I have become practically home bound! It is very crippling! Especially a sudden unexpected noise of any kind will immediately set me off into what looks like a severe autistic episode! It takes quite awhile for it to pass and then days to get back to what would be considered normal for me. I have also lost us of my legs on more than one occasion. Out of nowhere, I suddenly cannot stand up. It is very scary! I have been on the waiting list to go to Toledo, Ohio to see Dr. Blair Grubb for 14 months. I have finally made it to the top of the list! Hopefully I can finally get some much needed answers to some of my questions and concerns. At least I will be talking to someone who knows what I am dealing with. Can anyone who has seen Dr. Grubb reply and let me know what to expect on my first visit? We will be traveling from Lafayette, LA. I know I have heard of people flying from other parts of the world to see him. Certainly we do not travel that far and especially with a 9 year history of symptoms to have a one day appointment. What types of tests does he order? Any information regarding your visits and how often do you have follow ups will be greatly appreciated! Also does he order labs and tests to be done from home? Also anyone dealing with the sensory overload issues would be great to hear your experiences and coping mechanisms! I am so happy to know that I can come here and get answers from people who understand what we deal with. Thank you very much for your time! Chrissy

As the weather dropped to a wind chill of 11 my "asthma" started acting up. My chest got tight and I struggled to get a decent breath for days. I tried the nebulizer, rest, fluids, and nothing helped. Any suggestions? I also get a sharp pain in my lower lungs and icy freeze with every attempt to inhale during the episodes. The ER is useless and I am now back to having to meet a high deductible so any suggestions is greatly appreciated. Thanks. Chrissy

I first developed seizures after my pituitary surgery in 2009. It started after months of insomnia and was a slow progression. It started with a facial tic, then turned into a full body rocking and uncontrolled moving of one or both arms. Then I began losing concenseness with or without movements, I'd have gagging, choking, and uncontrolled tearing up. Now the episodes present more like an autism spell. My eyes roll back into my head, I ring my hands together, play with a button on my shirt, can't make eye contact, mumble or speak repetatively in a childish fashion, spinning in circles or wandering around the room. I still have the uncontrolled movements and seizures too. One night I tried going out to eat for a special event with my family and had a really bad episode. All of a sudden my legs are moving up and down, my face is twitching, and my speech becomes rapid and labored. We took my heart rate and it was pushing 180 bpm and my movements are increasingly rapid. We got the check and went home to see if it would pass. We ended up in the ER after an hour of it not going away. I could hardly breath my heart was going so fast and I couldn't sit still or stop moving. The ER drug tested me for everything under the sun and then put a tranquilizer in my IV, but by that time the episode had cycled and I was in and out of concenseness barely aware of what was going on. The discharged me with panic attacks, then 2 weeks later called in a panic because they hadn't noticed my potassium was off the charts to low. They wanted me to go have my potassium tested to make sure I didn't slip into a coma or something from low potassium. I've seen several ER's, doctors, and seizure centers about these episodes. I've been told everything from sleep depervation and it will pass once I got quality sleep, to 8 years of unsuccessfully treated migraines fried my brain, they can't fix the damage but may be able to stop it from progressing any further. I've been told it is linked to the hormone imbalance from the Cushings, to sensory overload from my dysautonomia mimicking autism. I saw several psychologists to make sure I'm not having psudoseizures, but they said from a psych perspective I'm perfectly healthy and approaching my symptoms very well. In fact one doctor said she didn't even know why I was referred to a psychologist, I was too happy and positive about life and I already had a good coping system in place. My doctors admittedly have no clue and tell me to avoid triggers. They tried seizure meds, but none of them helped. Now with the hyperglycemia results I got yesterday, they think that may be a contributing factor.

Hi everyone. After 8 1/2 years of progression with Dysautonomia and POTS my case has been classified complicated by every doctor I've seen since 2009. This has led to doctor's dropping the ball in my treatment, referrals to new doctors for new symptoms being turned down and/or ignored, and my medical team becoming concerned about further testing, unnecessary new doctors, new meds, and pretty much making any further moves toward recovery. My symptoms tend to escalate or new symptoms arise the more doctors try to fix the current symptoms. So it was decided that I should go to a research hospital or go see Dr. Grubb. My name will come up on the 1 year waiting list to see Dr. Grubb sometime in early 2014. I was wondering how long I can expect to be there and generally what to expect. Part of the complexity of my case is unresolved Cushings disease, autoimmune/hypermobile joints (suspected Lupus, but my doctor couldn't get the referral to a rheumatologist to go through), sensory overload causing seizures, and my cardio symptoms swinging from one extreme to another and the meds not working. There is a unexplained pressure at the base of my skull that no one has been able to figure out. Then this morning my cardiologist called with the results of a 4 hour glucose test and said I was hypoglycemic and need to eat a protein bar every hour and carry glucose tablets. I feel like I'm in medical limbo. I'm confident that Dr. Grubb will be able to get my treatment back on track. I was just wondering what to expect when I go. Is it going to be a quick up and back trip or can I expect to be there awhile to have tests run? Thanks for any input. Chrissy

Thanks for the replies. I have had numerous MRI's over the years, they all come back normal. And when I get out of the pool its not a pass out kinda situation, just a wobbley leg thing. But since the first colapse I take it real slow. First of all I'm usually only walking around in the pool anyways and always exit on the stairs so its just like walking out of the pool. But I end up sitting on the side of the pool, legs completely out of the water, for awhile before attempting to stand up. When I do stand up I have my mom or dad brace me to help me to a chair. Now we take the wheelchair to the pool, better safe than sorry. I honestly think it has more to do with joint instability than cardio problems. My joints are deteriating at a rapid pace (double spained ankles, knees buckling, slipping vertebres in my back, etc). I don't know, just taking things one day and one episode at a time.

I developed a new symptom while on vacation last month. After getting out of the swimming pool at three separate hotels on numerous occassions I would just colapse. My legs would just give out under me. I am fine while I am in the water, but upon getting out its like instant gravity, my legs become numb and then they just wont hold me. And it doesn't matter if I'm in the water 5 minutes or an hour, swimming or just standing nearby in case my nieces need help swimming, I have the same result upon getting out. I have been in many pools in the 8 years since getting sick and never had this result until last month. I also found that while in the pool last month I felt extra bouyant, like just standing still was difficult I kept being pushed upwards. I thought maybe it was a salt water pool or something, but the rest of the family wasn't have the same problem. So in two weeks my brother wants to take my nieces (5 and 3) to a waterpark and my mom and I will be the only other adults there. My mom doesn't like spending too much time in the pool, would rather just be the picture taker. But with this new symptom, I won't be much help with taking the girls on the rides. We already decided no slides, but they have a lazy river and other mellow raft rides. Its the getting off that will be an issue. Does anyone else have this problem? Maybe there is a trick to keep this symptom from occurring? The doctors haven't had much ideas on this matter when I mentioned it happening. I just thought I'd put it out there to see if anyone else is experiencing this or if they have any tricks. Thanks.

Hi, thanks for the replies. Katybug - I have had migraines since this all started in Dec. 2004 and have been unsuccessfully treated with more migraine prescriptions than I can remember. Nose sprays, oral drugs, iv meds at the ER, etc. I do find an ice pack at the base of my skull control the migraines and "seizure" activity temporarily. Otherwise I just wait it out. I've been to many Neuros over the years, but am currently blacklisted in the local area. They just don't know how to handle the complex case so they try to refer me out or politely tell me that come back would be a waste of my time. jrlehnardt - What is mcas? Sadly I'm pretty much on my own until I can get to the mayo clinic. All my doctors no matter the specialty are throwing up their hands, leaving all my meds as is, suggest for me to slow down any attempts at normal activities, and keep passing me back and forth to one another. They all claim once mayo figures out what is wrong with me then they will be happy to manage it, but with the huge mess it has become no one knows where to start. Hopefully I can get in this fall.

Hi. I was diagnosed with GERD in January 2006 in addition to gastroparesis. I've been on everything from prescription prilosec, ranitidine, both, and now a new one. The gastroparesis supposedly went away in 2009, but the acid reflux remains. I still never regained my appetite and constantly have to remind myself to eat, get nauseated often after eating, and sometimes just from the smell or thought of food. But the scopes came back normal and I just deal til it passed. But two months ago I began feeling the way I did before I got diagnosed with gastroparesis. Going all day not eating, cringing and nausea at the mention of food, chronic nausea after one bite of food, and misery after eating sometimes well into the next day. Then it got to the point that even water would make me miserable when it hit my stomach. I figured it would pass, but it didn't so I went to my gastro who did a scope. As usual everything was normal except inflammation of the esophagus and stomach. They did a biopsy that came back normal. They said it was acid reflux and I needed to get back on my ranitidine and pantoprazole. Which is funny because if they would look at my record I never got off it, in fact both doses were increased. Yet the symptoms continue to get worse. I'm currently on Ranitidine (zantac) 150mg twice a day and Pantoprazole 40mg in the am. Does anyone else have this problem? Does it fall into the same area as not responding to OTC pain/cold/allergy/flu meds? Maybe the fact they are prescription strength doesn't matter. Maybe I'll lose some weight (pending endocrine problems). I do manage to get one small meal in a day and try to make smart choices to get the best nutrients out of little food. My biggest concern is not getting enough fluid intake in especially with it being summer in Louisiana 92 degree averages. Thanks, I appreciate any suggestions. Chrissy

When I first got diagnosed with Dysautonomia I was told I had an unusually rapid progression (from no symptoms to 2 pages of symptoms in 3 months). I recently went from an occasional tic to full blown seizures/muscle twitches in less than a year. I'll find out the specifics of what's causing the seizures and if the muscle twitches are related or yet something else. And now I went from double severely sprained ankles to hypermobile joints (knees, wrists, shoulders, back, spine, and elbows) in a month and the pain, cracking, and popping keeps spreading. They are calling it connective tissue disorder and I have an appointment with a rheumatologist in November. I hope my body can hold out that long. Does anyone else feel their symptoms are speeding up instead of slowing down? Am I doing something to make me suseptable to rapid progression? I can't figure it out and none of the doctors are any help.

Yeah my wrist hurts when I hold a phone to my ear, hold a cup, open a bottle, stirring stuff, folding, lifting, and pretty much any use. Some days it just hurts all day, sometimes I can't open my hand out of a half fist (that has become the automatic position lately) without major pain in my fingers. And writing, especially signatures is nearly impossible. Plus I find that my signiture is getting more of a long, loopy line than anything readable and even before the "injury" I could sign 4 pages back to back at a doctors office and none of the signatures matched. Weird! It's good to know its not just me. Thanks

So I went to a sports doctor about my sprained ankles and he did an ultrasound and found that my right ankle is "trashed",one fiber left in the ligament on the outside of the ankle. The left has all its fibers, but is so stretched out its not much use. He said I could walk on it as long as I wore ankle braces and said my treatment options were surgery, plasma injections into my ligaments, or agressive physical therapy. Getting a second opinion, either way the only treatment he performs is the plasma injections that the insurance doesn't pay for. So that was 3 weeks ago, then came the pain in my calves which I assume is due to the ankle damage. Then last wednesday I "sprained" my wrist doing laundry. It started with pain in the veins on the top of my hand, feeling like my fingers were broken, major tingling in my wrist, and feeling like my forearm will snap. I just alternate bracing it and keeping any additional pressure off it until I see a doctor. Then Monday afternoon I developed muscle pain in both thighs, no real explanation, which quickly progressed into my knees buckling and feeling like my bones will snap. I'm sure they wont but it doesn't make it any easier to walk. The pain is so bad and I just feel like the support isn't there. I have an appointment with an orthopedist July 26th, but I'm nervous about the appointment. They always ask how it was injured and apparently just walking around doesn't sprain an ankle, you have to twist it stepping off a curb or something. And I got major dirty looks when I went to the last appointment with two sprained ankles, this time I'm walking in with two sprained ankles, an injured wrist, and issues in both of my thighs. Talk about not being taken seriously. And what do I do until then? Stay off it? Keep moving so I don't get muscle atrophy? I have a feeling that my wheelchair will soon move from "as needed" to a permanent part of my life. Then you factor in the rapid progression of the movement disorder/seizures (still waiting on the official diagnosis, every doctor is calling it something different) since September 2010. I'm scared they are missing something, but not sure I want to know what. Is it weird that so much is going wrong at once? I've always had rapid progression of symptoms, but not this rapid and not all in one area. Does anyone else have similar symptoms? I did look at the symptoms of EDS and I'm not double jointed or have loose skin. Sometimes my skin is sparkly and/or thin with enlarged veins, but the sports guy said if I had EDS I would have had broken bones or sprains as a kid. And if it was lupus or another connective tissue disorder they would have caught it in blood work by now. My wellness doctor thinks its connective tissue weakness, but his solution is exercise which I was doing until the pain became bad. Any help or input would be greatly appreciative cause the doctors aren't much help right now, they just make my head spin. Thanks

I started with more of a tic (head jerking and a sniff sniff) in September 2010 and it rapidly progressed since. My worst episode lasted 45 minutes with 2 minute breaks throughout. Managed to get some video during that episode. I'm fully alert through the whole event and can talk, but very slowly. I find they happen when I'm in crowded noisy environments, during insomnia periods, or anywhere with a lot of stimulation. I get major head tingling, but not full convulsions, during physical exams at doctor offices. I told one doctor how every night when I first lay down to sleep my eyes move very rapidly and I get very dizzy then I start to move uncontrollably for about 5 minutes. He did a reverse orthostatic and said the blood racing back to my brain maybe whats causing the nightime episodes. I have an appointment at an epilepsy center in September so maybe they will have some answers.