So Glad To Have Found The Forum

[sstephan]

Hi,

I am new to this forum but just wanted to post that I feel very lucky to have found this place on the internet. I cannot believe what I read on the posts because I can relate to so much of it! There were times when I would wake up so nauseated, shaking, tachy, faint, etc etc and wonder what in the world was wrong with me. I left so many doctor offices in tears after being told that I needed to see a psychiatrist and was asked question after question about my "home life" and "stresses at work". It was an awful feeling and I began to question if I was just imagining the problems. I was afraid to tell my doctor about all of the new symptoms I was experiencing because he already thought I was a freak. There are some things I just don't understand though. I was first diagnosed with snycope from a cardiologist when I was 18 due to passing out when I would work out. (and several positive tilts) I was put on a beta blocker. Things got better and they took me off the meds saying I grew out of it. NO problems until two years ago and bam! everything spiraled from there. I began having problems with many systems in my body. Why couldn't anyone see the relationship between the systems? The GI doc, neurologist, cardiologist, and rhemetologist (sp?) would only focus on "their system". I knew that somehow this must all be related. It was finally my internist who said that the autonomic nervous system could maybe be responsible for this. My cardio actually told me that the GI system is not involved in POTS and that anxiety can manifest itself in "stomach aches and pains" as he called it. Thankfully, I found Dr. Gilden at St, Mary's who specializes in autonomic dysfunction. I have only seen her a few times and so far she is working on trying to figure out if there are any underlying factors causing this. She is looking at blood sugars as they are high and trying to see if there is a link. I just don't understand why this illness is not understood. Why is it that an emergency room doctor cannot understand this? If I ever go to the ER for a bad attack, I end up waiting for hours for them to just discharge me home and told to "go take some Paxil. This is not an acute emergency- it is a chronic problem and you need to see a specialist- duh!" What I don't understand is that I can feel just fine for a period of time and then bam! out of the blue symptoms hit again. I may feel badly for a week or so and then get back to normal for a little while. When I am not sick, I think about the illness and think this really isn't so bad. But then I get sick again and things turn around on me. I function okay and do hold down a full time teaching position. However, is there a progression to this illness? I have noticed that now things get black and fuzzy almost everytime I stand up from a kneeling position. (i teach little kids) Also, during a really bad tachy episode I have to stay calm and tell myself that this too will pass. I guess my question is- has anyone actually passed away due to an autonomic episode? Does the heart always right itself when this happens? This is what scares me the most. And the severe stomach/back pain that I experience. Will this disease progress? And why can't doctors answer these questions? I just don't understand it and it is very difficult to explain to others. I have seen others mention autonomic crashes. Do you have periods of time when you feel okay and periods of time when you are really sick? What precipitates this? I know summer is hard for me and lack of sleep can figure into it. Thank you for listening. I cannot believe that there are other people who are experiencing this! I just keep thinking about something my mom told me when I was a little girl- God never gives you more than you can handle. (well he must think we can all handle quite a bit!!)

Susan

[CDJ]

I have had crashes that come out of nowhere too!!! Just when I think I am getting better(HAHA) I will crash and not see the outside for weeks. Last summer I was ok (which is odd)but fall came and I crashed and haven't come up yet.But then I have had great days ubtil evening and then crash.I can not find ryme or reason for this.I will say most often my crashes are in the morning.I had been sick and looking for an accurate dx for 12 years until Northwestern dxed me. Now I see Dr. Engelstein at Ressurection.She is thr director of electrocardiopysiology.She is very knowledgible and very compassionate. I like that she includes my assesments in treatment. i think after years of being told i was crazy by other doc's it is nice to finally find someone to work WITH me.

[Guest malosp]

Hi,

There were times when I would wake up so nauseated, shaking, tachy, faint, etc etc and wonder what in the world was wrong with me. I left so many doctor offices in tears after being told that I needed to see a psychiatrist and was asked question after question about my "home life" and "stresses at work".

Susan

I can relate to the above. It is pretty sad, when people who are ill go to the doctor for help and end up feeling worst then when they came in, because not only do they not get the help they went there and PAID for but they are also blamed themselves for being sick. I work in health care and I have never been sick (even when I was diagnosed with celiac sprue) like I have been with this. But yet, despite any lack of history of being quote "stressed" every doctor except one blamed my illness on "stress".

I myself, was the one that figured it was my autonomic nervous system because I could just tell my homeostasis was out of whack. I still don't know whether it was the virus I had or my malabsorption of vitamin B12 caused by my celiac sprue or maybe a combination of both. Whatever the trigger I have it and I am praying it slowly gets better. After all, the stats still say that most people do recover. I am former runner who was fined tuned before I got sick, so I knew that it had something to do with my main system being out of sorts. I could just tell. My tachycardia was sooo very scary and despite having a heart rate of 130 just standing there even before my stress test my doctor looks at me and says "your just stressed". I said "I have known stress and I have never had a heart rate of 130 just standing".

I am again amazed at the amount of people on this site that are either health care workers or teachers. I guess we should do a poll. Maybe there is something out there they are missing. There also seems to be several celiac sprues on board.

I really believe in the theory of A+B+C+D = E . In otherwords, it is just not one thing that has caused this dysautomonia but a series of events or things that have led all of us to this point. It is a tangled web we weave and there must be a way to unweave it. I hope.

My illness, seems to be changing constantly. For instance in the beginning I had severe muscle aches, tachycardia alot and at inappropriate times, night sweats, palpitations. Now, my paliptations are pretty much gone, the tachycardia is changing in that it use to be sensitive to many different body functions like eating, position changes, standing, getting up quickly, now it seems to be more resistant to some of those things but extreme stress like someone coming up behind me and scaring me will cause tachycardia like it never used to prior to my illness. Now, I seem to be having more stomach problems and I still have the extremes in my blood pressures which makes me dizzy. Maybe I am slowly resetting my themostat so to speak.

I guess, I will now make it my life's work to do my part to help get this illness reconized. I think is just disgusting that so many people have to suffer like this and then to be dismissed so easily by doctors adds insult to injury. I just wonder what people did before there was the web. They must have been in total misery. Thank god for this site. There is strength in numbers.

[calypso]

Susan,

Did you say your worst POTS symptoms developed during or after pregnancy? It is fairly common for POTS to really hit hard during these times. Are you still breastfeeding? That also can be a factor in it, because of varying hormone levels.

What is happening with your blood sugar levels? Are they high all the time? Are they only slightly high -- prediabetic? Do you have a family history of diabetes? Autonomic neuropathy can be a consequence of uncontrolled high blood sugar, or diabetes. How long have you had high blood sugars?

Sorry for all the questions, but sometimes this helps others here and you as well to figure things out.

Are you eating a low-sugar, low-glycemic index diet? (This would be no white sugar, flour or anything junky). Sticking to a whole foods diet (things that are unprocessed and don't come out of a box) is very helpful for many here. At the very least, it may help the high blood sugar issue.

Are you able to exercise at all? That also could lower your sugar.

Amy

[sstephan]

Thank you Amy for your reply. I noticed that your bio stated you had pregnancy induced dysatuonomia. My problems started before I was pregnant, however, they were really bad during my first and second trimester. I was taken to the hospital several times and always rushed into labor and delivery. Very frustrating because I knew I was not in early labor! I did not breastfeed, as I was advised not to because of all my medications. I can exercise sometimes depending upon the day. I can't do nearly what I used to do- I used to be a fitness instructor. That's when I first started passing out. I just recently found out during an episode that my blood sugars are running around the 170's which I know is just elevated. Dr. Gilden is running some bloodwork that I am waiting for the results. I don't really know what the blood sugar levels mean. My grandmother had diabetes but not until she was much older. I eat a fairly good diet, although I do have a weakness for chocolate chip cookies!! I can't say that I never eat anything from a box though....

Thank you for sharing your advice. I really appreciate it. Hope you are feeling well!

Susan