Canadiangirl73

I really want to thank everyone for their answers. Issie: I don't know if I have MCAS on top of POTS. I did have to make major changes to my diet since I became intolerant to lots of foods. So now, I stick to a low starch and sugar diet, lots of fruits and veggies and protein. I also had to eliminate many toiletry products as I started to react badly to them. Bebe and Brethor: I did think of taking an extra Ativan as it calms down the CNS and hence, the SNS. That's why they don't want us taking any before a tilt as it would affect the results. Maybe I will try IF there is ever a next time I do find that other sources of stimulation make my system haywire: fluorescent light, flickering lights, violent, funny or tearjerker movies, etc. It is very unpredictable and that's what makes it so frustrating. So, Joan, Pumpkin, Chaos and Relax, I totally understand what you mean by getting easily overstimulated and having to retrain your ANS. Peace: You are right. I really do need someone who LISTENS to me. I saw many EPs and they all had conflicting opinions. I traveled 6 to 7 hours from my city to see a POTS specialist-EP who believed I had two distinct problems: arrhythmias and autonomic dysfunction. He wanted to do an EP study at a later appt. However, since my body didn't tolerate the trip well at all, my GP thought of asking (again!) one of the EPs I had seen in my city to perform one. Well, that didn't go down well. The EP, who lacks knowledge of autonomic dysfunction, said it was unnecessary since my arrhythmias, although varied and numerous, didn't warrant an EP study because of their nature and duration. And to add insult to injury, he told her I should go see a shrink!!!! I was speechless. I just couldn't believe that this guy was still hung up on the anxiety BS. I mean, I have sooooooo many results that point to dysautonomia, saw two psychologists who had me take all tests available and told me I wasn't anxious, but frustrated from not being heard and treated properly. Thing is, another EP bullied me, verbally abused me, was violent, belittled me, etc., and wrote nasty wrongful things about me in my chart, so how is a fellow co-worker of his supposed to not have a bias opinion? If I go to the ER, docs also read those things and I get treated very poorly. All that too after I have seen the POTS specialist-EP who told me EVERY POTS patient he ever saw had been told they were nuts and it is not the case. He told me this wasn't anxiety, never was and never will be, but my ANS being in sympathetic overdrive. Anyhow, so I am now supposed to travel to another city (closer) to go see another EP. Hopefully, this will be a fruitful appointment. Again, thank you all!

I am so utterly embarrassed to discuss this, but I'm hoping some people could shed light as to what happened and offer advice, help and empathy. Maybe some had the same thing happen to them and can relate and make me feel not so isolated and scared. So here it goes: whenever my husband and I try to get intimate I get real sick. This happened a few days ago: I got tremors, chills, nausea, sky high blood pressure that lasted for over 24 hours, low grade fever, and worst of all, severe arrhythmias. I am used to having some arrhythmias, but this was super scary to the point that we thought of calling 911. That same wacky scary heartbeats happened again 12 hours after the "triggering event" and I am now getting copious amounts of PVCs and what feels like runs of SVT. I had been doing real well for a Potsie and I was a marathon from where I was year before. I could clean, cook, stand in one spot and wash dishes, was sometimes even able to be on my feet for 8 hours at a time, etc. This is discouraging me to say the least. It feels like my body has way too much adrenaline since and can't get rid of it. My resting HR is at least 20 bpm higher since, I have tremors and chills every time after being upright, blood pooling, shortness of breath, chest pains, I urinate constantly (3 times in 40 minutes!!!), all the dysautonomia goodies. I just cannot understand how intimacy triggered such a relapse, especially since it was cut short, because of my irregular beats, hmm, hmm I guess my questions are: has this ever happened to anybody else? Why can I not get rid of this adrenaline? Why did I get, and still do get, irregular heartbeats? Should I bring this to my physician's attention? Also, I've been mostly bedbound since, which makes me mad considering I was doing so well, so I wonder if you think it's a good idea to push through this so my body doesn't lose what I had gained, if that makes any sense? I am on Metoprolol 12.5 mg tid, Ativan 0.5 mg once a day, and was about to start Mestinon but now am relunctant to in case it makes me even worse. I do have Long QT Syndrome, but read that that type of activity doesn't trigger irregular heartbeat for those afflicted by LQTS. I've had dysautonomia (POTS) since June 2011. My face is beet red while I'm typing this. So embarrassed!!!

Thank you very much for your answers. After reading up on the nutcracker esophagus, I believe this is indeed what I have. I decided to book an apt with my GP next Tuesday (UGH!) and bring it up. As far as the pressure in the blood vessels of the neck, well, I guess I'm relieved I am not alone to get this but sad it seems to happen to others with dysautonomia. I checked my BP yesterday. Everything was fine. However, I was sitting down at the time. I will check it again upright. I believe it could be related to my high standing BP, especially my diastolic. I did feel and look at my neck when this happens, and found nothing unusual. Guess it is yet another annoying sensation. Thanks again for your replies.

Hello All, So I've been getting this pressure on either side of my neck where the major blood vessels are, mostly after being upright. The pressure lingers for a couple of hours when I do rest. It is worse on the left side. Would anyone know what this is attributed to? Also, I had been doing really great (for a POTSIE) for quite a few weeks until late Sunday night. My husband fell on ice and injured himself Saturday, so I really had to step up to the plate. Well, overdoing it set me back a bit and now I have this incredible pain when I eat. It is like my esophagus can't manage to move the food down to the stomach. Fluids seems to have trouble trickling down also. It basically feels like when you take a large bite of food, don't chew it enough and then it pushes against the walls of the esophagus. It is so painful and remains for at least one hour after I've had something to eat or drink. The rest of my GI system seems to be slowed down as well. Has anyone experienced something similar? I HATE going to the doctor, so I'd rather ask on the Forum first. I'm going on 4 days of the esophagal issues and at least a month of the neck blood vessel pressure. Any advice would be appreciated. Thanks!

I'm sorry to hear you have this, but I guess it is easily treatable? Pardon my ignorance, but what causes this? Hope you get well soon.

I had that no later than yesterday in my left eye. I describe it as having make-up removal cream in my eye. My vision is blurry/foggy. It never lasts long though ( I think at the most one week and on and off) and it never is in the same eye. Have you looked at your pupils when this happens to see if they're the same size? If one is more dilated than the other, it could explain this annoying symptom. I empathize... As far as MS goes, I was told in 1997 that my optical nerve was as pale as a ghost. Have been having MRIs for different reasons since (last one in July 2012) and still no evidence of MS. Yepee! I understand your wanting a MRI to rule that out, but IMHO, it is probably good ol' dysautonomia. I'm trying to bounce back from the flu so I'm right there with you and Ben and Jerry. Take care.

I know you can wear a BP cuff for 24 hours. Has to be ordered by a doctor. If you want something that keeps track of your BP continuously, I was told by a physiotherapist there is a device that resembles an pulse oximeter but it records your BP.

Anxiety is sort of a "side effect" of POTS. By that, I mean the hormones that are responsible for anxiety are wacky in us. For most of us, our autonomic system is in sympathetic overdrive, which is the part of the ANS responsible for the "fight or flight". So we get the clammy extremities, nausea, sense of impending doom, etc. You will see many of people here on the forum have adrenal surges at night that cause them to wake up with those symptoms and wild tachy. In a normal person, the body starts releasing adrenal and cortisol around 2 am so they gently wake up. However, this is faulty in us. Either our receptors are too sensitive to those hormones or our bodies dump too much of them at once. As far as it comes to taking clonazepam before a doctor's appointment, well, I can tell you I was there for the first six months after onset. In my case, I needed to take it in order to tolerate the driving distance better (a relative was behind the wheel!) and try to alleviate some of my symptoms (mainly nausea). Also, I dreaded going because I felt my doctor was not receptive to my POTS diagnosis and if I got upset, Ativan would help a bit by keeping me calm and not send my heart rate through the roof because of my emotions. But things got better eventually for me. I think my ANS is a bit more in sync now.

Hi Cupcake, I'm in Ottawa too! I saw Dr. Morillo in July and was supposed to go back in November but got pneumonia so am now scheduled for early March. I will also be going to Mtl. You can send me a personal message if you want to talk more. I had been told by doctors that there were others in our city with this, but kinda nice to hear another Ottawan's experience. As far as being told to pretend to be healthy, that sure happened to me. I saw an internal med doc who told me:`'Call this POTS, call this my-heart-races-when-I-stand-up, call it whatever you want, but get on with your life! Your level of debilitation is out of proportion.' UGH

Thank you for your answers. I guess I should explain what's going on a little more. My HR can drop suddenly by 20 or 30 beats ( for instance, it started at 95 yesterday afternoon and ended up at 60 within 3 minutes and kept on dropping; needless to say I wasn't feeling well and sat down). It`s sort of the opposite of what usually happens with my vitals, i.e. that when I stand, it jumps instantly by 50 or 60 beats. Now, it instantly drops by several beats in seconds and I feel ill. So what scares me is that it doesn't seem to plateau but keeps dropping. I 'm seeing my doctor a week from today and will have to bring this up to her attention. I suspect it is related to my wacky ANS. As far as the BBs go, I cannot stop taking them. I also have Long QT Syndrome and many arrhythmias so the betas are a lifelong thing in my case. If it wasn't for my very low supine BP, the docs told me they would need to increase the dose to offer me more 'cardioprotection'. I haven't changed a thing in my diet: I avoid caffeine, spices, sweets, except for fruits, and most carbs (hypoglycemia issues now). P.S. : Last night I had chest pains and felt off so I checked my BP while standing: 98/84, HR 110. This is going to sound pathetic but I was happy to see my HR was higher. I just cannot make any sense of the yo-yoing HR and those pitfalls.

sarcoidosis, bed rest , lupus

Yes, I get different kinds of pain in my arms. My muscles can burn for days, so much so that I have a hard time typing or brushing my teeth, nerve pain (numbness, tingling, electrical shocks, etc.), and the most horrible one of all for me is the left arm pain accompanied or not by chest pains. The pain radiates under left collar bone and goes down my arm and up the left side of my neck and sometimes my jaw. Just horrible, because I think : 'OK. Heart attack or not????'. Guess if I had a real one I wouldn't be able to tell the difference and that's what scares me.

I find I'm always severely dehydrated in the morning and must drink a liter between 6 and 10 before I actually feel better. I also salt load as early as possible. It does help me in the morning. I have a real hard time getting out of bed if I don't drink plenty and eat salt in the am. However, I don't notice any benefit the rest pf the day even though I still drink like a camel who just crossed the desert and salt load. I did ease off the fluids and salt in the pm in the past and that's how I could tell it didn't make much of difference for the rest of the day. However, I stick to it in the hopes I won't wake up as dehydrated but it doen't help. I end up drinking at night sometimes.

Hi, I think the doctor is confusing POTS and Pott's disease, which is TB that affects the spine: http://en.wikipedia.org/wiki/Pott_disease Maybe it would be worth giving them a call back to clarify you have dysautonomia.

When I first got POTS, I would get the really bad adrenal surges that would last for hours around the same time every month. So after three months, I realized they had to be related to my cycle. I figured out that they get worse around ovulation time until a few days into my period. As far as SVT goes, I have had it often enough (documented via Holters and event recorders). All I can tell you is that SVT feels different than the sinus tach that comes with an adrenal surge. A few months after my POTS onset, I was in the hospital because I had an adrenal surge that sent my HR into the 170s. It wouldn't come down, so I went to ER. While I was there, it came down to around 110 and shot up close to 180 very quickly. The doctor rushed to my bedside and told me I was in SVT. Because I had had episodes of those before, I knew this was just fast sinus tach. Of course I felt horrible, but I could tell the difference. So I asked to doctor if he was sure before he gave me adenosine, and I did a Valsalva, which brought down my HR enough for him to see the P wave, if I recall correctly. At that point, the doctor gave up and said he had never seen anything like it and called cardiology LOL. All I'm trying to say, is that very quick sinus tach can look like SVT to some docs and that the sinus tach that comes with adrenal surges and SVT feel very different. When I have episodes of SVT, I can feel my heart is beating abnormally. Hard to explain, but I can. From what you"re describing, those sound like adrenal surges, especially since they interrupt your sleep and last long enough. I know they feel horrible and are scary. The Holter you're wearing will most likely shed a lot of light on what you're going through. Hang in there!

I hope everything went well and you will recover quickly!

Hi! So I've had POTS for over a year and a half now and had grown used to the way my vitals behaved: when I used to lie down my BP was low (90/60-100/70) and spiked when I stood up as did my pulse. My resting HR was in high 60s to low 70s and would be around 120-140 when standing. For about three weeks, things have been changing. My resting HR is consistently lower (not like the brady episodes I've experienced in the past), in the mid 50s, and my supine BP is now even lower (high 70s/mid 50s). What I don't understand is that my HR rarely goes above 100 upon standing anymore unless I do housework and even keeps dropping. The longer I stand, the lower it gets. I'm unbelievably confused and scared. I still get shortness of breath and major blood pooling issues (legs swell and turn red when I stand immobile), as well as chest pains and terrible hot flashes when I sit back down. I have been on the same dose of BB since June of last year (Metoprolol 12.5mg tid) which didn't use to control my HR much before. Can someone explain why my HR keeps dropping when I stand? I should add my BP remains somewhat stable whereas before the diastolic number used to get real high (100-110). I still get adrenal surges at night but without high tachy (except for once), as I posted about a month ago. I am puzzled to say the least. Is this a transient thing? Does it mean my dysautonomia is changing?

I have thermoregulatory issues also. I go through periods when I cannot get warm and my feet, hands and nose are so cold that they burn. Does that make sense? I can be cold for days and be unable to warm up. Even sitting in a warm bath doesn't help. It was the case last night. I was shivering so hard in the tub in spite of the water being hot and kept on shivering once I got in bed under the thick layers of blankets. I guess it is normal to get cold extremities when we get cold: the body shunts the blood supply from the extremities and the surface of the skin to keep vital organs warm. So the abnormal thing is feeling cold and not being able to warm up. I guess it is part of dysautonomia... I also get the opposite: horrible hot flashes. My skin turns red and very hot to the touch but I don't sweat. I feel like a Katy Perry song

I agree that slow and low is the way to go. Can be one of two things: this BB doesn't agree with you or the dose is too high. I had to try 1 CCB and 3 different BBs before I found one medication that worked for me. I tried diltiazem at first and wasn't able to build tolerance above 7.5 mg. Docs didn't believe me, but I felt drugged on that minute dosage. Then I tried bisoprolol, 1.25 mg, which dropped my BP dangerously low, and Atenolol, 6.25 mg. Again, it dropped my BP too low. I finally started Metoprolol, 6.25 mg, once a day. I stayed on that dosage for 10 days. I felt stoned for the first few days. Bottom line, I increased it slowly over the course of 8 months to my current dose of 12.5 mg tid. Don't rush and don't feel pressured by doctors to keep on taking a medication that doesn't suit you. I'd give it a chance on a small dose for a few days. If you still feel horrible after that time has lapsed, maybe you should get back in touch with your doctor.

I'm really sorry you are having such a hard time and I hope you have relatives or friends that can lend you a helping hand and offer you comforting words. As Alex mentioned, PVCs are benign. I can only speak from my own experience and relay what doctors have told me, but PVCs, in a structurally sound heart, are harmless. Just wondering if they checked your thyroid. In the post-partum period, it is not uncommon to have issues with the thyroid and that could cause PVCs. From what I've been told by my cardiologist and the EPs I saw, you need to have thousands of PVCs in one day for them to consider an ablation. And several thousands. When you think about it, a normal average heart (not that of a POTsie ) beats over 100,000 times a day, so even if you get 100 PVCs, it represents less than 1 percent of the daily beats. Very little. The Holter you are wearing will give the doctors an idea of how many you get in one day. I get all sorts of pesky beats and yes, I have noticed I get them more often when my hormones fluctuates like around ovulation and my period. It is not uncommon for women to get them when they hit peri-menopause, and during pregnancy (neither apply to me ). Also, they annoy me more when my other POTS symptoms are worse. Adrenaline can also trigger them, so as far as I'm concerned, I believe that is why I get them more when I'm really potsie since adrenaline runs in copious amounts in my veins. That being said, they wax and wane like anything else, for me anyways. Did you notice a certain pattern to them, meaning can you pin point a trigger or they come randomly? I sincerely hope you get to enjoy your baby as much as possible. ((((hugs)))) PS: For some reason, my computer doesn't allow me to break my thoughts into different paragraphs.

I echo what others have said. Medicine does make leaps, so don't give up! It is very thoughtful of you to try to spare your mother's feelings but by keeping up appearances, you must get tired. Also, as a mother myself, I can assure you your mother is already worried about all aspects of your life. That is just what mothers do! Your emotional well-being is no exception. I'm sure sharing your thoughts and feelings with her would only bring you closer and make you feel less lonely. As far as statistics go, well, that is just what they are, numbers. Doctors often rely on those solely and forget every person is different. A friend of mine very recently passed away. She also had a genetic disease from birth for which there is no cure: cystic fibrosis. She had a double lung transplant 16 years ago thanks to which her life was extended. Sixteen years is amazing considering those infamous statistics. Things that kept her going was her strong will to live and to never take no for an answer, even if that answer came from a physician. She lived her life to the fullest, within her limits of course, but she also allowed herself to sometimes complain about her symptoms. She knew who to share her sorrow with as well as her triumphs. That is therapeutic. Allow yourself to be yourself. Show all the facets of your personality and your soul, but do it around people who will give you compassion and understanding. No one, even well, is always cheery. That is humanly impossible!

Hi all, I was wondering if someone gets this too and could explain why this happens. For quite a few months now, I start belching when I'm upright and it doesn't go away for hours after I sit down. I notice it starts after being on my feet for some time, so my only theory is that there is not enough blood to my stomach and/or since I get short of breath I inhale a lot of air without noticing. I also get a very strong urge to urinate after being vertical for a while. This urge is very different from the normal urge to go and I urinate a lot after I sit or lie back down. Anyone has a clue?

I wear Mediven 30/40 waist high. Couldn't tolerate Sigvaris because as it turns out the higher compression stockings have rubber in them and I'm allergic to that. For me, waist high compression stockings do make a difference when it comes to pooling (paired with an abdominal binder). Thigh high keep rolling down and knee high do nothing.

I'm really struggling with symptoms of hypoglycemia lately. I have no way of testing my blood sugar right now, but when my glucose was done in the past, everything was OK. I have eliminated all sugar and carbs from my diet, except for fruits, and still see no improvement. I find myself eating very small meals every three hours or so to try to ease the jitters, nausea, brain fog, etc. I read beta blockers can alter the glucose metabolism in the liver and pancreas, so I wonder if they are not partly to blame.

Hi Naomi, As Issie said, diastole is when your heart relaxes and fills with blood. So the heart fills with incoming blood returning from the brain by the superior vena cava and from the body by the inferior vena cava. The heart fills following a cascade: pulmonary veins, left atrium, mitral valve and finally left ventricle. When the latter cannot be filled properly with blood, this cascade fails and starts a backflow process, regurgitating first into the left atrium. The fact your left atrium is unaffected is real good news. They also mentioned grade one diastolic dysfunction, which means it is mild. So, I wouldn't worry. Just wondering why the doctor didn't take the time to explain the results. It is unnerving they don't seen to think it is necessary to break things down for us. I often had to consult my GP to get answers specialists wouldn't give me. Hope this helps!