Others out there with 'dysautonomia'

[aaronhome]

I was diagnosed with 'dysautonomia' 3 years ago after spending a week in a heart institute suffering from 2 heart attacks. I was 32 at the time and a picture of what "fit" was supposed to be. I had a very good job, 4 kids, and a loving wife. All of which I still have other than the great job. My onset occured after I got strep throat. I went 3 days with a fever of 103+ until I started getting blisters in my throat. At that point I felt it may be strep and decided to go to the local doctor to get an antibiotic to help protect my children. Shortly after I recieved the antibiotic I had what they feel was an antifylactic shock to it. This was severe enough that I had a heart attack. 12 hours after the initial heart attack I had another for no apparent reason. After a week of observation and testing my cardiologist diagnosed me with Autonomic Dysfunction. For the past three years I have lived with this as it has gotten slightly worse from time to time. My most prominent symptoms have to do with controlling my heart/blood pressure, and severe abdominal pain. There have been other occasional symptoms but none that have been problematic enough to speak on. I am on a lot of preventative medications for stomach and heart related issues. With that said I again had strep throat a week ago. The end result was a more severe bout with three heart attacks and a hospital staff with no knowledge of my condition. The staff would not contact my doctor and treated me with little respect like I was a druggy in there looking for a free high. The on call cardiologist told the nurses I was to only get vicodin for pain. I laid in the hospital bed during the first two attacks (spasms) while the staff closed the door to ignore any sound from me about the pain. After the second Troponin test came back at 18.2 elevated did they then start calling round and treat me with any form of respect. That is the hardest battle when dealing with something like this at a young age. No troponin test was done after the third and most severe spasm I have encountered. I am home now but suffering from severe headaches when I lay to rest for more than 3 hours. These are very severe and flow into my kneck and also disrupt my normal breathing while I sleep. I joined here to hear from others and find support from others that are dealing with the same dissorder. Thanks to all for having me here.

[Kessey]

I got great news and bad news on Friday.  I was finally approved for SSDI!! I had been praying and fighting for it for 2 years.  God is awesome!  The bad news was my MRI showed that ALL of my lumbar disks are herniated, 3 nerve roots compressed. Guess all that fainting did some damage.  I know it's bad, but it kind of makes you feel vindicated for all the times no one believed how much pain I was in.  Having diabetes, all of my doctors blamed the numbness in my feet and legs on diabetic neuropathy.
The problem with having 2 diseases that can effect multiple organs is that it is very hard to distinguish which one is the culprit this time.  I did get a continuous glucose monitor so I tell my fiance if he should bring me sugar pills or saltwater when I fell down!  
I didn't have a viral infection right before my diagnosis of dysautonomia like most of the people here. But it seems a common factor. Heiferly does a lot of research and can give you the best answers, I always read her stuff, it's helped a lot.  I don,t have kids, but there have been some good discussions about dealing with family stressors on here.  Hope you find  good support here, I have.

[aaronhome]

Sorry to hear you are dealing with the same thing. It sounds like your symptoms are very similar to mine. My blood pressure dropped to 58/42 and would not come up while I was in the hospital last time. I am used to high blood pressure spikes but have never dealt with that kind of low pressure. I can tell you all I could do was pray as I thought that it had finally decided to take me. My cardio doctor is very familiar with my case, but he was not on call the night I was taken in last time. The doctors there really did not seem to want to listen to me when I tried to explain to them what was going on. They just scheduled a lot of test for the following day and pretty much just left me lie there. Once my doctor found out he was right in there and cancelled the testing and a surgery they had planned. I hope you have found a good doctor as well to support you as you go through this. I also wish you luck on the SSDI. My team of doctors are the reason I am on it now. As much as I hate not working, I am glad they pushed me that way. It does help releave the pressure when I have 4 kids. I really wish you luck in the future and really thank you for sharing. This is the first place I have found where I can speak with others going through the same thing as I am and it really helps to not feel so alone in this.

Thanks

[Kessey]

this sounds similar to me.  My heart rate goes from 50's to 160's , blood pressure 60's over nothing to 200/100 and I have had 3 heart caths to try to fix it with no success. I also vomit solid food from my dinner when I get up in the morning.  Diagnosed as gastroparesis and severe dysautonomia 2 years ago, taking about 17 different meds now (also have diabetes on insulin) with no improvement.  Still fall down and pass out frequently.  I am 47 and in the process of getting ssdi.  I have great doctors but I agree with you, hospital staff don't understand the condition.  I am a frequent flyer with injured back, broken ankle, head injuries from falling and they do treat you like a drug seeker.  And I am a nurse going in to my own hospital! Hope you find some relief.  As you can see I don't get much sleep either it's 4am here and I'm .still trying to get to sleep!
  

[aaronhome]

I have not been given a tilt table test as of yet. The symptoms that I have range from heart related issues, digestion / Gerd, memory, body temp control, to sinus issues. I basically take medications as a precautionary measure to help control, stomach acid, heart issues, and sinus conditions that arise from time to time. Some days are not to bad but some days any one of the symptoms mentioned can become severe. The relationship between the heart attacks and the strep throat appears to be some type of trigger for heart and valve spasms. Three years ago when I first had the attacks is when all of the additional symptoms started. I had been fighting them for the three years until this past strep throat episode. It is now thought that rheumatic fever may have also been a contributing factor in both cases where I ended up with the spasms in my heart and valves.

Specific symptom:
Irregular blood pressure, normal is 130 / 70 for me but at times for no known reason my heart will go to 200/100+ without warning signs. Generally it is assumed this is being caused by some type of spasm or "signal" telling my heart to adjust blood pressure when it is not needed. another symptom is severe upper abdominal pain and bloating for no reason. A have had numerous scopes done to try to diagnose a reason for this and nothing has been found. Occasional regurgitation of solid food sometimes hours after eating as well as heart burn at other times. in ability to sleep any decent amount of time and sometimes severe head aches when laying to long. Some days I have no issues what so ever with normal sleeping. At times I have very poor memory then I have no problems with memory at other times. I  tend to occasionally have issues with my sinus's  seemingly closing, which has been seen on CT scans, for no apparent reason. My sinuses will at times bleed for days as well as cause severe head aches. Then it just goes away. doctors have tried several allergy medicines and antibiotics to try to stop this from happening but nothing has had any effect. These are just a few of the issues that I have been dealing with since the first attack 3 years ago. Before all of this came about I was about as healthy as one could get.

[Heiferly]

Have you considered going to either Mayo Clinic or Cleveland Clinic for a more thorough workup?  This doesn't sound like dysautonomia.  What tests did they do to diagnose dysautonomia?  Did they do a tilt table test?


It also isn't clear how the strep throat this month induced the second bout of three myocardial infarctions.  Why did they think you were a "druggie" if you are taking cardiac- and gastro- related meds?

I can't really speak much to your posting, because it doesn't sound like dysautonomia.  I don't know how the strep and heart attacks are related exactly, or how those fit together with whatever symptoms you've had in the meantime, but I think that may be a question for one of the "big wig" diagnostic hospitals like Mayo or Cleveland Clinic at this point if your care is being handled as haphazardly as you're describing at the local level and you have no real answers or solutions after this long.

You may want to post in the Heart Disease forum and see what they say.  It would be helpful to be more specific about the symptoms you've had in the intervening years as well as the specific medications you've been taking.

Best,
Heiferly.