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Posts posted by Derek1987

  1. 23 hours ago, Scout said:

    I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick.

    Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". 

    I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. 

    I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality".

    I just don't know what to do anymore.

    It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. 

    Does anyone have any advice on how to move forward? 

    Thanks so much. 


    My moms still in denial. She thinks omega 3s will fix me with exercise. Lol. This is after i have explained the disease and how it works multiple times. I used to shower twice a day. Now its a struggle to shower daily. You arent alone in this!



  2. 3 minutes ago, bombsh3ll said:

    I don't know about your area but certainly in the UK there are lots of mobile hairdressers who cut/style both men and women. They often charge less than a salon too. 

    Just type your area and mobile hairdresser/barber into google & I bet you find loads. 

    Also if you have any local advertising sites (we have Gumtree) where people buy and sell stuff, there are often mobile hairdressers advertising on there. 

    B xxx


    I will look with those terms and see what i can find. 

  3. 1 hour ago, Pistol said:

    @Derek1987 I also believe that it would be beneficial to you to see an autonomic specialist at this time. If you apply for SSDI based on anxiety your psychiatrists eval may be enough but you will be assessed on that diagnosis. If you want them to consider the syncope/ dysautonomia as a reason for disability you should see a specialist ( I understand that you say the physician that is seeing you for your dysautonomia symptoms is a specialist but if the treatment is not working I personally would seek a second opinion ).  

    Yeah i see an autonomic specialist and im still the same. This is her bio if you are interested.


    I was offered to go to vanderbilt initially but in my ignorance i was like well if i have a specialist here in my city, ill just see her. But now im officially iust waiting to go to vanderbilt after my recent referral.

    If i get denied, thats when i know my attorney will really start to help me. Like i said, i did explain i have autonomic dysfunction and it causes this, this and this. 

    Social security might of zoned in on anxiety because they feel my autonomic dysfunction doesnt meet the criteria of disability. Who knows but thats where my attorney can help me.  Either way, ill win eventually unless i get better.

    I hope i can talk to my examiner and be like my anxiety isnt just mental, its physical. My test results prove it.  And describe what autonomic dysfunction is. If i can explain my condition, that will help me out. If not, idk.  We will see what happens.

  4. 32 minutes ago, Pistol said:

    @Derek1987 I agree. If you try to get SSDI on grounds of anxiety rather than POTS ( which apparently you do suffer from ) then the syncope will not matter b/c it really is not a symptom of anxiety. So I understand why they would want you to get a second opinion - to determine what the ANXIETY does to you. You no longer are asking for SSDI due o the syncope/ POTS. This is a whole different ball game! 

    I put what conditions i suffer with. POTS was at the top. Anxiety was in there. On the back of the questionaire i explained that my POTS is a cause of major anxiety. I explained how the disease works. I told them about the bloodflow to the brain problems, syncope, and all of the other issues its caused me including the anxiety. I included it all together but under the umbrella of autonomic dysfunction. 

    My wife was sent for a mental evaulation even though hers was physical pain from various conditions she has. They tried to say her physical pain was from depression. They didnt do an anxiety exam however.  

    Im going to be completely honest. And do my best. I just wanted any advice i could get because of how crooked the system is. 90 percent of doctors ive seen either dont care or doubt you.

    I did hire an attorney but she wont get anything if i win the first try so i know she isnt interested in helping me right now so i havent even contacted her. She told me to fill out the application and come in to put her as my attorney on paper when i turned it in. Then her assistant was talking about winning at the hearing. And i was like i need to be approved before that. So im doing everything i can on my own to be approved. 


  5. So I have a SSDI case pending. First application.  After they got all my doctor records, they are saying  that's not enough to approve my claim. 

    They are sending me out for a mental and anxiety evaluation. I have hyper pots and elevated adrenaline in my body. So it seems like they don't care about the fainting issues, heart palpitations and all of the other suffering that goes on with this disease. Looks like they are focusing on the anxiety side of things.

    My psychiatrist even has a letter in my doctor records mentioning the sympathetic  and parasympathetic nervous system dysfunction causing high anxiety, rapid heart rate, fainting etc and says I am permanently disabled.  

    Has anyone ever gone through this? How can I prove to them my anxiety is horrible.  I mean it really is. I had an autonomic nervous system test done showing my adrenaline is way above normal. A normal person is a 1. Mine was an 11. I wonder if I can take those records and explain to him what it means. I know a regular doctor won't understand the graph. Only my cardiologist and neurologist understood it.

    On the letter it states " the medical evaluator may not do some of the tests we ordered or that other tests are needed". 

    Wondering what kind of tests they can do to check my anxiety. I know I am disabled now. They need to know it. I know that the doctor is assuming I am not from the jump. I mean a lot of people  fake disability and it ruins it for others.  My wife for example.  The doctor said she was faking and trying to use the system.  It took her 3 years and a hearing  to be approved. I don't have that kind of time.  Long term disability will only pay me up to 24 months. I wouldn't be able to hold a job in my current condition. 

    All advice and wisdom will be appreciated.  Thank you!

  6. On 1/7/2004 at 3:45 AM, Timbo said:

    Sometimes when I roll over in bed at night my heart will speed up for 20-30 seconds and then calm down. It's not a symptom that really bothers me, but I am curious if any of you experience this.

    I get this like every freaking day. Good to know I'm not alone in that. 

  7. I've been stuck in bed since September 2018. Yesterday I had a horrible day and I didn't even do anything. Today I felt better but my body is still screwed up. I put some air in my tire for my wife's car. I have a mini pump I got from Amazon. It took me 10 mins. I even sat down in the air while the tire filled up. My heart rate jumped up 30-40 beats and my BP shot up. Lower number was 103. Laying down brings that number into the high 70s low 80s. 

    I feel like I'll never be the same. I'm going to Vanderbilt eventually. Maybe they can do something.

    We are trying to move soon(hopefully) and I feel so guilty I won't be able to do much at all. I'll hire movers. But packing will not be possible. I'll try and do some here and there.

    Still early on in my journey to a recovered state hopefully. 

  8. 6 hours ago, bombsh3ll said:

    They will certainly figure out if you have an adrenal problem. If your adrenals are fine but autonomic nervous system malfunctioning, unfortunately they will not be able to help but at least they can rule out adrenal problems. 

    Have you had a blood or urine test for catecholamines (noradrenaline, adrenaline)? This is pretty standard in anyone with POTS or similar symptoms these days to exclude adrenal tumours/overactivity. 

    B xxx

    I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. 


    So it sounds like me seeing this specialist for the adrenal glands is probably a waste of time most likely. I'll still go but these medical bills keep growing. 🤦‍♂️

  9. 3 hours ago, bombsh3ll said:

    The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help.

    B xxx

    I didn't know we could have adrenals from sympathetic neurons. I don't even know what that is. I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? 

    I have lack of faith in doctors. My autonomic dysfunction specialist tells me I have hyperadrenergic POTS but never told me to get a scan of my adrenal glands to make sure I didn't have any tumors on them. It was actually my psychiatrist who told me it could be a possibility. So I got tested. No tumors.

  10. 3 hours ago, toomanyproblems said:

    Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

    Would that even be safe to remove them? Wouldn't that make us more prone to fainting?

  11. I've felt very mildly dizzy the past couple of days but my BP was high enough not to faint. Normal range. I feel like I'm laying on my back in the ocean and my head is floating over really small waves. It's very mild. Not sure what the exact definition of dizzy is in POTS. I felt a little spinning action yesterday. Not near the spinning where I took a long hot bath just trying to relax and tried to get up and couldn't walk a couple months ago.

    I do have midodrine but I haven't taken it since my BP was normal. 

    Another odd detail. I haven't had any caffeine in a couple of months. I drank a 12 ounce coke. It dropped my top  BP number 20 plus points. I thought that was odd. My top number is usually consistently a little high. From 130-140 average. The coke dropped it very quickly. Don't know what to make of that.


  12. I have been having trouble getting over this bacterial infection for at least a couple weeks now. And I'm on antibiotics. Just when I think it's going away, I wake up in the morning and I can just tell my throat is getting those white patches back. I've never had this much trouble getting rid of it. I get this every 1-2 years. I get these White patches on my tonsils then I take antibiotics and I'm fine. I used to even work through it fever and all. Now all I do is rest. I figured I would be over this by now. 

    I've always wanted to get my tonsils removed because of this. I wonder how well I'd do with surgery. That's a whole different topic though.

  13. 1 hour ago, potsiebarbie said:

    I cried during my NCS/EMG this week. Lol I was not thrilled with the shockey thing. Not thrilled with the needles either. Actually the needles on the right side were bearable; I think because that is wear the neuro was sitting. Reaching over to do the left must have been a bad angle. Anyway, did you get your results? 

    Yes. And just as I expected nothing is wrong. The test did give me a quarter sized dark black bruise though. And I have to pay to get stabbed and shocked. Crazy concept.

    Basically he is referring me to Vanderbilt. Im seeing a specialist here where I live but I think Vanderbilt will have a lot more knowledge/tests. I didn't wanna go because it'll be a 3 plus hour drive. That's gonna be so hard on me. @Pistol been telling me to go for the longest. Hopefully it'll be during the cooler months. The summer is brutal on me. 

  14. 16 hours ago, Pistol said:

    Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: 

    I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date:  how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too! 

    The thing is my wife goes to all my doctor appointments. She hears the doctors and even acknowledges my limitations. But she's always complaining about how much she has to do. And that's because I'm out of commission. So I feel guilty and it adds stress to me. 


    As far as dates, the only thing we can do is watch movies at home. If I were to go out to a restaurant, I wouldn't be able to make it. The crowds, the noise, sitting up too long. If I somehow made it through, it would be torture and I'd be sick for a few days. 

    She thought i might of gone to the movies with her yesterday. I'm like really? I barely survive doctor appointments. I think she knows my conditions, she's just unhappy with it I feel like. 

    She has her own disabilities as well. I'm always like hey slow down. That's enough for today. Did u take ur pain medicine? She gets mad at me telling her to take her meds. I bought her a tens machine, supplements, hot patches. I tell her no don't worry about cooking today because she's hurting. 

    I don't think she realizes just how bad I am. I don't know. She understands more than anyone else in my family though. Nobody understands. The last time I went to the ER, I was explaining my story of being bed ridden since September. The nurse had a weird look on her face and said I just saw you walk. I tried to explain but I don't think she received it. It's hurts nobody really understands.

  15. For the past few hours my anxiety has been really bad. My hands have been a bit sweaty and also have gone cold. I have a weird feeling in my gut. I feel slightly dizzy at times. Or maybe it's the anxiety? My fingertips are tingling. 

    Theres times where I feel bad then there's times like this where I feel scared. I just feel like I'm malfunctioning. 


    My BP is good. My heart rate is high 50s low 60s. Yesterday it was consistently in the 80s. It always changes.

    I'm just trying to figure out if that's the right time to take midodrine. My BP is fine but my adrenaline is obviously high. I just went over my Xanax daily dosage by half a pill. I was trying not to take any and definitely not go over my daily dosage.

  16. My wife is supportive of my health but sometimes she doesn't understand. She asked me to hang a curtain. It probably took me a month to finally will myself to do it. She would get so angry about it. I tell her I'm sick but she says it's because I'm forgetting. Which that's probably true too but the main reason is my health. 


    It's hard for me to get motivated to shower and shave. She also is complaining about cuddling. I get it. But my illness makes me suffer to do it. The heat from her and just lying motionless is extremely hard. I can't just lay down and chill. She just doesn't believe how hard things are for me. I'm suffering everyday.

    And of course I haven't been on a date since before Sept 2018. 


    Anybody else have misunderstanding spouses?

  17. 19 minutes ago, bombsh3ll said:

    That's really strange - although there are other meds I could previously tolerate that I no longer can.

    I would have thought if it related to a genetic enzymatic defect, it would be that way from birth for affected individuals. 

    Perhaps it is an epigenetic phenomenon, whereby illness modulates gene expression. 

    B xxx

    You totally lost me on that last sentence.😲

  18. So I took benadryl for about 5-6 years straight every night to sleep. Ever since this disease has crippled me it seems I can no longer tolerate benadryl. I've taken it a few times and usually my body reacts weird. One night I woke up and got really hot and forehead sweats as if I was about to faint. Other times it seems like it makes my body produce a ton of adrenaline. I feel a weird feeling in my gut and I get jerked around by I guess the adrenaline hitting me. I don't know what it is. But I associate those weird punch in the gut feelings with fainting. That's how I was on my last day of work. Felt like a gut shot of something to my stomach and my legs collapsed and I was on the ground and my body was trying to faint. 

    Can anybody else relate? It sucks because benadryl is the only thing that gives me good sleep. 


  19. My last day of work when I collapsed but remained awake. When I was at the hospital I was laying down and I think it was 156. Not sure what it would of been standing up. I was panicked as well though. My body was trying to faint for over an hour even while laying down. When they gave me Ativan my body stopped trying to faint. They kept me overnight because they had no idea why my heart was beating so fast. Basically they did an ultrasound and I wore a heart monitor all night and told me they have no clue and to see my primary care doctor and let me go the next day. I was terrified to be let out of the hospital. 

    And that's where my journey began of finding out I had POTS.

    I saw a cardiologist and he didn't understand. He referred me to another heart doc who deals with electrical signals of the heart after I wore a heart monitor for a month with the cardiologist and saw my heart wasn't acting normal. The other heart doc immediately believed I had autonomic dysfunction and referred me to a autonomic dysfunction specialist. And there is where my POTS was confirmed.

  20. I take Xanax prescribed by my psychiatrist. Cold air keeps me calm as well. Playing video games.  Staying away from lights and sounds help me too. Sometimes my cat helps. Sometimes nothing works and I just lay in the dark with fans on. I started taking lower temp showers. 

    When I go out in public is when I really battle with it. Like to a doctor's appointment. My adrenaline runs so high for so long, when I get home I crash and fall asleep.

    It's really miserable.

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