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Divinelixir

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  1. I feel you kiddo more than you know as I sit here ready to burst into tears with anger. I got a diagnoses and let people know so they would stop thinking I was full of it or a hypochondriac. I received no sympathy or understanding from anyone at work or in my home life when I told them the news (I actually got no response at all). I think everyone still thinks I am a hypochondriac because I look fine. Its just really hard to see people around you getting insane amounts of sympathy when they have a cold or the flu, but you don't get an ounce of compassion for an incurable disorder that we have to live with (and try to manage) for the rest of our lives. I find my issues make me highly irritable which in turn makes me a *****. Maybe that's why people could care less about my struggle or maybe I am a ***** because I resent that they don't care. I've just become a very bitter person and I hate that. I guess its because I feel utterly alone. No one in my personal life struggles with this disorder so I have no one to relate to, and healthy people sure can't relate to me. Its highly frustrating. I hope your gi appointment goes well. I saw mine yesterday and we have a colonoscopy and endoscopy set for next Wednesday. I have lost count of how many times I have had this procedure done. Hang in there and know we are all here for you. Please keep us updated on your progress
  2. 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?
  3. You are not alone. My stomach is in constant agony and there are times the pain is so bad or my bowels become so slow moving that I will overheat, have a panic attack, get lightheaded (though I am lightheaded 90-95% of the time as is) and almost pass out while trying to relieve myself. I know that's an overshare but I am keeping it real. I never get adequate sleep because of major stomach discomfort. I have a slew of stomach issues and I think a lot of it is because of the autonomic dysfunction (and terrible saying habits). My Neuro and gi's have suggested a gluten and dairy free diet. Also my gyno because I have pcos. May be something to ask your doctor about. I'm only day 5 gluten free and I feel worse but I'm going to push through it till my body adjusts. I am so sorry to hear you are experience such discomfort. Hang in there and feel better
  4. 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 ?
  5. 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.
  6. 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.
  7. 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
  8. 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.
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