Jump to content

Derek1987

Members
  • Content Count

    347
  • Joined

  • Last visited

Posts posted by Derek1987

  1. Anybody had these tests done? To prepare for the VNG test, i had to clean out my right ear with debrox drops. I was at home and flushing my ear out. After about the 10th flush with hot water, i got really hot. I lost all of my balance. I was on the ground and couldn't get up and everything was spinning. My wife brought me my BP machine. it was around 170s/100. I layed there for 20 minutes or so and got up and i was fine.

    a few days later i went to take the VNG test. It was fine until they blew cold/hot air into my ears. The cold air i had no problems with. Then they blew hot air into my right ear. i expected to get dizzy but had no issues. When they blew hot air into my left ear is when i got pretty dizzy. She said water is usually seen as more harsh which i would agree with. it didn't take me long to recover. They said i had bilateral weakness in both ears. So my ENT doc wanted me to take the rotary chair test and the VEMP test to see if the issues of my ears was a physical or neurological problem. We both figured neurological because of the POTS.

    I took the rotary chair test first. They spun me around pretty slowly in a dark chamber with goggles on asking me random questions. when the chair stopped, i was dizzy instantly. then they said okay we are going to increase the speed. i wasnt feeling well already. i was strapped in with a seatbelt. the chair was spinning around so fast, the only thing that kept me in the chair was the seatbelt. i was hurting so bad i guess i was closing my eyes and they said keep your eyes open. the chair stopped and i couldn't take it anymore. i had to get out. this was the most suffering i've ever experienced in my life. my hands were tingling like crazy. i bet my BP was through the roof. i layed down for 20 minutes. i knew i wasnt going to get any better that day so i pushed through the VEMP test. conclusion? they said nothing was wrong which contradicts my VNG test results(at another hospital). i imagine how i felt that day is how some people feel when they are dying. it's not like an ouch i broke my toe pain. it's an internal suffering i can't explain. i would of rather broken my toe. i was sick until the next day. 

    anybody else do these tests and have similar results? i see my ENT doc tomorrow to go over everything. i am also wanting to get my tonsils removed. she said because of my condition i might have to be in the hospital for 7 or 8 days because of dysautonomia. i am scared to get the surgery done now. but since i've had full blown pots, my heart pounds out of my chest when my tonsils get infected. which happens at least once a year. 

     

  2. 19 minutes ago, Delta said:

    The "D" in front of the "NP" means she has her doctorate in nursing, and the "C" after "FNP" means she is a *certified* family nurse practitioner. The "C" is the same credential as in "CNP" - certified. I've never been through this process but, honestly, I can't imagine that either an NP or an CNP would not be considered a qualified medical professional, as they are  permitted to not only diagnose conditions, but also to write prescriptions, including for controlled substances. I also can't imagine that you would be the first person to have asked your practitioner to fill out such a form, and I'd guess she would have told you if only an MD/DO could fill it out. Unless she was very, very new to practicing and simply had not had the experience.

    I asked my PCP to fill out paperwork for me months ago and they said they dont do that yet they did it for my wife. They didnt believe i was sick as i said i was basically. I ended up leaving because the the whole clinic was not good. Never callling in prescriptions, rude staff etc and it was far away plus they didnt support me. I didnt bother asking my new PCP to fill it out because he has no clue what i go through really. The cardiologist who referred me to my dysautonomia specialist half way understood my condition. He filled out only half of the RFC form.

     

    So i asked my dysautonomia specialist to fill it out months ago and she said no because my records should be good enough. I asked her one more time a couple of weeks ago and she actually said yes. And here is where i am. I have a strong RFC form from my psychiatrist though. I saw him first before being diagnosed with pots and seeing the autonomic dr. After my 3rd fainting spell, my anxiety crippled me. This is when my body completely broke down on me. He prescribed me xanax. It helps. I hate im on it though. 

  3. 2 minutes ago, dysautonomiaandmore said:

    @Derek1987 I have this everyday too. I did a Google search of this leading me to this thread.  Would you mind  sending me an email if I can share my email with you?  I never met anyone else that this happened  to. I notice the rest of the thread is from 2004 and many of  the users are no longer active.

    Private message me and we can talk further. Ever since ive been on the beta blocker called coreg, i no longer experience this 99 percent of the time. This problem has now been solved for me. 

  4. 7 hours ago, Pistol said:

    @Derek1987 I think this form is filled out well and honestly reflects your disability. It actually is very close to what my PCP put down on the same form, and I was approved upon the hearing. 

    As always - my advice is to be simply honest. You CAN'T do anything, either because it makes you sick or because it might make you sick, so there's no embellishing that fact. If the judge uses common sense and has any experience in his field it should be a no-brainer. And you might find the hearing a lot more straight-forward than you expect. My judge initially was a little accusatory in tone but as soon as he realized that I am answering his questions honestly and had ample examples of how work was impossible for me he changed his tune and became actually curious and compassionate. Remember - it is his JOB to be intimidating and to find out if you really are disabled - therefore he will push that fact. But you have nothing to hide and don't need to seek for trick questions - tell it simply how it is. 

    My daily routine is wake up and use the restroom/brush teeth. Fix something to quick to eat in the microwave. Take medication. Eat in bed. Stay in bed. I take the trash out once a day. I dont watch much tv. Im usually just browsing on the phone. I get up for bathroom needs. 

    I take the litter out once a week which is like taking a trash bag out. But its heavier and leaves me breathing as if a normal person just did 75 jumping jacks. I hate doing that task. But on a typical day i really do nothing. Sometimes i might play video games for about 45 mins. But thats not every single day. 

    If i add something extra in like going to the doctors, i crash with fatigue when i get home. One time i zip tied a power strip to the side of the kids bunk bed. 10 minute task. I was holding my arms up laying down doing this. It shouldnt have taken that long but once i was done i couldnt hold my eyes open. Idk i dont want to sound unbelievable even though its true. My typical days are doing nothing lol. So im hoping this RFC forms gives me credibility because i am only 33.

    My lawyer told me dont say you cant do anything. I mean i can try to do things but i always pay for it. I mean i havent even been able to go to the movies. As soon as i sit or stand, the adrenaline kicks in and it hurts. I just deal with it until i can lay down again. 

  5. 24 minutes ago, Delta said:

    @Derek1987

    Is she an NP or a CNP? It may make a difference. I found this on line . . . 

    NP (Nurse Practitioner)
    An NP is an RN who has completed either a master’s or doctoral degree program, plus clinical training. NPs provide a full range of primary, acute, and specialty care services with an emphasis on the health and wellbeing of the whole person. NPs can practice autonomously in many states, but some still require the oversight of a physician.

    CNP (Certified Nurse Practitioner)
    A CNP is an RN who has additional education and training in a specialty area, such as family practice or pediatrics. CNPs have a master's degree in nursing and board certification in their specialty. For example, a pediatric CNP has advanced education, skills, and training in caring for infants, children, and teens. *CNPs are authorized to diagnose illnesses, treat conditions, and provide evidence-based health education to their patients.*
     

     

     

    Next to her signature she wrote "DNP, FNP-C"

  6. Shes only a NP but shes a specialist in dysautonomia. Apparently lots of schooling involved. She practices at a neurology clinic. 

    What do you guys think? Im just nervous for the phone hearing. Trying to prep myself. I keep reading to keep your answers short but i want to say enough to where the judge understands my struggles. 

    Like if he asks me a typical day, its going to be really boring. I havent been able to do much in over 2 years now. I dont want it to seem like i am faking or something. I am hoping this form holds weight. I know i made another thread 2 or 3 weeks ago. Sorry. Getting into final prep and all advice is appreciated. 

     

    Screenshot_20201129-001107_Facebook.jpg

    20201129_002547.jpg

    20201129_002529.jpg

    20201129_002134.jpg

  7. 3 hours ago, Pistol said:

    @Derek1987 - since I have a history of seizure with flushing the ear my doc wants me to come to his office to have this done. I would have the ENT doc do it - they can actually remove the wax with a tool instead of flushing it out, I had that done and it did not cause an episode. 

    Well she said my ear was 100 percent clogged and dug a lot out but she said theres still 50 percent left and that i needed to use drops to get the rest. Not sure if she was being lazy or what. It hurt though with how deep she was going in with the tool. Im going to call her in a bit. 

  8. 31 minutes ago, Pistol said:

    @Derek1987 - the same thing happened to me, I too have HPOTS. I had a perforated eardrum and blood built up in the ear canal. Once the drum healed they flushed out my ear ( after using drops first ). While flushing I had a seizure (same mechanism as syncope), BP was high. I was told that differences in pressure in the ear or even the swooshing sound and the cold of the water hitting the drum can cause a sudden drop in BP - which in HPOTS will trigger the Sympathetic NS and the BP skyrockets. Best to avoid doing that 🙃!

    My water was hot. Im assuming the same thing would of happened either hot or cold. Gonna try again tonight sigh. I have to get the wax out. Now im really nervous about getting my tonsils out. Any little thing can cause problems. 

  9. Dudes...in other words girls. I went to an ENT doc about vertigo issues. To see if i have it. I have to take some test. The problem is my right ear is clogged so they put me on ear drops first. The 2nd time i used them just a few mins ago, i was flushing my ear out. I got hot and dizzy and i couldnt stand. I was on on the floor and everything was spinning. My hands were tingling a bit so i thought i might be about to faint. I asked my wife to get my BP monitor. It was 177/99. The dizziness stopped after a bit lying on the bathroom floor. Eventually my BP became stableish. Just wondering if anyone knew what the heck happened. Been diagnosed with hyper pots fyi. 

  10. On 10/16/2020 at 12:33 PM, KiminOrlando said:

    Every time I have anesthesia, I faint for the next week. There is nothing they have been able to do about it. I plan for it and have help come stay with me. Don't be surprised if your body reacts this way. Maybe you will get lucky and you won't, but prepare for a flare.

    Do u have regular or hyper pots?

  11. 18 hours ago, p8d said:

    I never needed a hearing because I was approved upon application. Like @PistolI was honest in my answers. I couldn’t even fill out the form myself I was so ill. Your medical records are vital. You need to have everything documented by a Dr. This video should help https://vimeo.com/434576980 It’s from Dysautonomia International and is with 2 disability lawyers specifically about this in dysautonomia. It was filmed earlier this year so is current. Good luck and please let us know how it goes.

     

    Thank you. Will check this out!

  12. So im getting my tonsils removed next month. Im 33. The dr said shes gonna keep me overnight due to my condition. This is also my first surgery. Anything i should be worried about? Any prep? This was my first time seeing this dr. She was like yeah i want to do this in the hospital but keep you overnight for observation due to your condition. She actually knew what hyper pots was. I thought all tonsil surgeries went this way?

     

    I get bacterial infections on my tonsils once or twice a year. Ive been wanting to do this for years but since pots came in my life, anytime i start to get sick, my HR goes high as if im not taking my beta blocker. My heart also beats hard out of my chest like a cartoon in love. The last time my tonsils were starting to collect bacteria, they got so swollen the first day. i couldnt sleep because i couldnt breathe in my sleep. I stayed up all night and got antibiotics.

    So i think its really time. She said my left tonsil was larger than my right indicating scar tissue buildup from the infections over the years. Im wondering if this is why i cant breathe in my sleep on my back anymore.  

    Ive never had surgery before. Im worried about being put to sleep over everything..wondering how my body will react.

  13. So i have a phone hearing coming up. I have been diagnosed with hyper pots and hypermobile eds. 

    I take

    carvedilol 25mg twice a day

    Xanax 1mg 4x a day

    Florinef 0.1mg half a tablet once a day

    Midodrine 5mg if necessary

    The xanax is not prescribed by my autonomic dr. Everything else is.

    This illness has changed my past 2 plus years of life dramatically. What words of wisdom do any of you have who have been through a hearing for SSDI?

    Thanks all. 

  14. My coreg was upped to 25mg twice a day and my autonomic dr. added Fludrocortisone 0.1mg once a day in the morning to take with my coreg.

    This was a decided route because i have low renin and low aldosterone which was was discovered by my endocrinologist. 

    I just had the appointment and already forgot how this is supposed to help me with the hyperadrenergic problem. 

    I was also just diagnosed with Heds. Not sure if this relates. 

    Can someone shed some knowledge on every single way this medicine can help me? Thanks for the knowledge. My pharmacist said i cant take the Fludrocortisone and ibuprofen together. Why is that?(my wife picked it up and told me this)

  15. 9 hours ago, Pistol said:

    Dear @Derek1987 I have found the following article that mentions low renin/ low aldoaterone in detail. Unfortunately it is in medical lingo so I find this info interesting ( from this web site:  https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2265.2007.02898.x

    Low‐renin/low‐aldosterone hypertension can be acquired or genetically determined (Fig. 1). Several conditions should be considered in the differential diagnosis of acquired forms. First, a very generous dietary sodium intake may underlie this functional phenotype in essential hypertensive patients.

    This means that a high sodium diet CAN cause it.  

     Second, low‐renin coupled with low‐aldosterone plasma levels may have pharmacological causes. Drugs reducing the renin‐angiotensin‐aldosterone system (RAAS) activation include beta‐blockers and centrally acting agents such as clonidine and alpha‐methyldopa.22, 27 Also, nonsteroidal anti‐inflammatory drugs (NSAIDs) and newer COX‐2 inhibitors inhibit the RAAS by suppressing intrarenal prostaglandin and renin secretion directly and by reducing sodium excretion, thus favouring volume expansion and aggravating hypertension.

    These drugs are commonly used in POTS and if you are taking them they may be a cause - please discuss with your physician. 

    Third, a low‐renin/low‐aldosterone status may derive from a marked reduction in nephron number and function. These conditions include diabetic nephropathy, chronic glomerulonephritis, congenital solitary kidney, unilateral nephrectomy or ageing. 

    If you are diagnosed with any of these conditions it may be a cause. - Here is another related cause:

    Liddle's syndrome is inherited as an autosomal dominant condition and is characterized by hypokalaemia associated with low‐renin and low‐aldosterone levels.  Hypertension is often present in early childhood or at a young age and families show a high frequency of cerebrovascular events. 

     

    A perhaps easier to understand article from webMD can be found here: 

    https://www.webmd.com/hypertension-high-blood-pressure/renin-test#:~:text=High renin with normal aldosterone may show that,sign that there’s a problem with your kidneys.

    The endo doc just messaged me on the app saying.

    "Are you taking the coreg? That could lower the renin as well.

    Otherwise low renin and aldosterone can be a sign of very rare issues such as congenital adrenal hyperplasia, Cushings disease, many others. We can test for these though your symptoms don't fit well
    Question - have you ever taken fludrocortisone in the past ?"
     
    I responded with yes i take coreg twice a day and have never taken fludrocortisone. 
     
    so...yeah.
  16. After getting blood work done twice from the endo doc, the results say i have low renin and low aldosterone. FYI i have been diagnosed with hyper pots. What could this mean? I dont know when ill hear from the doctor. I just got a notification from the doctor with brief commentary that doesnt explain too much on his app.  He said it could be from midodrine but i seldom take it because my blood pressure is already too high. I take it occasionally when my BP dips too low. Its probably been a couple of months since ive taken any.  I responded back and told him that. Thoughts?

  17. 4 hours ago, Pistol said:

    @Derek1987 - here is an excellent article that explains adrenaline rushes, what causes them and what they do to our bodies. It explains the shaking you experience as well. 

    https://www.medicalnewstoday.com/articles/322490#takeaway

    I feel awful that you saw psychiatrists that were assuming and judgmental. Of all people - the mental health community should be aware not to be like that!!!!! But at least now you are in good hands with your current psychiatrist!!! 

    @KiminOrlando - I too suffer from HPOTS and frequent sympathetic overcompensation ( adrenaline rush ). I have learned the hard way that once it starts there is no turning it around, at least it is very difficult for me. What DOES help for me is avoiding the triggers. I do not expose myself to stimulating environments ( I am house bound, so that is easy to say ), take frequent rest periods ( for example for every 5 minutes of activity I take 5 minutes of rest ) and even treat movies or phone calls as activities requiring rest. In my case if I let things go too long I experience such severe adrenaline rushes that I take seizures from them, although I hardly get them anymore, thanks to medication, IV fluids and avoidance of triggers. 

    Deep breathing and rest in a dark, silent room can at times help to calm down the oncoming rush but rarely for me. 

    BTW - caffeine helps me as well, due to its vaso-dilatory effects. And it too puts me to sleep!!!!!!

    I wonder why caffeine helps yall but is like poison to me. Definitely doesnt help me sleep.

×
×
  • Create New...