PLEASE READ/HELP!!!

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Hi everyone! I am new to this website and this is my first post. It is going to be a long one, but I am hoping some people will take the time to read it and offer some advice.

I'm a 19 year old female currently in my second year of college. For the past 6 months, I have been dealing with debilitating symptoms. I am going to start from the very beginning.

Last week of my freshman year, (end of April 2018) I tested positive for Flu B. Ending my freshman year with the flu was the absolute worst timing. I was cramming for finals while also trying to be social. Being the dumbass I am, 3 days after my diagnosis, I decided to go out drinking one night thinking I would be fine. I also consumed no water and very little food before this. I was fine drinking before I went home. I went home and smoked a little weed. (Side note, I smoked weed every single day before all of this started happening.) I went to bed with what felt like heartburn that night but figured it was just because the flu, the weed, or something benign. I went to bed with the thought I was just tired and sick since it was 4 AM and that I would be fine in the morning. Boy was I wrong. The whole thing escalated. It felt like there was an elephant sitting on my chest, heart beating out of control, dizzy, couldn't see straight. I've never felt so god awful in my whole life. I had my roommate drive me to urgent care where they gave me a chest x-ray. They told me I was just dehydrated. (Made sense to me). Fast forward to 2 days later. It was the day I moved back home after the school year ended. I felt pretty much fine at this point compared to the other day. I had plans to hang out with all my friends that night. I smoked weed again thinking I'd be fine since a couple days had passed. I was wrong again. I immediately went to the bathroom and had severe diarrhea for 20 minutes and had the same symptoms I did the other day. I figured I was just dehydrated again but something in my gut was telling me something was wrong. I went to the ER that night where they just gave me an IV and some bloodwork which came back normal. The week after that was okay for the most part but then things started building up. I was dizzy all the time when standing, had horrible brain fog, palpitations, vision changes. I saw a total of 30 doctors over the summer to try and figure out what was wrong. Every single one of them told me it was anxiety. This made absolutely no sense to me because I had never once dealt with it in my life. Things got progressively worse as time went one. My GI tract was becoming affected. I also developed IBS and Gerd which I never dealt with before this all started happening. My sleep became severely impaired, I lost my appetite, and could barely leave the house. I work as a hostess during breaks where I stand for 6-7 hours without a break. I was always fine during this which was weird to me and doesn't make sense. I think I just pushed myself no matter how awful I felt since my job was the only thing I had going for me. I had many tests done including:

- 3 CBC's

- Lyme

- CMV, EBV

- Thyroid

- Celiac

- Several EKG's

- Echo

- Vitamin deficiency

- Brain CT and MRI

- Chest X-Rays

- Eye exam

- Hearing test

- Pap Smear

- Urinalysis

all of these came back NORMAL. I even had a doctor tell me I was, "picture perfect healthy!" I felt completely defeated. As time went on my symptoms started adding up and got even worse. My symptoms included:

- Dizziness

- Vertigo

- Sensitivity to loud noises and heat

- God awful brain fog

- Constipation

- Nausea

- Headaches

- Palps

- Chest pain

- Extreme fatigue

- Blurry vision

- Pain sensitivity

- Gerd and IBS

- High heart rate upon sitting and standing

I was eventually prescribed an SSRI and started seeing a therapist because every doctor was sick of seeing me me. Last week before school, I finally had a TTT done after persuading my PCP. Upon my results, it said, "Meets criteria for pots." I was so happy to finally have an answer. Except it wasn't that easy. My cardiologist, neurologist, and PCP all told me I definitely didn't have pots. But then why would the test say that? My cardiologist said I had some form of dysautonomia and that I needed to re-condition myself and that I would be back to normal. I have been at school for about a month now. My fatigue and brain fog is absolutely debilitating. I can sleep for 7 hours or I can sleep up to 12 and I will still so tired to even get out of bed. I used to go out and drink 4-5 nights a week and smoke every night and I haven't had a drink or smoked since April. I can't even go to the grocery store without feeling completely defeated. I'm also extremely sensitive to pain now. I stubbed my toe a few weeks ago and fainted! Absolutely terrifying. I have broken bones and gotten tattoos and have had no issues. Now the slightest amount of pain makes me feel like I'm gonna pass out. I have also developed migraines. I would get a headache maybe once a year. Any help at all would be greatly appreciated. I'm wondering if it could be CFS. My doctor's at home wouldn't test for an autoimmune disease because I showed no symptoms. I'm lucky if I leave my dorm most days. I don't think I ever needed an SSRI but now I am scared to stop taking it because I don't know how my body will react. (I take 25mg of Zoloft) I know I am supposed to be doing light exercise but I can't even get out of bed most days. Even showering becomes a huge struggle. My HR gets up to the 150's. I would be very grateful for any advice or ideas of what is going on with me. Thank you!

 

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  • Posted

    I’m so sorry that you’re going through this. I totally understand your pain. I’m in college and have always been healthy and at the beginning of the summer literally out of thin air I started having the strangest digestive issues and eventually it progressed to never feeling hungry ever I force feed myself food every day, & my HR standing up is at about 140-160. I live in Florida so I can’t even bare walking across campus or going outside anymore it’s so sad. I do get the brain fog like you do, almost a lot of similar symptoms. I’ve had a colonoscopy, endoscopy, tested for Lyme, autoimmune, multiple blood tests, stool tests, thyroid checked and everything is normal and every doctor tells me I’m healthy. I like you used to go out and be very social and now I am on SSRI’s and barely leave my apartment because I’m afraid I’m a complete freak and no one knows it because I look completely normal. I’m so so sorry you’re experiencing this and I totally feel for you. I definitely do think you have POTS and I am being tested for it in two days, I have to demand a TTT when I see the electrophysiologist. If you want to text me send me a personal message on here and we can talk!! - Veronica 

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  • Posted

    Caroline i feel your pain i just want to ask you something ,before all the extreme symptoms ,were you on any type of antibiotics ?? Any meds  before your symptoms ?? Because mine happened after taking antibiotics 
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    • Posted

      Nothing at all! I was on Tamiflu for my flu symptoms. I also took an adderall with my Tamiflu one day which resulted in me throwing up. But that's about it

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  • Posted

    Not sure if you got my message back! But I actually saw an electrophysiologist today and my blood pressure doesn't even drop when I stand up, my heart rate just increases and they have considered POTs as a diagnosis. I really think you should get into an EP! they're really helpful at diagnosing POTs and will most definitely not think you are crazy.

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  • Posted

    Caroline. I am. caregiver of a woman with 5 of 10 most painful medical conditions known to modern man including Dysautonomia, POTS, Triminigal neuralgia, fibermyalgia, who her Dr took private care of her until he abanded her a chronic pain patient with opiate dependancy, iron clad. I saved her life 5 times as her Dr did his finest to hire mercenaries to term her and mostly succeeded. Now she is half blind in both eyes plus wheel chair ridden in horrific pain. I fought 16 hours per day to keep her alive while dealing with finding her a new Dr. Due to what her Dr did to make certain she not make jury trial as a witness against him, I have grown to own extensive helpful information of which will help guide and improve your down hill slide and give you knowledge plus peace whereby doctors put money over your welfare. Ask of me and I shall respond in kind. Terry.
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  • Posted

    id say pots or vvs or maybe similar , increase salt and water and see how it goes, stronger legs and tone would help, you may need a few meds if symptoms persist 😃

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  • Posted

    my experience tells me what 99% of physicians have no clue how to diagnose your main disease. I see many signs that you have Dysautonomia! if so additional pots disease will follow. Dysautonomia is progressive and terminal over time as your body no longer functions automatically. figure possible 20 years shorter life span. figure you will need salt water ivs and protect what health you have while living the in between healthy days with fun times in God's light. you may have great pain some day requiring pain meds. I hope not. you may bend over and faint or code in hospital. should I be right age 40 may be your next goal for all you desire in a family to accomplish. plan ahead.

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