Please help with Dx

[Caty]

Thanks everybody for being there and please forgive my long explanation.

 I am 41 yo. mom of 4 and for the last three weeks I’ve been going through some scary symptoms. It all started with esophageal spasms. I’ve suffered from GERD and severe belching for many years, but they suddenly worsened and my esophagus started acting up. I took Nexium (which I had never used before) and experienced tachycardia at night that wouldn’t go away, anxiety and nausea. Went to the ER and all was normal except a heart rate of 130 and low grade fever. I stopped the Nexium but the tachycardia and pounding HB continued every night and every time I ate. I became extremely tired during the day. During meals I would feel full and nauseated after a few bites, my heart will pound or I would get tachycardia, and felt like I was exhausted. Lost 10 lb and had to get IV fluids.

 Now I have labs (thyroid) an echocardiogram, an endoscopy, gallbladder and pancreas all normal.

This is how it is right now: The moment my body relaxes to fall asleep the tachycardia begins and I get this reflex to swallow which scares me. I am anxious with sudden noises also. 

In the morning when I am awake the tachycardia stops but I feel nauseated, extremely tired and very anxious- thinking I may die soon.

If I stay in bed, symptoms are not as bad but they are still incapacitating specially after the meals.

The strange thing is that at night, after digesting dinner I have a surge of energy. I finally feel myself, the symptoms almost go away and I can think clearly. I feel so embarrassed with our friends that are helping us because at night it looks as if I was faking an illness during the day... they suggest anxiety or depression.

I read the symptoms of dysautonomia and they explain the way I feel. But how can I explain feeling well in the evenings?

 It is a terrible roller coaster because every night I think I am certainly getting better but the moment I am falling asleep the tachycardia comes back and the mornings are terrible.

Please tell me what you think.

[Pistol]

Hi @Caty - I am so sorry about all of your scary symptoms! I am not sure if I can be of help but here is what I think: I am sure you are seeing a GI specialist (?) so I would ask if there are any meds that help for esophageal spasms. Have you had your EGD yet? I know the feeling of feeling full and nauseated after a few bites of food and I was recently diagnosed with gastroparesis. I had a gastric emptying study which was normal but they claim I have it anyway because when we are fasting then the problems may not be as obvious. So - maybe this study might shed some light on those symptoms? --- The fast HR after eating is frequently seen in dysautonomia because the body sends all the blood to the stomach for digestion and that causes the heart to beat faster. Nausea is also common. I am not sure about the fast HR at night or the energy in the evening. But I am wondering if you are seeing a cardiologist? He/she might order a 24 hour holter monitor to see what is going on. This might also be helpful in coming up with a diagnosis. --- You mention weight loss - do you think you could tolerate Ensure or other liquid supplements to just keep you from loosing more weight? --- I hope your doctors will find out what is going on soon and you find some relief!!!!! Best wishes - get better!!!!

[Caty]

Pistol- Thank you so much for your reply! The gastro Dr. says all is nl. He guessed hypersensitivity after a viral infection, but this doesn’t explain the heart symptoms. The heart Dr. said heart is nl. That it looked like I was dehydrated.

Have you heard of anybody with dysautonomia having tachycardia through the night?

Does anybody feel better at certain hours of the day? Or this opposes the dx. Of dysautonomia?

What medication can I suggest the dr. to try? The worst is the terrible anxiety I feel in the mornings...

Please help!

[WinterSown]

You can tell your friends to knock off their attacks on you by saying it's anxiety, it doesn't help. Dysautonomia is a syndrome of swinging symptoms, you may not always experience your symptoms--or--they might flare and you have the worse day of your life. Anyway it happens, it is in your body and you are a unique person. Everyone of us experiences our symptoms in ways that are unique to ourselves. I think it's awesome that you have some respite in the evenings--you're less on your feet, there's less sensory overload and sounds, you're able to have a simpler time of it than outside for the day at work or doing chores. Enjoy the times you are feeling better and don't let anyone add to your anxiety by making you think you should be ill all the time and that if you are not you are faking.  I feel better very late at night, so much less sensory overload, I walk my dogs, do some chores, catch up on reading or youtube vids, whatevs. I love the late nights now. Concentrate on finding ways to increase the duration of time you are feeling better--with some trial and error you will learn what and when you can do more. 

 

 

[Caty]

Thank you WinterSown it is hard for me to accept this illness. Have you heard of recovery in a short period of time? How can I accept these changes?

 I feel so bad for my kids, there is so much I need to do!

...it’s easier to cry, feel desperate and mad than to fight it, be brave and force myself to keep doing what I can.... it’s just so hard!

[WinterSown]

39 minutes ago, Caty said:

Thank you WinterSown it is hard for me to accept this illness. Have you heard of recovery in a short period of time? How can I accept these changes?

My doctors focus on reducing my symptoms and their effect on my life.  Nutrition, medicine, exercise, and hydration will provide physical benefits; your reactions to them may vary because sometimes you find the magic formula right away but more often it will be trial and error while you learn to reduce your symptoms. How your symptoms effect your life is a parallel track in your care. Somethings you may have to give up but there is a world of experiences new and waiting for you to embrace. As an example, we can't go to busy museums or public events because sensory overload is a huge mega-trigger for me. But that didn't mean giving up going to museums or shows or getting out for a day--we just do it differently. Now we visit other museums and walk at rural parks or visit smaller local events. One of my most favorite tools is Roadside America which brings up local attractions with their maps--they are all delightfully wonderful, some oddly quirky too (fun!), but a lot less busy than the bigger museums or other venues. Your children may also benefit from the slower venues--less crowds and usually no waiting time at the bathroom is great for everyone. Another boon is that the slower venues are usually free to moderately priced. $uper for home or vacation.  

 

[Pistol]

@Caty -has any doctor told you that you have dysautonomia? I am just wondering b/c - especially with you mentioning an elevated temperature - there may be other conditions or illnesses that could cause your symptoms as well. You mentioned a viral illness?  Your symptoms have been present for a few weeks as you said in your post. Do not despair just yet - often we get better although it may take a while. Our bodies need a lot more to repair themselves than we give them credit for. 

[Steph2397]

@Caty have you looked into testing for other autoimmune diseases? Not to say that you have one, but they could be contributing to your problems. I used to have the tachycardia issue when I first laid down at night,  but I was able to calm down after a few weeks of checking my pulse obsessively and realize that it goes back to normal after a few minutes if I calm down. I also get the acid reflux issue, but it often makes my throat tight. Have you done a tilt table test or autoneuro test? I suggest you do those even if your heart doc says your heart is OK. My heart was fine on all board (EKG, Echocardiogram, halter monitor), but my heart rate only upon standing was the issue and it led to Dx of POTS. Since then, I've noticed major improvements. 

[KnickKnack]

On 9/24/2018 at 11:51 AM, Caty said:

Have you heard of anybody with dysautonomia having tachycardia through the night?

Does anybody feel better at certain hours of the day? Or this opposes the dx. Of dysautonomia?

 

I've experienced bouts of tachycardia at night before, to the point that I couldn't sleep because I could hear my heart racing in my ears. Eventually I made the connection that, for me, this particular event was mostly due to anxiety. When I don't sleep well, my symptoms get noticeably worse. So I was so concerned with getting a good night's sleep that I made myself nervous and my heart would race (which in turn made it hard to sleep!) Not saying this is the case for you of course, just the way I experienced it.

As for the energy changes, I have definitely felt that too! Even before I was diagnosed, I noticed that even if I was extremely symptomatic during the day (dizziness, fatigue, brain fog) I usually felt MUCH better in the evenings. Typically 6 or 7 pm until fairly late at night. It's strange, because I could be so exhausted and dizzy that I couldn't get off the couch most of the day and then evening would hit and I would feel like I could run around the block. Honestly, I dont know the reason for it.

Dealing with all these strange symptoms can be so confusing, but it does get easier as you learn what works for you. Once you have an official diagnosis, you'll hopefully have a place to start in feeling better. Feel free to ask any other questions! It helps to have some support and know others' experiences. 

I'll keep you in my prayers!

[Caty]

Thanks so much everybody! You are so good by sharing your experience and all you have learned along the way. 

I will have an appointment at OHSU in Portland at the Autonomic disorders clinic at some point. They say no sooner than a month. I was thinking about calling other specialists in Washington hoping I could see someone sooner...

A doctor recommended me to use progesterone cream at night. So I did last night and the tachycardia improved, and I wasn’t so anxious in the morning! I will continue to use it and I hope the effect will last.

Here in Eugene OR all specialists I’ve seen have suggested a weird virus messing up things and suggested waiting it out to get better. All labs and studies have come up normal including ANA for autoimmune.

My husband and I have checked BP and HR flat vs standing after 3min. My BP doesn’t change much but the HR always goes up more than 20beats. Would this make a Dx?

My biggies are the extreme weakness/my eyes refuse to open and nausea in the mornings...with anxiety and feeling of complete failure for not being able to care for my family... specially because we homeschool! And the sickness I feel after eating- eyes closing, palpitations, feeling of fullness.

As the day goes by I can get up for some time, do a few chores in the evenings... but I am not eating much because I dread it so... Getting weaker though.

 I was given Metoprolol 10 mg for the night tachycardia but have been afraid to use it... I hoped it would go away on its own... I used to sleep on my left side but now I can’t, it’s like the heart gets squished and doesn’t like it and I am forced to open my chest and sleep face up...

Please forgive me for complaining so... Many of you have had it much harder for years... this is all so new to me...

Blessings to all! Thank you for being there and caring!

 

[Pistol]

@Caty - don't be afraid to take the metoprolol. It can be of great help! If it makes you fatigued ( a common but usually temporary side effect) - I know several people who take it at night for that reason and it helps. I am familiar with being too scared to start a drug but if we don't try then we can not get better!

[yogini]

It is interesting that your symptoms/tachycardia occur at night while lying down.  While many of us have symptoms at night our worst symptoms are during the day and while in an upright position.  Hope you find answers soon.

[StayAtHomeMom]

On ‎9‎/‎26‎/‎2018 at 11:55 PM, Caty said:

Thanks so much everybody! You are so good by sharing your experience and all you have learned along the way. 

I will have an appointment at OHSU in Portland at the Autonomic disorders clinic at some point. They say no sooner than a month. I was thinking about calling other specialists in Washington hoping I could see someone sooner...

A doctor recommended me to use progesterone cream at night. So I did last night and the tachycardia improved, and I wasn’t so anxious in the morning! I will continue to use it and I hope the effect will last.

Here in Eugene OR all specialists I’ve seen have suggested a weird virus messing up things and suggested waiting it out to get better. All labs and studies have come up normal including ANA for autoimmune.

My husband and I have checked BP and HR flat vs standing after 3min. My BP doesn’t change much but the HR always goes up more than 20beats. Would this make a Dx?

My biggies are the extreme weakness/my eyes refuse to open and nausea in the mornings...with anxiety and feeling of complete failure for not being able to care for my family... specially because we homeschool! And the sickness I feel after eating- eyes closing, palpitations, feeling of fullness.

As the day goes by I can get up for some time, do a few chores in the evenings... but I am not eating much because I dread it so... Getting weaker though.

 I was given Metoprolol 10 mg for the night tachycardia but have been afraid to use it... I hoped it would go away on its own... I used to sleep on my left side but now I can’t, it’s like the heart gets squished and doesn’t like it and I am forced to open my chest and sleep face up...

Please forgive me for complaining so... Many of you have had it much harder for years... this is all so new to me...

Blessings to all! Thank you for being there and caring!

 

I would take the metoprolol. That is my go to med for tachycardia and heart palpitations. It was the first medication that really helped me. 10mg is a small dose so I wouldn't worry too much. I take 25mg twice a day. My dad was taking over 100mg a day for his A-Fib. 

I have the same issues about sleeping on my side. Sometimes I can sleep on my left sometimes I have to sleep on my right. I just kind of go with whatever helps me to go to sleep. A consistent sleep schedule can do wonders. 

I wouldn't worry about the eating thing unless you are losing weight. I barely eat once a day now. I just started eating when I was actually hungry. My PCP isn't worried and my weight is steady. 

Congrats on homeschooling. I homeschool my 2 boys as well. Personally I think it is a much easier thing to do. What curriculum do you use? I use an online based one and my boys are old enough that they can go through it mostly on their own with me just answering questions and grading. That is helpful for when I am not feeling well. 

20bpm may or may not get you the diagnosis. Depends on the doctor and I have notice my standing HR and my upright HR on my tilt table test were different. I stayed above 130 for the 45 minutes for my TTT but I was averaging 120 while standing. Diagnosing POTS is change of 30 bpm or more OR sustained HR of 120. So a lot can depend on your numbers and doctor. 

I remember when it was all new and scary for me as well. It gets better. Once you get your diagnosis and start to understand what is going on it gets easier. And my boys are very understanding of my limitations. 

[Pistol]

14 hours ago, Caty said:

My BP doesn’t change much but the HR always goes up more than 20beats. Would this make a Dx?

Currently  it is 30 BPM or above 120 BPM within/for 10 minutes of standing. If you do that in a TTT they consider that POTS. If you don't then you may be told something else is going on but some cardiologists will tell you you may have dysautonomia. 

[Caty]

Thank you, thank you, thank you!

 I feel like I can now try the Propanol without being afraid. I thought it was Metoprolol but it is actually Propanolol. Would this make a difference?

My BP is low, not high- around 100/60 and does not change much. What varies is the HR.

StayAtHomeMom, when I read that you homeschool too I cried and cried . I have 4 kids 16, 14, 10 and 3. The first and third work well on their own but the second has special needs and needs more supervision. The 16 yo does Homeschool Connections online and the 10 yo we pick and choose curriculum for every subject.

We’ve had friends helping me these weeks because I can’t function until about noon. I am thinking that the anxiety is making everything worse but again I am afraid to try anything...

Would you please share with me what has worked for you for anxiety? Is there anything mild that could just give me a little boost?

Perhaps like you all say, if the Prpanolol helps with the tachycardia at night, I will be able to sleep better and feel happier as a result.

You are all a blessing to me ❤️

[StayAtHomeMom]

4 hours ago, Caty said:

Thank you, thank you, thank you!

 I feel like I can now try the Propanol without being afraid. I thought it was Metoprolol but it is actually Propanolol. Would this make a difference?

My BP is low, not high- around 100/60 and does not change much. What varies is the HR.

StayAtHomeMom, when I read that you homeschool too I cried and cried . I have 4 kids 16, 14, 10 and 3. The first and third work well on their own but the second has special needs and needs more supervision. The 16 yo does Homeschool Connections online and the 10 yo we pick and choose curriculum for every subject.

We’ve had friends helping me these weeks because I can’t function until about noon. I am thinking that the anxiety is making everything worse but again I am afraid to try anything...

Would you please share with me what has worked for you for anxiety? Is there anything mild that could just give me a little boost?

Perhaps like you all say, if the Prpanolol helps with the tachycardia at night, I will be able to sleep better and feel happier as a result.

You are all a blessing to me ❤️

Propranolol did not work for me as well as my metoprolol does. But it is still a Beta blocker. It is supposed to be better for POTS and can be used as an anti-anxiety medication at low doses. It only stays in your system for a few hours at a time. Personally it effected my breathing (which is my number one symptom) so I was switched to my metoperlol. 

[Mbritt724]

On 9/24/2018 at 1:40 AM, Caty said:

Thanks everybody for being there and please forgive my long explanation.

 I am 41 yo. mom of 4 and for the last three weeks I’ve been going through some scary symptoms. It all started with esophageal spasms. I’ve suffered from GERD and severe belching for many years, but they suddenly worsened and my esophagus started acting up. I took Nexium (which I had never used before) and experienced tachycardia at night that wouldn’t go away, anxiety and nausea. Went to the ER and all was normal except a heart rate of 130 and low grade fever. I stopped the Nexium but the tachycardia and pounding HB continued every night and every time I ate. I became extremely tired during the day. During meals I would feel full and nauseated after a few bites, my heart will pound or I would get tachycardia, and felt like I was exhausted. Lost 10 lb and had to get IV fluids.

 Now I have labs (thyroid) an echocardiogram, an endoscopy, gallbladder and pancreas all normal.

This is how it is right now: The moment my body relaxes to fall asleep the tachycardia begins and I get this reflex to swallow which scares me. I am anxious with sudden noises also. 

In the morning when I am awake the tachycardia stops but I feel nauseated, extremely tired and very anxious- thinking I may die soon.

If I stay in bed, symptoms are not as bad but they are still incapacitating specially after the meals.

The strange thing is that at night, after digesting dinner I have a surge of energy. I finally feel myself, the symptoms almost go away and I can think clearly. I feel so embarrassed with our friends that are helping us because at night it looks as if I was faking an illness during the day... they suggest anxiety or depression.

I read the symptoms of dysautonomia and they explain the way I feel. But how can I explain feeling well in the evenings?

 It is a terrible roller coaster because every night I think I am certainly getting better but the moment I am falling asleep the tachycardia comes back and the mornings are terrible.

Please tell me what you think.

So sorry you’re going through all of this! I know it can be scary and so unsettling.  my dysautonomia symptoms actually started much like this, and they were all over the map and confusing in regards to times of day and such  

I think the falling asleep and night tachy is a very common symptom for many of us- it’s just that our autonomic nervous systems aren’t quite doing what they’re supposed to as our bodies settle down to go to sleep & it’s like they get stuck in a fight or flight mode. The same thing would happen to me in the beginning, but it would typically wake me up two hours after falling asleep... tight throat, racing heart... then I would be crazy anxious thinking “what in the world is happening!”.  I ended up being prescribed a sleeping pill for the first few months of my journey and it helped significantly... almost like my body needed to be “retrained” on what it was supposed to do at bedtime. That said, they did a 7-day holter heart rate monitor before prescribing anything, just to rule out any arrhythmias. Might be something to ask for next? A cardiologist or electrophysiologist would do that for you. 

One of my doctors has said that many times dysautonomia symptoms are triggered by varying levels of cortisol and hormones, so I’m wondering if the feeling better at night after dinner has something to do with that? Our hormones and cortisol levels change throughout the day & could be triggering changes in overall blood pressure or other ANS regulated things. An endocrinologist would probably be a great one to look into that!

[Mbritt724]

On 9/24/2018 at 12:48 PM, Caty said:

Thank you WinterSown it is hard for me to accept this illness. Have you heard of recovery in a short period of time? How can I accept these changes?

 I feel so bad for my kids, there is so much I need to do!

...it’s easier to cry, feel desperate and mad than to fight it, be brave and force myself to keep doing what I can.... it’s just so hard!

Amen to what @WinterSown said about your friends - people try to write it off but only YOU Know your body & dysautonomia can be so unpredictable! 

[Chaos]

Hi! Sorry you are having to deal with all this. 

I started having esophageal spasms early in my disease process and when I became super ill with all this, I too noticed that every morning would be horrible and by evening I would frequently think I had turned the corner and was better, only to have it all start over again the next day.  It reminded me of the movie Groundhog Day and was totally frustrating. I also experienced the challenges of trying to fall asleep when my heart would be pounding so hard and fast that it felt like it was actually rocking my body on my bed.

One thing you might consider is that if you have had a viral illness preceding all this,  some antivirals might be a consideration. Whether or not you can get your docs to prescribe them would be a whole 'nother issue. 

There was some research out of Columbia University a few years ago that showed that people who were sick with ME/CFS for three years or less had a different immune profile from those who were sick for longer periods of time. The theory was that your body fights whatever it is that the viruses are doing to us for about 3 years and then the immune system gets burned out and quits working as well.   At the time the study authors suggested that early access to treatment (like antivirals) might help prevent long term onset of ME/CFS.  (I bring this up because there is a significant overlap between people with dysautonomia and ME/CFS.)

It is hard sometimes to know what is anxiety and what is your autonomic system being so out of whack that it is making you feel anxious.  The same neurotransmitters are involved with anxiety as are involved with dysautonomia.  While I know that anxiety is real and certainly doesn't help anyone's situation, don't be too quick to assume that it is anxiety that is the cause of your symptoms.  I remember being told I was having panic attacks when I would wake up with tachycardia, palpitations and sweating a ton, even though now I think it was the dysautonomia all along. I never felt panicked particularly when those events happened, they just happened  out of the blue when I was sleeping. I didn't dream for years so that wasn't the cause of it either.

Good luck sorting this out. Hope you can get in to see some qualified providers who actually know what they are talking about.

 

 

[issie]

Have you tried raising your head up at night to sleep? Many of us find this helps.  For me, I also have sleep apenea.  Not only obstructive but central.  The lack of oxygen can create more tachycardia.

Also, mast cells tend to degranulate worse at night.  My POTS didn't get better until I addressed MCAS.  Some with MCAS have an additional seratonin surge at night and it wakes them up and gives a burst of energy.  This usually happens in mornings - but for some reason mast cell issue people have it happen twice in the day.  If there are mast cell issues - beta blockers can make it worse.

Issie

[Caty]

An update dear all:

I am taking Propanolol tid and the tachycardia and palpitations are under control. My Dr. also suspected MCAS so I started taking Zyrtec and that has helped also ( helped with the esophagus and am more awake and could sleep relatively better). But I have two days now of waking up at 3am and every hour after that feeling the same adrenaline high: increased HR, nausea, anxiety. Also the GERD is getting worse again... I wonder if the effect is wearing off or what. I tried Zantac ( suggested together with Zyrtec for MCAS) but I got increased salivation and esophageal symptoms.

These last couple of days also I have felt more jittery and hypersensitive to visual movement and sound. I jump with loud noises and have had daily BMs! Completely unusual for me.

Nothing has changed in meds or food.

Should I expect the disease to stabilize at some point? Some of you share that things get better and you can learn to know your body but at the same time it is commonly unpredictable...

Still feel so confused and teary all the time...

 

[StayAtHomeMom]

3 hours ago, Caty said:

An update dear all:

I am taking Propanolol tid and the tachycardia and palpitations are under control. My Dr. also suspected MCAS so I started taking Zyrtec and that has helped also ( helped with the esophagus and am more awake and could sleep relatively better). But I have two days now of waking up at 3am and every hour after that feeling the same adrenaline high: increased HR, nausea, anxiety. Also the GERD is getting worse again... I wonder if the effect is wearing off or what. I tried Zantac ( suggested together with Zyrtec for MCAS) but I got increased salivation and esophageal symptoms.

These last couple of days also I have felt more jittery and hypersensitive to visual movement and sound. I jump with loud noises and have had daily BMs! Completely unusual for me.

Nothing has changed in meds or food.

Should I expect the disease to stabilize at some point? Some of you share that things get better and you can learn to know your body but at the same time it is commonly unpredictable...

Still feel so confused and teary all the time...

 

I use Rolaids with gas relief chewable to help with heartburn. For me heartburn is the acid in the back of my throat. It gives good relief and my body seems to settle down as well. Not sure if it is the extra magnesium in or what. 

I have noise sensitivity so I understand that. I am now much more jumpy and my HR freaks out for a bit. I used to love loud music, now I can't listen to it very loud, and too much bass freaks my HR out too. A lot of what I do is just go with it, wait for my body to relax (sometimes requires laying down, but mostly I can meditate), and don't stress it too much. 

As your body stabilizes it will have a new normal for you. If you get new symptoms be sure to tell your doctor, but mostly the new symptoms will cycle and won't bother you for a while. 

Hope you feel better soon. I am sure you are relieved that heart symptoms are easing with the meds.