PLEASE READ/HELP!!!

[ck732016]

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 ******* 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!

[WinterSown]

The TTT is not the POTS machine, all it does is measure syncope and orthostatic intolerance. Your test results, observations during the test and your medical history go into making a diagnosis. Sounds like you do have dysautonomia symptoms--I have OI and NCS.  POTS is not the only dysautonomia and I am sorry that you are going through these symptoms. Take your meds, increase your salt and water, eat foods rich in electrolytes and slowly increase your stamina with incremental exercise--if you think you are doing too much then do less until you have enough flexibility and strength to do more. Be a squeaky wheel, if your meds or management need adjusting your doctors won't know unless you tell them. You will go through trial and error on meds and management until you get the right combo for your unique condition. How you feel your symptoms is entirely unique to you so getting on track can take some time to stabilize your symptoms, you will learn to manage your life.

 

 

[MomtoGiuliana]

Have you seen a dysautonomia specialist?  There are many treatments to try beyond exercise and low dose SSRI.  And salt and fluids.  It can be trial and error to find effective treatment.  Unfortunately doctors who are not specialists can be stumped on how to help someone with dysautonomia to feel better, and may not even understand how disabled the patient is.

[kkirsten]

Hey ck732016!

I wanted to reply to this because we have freakishly had the exact same pattern of events. I am also at University and if it's any consolation, here is what happened to me:

Toward the end of April 2018 I was out with my boyfriend and suddenly felt really unwell. The room was spinning, I had tinnitus in my ears, I felt nauseous as h*** and my heart was racing like crazy. I went home that night and it seemed to wear off. A few days later, everything appeared again, and this was on and off until around the 1st May when I was woken up with excruciating chest pain on my left side only, and it felt like how you mentioned an elephant was sitting on my chest (just the left for me).. I went to A&E loads of times, and have spent my whole summer at home basically bed resting and having GI tests done; like endoscopies etc. I was told back in May that I just had a bad respiratory virus that would go away, but alas over the Summer break my symptoms started to get worse and I began having ones I didn't have at the start (skipped heart beats & feeling like I can't stand up for a long time).

You say that you've had a TTT done and they said you don't have POTS, but another form of dysautonomia. This was literally my result today, they said it's likely I have some form of Orthostatic Intolerance (from the bedrest from the flu), and I need to recondition myself because you can actually try to improve your symptoms drastically. I also have GI issues randomly since April, I believe that the whole virus/resting threw my body off balance and that in time these things will even out.

In the mean time, the syncope specialist I saw today who conducted my test told me to: Drink 3 litres of fluid a day, more in the morning as you are less hydrated from the night's sleep. Add sprinkles of salt to your food throughout the day (up to 2 tablespoons daily), but check you don't have a family history of high blood pressure before consuming this. Gradually start reintroducing exercise into your routine, if you start exercising on things closer to the ground (such as rowing machines in the gym, swimming or cycling machines) this will help your intolerance to standing up and becoming dizzy. If you focus your exercise to re-strengthening your calf muscles this should be beneficial (what I'm hoping to do anyway), as it helps the blood flow back to your heart correctly. I was also told to wear sports leggings (as they are tighter and yet can still be worn to lectures and stuff), or compression stockings underneath jeans if you need.

It would be good if I hear back from you as we have had the same freaky flu/virus that has started our Dysautonomia (remember you can grow out of this sometimes, it won't last forever)!!

[Iheartfrogs217]

I’m sorry I don’t have any answers, but I just wanted to reach out and say I’m in the same position. I’m a university student and can barely make it through classes let alone anything else. It is so hard to get through the day because of exhaustion and fear about what symptoms I’ll experience next. Stay strong and know you are not alone!! 

[yogini]

I had a sudden onset of Dysautonomia very similar to yours.  I would guess that most of your symptoms are related to your Dysautonomia especially if you were perfectly fine before. Whether or not you have POTS actually does not matter as much because many of the treatments for Dysautonomia are the same. I agree with some of the others that a Dysautonomia specialist would be helpful. It sounds like your doctors are a bit confused! A knowledgeable Dr can help you find medication that helps your symptoms. When  you start to feel better, then you can exercise and be on your way to recovery. You can find lots of good info here on the forum.  I hope you feel better soon.

[Bluebonnet08]

Hey, I'm so sorry you are dealing with this!

I have a couple of questions - 1.  Are you taking any type of birth control pill?  This made my POTS a lot worse.  2.  Have you had iron bloodwork, especially looking at ferritin?  

3.  Is there any way you can get regular saline IVs?  You mentioned you got one at the ER and felt better for the following week.  Maybe you could try them weekly for awhile to see if your symptoms improve.  

For the shower- I would recommend a shower chair.  It doesn't have to be a permanent thing, but it helps significantly.  My specialist said one of the hardest thing a person with POTS can do is shower (standing still, hot water, raising your hands above your head to wash your hair).  I had to swallow my pride & just get one and it really does make a difference in my energy levels!

You could also get a handicap placard to make walking easier around campus.  That's what I had to do for graduate school.  

For the SSRI,  it is dangerous to start/stop them abruptly.  People should wean off of them slowly and always under doctor's supervision and ideally letting family/close friends know as well for support!  It can be difficult.    

I am SO sorry you are going through this.  It's horrible I know.  I hope you will start to improve over time.

[ck732016]

On 10/22/2018 at 3:08 PM, Bluebonnet08 said:

Hey, I'm so sorry you are dealing with this!

I have a couple of questions - 1.  Are you taking any type of birth control pill?  This made my POTS a lot worse.  2.  Have you had iron bloodwork, especially looking at ferritin?  

3.  Is there any way you can get regular saline IVs?  You mentioned you got one at the ER and felt better for the following week.  Maybe you could try them weekly for awhile to see if your symptoms improve.  

For the shower- I would recommend a shower chair.  It doesn't have to be a permanent thing, but it helps significantly.  My specialist said one of the hardest thing a person with POTS can do is shower (standing still, hot water, raising your hands above your head to wash your hair).  I had to swallow my pride & just get one and it really does make a difference in my energy levels!

You could also get a handicap placard to make walking easier around campus.  That's what I had to do for graduate school.  

For the SSRI,  it is dangerous to start/stop them abruptly.  People should wean off of them slowly and always under doctor's supervision and ideally letting family/close friends know as well for support!  It can be difficult.    

I am SO sorry you are going through this.  It's horrible I know.  I hope you will start to improve over time.

Hi there! So to answer your questions.. no I do not take any form of birth control. I have had my iron looked at- not anemic. No clue about ferritin. I would love to see if I can get IV's. I heard from several people it helps their symptoms A LOT.