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Posts posted by Derek1987

  1. 5 minutes ago, Pistol said:

    @JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

    @Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

    Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.

  2. 15 minutes ago, JimL said:

    Nitroglycerine. It dialates arteries and if you have some sort of orthostatic intolerance, it may induce passing out. It did with me. 

    Glad they didn't do that to me or I'm sure I would of passed out. How did they get you to come to?

  3. 6 hours ago, bombsh3ll said:

    That's exactly how I was when I had mine in Feb. I really thought my blood levels would show a hyperadrenergic picture, but they were actually normal in both positions! I was frustrated as I was looking for something to treat. Too low catecholamines, there is midodrine and droxidopa, too high and there is clonidine, alpha & beta blockers etc, but nothing in between!

    I hope you gain some info that leads to a helpful treatment, please keep us posted with your results.

    B xxx

    Me too because I'm still hurting from that TTT. I have a small fever. Sweaty hands. Double bags under my eyes. Nausea. Feel so sick. And I have a neurologist appointment tomorrow. I am so done right now. Hope you get answers and feel better as well.

  4. 4 hours ago, Pistol said:

    Hi @Derek1987 - welcome to the club!!!! That stinks that they think you are hyperPOTS. But at least you will know then. I have it too and can give you many tips - but mostly it will be meds that take the edge off. Regarding the TTT - isn't it the most sadistic medical procedure ever invented? Did you pass out? --- I hope you will feel better soon. I will PM you about some meds that have helped me. Rest up!!!!!

    The test has me feeling like crap still. But during the test, it was torture. Especially when they leaned me up. I didn't pass out but there were moments where I thought it was coming. I got so hot and sick. My hands were shaking hard and sweating and I was flushed. Later on in the visit, I got nauseated after drinking water. And I was ill for the rest of day and night.


    Please PM me whatever tips and info you have. Like I said, I should have this diagnosis next week. You thought this all along. They were treating me for Rocky mountain fever at first. They thought that's what messed me up. I just hope my blood work comes back correct so I can be diagnosed officially. I want the right diagnosis of course but the sooner the better.

  5. 1 hour ago, joshrandall said:

    I have  was diagnosed IST, from pssible relating to dysautonomia, i went vegan for a while and tbh really got alot better, eating very good food. Then lately ive put alot of weight on, started to drink alot be unhealthy, takeouts, and I just struggle with the debiliation of this condiiton and the, chronicness, im 28, also this is so hard that lack of validation, nobody thinks there is anything wrong with me its really upsetting.

    Also I dont know If I have something relating to adrenaline, but when i get adrenaline angry I pretty much feel like im gonna die and pass out.

    can someone chime in.


    Just struggling mentally.

    Hey bro. Not sure what IST is but I'm 31 and my life is drastically different. I'm bed ridden at the moment. Have been since September. Gained weight. Depressed. Scared. PM me If you wanna chat. You aren't alone. Things will get better. It just takes awhile to get this stuff figured out. Hang in there. Like I said, hit me up if you want to chat. I would add more to this post but I'm so tired from my doctor appointment. 

  6. It was torture. When they leaned me up, my body did not like it. Got really hot and flushed and ill. They took blood while I was doing the TTT. They gave me some ice packs. They think I have hyperadrenergic POTS. They think this blood work will prove it. Something weird though. I've taken two 24 hour urine tests and she said they both appear to be tampered with and diluted with water. Which I didn't do of course. They don't think I tampered with it but they gave me a drug test to rule things out. I'm Soooooo tired.

  7. 26 minutes ago, KiminOrlando said:

    Is your doctor calling this a Panic attack or was it just an arbitrary term you used? I see the Xanax referenced. What caused them to prescribe that? 

    I get spinning too. I don't have panic attacks. Mine is dysautonomia and craniocervical instability which puts pressure on my brainstem. There are days I have trouble walking. I basically bounce from wall to wall, stumbling, like I am in a carnival funhouse.  Nothing makes it stop. I just wait it out.

    The condition is causing panic attacks. My body is in fight or flight a zillion times a day. And when something like this happens to me, the panic goes into overdrive. But yes panic attacks is officially written in my psychiatrist Dr records. I've had anxiety my whole life. When the faint spells started happening, my anxiety amplified. From the fear of fainting and I guess the high amounts of adrenaline. I did an autonomic nervous system test that apparently shows my adrenaline is way above normal. A normal person was rated a 1. Mine was at an 11. I'm sure it goes higher than that when I'm really feeling fight or flight. 

  8. 9 hours ago, gertie said:

    How did you get the spinning to stop?  I have POTS & Meniere's disease.  What you experienced sounds like Meniere's to me. I sometimes think it is more frightening than Dysautonomia.   Did you get nauseous with your vertigo?   Maybe I'm not allowed to say this, but either Ativan or Valium  sometimes helps with vertigo.   

    It stopped on it's own but I still didn't have proper balance.  The spinning seemed worse when I closed my eyes. I get nausea for no reason all the time. Not necessarily set off by anything but sometimes is.  I took 2mg of Xanax which is what my doc said I could take during severe panic. It barely phased me. Too much adrenaline I guess. My hands were sweating and shaking. Could have been caused by the panic. My hands always shake to some degree though.


    @Pistol or anyone who can answer. Is dizziness and loss of balance a sign of fainting to possibly come or is it it's own symptom of this disease altogether?

  9. 4 hours ago, Pistol said:

    @Derek1987 - I live 1 hour away from the nearest hospital and used to have to frequent the ER often. I always had my husband drive me but once or twice I called my PCP and he at that time advised me to call the ambulance ( which I did not ). I personally think that if your symptoms are such that there is concern for a true emergency I would definitely call 911. Also if you are not able to handle a drive to the ER or if you feel you need immediate help. What @MomtoGiuliana said is also a benefit from calling 911 - they can check you at home and you may find that you do not need to go. But ALWAYS: if in doubt - call 911!!!

    The medicine you took to bring up your BP - was it Midodrine? That will cause scalp tingling - it is a "normal" and harmless side effect. 

    Yes that is the medicine. I asked the nurse practitioner about it and asked if it was a side effect. She said no. This is why I don't fully trust people in the medical field. I brought my test results to show a cardiologist and I got a nurse practitioner. At least she knew about the disease a bit. She was saying I just have to find out what my triggers are. She gave an example of spicy food. Someone she knows has our condition and ate spicy food and set them off. This too happened to me months ago when I ate some peppers. But I was so dizzy and uncoordinated yesterday, I looked like a drunk person I'm sure. 


    The discouraging part about this is, I usually bathe this way. Lay down in the tub with 2 or 3 inches of water. I can't handle anymore warm water or I feel Ill. I lay there and relax. Then I get up and shower. I guess I can't do that anymore. The discouraging part about that is my condition must be getting worse. I guess....or maybe it was just a bad day. Thanks for the replies guys.

  10. So I was laying in the bathtub for about 20 or so mins. I felt decent other than a headache. I get up to wash and I couldn't. My balance and coordination was way off. I crawled to my night stand in panic and took a medicine that starts with a M. Supposed to help with that and bring blood pressure up. I felt like the room was spinning. I've had these feelings before but not this severe. 


    I didn't want to go to the hospital but the spinning feeling wouldn't go away. I put on a shirt and pajamas. My wife arrived home and I told her what's going on. She was urging me to go. The spinning wouldn't stop. I thought I was going to pass out. It is by far the scariest symptom of this disease to me. I eventually gave in and I got taken to the hospital.

    My blood pressure was high but everything else checked out which I knew would be the case. Especially since I took that one particular medicine. The NP actually knew about the disease. The spinning went away but my balance was off. I had to lean against the wall to give a urine sample. There was really nothing they could do for me. So I guess a question is, when is it time to call an ambulance?

    The new symptom I felt was when I was at the hospital. The whole duration I was there, my scalp was tingling as if the skin had fallen asleep. It even went down the left side of my face for a few minutes then went away and remained tingling on my scalp. I got home and was determined to shower. I almost fell but I made it.

    Now I'm in bed fatigued and discouraged. 

  11. 6 minutes ago, Shepard1 said:

    What is your actual temperature when feel off colour.   GP practice waiting rooms can be a nightmare if you are prone in picking up bugs easily.  Many years I dreaded my son getting sick after hours because when I took him to the after hour doctors I would end up very ill the next day with not my son's bug but something I picked up the the waiting room.

    In my late teen's I got a severe bout of glandular fever (40.3 C/104.5F)  and early twenties I used to have high spikes in temps with sometimes feeling off 39C/102F but not always.  It was felt that the wide range of temperatures where due to a brain stem reset as my breathing was also affected.   In my 30's these temperature spikes ceased.  Not long after getting diagnosed with dysautonomia I by accident discovered that these non-infection related temps had restarted again 39C/102F

    If achy maybe you picked up some bug some were.  Hope you feel better soon.

    I'm feeling better at the moment. Thank you. I know I'm not getting sick. At first I thought man I'm coming down with something. Then it goes away. It's very low grade fever. I don't know the actual temp but I have always been hyper aware of when I have a fever. And it always comes with aches. So it's happened a few times in the past few months. I think my body just can't do much activity at all and sometimes gives me a fever for some weird reason. 

    I'm still recovering from Mondays doctor appointment. I'm feeling a lot better but those first 2 days after were brutal. Not just with the fever and aches which actually wasn't that bad but a sickness I can't describe. A sickness I've never felt until my body completely broke down this past September. 

    I was just sitting here talking to my wife how I miss my teen years. I was always working out and playing basketball. Full of energy and strength. Sigh.

  12. 1 minute ago, p8d said:

    I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!).  I get the bad fatigue, malaise, aches, pain feel horrible.  I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis.  I still get this way if I overdo anything.  My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that.  Keep asking for tests for autoimmune disease.  

    I will bring up the autoimmune stuff to my specialist. What autoimmune disease were you diagnosed with if you don't mind me asking? 

    Meds I currently take.

    Carvedilol, alpha lipoic acid, Lisinopril hctz, midodrine, Xanax. I think that's it.


  13. 2 hours ago, Pistol said:

    Hi @Derek1987 - I used to get low temps of about 99.4 or so when my POTS was bad. Also feel like fevered when bad, with aches and hot eyes etc. My PCP never was able to figure this out, I am not sure if this is typical for POTS. I do know that low grade temps can be a sign of auto-immune conditions ( which can be a cause of POTS ) or of chronic inflammation or infection. In my case my urologist feels it COULD be because I have ICS, a chronic inflammatory condition of the bladder, which is caused by POTS in my case. 

    I felt feverish and achy and body pain. Then my wife just woke me up because the car tire was flat. So I inflated it. Now I'm sleep deprived and nauseated lol. But yeah I get random fevers. Low fevers, nothing bad but I can tell I have a fever, aches. I can't remember if being out of the house for awhile is triggering this or it's random. I've felt horrible since my doctor appointment.  Not just in the fever department. Feel like I'm recovering in the hospital somewhere. 

  14. I was out for 2 hours Monday because I had a doctor's appointment. And I am feeling tortured in recovering. It comes in waves. I have a small fever. I notice I get small fevers here and there. Sort of feels like the flu is coming on but never does. It's hard to sleep feeling so ill. Any idea on what this means? or am I just screwed up and nobody knows and it's part of the game? lol.

  15. I struggle with heat intolerance so bad i ride in 30 degree weather with no heat on. I want to turn it on but when I do, I get Ill and adrenaline overload. Feel like throwing up. 


    I have central heating and air, I also have a window unit. I run the window unit year around. When the heat comes on, the heat makes me so sick. The air conditioner makes it manageable. I'm pretty new to all of this so I don't know what helps heat intolerance if anything. Not looking forward to Summer.

  16. 15 hours ago, toomanyproblems said:

    I don't know what the role of lactic acid is in your question but the long held theory that the reason your muscles felt sore after too much exercise was because of lactic acid build up has been proven wrong. Apparently they now think that is due to micro tears in the muscle. This actually stimulates building of more muscle not scar tissue. 

    I think some people have a misunderstanding of what I'm saying. I could be wrong but I thought the burn you feel when exercising is lactic acid. I'm not talking about muscles being sore. I'm talking about the burn you feel when you are working a muscle out. My legs/arms were burning for 2-3 days straight as If I were right in the middle of a exercise. Not sore. And it was brought on by a minor task or what use to be a minor task to me. I was just fixing a couple pieces on a bed frame. I felt sick throughout because I was doing it. Then the burning came on and lasted a long time. This happens whenever I do anything almost. Sometimes it comes in waves of intensity. As if you are in the middle of doing situps and can't do anymore because the burn is so strong and my legs feel like giving out. 

  17. 13 hours ago, Pistol said:

    @Derek1987 - I get what you are saying and I am not at all offended, but I thank you for apologizing to anyone who feels differently. My husband is a totally logic person ( engineer ) and I am a completely emotional person ( nurse ). We truly look very differently at most things but that is actually a good thing. He is good at what I struggle with nd vice-versa. And yes - often he does not listen to me but here is one cause of this: most men can focus on one thing at a time, so if he is doing something and I tell him about something it would take him great effort to shift gears. I could see that POTS would make this worse!!!  I used to be the multi-tasker of the family, handling everything from job, household, shopping etc. Since POTS this has all changed - I am no longer working, barely keep up with the housework and cannot shop or transport my daughter or attend school functions. He does all of that. In your case your wife is also disabled and you must feel strongly about having these limits yourself. My husband is the backbone of our family now and I am so thankful that he is logical and what many call "a typical male" - so I can contribute in ways that are easier for me ( I am the mother/ nurse/ scheduler/ chef/ domestic specialist and general overseer ). He pretty much does everything else. Yes - if he had my brain fog it would be really, really bad!!!!!

    Thanks for supporting my thoughts. Totally didn't mean to offend anyone. Trust me I know I'm screwed up in the head. I can't talk about anyone lol.

  18. 26 minutes ago, gatherer said:

    That's offensive to women and it's not funny. There are no conclusive differences between male and female brains. Every single human being on the planet makes decisions and behaves based on their emotions and I know this because I've read the literature. I've also found anecdotally that people who claim to be logical are so unaware of their own emotions that they act on them without realizing it, making them even more highly volatile to be around. I don't want to berate you and I hope you don't take this personally, but I am a female and I visit these forums for support with my diagnosis and I do not want to see this kind of attitude towards women. It's hurtful and untrue and is primarily the reason why it took me 25 years to be diagnosed. 

    It is not to be taken offensively. We both have brains but different hormones. And that's why women are better at things than men and the other way around. There is a difference between men and women. Men, we struggle with pride. So yes, that could be why it took so long. And that's the same reason I didn't get taken seriously for a long time. And sometimes people are working in the wrong field. Men and women aren't the same gender. There's differences and that's okay. It wasn't mean to be offensive so I apologize for offending you.

  19. I'm 31. Not sure when it officially started. But I'm suspecting the major symptoms started hitting me early 20s or maybe even 19. At least fatigue and heart palpitations. Then 2017 was the first time I fainted. 2018 is when I've become basically useless and still basically can't do much and suffer daily.  We are suspecting mine is genetic and passed down. My dad has mild symptoms of what I go through. He can still function normally. 


  20. No expert on this period talk but can't you take birth control pills to help reduce the symptoms?

    Anyways don't feel bad. I'm 31 and get scared that I'm getting dementia. I forget stuff everyday. I say ok after I wash my hands I'm gonna go get some more toilet paper to stock up in the bathroom. Then I forget. I do that type of stuff all the time or basically everyday. My memory is awful. I forget things that are told to me. I forget stuff that happened. I even downloaded a phone recorder app to help me remember important stuff. I re ask questions over and over to people.


    I'm telling you my wife has been mad at me our whole marriage because she thought I wasn't listening to her. Now we know why I can't remember a lot of stuff. She's backed off about 95 percent lol. The other 5 percent is she's still a woman and sometimes still uses emotion over logic. No offense ladies lol.

  21. 7 hours ago, Pistol said:

    @Derek1987 - I am not sure if this is what you are referring to but I often get burny, heavy, almost "tired" legs when I am too active. That is usually my clue to stop. 

    It's the same burn u feel when u do any exercise long enough and u start to "feel the burn".  At times it's made me feel like woah I gotta sit down asap before I collapse (non fainting). It's been 48 hours and my legs are still burning as if I'm working out. 

  22. 9 hours ago, Tenacity said:

    Physiological stress increases the rate of lactic acid produced by cells. It's likely that people with POTS have chronically elevated lactate. People with POTS often have reduced oxygen uptake by muscles, leading to exercise intolerance. The lack of oxygen causes the muscles to produce lactate from glucose - you've probably experienced this from exercise, especially high repetition weight training. I noticed that when I became sick with POTS that I would more easily get the 'burning' feeling from even mild exercise, such as a fast pace up a flight of stairs.

    I mentioned this to my specialist back in February. She didn't even really comment on it. But it's happening any time I do much of anything. I still feel it in my legs. Not as extreme but it's there. And I don't mean my legs are sore I mean they are burning as if your stomach would while doing 50 situps. My job required me to walk all day. No sitting. 8-12 hours. So I was definitely in walking shape but ever since the collapse at work back in September, I've been experiencing all these weird extra symptoms and my body just broke down since then. Just trying to find answers to put me on the path to a better quality of life.

    Thanks for the information. 

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