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New To Dysautonomia, Seeking Guidance

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I'm new to the forum and to the Dysautonomia world. I'm sort of lost on what to do next, where to go from here. My GI thinks I have some form of Dysautonomia, but I live in an area where there are limited medical options and no specialists in my area. According to my GI, I'm one of 5 people in my state with Dysautonomia. I'd like to share my story, hoping to find some support and people like me.

It started June 6th of 2011, just shy of my 22nd birthday. My fiance and I were drinking some tequila, a couple shots and that was it, when I vomited, something that hasn't happened before. After that I experienced abdominal pain on my right side that never went away. I had no GP, so after a trip to Urgent Care, to rule out pregnancy and appendicitis, I went to my Gyno who referred my to a surgeon after an ultrasound. They suspected my gall bladder was the trouble, as I had started to experience severe diarrhea. Surgeon did not recommend surgery and sent me to a GI. This guy (not my current GI) ran the slew of GI tests, as I lost 40lbs on one month and found blood on my TP. There is an ulcer in my terminal ileum and a hernia in my esophagus.

I was given pills that didn't help and eventually the diagnosis of severe IBS. I had to change my diet dramatically, as I found out that I am unable to digest fiber. I can't have any fresh veggies or fruit, except for blueberries, bananas and avocados. I eat a lot of white bread and pastas, rice and protein. I lost a total of 70lbs in 4 months. I eventually had to quit my job and quit school. In December 2011, I started getting daily chronic migraines, which haven't let up since. In April 2012, I started experiencing leg tremors that only show up when I'm standing and bending my knees, hence stairs and falling down when ever I bend over. I have gotten very good at falling onto the couch and making it look like sitting.

I finally got a GP in August 2012, who ignored all my symptoms, because he listened to my heart. It frightens me that he was the first to listen to my heart in an entire year. My resting HR was 136. He slapped and EKG on me and found Sinus Tachycardia, he set me up on Atenolol at 25mg. I was referred to a cardiologist, after a lot of EKGs and an echo, he had no idea why my HR is so fast. I'm now at 75mg of Atenolol, because my HR still likes to hangout around 100bpm. So I must not have POTS, since I have tachy at all times. I've been to the ER after a tachy episode one night, not knowing what it was. A very scary night with two big bags of saline, later I was discharged.

I was finally referred to a new GI and a Neuro. Tried different meds for my migraines but nothing seems to help. I fight with my poor appetite and fatigue. I have heat intolerance, which makes the summer a prison for me. I faint if I get overheated, the feeling goes away if I'm able to cool myself down fast enough. I'm on Tramadol for my abdominal pain, amtriptaline for sleep and then my atenolol. I'm also on a few supplements. Dysautonomia also explains issues I had in my teens. I was prone to fainting and got hypothermia easily. I used to have a slower HR then, barely 60bpm. My GI symptoms are mostly under control now with my safe food diet. My biggest problem is that I have to strain to make a BM. I feel like my muscle down there is weak. I feel my pulse in my head and it is extremely painful. I get a rash and start to feel very hot and I can never remove all the stool. It makes the bathroom a miserable place. If I stand for too long my feet will get bright red and start to burn. I also sweat profusely.

I'm sure I left something out, but that's how I remember it. A month ago I saw my GI, who has given me the Dysautonomia “almost diagnosis.” It all makes a lot of sense now, except I don't feel that I fit into any of the subgroups I've read about so far. I am just really lost. Dysautonomia wasn't even on my list, as I'd learned everything I could about any disorder that fit my symptoms. I was most concerned with Crohn's Disease, until my neuro symptoms started. My GI recommended acupuncture, which I've been doing. It helps some, but the relief is short lasting and I feel awful the day after. I think my next step is to go out of state to nail down a diagnosis.

I need help. I want to know I'm not alone, because I feel so isolated. Now I know almost nothing about Dysautonomia. What are common treatments? How do I cope with this? I'm only 23. I finally understand what's happening to my body, but I'm so far away from a diagnosis, it is terrifying. Thank you for reading and any replies.

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Wanted to share a few things that helped to comprehend when recently diagnosed. if you can look at information explaining autonomic - nervous system and all that it does

- dysautonomia can be primary or secondary condition

- there are different sub types

- you are not alone, and amazing information here on dinet.org and members

Oh, it's fairly common that this is a long process from onset to diagnosis. And because it is not very well known and considered rare, a challenge to communicate with medical professionals who are not aware.

Hang in there, and hope something suggested helps. I was diagnosed in February of this year and we are still wrapping our minds to understand and educate ourselves. It is indeed overwhelming at first.

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Thank you for the reply! I'm pretty familiar with the ANS now and the sympathetic and parasympathetic systems. I have to come to recognize the times I'm over anxious and on edge, and now know why. My GI also thinks I could be diagnosed with a secondary condition down the road, but my blood tests come back negative and normal except for vitamin D deficiency.

Thank you, it is indeed overwhelming!

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It seems there are many with gastric issues.

And vitamin deficiency as well major allergies.

As I was explaining to my fiance today, this is not a neat and tidy, fit in a box diagnosis.

Am grateful for dine.org and this forum. It was recommended by the neurologist who diagnosed. I've learned a lot, and have been inspired by members.

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Your story sounds very similar to mine, and we are also close in age, and I am also somewhat new to my diagnosis after almost 10 years of symptoms. I also have to monitor my fiber intake very closely, my doctor thinks that my previously diagnosed IBS is just part of dysautonomia.

You will find that a lot of people on here can be very helpful with answering any questions you might have, and if you're like me you will certainly have a lot. Its amazing how many issues and symptoms many of us share. Also I think it is vital now to push for more testing to discover the cause of your dysautonomia, from what I've been finding out there are several possibilities. This is the stage I am at now.

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Thanks for reading, margiebee! I'm excited to have found some people like me. The fiber restriction is difficult, but it's better than the alternative. I'm sorry you've been suffering for so long. I had some episodes in my teens that led a lot of people to think I was faking or making it up for attention. I'm glad I have some sort of validation now. I'm glad I finally have a name for what destroyed the life I had.But with the name, comes a lot of confusion. I'm sure I'll have a lot of questions! Thanks again!

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