Aimes

Thanks Arizona! A friend of mine was just diagnosed with Hashi so I've been doing a little reading on it. I always assumed since my tsh is always normal, I couldn't have it! I'll definitely bring it up to Dr. Goodman when I see him in April!

I've had these same issues! Mine also started after my gallbladder was removed (though I've had digestion issues my entire life). I started having episodes everytime I tried to eat. It was like an allergic reaction, diabetic seizure, and adrenaline rush all rolled up into one. I had to completely stop eating for a month. I could only have broth, jello, and protein shakes. I was able to slowly integrate solids back into my diet. Had to start with soft foods such as cooked veggies, soups, etc. I still get days where looking at food makes me ill and I have to force feed myself. I agree that eating small amounts throughout the day helps. My gastro doctor also suspects rapid stomach emptying with me, but we haven't gone through the testing yet. I've also found that even though I don't have a gluten allergy or celiacs, carbs make me feel terrible! I get tachy, my stomach gets bloated, yuck! Just more of the joys of having dysautonomia! Sorry I'm not much help, but you're not alone!

Joann, I stay in a hotel during the week also. I think it is standard for them to want you off meds before testing but if this is a concern for you, I'd see if you could discuss it with someone. Sometimes, I don't think it's completely necessary especially if you aren't able to function without the meds. I'm only on some allergy medications (a low dose at that) so I don't really have concerns going off of them. I hope everything goes well for you in Cleveland! I'll keep you in my thoughts! Arizona, thanks for the welcome! My hubby has a lot of family in the scottsdale/ phoenix area so we're hoping to turn this trip into a mini-vacation as well. We'll have to see how I'm feeling! I'm just excited for some sunshine and warmth! It's much needed after a long winter in the frozen tundra!

Shona, good luck at your appointment! I hope you get some answers, but more importantly I hope you get help to start feeling better! Naomi, I loved him when I saw him in MN! He's the only doctor I saw who gave me his personal card. I think he's very thorough and I remember him really taking his time and listening to all of my concerns! That in itself is worth a lot!

Hi all! I just had to share that I finally got my appointment with Dr. Goodman at Mayo Clinic in AZ! He was the doctor who diagnosed me with POTS when he was at the Mayo Clinic in Rochester. The receptionist didn't go over all of the testing he had planned for me, but she said I should plan on being there the entire week (in the middle of April). I'll know more once I get the packet in the mail! I'm hoping he's going to run me through the ringer and test for everything under the sun! I would love to rule out autoimmune, small fiber neuropathy, EDS, MCAS, all those lovely things so many of us deal with! Thanks for all of the support you've all given me since I've joined the site! My family and friends are happy for me, but I knew all of you would actually relate! Getting appointments can be such a battle! Now I just hurry and wait! Ha Ha!

In my case, pushing exercise has always resulted in a crash. I'm so happy for others who have been helped with exercise protocols. I'm wondering if the success of these programs depends on the type of POTS or whether the onset was sudden, gradual, or always there. I've always had POTS. I've never been able to even jog a lap around a gym wiithout blacking out. I used to get so frustrated by this and I would start exercise programs in an attempt to push through. The outcome was never pretty! I find I do best if I take it slow and easy. I'm currently doing yoga which is working great. I'm gaining muscle tone and doing it in a nice, calm manner. I try to group the poses together (start with floor poses, work up to standing poses, and finish with more floor poses). This eliminates the up and down that can be so hard on us with OI. I also have to make sure to take it easy, even when I'm feeling good. Some days I feel really energetic so I decide to do more exercise. This usually results in me feeling terrible after the fact and I go backwards! I should mention that I did very well with weight training in college. I can't jog a lap, but I can lift weights for hours! Ha ha! But now with two little ones at home I can't get to the gym! I feel ok about it, though, as chasing two little girls around the house is exercise enough!

Lel, I'm currently suspecting that I may be dealing with an autoimmune issue. I'm waiting for an opening at Mayo to go through the testing. I've always dealt with dry eyes, skin, and hair. I have to be careful what products I use because my skin and hair are so dry and I use daily moisturizing eyedrops. So, that might be where the breakage is coming from, even though it's normally not this big of a problem. I will definitely try the biotin and the olive oil! Thank you for the tips! Robin Roberts looked gorgeous! Kudos to her for being so brave!

Anyone else? I used to have incredibly thick hair, now it's falling out by the hand full! What hasn't fallen out, is broken off. I literally have chunks of hair that have broken off and are only about an inch long. The only meds I am on are zantac and zyrtec and this started before I began taking them. Has this happened to anyone else? Any advice on ways to make it stop or at least how to strengthen the hair I still have? I know it's not a debilitating symptom but it is making me sad! Isn't it bad enough that I have to feel like crap, now I have to look like crap, too?! Ugh!

I don't have the exact sensations you describe, but can relate to the pressure. I will sometimes get terrible sinus pain and all over head pressure. I've gone to the doctor for it, but my sinuses are always clear. I've recently developed tinnitus (had it for about 2 months now). The tinnitus and head pressure get worse in the middle of the night. I'm wondering if it has to do with laying down. While my symptoms are exactly like yours, I think it's probably all related somehow. I can't decide if I have inflamation in my head or if there is a build-up of fluid. It feels terrible though! I hope we all get answers soon!

Couldn't have said it better!

I have had symptoms my entire life and still went through a grieving process when I was diagnosed in 2007. For me, beta blockers and calcium channel blockers did not work, so I learned to manage my symptoms without meds. I was living an amazing life and had come to terms with living with POTS. I thought at the time that I was only dealing with a disorder of blood pressure and heart rate. I was managing it beautifully. Now, after surgery, I'm realizing this isn't simply POTS for me. I'm having neurological issues and am probably dealing with something autoimmune or mast cell related (still going through testing to pinpoint the culprit). So, enter the mourning process again. What a roller coaster! I'm glad that your symptoms come and go. Mine are always present, but the severity can wax and wane. Most times, my symptoms are very manageable. As far as learning to live with it, without becoming obsessed... this is something that comes with time. When I get really sick, I get obsessed. I scour the internet reading medical journals, studies, etc. hoping to find something that will help. I live in a rural area where doctors have never heard of POTS and give me confused looks when I see them! I think as you become more accustomed to your symptoms, you become less obsessed. I think it's important to always be aware of your symptoms and constantly learn and keep up to date on your illness, but also live your life! It's quite the balancing act! This forum is a great place to find support. It's great to be able to chat with others who are in similar situations! My family members are amazing, but they can never truly understand what I'm going through! Best of luck to you and I hope you return to amazing health soon! Amy

I get tremors like this. I only get them when I'm extremely symptomatic but they look exactly like that. It's the worst in my legs and it's exhausting! It's sometimes so bad that my legs will ache afterwards. In the past, they would only occur at night and seemed to happen when I was already sick or under a lot of stress. They were especially bad after this last gallbladder surgery. I got them every time I ate for about a month. Even if I only ate a bite of banana. I eventually stopped eating solids and only had liquids for about a month. After losing 25 pounds in a month, I started slowly adding in soft foods and thankfully am back to eating now. I've never noticed anything with my pupils. I do have a lot of eye problems and they always flare with my episodes. With this flare, my eyes have been extremely blood shot and irritated with blurry vision. I remember having these episodes more when I was a kid. It seems I don't get them as frequently now but they are much more severe. It's interesting to me that the lady in the video is so stretched out. I wonder if that is just so people watching can see the severity? When I get these episodes, I always feel best if I curl up in a ball. What are your thoughts on the connection between pupils and tremors Rama? I've always felt that when I'm having these episodes something isn't "firing" right in my brain. I can almost feel it, if that makes sense. Things get cloudy, I have a hard time forming sentences. I swear doctors are on the brink of solving all of this and once they do, it's going to be a "duh" moment. We're soooo close!

Relax86, I agree that our environment needs fixing and we all need to be aware of the damage we're causing. However, I truly don't believe that's the root of my problems. I grew up on a ranch in the Dakotas. There is no cleaner air on the planet, our drinking water came from a fresh spring by our house, we ate beef that we fed and raised ourselves, not a lot of unnecessary chemicals in our house. The rat race is a definite factor as I felt immensely better after quitting my job to be a stay-at-home mom. Obviously chemicals, pollutants, and preservatives do not help our health but for me at least, I don't think it's the cause of my problems.

Thank you for the responses. My extended family members have a lot of poor health. My grandmother has had severe joint pain as long as she can remember and she sits to do everything (even cook). She has never mentioned any Orthostatic intolerance though. My grandfather also had strange health. He would have episodes where he couldn't get out of bed for extended periods of time (one lasted four years) but back then they just called it a nervous breakdown. I have my doubts about that. His father also had episodes similar to this and had a year long episode of being bed-bound when he was in his forties. My immediate family has no symptoms. They are all quite active. My brother has the same insensitivity to anesthesia that I have but beyond that nothing quirky. I'm hopeful that my daughters won't have this. My oldest has more energy than most two year olds which my mom says is already a good sign. I was apparently low energy from a very young age. I am taking my youngest in for a check-up today as I've noticed her pupils are very different sizes. They both dialate fine and she seems to be developing fine so hopefully it's nothing serious but I have her on my radar! ;-)

I'm so sorry you're feeling so terrible. I'm sure brighter days are on the horizon! I wish I had some wonderful advice for you, but I don't. Being sick day after day is torturous! Just know my thoughts are with you! Keep your chin up! :-)

I've had POTS my entire life. After my first daughter, I literally felt the best I have ever felt. I was even asked the name of the condition I have and couldn't think of it because it had been so long since I had any issues. I breastfed as long as I could but had a lot of trouble with supply. I'm curious if this might be related to dysautonomia? My second daughter was born in September and I was feeling good and breastfeeding her until I started having severe gallbladder attacks in November. I was having supply issues again, though. I had surgery for the gallbladder in December and this flare started so I stopped breastfeeding. It's been a struggle since! I don't want to give you false hope because I feel like it might be rare for POTSies to feel better than normal after pregnancy. I can tell you that it was quite a slap in the face to go from feeling like the POTS had gone away to now wondering if I actually have some sort of autoimmune issue. It's hard for me to say if all of these new symptoms would have manifested without the gallbladder issues. I don't want to scare others out of having babies when I feel like the pregnancy, gallbladder pain, and surgery just created the perfect storm for my body to collapse.

I agree Rama! It's absolutely horrifying!

Just wondering about everyone's family history. We obviously all have different types of POTS and symptoms but I'm curious if there seems to be a genetic link. I've already decided I'm going to have a very hard time not worrying about my daughters' health. My oldest is two and my youngest is five months. I'm praying they don't have this!

I've also had a ct angiogram due to elevated d dimer. I was already diagnosed with POTS but had bad chest pain one day. I've had two CTs with contrast and was extremely nervous but did not have a reaction. They didn't find anything either time. I suspect I have MCAS but have not been diagnosed. I normally don't have bad reactions to medications but I do have problems with anesthesia. It can take a long time for me to fall asleep from it, even though I can't feel anything. I hope it goes well for you. I made sure they were prepared in case of a reaction but with some meditation it went well. It gave me a very strange warm feeling and felt like I was urinating even though I wasn't. Apparently those reactions are normal as they warned me about it in advance! I would say the warming sensation went away within five minutes. After, i made sure to drink a lot of water to flush my system. Good luck to you!

I'm also having the muscle issues. Episodes of extreme weakness, twitching, trembling, tingling, and a creepy crawly feeling that I can't explain! You're right it is unnerving!

I have POTS and suspect MCAS. My flushing episodes are better now but my cheeks are still pink. People are actually telling me how good I look because I'm usually so pale and now I have color. I usually just smile and say Thanks. It's easier than getting into it all. I've had episodes like this before. They seem to target different areas of my body. This time it's definitely connected to my digestion. In college I had one that was connected to vaginitis. It was like a terrible yeast infection but there was no yeast infection. I went to a ton of doctors tried a ton of medications. Had some massive flushing episodes where I felt like I was self combusting. My skin was very hot to the touch but I didn't have a fever. I'm hoping MCAS might be an answer for me. We shall see. I'm so sorry you're also dealing with this but am comforted to have a symptoms parter! :-) We will figure this out! I hope you're having a good weekend!

I'm a bit confused by the whole degranulation thing. Is the point of aspirin to make the cells release over a period of time rather than in one big release? I feel like I have a small handle on this as the big episodes have stopped. I did wake up in the middle of the night last night with an episode of sorts, but nowhere near the level they were. I woke up with intense head pressure. It literally felt like my head might explode, my ears were throbbing, and the tinnitus was so loud it was unbearable. My worst episodes have always been at night. By morning it was better. The tinnitus never goes away but it's not so severe this morning. It's not a cold. I've been to a doctor because of the sinus and ear pain and its not an infection. I'm thinking my mast cells are acting up at night and what I'm experiencing is inflammation related. But again, I'm only speculating. I also had an episode yesterday where my tongue swelled. It didn't affect my breathing but my tongue got huge and felt like it couldn't fit in my mouth. I only ate my normal foods so I'm not sure what that was about either. The joys of having a mystery illness! :-)

Issie, 70s sounds wonderful! My hubby has family in Phoenix and they always have to remind us of how wonderful the weather is down there! :-) maybe I'll win the lottery and we can buy a vacation home!

boymommy, I'm sorry to hear you've been having these symptoms! They are miserable and scary! This flare has has me so confused! One of the strangest things is that I can't lay down! When I try to lay down and relax I get freezing cold, start to sweat, my head pressure gets worse, the flushing gets worse. It's so anti-POTS. When I had my normal POTS symptoms, laying down is what made me feel better. I've gone to the ER three times with these symptoms and even in the hospital I had to sit on the bed with my knees to my chest. My legs have even been aching because I've been standing so much. If I feel an attack coming on, I seem to feel better if I get up and pace the house. I can't figure it out. My best guess is that the movement is helping my body burn through some of this adrenaline? I have no idea! It's so out of my norm!

Thanks mydoggielovesme2! That makes me feel better and I will keep calling! If all else fails I'll just fly down there and knock on his door! Haha!