Aa
could this be dysautonomia?
I came down with a virus 11 months ago (suspected EBV) and since then have never felt the same. I ran a mild temp, had the usualy malaise and body aches for 4-5 days. I soon began having migraine headaches whenever I had to read small print, or be ina car for long periods. Prior to this, I never had a migraine. My balance was off, and a test revealed no abnormalities in my inner ear functions. My doc then suspected some type of CNS or ANS problem. Had a normal MRI (small meningioma found, but dismissed as a cause), normal blood tests, etc. Then everything seemed to hit....unrelenting faigue not relieved by sleep, nausea episodes, especially when it was hot last summer, and very lightheaded when standing or after exertion. It was like I had been short circuited. I went to Mayo clinic for evaluation, and they think it is just a post viral syndrome. From what I read about dysautonomia, it seems I may have it. My life has really been turned upside down over this.....any comment would be helpful!
Well, the frustration continues. Mato called the day before my follow up, and said there was really nothing else they could do. Since I am "borderline" on my results which would suggest more specific testing, they thought nothing more could be done, and to work through my local doc. Unreal. I explained to the assistant on the phone of my continueing problems, and that these are disrupting my life, etc. She said that even if it is true dysautonomia, it just has to runs its course. Wow...being left out to dry basically. Since my insurance will cover this, can't I insist on seeing someone???
Best Luck.
Post Viral Syndrome also has been called by some Chronic Fatigue Syndrome.. thou some would use the term Post Viral Syndrome for the first couple of years of the illness which some do recover from.
After a couple of years.. this is always then called CFS. (If you were a female quite possibly you would of been told you have CFS. There seems to be a discrimination thing which goes on to do with CFS with women getting the diagnoses more easily then men).
Dysautonomia is just one of the many things which can happen with CFS
Post Viral Syndrome also has been called by some Chronic Fatigue Syndrome.. thou some would use the term Post Viral Syndrome for the first couple of years of the illness which some do recover from.
After a couple of years.. this is always then called CFS. (If you were a female quite possibly you would of been told you have CFS. There seems to be a discrimination thing which goes on to do with CFS with women getting the diagnoses more easily then men).
Dysautonomia is just one of the many things which can happen with CFS
you just described exactly how I felt when my first doc told me this was all from anxiety. I knew in my gut that the cause was something else. I'll look forward to hearing how it goes.
This is all so helpful. The anxiety question is logical....although I think this is a result of all of this happening versus a cause. Being so dog dead tired is so strange to me, like every ounce of energy is gone by days end. I have had a couple of pre-fainting spells in the past month or so, all from laying to standing...again, never happened to me prior to the illness. Also, very heat intolerant this past summer, causing nausea and headaches like I have never felt. Again, this is all so strange. My gut tells me that this illness, EBV, somehow short circuited me in order to have all of this out of whack. I so appreciate the responses...I will report back after my visit to mayo this thursday. God bless!! Bret
Don't get too anxious about the Tilt Table Test. I am never dishonest with people about it. The fact of the matter is that it is unpleasant. After all, it is designed to bring about your symptoms and demonstrate them for the physician in a laboratory setting, if indeed the source of your symptoms is autonomic dysfunction. HOWEVER, that being said, we all have to do unpleasant things in life sometimes to get what we want/need. Otherwise my Mt. Laundry would be all the way to the ceiling and I would be *buying* clean socks every week. :-p The thing to remember is that this test is completely safe. You will be very securely strapped to the table, so in the event that you do faint, you will not fall. If you faint, they will immediately lower the table back to lying down position and end the test. They will be continuously monitoring your EKG, and either the cardiologist will stay in the room with you or be right nearby in case s/he is needed if anything "interesting" goes on with your heart rhythm. If you've never fainted before and you're scared of what that might be like if it happens, take it from a frequent fainter, fainting all the way is actually less uncomfortable than being stuck in that limbo of pre-syncope (almost fainting). There's really nothing to fear from a TTT. Almost everyone on this forum has been through a TTT and we've lived to complain about it! :-p And several of us have been through more than one!
In answer to your question, yes a virus (especially a prolonged virus) can lead into dysautonomia. You may want to ask the neurologist for a referral to the autonomic neurology department at Mayo or a referral to an EP cardiologist (electrophysiologist) who is familiar with autonomic dysfunction and can help rule it in/out. Mayo is great with dysautonomia, but that doesn't mean that the neurologist you're seeing is particularly knowledgeable about it; each doctor tends to get hyper-specialized in their own little niche and doesn't always know the details of what goes on in other subspecialties. So you may need to see a neuro there who specifically sub-specializes in autonomic, or possibly a cardiologist who specializes in orthostatic intolerance/syncope (almost always those are EP cardiologists).
One final note—if you do elect to take antidepressants to help cope, you may need to taper off of them and have them discontinued by a certain time prior to any autonomic testing you have done; several classes of antidepressants are used to treat autonomic dysfunction, and generally speaking, antidepressants have enough nervous system activity to potentially skew the results of some ANS testing. At the very least, make sure you tell them of all medications you are taking and ask if they are okay when you schedule any tests; the actual lab techs are the best people to answer these questions in most instances because sometimes a secretary will mistakenly give wrong information (unless you can get the doc him/herself on the phone).
I hope you will keep us updated,
I'll keep you in my thoughts,
Heiferly.
In answer to your question, yes a virus (especially a prolonged virus) can lead into dysautonomia. You may want to ask the neurologist for a referral to the autonomic neurology department at Mayo or a referral to an EP cardiologist (electrophysiologist) who is familiar with autonomic dysfunction and can help rule it in/out. Mayo is great with dysautonomia, but that doesn't mean that the neurologist you're seeing is particularly knowledgeable about it; each doctor tends to get hyper-specialized in their own little niche and doesn't always know the details of what goes on in other subspecialties. So you may need to see a neuro there who specifically sub-specializes in autonomic, or possibly a cardiologist who specializes in orthostatic intolerance/syncope (almost always those are EP cardiologists).
One final note—if you do elect to take antidepressants to help cope, you may need to taper off of them and have them discontinued by a certain time prior to any autonomic testing you have done; several classes of antidepressants are used to treat autonomic dysfunction, and generally speaking, antidepressants have enough nervous system activity to potentially skew the results of some ANS testing. At the very least, make sure you tell them of all medications you are taking and ask if they are okay when you schedule any tests; the actual lab techs are the best people to answer these questions in most instances because sometimes a secretary will mistakenly give wrong information (unless you can get the doc him/herself on the phone).
I hope you will keep us updated,
I'll keep you in my thoughts,
Heiferly.
by the way... I also had a positive EBV level in that round of blood work my doc did. He said it was no longer active but I understand many people who have dysautonomia have also had EBV in the past.
Mine started the day after a root canal of an abscessed tooth. I had tingling and numbness on the same side of the face as the root canal. The next day I had it on the other side of the face. A couple of days later I felt it in my right foot. the next day my left. As it moved up my body I began having these episodes of lightheadedness as if I was going to pass out. They were very alarming as all I could think about was taking my next breath. These were followed by my heart racing and hyperventilation. I had many of these pre syncope episodes which led me to the hospital.
They did lots of tests on me (MRI of Brain & spine, Spinal tap, 24 hr urine, Stress Tess & Echo, etc.) and found nothing wrong with me. My primary doctor discharged me and told me I just had anxiety and that I should go see a counselor. I did, but that didnt help. The symptoms got worse after going home.
A few weeks later I switched primary care docs and by that time I had developed new symptoms (bad headaches, extreme hypersensitivity to light, sound and touch, severe fatigue, etc.) He said I had fibromyalgial but that my case was complex and that there appeared to be multiple things going on. He wanted me to see a cardiologist who specialized in EP to rule out Neurocardiogenic syncope (via a tilt table test.) He also wanted to run more detailed blood work and have a sleep study done.
When I read about the TTT I knew I would have a positive test. That being said, I was quite anxious about doing the test. I was reassured by several people that it was safe and I hoped it would shed some light on my case. Sure enough, I had an episode in the first 5 minutes of going upright. (I've heard that is not common but I am not sure.) Two days after the TTT I was rushed to the ER again because I was having Tachycardia upon sitting for 5 mins or more. My heart rate would go from 70- 140 (sitting) - 160 (standing) After a week in the hospital with more tests and new medications (Flurinef, meteprolol, and Cymbalta) I was sent home with a somewhat stable BP and HR. I say somewhat because I have to monitor it almost constantly now. If I am late taking my beta blocker my HR jumps anywhere from 30-50 bpm upon standing and if I exercise or do much activity my BP bottoms out. (ie: last night it got as low as 57/40.)
There is not a doctor who specializes in autonomic disorders here in the Tampa Bay area of FL so I wish I were as blessed as you to already be seeing folks at Mayo who can help you get answers pretty quickly. I'm looking at a possible 3-4 mo wait.
I suspect for me there is some underlying primary diagnosis that we have not yet found and I'm still getting tests here. After the sleep study they found i also have sleep apnea. While in the hospital they confirmed I was having atypical migraines as well.
In August, before the root canal, I had no symptoms. I am a CEO of a local IT Security and Management company and a mom of 4. I went from operating at a very hectic pace to not being able to function much at all. I have not driven or worked since the end of September and honestly getting a better handle on my health is more important for me than returning to work. Fortunatetly, I own the company and have people there who can run ti while I'm on medical leave.
A couple of thoughts for you:
1. You know your body better than any doctor. What is your gut feeling? Do you suspect it is anxiety or do you suspect there is something more going on?
2. If you are not satisfied with what the doctors are telling you, move on quickly until you find ones that will help you.
Hope that helps. Praying for you from FL
They did lots of tests on me (MRI of Brain & spine, Spinal tap, 24 hr urine, Stress Tess & Echo, etc.) and found nothing wrong with me. My primary doctor discharged me and told me I just had anxiety and that I should go see a counselor. I did, but that didnt help. The symptoms got worse after going home.
A few weeks later I switched primary care docs and by that time I had developed new symptoms (bad headaches, extreme hypersensitivity to light, sound and touch, severe fatigue, etc.) He said I had fibromyalgial but that my case was complex and that there appeared to be multiple things going on. He wanted me to see a cardiologist who specialized in EP to rule out Neurocardiogenic syncope (via a tilt table test.) He also wanted to run more detailed blood work and have a sleep study done.
When I read about the TTT I knew I would have a positive test. That being said, I was quite anxious about doing the test. I was reassured by several people that it was safe and I hoped it would shed some light on my case. Sure enough, I had an episode in the first 5 minutes of going upright. (I've heard that is not common but I am not sure.) Two days after the TTT I was rushed to the ER again because I was having Tachycardia upon sitting for 5 mins or more. My heart rate would go from 70- 140 (sitting) - 160 (standing) After a week in the hospital with more tests and new medications (Flurinef, meteprolol, and Cymbalta) I was sent home with a somewhat stable BP and HR. I say somewhat because I have to monitor it almost constantly now. If I am late taking my beta blocker my HR jumps anywhere from 30-50 bpm upon standing and if I exercise or do much activity my BP bottoms out. (ie: last night it got as low as 57/40.)
There is not a doctor who specializes in autonomic disorders here in the Tampa Bay area of FL so I wish I were as blessed as you to already be seeing folks at Mayo who can help you get answers pretty quickly. I'm looking at a possible 3-4 mo wait.
I suspect for me there is some underlying primary diagnosis that we have not yet found and I'm still getting tests here. After the sleep study they found i also have sleep apnea. While in the hospital they confirmed I was having atypical migraines as well.
In August, before the root canal, I had no symptoms. I am a CEO of a local IT Security and Management company and a mom of 4. I went from operating at a very hectic pace to not being able to function much at all. I have not driven or worked since the end of September and honestly getting a better handle on my health is more important for me than returning to work. Fortunatetly, I own the company and have people there who can run ti while I'm on medical leave.
A couple of thoughts for you:
1. You know your body better than any doctor. What is your gut feeling? Do you suspect it is anxiety or do you suspect there is something more going on?
2. If you are not satisfied with what the doctors are telling you, move on quickly until you find ones that will help you.
Hope that helps. Praying for you from FL
What were your main symptoms that lead you down this path? I have considered trying an anti depressant to help me cope with all of this uncertainty. I never really had ANY health problems prior to this deal, which makes this so hard to accept. It is so obvious that something is not right with me, and I need to keep moving forward to get a firm diagnosis. Then I can see about work, etc. for the future. How diffecult was the TT test for you?
Bret
Bret
Sorry to hear about your situation. H is right and that is good advice. I was diagnosed after switching to a new primary care doctor who said, "you need to be evaluated by a cardiologist who specializes in EP to rule out neurocardigenic syncope.". My first doctor told me that I had anxiety and that I should go see a counselor.
After twwo months of medial leave, not being able to drive or function I finally had a tilt table test which confirmed I not only had NCS but also POTS, two forms of dysautonomia.
Many blessings and I will pray for you. Let us know what happens.
After twwo months of medial leave, not being able to drive or function I finally had a tilt table test which confirmed I not only had NCS but also POTS, two forms of dysautonomia.
Many blessings and I will pray for you. Let us know what happens.
I do in fact have a follow up at Mayo this coming thursday with a neurologist that was one of my appointments. He thought my blood pressure was a bit low (104) but not alarming so. Had adrenals checked, sed rate, cell counts, etc. Infectious desease just thought this was something that would run a course...but for this long? I feel so zoned out at times, like my head is not getting enough of something. I plan on being really firm with this neuro, and to go down the path you mention. I have had 2 balance tests, and each indicate abnormalities but not via the inner ear. That to me is a red flag, because I am (or was I guess) really athletic and competing in endurance races. Now I can't even think of something like that. I get the funny feeling that they are not sure about me, as they suggested a psycholgist visit as well. From what you are suggesting, I need to have some additional tests to ***** the CNS/ANS system. Can those systems get knocked out of whack by a virus like this?? I really appreciate your response!! Bret
Did Mayo do any testing that could have picked up on autonomic dysfunction such as Holter monitoring, ambulatory blood pressure monitoring, heart rate variability test, sweat testing (TST and/or QSART), tilt table testing, cardiopulmonary stress testing? Or, put otherwise, what testing DID Mayo do, and what were the results? What specialty/specialties were you seen by at Mayo (e.g. cardiology, neurology, immunology)? Did you mention your concern about dysautonomia, or was this something you only learned about after your evaluation at Mayo? Are you scheduled for any follow-up at Mayo and/or did they leave the "door open" so to speak for you to return if your doctors wanted you seen for any additional consultations or evaluations or if there were any further changes in your condition?
I hope that's not too many questions. I do think that your symptoms could fit with dysautonomia, but the problem is that the symptoms of dysautonomia are nonspecific such that the only way to really know is to test the autonomic nervous system specifically. Without some direct objective measurement of ANS function, there's no way to even speculate with any confidence level. The best I can say before getting more answers from you is that I wouldn't rule OUT dysautonomia from what you've said so far.
Hopefully through further conversation we can get more insight into your situation for you. Welcome to our community,
Heiferly.
I hope that's not too many questions. I do think that your symptoms could fit with dysautonomia, but the problem is that the symptoms of dysautonomia are nonspecific such that the only way to really know is to test the autonomic nervous system specifically. Without some direct objective measurement of ANS function, there's no way to even speculate with any confidence level. The best I can say before getting more answers from you is that I wouldn't rule OUT dysautonomia from what you've said so far.
Hopefully through further conversation we can get more insight into your situation for you. Welcome to our community,
Heiferly.
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