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Good! I'm glad your levels were mostly normal. That is strange about the B6. Our crazy bodies don't like to follow the rules! It sounds like you've really been through the ringer and I hope you get some relief soon!

Susanhs, just wondering if you have had all of your vitamin levels checked? Dr. Goodman at Mayo just found me to have a severe B12 deficiency and after doing a lot of research I've found it can be responsible for a ton of bad symptoms. Dr. G. and I agree that it's not my main issue, but it's contributing to the problem. I've been on the vitamin for three weeks and last night I carried my toddler up the stairs. My heart was still racing but I didn't black out and there was no shortness of breath! I know we're all different, but it's an easy test and might be worth checking into! I hope you find answers and relief soon!

That is too many years, Issie! Ugh! I can relate to the constant illnesses. I was constantly sick as a child. I actually feel like that part has improved (knock on wood)! I'm glad you've found some things that help you and I hope it just continues to get better! Thank you again for your kind words and pointers! :-)

I've had symptoms since I can remember. Even as a really small child I had stomach problems, exercise intolerance, fatigue, etc. I'm hoping the best for both of you! She's lucky to have a mom who is already knowledgable in POTS.

You are full of good advise Issie! Thank you! :-) I've had this horrendous condition for 27 years, but this year has made me feel like a newbie! I guess that's what I get for thinking I was improving and letting my guard down! Ha! Stupid POTS!

Sorry I haven't responded in a while. It was a hectic weekend! Looneymom, a magic pill would be fantastic! I would pay a lot of money for one! :-) Giraffe, he has started me with 1000mcg daily in pill form. I wonder if I should be taking more but he's the expert! :-) I'm going to take it for two more weeks and them I'm supposed to call him. He mentioned re-testing my levels to make sure my body is absorbing the oral form. If not, we'll switch to injections. Issie, that is really interesting. I think I'll ask Dr. Goodman his thoughts when I check in with him. Thanks for the link Alex! Cupcake, Dr. G. said he thinks we have malabsorption, too, but hasn't put together the pieces of why. I really went backwards this week and the only thing I can contribute it to is the fact that he had me stop the Zyrtec and Zantac. Dr. Goodman thinks my symptoms were a combination if things. My B12 was already really low and then during surgery they gave me nitrous oxide which further depleted my levels. Dr. Goodman also suspects that us POTSies have tendencies to be easily triggered into autoimmune reactions. He said if I ever have surgery again, I'll need to have Prednisone right away to keep my system in check! If only I had known that sooner! :-)

Looneymom, for the catecholamine test they insert an IV into your arm and then have you lie in a dark, quiet room for 30 minutes. A nurse then sneaks in and does a blood draw from the IV and take blood pressure and pulse. Then you stand for ten minutes (if you can) and they do another blood draw and pulse and blood pressure reading. I'm not an expert on all the things the test looks at but I know one of them is norepinephrine levels. If you have hyper POTS, your norepinephrine levels will increase a lot upon standing. Mine always increases but not to the point of being Hyper. Joann, I agree that the B12 won't be my cure. I wish! Haha! I'm ok with having my normal POTS symptoms. I've literally had them since I can remember. It's all this new muscle weakness, nausea, shaking, ringing ears that's driving me crazy. I just want to go back to my usual heart and blood pressure issues! Haha! How sad is that? Dr. G. also suspects mine could be a malabsorption issue. I really wish they could just get to the bottom of all this!

Ok, I should have done more research before asking this! Ha! Apparently, nitrous oxide can deplete the B12 level that is actively in your body (not the level in storage). So, if you have a low B12 level and are then exposed to nitrous oxide (like I was for surgery) you can have severe symptoms within days. I'm attaching an article that probably explains it better than I can. This is important for people with B12 deficiency to know, though. Very interesting! I live when the pieces start falling together! http://www.medmerits.com/index.php/article/vitamin_b12_deficiency/P13

I know B12 has been a hot topic this week, which is lucky for me since Dr. Goodman diagnosed me with a severe deficiency a couple weeks ago. I'm going to backtrack a little bit for those who don't know or remember my story. I've had POTS my entire life and had learned to manage it with no meds (didn't tolerate their side effects). Then, in December I had my gallbladder removed and it all went down hill. I started having episodes of nausea, severe shaking, cold sweats, tachycardia, tense arm and leg muscles followed by muscle weakness, tinnitus, blood shot eyes, etc. The episodes were first triggered by eating and also occurred at night time as I was about to fall asleep. After living on broth and losing 25 pounds, I was slowly able to integrate real food back into my diet. I started an H1 & H2 blocker around the same time that I was able to start eating again (not sure if that's coincidence or not). A couple weeks ago, I went to Dr. Goodman and repeated all the testing. I have symptoms of Hyper POTS, but the catecholamine test ruled it out, I have hyper mobility, too. The only real things that showed up on the tests was "rip-roaring POTS" (Dr. G.s words), mild anemia, and the severe B12 deficiency. We decided I should stop the mast cell meds and start supplementing with iron and B12. That was about 2 weeks ago and this week has been terrible again. Having some of those same old symptoms. I guess my major question is if any one has had these same symptoms and had them corrected by B12 supplementation. I feel like I'm in a POTS category of my own! I don't understand why this B12 issue would suddenly act up after surgery? I completely trust Dr. Goodman. He is amazing and so helpful. Just wondering if anyone has had a similar experience? From what I've read, B12 deficiencies aren't something that can happen suddenly so I'm a little confused about why the symptoms would start suddenly after this surgery! Ugh! Maybe I should just go to medical school so I can try to wrap my head around all of this! :-)

POTSie Problem #462: Being super excited that they can now study POTS in mice and not having anyone to share it with! My hubby came home and I was so excited about this article from Pubmed and I got the blank stare! Haha! Poor guy! I guess he just can't relate with why torturing innocent little mice would be so exciting to me. I think this is a big step for POTS research! And I apologize if this has already been talked about. Sometimes I'm a little behind on these things! :-) http://www.ncbi.nlm.nih.gov/m/pubmed/23580201/?i=1&from=postural%20orthostatic%20tachycardia

Margiebee, so sorry you're dealing with this! If its any help at all, my twitching has subsided and not been an issue for a couple of weeks now. When I went to Mayo two weeks ago, we found I was low in iron again and severely deficient in vitamin b12. Dr. Goodman also suspects I might be dealing with a mast cell issue but we're going to address the deficiencies before adding the mast cell cocktail. My symptoms tend to come and go so I can't say for sure that the supplements are the reason the twitches stopped. It's a possibility though! I know b12 can cause your body to go through all sorts of crazy things! I hope yours stops soon. After this toe twitch I originally posted about, I dealt with a twitch above my right ear. That was a really strange sensation, but it also went away after a couple of weeks. Have you tried ice on your finger? I'm not sure if it helped with my twitching, but it helped keep inflammation down. Good luck! :-)

Dr. Goodman at Mayo just discovered I have a severe B12 defficiency when I was there a couple of weeks ago. He feels that addressing that issue will make a huge difference in how I feel. I've been on the B12 about a week now, but I know it will take some time to build up in my system. I'm also supposed to get re-checked after four weeks to make sure my body is absorbing the B12. If it doesn't, I'll have to get the injections. This video makes me hopeful that the B12 might help more than my pessimistic mind thinks! Thanks for sharing!

I saw Dr. Fealy when I was first diagnosed there and really liked him. I just got home from Mayo's Scottsdale campus and have always had good experiences (this was my 4th trip). They don't provide me with regular follow-up care but are always good about letting me call with concerns or seeing me during a flare. In my experience, the doctors there are willing to help you try a medicine regimen to get your body back on track. I would just take your list and have an honest conversation about it. One of the most amazing parts about going to Mayo is how the doctors are so willing to really listen and take their time with you! Good luck with your trip and keep us updated!

My fingertips wrinkle a lot even when I haven't had my hands in water. I've always wondered about

My gallbladder problems started this last year after having my second baby. I was 26 and slightly overweight. I know it's common to have gallbladder problems after pregnancies though. During pregnancy your body releases hormones which relax the tissues in your body, allowing you to grow with the baby. These same hormones can cause your gallbladder to relax and stop contracting. My gallbladder was completely filled with tiny stones and was inflamed. The doctor wonders if my gallbladder was never fully functioning to begin with and pregnancy magnified the problem. Who knows! All I know is that it caused my most recent flare! Ugh!

I've actually started using All Free and Clear laundry detergent, but I don't think that's the issue as I've had the same episodes at my in-law's house and while napping on the couch. I've been doing some reading about how the body tries to naturally heal itself while you are asleep and I wonder if that has something to do with it. I need to do some more digging to see if there's any scientific validity to that but it makes sense to me! I'm sorry to see that so many of us deal with this! These days it's really hard to avoid scents and chemicals! It's very frustrating and I truly appreciate all of the tips and suggestions! :-)

Thanks for the advice and responses! I'm definitely going to try your suggestions for cleaning. It just baffles me how all of this can start all of a sudden. I've had POTS forever and didn't have any of these issues. Now, all of a sudden I can't stand cleaning products that I've used for 27 years! So strange! I also still can't understand why I have all of my extreme episodes at night. I dread going to sleep because I know I will wake up shaking, freezing cold, sweating, with tachycardia, head pressure, etc. etc. Maybe avoiding some of these triggers will help with all of that! Thank you all again!

So, I've been going through the very slow process of spring cleaning my house. Yesterday, was the day to empty and scrub the kitchen cupboards. I was using my usual cleaning product, but this time the smell was really getting to me. I didn't have any flushing, but I was feeling dizzy and just generally un-well. Then, last night was terrible! I was having adrenaline surges, tachycardia, and burning in my stomach. The only thing that had changed from my normal routine was using this cleaning product. Is it possible my body was reacting to the cleaning product hours later? I had scrubbed cupboards in the morning. It seems that all of my severe episodes occur at night. What is that about? Any input would be appreciated. Also, any advice on good cleaning products since apparently my body no longer likes this one.

I'll link to the bracelet I purchased. There are many others out there, though. I've had good luck with this brand. The software is very user friendly. I've also had issues with having reactions to bracelets (sensitive skin) and have had no problems with this bracelet. Here is the link to their website: http://medicalhistorybracelet.com/ Here is a blog post I wrote about the bracelet: http://topsy-turvylife.blogspot.com/2013/03/posted-few-days-ago-about-my-new.html. I will say that this style doesn't work very well with dressy attire. I know there are other companies who make USB bracelets that are made of metal and are a little dressier. Maybe check Amazon?

bustersacc, have you looked into a medical bracelet with a USB. I just purchased one and fell in love! You can store a ton of info on them such as allergies, reactions, ect. I've even scanned articles about the dangers of anesthesia to a person with MCAS, just in case I ever need an emergency surgery. They are amazing! I've had bracelets in the past but found them ineffective because doctors didn't fully understand my condition just from the words "POTS Patient". OK, my plug is over now! :-) I hope you feel better soon!

Joann, I've been dealing with similar sensations. I don't get it so much in my legs and arms but in my cheeks, ears, and digestive system. My face sometimes flushes and actually gets warm to the touch. My digestive system is the part that's really been bothering me. I actually had an episode of this last night. I was awake most of the night with burning that started in my stomach and literally felt like it was spreading through my entire digestive system. I also had tachycardia. I did a little self-talk and convinced myself to just go to sleep and it would be better in the morning. It is better, but I feel wiped out now! I'm sorry I haven't found anything that actually helps with this. H1 and H2 blockers have helped with the actual flushing and cold sweats I sometimes get with these burning sensations. The burning itself hasn't stopped though. I'm going to bring it up to Dr. Goodman when I see him at Mayo next month. I'll let you know if he has any suggestions!

I've actually had the opposite happen, but it was after surgery. My heart rate jumped every time I coughed and sent the poor nurse into a panic. They wanted me to try to cough every fifteen minutes to keep my lungs clear, but changed their mind after my heart rate started spiking! Maybe a reaction to anesthesia for me? I'm sorry you're dealing with this. I haven't dealt with bradycardia very often. Usually only at night while I'm sleeping, but I'm sure it's uncomfortable! Hopefully, you kick this cold and feel back to normal soon! :-)

1. I wish I wouldn't have just stopped with the POTS diagnosis. It never occured to me that there was probably more going on. I was so happy to have the POTS diagnosis and learned to manage my symptoms well, but then I suffered a major crash with all new symptoms. I now realize I was always dealing with something more than just POTS, I just wasn't connecting the dots. I've always had unexplainable illnesses, infections, stomach issues, etc. but didn't think it was connected until now. My POTSie brain is kind of slow! :-) 2. I still wish I could find a way to get adequate follow-up care. I live in a very rural area and it's nearly impossible to find doctors willing to learn about my illness. Mayo Clinic has been amazing during my crashes (this will be my fourth trip), but I would love to have a doctor close to home to help me manage day-to-day. I still haven't figured this one out! 3. It's important to be completey honest with family and friends about how you're really feeling. Don't try to sugar-coat it. Friends used to invite me out, I'd say yes (knowing I probably wouldn't actually be able to), end up cancling at the last minute because I didn't feel well, and they would get upset. This happened countless times and I lost some friends because of it. I think they would have been more understanding if I would have just been honest. I think I was probably still in denial about the whole thing myself. It's a process.

Oh awesome! Lots of great news! So happy that is all behind you now! :-) You'll have to let us know how the rehab program works for you!

Good luck at your appointment! So glad you are finally getting good help! Enjoy the sunshine and warm weather!