Derek1987

I think it would be cool to add a chatroom feature for informational purposes/support/friendly chat. Just an idea. 

On 1/14/2019 at 5:59 AM, Pistol said:

Dear @Derek1987 - my PCP wrote a note that specified I can not walk more than 200 feet ( based on that is when my symptoms start, not necessarily the fainting ). At work I also - in addition to a desk job - had to use a wheel chair per human resources department. But in the end that too was too much. What finally drew the last straw was the fact that I was too unreliable to work b/c I had to miss so much work and call off due to my symptoms. - Your PCP needs to clarify your abilities, if the nurse is not willing or able to then you need to make an appointment with the doctor and go over it with him. The more specific your restrictions are spelled out the better it is , for insurance purposes as well as for SSDI in the future.  --- I would get the gears rolling and apply for SSDI - even though you probably will be denied initially, but it will get you started. It took me 2 years which is common. And you truly are not able to work from what you say. In my case continouing to work and pushing myself made my POTS worse. At least you will have some income from your wife's SSDI in the meantime. Hang in there - it will get sorted out. 

My doctor wrote up restrictions for me. Initially the disability company claimed they had no restrictions form for my doctor to fill out. Now that my job has approved my absence, the disability company sent my doctor a restrictions form.

The doctor wrote sitting or standing for extended periods of time will cause fainting. Also no bending or lifting because the potential to cause me to faint. The disability company STILL isn't accepting that. I received a letter in my email stating they received my restrictions and it's not enough to support my claim. They need restrictions and all doctor records from December first to present. Which isn't much because I'm pretty much waiting to see the autonomic dysfunction specialist. So I have another paycheck I won't be getting. That's 3 in a row and rent is coming up.

I called them and asked why they need restrictions. They said they need the most up to date restrictions. I was like this is from Friday and covers me until I see my specialist on February 25th. Then he was like okay the restrictions should be good just to get them the doctor records. Which is basically a visit to my psychiatrist for my Xanax prescription refill. And I did take a CT scan on my adrenal glands. That's it. 

They are really trying to screw me. I have enough medical evidence already. I have creditors calling me. My policy for rent is if I don't have it by the 6th, they start the eviction process. And I don't need that on my record because I'm trying to buy a house this year. Wondering if I need to threaten them with legal action. 

Monday I had a near fainting spell at my wife's doctor appointment. 2 hours of sitting. Just a few minutes ago I put some clothes in the dryer. I was probably on my feet an hour or 2 today. So I put the last load in the dryer and start walking to the kitchen. Bam I feel the fainting coming on. I rushed to my bed. This terrifies me. Other than the dangers of hitting my head or something, how dangerous is fainting? It is so scary.

On 1/16/2019 at 10:49 AM, potsiebarbie said:

For coffee drinkers, what's your favorite way to have it?

I'm sitting here drinking my eight o'clock coffee with milk in it feeling like I could use a change! 

Honestly I only drink coffee to get a boost. No matter the flavor or whatever. I'm a coffee rookie, BUT since September after my 3rd faint spell, I can't tolerate much caffeine anymore. It makes me feel sick and shake. Even too large of a Coke will have me messed up. I found this out by drinking a large Coke from McDonald's. I was so sick I missed one of my doctor's appointments. Then I tested the waters again, same result. Boo.

45 minutes ago, potsiebarbie said:

Funny thing is we have a dish washer, but don't use it. We found that we had it clean the dishes before or after anyways. 

Have you tried using rinse aid along with your dish washing liquid or pods? Makes all the difference for me. When I had a dishwasher that is.

https://ship.kroger.com/p/051700369300/finish-jet-dry-rinse-aid-80?&cid=shp_adw_0000.ship.Delta+Ship+-+Dishwashing&gclid=EAIaIQobChMI-ObWnrj63wIVHP7jBx1f3ApREAQYASABEgK-YfD_BwE&gclsrc=aw.ds

11 hours ago, potsiebarbie said:

Yup! I want to get a stool specifically for doing dishes. 

You ever thought about getting a dishwasher or one of those portable dish washers that you put on the countertop? 

I don't have a dishwasher in my house. I just attempted to wash dishes. My wife and step daughter went out of town so I'm alone. Started getting hot. Not one dish was washed. Feeling pretty sick now. Can ya relate?

On ‎1‎/‎17‎/‎2019 at 2:30 PM, Bicksa said:

Hello!

I was diagnosed with dysautonomia (we suspect I have POTS but have not yet diagnosed that) in December,  and started on Bisoprolol to lower my heart rate. I suffered with symptoms for over seven months, during which time I was unable to work.  I just started back to work but I am struggling! I wear compression stocking, eats lots of salt, spend 90-95% of my shift sitting, and make sure I have cooling packs. However, my symptoms (nausea, dizziness, pre-syncope, and overheating) plague me throughout the day. Any tips? I can't work more than once a week for 8 hours. I spend the next 2-4 days battling horrific symptoms and extreme fatigue. 

Help! Any tips to help survive working?

Wouldn't it be more be beneficial to go on disability? I'm out of work and I'm not so sure my PCP really understands how bad off I am. I'm waiting on her to write restrictions for me to continue my short term disability hoping she does the right thing. There's no way I can go back to my job in this condition. My job consists of standing and walking the whole day. I've fainted from sitting and standing. It's been hard for me to accept I might not be able to work anymore. My wife doesn't seem to think I'll be working anymore. Sorry that I don't have any tips. I'm new to this. But hey you aren't alone!

On 1/16/2019 at 5:45 AM, Pistol said:

@Derek1987 - 

NCS is neurocardiogenic syncope ( also called vasovagal syncope ) and OH is orthostatic hypotension. Both are dysautonomias and can share symptoms with POTS and they all can be diagnosed with a TTT. 

 

Oh Derek - this is EXACTLY what happens to me in a store!!! When I am there I race through the aisles throwing anything I need in the cart just b/c I know I only have so much time before I need to leave the store and lie down in the car!!! It drives my husband crazy ( he is the slow and easy-going type and likes to take his time comparing prices etc ). And I have fainted many times in doctor's offices ( and stores and hospitals and church .. and so on ). Only 30 % of POTS patients actually faint - but many ( myself included ) also have NCS which contributes to the frequency and severity of episodes. Fortunately POTS and NCS share the same treatment. I am not sure if you had mentioned this in another post but - have you seen an autonomic specialist? Not just cardiologist or neurologist but rather and actual autonomic specialist? THEY will be able to differentiate your type of dysautonomia whereas many MD's that treat POTS are not actually knowledgeable in all of the intricacies of these conditions. 

Have I seen an autonomic specialist? Yes. I've only seen her once though. Waiting to see her again. She has me on mestinon to slow my heart rate down. She claimed it would heal my nervous system. So far, I'm still the same. 

I did a few tests that day I saw her. So far, Rocky mountain was detected in my blood work. She claimed it damaged my nervous system. I did a tilt table test. Laying down 81 standing up 126 BPM. My blood pressure was high in all positions but my heart rate changed. I did a 24 urine test but I don't know the results. The brain MRI came back pretty much normal.

She showed me a graph of a person upright and how blood fails to reach the brain over time. Then she also said she doesn't think I need compression stockings. She just thinks my adrenaline is in overdrive. So that confused me. I've fainted and had several near fainting episodes. I know my adrenaline is in overdrive though. 

On 1/15/2019 at 6:57 AM, andybonse said:

Pretty much a normal MRI

Thank you for your response.

1 hour ago, Help4Me said:

Did your doctor say how to fix the adrenaline in overdrive issue......

She said that's what the mestinon is for. It slows my heart to a degree but I'm still in fight or flight mode most of the time. She claimed the mestinon would heal my nervous system. She was talking about how western medicine only treats symptoms. She said the word heal and of course I'm highly skeptical. And more so now since I see other people take it on here and still have issues. I also take Xanax. Not prescribed by her. It helps but not 100 percent. Monday I had a CT scan on my adrenal glands to see if I have any tumors on them. I don't think I'll have any. Anxiety has been a problem for me since childhood. It went into overdrive after I blacked out for the first time in Oct 2017. PTSD for sure. 

My wife would tell me nothing is wrong  and sometimes people just faint. Everyday I would be like am I  gonna faint am I gonna faint? I would see stars and feel pins  and  needles  in my hands. Fast FWD to September 2018 and I had 2 near fainting spells within the same week including one at work which both resulted in ambulance rides. After the one at work, it was like I was broken. I haven't regained my strength. I was always exhausted everyday but now I experience so many other symptoms. And I've had a few more near fainting spells since including that one this week. 

On 1/14/2019 at 11:38 PM, Scout said:

Hi Derek,

I really relate to that — I have these sudden spells, too, and have fainted a few times because of them.  

Recently, one occurred out of nowhere and I was surprised I didn't lose consciousness. I felt very hot, and my whole body was pulsing. My brain seemed to sort of "freeze" and not work, and it felt like the floor was falling from under me. 

The symptoms you are describing do very much so sound like Dysautonomia / ANS dysfunction (of course, I'm not a doctor, though). Do you have a specialist you've seen? 

Yes. I've only seen her once though. Waiting to see her again. She has me on mestinon to slow my heart rate down. She claimed it would heal my nervous system. So far, I'm still the same. 

I did a few tests that day I saw her. So far, Rocky mountain was detected in my blood work. She claimed it damaged my nervous system. I did a tilt table test. Laying down 81 standing up 126 BPM. My blood pressure was high in all positions but my heart rate changed. I did a 24 urine test but I don't know the results. The brain MRI came back pretty much normal.

She showed me a graph of a person upright and how blood fails to reach the brain over time. Then she also said she doesn't think I need compression stockings. She just thinks my adrenaline is in overdrive. So that confused me. I've fainted and had several near fainting episodes. I know my adrenaline is in overdrive though. 

4 hours ago, Pistol said:

@Tiredtoday - I am sorry that you have to be on this forum, but at the same time I want you to know that we completely understand b/c most of us have been in your shoes! -- First of all - if you have POTS your TTT will probably show something to prove that. You may get POTS or NCS (VVS) or OH - but they are all dysautonomias. From what you are describing your symptoms can very well be POTS. Do not worry until you have reason to - often our fears are worse than the disease!!!! And - just to address your worry - IF they claim your symptoms are psychological in nature then you just go to a psychologist, get evaluated and prove to them that your symptoms are not " in your head ". Many of us - myself included - had to go that route just to shut up the sceptics. 

Hey Pistol. FYI you have been my MVP on this site with your help and knowledge. What is NCS or OH? I too am wondering what my condition could be as I don't think I've been diagnosed. My tilt table showed my heart rate jump up from 81 to 126. I had a near faint episode at my wife's doctor appointment yesterday(scary). Today I actually went grocery shopping with my wife. She was mad at me because I was rushing her. I'm explaining to her I don't know how long I'll last and I don't want to end up at the hospital. The last few sentences were random sorry. But yes what are those other conditions you mentioned?

25 minutes ago, dannyg said:

Check your blood pressure when that happens. Last week affer taking that Florenef to raise my BP I felt terrible and my hands were real red. When my BP is high, my hands do that.

Do your arms turn red as well as your hands? Do your veins pop out? 

47 minutes ago, Pistol said:

Hard to tell due to the difference in light. You have to make sure that the picture is taken with the same light source. 

Okay I'll do a retest.

 Notice the change in color. Trying to gather evidence for my next doctor visit.

Today I went to the doctors office. It was an appointment for my wife. My anxiety was up. My palms were sweating the whole time. My hands were red and veins were popping out of my hands more than usual. I've noticed my whole arms from the elbows to the hands turn red with my veins popping out when I do a couple basic chores around the house. I was also nauseated and had a weird feeling in my gut. Not anything new.

Anyways we sat there for about 2 hours in the lobby then finally get called back. I was talking to my wife and in mid sentence it felt like I was going out. I got hot, my breathing was heavy and my heart rate jumped up pounding out of my chest. I layed back in the chair for about 10 minutes trying to calm myself down.

The doctor finally came in and we left. For the record I have blacked out completely once. And multiple times where I felt like I was about to pass out. I've had near fainting spells where my body is actively trying to faint without a break but I stay awake. Then I have these episodes where it feels like I'm about to go out and I somehow fight it off with trying to relax and lay back or lay down. My wife says I need to start going to the emergency room when this happens to leave a paper trail. But they never help me and I'm already stressed and don't want to hassle with it. I think next time I'll have to go ahead and go. What do you guys make of what I experience?

1 hour ago, statesof said:

Hi @Derek1987 I don't know the full nature of what you can and cannot do physically as part of a job, but what I had to do was get a powered wheelchair because the walking around the office was too much for me and my meds only partly helped for that, having this device has allowed me to not have to worry about my POTS symptoms limiting me (for the most part) when I need to work around our office.

There are also just certain career options I would love to do but cannot simply because my physical limitations, so I pretty much have to do a job where I sit at a computer. I had to just think tactically about what I can do, and where am I limited? And how can I utilize a technology or medication so that I can work sustainably. Hope some of this helps.

Well the update is my doctor wrote me a note that my employer accepted. I am no longer under the threat of being terminated at this time. They can if they want because my FMLA is up.

I was talking to my PCP's nurse. She handles the notes. She wrote up my restrictions on a different note for the disability part. I was explaining to her I can't stand up for long periods of time. She said my doctor records from my specialist don't give me a case for that claim. Even though I had a follow up with my doctor and explained to her what the specialist told me.  My specialist told me not to drive. She said it's safer to take baths. She told me the longer you stand, the less amount of blood gets to your brain. I have faint/pre faint episodes. The Tilt table test showed my heart rate sky rockets when I stand. So I'm not sure if I convinced the nurse or not to write me restrictions that take me off of work. I work in a pharmaceutical warehouse. My job.... I am on my feet pushing a mobile computer around. I'm on my feet the whole day. I have to be because I move product around. That's how I came on short term disability in the first place. It was my 3rd fainting episode and I had two within a week. The 3rd was at work. I felt a weird feeling in my gut then I collapsed. I could feel my body trying to faint while I was laying on the ground waiting for the ambulance. It went away in the ambulance then came back while I was at the hospital. When they gave me Ativan my fainting feeling went away.

So the note for my employer says my specialist recommends me to be off at least until I see her next time. So if my restrictions for disability say I can work, it'll make no sense. I don't understand why my PCP won't just back me 100 percent. My specialist sent me a message through the portal saying my return to work timeframe depends on my next visit with her which I haven't had yet. My PCP has seen this message herself. So we will see. It's been a mess. If they say I can work now, I'll probably just have to quit. Or just go up to work and get sick again. But I do have faith in God so whatever happens, I'll be okay. I'm just anxious to get to where I'm going.

22 minutes ago, gossamer4448 said:

hey guys, so i have been drinking a fair amount of water id say 2 liters a day sometimes a little more or less. and ill have darker urine in the mornig  but then after just a bit of water like 2 glasses  its light yellow and has been sometimes clear .im worried about drinking too much as it seems im not dehydrated at all i dont know what to do .  I know drinking too mcuh depletes me of salt but i have hig bp so i cant load up on that either.

I don't know enough to fully answer your questions. But I do know the more fluid you intake, the higher your blood pressure will be. My urine is always darker in the morning.  Maybe someone else can shed some light.

Sorry if this is the wrong section. My wife received a fully favorable decision in the mail today for her health problems. It doesn't say how much she will get. It went to the hearing level. I'm assuming our next step is to visit the social security office and give them our banking information? If that's the case, how long until a payment is issued? It's my understanding she will probably receive backpay later. I'm just anxious to know because now that I'm sick and my short term disability is still pending an extension, we are in bad shape financially. Thanks for any knowledge given!

I've only seen my autonomic dysfunction specialist once. She said I don't need compression stockings because my blood pressure was high (along with heart rate upon standing). At the same time she showed me a chart as if I was receiving a lesson in school of a person standing up and how over time, less and less blood gets to the brain. Wouldn't that be a drop in blood pressure? Or no? I'm confused. When I fainted the first time the paramedic said my pressure was coming back up in the ambulance. 

I honestly don't trust any doctor. I always do my own research.  And most doctors have egos. Not all of them. Don't get me started on hospital doctors. 

9 hours ago, Pistol said:

@Derek1987 - it is the responsibility of your PCP to determine your ability to work. My autonomic specialist even has it posted in his office that he does not give restrictions - that patients are to go to their PCP for that. In my case I worked for 4 years with POTS, I kept passing out and they accommodated me with giving me a desk job and less hours but I still was unable to work due to syncope and seizures. I also am not allowed to drive ( and I live 1 hour from where I used to work ). My PCP had wanted me to quit working for years but I was the main bread winner and kept at it Eventually I used up all of my FMLA and had to face the reality of stopping work. I had both short term and long term disability insurance and my PCP wrote a note that I was unable to return to work indefinitely. Since there was proof that I was unable to work despite my employer accommodating me this was accepted by the insurance company. I am now on SSDI. So - yes, your PCP is responsible to determine if and when you can return to work. He also is supposed to give a time limit i.e. until next appointment, 6 weeks or until syncope-free for 3 months - something they can go by. And no - the insurance company is not supposed to have a note from all of your doctors since this is absolutely up t your PCP. Also - yes, a comment on the patient portal is part of your medical record. But to be precise I would ask your PCP to write a note that you can give your insurance company. --- I feel for you b/c I had to go through the same thing and it was hard. Hang in there!!!!!!

Thank you for your replies and support. I got a response from my employer on what they are looking for the note to say. I took it to my primary care doctor today. Again. I know they are getting sick of me. I have to turn it in by Thursday or I lose my job. Just from that trip I'm trembling, nauseated, and have that same weird feeling in my gut. Lord have mercy. I gotta lay down. Hopefully this note will satisfy my job and short term disability. This is my last shot to keep my job. I'm fighting for it even though I don't think I can do it. We will see what happens.

14 minutes ago, StayAtHomeMom said:

I would try talking to your direct supervisor and see if they can do anything to accommodate you. Usually when you work for a corporation the local people you work with are more understanding. I would talk to them before you head back to work though. Or maybe your PCP can override the specialist in the eyes of your job. 

My insurance company contacted my employer about that already. I never heard anything back so I'm guessing that's not an option. The insurance lady asked me on the phone if I'd be interested in a sit down job and she would contact my employer. I was like lady i don't know I even faint sitting up. And this was after they saw the message from my specialist I won't return to work until I see her again. I was like why would I say yes and my doctor is saying no but the problem is she won't vouch for me. I'm totally getting screwed here.

It's on my primary care doctor. But it seems like my primary care doctor doesn't know what to do and are being cautious and putting it right back on the specialist. Nobody will just vouch for me. I'm basically about to lose my income. My primary care doctor's nurse is actually the one writing up the notes for me. I guess I'll have to contact my primary care doctor yet again and see if they will do a restrictions note .But the nurse already told me she can only put what my specialist said. I guess they are too ignorant on autonomic dysfunction and are covering themselves just in case. All this is doing is bringing on more heart palpitations🤦‍♂️

So I've been on short term disability since September. They stopped it December 12th. For no reason other than that was when I got my brain MRI results and that was the last test done by my autonomic dysfunction specialist. I did a tilt table, 24 hour urine, blood test, and a brain MRI with my autonomic dysfunction specialist. I did all of this within a course of a month.

They found I've been exposed to Rocky mountain. My specialist said it messed up my nervous system. My heart rate jumps up 50BPM plus 100 percent of the time upon standing. Verified by the TTT and my own tests. I am taking Mestinon now to help that.

I asked my specialist when I would be able to return to work through their online portal. She said it depends on how I respond to treatment and going over the test results the next time I see her. I actually sent that screenshot to my disability  insurance company. My next appointment isn't until February. 

Here's where the problem came in. My disability insurance company contacted my specialist. My specialist said she never took me off of work and she gave me no restrictions. Although during my visit I was concerned about returning to work and not losing my job. She said don't worry about it. She told me not to even drive. Thats a restriction technically right there. So now the disability company is making it impossible for me to get approved even though they saw what the doctor said on the online portal. In my eyes that's technically a medical document.

The off work restrictions started with my primary care doctor then continued with my cardiologist but for some reason my autonomic dysfunction specialist won't vouch for me. She said its in the hands of my primary care doctor. So my primary care doctor wrote a note saying my autonomic dysfunction specialist has me off until I see her again. I sent the letter to the disability company and they told me that's not enough information to support my claim. They want restrictions from every single doctor I go to. The problem is not all doctors give restrictions. My cardiologist said they can only cover me for the time up until I saw the autonomic dysfunction specialist. My autonomic dysfunction specialist won't do restrictions period. The nurse for my primary care doctor says all she can put on the note is what my specialist said. 

My last effort with my primary care doctor is to ask if she will write me a restrictions letter. But it seems like they aren't interested in doing that. It's as if doctors are scared to vouch for me. 

So it's either I go back to work sick and probably end up quitting because I can't handle it. Or get fired. I have a family to take care of. My wife is actually disabled from bone/nerve diseases. She was approved by the judge November 7th so we are still waiting on that. That's a positive but we literally have no income. It looks like I'm gonna have to go back to work and see how long I last. I stand on my feet the whole day. Man I am stressed.

1 hour ago, Iheartfrogs217 said:

Hi all, 

I am really struggling with all of this chronic illness stuff. I've been almost fainting while sitting and laying down. I get super flushed and red and have been red for over 48 hours. I'm also really, really nauseous. I'm so scared and could use some words of encouragement. Thank you so much! 

I've fainted or near fainted in every position.  I get flushed on a daily basis. I usually go multiple days in a row with feeling nauseated before I get a break then it comes back. I'm new to this life so I'm scared as you are. And I have no income in the household right now. The disability company for my employer is doing everything they can to get me off. So I'm stressed out on top of everything. I take Xanax to relieve my anxiety which is something I've already had. But my anxiety went into overdrive after the first time I blacked out.

Feeling like you don't have control anymore is so scary. You aren't alone. I think it's just a learning process on how to deal with this and what triggers your symptoms. I know some more experienced vets of this forum will have some more knowledge and bring you more comfort. But you aren't alone.