Derek1987

2 hours ago, Pistol said:

Hello @Derek1987 - the medical  conditions you are listing are all SYMPTOMS, not actual diagnosis ( unless your doctor feels they are separate conditions and not related to dysautonomia ). I also advise you to get an attorney if you are having difficulties. I called my local SSI office and had them help me with my initial application. Then they were able to retrieve my personal medical info from my medical record and the process went on from there. But I had a lawyer take over after my initial denial. 

Can you give me an example of a condition that you put that social security deemed as a disability? I'm really lost now lol. I don't have an underlying condition found of why my body does those things listed. At least yet. I thought autonomic neuropathy dysfunction would be a condition. 

3 minutes ago, KiminOrlando said:

Get another attorney. That is a lazy attorney. They won't charge you less if you fill out the first set of paperwork by yourself, right? Do they charge a flat rate or a %?

Mine wanted to fill out the paperwork so it made the fight easier. Once it goes on paper to Social Security, it is evidence. 

Most make you fill out the paperwork, but the good ones don't.  I paid a % of my payout if I was approved. It was worth every penny. 

It is a LOT of paperwork for a healthy person to handle. How is a sick person supposed to do it all correctly? 

What state are you in?

I'm so uninformed. I don't know how she would be paid. I asked her what if I win the first time, she said usually cases go to a law judge. She's expecting me to be denied at first it sounds like.  

I'm doing my application through the computer. And yes it's taking me extra time to fill it out because it requires energy and focus lol. 

I live in TN.

2 minutes ago, KiminOrlando said:

I strongly advise you to get an attorney.  It took 4 years WITH an attorney for mine to be approved. 

My attorney filled all of this out for me.

My attorney told me to call her when I'm done applying. If I'm not mistaken they would probably rather you be denied. The more backpay, the more money for them. Idk.

So I'm filling out the application(advised by doctors to do so) and I am at the part where it asks for medical conditions. I am going to post what I have so far. Screenshot in the link below. I know disability requires you to meet a listing in order to be considered disabled. I'm trying to do this right on the first go around so maybe I can be approved the first time instead of waiting 3 years like my wife. Honestly I can't financially wait that long. I need to get this right on the first shot if possible. I know it's unlikely to be approved for the first go around but maybe I will be. If you have any advice on the screenshot or keywords they are looking for, or any advice please help me out. I have a lawyer that I consulted with but I believe they don't do anything until I'm denied the first time. Thanks for your input and wisdom.

https://imgur.com/lObkHxO

18 minutes ago, Conrad_hemsley said:

All,

Male, 28 here. Have had pots for 2 years, the last year of which bedbound. In the past couple of months things have been going downhill rapidly.

i keep on getting severe adrenaline storms, some of which last for multiple days, where I am extremely wired, high heart rate, can’t sit still, no sleep, etc. The thing is, about 5 days after these storms I am getting a huge relapse, where my OI is worsening very much. Lately, this has gotten bad to the point where I’m now not able to get out of bed, barely able to sit upright, not able to have a pillow under my head, legs raised under a pillow most of the time, peeing in a bottle, etc. The dizziness is so extreme that I wake up in the middle of the night to put something under my legs. My POTS is so bad that my body otherwise compensates for the lack of blood flow to the brain by sending more adrenaline in my system, leading to another storm, leading to worse pots, and on goes the vicious circle.

I am now at the point that I don’t know what to do anymore. It seems I can’t get out of this downturn. I’m on propranolol, 15mg pd, my body is not able to handle more. My doctor says I should just rest but rest isn’t doing it anymore.

What can I do? Should I let myself be taken into a hospital? Is there anything I can do to stop the adrenaline storms? Advice is much appreciated!

 

I'll pray for you brother. I seem to be getting worse with the adrenaline storms. I take xanax. It helps to a degree. The only time I'm not tortured is when I'm asleep and don't realize I'm alive. I'm still a newbie to this sickness on how to get well so I'm sure others will have better advice. Stay strong. You aren't alone.

1 hour ago, JimL said:

Alcohol is a no no with POTS, at least that's what I've read. Does other food affect you? I know mast cell activation disorders can cause POTS and food factors in big time. 

So far it seems like only alcohol and spicy food has given me problems as far as causing fainting issues(other than being up too long). I feel like crap everyday so I'm not sure if food is a cause. I basically feel the same every day. Adrenaline surges throughout the day/night. Blood pressure all over the place. Feel like throwing up a lot but haven't actually thrown up. Hands tingle when I'm up for any period of time. Upon many other issues. A miserable existence lol. 

8 hours ago, Pistol said:

Hi @Derek1987 - when I started Carvelidol I had to keep increasing the dosage to get my HR under control. To address the high BP we added Diltiazem which regulates BP by dilating the blood vessels. Those two together have been very helpful for me and mt sisters as well, who have the same type of POTS as me. 

Could the diltiazem possibly increase chances for fainting? When I drank a glass of wine at Olive garden, I blacked out right as I was finished eating. Another time I took a cayenne pepper pill and maybe an hour or so later I was in the ambulance. I didn't black out though. My body was trying to faint. Then I ate some peppers a couple months later and felt it coming on. Which I think these things dilate blood vessels. Correct me if I'm wrong.

So before the beta blocker, as soon as I stood up my heart rate would jump up instantly. Now I guess it slowed the process down by 10 minutes. Maybe less I haven't tested it that way. But if I'm up for 45 mins or so, my heart rate and blood pressure are through the roof like I'm not even taking it. I got hot and felt like passing out was possible. I'm taking carvedilol 3.125 mg. If I'm laying down my heart rate is high 50s low 60s. Standing up its in the 90s. So I'm like great this is working. Yet my pressure is still mostly high. But if I do an activity on my feet it's back to the same ole problem. 130s/40s/50s. When I took my blood pressure after washing the dishes just now it seems like my heart beat is irregular. A heart picture shows on the screen for every beat. It was going 1000mph then stop and beat slow a couple of times. Back to 1000mph and do it again. I don't know I'm pretty discouraged. We plan on moving soon. I don't know how I'm gonna do it. 

The clinic in Nashville everyone keeps mentioning is probably what I'm gonna have to do. I can't keep living like this. I have too much to do. 

11 hours ago, JimL said:

Do you have sleep apnea at all?

I used to take benedryl when I couldn't get to sleep. Now I fall asleep pretty easily. Thing for me is not to try to go to sleep too early unless I am really tired. It's like I can't tell myself to sleep, but if I try to stay up past 10, I go to sleep. It's like reverse psychology. My problem is staying asleep. I tend to wake up at 3am for no reason and then it takes an hour or more to get back to sleep. I use a CPAP too. Before that, I would start to nod off when driving in the afternoon. Not good. CPAP cured that tired feeling during the day, but I haven't gotten 8 hours straight in a long time. Years maybe. 

I took a sleep apnea test after my last day at work. So probably October 2018 or somewhere. They said I didn't have it. Although I know I can't sleep on my back. I can't breathe on my back.  But yeah they said I didn't have it. I've taken benadryl for years to sleep. Even though I I am exhausted, I still need something to make me sleep. I guess now I know why. The adrenaline problems. 

2 hours ago, aelizabeth3300 said:

The beta blocker propranolol mostly worked for me. It didn't completely stop the surges, but it made them less frequent and less severe when I had them. Unfortunately now I can't take beta blockers as I have an AV block. They prescribed ivabradine. I haven't started taking it yet. 

What is an AV block and what's the purpose? I'm suffering from an adrenaline storm now. It's a daily thing now. The suffering is real.

I take Xanax to help me sleep(or just general anxiety during the day) but it never gives me a deep good sleep. And that's 2mg. I woke up after 4 hours even though I'm exhausted. I went to 3 different places today and I feel I'll, exhausted, and major hand tingling for some reason. 

How do you manage to get good sleep? I'm so tired and my body won't calm down enough to sleep. 

2 hours ago, bombsh3ll said:

I'm sorry you've found yourself in this place, but at least there is some consolation in getting support for your disability case. The way I see it, my condition and the severity of it are what they are, and giving up work, receiving disability benefits, using a wheelchair etc make things easier for me, not worse if you see what I mean. 

Just know you are not alone in this. 

B x

Yes I see what you mean. There's no way I can do anything at the moment. I almost fainted at my appointment yesterday lol. 

Then I went to a couple places today. Not much walking just sitting. My hands are tingling pretty bad right now. Might be signs of fainting coming on. I'm laying down alone trying to calm myself.

This is hard. I hope the disability process goes quickly as possible. My wife had to wait 3 years for hers. She has bone/nerve problems. And now that she's gotten approved, my body finally just broke down at the right time I guess lol. I pushed through sickness I didn't even realize I had. We are both in our 30s on senior citizen status.

My psychiatrist looked at my results from my adrenaline test and consulted with his neurologist buddies and said I'm done. He told my wife to call a lawyer he knew to start for government disability right there during the office visit. He used words like dangerous, no balance in the body, this isn't just a mind thing. Mind you, I had sat in the lobby for an hour and a half and started the fainting process. I was going outside to lay in the car and he called me back. Luckily I didn't faint. My hands were sweating the whole time.

It seems like I can't do much of anything but be bed ridden. If I go out somewhere this happens. I had my medicine that's supposed to reverse the fainting but I had nothing to drink. I guess I need to start carrying a bottle of water anywhere I go. 

He also mentioned it being a hereditary disease. My dad's hands shake and he takes a beta blocker for a high heart rate. He also drinks daily, smokes, and not sure if he does drugs anymore. My psychiatrist was explaining how the disease can progress and be worse in the next generation. So I think my dad has the same disease but a milder form. I think he's been copping with it with drugs and alcohol etc. My hands were always shaking all the way back to my childhood. So I probably have had this forever.  Now it's just getting worse. 

Bad news. But I can use it for good. 

37 minutes ago, JimL said:

http://www.dysautonomiainternational.org/page.php?ID=43

 

 

Yes here we go. Thanks!

I've gained like 10 pounds since being out of work in September. Most of the time I feel like garbage and don't feel like doing anything. But I want to still try and be healthy. I'm not sure if I can. I'm sure laying down a lot doesn't help circulation either. Can a vibrating massage chair or something improve circulation? 

Any tips on this stuff? 

2 hours ago, JimL said:

My cardiologist said 20-30, although the vascular doc I went to years ago specified 30-40. You really need to measure your legs so you get the right size and the pressure is in the range specified. 20-30 is a good starting point. If you have a cardiologist or vascular doc, ask them. Maybe your PCP would know. Learn how to put them on right too as you don't want to damage them with runs. 

I see my cardiologist later this month. I'll see what he says before I buy. Thanks for the tips my friend.

3 hours ago, JimL said:

Oh yeah, open toe is a little easier to put on and more comfortable, at least to me. 

Thanks for the reply. I'm checking out this website. I see they have different compression levels. Is there a certain compression level people with our condition should be looking at?

My specialist told my to buy some compression socks. Any recommendations? 

On 2/27/2019 at 4:05 PM, potsiebarbie said:

Anybody get a weird feeling like your heart is gonna stop or you are gonna stop breathing? I know it sounds weird, but it really bothers me. It comes and goes and other than that I pretty much feel like I'm on autopilot. I have constant unsettling derealization and depersonalization. Not getting much help from docs.

Funny you say...I check my to see if my heart is still beating sometimes. I think it's out of paranoia because my heart doesn't act right. I feel a huge increase in beating just from moving to a different position in bed. Plus all of the palpitations. I basically worry I'm gonna die everyday. I start my new medicine regimen today so we will see how that goes.

Thanks peeps.

So let's say I wake up at 9am tomorrow to start my 24 hour collection. I understand my first urine, I don't collect it in the jug. I go in the toilet like normal. The urine after that I start to collect for the next 24 hours. Let's say I wake up at 8am the next day. Do I urinate in the jug with my first urine of the day?

3 hours ago, HangingByAThread said:

Just offering my two cents............does she mainly use non-stick pans?  Wondering if it could be something in the coating that is bothering you.  Also, what about food allergies?  I have food allergies and can't be around my mother when she's cooking shellfish and can't be around others eating peanuts.  Could something like this be contributing to your feeling ill?

No food allergies. I believe they are non-stick. Perhaps it is in the coating. I mentioned it to my autonomic specialist yesterday and she pretty much confirmed that's a normal reaction for people with our condition. Maybe not everyone reacts but some do.  Thanks for the replies everyone.

13 minutes ago, JimL said:

Some smells for me, sounds more so. Does light bother you at all or motion? I used to be able to stomach anything and be swung by my feet on a chandelier, but now, lots of stuff sets me off. 

My favorite place to be is my dark quiet bedroom. I have the windows blacked out. Sounds of conversation or tv seems to get my adrenaline going sometimes. I'm always telling my wife to turn the volume down on the tv or her phone. Light bothers me when I get my frequent headaches. I really need to lay off of the aspirin. I'm not sure if this is what you are referring to. When I go anywhere public now my hands are sweating. Adrenaline and anxiety flowing.

3 hours ago, Alex D. said:

I am hypersensitive to a lot of smells.  Some will make me fill I’ll to my stomach.  This seems to come and go for me.   It can be food smells, perfume, flowers, etc.

Yes. I feel sick to my stomach as well. Insane. I see my autonomic specialist today for the 2nd time ever. Gonna bring this up. I'm really looking for a proper diagnosis. I've learned a lot from this forum. Thanks for the reply.

Not because the food is nasty lol. Whenever she cooks, even if I'm in the back of the house, I feel flushed and ill to where I feel so bad I just want to sleep. I know I have a major heat intolerance problem. But I'm thinking this has to be related to my sense of smell as well?

When I was working I remember not feeling right when they used the popcorn machine. But I was at least 20-30 feet away from the machine in a different room. I feel Ill and shaky when I'm around cooking. Can anybody else relate or offer an explanation?