Aimes

Traci, I'm taking 150mg of Zantac and 10mg of Zyrtec in the morning. I feel like I might need a higher dose as I start feeling pretty bad every afternoon/ evening but I'm not comfortable doing that without doctor guidance. I'm a bit paranoid when it comes to meds. Issie, I would love to just schedule an appointment but when I call they say they can only see February's calendar and that the next one will open at the end of the month but they can't guarantee he will have openings. That's why I'm thinking it has something to do with me requesting the appointment but I don't know. It's confusing! I made sure they knew I am an existing patient though! Hopefully they'll get me in soon. I live in North Dakota and would love a break from the cold! Ha ha!

Hi all! I've followed this site for a while now but have just started posting the last couple of days! This site has helped me tremendously in my journey to get my body under control and I feel like I'm getting so close! Thank you all! Anyways, for my story... I've had POTS symptoms as long as I can remember. Growing up I was always tired, couldn't keep up with other kids, digestion problems, and always sick. When I was three I had a seizure and no one was ever able to explain why. Thank God it has never happened since. Every couple of years I will get a terrible illness/infection o some sort but doctors can never diagnose it. It will look and act like an infection but not actually be one. Very strange! My freshman year of college, I met my amazing husband. I was starting to gain some college weight so we bought a gym membership. My hubby was immediately concerned as I could not even jog a lap around the gym without sitting down. We went to doctor after doctor with all of them stumped. I had one failed catheter ablation which was a terrible experience! I then decided to go to Mayo in Rochester and was finally diagnosed! I tried every beta blocker and pots med out there but didn't tolerate any of them so I learned to just live with it! In 2010, I had my first daughter. The pregnancy was a little hard. My heart raced the entire time and we moved a week before she was born! Stressful! Regardless of all of that, I felt the best I had ever felt in my life! I was not going to go for a run or anything but I was living life and POTS was not even on my mind. The only problem I had was that I kept getting terrible sinus and ear pain but doctors could never find infection. Imagine that! ;-) Fast forward to 2012 and our second daughter was born. Things didn't go as well as the first time. When I got the epidural, my BP dropped to 60/45 and then it failed to give me any relief! After she was born things were going ok until November 9th when I had a gallbladder attack! Those make child birth seem like a breeze! I live in a rural area with few choices for doctors so I had to wait until December 3rd to have surgery. As soon as I woke up from surgery, I knew something was wrong. My legs felt terrible and my heart rate would go through the roof every time I even coughed. A week later I started having episodes every time I tried to eat (even just a bite). It was like a seizure and allergic reaction all wrapped up in one! I lost 25 pounds in one month and couldn't eat a thing. Christmas Day I had had enough and decided to start reintroducing food. There have been many ups and downs but I am eating real food again. I have to be careful what I eat but it's much better than broth! Currently, I'm still having a lot of crazy symptoms. Oddly, my heart rate and blood pressure have been pretty stable through this flare with the exception of a couple of episodes at night. I'm still dealing with horrible ringing ears, head pressure, bloodshot eyes, a sore throat that come and goes in three day cycles, awful cold sweats, digestion troubles, and tingling in my hands and feet. Some of my most pesky symptoms disappeared after I read about MCAD on this site and started taking Zyrtec and Zantac. I'm no longer dizzy, having the tremors, or having the flushing. I also contacted Dr. Goodman at Mayo in AZ. He was the one who diagnosed me in Rochester and he agreed to see me again. The problem is they told me he has no openings. I've been calling a couple times a week and they tell me to just keep checking. Has anyone had experience in Mayo's scheduling? I'm thinking I have to do this because I'm self-referred... Sorry this was so long but I'm hoping by sharing my story, maybe it will help someone else. The last couple of months have been such a struggle but this site has given me great mental relief and in site into what I might be dealing with. I had never heard of MCAD and I'm very hopeful that by getting it under control, I might get these symptoms to subside and maybe even avoid all of these weird "infections." So a big thank you to all of you and best wishes for good health!

I would think the emotional support a service dog could provide would be reason enough to pursue this! How wonderful to have a constant friend who always wants to help you, loves you, and never judges! But I'm an obvious dog lover! :-)

I've had it as long as I can remember. Sometimes, it fades and I barely remember I have it. Currently, I'm experiencing the worst flare I've ever had. I had a baby the end of September and then had my gallbladder removed December 3rd. My body did not like it!

I have also had a lot of GI issues and just this morning read an article about the role mast cells play in digestion and how SSRIs might help. The article focuses on depression which is obviously not the cause of our issues but I still found it interesting. http://www.medicalnewstoday.com/releases/134119.php The Effect Of Fluoxetine On Mast Cell Main Category: Biology / Biochemistry Also Included In: GastroIntestinal / Gastroenterology Article Date: 30 Dec 2008 - 1:00 PDT Mast cells are now recognized as "granular cells of the connective tissue", whose activation exacerbates allergic immune responses and as key players in the establishment of innate immunity as well as modulators of adaptive immune responses. The role of mast cells in the gastrointestinal mucosa is not only to react to antigens, but also to actively regulate the barrier and transport properties of the intestinal epithelium. In clinical studies, it has become clear that psychological factors, especially anxiety and depression, play an important role in gastrointestinal diseases by precipitating exacerbation of symptoms. Fluoxetine hydrochloride (fluoxetine) is a kind of selective serotonin reuptake inhibitors (SSRIs), which belong to a class of antidepressants used in the treatment of depression and anxiety disorders. The research team led by He-Shen Luo, from the Renmin Hospital of Wuhan University of China, investigated the effects of fluoxetine on mast cell morphology and rMCP-1 expression in gastric antrum in a rat model of depression. This will be published on December 7, 2008 in the World Journal of Gastroenterology. A Sprague-Dawley rat model of chronic stress-induced depression was established. Fifty experimental rats were randomly divided into the five groups: normal control group, fluoxetine + normal control group, depressed model group, saline + depressed model group, and fluoxetine + depressed model group. Laser scanning confocal microscopy (LSCM) immunofluorecence and RT-PCR techniques were used to investigate rMCP-1 expression in gastric antrum. Mast cell morphology was observed under transmission electron microscopy. They found that depression induced mast cell proliferation, activation, and granule hyperplasia. Compared with the normal control group, the average immunofluorescence intensity of gastric antrum rMCP-1 significantly increased in depressed model group (37.4 ± 7.7 vs 24.5 ± 5.6, P < 0.01) or saline + depressed model group (39.9 ± 5.0 vs 24.5 ± 5.6, P < 0.01), while there was no significant difference between fluoxetine + normal control group (23.1 ± 3.4) or fluoxetine + depressed model group (26.1 ± 3.6) and normal control group. The average level of rMCP-1mRNA of gastric antrum significantly increased in depressed model group (0.759 ± 0.357 vs 0.476 ± 0.029, P < 0.01) or saline + depressed model group (0.781 ± 0.451 vs 0.476 ± 0.029, P < 0.01 ), while no significant difference was found between fluoxetine + normal control group(0.460 ± 0.027) or fluoxetine + depressed model group (0.488 ± 0.030) and normal control group. Fluoxetine showed partial inhibitive effects on mast cell ultrastructural alterations and de-regulated rMCP-1 expression in gastric antrum of the depressed rat model. These findings will conduce to understand that chronic heterotypic stress may induce the immune responses in gastric mucosa. Treatment with fluoxetine can ameliorate pathological changes in gastric antrum of depressed rat model, suggesting that SSRIs are an effective therapeutic agent for some gastroduodenal diseases caused by psychological factors. Notes: Reference: Chen ZH, Xiao L, Chen JH, Luo HS, Wang GH, Huang YL, Wang XP. Effects of fluoxetine on mast cell morphology and protease-1 expression in gastric antrum in a rat model of depression. World J Gastroenterol 2008; 14(45): 6993-6998 http://www.wjgnet.com/1007-9327/14/6993.asp

This is like the story of my life! I often tell my husband that the guilt of being sick is far worse than actually being sick! I hate the burden it puts on those I love!

Many of your symptoms sound very similar to mine. Scoliosis, always cold, excessive sweating, dizzy, nauseous, it's like reading a list of my own symptoms! I recently was approved to see Dr. Goodman at Mayo Clinic in Arizona. He's a neurologist and I saw him back in 2007 when he was in Minnesota. I've heard that he has a new interest in Mast Cell Activation Disorder and that is what I suspect I'm dealing with. I'll let you know how it goes. Currently, I'm waiting for an appointment to open up as I'm told he is completely booked! Hopefully I'm able to go soon! I hope you also get answers soon! We need to get healthy! :-)

I'd like to chime in here and share my story. My diagnosis began with an electrophysiologist. He diagnosed me with SVT and after failed attempts at using every beta blocker known, suggested an ablation. This was a terrible experience for me. The procedure took nearly six hours, I didn't respond well to the anesthesia and had seizure like episodes and stayed awake even though I had anesthesia. I could not feel anything but was awake and talking the entire time (this tends to run in my family as my brother stayed awake during his appendix removal also). After the ablation, my heart raced 24/7 for three months. It was terrible trying to sleep with a racing heart. Thank goodness it healed itself and went back to my normal of only racing when I stand. After that I went to Mayo and was diagnosed with POTS and was told ablations are not good for Potsies. That all happened in 2007. I am now having a terrible flare after having surgery to remove my gallbladder and am suspecting MCAD. That would explain my terrible reaction to the anesthesia and the months of racing heart after the procedure. I don't share this story to scare anyone. I don't in anyway feel that the electrophysiologist did anything wrong or could be to blame for what happened. He is an excellent doctor. However, his specialty is on one area of the body. Many of us Potsies have issues with all of our systems. Our racing hearts aren't the actual problem, but a symptom of a bigger issue. Going to an electrophysiologist is not a bad idea. It was a critical step in my diagnosis. However, I wish I would have gone to Mayo before I had an invasive procedure done. Second, third, or fourth opinions are never a bad idea!

Ugh! I'm dealing with this same thing right now! I have a two year old and a four month old and have been having a major crash since having my gallbladder removed in December. There is no normalcy in our house right now. I'm soooo ready to be a mom again! One day at a time! :-)