Dysautonomia (Autonomic Dysfunction) Community
PLEASE HELP -at a loss...
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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PLEASE HELP -at a loss...

I am a 24 year old who just a few months ago, had my world turned upside down. I began with flu-like symptoms, trembling, cold sweats, instability/fast heart rate. Symptoms continued throughout the day. The next day I went to ER treated for dehydration.

A day later symptoms continued and I went to a different Hospital where they treated me for anxiety- I have NEVER been an anxious person, quite the opposite. Symptoms continued with heart rates of 100-160 with feelings of near syncope/passing out. I ended up back in the er a week later because my hr went up to 180 & my whole body went into shock. They treated me for sinus tachycardia and began me on a beta-blocker and ativan to control my nerves. Cardiologist wanted to put me on a heart monitor for a few weeks to see what was going on. I was taken off of ativan and put on Xanax. Continued to have symptoms and tachycardia HR of 100-180 off and on and symptoms of feeling out of it and feeling very light headed persisted along with sharp heart pains/chest pains.

After the third week took me off of the beta-blocker because he didn't think it had anything to do with my heart. He said it seemed like it might be autonomic dysfunction and to increase fluids/salt intake/ & implement lower extremity strength training into my life. Ended up on Florinef because it was believed that I might have POTS. The first two weeks were great but after that I began having flu-like symptoms and tachycardia episodes a few times a day and for about two weeks lost 10 lbs, was unable to leave the house or get out of bed. My nerves were on edge.

I saw a neurologist for the POTS and he gave me some sort of autonomic dysfunction test and determined that my baseline tachycardia rises significantly upon standing but my baseline tachycardia lying down has gotten to 180. So it sometimes is postural and sometimes isn't. My blood pressure stayed within normal limits upon standing... So back on the beta-blocker I went to help with the high HR and try to get my life back. I am now on the third week of a beta-blocker & am beginning to have flu-like symptoms again.... Just not feeling right. As for now they have just said it is some sort of Autonomic Dysfunction- Could there be something else that they have not discovered, going on???
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1703392_tn?1307454100
Sorry to hear of your problems. I can't say anything about your condition, but I can tell you that I had a similar experience with a beta-blocker. I have been experiencing PVCs (palpitations) for several months and my cardiologist put me on metaprolol succinate 50mg per day. After 3 or 4 days, I had no energy and felt sick, like the flu. I thought maybe I would get usted to it, but after a 2 weeks I had enough and went off of it.

So the flu-like feeling could be a side effect of the beta-blocker. Hopefully they can find you a remedy without the awful side effects. Good luck to you.  
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Avatar_f_tn
Hi!  Did the doctor who put you on Florinef tell you to come back to get your potassium level checked? Florinef will reduce your potassium, which might affect your heart. Potassium loss can cause muscle aches and flu-like feelings. You might need to take a potassium supplement.
There are many possible causes for autonomic dysfunction. Is your doctor looking into more testing to find a cause?
Is your HR still too high on the beta-blocker, or is that improving?
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Avatar_f_tn
Thank you for the reply :) I have not had my potassium level checked since going off of the florinef one month ago. I began metoprolol er succinate 3 weeks ago and about a week after began having flu-like symptoms again. So Florinef & beta blocker has made me feel better for about a week and a half and then my flu-like symptoms come on with tachycardia onset.

My tachycardia is def. worse upon standing or changing positions but also races when I am lying down. They have taken me down to 12.5 only at night because last week I was getting low blood pressure, which in turn has gone up with just half of the pill. I will be seeing an internal medicine specialist at mayo this week and pray for answers.

Very interesting about the K levels.... I will have to ask the doctor if I need to take K supplements.

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Avatar_f_tn
Thank you for your reply :) Interesting to hear that the beta-blocker gave you flu-like symptoms..... In April I had the same flu-like symptoms and that was the onset of everything...... then again shortly after I began taking florinef and then after I began taking metorprolol er succinate for the second time. I feel like my body is just telling me through the flu-like symptoms that it has tried to overcome all of this but something is GOING ON!!!! Hopefully I get some answers soon because I am loosing my mind going from doctor to doctor with no answers at all.
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875426_tn?1325532016
Did they test you for pheochromocytoma with plasma free metanephrines, one of the best tests for ruling it out?  It's a rare tumor, usually on an adrenal gland that can cause things like tachycardia, headache, and sweating because of the catecholamines it can emit at high levels. When I had a doctor who suspected this (turned out I didn't have it), he wanted me on labetalol.  They really ought to rule this out and not just automatically go to dysautonomia if they have not properly done so thus far, especially in light of you having tachy while laying down.  
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Avatar_f_tn
Well....I think my gastroenterologist might be on to something. I have Crohn's Disease and had a CT scan with contrast last week of my abdomen and pelvis and what do you know....I have blockage and inflammation in my terminal ileum..... Inflammation-leads to being malnourished-leads to dehydration-leads to TACHYCARDIA.... I PRAY PRAY PRAY that this is a positive and possibly a dx.

I had very similar symptoms when I was dx when I was 12 with Crohn's (felt like I was having a heart attach, extremely underweight, trouble eating) I guess when you get older and your disease acts up it can lead to different symptoms and can definitely bring on anxiety. From day one in April my prior gastroenterologist said no way is this Crohn's related..... hmmmmm!!!!!! Fingers & toes crossed & pray pray pray.
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Avatar_f_tn
I hope you are right, and your gastro doc has found the cause of your symptoms!  Inflammation of your ileum can lead to malabsorption of B-12. You might ask your doc to monitor your B-12 for a few months, as you may need to get b-12 shots in future.

Hope your feeling better.
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875426_tn?1325532016
Dehydration can DEFINITELY cause tachycardia.  Did your GI doctor suggest IV fluids might be in order, if indeed you are suffering from ongoing dehydration?
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Avatar_f_tn
Yes they have checked my b12 a few times in the past four months and it has been fine. I do take b12 injections bc it's on the lower end. I have a colonoscopy and endoscopy set for next week. I had a ct scan the other day and they found something maybe scarring or infection on my right lung and scarring on my left? They said it was nothing to worry about but to see a pulmonologist??? Also saw an endocrinologist and they are wondering if it has to do with my parathyroid- I literally have all of the symptoms except fever. We have thyroid problems that run in the family. Hopefully they are getting somewhere. Although the lung has me a bit worried..... Any thoughts?
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Avatar_f_tn
Also meant to add my calcium was 10.9 te end of June but we thought it had to do with too many tums- have stopped the tums but as of two days ago my calcium level is still 10.2 too high!!! And I've read that it is never good to have high calcium and that it almost always shows that it is parathyroid issue????
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875426_tn?1325532016
I know you were addresssing Enzymelover, but hope you don't mind me sharing some.  Have you ever had TB testing?  I tested positive with both the tine and manteaux skin tests (exposed to someone in end-stages), and one of my x-rays shortly after that showed possible scarring, but called normal.   Could have nothing to do with your own situation, but thought I'd give it a mention.

Also, about 10.2... some labs would call that top of normal range, according to national institute of health's website, though labs vary.  But, you may want to ask the doctor if testing your parathyroid hormone level would be in order.  

Besides hyperparathyroidism, another thing that can cause high blood calcium is multiple myeloma.  But since your second number wasn't very high, your doctor may want to do some more calcium testing before starting to try to rule out causes of high blood calcium.
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Avatar_f_tn
Thank you for the insight :) Very much appreciated. I had my Parathyroid blood work done on Friday and it is one point above the normal level. My PCP does not think there is reason to suspect it causing this but I should hear back from the endocrinologist this week for further information. I seem to have so many of the symptoms.... so well shall see.  

I was tested for TB a few years ago and I was fine. The inflammation/infection that is possible that they found in the lung ct scan is thought to be from inflammation due to my Crohns inflammation in my terminal ileum/acid in stomach. I am having a colon/endo this wed and hopefully I can get some more answers :)

If the PTH level is normal to the endocrinologist then I am sure it is reasonable to check elsewhere for the high Ca levels.
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875426_tn?1325532016
Glad you didn't have TB!  Sent you a PM about Crohn's and lungs.
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Avatar_f_tn
Thank you!!! Yes, my Doctor said today that with the acid and inflammation with the Crohn's it is very likely to have caused the inflammation in my right lung-still thinks its nothing to worry about :) Hopefully. Again, thank you!
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875426_tn?1325532016
You're welcome!
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