ACB Posted March 26, 2011 Report Share Posted March 26, 2011 Hello, everyone! My name is Alison. I'm 33 years old, married, and have a two year old son. I have a master's degree in psychology (clinical) and have been a stay-at-home mom since my son was born. I was diagnosed with POTS after I had a TTT performed at the end of January of this year. I've had increasing symptoms of POTS since age 3 or 4, when I developed sporadic chest pain. Then, in high school, the painfully cold (and very sweaty in the past, as well) feet and cold intolerance started. Then, about 8-9 years ago, during grad school, I began having periods of fatigue, cognitive difficulty, and irritability (due to trying to push through the fatigue). Until June of last year, I'd been experiencing all these symptoms off and on, but was still generally functional. Then, in June, I had a rapid onset of new symptoms (i.e., dyspnea, increased fatigue, palpitations, chest fullness, nausea, dizziness, near syncope). After this onset, I began exhaustive cardiac testing, followed by endocrinology testing, at my insistence (of course my PCP gave me an anxiety dx and washed his hands of me - so I found a new one). All testing showed nothing abnormal other than vitamin D deficiency and most docs told me to just take it easy. In January of this year, my sx again increased in frequency and severity. My fatigue became so severe that we've hired full time help while my husband is at work, because I'm no longer able to care for our son. My new PCP also wanted to dx me with an anxiety disorder, so at my follow up appt in January, I brought along my husband, who has a PhD in clinical psych and is a specialist in researching, diagnosing, and treating anxiety disorders. Finally, my new PCP listened when my husband backed up my explanations of why my sx didn't meet criteria for anxiety! At that time, the TTT was scheduled. The day of the TTT, the cardiologist who glanced at my results reassured me I would not need a pacemaker for my fainting. Wow. Thanks for that irrelevant information. I had repeatedly told everyone there that I was referred, not for fainting as they all assumed, but for POTS. No one listened or read my chart. When I explained to him that I was there for POTS testing, he said, "Well, it definitely could be POTS." (Sorry for the mini-rant about one of the many, many errors I have encountered during all of this!) Because I had already been lurking on DINET and reading all I could find about POTS, as soon as I got home from the TTT I started salt and water loading. I elevated the head of the bed, bought a recumbent bike and started riding it and doing leg lifts and crunches, and got compression hose. Then, I began the process of getting a referral to Dr. Levine in Dallas through my PCP. That appointment should happen in 3-4 months. I also started the process to enroll in his exercise study. I should have the protocol by next Friday. In the meantime, I started seeing a new cardiologist who has some basic knowledge about POTS. Our first appt was 3 weeks ago. He prescribed fludrocortisone, 0.05mg/day. I have seen no improvement in symptoms. My systolic BP has risen from the 90s to the 100s most days and that is the only positive change I have noticed.Over time, I've been developing new symptoms, such as an intermittent red, itchy rash that looks like goose bumps and paresthesia of the feet, hands, and lips. In March, I got a wheelchair so that I will be able to leave the house at times to avoid the increased fatigue and pre-syncope from standing. I have the energy to drive maybe once a month if I'm lucky. Oh yeah, I also have periods of excess energy at times, which I actually enjoy even though they're quite uncomfortable. At least I can get off the couch!OK, this post quite long by now. I want to end by thanking everyone who posts on DINET so incredibly much. With all of the information I've learned by reading the posts on here and on the rest of the site, I was able to request proper testing and follow through on finding a proper diagnosis for my sx. I really appreciate all the research that is posted and explained and discussed by everyone. And, the support that posters provide is amazing, as well. I hope that I can be of help to other members over time, too. Thank you! Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 26, 2011 Report Share Posted March 26, 2011 My new PCP also wanted to dx me with an anxiety disorder, so at my follow up appt in January, I brought along my husband, who has a PhD in clinical psych and is a specialist in researching, diagnosing, and treating anxiety disorders. Finally, my new PCP listened when my husband backed up my explanations of why my sx didn't meet criteria for anxiety! At that time, the TTT was scheduled. ROFLMAO ... now that's one I hadn't heard of ... what a great idea ... Welcome to the board ...While I'm no expert on POTS, I did notice that you have an itchy rash. Have you been tested for celiac disease ? This can present as an itchy rash. It's called dermatitis herpeformus (sp?) ... Honestly, I've been calling it DH for so long I can't remember how to spell it. I'm 55 and based on the fact that I feel so much better gluten free, I'm assuming that I've had problems with gluten for most of my life. I started having blackouts at 2 years old and had a lifetime of petite mals. It wasn't until I was 34 that I became totally disabled with CFS/ME ... CFS is close if not the same as POTS ... FWIW ... you don't have to test positive for celiac disease to be gluten intolerant ... Based on my GI symptoms, I don't think I became a celiac until I turned 50. hth ... dizzy Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 26, 2011 Report Share Posted March 26, 2011 Welcome, Alison! I am sure you are getting a ton of info off of this forum. I wanted to mention about the tingling of the hands and lips--I know it can be a sign of "anxiety", something to do with the O2/CO2. But, it can also happen with hypocalcemia. And that could happen due to low vitamin D. When I had my thyroid removed a couple of years ago, I knew to expect a few days of hypocalcemia related to moving the parathyroid glands around and making them temporarily shut down. For those few days, my hands and lips would begin to tingle, and I would take a Tums(calcium) and wait 30 minutes. Most times it would go away, but I had to take them every few hours for a few days. So, I guess I just want for you to not let that symptom necessarily get categorized as "anxiety" or POTS.Besides that, it sounds like you might be a long-time POTSie! BTW, dizzy, the description of the rash made me think gluten, also! Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 27, 2011 Report Share Posted March 27, 2011 Hi,I wish you success (of course) I see that you are pulling out all the stops.My 2 cents is, be careful of "salt loading" while on fludrocortisone.'"keep us posted"! Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 27, 2011 Report Share Posted March 27, 2011 Welcome Alison! I,along with many others I am sure, laughed hysterically when you wrote about your husband coming into the appointment with you! Now that was funny stuff! I think just about everyone on here has been told they had anxiety. Especially in the beginning. I finally asked my husband to go with me and albeit he does not have the credentials that yours does he did try to get them to listen to us when we said it's not anxiety! When I found my cardiologist, whom studied with Dr. Grubb so she knows alot about this disorder, she apologized for all those docs and said please don't be mad at them they just don't know any better! It was so nice to hear that our anxiety like symptoms are one of a physical nature and caused my body functions going haywire. Do you know about brain chemicals and how the work on the body? I would love to pick your brain! :-)Thanks for sharing your story and giving me the best laugh I've had all week! KC Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 27, 2011 Report Share Posted March 27, 2011 Welcome Alison! Glad you are on your way to a thorough work up and figuring all this stuff out (as well as any of us can).Do you suppose you'd rent your husband out? I could see him having a very profitable career accompanying us POTS people to Dr. appointments to "watch our backs" for us. I know the cardiologist I saw at CC told me that she didn't think she'd ever seen a patient in their autonomic lab that DIDN'T have a diagnosis of depression and/or anxiety before they got to her. Sheesh!I always want to tell the docs that the only time I'm anxious is when I'm in their office, waiting for them to pronounce me as "having anxiety!" Good luck with your exercise program. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted March 27, 2011 Report Share Posted March 27, 2011 Welcome, Alison. I just wanted to let you know that with my severe POTS/MCAD symptoms, I have also had an itchy rash on my upper arms, as well as a rash around my mouth at times. Not sure what the cause is exactly, but they have improved. Keep us posted, and I'm glad to hear you're finding some treatment options. Quote Link to comment Share on other sites More sharing options...
ACB Posted March 28, 2011 Author Report Share Posted March 28, 2011 Dizzysillyak,Glad I could bring a little laughter to some peeps with my story of my husband's advocacy! It felt so good to have him and his expertise there to back me up.Thank you for warmly welcoming me to the message board!"While I'm no expert on POTS, I did notice that you have an itchy rash. Have you been tested for celiac disease ? This can present as an itchy rash. It's called dermatitis herpeformus (sp?) ... Honestly, I've been calling it DH for so long I can't remember how to spell it."Thanks, too, for your input on the possible cause of my rash! I looked up DH and I don't think that's it. My rash doesn't tend to have fluid filled bumps. It is more just like raised goose bumps that turn bright red at times and itch badly at times. No fluid, though. Hmmm. I was wondering about mast cells, but don't know much about them yet."I'm 55 and based on the fact that I feel so much better gluten free, I'm assuming that I've had problems with gluten for most of my life. I started having blackouts at 2 years old and had a lifetime of petite mals. It wasn't until I was 34 that I became totally disabled with CFS/ME ... CFS is close if not the same as POTS ..." I saw in your signature that you have been eating paleo for several months. I have recently become very interested in this approach to eating and have been learning lots about it. Awesome to hear that you've experienced improvements since eating this way! Quote Link to comment Share on other sites More sharing options...
ACB Posted March 28, 2011 Author Report Share Posted March 28, 2011 Welcome, Alison! I am sure you are getting a ton of info off of this forum. I wanted to mention about the tingling of the hands and lips--I know it can be a sign of "anxiety", something to do with the O2/CO2. But, it can also happen with hypocalcemia. And that could happen due to low vitamin D. When I had my thyroid removed a couple of years ago, I knew to expect a few days of hypocalcemia related to moving the parathyroid glands around and making them temporarily shut down. For those few days, my hands and lips would begin to tingle, and I would take a Tums(calcium) and wait 30 minutes. Most times it would go away, but I had to take them every few hours for a few days. So, I guess I just want for you to not let that symptom necessarily get categorized as "anxiety" or POTS.Thank you for the warm welcome to the forum! Thanks, too, for the info on hypocalcemia. I read a bit about it and will certainly keep it in mind. I need to review my labs to see if my calcium has been monitored. I saw that petechia can be a symptom of hypocalcemia. I've wondered if the red bumps I have from time to time could be petechia. That's something I need to show my new cardiologist. Maybe they'll reappear in time for my upcoming visit! Quote Link to comment Share on other sites More sharing options...
ACB Posted March 28, 2011 Author Report Share Posted March 28, 2011 I,along with many others I am sure, laughed hysterically when you wrote about your husband coming into the appointment with you! Now that was funny stuff! I think just about everyone on here has been told they had anxiety. Especially in the beginning. I finally asked my husband to go with me and albeit he does not have the credentials that yours does he did try to get them to listen to us when we said it's not anxiety! When I found my cardiologist, whom studied with Dr. Grubb so she knows alot about this disorder, she apologized for all those docs and said please don't be mad at them they just don't know any better! It was so nice to hear that our anxiety like symptoms are one of a physical nature and caused my body functions going haywire. Do you know about brain chemicals and how the work on the body? I would love to pick your brain! :-)I'm so glad I gave you a good laugh! From reading the forum for several months while searching for a diagnosis, I knew that I should expect anxiety diagnoses from docs. It was helpful to know I wasn't alone in fighting them and pushing for an accurate dx. Nice that you got an apology from your cardio about misdiagnoses from other docs! It is no surprise to me that POTS is often misdiagnosed as anxiety by MDs. In my case, it seemed to be a three part problem. 1)My docs exhausted their knowledge and testing abilities to try to determine a cause. 2) They did not search outside the realm of their current knowledge (i.e., they didn't try to learn more). 3) They did not do a proper anxiety assessment. A person should never be given a dx without proper assessment. If I'd been given a brief self-report questionnaire, anxiety could've been quickly ruled out. I don't have the cognitive component required for an anxiety dx. This appears to be the case in many POTS pts - we have physical sx that are related to nervous system problems, but no cognitive sx. I do know some about neurotransmitters (brain chemicals) and how they affect physical functioning. I must admit, though, that POTS brain now rules my world and I have difficulty remembering and articulating my knowledge. I'd be more than happy to try to answer questions or at least point you in the right direction to find info about questions you might have! Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted March 28, 2011 Report Share Posted March 28, 2011 I too have had a rash/ raised itchy bumps mostly on my legs, feet and lower thighs. Sometimes it appears on my torso. The doctor I was seeing at the time told me it was because of shaving. I told him that I don't shave my feet and I honestly did not shave 3 1/2 weeks prior....he had no reaction. I too have low blood calcium, low Vitamin D and low magnesium levels (sometimes). Just was tested for Celiac Disease but they sent my blood to an allergist too and I have a wheat & baker's yeast allergy. Hence, not a gluten allergy but wheat is in almost everything. Just started illiminating wheat so we will see how that goes Glad to have you on the site and best of luck to you Please keep us posted!!! And take care! Quote Link to comment Share on other sites More sharing options...
ACB Posted March 28, 2011 Author Report Share Posted March 28, 2011 Do you suppose you'd rent your husband out? I could see him having a very profitable career accompanying us POTS people to Dr. appointments to "watch our backs" for us. I always want to tell the docs that the only time I'm anxious is when I'm in their office, waiting for them to pronounce me as "having anxiety!" My husband got a good laugh about your idea about procuring his services. I'm sure he would serve other POTS patients quite well in that role.I hear ya about feeling anxious about being called anxious! I started to feel that way when seeing new docs while searching for a diagnosis. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 28, 2011 Report Share Posted March 28, 2011 Alison,Can we chat in email? I like that better than personal messaging on here. My email is TheTrainStationMobile@gmail.comI look forward to chatting!KC Quote Link to comment Share on other sites More sharing options...
ACB Posted March 28, 2011 Author Report Share Posted March 28, 2011 I too have had a rash/ raised itchy bumps mostly on my legs, feet and lower thighs. Sometimes it appears on my torso. The doctor I was seeing at the time told me it was because of shaving. I told him that I don't shave my feet and I honestly did not shave 3 1/2 weeks prior....he had no reaction. I too have low blood calcium, low Vitamin D and low magnesium levels (sometimes). Just was tested for Celiac Disease but they sent my blood to an allergist too and I have a wheat & baker's yeast allergy. Hence, not a gluten allergy but wheat is in almost everything. Just started illiminating wheat so we will see how that goes Bwahahaha. What an amazingly helpful doctor! I'm glad you got some results from your blood tests and are making some changes that will hopefully help you. Good luck with the wheat elimination! Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 29, 2011 Report Share Posted March 29, 2011 Hi..It seems like doc always seek the easy way out. i am glad u finaly got the rigth diagnose. And that u have a huband that not only backs u up, but also have the background to say, no its not anxity....best of luck Quote Link to comment Share on other sites More sharing options...
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