My Story

[Aimes]

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!

[misstraci]

Hi Aimes, welcome Nice to meet you.

Sorry to hear about your story and being sick for so long, mine worsened or started after my second delivery as well. Glad you are able to eat now, gosh, I'd hate that part. And glad the zyrtec and zantac are helping some. What doses and how often are you taking them? I'm thinking about trying some as well. Well good luck with your next appointment, hope that it goes well.

Traci

[issie]

Dr. Goodman is busy. I would try to get an appointment and then keep calling to see if there are any cancellations. It's not just because you are self referred. If you have seen him, you should be considered an established patient. They can look your records up.

Glad the MCAS things are helping. Dr. G is giving some of us GastroCrom and that has been a great help to me.

Issie

[Mydoggielovesme2]

Welcome Aimes, I'm new here too. Just so you know I am finally seeing Dr Goodman the end of March. I was referred by my Dr and still took 2 months to get OKed for appt, and another month and a half of me calling every day to get appt. So hang in there and keep calling.

[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!

[Aimes]

Thanks mydoggielovesme2! That makes me feel better and I will keep calling! If all else fails I'll just fly down there and knock on his door! Haha!

[boymommy3]

Welcome! I am pretty new here also, and this forum has been such a source of encouragement and education for me.

Your story is already an encouragement!!!!

There are several things about your story that are similar to mine. However, your head/sinus/ear pain/pressure symptom is what caught my eye the most. I have been having that for a while now and it has been totally freaking me out! It is by far my worst symptom presently. Of course, with POTS this is subject to change at any minute.

I finally went to the doctor last week because I just couldn't stand it any longer. I am going for an MRI next week but I suspect it's just POTS...honestly though reading that you have symptoms like that makes me feel more at ease.I have terrible anxiety and stuff like that sends me into a tailspin. I just posted about this on here yesterday because I was so weary from it. Several others posted that they have similar issues and that too, made me feel a little better about it.

I pray your symptoms will subside and you can get relief.

[issie]

Thankfully, Janie (his nurse) is wonderful and finds out what I need to know from him.

Issie

[Aimes]

boymommy, I'm sorry to hear you've been having these symptoms! They are miserable and scary! This flare has has me so confused! One of the strangest things is that I can't lay down! When I try to lay down and relax I get freezing cold, start to sweat, my head pressure gets worse, the flushing gets worse. It's so anti-POTS. When I had my normal POTS symptoms, laying down is what made me feel better. I've gone to the ER three times with these symptoms and even in the hospital I had to sit on the bed with my knees to my chest. My legs have even been aching because I've been standing so much. If I feel an attack coming on, I seem to feel better if I get up and pace the house. I can't figure it out. My best guess is that the movement is helping my body burn through some of this adrenaline? I have no idea! It's so out of my norm!

[Aimes]

Issie, 70s sounds wonderful! My hubby has family in Phoenix and they always have to remind us of how wonderful the weather is down there! :-) maybe I'll win the lottery and we can buy a vacation home!

[issie]

Better hurry. It's expected that real estate is about to go up again.

Issie

[Angela]

yeah issie, market is already going up and better go up again some more! bank says my house gained 10k equity in 1 yr and they don't even know about the improvements. but, in my opinion it's friggin unbearable june thru september unless you have access to a pool, cuz there arent many lakes. that was the hardest part of moving to az...no rain, no lakes, he*l, i had to pay to see a "lake" when I first moved to phx and that in itself astounded me....grew up in midwest where you only had to drive 20 minutes best to see water.

on another note, the tingling and tenitus greatly improved for me with h1's and h'2 's too, but, as a granulater if you suspect mcas you need to take aspirin or another sort of degranulator. I am not sure of the physics of it but I take klonopin which is a mc degranulator however it is a benzo and status'd highly addictive and possibly may contribute to long term memory loss (not sure I mind the latter lol). it helps me with adrenal surges so, 241.

[issie]

Not everyone can do the aspirin. It does degranulate the mast cells. But, the idea behind it is to have a slow release rather than a huge massive dumping release. These releases are what make us have the mast cell symptoms. It also helps with inflammation. Some mast cell people are trying to do the aspirin - especially if they are ones to have massive responses. I however, found that aspirin, even a small amount, made me feel so much worse. I use turmeric to help with the inflammation and it has a certain amount of blood thinning properties.

Most people with MCAS try to avoid meds that will cause a degranulation ---as it just keeps your body in an inflammed state. Might explain your high inflammation levels Angela.

Issie

[Aimes]

I'm a bit confused by the whole degranulation thing. Is the point of aspirin to make the cells release over a period of time rather than in one big release? I feel like I have a small handle on this as the big episodes have stopped. I did wake up in the middle of the night last night with an episode of sorts, but nowhere near the level they were. I woke up with intense head pressure. It literally felt like my head might explode, my ears were throbbing, and the tinnitus was so loud it was unbearable. My worst episodes have always been at night. By morning it was better. The tinnitus never goes away but it's not so severe this morning. It's not a cold. I've been to a doctor because of the sinus and ear pain and its not an infection. I'm thinking my mast cells are acting up at night and what I'm experiencing is inflammation related. But again, I'm only speculating. I also had an episode yesterday where my tongue swelled. It didn't affect my breathing but my tongue got huge and felt like it couldn't fit in my mouth. I only ate my normal foods so I'm not sure what that was about either. The joys of having a mystery illness! :-)

[boymommy3]

Aimes....so do you have MCAS and you think that's where all your head/sinus stuff is coming from or do you believe it could just be POTS related?

Like I said before, I am having very similar symptoms as you but I don't believe I have MCAS. I, also have been feeling today like my tongue was swollen or that it was too big for my mouth. I got up in the middle of the night and felt like my mouth/lips were swollen. I even woke my husband up but he said he didn't think so. I really do though, I could feel it and I felt like I could see in the mirror. It was gone this morning. I am also having a lot of muscle issues all over as well. It's all so unnerving!

You said earlier in your post about not being able to lay down. I kind of feel that way but I can lay down too. I notice the symptoms not matter what I am doing, however, I too often pace the floors. I also get very cold very easily and have a hard time warming up. I, too have some of the sweating issues. I don't think I really have the flushing feeling that I see the MCAS people talk about. I think mine is very minimal. I will feel like it sometimes or think I maybe notice it but it's never that bad. My mom did tell me the other day that my face looked flushed. I am just now trying to understand POTS so the whole MCAS thing is a bit of a mystery to me. It all just so crazy!!!

I can't seem to do anything for very long. Pace or lay still. I can't seem to be still period. Unless my hubby snuggles me up, then that usually helps me a bit.

[Aimes]

I have POTS and suspect MCAS. My flushing episodes are better now but my cheeks are still pink. People are actually telling me how good I look because I'm usually so pale and now I have color. I usually just smile and say Thanks. It's easier than getting into it all. I've had episodes like this before. They seem to target different areas of my body. This time it's definitely connected to my digestion. In college I had one that was connected to vaginitis. It was like a terrible yeast infection but there was no yeast infection. I went to a ton of doctors tried a ton of medications. Had some massive flushing episodes where I felt like I was self combusting. My skin was very hot to the touch but I didn't have a fever. I'm hoping MCAS might be an answer for me. We shall see. I'm so sorry you're also dealing with this but am comforted to have a symptoms parter! :-) We will figure this out! I hope you're having a good weekend!

[Aimes]

I'm also having the muscle issues. Episodes of extreme weakness, twitching, trembling, tingling, and a creepy crawly feeling that I can't explain! You're right it is unnerving!