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Everything posted by YolaInBlue

  1. I had an X-ray, ECHO, V scan for pulmonary embolism, blood test for allergies, breathing test for lung function. My lungs function at 56%, way too low. I am on antibiotic now (for possible infection), asthma inhaler, and motrin twice a day, which helps bring the inflamation down. Allergy meds didn't make a difference. I am better on azithromycin, but almost finished with it after 2 weeks. My GP is just trying meds but has no idea what is going on. She said, if it doesn't go away after antibiotic treatment, I need to have bronchoscopy done. At this point I don't think I can avoid it. My Lyme test was indeterminate, but can breathing problems be a symptom of Lyme?
  2. All the best for the surgery and appointments. It's great you found a dental surgeon that is aware of your condition and can manage your care. I need dental work badly, but keep postponing it. My dysautonomia started 2 days after a dental surgery, so I'm scared to go back to the dentist. Will have to, one day.
  3. The link worked for me. Thank you. I had a few biofeedback sessions, and I find it helpful sometimes for heart rate and temperature regulation. My biofeedback therapist himself had dysautonomia.
  4. My pupils do strange things at times, from getting huge during an episode, to pulsating, to dilating unevenly. It is often noticable at night, my left one dilates normally, my right one stays small. However, on at least 3 occasions, my right one dilated and stayed like that for several hours. I noticed, because my vision was off. I had a CT scan, MRI, and was told it's because of dysautonomia. I've seen a neuro-opthamologist, but my regular opthamologist was most helpful. He said no nerves are damaged in the eye, but my right pupil is also not exactly round. They were perfectly normal before dysautonomia, so I'm sure it is related to this condition.
  5. Thank you, Janet. I feel like I'm on the right track. I am so happy I finally found a doctor who has some knowledge about MCAS and dysautonomia, and is willing to test me, and try some treatments.
  6. I traveled to Minnesota from Florida. I had 3 appointments scheduled: GP, Dysautonomia Clinic and TTT. They were from 4 days to 3 weeks apart, with my tilt table being the last one (but they couldn't see me without ttt results in Dysautonomia Clinic anyway). I went to my first appointment with GP and then I went every morning to sign a stand by list for that day, for TTT, and later for Dysautonomia Clinic. If someone doesn't show up, they call people from a stand by list. You just have to be on the floor when the beeper goes off. Because of that, I spent most days entirely in the clinic. It was good to have my husband with me, he could go, get us something to eat and drink while I was waiting. I managed to do all the appointments, TTT and blood tests in 5 days and we left for home the day of my last appointment. We stayed at a nearby motel. Most of them have free shuttle service to the clinic.
  7. Thank you for the articles, Katie. Great find! I am waiting for blood test result for allergies, having a flare, suspected MCAS, and just diagnosed with asthma. I am also highly allergic to environmental/inhalant allergens. Some more tests to ask about.
  8. I was told that H1 and H2 blockers work better the longer you are on them. After one allergy doctor said I am too complicated for him to treat, I found a great allergy/immunology specialist. If anybody in Florida needs one, PM me for details. She did her residency in Boston clinic for mast cell disorders. I've seen her yesterday, she ordered tests for MCAS and said it is very likely I have it. I am still on Singular, Pepcid, and she encouraged me to try Allegra. I also got a prescription for an epi pen. My flares come in late summer/fall (it's my 3rd one). My lung function test actually came positive for asthma. After using an inhaler, my breathing is better today.
  9. I think it might be. It's interesting that after several hours in the hospital my breathing improves. But they switched me to a new room and it was just cleaned with bleach wipes, it made me nauseated, breathing got harder and my blood pressure dropped. Andy, do you take any meds for MCAS? Anything to improve breathing? Solu-medrol improved mine, but I got a reaction to it (tachycardia, rash, body temp. drop), I don't think I want to try it again. Maybe another steroid in a low dose. The nurse said I got a large dose. They put me on Singular and Pepcid for now.
  10. Thank you, looneymom. I just spoke with the doctor, and he says, mast cell disorder is a very possible cause. They will put me on singular and another mast cell blocker (so far they haven't decided), but won't do tryptase or any other tests, because, he said, they wouldn't know what to look for. I'm waiting for ECHO results and they did basic allergy panel done. I will be trying to get to a specialist asap. Hopefully getting closer to the end of this puzzle.
  11. I was doing quite well in the controlled environment of my home, for several months. Sure, I coludn't handle Florida heat in the summer, so shopping was done early mornings or evenings, but I got used to that, too. Only at night I had an hour or 2 feeling strange, some sinus swelling, but I kind of got used to that. No crazy episodes since January 2014. 5 weeks ago I got stomach pain, sore throat, painfull sinus, headaches, chest tightness, trouble drawing deep breaths. 2 weeks ago my doctor put me on antibiotic and the symptoms were getting better except chest thightness and pain, and inability to draw a full breath, unless I lean forward. My GP got concerned and ordered several tests for pulmonary embolizm (ruled out), ECHO for bulid up of bacteria in my heart (had a rheumatic fever as a teenager), some blood tests. She also suggested antiinflamatory drugs and presribed methylaprednisone, which I didn't take, afraid of my body's reaction to it. So going back to when my dysautonomia, started 2 years ago, my first episode of tachycardia, blood pressure jumping all over the place, dilated pupils, frequent urination, temperature dysregulation etc. happened after a dental surgery and massive dose of Advil my dentist prescribed. My episodes became a regular occurence and my dysautonomia and OI where horrible for several months before gradually improving. I also started having red spots on my face and chest during some episodes. Suspecting mast cells, I took Zyrtec and Zyntec last January, and that gave an episode 20 minutes later. I tried to contact dr. Afrin, but he wasn't taking new patients then, so it was left at that. I tried to get an appointment withh dr. Akin, but they said unless I have an official diagnosis, they won't take me. Now, back to today, typing while in the hospital bed waiting for my ECHO, tonight in ER they gave me a steroid and boom! 20 minutes later I got an episode. The familiar weird feeling, red spots all over my face, neck, and chest, tachycardia, big pupils, tremmors and chills, and peeing a bucket full. It took about an hour for my body to calm down, then it was my time to take a dose of antibiotic. I took it, haven't had a reaction previously I thought it was safe. 20 minutes later, weird feeling, heart rate 120 and red spots again. If that's not a proof, I don't know what is. Now I wonder if my breathing problems are also mast cell related. So, exhausted right now, I wanna cry. I only get some relief when I lean forward, so I have been trying to sleep like that and sit in some weird positions. They said if there is no infection of the heart they will most likely discharge me tomorrow. Please, can you advise me what specialst can diagnose me. I'll try to stay in the hospital and ask for addidtional tests. Can't go home like that, I am so lost now. How did you get diagnosed? Is dr.Afrin seeing patients in his new location? Any advice is greatly appreciated.
  12. I watched dr. Driscoll's video a year ago and immediatelly checked if I had moons. I had only one, on my left thumb. Now I have them on both thumbs and tiny ones on my index fingers. I used to have them on all of my fingers just few years ago. I also have vertical ridges on my thumbs now. My vitamin B12 is normal, thyroid is ok, too.
  13. Newoldpotsie, I had a prescription for IV saline from my dysautonomia doctor, and usually went to a walk in clinic. They don't want to do it there more than twice a week, but even that helped me a lot. My husband called several doctrors in our area, and that's how we found a clinic that agreed to do give me IV saline. A prescription for IV fluids also helped me when I had to go to ER during a flare. They just took me more seriously, I think, and I got IV right away. I have been gluten free for 2 years now. It hasn't been a magic remedy, but it helped me with nausea, bloating and dizziness after meals. I haven't had any GI issues for the last year. I am nauseated only when I have migraines, but I had them for many years. I have gained all my weight back within months after the initial flare and starting florinef. During each flare I lost a couple of pounds, but they always came back after I got better and ate regular meals. Eating small meals at regular intervals during the day seems to help me with lightheadness, too. I eat salty snacks from lunch time till dinner, when my blood pressure is usually at its lowest, and drink a cup of water with it. I couldn't tolerate salt tablets. There are grains you can eat being gluten free. I make my own baking mixes from rice flour, tapioca starch, quinoa and buckwheat flour. Yesterday I made my own gluten free tortillas. It's not as restrictive, as you might think. My daughter has GERD and I put her on a gluten free diet as well. It helped her a little, but not much, unfortunately. My best to you, get well!
  14. I was diagnosed with MVP with slight regurgitation when I was 19 (brought on by rheumatic fever). My MVP is mild and hasn't gotten any worse throughout the years (I'm 44 now). All doctors agree that it's not the cause of my dysautonomia. The only symptom I really have from it is getting tired easily. Even though I worked as a fitness instructor, I could never built endurance, and I was out of breath quickly while running or doing any aerobic activity. I never felt regurgitation, but I could hear it while having echocardiogram done. Salt intake doesn't seem to affect it. I've tried 2 beta blockers: bystolic and pindolol for tachycardia brought on by dysautonomia. I had to take midodrin and florinef with it to raise my blood pressure, which was always low. My tachycardia got better with time. I don't take a beta blocker now. I figured out that for me, if I try to push myself I only feel worse, with both, dysautonomia and MVP symptoms, so I just listen to my body and pace myself.
  15. I live in Florida. I was spending about an hour to 2 hours outside daily before I got sick. My vit.D level was fine, I had only low iron. Now it's a different story as I have heat intolerance. I try to spend 20 minutes a day in the sunlight, taking short walks in the morning. Some days it's too hot, even in the morning. During the summer I can do maybe an hour a week, total. I have to go shopping and take walks after sunset. Last time I checked, my vit. D level was low. I take a supplement, 1000 IU of vit. D and a multivitamin (also has some vit. D).
  16. Thanks, Sue. I will look for another neurologist soon, as I want other tests done. My dysautonomia got much better but, of course, I want it completely gone, like all of us here.
  17. I asked about it, but was told that my GAD65 antibodies are not high enough to be investigated as a cause. They left it at that and didn't recommend any other tests. I was a little dissapointed with my Mayo visit, to be honest.
  18. Angelloz, thank you. All the best to you, too! I've had migraines for many years, they run in my family, too. I am not sure exactly what " migraine phenomena" means. That's the diagnosis Mayo Autonomic Clinic put after my appointment, "orthostatic intolerance and possible migraine phenomena". I was told that preventing migraines might help my dysautonomia symptoms. During my visit they only did Tilt Table and testing for autoimmune antibodies, and concentrated on figuring out better medication. In particular, they wanted me off florinef and using midodrine more, adding a beta blocker to prevent migraines. My cardiologist didn't agree, because sometimes my blood pressure runs very low and my resting heart rates can go in the low 50's. Migraines can be horrible, but honestly, I don't feel my dysautonomia symptoms worsening during migraines.
  19. I intended to write when at least a year passes after my last episode, which was in December 2013, but maybe my story will give some people hope now. When I was first diagnosed I searched for recovery and improvement stories all the time. I'm 44 right now. During my teenage years, from 15 to about 17, I had 3 syncopal and several pre-syncopal episodes, while standing for prolonged periods of time. My mom wasn't too concerned about it, so I never discussed it with any doctor and never had a diagnosis. I just tried to avoid those situations and I don't even remember a moment when it just stopped happening. At 19 I had rheumatic fever and was diagnosed with mitral valve prolapse. Because of my awarness about it, I was obessed with living a healthy lifestyle, good diet, fruits and veggies from my own organic garden, daily exercise, etc. I had 2 normal pregnancies. No problems, until summer 2011. I was picking up my daughter from school on a hot day and got very dizzy and pre-syncopal while driving. I had several episodes that day and barely made it home, cold, pale and dizzy. My friend came over and took me to ER. They couldn't find anything except low blood pressure and HR was in the 40's. I had a follow up with cardiologist, but gave up after feeling completely normal from the next day on. In 2012, after a dental surgery and taking Advil 800mg I had a very scary episode of tachycardia, pre-syncope, frequent urination, trembling, dialeted pupils. I was 42 at the time. During the next month I developed almost all dysautonomia symptoms from the list. I started having episodes almost daily and sometimes they lasted for several hours. In between, I was thirsty, but couldn't hold on to fluids despite drinking bottles of water and pedialyte. I was dizzy after even the smallest meal. Unable to eat much I lost a lot of weight. Still, I felt bloated, cold all the time, dizzy. I could hardly get up and go to the bathroom. I had several doctor and ER visits, but no answers. My blood pressure and HR would vary from very low to very high for both. I would get presyncopal from taking a shower or lifting my hands up. After a while my kidneys started to hurt, too. My eyes were dry and painful, my mouth was so dry I could only eat moist food. I just want you to get a picture where I was at the time. After those ER visits I noticed that I felt much better on IV saline. But with no diagnosis I thought I was just going to die. Finally, I met a doctor in ER who admitted me to a hospital and said she was going to find out what's wrong. 10 days of all possible tests, a visit from a shrink, and they decided to take me of IV fluids and watch closely what happens. Within hours I started having symptoms and standing HR of 140, and heard the words dysautonomia and POTS for the first time. The next day I had a TT test, was given florinef and was told I will improve quickly. I was bedriden for the next 5 months, using wheelchair, very slowly getting more functional. I visited many doctors searching for the cause. I tried other meds and needed IV saline from time to time. I slowly strated to exercise (pushing with exercise sets me back). I was improving until summer 2013, when we were planning to go on vacation and I increased my exercise, trying to be more functional. I had another flare which put me in a hospital for a week. Slow improvement until December 2013, then a minor flare. I have been improving ever since. There are days when I don't have any symptoms at all, there are days with minor symptoms. I am a little symptomatic at night, on most nights, but able to fall asleep and just sleep through it. The symptoms that still linger are heat intolerance, reduced sweating, sometimes low blood pressure (corrected with midodrin when needed), getting tired much easier than before, sensitivity to chemicals and medications, increased allergies. I also have some nerve damage on the right side of my body and most likely some neuropathy. My right pupil doesn't dilate in the dark as much as the left one and I sweat less on the right side, have less feeling in my right hand (I burn myself a lot while cooking). I was told by Mayo clinic that my dysautonomia is secondary, but so far I haven't found the cause. I had several possible causes ruled out and many different theories from different doctors to work on. For now I am taking a break from doctors and focus on avoiding the triggers, and just listen to my body, rest when needed, exercise when I can. I make sure I'm hydrated. I have been able to lower florinef to 1/4 pill every other day. I go out when it's cooler. I can shop for an 2 hours without getting dizzy, I am able to do daily household chores. I was a fitness instructor and I am not able to return to my job, yet. But I improved a lot. I am able to walk 2 to 4 km a day and do some strength training on most days. Being on a gluten free diet also helped me. Right now I also take antiviral herbs for possible Lyme. I hope to report more good news in a few months.
  20. My doctor sugested it and filled in his part of the paperwork, my husband took it to dmv with my driver's licence. I didn't even have to go there myself, which was great, cause I was very sick at the time. They didn't ask any questions. It is great to have a placard and not walk the entire parking lot, in Florida heat I wouldn't be able to. I just started driving again, short distance and only in the morning when it's not hot. I couldn't for over a year. If I had to walk from the car to the store or doctor's office I would be too sick to drive back home by myself. If your doctor hesitates, you can tell him your daily struggles and how much it would help you to have it.
  21. I've been gluten free for almost 2 years, but it did nothing for my migraines. I know some of my triggers are: sugar, red wine, going out in the sun and strong scents, like perfumes and household chemicals. I'm trying to avoid those whenever possible, but still get migraines 4-5 times a month. I was also told in Mayo autonomic clinic that migraines can be the cause for some of my episodes, so definitely worth finding the triggers. I might try low histamine diet next.
  22. This symptom freaked me out. I noticed them about 6 months after the onset of dysautonomia, during episodes my right pupil sometimes dilates more then left one and stays that way for several hours. Also, in dark rooms it doesn't dilate as much as the left one (nerve damage?). I had a 2 head CAT scans, MRI and eye tests, consultation with neuro-opthamologist. In my case they say it's part of dysautonomia, too. But it's always good to check with a doctor and run some tests.
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