Achilles2323 Posted June 2, 2013 Report Share Posted June 2, 2013 So last night i had to call the ambulance again....hr went to 170when i took my bp it was 170 over 105 with a 135 heart ratemy body was shaking like i was freezing coldcalmed down after about 30 minutes to an houri am not really sure what to do during these episodes as they are fairly new to mei had 1 a week for the passed 3 weeksi feel awful the next day as well....and when it happens it feels like doom ...i know it sounds silly but its the worse feeling in the worldcan any 1 help me with this ?has any 1 ever had this happen 2 them ? and if so how do you cope with it ? doctors are looking into pheo and etcuntil then i am not sure what to do i cant keep calling the ambulance =/ Quote Link to comment Share on other sites More sharing options...
Hope Posted June 3, 2013 Report Share Posted June 3, 2013 Maybe fight or flight response? I was getting something that sounds similar 2 years ago. It was horrible. "Surges" would wake me up every morning at about 4:30am, then I would get horrible shakes for hours and then I would be completely worn out. My temp would be around 99 to 100. I didn't have a blood pressure monitor at that point because I hadn't yet been diagnosed with POTS and didn't know I had a blood pressure issue. I never did come across a doctor that understood what was going on let alone do something about it. My "then" primary care doctor told me I needed to see a psychiatrist to get better medication (I have now found a better primary). I started praying every morning while the surging was happening and it eased up and eventually went away. After researching what it could have been, it seems like my body was in fight or flight mode. My body had taken a hit from having a miscarriage, during the height of allergy season, and changing 40 something hormones. This was right before I was diagnosed with POTS. I noticed this didn't happen when I had an IV in me for some reason. If the IV was stopped the surges resumed. Weird. But that fight or flight mode can happen for whatever that body sees as an attack. Just an idea. I hope you find an answer soon! Quote Link to comment Share on other sites More sharing options...
Joann Posted June 3, 2013 Report Share Posted June 3, 2013 I am so sorry you are having these problems. I don't know what to tell you, except I have somewhat similar issues right now. I get those high surges and begin to sweat and feel awful and then after get the shivering and shaking. I have yet o find a doctor to help me. I had this a lot last year, was getting somewhat better and now the last month and a half it has been awful again. I am getting these surges and went to ER twice, but now I am trying to wait them out, since they really aren't able to anything about them.When they get that bad, I usually have to lie down and hope it passes. Are you on any bp medications, if so ask your doctor if he may suggest taking sometihing when this occurs. The one thing they have said is it is okay for me to take a 1/2 of additional bp pill when it happens. I don't think it helps a ton, but can at least maybe keep the bp from getting even higher.I am also having them rechecking for pheo, because mine seem to be triggered by certain movements, like bending. Hope you get answers and I hope I get them too. I get very bad pain in my upper abdomen on one side, in my back and in my neck when these occur. Not sure if this happens to you or not? Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 3, 2013 Report Share Posted June 3, 2013 Sorry this is happening to you right now. Are you drinking enough fluids? My son was having spells like this about two months ago. I started giving him some Gatorade about an hour before bedtime. This seemed to help him. The changing temperatures seem to really affect him and at night he always wants his fan on. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted June 3, 2013 Author Report Share Posted June 3, 2013 really appreciate all the info and help on herebut doctors are not sure whats going on =/they are gonna look into pheobut i am not so sure my self just know the feeling is awful thanks for all the support Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 3, 2013 Report Share Posted June 3, 2013 When I first started developing significant POTS symptoms, I would get surges like this. It's a very scary feeling. Hopefully your doctor(s) can rule out all other causes.There are other past discussions on this. Perhaps do a search for "autonomic storm".Here is one:http://forums.dinet.org/index.php?/topic/18656-what-does-an-adrenaline-surge-feel-like/?hl=%2Bautonomic+%2Bstorm#entry171348 Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 3, 2013 Report Share Posted June 3, 2013 Achilles,I had many such episodes since I got sick. To my disappointment all drs I've seen so far (including my POTS specialist) have told me they are panic/anxiety attacks. Now, 2 years after I became symptomatic I know they are not that - I've never been the anxious type. I believe they are either episodes of inappropriate adrenaline release or autonomic storms.What helps me - ice-cold orange juice - 1-2 glasses, cold temperatures, deep breathing, relaxing (I know it's hard but doable) and moving around.Back when I was on klonopin I used to take an extra dose (as per my dr's instructions). In time I realized that the klonopin was actually making things worse for me on so many levels, so now I'm off it completely (I did a 'proper' taper last year).I'm sorry you're dealing with this, and I sure hope your drs will figure out how to help you. Hang in there!Best,Alex Quote Link to comment Share on other sites More sharing options...
MarkA Posted June 3, 2013 Report Share Posted June 3, 2013 Are you on a Beta Blocker of any type? My Metropolal seems to help with these but i get them sometime with intense dreams or close calls on the road in the car. Yes they are very scary. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 3, 2013 Report Share Posted June 3, 2013 Mark, that is a valid point - I even forgot about it - yes an extra dose of my beta blocker used to help as well. But you should check with your dr before taking extra anything of any of your meds, just to be safe.Achilles,if your dr suspects a pheochromocytoma (which is a very rare occurrence, yet a possibility) you definitely want to get his input on the atenolol as to the best of my knowledge, pheos and atenolol do not mix well!Best,Alex Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted June 3, 2013 Author Report Share Posted June 3, 2013 http://www.mayoclinic.com/health/pheochromocytoma/DS00569/DSECTION=treatments-and-drugs Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 3, 2013 Report Share Posted June 3, 2013 According to the FDA: TENORETIC (atenolol) should not be given to patients with untreated pheochromocytoma.see the entire booklet on atenolol here: http://www.accessdata.fda.gov/drugsatfda_docs/label/2011/018760s028lbl.pdfAlso: http://www.drugs.com/pro/atenolol-tablets.htmlUntreated Pheochromocytoma Atenolol should not be given to patients with untreated pheochromocytoma.http://www.nlm.nih.gov/medlineplus/druginfo/meds/a684031.htmlBefore taking atenolol,tell your doctor if you have or have ever had asthma or other lung disease; diabetes; severe allergies; an overactive thyroid gland (hyperthyroidism); pheochromocytoma; heart failure; a slow heart rate; circulation problems; or heart or kidney disease.http://www.rxlist.com/atenolol-drug/warnings-precautions.htmTENORMIN (atenolol tablets) should not be given to patients with untreated pheochromocytoma.http://en.wikipedia.org/wiki/PheochromocytomaRegardless, a "pure" beta blocker such as atenolol must never be used in the presence of a pheochromocytoma due to the risk of such a treatment leading to unopposed alpha agonism and, thus, severe and potentially refractory hypertension.Hope this helps Alex Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted June 3, 2013 Author Report Share Posted June 3, 2013 Well then I hope its not pheo :/ Really dunno what to doThese attacks are horrible Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 3, 2013 Report Share Posted June 3, 2013 I know first hand how horrible these attacks may be, and I shared in one of my previous messages in this thread what helps me.Pheos are rare, but thy do exist, so I think your dr is doing the right thing by checking you for one.Hang in there and don't lose faith. Keep us posted.Alex Quote Link to comment Share on other sites More sharing options...
joyagh Posted June 3, 2013 Report Share Posted June 3, 2013 Metoprolol and Klonopin!I take Klonopin every night to prevent that. Kava Kava helps too.weirdly, all my urine and plasma adrenaline tests come back normal. (of course I'm taking beta blockers) Quote Link to comment Share on other sites More sharing options...
angelloz Posted June 3, 2013 Report Share Posted June 3, 2013 Hello,I want you to know that I understand completely, including the feeling of doom. I have had these several times. Deep breathing, drinking liquids waiting a bit helps some. I have been to the ER also really thinking I will not last until I get there. I think this usually happens with my episodes of high BP. Normally mine is too low. maybe the high surges are a shock to the body when it is normally low. I have been checked for a pheo also but the tests were negative. Hang in there. try to do things that take your mind off of your illness. I know sooooooo much easier said than done! Quote Link to comment Share on other sites More sharing options...
Tammy Posted June 3, 2013 Report Share Posted June 3, 2013 I still get these but they had been worse a few years ago. My EP said I have a hypersensative reaction to adrenaline. He prescribed a beta blocker (it took a few different ones to try before I found one that helped and it took a few months for it to really make a different) and also an anti-anxiety med to take when they happen (as needed). It is not anxiety but the anxiety meds do make a big difference for me so that my body settles down quicker from the adrenaline surge symptoms and I don't end up in the ER as they never could do much for me either. Quote Link to comment Share on other sites More sharing options...
dpeeps Posted June 4, 2013 Report Share Posted June 4, 2013 I get them too, so I feel for you. They are awful and very scary. I was tested for pheo- (adrenal) tumor which was negative. I kind of just have to wait them out. "Easy Now" tea by Traditional Medicinals has helped. They have a stronger version too: "Nighty Night" Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted June 5, 2013 Author Report Share Posted June 5, 2013 They are the worse ;/ Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 5, 2013 Report Share Posted June 5, 2013 Sorry you are still feeling bad. When do you go for test? Hopefully it's not too much longer. Waiting on test and doctor's appointment is no fun. Hang in there! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted June 5, 2013 Report Share Posted June 5, 2013 Not sure exactly where you live but I'm in NJ and started having adrenaline flares May 23rd and they've been pretty steady most days since then. No reason for the re-flare; my symptoms were 90-95% controlled and it just started happening again. I never really know what brings it on and I'm unsure on how to proceed. I do know that most of my tests were normal or just borderline for low blood volume. My only positive tests were anemia and low ferritin, low vit D, a positive ANA that was later negative and a low complement C3....all of which give me not too many answers. I have a very hypersensitive system to everything and sometimes nothing. I'm riding out the storm. Good luck Achilles. Just wanted you to know it's been a rough week on my end too ... it will get better, I'm sure Quote Link to comment Share on other sites More sharing options...
acgraham Posted June 7, 2013 Report Share Posted June 7, 2013 Hello all,I have a quick question. I too suffer from these adrenaline surges. It'll start with me feeling like I'm about to pass out and I'll lay down until that feeling passes. But then I'll start to shiver and shake, even if I'm not cold. My heart rate will still be elevated (100-120s) and my blood pressure jumps around (100-130s/50-80s). And I get these weird "wave like" feelings that come across me that make me feel like I'm still going to pass out. Sometimes I can walk the feeling off, but when it's really bad I just have to lay down and hope that it passes. My question is, is it weird that these symptoms continue even though I'm laying down? Shouldn't laying down help my body? It just worries me that laying down doesn't make the symptoms stop. Amanda Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 7, 2013 Report Share Posted June 7, 2013 Amanda,First off, welcome to dinet.As I said in one of my previous posts in this thread, I got most of these surges while lying down and they tend to last a while, despite my staying in bed. The only thing that I noticed to help with the shaking is walking around. I believe it takes a while for the adrenaline to wear off, that is why lying down doesn't really do much in these situations (that's just a personal speculation though).Sorry you're dealing with this.Alex Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 7, 2013 Report Share Posted June 7, 2013 I'm so sorry you are having to deal with this. I do hope that your dr.s can figure out something soon so that you can some relief. I too used to suffer from these quite often, in fact, these very episodes are what started my whole journey with POTS. I know how scary they are. The first time it happened, I had no idea what was happening and thought I was going to die right in front of my children. I'm 4+ years in and after many dr.s and medications, I seem to do better on Metoprolol (to control hr and bp) and Xanax (for anxiety). I take both 3x/daily and I double up my am Xanax if I know that I will be more stressed that day. It's been a while since I've had a severe attack. The worst is when I'm driving, thus I don't drive very much anymore.I definately know how you feel and they are quite scary. I used to lie down and read prayers and sing faith-based songs over and over in my head. I would pray as well. I would be absolutely exhausted after these episodes and many times fall asleep for hours. I would expect that many of us experience this due to adrenaline rushes as our body needs to recover from being overloaded for an extended period of time (kinda like after a seizure).I hope that you have good dr. that can help you figure all this out. Hope you get some answers soon.Best wishes for well being,Bebe Quote Link to comment Share on other sites More sharing options...
acgraham Posted June 7, 2013 Report Share Posted June 7, 2013 Thanks for the replies. Thankfully I have a Drs appt with a dysautonomia specialist in 2 weeks. I'm hoping she can shed some light on to what may be triggering them (they seem to occur around the same time of day) and what medications or other treatments may help.Amanda Quote Link to comment Share on other sites More sharing options...
dpeeps Posted June 8, 2013 Report Share Posted June 8, 2013 I can get them standing, sitting or laying down. Actually they are worse when I am sitting or laying. Similar to what someone else said, walking around actually seems to drain the adrenaline a bit. The tea I mentioned before mainly helps me to keep from panicking about what my body is doing to me!!! Traitor! LOL Quote Link to comment Share on other sites More sharing options...
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