southbel

So, I've gone and read some on MCAS/MCAD. I can seem quite a few similarities there. I know that Propranolol was very, very bad to me (stomach issues, no control of tachycardia, massive insomnia, headache, etc, etc) but thus far, the Metoprolol seems to have improved my tachycardia but not the adrenaline rushes. When you say that Beta Blockers made you feel awful, was it from more adrenaline rushes, tachycardia or what? Only thing that I have noticed while taking the Beta Blocker is that my blood pressure seems to jump all over the place from very low to quite high and often I have extremely wide pulse pressure. I'm in Charleston, SC and from what I've read on the thread, there's an MCAS specialist here at MUSC. Maybe I'll have my cardio consult with him - although they are at competing hospitals.

Would MCAS account for all the new allergies I seem to piling up of late?? That's another reason everyone is so fearful of giving me medicine. I've suddenly become very allergic to so many of them.

I've always been a thirsty person to the point I cannot go without some type of drink no matter what. Sometimes I get that cotton mouth, throat stuck feeling and water just won't get rid of it. For some reason, ginger ale helps when I get that.

Benadryl has always made me fall asleep in the past. I could try that and see if it makes a difference in the adrenaline nighttime episodes. It's odd because the stuff I get at night feels quite different than the tachycardia I get during the day (from standing, etc). The stuff at night makes my heart feel like a fish flopping in my chest and a real jittery feeling, but my 'regular' tachycardia feels like my heart is fluttering/racing with accompanying shortness of breath, dizziness, etc. So far my Beta Blocker has been okay at helping with the daytime tachycardia. Not great but much better than I was. This adrenaline thing at night though has proven resistant to the Beta Blocker and the natural route that my cardiologist suggested. A momentary rant here - I really, really, really hate this **** disease. My daughter and husband just went out to do our Christmas dinner shopping at the store. I was supposed to go. It was my task. And yet, I wasn't feeling well enough to go and I HATE it. I need to bring my daughter to the store so she can buy her father a Christmas gift. I have no idea how I'm going to do that tonight,. I want my life back, i want to be a good mother and wife. I want this to just go away already!!! Okay - rant over.

Thanks y'all! I had a miserable night last night and will talk to my cardio again. I get what he's doing and think he's a really great advocate but at the end of the day, I'm not flipping sleeping and darn it, I need sleep. It really makes a difference, a bad one, if I do not get sufficient sleep. He did say something about my epinephrine (or what is norepinephine??) levels or something like that and this is why I'm having that? I have the hyper form of POTS and from what I've seen on this board, the adrenaline rushes seems to be pretty common among that crowd. It does make me pretty angry that other doctor's reactions to my POTS has ultimately caused my cardio to have this reaction. I mean, really, what ever happened to do no harm?? I think labeling me as a nutter (which I'm assuming here) by the other doctors has caused me harm. Now, I'm pretty curious to find out what the heck my medical record says if my cardio is having such a reaction.

No, the only thing I'm on is the Beta Blocker. Cardio said that should help with the adrenaline. I think he's very sensitive to me taking anything that would be prescribed for anxiety because he keeps telling me, over and over again, that this is not in my head and is not anxiety. I imagine someone somewhere wrote something pretty nasty in my medical record since he seems so emphatic about it. Given some of the doctors I've seen just plain sucked, I can only imagine. At this point. I do NOT care if they can just get it to stop. It's just past 2 AM and here I am again with the shaky feeling, heart feels like a fish flopping in my chest, and just hating it. Oh and for the record, the Melatonin and Chamomile tea just aren't cutting it. Tea kinda made me nauseous actually.

Interesting. I've never really had my blood sugar monitored except when I was pregnant (gestational diabetes). I've never been one of those that can tell if my blood sugar is low or not but I know it's something I can test at home so it's worth a shot to eat a little something.

No, the only thing they've really tried are Beta Blockers. The first, Propranolol, did not agree with me at all. I know my cardio is pretty open to suggestions since he encourages me to research and find out what other POTS patients are doing. Thanks for the suggestion - I need something because this adrenaline thing is getting to me bad.

Not sure what I can do and neither is my doctor so seeking any advice. My cardio is a great guy but I've just not had a lot of relief and in the last two weeks, I have gotten substantially worse. My big problem now is waking up each and every night at 2 am with what I can only describe as adrenaline rushes (based on the descriptions I've seen here). It's an absolute misery and lasts for about three hours. I've noticed during these episodes each night that my blood pressure seems to go all over the place. I've tried no caffeine at all during the day, relaxation techniques, sleep hygiene, etc, etc. Nothing has seemed to help. I've been pretty much housebound for a few weeks due to both extreme tiredness from not sleeping and crazy tachy when I get up and around. So fast forward to today, I'm bringing my daughter into an ENT appointment. As I'm sitting there in the waiting room, I feel my heart start going bad tachy (~160). I am trying to stay very calm since I'm with my daughter and don't want her to worry. Go to text my husband to come to the appointment and of course I forgot my phone in the car! Luckily my daughter had hers with her. Texted my husband and he was there within 10 minutes. I really do love that man. Anyway, my cardio's office is literally across the hall from the ENT's and my husband told me to go over there, just walk in, and tell them what was going on. Apparently by this point, I looked pretty bad, pale with bright red splotches on my face - not very attractive. Surprisingly, they went and got the doctor right away and got me back as a walk in. As a side note, have to say that shocked me. Anyway, did an EKG and he said it was sinus tachycardia, which is the usual for me during one of these episodes. Only thing he could think of was to up my Metoprolol from 12.5 mg to 25 mg per day. Tried to get me a holter monitor but they were already gone for the day. Said for the evening adrenaline rushes, to drink Chamomile Tea and take 3 mg of Melatonin. Have any of you tried this? Did this help or do you have any recommendations? He wants me to call him in the morning to get the holter monitor and let him know how I'm doing. Of note, I tried one Unisom last week and it only earned me a trip to the ER because it made my tachycardia SO much worse. Seems since I started with POTS, I suddenly can't take medications without having a reaction. ANY help you can provide would be greatly, greatly appreciated. I really don't want to be the lame mom sitting on the couch all through Christmas and darn it, I need some sleep already!

I have had this way too many times. Just recently I had a pretty bad issue with this in the ER. Got a CT scan because my tachy causes leg pain and the ER was thinking blood clot. CT scan said it showed bilateral pulmonary emboli. Of course, now I'm pretty worried. Doctor comes over and says, you're fine, go on home. Do I get an explanation? Nope. Do I go home feeling confused and even a little scared? Yep. If he had taken the time to explain to me that a negative D-Dimer test ruled out the emboli even with the CT findings, perhaps I wouldn't have left so unsatisfied and upset. Nonetheless, my GP felt this still wasn't enough and ordered more tests just to be sure. I think our doctors owe us more, whether that means paying better attention, giving better explanations, or telling us more details.

I get this odd sensation like if the floor just dropped out from under me; I describe it as that moment you're at the top of a rollercoaster and drop down that first big hill. Other times, I get the feeling I just got off a boat. I get burning feet SO bad. I get a lot of pain and soreness in my thighs but do not have any issues in my arms and only occasionally do I get numbness in my hands. I completely 100% understand the inner tremor thing. Hardest thing for me to describe to someone else. If I try to talk during a bad attack, I can't even talk normal - I have almost a stutter or something. I feel like my tremor/shaking thing starts in my core and then just goes out from there. I usually only get this tremor when I have a very bad POTS day and major tachycardia problem. It's about a 50/50 if I pass out from an attack of this nature. I have brought these up to my doctors and most of them insist they can't all be related. I find that pretty unlikely since they literally all started the same day. My cardio understands it can be from my POTS but doesn't really know how to help with my other symptoms beyond the cardio related areas. He's really a great doctor and the only one I've found that even knows about POTS but I just wish there were more doctors that know about POTS and how to treat it. Oh and as a side note, one of my doctors tried to convince me that I unknowingly sprained my thigh muscle, thus causing the pain in my thighs, tachycardia, etc, etc. She kept telling me that I must be mistaken and the pain in my legs starts before my tachy incidents. I had to keep repeating over and over again that I get tachy first and leg pain after. That was easily the MOST bizarre diagnosis I had received thus far - she wanted me to stop my beta blockers and take 600 mg of Advil per day. Um no!

I take Metoprolol 12.5 mg once to twice per day. Also been told to add extra salt, extra fluids, etc. We're still trying to figure out the timing and dosage on mine. For some reason. the BB causes me insomnia but if I don't take it at the right time, I won't get relief of symptoms during my waking hours or I'll be up all night. On a good day, I have been able to get about 5-6 hours of improvement which is a huge leap forward from being nearly bedridden back when this hit me like a mack truck.

So pretty much, this article is blaming the patient. Can't figure out why we have POTS or how to treat it effectively?? This researcher's answer is to blame the patient (e.g. deconditioning, psychosomatic, hypervigilance, etc). I find that abhorrent.

I would love if that were true for all doctors but I have seen doctors that treat Mayo's opinion as 'gospel'. That is my primary concern with an article.

I so very much agree with your point of view. For me, I was lucky enough to have documented changes in my medical record that easily show the vast difference in my body pre-POTS and post-POTS. My POTS did not come on gradually, there was a clear demarcation line. Thus far, I have been able to challenge any doctor that claims it is either lifestyle or 'anxiety' due to my unique circumstances based upon my history. When they have all agreed that my symptoms would not come on suddenly due to either of those, they do, however, come up with some pretty 'interesting' conclusions instead (a muscle leg strain was the most 'out there' one thus far). It wasn't until I met my Cardio, who has experience in POTS, that I was able to understand the process and onset. It makes me wonder if diseases like MS, ALS, and others were labeled as 'psychosomatic' before they found out the processes and causes of these diseases. I know my grandfather had ALS and it took him years and years to get a diagnosis because it was relatively unknown. Up until that point, his symptoms were labeled as 'all in your head'. Of course, this is before ALS became well known. His life was considerably shortened due to doctors unwilling to look past their own assumptions and actually find out what was ailing him.

I can't say for everyone, but I did try this with my husband. His only went up about 10 bpm and then after a minute or less, settled right back down to where it was when he was sitting; right around 70 bpm. I can easily compare this to mine where, on a good day, it only goes up 40-50 bpm. On a more symptomatic day, it will go up 60 bpm or more. On the day of my TTT, I never reached 120 (it was a good day for me plus they gave me IV fluids first) but did go from 60 to 110. The doctor giving me the TTT claimed that was normal but my Cardio said that was highly diagnostic for POTS. From what I've seen, unless doctors are already familiar with POTS, they do not understand the criteria. I am lucky that my Cardio has quite a bit of experience in POTS....totally lucked out on that one!

Hmm...this is interesting as I just had a long conversation with my Cardio on this very subject on Friday. Turns out his previous partner was very interested in POTS and was a known expert on the condition; thus the likely reason I was diagnosed so quickly by him. He has been emphatic in each of my visits that I NEVER let anyone tell me this is 'all in my head'. He has seen too many cases, has seen the physical manifestations, and was able to see for himself my turn from totally normal to this state literally overnight,. I do fear, however, that I will not be treated appropriately by other doctors if Mayo is sending out the signal that this is largely psychological in nature. That is a very concerning development. He offered an opinion on why doctors do this however that I thought was interesting. He said the medical community is, naturally, filled with Type A, impatient sorts. He said that when you hear from a doctor 'there's nothing else I can do for you', that means the doctor has simply run out of patience, and you are just not worth the investment to try and decipher because you no longer fit a perceived paradigm that the doctor usually maps out for you in the first five minutes of your first visit. His suggestion was to be persistent because while there are doctors out there that largely want to blame psychological reasons, he largely blames this on a lack of patience. He also believes that anxiety is way too over-diagnosed, especially in women, due to the aforementioned reasons. He told me he has had several cases of people being told 'it's just anxiety' for years, only for him to find the medical reason for their condition once he actually did the appropriate workup. His belief is that women in particular are much more 'stoic' and it's largely due to their treatment from the medical community. I would suggest, if we encounter doctors that want to label our POTS as a psychosomatic disorder, then I would simply ask, have you, as a doctor, lost patience with me and my medical issues? I would think the answer or perhaps defensive attitude could be quite revealing. Quite frankly, I expected better out of Mayo.

I was thinking about this. As far as my family and friends, they've actually been very good in this respect. However, I think it's because I really do look bad. My eyes look kind of sunken into my head with huge black circles, I've lost quite a bit of weight, and my color is so pale. I think this is also why doctors have been so determined to find out why I am having this - I really do look pretty bad which is sometimes a bit odd to hear from people because who wants to be told they look like crap?? Only thing that I have noticed is that as soon as I got medication that allowed me to have a few hours of semi-normal, there seemed to be this assumption that I could just get back to my 'normal' self. For me, it's meant that I can actually sit upright, stand, walk around the house, etc but I haven't reached a real normal yet. Just allowed me to have a few hours of relief from my symptoms. I'm lucky that my husband is so very patient but I haven't had this nearly as long as some of you. I wonder what it will do to my relationships with friends and family if it continues on. This worries me and motivates me to find a cause, a cure, or something - anything really.

Thanks for the info kayjay. My endo has a policy to call people with their test results (even if negative) as soon as they're back. I'll have to ask him about that when he calls. Interesting though because I literally just had to get some bloodwork redone there recently due to a lab mistake. I had heard of lab mistakes but that was my first experience with one.

kayjay - my 24 hr urine I just completed was nothing but a plain ole container. I did keep it cold in a cooler. How does that affect the test if there is no HCL in the container?

Will do! I honestly doubt I have a pheo given it's rarity though but wouldn't it be nice to have something that can just be removed and bam - you're cured.

I get a similar thing. They tried Phenergan for the nausea but it just made me more tachy. I have started taking my beta blocker at night and it helps a ton with the morning but it contributes to my insomnia. So far, Xanax has been good for the insomnia and nausea when it gets bad but I don't want to make a habit of using Xanax either. I've been trying sipping ginger ale before sleeping to help with the nausea. Haven't figured out a natural solution for the insomnia yet. Before I started the Beta Blocker at night, I used to wake up in the morning with 100-110 resting heart rate that would shoot up to 160 on standing. Now, I only get up to about 120 on standing in the morning. That's a bit of an improvement - not perfect of course but feels a lot better.

What a timely thread. Just turned in my 24 hr urine because the Endo my Cardio sent me to is thinking a Pheo too. Statistically speaking, as rare as POTS is, I think the Pheo is even rarer and said as much to the Endo. I am starting to get doctor fatigue from them trying to find the root cause of my POTS so I don't know how willing I am to go down this Pheo trail. I also get high blood pressure on standing, causing this suspicion. I am just getting to where my meds are having some effect - I don't know if I want to have more doctors dipping their hands in there, so to speak.

Lately I have not been able to drive. When my POTS came up, it had some effect on my vision where I lost all depth perception so I became pretty darn clumsy on top of it. The eye doctor is trying to work on glasses to help with that and my Cardio is trying to help on the dizziness so I can get back to driving. It's one of the things that I miss the most and makes me feel the most 'disabled' for lack of a better word.

I really do appreciate all of your kind words. I will admit it, I am struggling right now. I feel so much guilt and sadness and anger - it's something that is not my usual. My normal self is that bit of smart ***, chatty, OCDish, problem solver type who can always laugh no matter what. I keep thinking I'm burdening my husband too much and letting down my daughter. I know they love me and I know they are here to support me but darn it, I was always the organizer of the family. I was the glue - the one that kept all the balls juggling in the air. So, in other words, total type A overachiever. This is hard for me to accept. And darn it, I want to smile more! I completely lucked into my Cardio. He's fairly new to the area. Before we got him, we went to some pretty unproductive doctors. Lucky for me, my husband was with me at all of my appointments and just was unwilling to accept some of their explanations (and he would say that to them!). He's kind of one of those silent types that has a bit of an impact when he does say something. He's my rock. I love that man. Drives him nuts because the only place I've ever been meek is in an exam room with a doctor - hence the reason he started going with me to the appointments. Before my Cardio, I had doctors tell me it was anxiety, stress, a virus, 'female' hormones (yes that was the exact term the male doctor used), snoring, and my favorite - a muscle strain (my husband and I are still puzzled at that one!!). They just built a new hospital near our house and my Cardio happened to be on duty one day I went to the ER there for my tachycardia. He was kind, patient, and wanted me to follow up with him. Circumvented my now fired PCP and saw him. He's been coordinating my care since then. So, in some ways, I am lucky. I need to recognize the silver lining when I see it! He tells me all the time that I'm too hard on myself and says every time - don't let anyone ever tell you this is in your head, this is a very real medical condition. I'm sure y'all know, that's such a validating thing to hear! Ah, I've rambled on here but I just wanted to express my gratitude for your support. I get worried I sound too whiny on here which is so very much the antithesis of my usual self. I have seen some significant improvement from the Toprol I am now taking although I'm not quite there just yet; another silver lining. I know one thing - I am getting doctor fatigue and I have a sea of appointments in the next few weeks. It's going to take a lot of my inner toughness to get through them all. I can say one thing about my Cardio - the man is thorough!