SarahA33

Hi liz, I've read in a few journal articles that some patients with PAF experience chest wall pain (pain around the cartilage that connects your ribs to your sternum) due to possible angina pectoris. Which may explain the tightness feeling you are describing. Have you talked to your doctor about this? If not i'd suggest giving them a call. Sarah

Very excited to see many new members! Welcome..

Srb, Thanks for sharing this!

A tilt is considered the "gold standard", however, Clinical exam's are important, however, so is patient history as well. During a clinical exam my doctor has measured my vitals at 2, 5 and 10 min intervals (supine, sitting, standing) and has paid a lot of attention to my lower extremities to look at blood pooling. There's also close attention paid to my symptoms (lightheadedness, palpitations, flushing, migraine, nausea, etc.) What symptoms did you have during your exam? I'm glad that you have a doctor who is willing to help you! If you do consider the tilt table, or you need a doctor who specializes in autonomic disorders, you can search our physician list for someone closest to you: http://dinet.org/index.php/physician-list Sarah

Hi everyone! Just a reminder.. The Forums are public, which means that anyone on the internet can view information here. For that reason, we try to limit the personal information that is shared, so please do not post your e-mail address in this thread. You may use the PM feature at your discretion. Thank you!

hi there, I'm sorry your hurting right now. Most attorney's do free consultations, what about reaching out to a lawyer to see where you should begin? I really don't know. Hopefully someone else here will have some advice.

Hi ks, This has been happening to me for the last year on and off. (3 or 4 times) My hematologist and pots doc's are aware of it. Co2, anion gap and chloride are slightly elevated. Was your creatinine normal? Mine always has been which means my kidneys are functioning okay at that time. Also, what about your glucose? Mine was borderline low once or twice? I am on Trokendi XR (extended release Topamax) but they were elevated before this. I blame the low glucose on the Topamax because it has caused such suppressed appetite, unless I remind myself I'm almost never hungry. I also have had the same thought re: dehydration. I'm guessing the ER ran the labs before they gave you the fluids. Would have been interesting to do a before and after! Hopefully this next set of labs that your primary ordered will come out okay! Sorry to hear that you were in the ER :-( I hope that you are feeling better. Sarah

Jason, No problem, moderator's can edit title's for members if needed. I'm truly sorry to hear that you've been plagued by this for so long. When it's affecting all aspect's off your daily life, ie; career, family, etc., it becomes more than an inconvenience. I'm glad that you've found some encouragement from my response. My doctor has said that he's seen patients respond well or some haven't at all, and that my response has been quite profound. It's actually pleasantly surprised everyone I hope the same for you! Here are some article's that you might want to check out. The first one you might find really interesting. http://content.onlinejacc.org/article.aspx?articleid=1358180 http://www.medscape.com/viewarticle/705913_3 http://heartdisease.about.com/od/womenheartdisease/fl/Ivabradine-for-Inappropriate-Sinus-Tachycardia-IST.htm

Welcome, everyone! We're happy to have you all here, let us know if we can help in any way!

Hi, Jason, welcome to DINET! FYI -- I've fixed your title for you. I've had so much success with Ivabradine. I spent 8 years trying to control my IST and tachycardia from my POTS and nothing worked. (Mass doses of all types of Beta Blockers, Alpha Beta Blockers, Calcium Channel Blockers) I was actually at the point where my Electrophysiologist was going to refer me for a Sinus Node Modification Consultation because of the refractory tachycardia and then we tried this. It's worked so well for me. Everybody is different though, but in my opinion more doctors need to at least be willing to familiarize themselves with it now that it's been approved. I hope that things improve for you soon. You've got a lot going on it sounds like, hang in there. I'm glad that you've found the forum! Just in case you are interested, one of our medical advisors for DINET, Dr. Suleman is an Electrophysiologist who is located in the Dallas-Ft. Worth Area http://dinet.org/index.php/about-us/advise , http://dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=390 Sarah

Hi Mike, I definitely experience heightened mood fluctuations when I'm sleep deprived, very emotional and sensitive. My memory can also be affected, I turn into an even bigger klutz and walk into things! Totally get the frustration that you are feeling at this point, insomnia on top of having chronic conditions is a lot to go through. I was wondering if you've had a recent blood test of your thyroid and your hormone levels. Those play a huge role in sleep regulation. Congratulations on your upcoming anniversary and enjoy yourself during this milestone!

Rachel, What a difference a year makes, right? Especially if you start adding all of them up! I can't believe the progress he's made over the last few year's that we've all come to know you guys. It makes my heart so happy for you and your family I bet Tyler is happy to get the Port out! Thank you for sharing his exercise protocol also. Take care, Sarah

Vonant, here is another article from Mayo, scroll down to table 3 for diagnostics: http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/full Here is a link also that explains the blood draw process that Ks42 mentions above: https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/

Hi Vonant, Sorry to hear that you're experiencing these symptoms. While we are unable to tell you here on the forum if you have a specific diagnosis or not, here is link to our physician's list: http://dinet.org/index.php/physician-list You can search for a doctor who specializes in dysautonomia/POTS. Do you have a primary doctor who would be willing to refer you for a tilt table test? If you are concerned about a hyperadrenergic response then you should have catecholamine (Norepinephrine levels) measured at supine and standing throughout the test. Also, here is a link that mentions the various subtypes: http://circ.ahajournals.org/content/127/23/2336.full Sarah

Kelly, here's a study you may want to share with your gynecologist regarding POTS and gynecological disorders: http://europepmc.org/articles/pmc3413773 Sarah

Lenna, thank you for letting us know of the remarkable progress he's made. It's so nice to read that he's doing so well, thank you for sharing his medication experiences and update with us! Sarah

That's great that they've helped, Kris. What a relief that your sedated for them! My insurance company denied my botox the first time, now they've been approved every time the last 2 years. Actually now that I think of it, I'm not sure how I was denied because I had met all the criteria, but it is what it is. You should look into the criteria you need to meet before it will be covered, (example: I had to try certain medications, have more than 15 headache days out of the month etc.)

My heart goes out to you, Kris. I know what a tough summer it was for you and how you've pushed through it. Hopefully things will improve once it starts cooling off, at least somewhat. I'm sorry you aren't going to get a chance to see your pots doctor when you will be at Mayo, An option might be to discuss with the GI doctor the severity of your POTS symptoms and he/she could recommend a f/up appointment with your POTS specialist. I'm so sorry about the GI doctor. I get botox for migraines every 8 weeks and it's really painful, so I'm going to take a guess that where you get the injections feels like absolute torture. It's a painful thing to have done, so its not like you'd be putting yourself through that unless it helped, and this guy telling you it's all in your head and then injecting you doesn't make sense to me. I totally agree with Katie, his treatment verses what he says doesn't add up. Also, It's terrible that you got stuck with an $8,000.00 bill because he didn't do the peer to peer. Has the FDA approved it for your condition yet? My suggestion at this point would be to do a search for GI specialists (in however many cities away you have to try) who perform this procedure and move on from this guy. On a brighter note, I am happy that Mayo is coming up for you shortly, and I am thinking positive thoughts! You've got friends here who care about you and support you. Sarah

Hey Mike, what a huge bummer the sleep doctor didn't have anything useful to offer I'm sure your just exhausted physically and emotionally from all of this. I know what you're going through, and many others do also. I just wanted to tell you that I think your handling it so well! It is encouraging that you've been able to get 5-7 hrs recently, we'll all keep our fingers crossed for you that this upswing continues! Sarah

Hi Kelly, I'm glad that you could continue with the TT w/o Nitro. I've always wondered if some doctors would go back and say, "Well, we did give you Nitro so maybe your symptoms were exacerbated" or something along those lines. You just never know. What good news that you have a doctor who is knowledgeable in POTS and is sensitive to what your going through. That's hard to find. My pots specialist is an EP also. I've made great strides working with him. The compression stockings have been helpful for me, I know they can be pricey, so amazon has been helpful. There's some past threads if you do a search. Best of luck to you, it sounds like your headed in a positive direction. Sarah

Hi Sylvie! That's great news about the yoga.. I'm happy for you that you were able to do 25 minutes yesterday, that's really a long time! I have motility issues also. I'll try to share some things that have helped me.. I like greek yogurt too, but its a bit heavy for me now a days so I buy a probiotic. You mentioned liking chicken also, is it possible to make extra the night before and have it for leftovers in a salad for lunch the next day? The biggest things that have helped me has been staying away from big meals, heavy foods, and anything w/ grease/high fat content. I'm excited for you that you've now got a Magic Bullet--those are great! Some of my favorite smoothies throughout the day are chocolate peanut butter banana (2 c chocolate chips, 2 frozen bananas, 1/4 cups natural peanut butter, blend on high in order), Strawberry Cheesecake Smoothie (1 1/4 c frozen strawberries, 1 tablespoon cheesecake fat free, sugar free instant pudding mix, 1 cup vanilla almond milk, 1 tsp splenda and blend together), Mango's/Peaches blended w/ Plain Yogurt. Those are my favorite's!

I just had to have a venous ultrasound (Doppler) of the lower extremities to rule out blood clots for same thing bigsky, except mine can match up but also one side can be much colder than the other. I'm talking reddish, purple, freezing, numb, pins and needles, swollen feet at times, worse when I'm on them but ca happen even when they're elevated. Anyway, the Doppler was negative for clots thank goodness. However, my neuro was adamant I get the test right away because the blood pooling puts me at a bigger risk for clots. I see him on Sept 11th for Botox and a follow up, so ill know more about what we're doing next. I know you've gone through so much, but if you haven't had the Doppler maybe you could ask your cardio to look into it. Hang in there Sarah

Wishing you the best chaos, hope the treatments take off for you as well! Sounds like you've gotten a pretty great start, will be hoping that you continue to improve symptom wise with a combo of sub-ivig and meds. Hoping for a very quiet fall season for you Sarah

Hi there, I wish I had something to personally reassure you, I'm just sorry your feeling like this. I remembered reading something similar a while back, I hope this helps a little. Do you have a cardiologist or doc you can call? Hope this subsibes soon for you Sarah http://forums.dinet.org/index.php?/topic/25579-what-is-air-hunger/?hl=%2Bconstantly+%2Byawning#entry240796

Hi Erin, Well thanks for passing along the manicures and palpitations link, I'll try to keep that in mind next time I'm on the floor! Lol.. I'm sorry that you've got a reason to post, but I just love reading them. You have such a great sense of humor and wit. Are you on any medications that could have affected the outcome of this ekg? I bet you were surprised and concerned to say the least, especially expecting a normal ekg. Like Katie mentioned it does sound like your new cardio is the next logical steps. Take care of yourself, let us know how you are doing if you can Sarah