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Posts posted by Derek1987

  1. 4 hours ago, KiminOrlando said:

    They can't fix you. That is what I was told. They can only treat the symptoms. They treat them one at a time by trial and error.

    Vandy was a great experience for me. I hope you get answers and help. Living like this is very frustrating. I too start sweating when it isn't hot. Wish it would stop.

    She told me the same thing. There is no cure but symptoms can be managed. Well so far after a year, they have not been managed. After a year they have only tried me on 2 medications. Just waiting on vandy or a healing. 

  2. 2 hours ago, POTSius said:

    In hyperadrenergic POTS, there is excessive sympathetic nervous system activity

    A beta blocker is only blocking the beta receptor mediated effects of excess sympathetic nervous system activity

    There are also alpha receptors which respond to adrenaline and noradrenaline and which could be mediating symptoms

    In addition, the sympathetic nervous system releases things called co-transmitters like NPY, and purines (like adenosine, ADP, ATP, this is called purinergic signalling) that can have additional effects

    So I think it makes perfect sense that a beta blocker would not block all the effects of excessive sympathetic nervous system activity

    I personally have found that even though I am on a beta blocker and it is controlling my heart rate I still have orthostatic intolerance (just not tachycardia while the beta blocker is working)

    Thanks for the response although i did not understand most of it lol. 

    I wonder how come you dont experience tachycardia with a beta blocker and i always experience it regardless. 


    All the beta blocker has done was made my laying down HR drop from 70s/lows 80s to low 60s/50s. i stand up and can still get a 110 plus reading. Before the beta blocker, laying down i would be around the 70s/80s like i said and could jump to 130s 40s 50s upon standing.


    All the medicine is doing is lowering the HR but its not fixing my broken nervous system at all. Im basically still in the same boat. Hopefully what i said makes sense. I feel bad today. 

    When she filled out some long term disability(not ssdi) paperwork for me, she wrote that i had fair health. I dont believe being stuck in a bed for a year is fair. I still got approved thanks to another doctor. An actual doctor. 


  3. I see an autonomic dysfunction specialist. She is a NP but specializes in autonomic dysfunction. 

    Yes they did figure out i have hyper pots. And i agree with them on that. My BP rises upon being upright along with my HR. I have elevated adrenaline in my body upon being upright.

    So when im sitting or standing, my body is being overloaded with adrenaline causing panic. Its an anxiety i cant explain. (Sitting in a lobby waiting for the doctor to call me is torture)

    They have me on carvedilol and mestinon. I understand their goal is to reduce my adrenaline and HR. Here is the problem. It is not working. 

    Yes my HR is reduced. But it still climbs 30,40,50 plus BPM upon standing. All its doing is making my HR lying down slower and when i get up its still a huge jump and still in the hundreds. This is just after 5 mins of standing. I dont know how high it would go after that as i dont make it much longer than that. 

    I dont understand the logic in what they are doing. Just because my HR is slower does not mean my nervous system is corrected. Lets say it completely eliminated my anxiety. If my nervous system is still broken, how is that going to make me function? If my body is still having trouble pumping blood to my brain, all that would do is cause more fainting/near fainting incidents. Right?

    I think they are in over their heads. My specialist thinks i can be functional at some point because " you are still so young". Even if it eliminated all of my anxiety and my HR numbers are more normal looking, its not fixing the issue. 

    A couple days ago it was in the 60s outside at night. I wanted to try and enjoy it. I sat in the chair on the porch. The air was cool to my skin yet i started to get hot and flushed very quickly. My body knows the air is cool yet im starting to burn up in the face. I didnt make it 3 minutes. I had to go lay down. 

    I am waiting on an appointment to go to vanderbilt in nashville. 

    I guess this was kind of a vent. 

  4. 17 minutes ago, DizzyPopcorn said:

    Refresh my memory if you don't mind, but they did rule you out for a pheo in your case right? 

    Yeah it was ruled out. I was supposed to see an adrenal gland specialist anyway. Missed 2 appointments because i was having a really hard days. It was so hard to reschedule with them. Finally got ahold of them this week and they dont accept my new insurance lol. So i told my primary care doctor to find me another who accepts my insurance. I dont know what they can even do. My cardiologist said the beta blocker is really the only thing that can be done about it. Idk. 

  5. 31 minutes ago, KaciCrochets said:

    @p8d I will have to remember that! I do okay right now with the hydroxyzine, but my fear is that it will stop working. It makes me feel better to know of other meds to try. I just need something to keep the surges at bay long enough for me to fall asleep. Once I fall asleep I'm good. Well, good enough.

    @Random-Symptom Man I will have to look into the headband earphones, I'm intrigued!

    Before i had xanax, they gave me hydroxyzine after a hospital trip. It did 0 for me. Even took extra and felt nothing. It was still a dose that could be taken. Still felt nothing. Glad it works for you. 


  6. 1 hour ago, p8d said:

    @KaciCrochetsmitrazapine is the only med that allows me to sleep through the night.  It works differently than antidepressants and sleep meds. This is off Wikipedia, not my favorite source but it describes the pharmacology well, especially why it works for us Mirtazapine has antihistamineα2-blocker, and antiserotonergic activity.[7][72] It is specifically a potent antagonist or inverse agonist of the α2A-α2B-, and α2C-adrenergic receptors, the serotonin 5-HT2A5-HT2C, and the histamine H1 receptor.[7][72]


    Is this similar to benadryl? Seems like i cant tolerate benadryl anymore. My body goes haywire when i take benadryl now. Wake up to hot flashes, and adrenaline i guess. Benadryl helps me sleep well if i dont take it every day. Wish i could take it sometimes. Benadryl is actually more potent than my xanax unless i take benadryl everyday like i used to. 

  7. On 9/13/2019 at 6:13 AM, DizzyPopcorn said:

    Undiagnosed but i can relate as well. For me, at least right now, passing a car and accelerating generate too much adrenaline and i feel short of breath for a few secs. I cannot play video games anymore unless they're tame and nothing exciting happens. Definitely sucks. 


    I hope all of this goes away once im better abd medicated 

    Before i completely broke down, i remember playing sports games on my xbox. Every time i had a super close game, i felt really bad and had to quit. I was angry because i was just like i want to enjoy myself. I forced myself to sleep to escape the suffering. At the time i thought it had something to do with my blood pressure. But in the back of my head, i remembered i had fainted once already at that particular time and i didnt accept that as normal. Im glad im through with those stages of whats wrong with me? Is there something wrong with me? 

    I remember this feeling hitting me again when i was putting a computer desk together. I had to stop and tell the wife i need the room alone to escape.

    Then recently i watched 2 action movies back to back. That really screwed me up. I was getting these jump scare feelings and what felt like some shock or punch to the gut. This time i had xanax. Took my max dose and requested to be left alone to sleep it off.

    Trash disease.


  8. 5 hours ago, Pistol said:

    @Derek1987 don’t worry, this is common. It happened to me too - despite my employer telling me that I was not safe to work. I have a friend who is a disabled veteran with a metal rod in his spine, ptsd and he has a service dog, yet SSDI turned him down. Despite him being fully disabled per the VA. So - just keep on trucking,,,,

    Did he finally get it? My wife told me a story of someone she knew who had a serious illness. By the time they got approved and got the approval letter, the person was dead. 


    Like i said in my previous post, im calling my lawyer tomorrow. Got the denial letter in the mail today. 

  9. 3 hours ago, KiminOrlando said:

    Yes, you have to lose the appeal too before going to a hearing. Sorry this happened. Glad you got an attorney. I had to win in court and it took 4 1/2 years. I also have multiple autoimmune diseases. 

    Insane. This probably makes people homeless. The ones who are truly sick. Im glad you finally got what was already yours and you were able to maintain yourself.

  10. I dont have the letter yet but i checked the status on ssa.gov. a decision was made yesterday. I already have a lawyer and im going to call him tomorrow when my wife is here because my memory is crap.  Dont you have to be denied twice before it reaches the hearing level?


    Anyways just giving an update. What an annoyance. They had all the evidence they needed. What a corrupt world. Appeal time.

  11. 3 hours ago, KaciCrochets said:

    An alpha blocker is specifically for norepinephrine. Beta blockers are for adrenaline and a little bit for norepinephrine. I'm glad you got checked for pheo, although if you did have one it would have solved all your problems with a little surgery. Wouldn't an easy fix be nice? 



    Yes it would have.

  12. 7 hours ago, DizzyPopcorn said:

    Next time i complain about my sorry *** (i do that often these days), I'll remember you and how much you're actually going through. 


    Are you on disability? 


    Edit : Just saw that you're in the process of getting accepted for ssdi. How is that going? 


    Feel free to complain as much as you want lol. It helps to vent i think. 


    Im receiving long term disability through my previous employers benefits. I filed my first application for SSDI in april i think. Even after all the evidence, including written letters from doctors saying there is no cure, i am permanently disabled, social security still sent me out for a mental/anxiety evaluation. I was extremely nervous because i know there is a lot of people who fake being sick and i felt like i was going to have to sell myself. But the evaluation went really well. He said social security is crazy and i obviously should be approved. He even snuck me a lawyers contact info. I already have one though. I didnt tell him that. Im going for approval on my first try though. I waited several months before i applied so i could have enough evidence to have a strong case. Although the first few months of being critically ill, i was trying to figure out what was wrong so i could be fixed and go back to work. Nothing has changed for me healthwise and my employer had no choice but to let me go.

  13. 9 hours ago, KaciCrochets said:

    Wow. What about alpha blockers? Beta blockers didn't work for me, either, they made me super relaxed but my brain was still jittery. I didn't sleep at all on them. I assume you've had pheochromocytoma ruled out?

    I dont even know what an alpha blocker is. What do they do? I have to take xanax in order to sleep. I had been taking benadryl for years in order to sleep. And that P word you mentioned, i had to google it. I dont have any tumors on my adrenal glands. Got that ruled out.

  14. 24 minutes ago, DizzyPopcorn said:

    Thats just frickin crazy. How the h*** do you cope? Do beta blockers do nothing for you? 

    Not that ive noticed. They just added mestinon to the mix. Ive been on mestinon by itself and did nothing for the adrenaline. So now they are trying the combination of mestinon and coreg. They said the beta blocker isnt doing enough and are adding the mestinon to help my body " put on the brakes".


    I dont live a normal life anymore. The best place for me to be is in bed and the lights out and in the cold. I had some visitors come over the other day for maybe an hour and a half. I sat up maybe 20 mins and layed on the couch the rest of the time. I was battling fight or flight during the visit but tried to be normal. All the noise of conversation, and trying to focus on conversation myself, it really took a toll. After they left, a tidal wave of fatigue hit me and i couldnt stay awake. Slept for about 3 hours and woke up feeling like crap. Lol.

  15. On 9/8/2019 at 9:41 AM, KaciCrochets said:

    Hi, I'm new here but not new to POTS. I'm hyperadrenergic but for the past few years my symptoms have been tolerable. However, the past three weeks have suddenly been brutal, for no reason I can ascertain. I've had norepinephrine surges all night for weeks, and after the first week I developed searing stomach pain to go with them. I've done the typical GERD protocol, and my new PCP put me on a low dose of hydroxyzine and that helps the burning go away, but does not stop the rushes. It keeps the rushes from becoming panic, but it's still tough to sleep. I had been doing well after starting the med a week ago, but yesterday I went from feeling fine to suddenly having stomach pain and nausea, and fighting panic. It was up and down the rest of the day, and nighttime was awful. I am having slow gut motility with it. It's hard not to let the anxiety spiral because five years ago I had a large kidney stone and that's when I became stuck in fight or flight. The ER gave me lorazepam, which I took for five weeks while I went through two surgeries, and then tapered off for three months, but I was stuck in hyperadrenergic h*** for two years before I healed enough to be able to sleep longer than four hours. So being back in this state for no apparent reason is terrifying. I'm 46 so I am wondering if hormones are becoming a factor. My doctor has referred me to neurology (I switched insurance so I can't see my dysautonomia specialist anymore), but given past experiences I am not very hopeful I will get help.  I guess I am just looking for reassurance that I am not alone in my struggles. Thanks for reading.

    I suffer through some sort of panic every single day. Sometimes its so bad i have to take my max dose of xanax and ask to be left alone in our bedroom and sleep it off. I just made my wife some soup from a can. When i got it out of the microwave, my hands were shaking so bad, i spilled 20 percent of it on the oven. Face palm. I deal with fight or flight daily so i understand. Its torture.

  16. 1 hour ago, whoami said:

    Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack.

    I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.


    My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?

  17. 2 hours ago, whoami said:

    Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed.



    Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait.


    Sorry, had to vent.


    How are you guys doing?

    Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.

  18. So since being stuck in bed officially a year now, i have finally gotten motivated to eat healthier by restricting my calorie and sugar and carbs intake. Nothing extreme but i know i need to change my eating habits because ive gained 35-40 pounds! 

    So im cutting back and watching numbers. With that being said, i dont want to miss out on any nutrients. Do you guys have any multivitamin suggestions? Looking for the gummy kind please. Thanks for any suggestions.

  19. 1 hour ago, Goodr189 said:

    Interesting that you describe "stomach shocks". I recently been having similar feelings and they don't have any effect on my heart rate either. They sometimes give me anxiety or cause shortness of breath until I can sit down. Could you describe them more?

    What other meds do you take?

    Sometimes i just have a weird feeling in my gut. Other times its like a jump scare feeling from watching a scary movie but 2 or 3 times worse and is set off by nothing(actually its set off by too much stimulation) and the feeling goes from my heart to my stomach. Its taken me to the floor before. Its like getting punched in the stomach or something. I cant put it into words but yes it causes extreme anxiety and usually my heart rate will go up. This time my heart rate is the slowest ive ever seen it. 


    I take coreg 6.25mg, xanax, midodrine, and they also want me on mestinon but they didnt call it in on my last appointment. Ive been on it before and it did indeed slow my heart rate but i wasnt on coreg. Coreg has definitely helped slow my heart rate down. I dont really want to add mestinon into the mix especially since my heart rate is already decent when laying down. I cant stand for long or those adrenaline attacks get me or chronic fatigue where i cant hold my eyes open.

    I know their goal is to get me on my feet and operating like a normal person but its not working out so far. Eventually im going to vanderbilt. No appointment date yet. Waiting on that.

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