Aimes

My experience with an ablation was not a fun one at all! Looking back, I wonder if some of my misery was caused by what I'm now suspecting is MCAS. The procedure was miserable! Six hours, flat on my back, and even after they gave me the anesthesia I didn't fall asleep. I couldn't feel anything but I was awake, talking, and remember the entire thing. I also had one of my violent tremor episodes shortly after they gave me the anesthesia (possible MCAS?). I stayed the night and went home the next day. The recovery was easy enough, not too painful. However, a few days after the procedure I developed constant tachycardia. My heart rate rarely went below 120, even at night. Beta blockers did nothing to help. Luckily, it corrected itself after about three months. It's been about eight years now and my POTS is still as bad as ever and I still experience PVCs. Not fun! I think for us POTSies, ablations aren't successful because our hearts are just a terrible symptom, not the problem. Ablations are intended for people with wacky electrical pathways. Our hearts act crazy in response to a bigger issue. Not saying that an ablation won't help some of us. If you have extra electrical pathways, it may be beneficial to have the procedure. I'm sorry if my story is scary! I realize I'm a minority and most people don't have the problems that I had. I was pretty devastated and traumatized at the time though. Especially when I later went to Mayo and they said I should not have had an ablation at all! I don't mean to be a Debbie Downer but I think it's important to be aware of the good and bad things that can happen with these procedures. I always just wish I had gotten more opinions before having an invasive procedure done.

I had an episode of this about eight years ago. My heart raced no matter what I did. It was triggered by a catheter ablation on my heart which was supposed to slow my heart rate. Beta blockers did nothing to slow it down. My husband jokes that we should look at side effects of meds and surgeries and just plan on them for me! :-) Thankfully, mine calmed down after about three months! Hopefully yours will do the same but in a shorter time! Try not to panic! I know easier said than done! I wish I had better advice for you but just have comfort in knowing you're not alone! I hope you're feeling better soon!

From what I've read, Mast Cell Leukemia is extremely rare. I wouldn't think a reaction to morphine and GI problems would automatically point to leukemia as those can also be symptoms of MCAS. It will be good to rule it out though. Deep breaths, happy thoughts. I hope all goes well and you get good answers!

Well, I have a good story. I had all four of mine pulled and was eating normal foods by that night (probably wasn't supposed to be). I had some swelling and a little pain, but it was controlled with OTC meds. I'm sorry for all of those who had bad experiences. I was lucky and only had to be numbed to have mine pulled. Both of my siblings had to have general anesthetia and have theirs cut out. They had a little harder time recovering but still nothing too traumatic. Good luck to you! I hope everything goes well!

Haha! Something like that. I know it doesn't really give anyone answers but I love when new discoveries are made! It keeps me hopeful! Maybe in my next life I'll be a scientist! :-)

Just an interesting article about autoimmune cells. Maybe this is a part of the puzzle to identifying why some people develop autoimmune diseases? http://www.medicalnewstoday.com/articles/257627.php

Yes I also have blood shot eyes now. I was also recently diagnosed with mild scoliosis! We have a lot in common! From what I've read, I really feel like I might be dealing with MCAS but we'll see what Dr. Goodman thinks! April can't come soon enough! :-)

Again, I'm so sorry to see others suffer with these symptoms! Kim, I've heard of the valsalva maneuver. Doctors suggested I try "bearing down" to slow my heart rate. This is going to be too much information again, but these aren't really the kind of bowel movements where you bear down. Ha ha! The things we talk about! I can't figure out if the bowel movement causes the episode or vice versa but the episode always seems to end shortly after. I also have vision issues with my flares! It's as if my eyes can't focus and my glasses provide no relief. But, like you, as soon as my flare calms down, my vision returns to normal. Joann, the bicycle pump is the perfect way to explain it! It's a terrible feeling! This whole flare just has me so baffled! Before, my main complaints were tachycardia and low BP. I learned how to manage them, avoid triggers, and was living a very functional life. Now, everything is different. High bp, episodes of bradycardia, muscle issues, digestion troubles, the list is never ending. I still pray that they will soon find a simple solution for all of us. Like a light bulb moment, "Oh, hey! Those POTSies are just missing a certain type of enzyme!" Ha ha! I won't hold my breath for that moment, but I do feel like researchers are getting closer. I'm amazed at how much they've learned since I was last at Mayo Clinic in 2007!

Ugh! I'm so sorry to see this problem in so many people! Again, not really a debilitating symptom, but really annoying! The twitching in my toe has slowed down a lot but is still there. Especially if I cross my legs. I've also still been dealing with a lot of episodes of muscle weakness/burning. It comes and goes. Some days worse than others. You've all given me a lot of things to bring up to Dr. Goodman next month! Thank you so much for your input! I've learned so much from this forum and feel like I'm on my way to a diagnosis after 27 years of searching! So, thank you, thank you, thank you!!!

That's interesting. I always have trouble keeping my iron levels up. In fact during my last pregnancy, my doctor had me on a triple dose of iron supplements due to iron defficient anemia. I haven't had my levels checked for a while though. I should probably get it checked regardless! Thanks for responding! What do they do to correct his iron binding compacity? I've never heard of that.

Bebe, sorry to hear you also struggle with these issues! I always hate to learn that other people struggle but find comfort in knowing I'm not alone! :-) "Push" was probably not the best term to use. I didn't mean it in a literal sense. More like pushing my limits. If I over-do it, so to speak. If I'm overly active during the day, I notice a lot of head pressure at night. Not necessarily a headache, but actual pressure. It manifests everywhere. In my sinuses, ears, and around my brain if that makes any sense at all! I can usually sleep it off and feel somewhat better by the next morning. That's why I feel as if it's an inflamation issue. If I rest, the inflamation goes down and I feel better. I don't know, just a guess!

I've mentioned this before, but this flare has been full of crazy new symptoms for me. I had a hectic weekend. I volunteer as a Wish Granter for the Make-A-Wish Foundation and we had our annual fundraiser this weekend. Followed by a baptism and my body is protesting! After the fundraiser, my joints hurt so bad I could barely walk. I've always had periods of hip and knee pain but it kind of runs in the family and doctors always blew it off as due to the fact that I grew so fast. Now I'm wondering about EDS. I can see a trend in our family. Anyways, I also had an "episode" on Sunday. It wasn't all that unusual for me. I was rushing getting ready for the baptism (because of the dumb time change), so I'm sure that's what triggered it. It was my normal tachycardia, stomach ache, cold sweats, all of which went away after a bowel movement (sorry for the tmi). Well, this time I decided to take my blood pressure during the episode and was shocked! It was 175/124! A few minutes after the bowel movement, it was back to my normal 105/60. I also had a weird experience yesterday. After this hectic weekend, my head has been feeling full of pressure. This is another thing I've dealt with a lot with this flare that I usually don't. It gets worse when I push things and I suspect it has to do with inflammation. I've already had a blood test that has shown inflammation in my body, they just haven't pinpointed where. But yesterday it was especially bad and after I stood, I had a moment where I was completely deaf. I could not hear a thing! I just stood there in complete shock. After what seemed like an eternity (but was probably only 30 seconds), it sounded like wind rushing through my ears and then my hearing came back. So strange! I've had non-stop tinnitus with this flare, but this was something completely different and scary! Has anyone else experienced these things?! I'm soooo anxious to get to Mayo next month! It can't come soon enough! :-)

This is interesting to me! When I was young, I got a very deep cut on my knee (required eight stitches) and didn't feel a thing. I didn't even know I had cut it until a friend pointed out the blood running down my leg (sorry tmi). For some reason, I just never really thought anything about it! I also feel like my skin doesn't feel heat. I have to be very careful running baths for my girls because the water never feels very hot to me. Another thing for me to ask Dr. Goodman about! Thanks for the info!

I would love to get back to where I was this time last year! I was also in a two year remission that came after I had my first baby. I don't know if it's related or not as I've always had ups and downs with my POTS, but I honestly felt the best I had in my life after I had her! My hubby jokes that we just need to have another baby! Ha! I'm going to strive to do yoga at least three times a week, eat mostly things that are beneficial to my health, and keep my mind calm. Basically, focus on controlling the things I can, since so many aspects of this are out of my control! I really have to work on the worrying aspect. I always worry about what my health will be like in the future, if it's already so crappy in my 20's. I also worry about my daughters having this, as we can see a bit of a genetic factor (I have it most severe). "Que sera, sera" will be my new motto! Whatever will be, will be! :-)

I stumbled across another article. It goes a little more in depth into the actual experiments involved. Interesting information! http://www.medicalnewstoday.com/articles/257319.php

Hmm... That's really interesting. I do sometimes wake up at night and feel as if I can't move my legs. I have to really concentrate and then it takes great effort to move them! It's a little scary and another new symptom with this recent flare!

Mine is also predominately the right side. My right ear has had terrible tinnitus for the past three months and the twitching always seems to be on the right. So strange. During my big episodes, my entire body goes crazy. Those involve severe tremors that last hours and are much different than these twitches. I agree that this forum is a life saver! It's so nice knowing I'm not crazy and being able to talk to others who can relate! Are you on any meds for Hashi? Have they been helping at all? I've been wondering about Hashi myself and am anxious to get tested in April. My TSH is always normal,too, but I have all the symptoms of it. Every time I go to the ER, it's the first thing they check!

I try my hardest to keep my normal daily routine though some days it's just not possible and I have to camp on the couch! It's a tricky balance. I'm afraid if I push it too hard I'll crash, but if I don't push it a little bit I'll get completely deconditioned and weak and end up bed-bound (which sometimes happens anyways). Ugh! Never an easy answer!

Oh great! It's always something isn't it?! Thanks for sharing Rama! Very interesting article!

That is some great info Darlene! Thanks for the link. Just another symptom that may be caused by a mast cell issue. Very interesting!

Thanks for the responses and sorry you both deal with this too. Again, its not really a debilitating symptom but it's very annoying! I'm still dealing with the twitching today, but it seems to have slowed down some. I've been icing my foot some as it now seems to be getting inflamed, but I'm not sure if the icing is helping with the twitching or not. I really don't remember injuring myself so I feel that this is another weird symptom for me. The magnesium theory is interesting to me also. I'll have to do some more reading on that! I have a hard time with the lyme topic. I guess you can call me a sceptic. It sure could be the case for some, but I seem to have been born with this illness and I highly doubt I had a tick bite as an infant. All theories are worth exploring though and more power to people if they can get relief from the lyme treatment plan! :-)

I swear, every day brings a new symptom lately! This last week I've been battling periods of extreme muscle weakness and an annoying twitching toe the last two days. The muscle weakness is most obvious in my arms. I couldn't even wipe down the table the other day! Not only is it difficult to make my arms work, it's also painful. The muscles burn like I've just done a workout! The weakness and burning comes and goes. Sometimes I can barely lift my arms, sometimes I'm flying my two year old around the room like an airplane! So strange! More troublesome than that is the new twitch I've developed. It's on my right foot and is the "ring" toe for lack of a better term. It twitches a lot! I couldn't sleep last night because it wouldn't stop twitching and today my entire foot and up into my ankle is sore from it! I don't recall injuring the foot at all. Has anyone ever experienced anything like this and any tips on how to get it to stop?! I'm going to Dr. Goodman at Mayo in April so I'll obviously mention it to him. I'm suspecting I may be dealing with an autoimmune thing, but is there anything that might help in the mean time? It sounds like such a silly symptom, but I hardly slept last night because of it and today my foot/ankle are sooo sore! Again, the joys of living with a mystery illness! ;-)

That is amazing! Congrats to you for all the progress you've made in such a short time! I hope you get more answers and are feeling good as new in no time!

So happy for you Kris! It's about time! I hope it continues to go well!

I'm so sorry you are having such a hard time! I'm sorry I don't have very much advice, other than vent all you want! It's so wonderful that we all have this safe place to vent our frustrations and concerns. You are surrounded by others who understand and sympathize! Keep your chin up and keep fighting. It sounds like you're doing an amazing job! I hope you have many good, healthy days to come! Amy