New To The Forum. Looking To Gain Insight

[Divinelixir]

Hello. So.... I have been sick for a good decade and been to every doctor you can imagine. Basically it came down to everyone in my life including professionals assuming I was a depressed and anxious hypochondriac, and I started to agree. A few weeks ago I saw my neurologist after my cardiologist recommended I go to an autonomic dysfunction specialty clinic. I saw my neurologist instead because the clinic wait List requires I have three different tests done before I can make an appointment and they are booked out 6 months or more. I do not have the money to have all these tests done. I had a tilt table test a few years back and while it was positive it wasn't positive for pots... I just had a holter study done and it showed I had numerous skipped heart beats and quite a few palpitations. My cardiologist said my heart isn't the problem, something else in my body is causing chest pains and constant inconsistent heart beats. So my Neuro said I for sure have autonomic dysfunction looking at all of my previous medical tests. I have had orthostatic hypotension, tachycardia, and near syncope. My digestive system is out of wack I can barely function (I went gluten free 5 days ago and feel worse... My gi and neurologist recommend I do so). I am a mess. My Neuro said let's try gluten free, dairy free, beta blockers, and coq10. I haven't started the beta blockers because I am scared. I am already constantly exhausted and sometimes my heart rate gets low and I feel like I am I'm slow motion and going to pass out. I live in constant brain fog and am always lightheaded. Anyhow my question is. Can I really have autonomic dysfunction if they haven't told me what kind I have? Am I just crazy, I'm starting to think so cuz autonomic dysfunction as a diagnosis is just too vague? Are they just blowing smoke up my patoot? Doctors don't seem to know much about this and there isn't a lot of info on the internet. Sorry for the long winded post.

[Divinelixir]

I should mention brief medical history. I was diagnosed a long time ago with mitral valve prolapse but my current cardiologist said I don't have it. Um OK. As for digestive disorders I have suffered with throughout the years: ibs diarrhea, ibs constipation, gastritis, colonic inertia, hiatal hernia (one gi saw it others did not), acid reflux (gerd), bile reflux, was diagnosed with celiac but they realized it was a misdiagnosis and decided I am gluten intolerant. Other issues: pcos, hypotension, anxiety, tachycardia at times, palpitations, etc

[statesof]

If they diagnosed you with autonomic dysfunction I would assume they have reasons for it, either in your medical history or from your tests results over the years. What did you tilt table test show? You mentioned that you had orthostatic hypotension, but did they diagnose you with POTS?

Even POTS as a diagnosis is vague; usually if your tilt table test shows your hr increase 35 points, and you have a history of symptoms consistent with autonomic dysfunction you can be diagnosed with POTS. That doesn't mean, however, that they can ever tell you where exactly the problem is, what caused it, or why you feel horrible when your vitals look fine. Each POTs Doctor I've been to seems to look at symptoms differently, one told me digestive problems and any symptoms that last longer than a day, or don't resolve after laying down are not the result of POTS, but in practice we all attribute these symptoms to either POTS/ dysautonomia, or believe they are the end result of our dysfunctional bodies.

[shathaway0811]

You sound exactly like me!! I have been told all my life my physical symptoms are somatic and therefore a result of my anxiety and panic disorder. It wasn't until recently when I decided to assertively call BS on the whole thing and take my medical care into my own hands. It took me finding a doctor who treats EDS (and has it herself) and who is therefore very familiar with diagnosing and treating autonomic dysfunction to be validated. That's all I needed to get the courage to stand up for myself. Yes you can have autonomic dysfunction without a specific type being given; it is a rare and poorly understood condition and so most doctors have barely heard of it and it's compounded by the fact that there are so many shared symptoms with entirely separate illnesses.

My suggestion would be to keep a detailed diary of your symptoms so that you can prove a pattern of coexisting issues and repeated complaints to show whoever you go see. I've finally been referred to GI for an endoscopy and colonoscopy, got put on a beta blocker (which actually raised my blood pressure and has done a tremendous amount of good for me, if that helps your fear at all!) and am not going to stop pushing until someone gives me an answer.

It is incredibly discouraging to essentially be told you're mentally ill, believe me I get it. But remember that no one knows how you feel physically except for you; if you're anything like me, you've gotten really good at living with the constant discomfort and it is your norm, so from the outside you probably appear "normal" to a lot of people. It just means you'll have to figure out another way to "prove" what you've been experiencing - hence the written diary suggestion.

Good luck and check out the list of docs on here, it's pretty extensive!

[Divinelixir]

Thank you for your response and kind words. I appreciate it. I have a fear of medication and I decided I would not read the side effects of beta blockers and only the benefits. I was excited to see it helps with anxiety. Then when I went to pick up the script the pharmacist shattered my positivity by telling me do not take it during the day as my neuro suggested because it will make me so tired basic functioning will feel like a serious task and that it may mess with my breathing. I already have some issues where my breathing slows down. So she added some fear into me. I am a small girl and sensitive to meds and kind of phobic about them. I keep meaning to try them on the weekend and then freak out (my Neuro also said it may lower my bp but to give it a go to help with the goofy heart symptoms). I also worry because I read its a medication that has to weened off. I quit benzos and antidepressants almost 2.5 years ago and the withdrawal was terrible even with slowly weening off. For me personally the ssri was a bandaid for a short while but I feel it has permanently damaged me being on those and the negative effects outweighed the benefits. That's just me I am not knocking those meds. What works for some doesn't for others. I'm just hoping for any improvements. Its hard getting through work and life feeling like death everyday and no one sympathizes or understands. They just get irritated or think you are mentally ill cuz you look fine. Its tough when the people close to you think you are overdramatic, looking for attention, or a hypochondriac. I sometimes wish they could be me just for a day cuz it would be an eye opener. It is what it is and unfortunately it has mad me agitated and bitter being this way. I am hoping to gain more information and positivity from all of the wonderful people on this forum. I just want to live life again... I'm tired of just existing.

[Divinelixir]

Here are my tilt table results from 2012:

STUDY FINDINGS:

1. Supine vital signs include a heart rate of 64 beats a minute and a blood

pressure of 112/74 with sinus rhythm noted on telemetry. The patient does

have some mild weakness and lightheadedness at baseline in supine position.

2. Initial upright measures include a heart rate that increases to 86 bpm

with a blood pressure of 112/80 and sinus rhythm noted. The patient notes

some mild worsening of her dizziness at this time. The patient continued in

the upright position for 20 minutes. Heart rate remained in the 80s-90s with

the last heart rate at the 20-minute mark being 101 bpm. Blood pressure

remained stable in the 110s to 120s throughout the upright period. The

patient's symptoms remain stable and mild with mild dizziness and

lightheadedness throughout the upright period. Sinus rhythm was noted with

sinus tachycardia just at before suprasternal started.

3. After initiation of isoproterenol, the heart rate went up to as high as

151 beats a minute, but then down to the 110s to 120s after moderation of the

dose. Blood pressure remained stable in the 110s to 120s with 1 blood

pressure up to 135/76. During this time, the patient became more flushed and

clammy and continued to remain lightheaded. No syncopal episode was noted.

4. The patient was then returned to the supine position. Her blood pressures

were anywhere from 102-118 over -60-77 with sinus rhythm noted. At that time,

patient continued to feel mildly weak and lightheaded and clammy, but improved

with her heart rate slowing.

CONCLUSIONS: Head up tilt table testing positive for significant heart rate

rise of 22 bpm with initial change in position to the upright position from

supine; otherwise, no evidence of frank syncope or neurocardiogenic changes

during the remainder of the study.

COMMENT: The patient's study suggests some degree of orthostasis. However,

no frank syncope was noted or any other findings to suggest the patient's

ongoing symptoms in the supine position. Study suggests some degree of

orthostasis and thus patient would benefit from aggressive fluid hydration,

which was once again emphasized. The patient had been on a trial of low dose

Midrin started recently, but has not tolerated this due to significant side

effects. This will be discontinued at this time and Fludrocortisone 0.1 mg

will be started on a daily basis as well as ongoing aggressive fluid hydration

and increased sodium intake for orthostatic component to the patient's

symptoms. Suspect, however, that patient's symptoms are due to more than just

orthostasis and as such, she is already planned to see Dr. Brian Chapman from

Neurology the following week for further evaluation. She will be following up

with me in my office in approximately 4 weeks to reassess.

[RobinB]

Hi there! I can relate to you on the medication thing. I'm terrified of meds because I usually react very strongly to even small doses. I was also prescribed a beta blocker and I was told it would lower my blood pressure. My blood pressure is already so low why would I want to do that?!

So for now I am treating with lots of fluids and salt. It doesn't seem to make a difference for me. I'm sorry I can't offer any help but I just wanted to let you know that you are not alone. This disease is scary and can make you feel so isolated. I too have often wished that I could switch bodies with someone just so they could see how it feels. After 10 minutes they would never doubt us again!

I also have symptoms laying, sitting, standing. It doesn't matter I'm always lightheaded and shaky. Laying is definitely preffered, but it's like we are trapped in these bodies that don't work right! So frustrating!

Have you had a good work up for potential underlying causes?

Wishing you the best.

Robin

[Divinelixir]

Thanks robin. I hope you start feeling better soon. I have had so many different tests and no underlying condition has been found. I am limiting my workups because I just got out of medical debt and with the terrible and expensive insurance I currently have I don't want to sink back into a hole. I do have an appointment set up with a gi (he is the first one I ever went to out of the many I have seen) and will see what he says. Other than that I have pretty much given up on finding a "cause". I will just try to eat better, exercise even if its just a walk with my dogs a few times a week, and eliminate some stress (which is impossible with my job, this disorder, and other things in life). I just keep hoping one day my quality of life will improve. Even if it is just a little bit. I know I feel weak and pathetic at times but know reality it takes a strong person to go through what we do. Take care of yourself ?

[RobinB]

We are definitely strong people! How long have you been dealing with this? I'm looking into ways to decrease my stress but its difficult for sure. What type of healthy eating are you trying? A specific diet? I've thought about that as well but I really can't find any diet recommendations other than high salt etc.

[Divinelixir]

I have been feeling bad and really struggling for about 10 years and doctors kept telling me it was just anxiety. I even went on ssri's and benzos for years. For a short period they helped but the side effects just outweighed the benefits. So yeah its been a decade of not feeling well almost every day. As for diet I have always been a terrible eater. Basically anything of convenience (freezer meals and gas station snacks). I am now on a gluten free diet because I have been told to go on it for numerous years by different specialists and after speaking to my neuro and my gi issues being out of control I gave in. Its not going well but it's only day 5 since I cut gluten. I am also suppose to eliminate dairy. For the most part I have been dairy free these 5 days as well. I was on the high salt intake and excessive fluid intake and I didn't notice much of a difference... Other than being bloated from drinking so much water. I tried midodrine and had a bad reaction and then I was on fludrocortisone for awhile. I got off of all meds because I decided my body needed a break (minus birth control and an allergy pill. My doc suggests I stay on the pill because of my pcos). I have noticed I do not do well with fruits and raw vegetables. So for now I am keeping my fruit intake down and only eating cooked or steamed veggies (raw gives me debilitating gas pains). I wish I had more diet feedback for you. I am still new to trying to eat correctly myself. When were touch diagnosed or when did you notice that you felt off consistently?

[RobinB]

I was just diagnosed last December but I've been unwell for about 5 years. It started gradually after my son was born. The past year it has gotten way worse. I tried a paleo type diet for about 3 days and then gave up because I felt worse, but afterwards I read it was probably like a withdrawal reaction. Please let me know if gluten free helps you. I have read other threads here and some people say it helps. I also have a wheat allergy and the Dr told me it was mild and just to cut back?! Well that's hard to do so I just ignore that lol but maybe there is something to it. I also have a poor diet so I can totally relate. Eating healthy takes energy that we just don't have