daisy

Thanks the info....I have been searching for more info about mcad but keep coming across mastocytosis. Does anyone know if there is a "gold standard" of symptoms that are used to diagnose the condition? I don't flush often but my skin is ridiculously over-reactive. For example, yesterday my sleeves got wet while washing dishes and within five minutes it looked like I had poison ivy from my wrist to my elbow! These outbreaks do not seem to be related to what I am eating, they just happen randomly or if I touch or itch my skin or if external stimuli come in contact with it. Many of the symptoms I have attributed to my POTS over the years (like random burning in my skin like I have a sunburn but don't) are also symptoms of mast cell issues it seems. I am trying to gather as much possible so I can talk to my Dr. about all of this...... Thanks!

Hi Mack's Mom and thanks for replying, May I ask how you found out for sure you had mastocytosis? What tests were done? I believe you are right that Protonix is a proton pump inhibitor. I'm a bit confused about the whole thing but I think it is used to treat stomach symptoms caused by too much histimine in the stomach not necessarily to prevent it but I also read somewhere that there is a connection between the amount of stomach acid and the amount of histimine so maybe since going off it I am producing more acid and therefore more histimine - I don't know, I'm guessing here and just trying to find answers. All I can do is try going back on it and see what happens. As I type, I am breaking out again, all over my chest and burning on my back. Of course, when I read about it, I also read about the malignant type and that freaks me out a bit!! Anyway, I'm wondering how Drs. determine if you have it - bloodtests? Thanks very much!

Thanks for your reply cat lady! Were you prescribed Zantac specifically for your hives and skin problems?

Hello - It's been a weird week for me and I wanted to see if any of you share any of these symptoms. Since my diagnosis of POTS, I like many of you, have become ultra sensitive to meds. It's not unusual for me to break out in hives or a rash if I take a new antibiotic, or heart med or if I get stressed or overheated. I will have random itching often as well. But, last week I was sitting at the computer and just started itching like crazy. I then broke out in hives all over my body (from my ears to my calves). They lasted most of the night. Benadryl makes me hallucinate and because of other heart arrythmias I have I have to be careful with otc antihistimines. My Dr. called in Atarax which helped the hives but did knock me on my behind. Anyway, each day, I wake up with either no spots of just a few and get more and more as the day goes on. Sometimes, I will only get one (like the huge one in the middle of my forehead that made me look like a cyclops!) and other times I get a rash that is almost under the skin in several places. If I scratch or touch these areas even slightly they turn beet red and get much worse. I also have burning and stinging sensations all over my skin - like I have a sunburn but no redness is there. I realized that I had stopped taking Protonix a few weeks ago. I have been on this drug for several years for severe GERD. While researching hives, I came across the excessive mast cell issue. I saw that Protonix and other proton pump inhibitors are often used to help counter excessive histimine produced in the stomach. I am now wondering if going off the Protonix has triggered these attacks...???? I went to my PCP today and he suggested I go back on the protonix to see if things improve. There is no other obvious cause for these random outbreaks - I have not changed any detergents, soaps, cosmetics, etc. and my stress levels are no higher than normal. I have not eaten anything weird or different that I know of. I know people can develop allergies to things that never bothered them before but it doesn't seem to be linked to what I am eating. After researching the mast cell activation issue on this forum, it looks like there may be a connection to POTS. I read that many mast cells are in the stomach and that systemic mast cell problems can affect the stomach. Maybe the protonix was keeping all this under control without me even knowing it and going off of it after all these years made everything go haywire? I would appreciate any insight anyone can give me and hearing of others experiences with mastocytosis....Thanks!

All the best to you! Will be saying a prayer for an easy recovery!

Hello - I have had several surgeries/procedures in the last two years including the insertion of a loop recorder. I was blessed that I didn't have the major flare-ups after these procedures as many others have. However, your symptoms are exactly what I go through in response to other types of stress. If I have a really emotional day or am out doing something more strenuous than usual, I will get just like you are describing for several days. I don't know why I have been spared the bad flares after surgeries (and I've had 8) and others aren't. It's odd because I am allergic to so many drugs and usually do not respond well to medication but I do okay with sedating drugs and anesthesia. I guess my body just likes the hard stuff I also think though that my Drs. do a really good job of keeping me full of fluids and salt when I am under since they know my condition so well. ......hope you are feeling better very soon.

Hello - I do have experience with a calcium channel blocker - cartia. In Feb. I was taken off the Toprol, and flecanide (an anti-arrythmic I was on to treat afib and atrial tach) because I was building up a toxicity to the flec and the toprol didn't seem to be helping my POTS symptoms as much. I had been on the Toprol for about four years and we believe my body had built up a tolerance to it and it started REALLY lowering my bp despite the fact that I was on florinef as well. Anyway, we went through a period of re-testing to see where I stood. Everything was pretty much the same - still had definitive POTS and other atrial arrythmias. Because I wasn't responding to the Toprol as well and it was dropping my bp too low, my Dr. decided to try a calcium-channel blocker. For me, it has worked about as well as the Toprol without as drastic of a drop in pressure. I still have breakthroughs of POTS episodes but I had those on the Toprol too. It does a pretty job of controlling the tachy overall - still get flare ups but l also have other arrythmias to deal with that make treatment a bit more complicated. The biggest plus for me is it that it doesn't cause as many physical side effects. It eased some of my brain fogginess and I am not nearly as fatigued as I was. I used to feel like I was constantly walking through quicksand but I am more alert now. I also had horrible stomach problems which cleared up completely after going off of those meds. I don't know which one was causing the most problem, the Toprol, the flec or the combo of the two but I don't miss them at all. For now, my Dr. and I have decided to leave well enough alone and re-evaluate every so often. Bottom line is, my symptoms are controlled about the same with less side effects. Just my experience......good luck.

I thought that normal lymph nodes were pea-sized and could be palpable. My understanding is that they are always in chains along the neck - am I wrong about this? I have several that feel about the size of peas that I have been able to feel for years but never considered them swollen. I had one swell up like a golf ball in my groin when I was bitten by a tick so to me that was swollen. When you say swollen, do you mean that you can just feel them rolling around or are they really large? I had been told that it is not unusual to feel lymph nodes in various parts of our bodies around the size of a pea (sometimes elongated).....

Yes, I get those symptoms too. The shakiness and trembling you feel could be caused by your bp going so high. I also get what I call a "weak" feeling in my chest. The same sensation described as "butterflies" in our stomachs but in my chest. It's odd. I do think after exercise that those of us with IST and POTS experience more adrenaline surges. It is harder for our bodies to readjust to gravity when we stop and sit down. Part of the panic you are feeling could be due to the adrenaline but then I know for me, I used to panic because I was anticipating feeling panicked! It can be a viscious cycle.... As for the irregular heartbeat - if it is a consistent thing I would talk to your cardio doc (did you find one yet?) and see if you can get on at least a two week monitor. Arrythmias (most of them benign but uncomfortable) don't perform on command unfortunately. They can be hard to catch. You may be experiencing something when you are exercising that didn't show up on your tilt. 24 hour monitors are not always enough. Have you had a stress echo where they do the echo after you are walking on a treadmill? Hang in there - I know this is so frustrating for you and you want to get on with your life. If it is any comfort, you are in good company.

Hello, I have afib, atrial tach, ist and POTS. With my afib and atrial tach I often get "atrial runs". They can make us feel pretty lousy, even faint, but they are relatively benign. The problems occur when the heart doesn't go back into rhythm. As long as you aren't staying out of rhythm you should be okay. I would ask your Dr. though what type of atrial run it was, just so you know for future reference. PACs and PVCs are relatively benign. PVCs can be more concerning if they happen several in a row as they can turn into ventricular tachycardia but it doesn't sound like that is what is happening with you. They may be benign but they can feel really lousy.....

LindaJoy - I can't offer you too much advice but I can offer you my support and prayers. What you are going through must be just awful. It is so hard when we can't even take the medications that are supposed to help us. I hope it helps some to know that we are pulling for you and can relate to your pain. I hope you get the answers you need with your new Dr. Take care!

Yes, any time our hearts are involved it is very frightening and extremely unsettling. With time, I have realized that I am not going to die and have gotten much better at controlling the panic that automatically happens with my episodes. I also experience the same phenomenon you do after exercising. I can feel find during exercise but when I stop I know I'm going to have trouble for a bit. I remember reading a paper somewhere by Dr. Grubb saying that this is common. It has to do with our bodies having to readjust to gravity.......going from motion to being still, we have problems with that. Hang in there....

Count me in too! If I sneeze or blow my nose, I feel like I am going to pass out. Like the others said, my Dr. said it is the pressure being put on the vagal nerve....

Hello - I have POTS and other heart arrythmias along with NCS occasionally. It is not that uncommon for me to have a drop in bp when my heartrate is up and I've been on my feet for awhile although sometimes my bp gets really high. Lately, though I am noticing that my bp and heartrate are plummeting as soon as I sit or lie down. My heartrate goes down into the 40s and my bp often goes down to 85/47 or around there and of course I start feeling really loopy. Then, as soon as I sit up, bp goes back up (not always high - around 118/60s) and pulse goes back up to either a potsy level, depending on the day, or a more normal level. Sit back down or lie down, plummet again. It's an immediate drop, not gradual. I am currently on a calcium channel blocker for my heartrate (could no longer tolerate the beta blockers/anti arrythmics) and am about to go back on low dose florinef (whoopee...) but I don't think the ccb is what is plummeting my heartrate/bp...... Does anyone else experience this? I have had POTS for several years now and would have gradual drops when sitting or lying down but not these instant plummets. Thanks!

Hello - I have IST as well and also atrial fib, atrial arrythmia and POTS. There are some definitive triggers for my POTS symptoms (barometric changes, stress, humidity, being on my feel OR sitting long periods) but my other heart arrythmias do tend to come in clusters (my Drs. word). I'm not sure why this is.....It's not unusual for me to have short IST or other arrythmia runs on any given day for no apparent reason but nothing sustained. Then, out of the blue I will flare up and have problems very frequently over a stretch of time. I do notice flare ups with cycle changes (even though I've had a hysterectomy I kept one ovary so still have cycles). Unfortunately, other than increasing meds (which can make me feel worse) it's pretty much a grin and bear it time. I rest a lot and avoid as much stimulus as I can (which is easier said than done), stay overly hydrated, etc. It sounds like you're doing all the right things already. Dr. isn't exactly sure why it happens this way but it definitely does. Hope this cluster is a short one for you and you are feeling better soon!

Yes, if it is rainy and damp, I am pretty much useless for that day. My dizziness and head pressure are much worse and I am extremely symptomatic. My understanding is that it definitily is the change in the barometric pressure.