Derek1987

2 hours ago, JimL said:

Have you been to the Vanderbilt clinic?

No. That was gonna be my 2nd option. I have a specialist in Memphis where I live. I'm seeing her Monday for the 2nd time. Traveling sounds like a mt Everest task. But I'll attempt to go eventually I'm sure. If this doesn't work out where I live...

24 minutes ago, JimL said:

If you don't mind me asking, what state do you live in? I pay for short and long term disability, so as long as I have a doctor sign off, I can get up to 6 months on short term. Long term is through my retirement fund, which is the state where I live. I've heard SSI is very hard to get. I just want to get back to where I was or close, to be functional. If I can't, it's going to suck. I feel for you as you seem to be young. Having something like this with the more life in front than behind would really suck. 

I live in TN. I'm 31. Been experiencing chronic fatigue since my early 20s. I'm guessing I've been dealing with this for a long time and my body cant keep up anymore. Now it's like since September 2018, I've been broken. My body is unpredictable now with a lot more symptoms. My wife use to be so mad at me for my tiredness. Any second I wasn't working I wanted sleep. 

I figure I'm headed towards SSDI. Unless I try some medicine and it works miracles for me. I'm sure they will try and get me a sit down job. My first black out was sitting down at Olive garden lol. I thought I was dying. I appreciate the sympathy. I'm definitely missing out on things I can't do anymore and things I planned to do. Sorry if I've repeated the same things over and over. I'm in so many threads and too tired to re-read everything lol.

10 minutes ago, Outaker said:

I would take Losartan.

Why and what is that? Do my symptoms remind you of yourself?

On 2/19/2019 at 8:58 AM, JimL said:

Any updates on this?

To keep it short as possible. I'm still employed. Still on short term going into long term(Lord willing they approve me for LTD). They tried to deny my short term disability and said someone with my condition should be healed by now(there is no cure). The disability manager also said my specialist isn't qualified enough because she's a nurse practitioner. She has a doctorate in autonomic services or whatever. I also told them I was referred to this specialist by a cardiologist. I said okay if I have a doctor look at my records and cosign me being off work, will that satisfy you to get my approval? She said no. Long story short, I had my specialist write the disability company a note of what my disease is. I sent them her background information. I also threatened to get my attorney involved. I didn't hear anything from them until the last day to get valid evidence in their eyes of my disability. Shockingly they approved me. Now I'm filling out things for long term disability. It's been a stressful hassle. 

So this morning, I woke up and took 60MG of mestinon. I immediately got up and did the dishes and took out the trash. It took probably an hour. So I was on my feet for an hour. 

I took my blood pressure when I was done. It was 125/96 134BPM

I layed down for about 10 minutes and took my blood pressure again. This time it was 137/85 77BPM

I waited about 10 more minutes and took it again while still laying down. My BP was 151/82 69BPM

I see my specialist on Monday and see what she says. I'm scared to take my blood pressure meds because of these Flucations and fainting episodes. Anyone else experience similar readings in similar situations? 

2 hours ago, Pistol said:

I have floaters or colors in my vision right before I pass out - they go away if I lie down in time … or pass out.  I believe that certain vision changes can be a sign of presyncope. 

Male version of🤦

16 minutes ago, Lily said:

You're seeing them in your field of vision?  It could be low oxygen, or perhaps floaters in your eyeball, or a migraine prodrome, or possibly many other things.  Do they move independently of your eyes, or are they always in the same quadrant and location no matter where you look?

It's like a few pop up and diss appear. After the first time I fainted in Oct 2017, I started seeing stars on a regular basis along with hand tingling. They don't always happen at the same time. Maybe it was happening before my first faint and I just became hyper aware of my body after that? I don't know.

It's just like seeing color specs come and go. It doesn't last long. When I was working I use to probably see them at least once a day or every other day. Now that I'm not working at the moment, I don't see them as often. I spend a lot of time resting. Not sure if I answered your question correctly.

Lack of blood flow to the brain?

32 minutes ago, Iheartfrogs217 said:

@Derek1987 thanks so much for asking! I’m not holding up well. I’m fainting so much and I’m still really scared.  How are you?? 

I'm sorry. I'm scared Everyday if it makes you feel better. I take Xanax to help with the major anxiety that has come with this. Anxiety itself seems to make my symptoms worse. 

I would go back and read this whole thread again but I'm soooo tired. My wife is sick so I went to the doctors with her and did a bit of driving today even though I'm not supposed to. Small tasks make me so tired. I took a 4 hour nap when I got home. I went out for about an hour the other day and I was so tired I had to sleep. Pathetic. When I went to the doctor with her last time, I almost had a fainting episode. 

It is scary. I can't go out to eat or do much of anything. When I do usually my body wants to faint. The fatigue is off the charts upon all of the other symptoms. Pretty much every moment I'm awake I'm suffering in some form. And the fainting part is the worst of it all. When I feel like I'm about to faint I immediately lay down. It's been working for me so far. The very first time I fainted I was at Olive garden. I blacked out. When I was coming to, I couldn't move or even speak. I was still sitting up. When I got into the ambulance and laying down of course, I remember the paramedic telling me my blood pressure was coming back up. By the time I got to the hospital and talked to the doctor it was like I regained all my strength but I was drained.

I'm very new to this so I know the vets have a lot more knowledge than I do. But don't feel like you are alone. 

Are you seeing any specialists? Have you been diagnosed? What are they doing for you as far as treatment? What tests have they done?

6 hours ago, SueOKray said:

Not sure about the Jackson, MS area but there is a clinic in Birmingham, AL.  It's about 250 miles from where you will be moving to.

Ouch. 

The wife and I are looking to move somewhere around Clinton, MS. That's outside of Jackson, MS. I was wondering if I could get the right medical treatment in that area. 

I get headaches all the time. I have high blood pressure when it wants to be high. Sometimes not. It's all over the place. I think some of them are tension headaches. I'm stressed because of my condition and work future. 

I get hot extremely easy now to where I start shaking and feeling nauseated. Sometimes I wake out of my sleep with a rush of heat as If my face is near a flame and my forehead starts sweating. Then I'll turn my box fan on me. I have an a/c window unit on while heat is on coming through the vents. Just the feeling of hot air makes me sick. 

I remember driving in 30 degree weather and I couldn't turn the heat on. I wanted to but it makes me feel so bad. Right now I'm feeling ill because my wife is cooking in the kitchen and it's warm. 

The other night I was sitting in my car talking to my friend on the phone. I was battling with me wanting heat on and off. I had it on and after 20 mins of turning it on and off, I felt like I was going to faint. I got off the phone and went to my bed immediately.

My body temp can go from hot to cold in an instant. Not as extreme as the original posters friend. But something definitely isn't right. And when you have a family of 4, and they are all female, they don't understand my struggle. They get cold easy. It's just difficult all around. Crappy disease.

14 minutes ago, Pistol said:

Dear @Derek1987 - after years of having to be frequently hospitalized for IV fluids when I was in a POTS flare I now have a port and get IV fluids at home weekly. I am greatly improved with NO syncopal episodes in over 4 months ( my previous record wax shy of 11 weeks ). However - current consensus is IV fluids for POTS only to be given in emergency situations or on a short-term basis. The risk of repeated IV access peripherally or long-term access as in a PICC line or port ( blood clots, infection, phlebitis ) has to be carefully considered by the physician. So - methods such as increased fluid and salt intake, compression hose, exercise, lifestyle changes and medication are usually tried first and IV fluids only if nothing else helps. It took years of displaying continuous improvement following IV fluids and no improvement from other avenues in order for me to be approved for long-term IV fluid therapy.

That's crazy. I'd probably have more fainting episodes but I'm glued to the bed because I feel worse if I'm not laying down. When you have your fainting episodes, do you pass completely out every time? I only went completely out once but have had several near fainting episodes or as if I'm going out but stay awake.

3 hours ago, Pistol said:

Hi @Derek1987 - I respond extremely well to IV fluids given over 8 hrs  but I do drink Gatorade inbetween - it is high in sodium and potassium. Other drinks that help me are salty broth and ginger ale with added salt ( tastes better than you think and the sugar/salt mix in addition to the GI friendly ginger are good for my POTS symptoms. 

How often do you get IV fluids? I was on my feet earlier doing the dishes for about 20 mins. I was okay until the final couple minutes. Shaky and flushed. I want to sleep to stop the suffering. It's been a few hours since. I did drink a Gatorade though.

Reading these forums I see people mention getting IV fluids etc. Is there a drink out there that will also help? I bought some Gatorade but it doesn't seem to have many ingredients in it. Mostly sugar water. 

I've had like 4 or 5 in the past year. My only ones ever since I started fainting. So sounds like I need to stop.

Apparently I looked like a ghost white corpse when I fainted at Olive garden. Ah the memories. 

If I take a bath to relax, I barely fill the tub. Like 1/10th. If i do more I don't feel well. Even heat from the vents kills me. Last night I went outside in the car to talk to my friend on the phone. I kept having to adjust the heat settings. My body is like your cold so I turn the temp up but it makes me feel bad. My friend put me on hold and then I felt the faint territory coming on. I hung up and got in the bed. I have a window unit in my bedroom I run while the house heat runs through the vents. Kills my utilities but I have no choice. Thankfully my wife doesn't have much of a problem with it. She likes to sleep cold. I'm dreading the summer coming up. 

9 hours ago, bunny said:

There's a lot of technology out there which is just starting to trickle into cars.  Because of the ways cars are designed, the tech in them is usually a good 5 years behind the consumer electronics market.  Sometimes up to 10 years behind.  

Here's just a few things I mentioned in my earlier post:  

Here the car is judging my attention/driving performance. In this case I'm wide awake and feeling good.  If it thinks I'm tired/out of it, the car will suggest that I should pull over and take a rest.  Other things displayed: Green steering wheel = car is driving and steering for me.  Speed limit sign = last speed limit sign the car's cameras have seen & read. It also sends this data to nearby, similarly-equipped cars via 4G.  Green car + speedometer = Car is controlling throttle & brakes and will do a maximum of 70 mph, as set by the cameras reading the speed limit signs.  If the speed limit changes, it'll automatically adjust accordingly.   Likewise, it'll slow down/stop to match traffic around me.  Officially, this is a "driving assist" system, but the car's systems are designed for full autonomous driving. 

 

Here the car's performing an attention check on me because it's not happy about my driving.  If I don't react by tapping a button on the steering wheel or actively steer, it'll turn off the stereo and start demanding that I interact with the car.  If I fail to respond appropriately, it'll then start the shutdown sequence, slowing the car down, pulling over, and calling for help. 

 

The interesting parts of the seats are mostly invisible and looks normal.  The headrest changes from factory are well-integrated, but still visible.  The photos don't really show how deep the curve is, but the sides go forward to my ears and holds my head still.  The extra padding is there for comfort & safety.   

This car really does help me. It's been an absolute blessing.  All of the advanced features keep me safe first and foremost, but they also make driving easier which allows me to drive for longer distances before I need to take a rest.  

Looks and sounds expensive 😨

29 minutes ago, Potsie1990 said:

I have tremors as well also. I tested and was found to have adrenergic issues. 

What kind of test did they do? I did a 24 hour urine test/blood work and a CT scan on my adrenal glands. I don't know any of the results yet though. My hands tremble. Especially when I'm exposed to heat. Sometimes just for no reason. They actually have shaken my whole life it's just gotten worse. Or maybe that's marriage? Jk

2 hours ago, Iheartfrogs217 said:

Hi all! I’m so sorry I am so late in responding to this!! It’s been a while since I logged in. I forgot I made a post here...brain fog. I just wanted to thank each and every one of you for your comments and support!! It means so much in such a trying time. I hope you all are well! 

How are you holding up?

10 hours ago, potsiebarbie said:

I actually may try that. Who knows? Maybe we'll get some use out of that dishwasher. 

I'm telling you... Your dishes will always come out clean when you use this. I learned this from my mom. My dishes had spots and food particles in it without this stuff. If this doesn't work for you, well .... I don't know I'd be shocked.

40 minutes ago, WinterSown said:

You can PM each other through the DINET messaging system.

 

 

Yes I use that function as well. I was just saying a chatroom for conversation in real time if people wanted to. between groups. It was just an idea. If nobody sees the need for it, then that is fine as well.

3 hours ago, Pistol said:

Is this forum not like a chat room?

Yes just a slower form. I'm not saying get rid of the forum. Some people just might like to chat sometimes. 🤷‍♂️