SarahA33

Hello everyone! Welcome to our community

Hi Sharon, I apologize for the delay in responding! I have a close friend from the forum who sees Dr. Shields, I know she likes him a great deal and has successful visits with him! Others on the forum have also had positive things to say about him. There is an option to search (box up top) where you can enter his name in if you'd like, maybe you can come up with some results that way! I'm sorry that you have had to experience feeling so poorly at work. I hope that you are able to find some answers and move forward soon. There are a lot of people who do understand, even though the those closest to you may not be able to right now. Wishing you well! Sarah

Me too Rich. Will be wishing you the best also as you continue this treatment. Fingers crossed for you as you move forward with this..

I hope you start feeling better too, Jackie! If you feel something is different this time then trust your instincts. I'm sending positive vibes your way!!

Hi Jackie, I have episodes similar to what Statesof describes.. My chest feels very heavy at times, like there is a lot of pressure and is tight. I've had any cardiac issues ruled out by cardiologist's, and when I've felt the tightening of my chest I've been fortunate that Ive had a holter monitor on at the time so I pushed the event button, but nothing was ever found to be linked. here are 2 past threads that are really interesting on this topic,.. wishing you the best! Sarah http://forums.dinet.org/index.php?/topic/26412-pots-has-given-me-a-dose-of-health-anxiety-heart-disease-in-younger-women/ http://forums.dinet.org/index.php?/topic/26676-chest-pain/?hl=%2Bchest+%2Bpain Just throwing this out there, but, Statesof.. The only thing that really has shown up in cardiac testing while I was having these events was during my Bubble Echo where they found a PFO, I remembered reading at one point that you had one also I think? Do you think there is any correlation to that?

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Dizzygirls, That's great news, I know how long your family has been waiting on this appointment! I'm so excited for all of you. I haven't been to Standford, I'm sure you could call the Clinic and ask to speak to one of their cardiac nurses there. When I went to the Cleveland Clinic for my initial work up and appointments, I was scheduled to have a tilt table. However, when he did the clinical exam and rechecked my vitals he said it wasn't necessary to put me through that. I think that is rare though, but I had the same concerns as you did.. my test was early and I still had to get through the rest ot the day and make it home in one piece, and I knew after the tilt I wouldn't be functional. I continued with the valsalva and autonomic deep breathing tests. At CC they were in set inlc the tilt. Here's the link for CC's testing page just for some info, http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/autonomic-laboratory I did find a page for Stanford's cardiac testing just incase you've not seen it https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program/autonomic-testing-laboratory.html

Hi Prov31mom, I wanted to take a quick moment to welcome you to DINET.. You must be feeling unwell today after having your Tilt, I remember feeling so poorly after mine.. and you've got 3 kids to take care of, I don't know how you do it! You deserve a metal or something! Its totally normal to feel overwhelmed, I'm overwhelmed a lot. I think its been important to constantly keep redefining my goals -- I'm a goal setter, so I didn't stop setting them, but I readjusted them to short term goals instead of long term. And I also remind myself almost on a daily basis to be kinder to myself, and that we're all just doing the best that we can with the cards we're dealt! I unfortunately overdid it today and the room is spinning, so I have to lay down. But I will write some more tomorrow. Sarah

Hi shrparatch... A big welcome to our forum, among some of your symptoms we have another thing in common as well, I'm also a patient at the Cleveland Clinic. My local doctors diagnosed me with POTS w/ a hyperadrenergic component but my case became much too complicated so they referred me to the Syncope and Dysautonomia Clinic. Are you seeing neurology or cardio there? You are definitely not alone in this, I know it can feel like that sometimes. I think of this as an isolating condition, especially when I was bedbound for months at a time, and friends and family try their best to understand but they don't grasp the decline and symptoms usually. I'm here to tell you that there is light at the end of the tunnel, and I do still have my bad days, but before I went to the Cleveland Clinic I had soaring HR's that weren't controlled by any med's previously tried here locally and I was confined to my bed/couch 2 or 3 days out of the week. I was started on a medication called Ivabradine that Dr Jaeger suggested, and he also readjusted my beta blocker and sent me to an epilepsy specialist at the CC who correctly diagnosed my epilepsy and put me on the correct dosing of antiseizure medication and I have been seizure free since May, and this morning I rode my bike outside for 20 minutes. I haven't been able to do these things in 7 years. Unfortunately, I am not able to work as of now and receive SSD. I was just too sick. Things are still an on-going daily challenge, and new things pop up all the time, but it helps me to have friends who understand what Im going through. I also experience migraines, along with my HR those are my worst two symptoms. I get botox every 8 weeks for them and it helps some. Again, welcome to the forum, and I'm glad that you've found us. It made a big difference for me a few years ago when I joined just knowing that others were out there and I wasn't alone. Hang in there! All my best Sarah

Thanks for sharing that Nicole. I wonder if when I have major BP spikes my serotonin could also be inclining. I think a good way to know would be to do the 5H Urine and check with my BP cuff at home so that I could attempt to catch an episode. I'll see what my doctor thinks, and if he thinks there is anything we can do with the results, as the high serotonin has actually been going on for years. We've tried changing all meds, certain foods, environmental triggers. This just seems to be my body's baseline. Hopefully your call went well with the nurse and you got testing approved.

Dancer, your welcome for posting this. Ive also been wanting to post about Dopamine and Norepinephrine and Gaba also. Shame you experience migraine headaches also, they are brutal and exhausting. Angeloz, I'm sorry that you get really bad migraines too. Feel free to drop me a line anytime What confuses me regarding my migraines and serotonin link is that my levels are always testing high. I'm not sure how that plays a role into pain. My neurologist has said that it could play into my anxiety and memory less.

Thanks for sharing this with everyone Katherine

Hi Issie.. If I remember correctly I think this is one of the meds, they used the generic name, acetazolamine, that was brought up when deciding on an epilepsy medication. I never went with it, after reading your post it sounds like I made the right call. Im sorry that you went through all of that.. Going from stage 3 to Stage 1 is a huge accomplishment! Curious to know your thoughts on ccsvi, I posted a video recently by Dr. Zivandinov who conducted a huge MS study on it after Dr. Zamboni came out with his research. The video is in TVAM Treatment Im happy you are doing well. Sarah

Hi Dancer! There really is nothing like having a doctor listen to you when you are feeling so terrible and have been dismissed in the past. I'm on board the happy train with Corina, that's great news! When we have a diagnosis then we're able to find the best treatment that works for us. I wish you tons of luck! Sarah

A few months back, my POTS neurologist tested serum serotonin. The interesting thing about my results is how very different they are, the first set was done at 7:30am, and the second set was done at 1pm on the same day. (Lab ranges are in parenthesis) Serotonin (Serum - 101-283) 1.569 2.332 Serotonin, as most of us know, is really hard to get a good reading as most of it is stored in the gut. But did you also know that it's also stored in the blood platelets and in the central nervous system? I think the most accurate way is the 5-hiaa urine, what about you guys?I know its often linked to feelings of happiness, contentness, etc. But I just recently found out that its thought to regulate mood, sleep, and appetite. Also, the following articles talk about serotonin and how it regulates GI motilityhttp://journal.frontiersin.org/article/10.3389/fnins.2012.00016/full http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694720/ Low serotonin is often linked to migraines. However, I have migraines on a daily basis and clearly my numbers are too high . I don't take any supplements or anything. They've always tested higher,. http://www.neurology.org/content/65/4/E9.full

Kris, just had another thought.. do you wear cooling vests when you ride? I know they also make hats too so you could possible put that under your riding cap?

Hi there, Have you had your serotonin levels checked through a 5-HIAA 24 urine? Getting a really accurate number is almost impossible because most of your serotonin is made in the gut.. I'm sure a blood sample would be a good base line. http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/84395 Is anyone familiar with their serotonin #'s or if they feel that it plays a role into how they feel on a daily basis?

Hi Kris, sorry your having a rough go of it.. I'm always rooting for you! I did bring up the possibility of IV fluids in one of your earlier posts, I think it would help you immensely. I'm pretty sure your GP would have to write a script for a liter (or how many he or she chooses) but not write any maximum visits on it, so that you could use it when you needed it,. You'd have to find an infusion center of some sort, and they usually take care of the insurance paperwork and authorizations. Your GP might be able to suggest some infusion centers. I hope you hear back from Mayo soon! Sarah

Oh my goodness, so many new peeps! Welcome, all of you, to DINET! Please let us know if you have any questions! Sarah

Welcome Nicole, how are you feeling? Did you at least get the summer off from school?

Bethany - Your doing a really great job playing quarterback, so just keep hding on a few more weeks for help to arrive! Sarah

I know that most of you on this thread have active following cardiologist's, but if by chance you are experiencing chest pains that haven't been checked out and cleared by a doctor, it's safest to call your primary care doctor for further instructions.

Good luck dancer! Wishing you all the best...

Hi Rachel, Thanks for the post. lmfree, I just wanted to say that you have the kind of determination that will continue to push you forward, and hopefully motivate others in the process! It must be so difficult at times, please know that we are all here behind you at DINET and rooting for you! It really struck a cord with me when you said, "Even if I have to deal with it for the rest of my life, I am determined to do it on my terms, and not miss out on life." I love that, thank you for sharing that with us. I need reminders every so often to not miss out on life, so thank you lmfree Wishing you continued strength to keep up all your very hard work! Sarah

Hi Big trouble, Here is a great website that I have used for years when looking up labs that my doctors have given me: https://labtestsonline.org/ This is my go to place if I wonder why/what they ordered something unfortunate that Calgary is so far away, however there are other great doctors out there who can help you, don't lose hope! I found a couple of names in the Montreal Area: Dr. John Stewart and Dr. Jean Cusson PhD. They treat autonomic conditions. To answer your question, I've been on a lot of medications ( Metoprolol, Lebetalol, Cardizem, Bisoprolol, Verapamil, Lisinopril, amlopdipine, Clonidine pill, Catapress patch). My current EP/POTS doc at the CC recommended the Ivabradine as it actually works directly on the sinus node. By no means am I fixed or cured, but I'm heading in the right direction with his help, Ive not had heart rates these low in like 7 years.. Since I was on such a high BB dosage I'm now trying to reset my beta-receptors by lowering my doses. Your right Bigtrouble, IST rates do tend to drop while sleeping in some people, I even had a few nights where I went into low 100's, and 60's, But, there are also patients that can incline and spike as well. I'm trying to remember a conversation with my doctor from almost a year ago, so forgive me, but I'm certain he told me the defining criteria for IST 100bpm+ at rest and exerts to higher numbers w/ minimum exertion. That could explain your stair dilemma... I couldn't even put my own compression stockings on at one point many years ago. We all have to start somewhere, and despite it being a long road, now that you've found the forum, hopefully we can help you navigate Here's a link on POTS/IST overlap: http://content.onlinejacc.org/article.aspx?articleid=1486711 Good luck to you, Sarah