Derek1987

I have asked this a long time ago and asked around. Nobody seems to have the same issue as me. I was diagnosed with hyper pots. My adrenal glands also don't make enough renin or aldosterone. I think that's where those comes from.

Even when I first got really really sick, I could tolerate caffeine. Now even a few sips of a coke now shoots up my blood pressure and causes bad anxiety to where I'm shaking.

I'm wondering if a particular medicine is causing this in combination with the hyper pots of course. I take coreg, fludrocortisone, klonopin. 

Strangely enough, I can eat chocolate that naturally has caffeine with no issues.

Any ideas on what could be happening? I suspect it's either coreg or the klonopin in combination with hyper pots. I really need caffeine in my life. Maybe it's something else? What do you guys think?

So I take coreg 25mg twice a day. My autonomic specialist quit recently so I got this new medication listed below from my primary care doctor. The reason being is my top blood pressure number is always high even if my bottom number is very good. Whenever I stand up, my bottom number does get too high as well eventually however. 

Anyways, the medication is called amlodipine besylate 2.5 MG.  My primary care doctor claims this medication is good at helping lower the top number. 

I have to go out today so I'm going to try it tomorrow for the first time. I would rather be at home and see how my body reacts to it. I was curious if anyone else was prescribed this medication. Why was it prescribed? How did your body react? Does it really target the top number? 

On 2/8/2022 at 6:23 PM, Pistol said:

I had additional inflammatory issues going on as well as sepsis after the COVID, so I was out of commission for about three months. Then the POTS started to really get bad again, when I was ready to be more active. 

 

I do the bicycle as well as leg presses. That means bending my knees and pressing my feet into the bed until my butt lifts up. And bringing my knees to my chest and rocking back and forth ( really gets to your abs if you do it right! )

Are you doing alright now? 

I'm just getting over it. Still a lingering dry cough and that's it.

My wife, daughter, niece visited family. My in laws. I didnt go. My mother in law had covid but wasn't aware. She was sick and tested positive a couple days later. She's vaccinated plus boosted. My 1 year old niece lives with me. All 3 of them got sick. Very quick. It hit me a couple days later. 

Eventually we all tested positive. Everyone is fine now. As far as how it messed with my pots...well anytime I get sick now, My heart rate and blood pressure go really high. It did this for maybe a week. I was very fatigued the 2nd week. I couldn't get out of bed for 3 days other than to use the bathroom or shower. My wife was that fatigued too. Another weird symptom is it felt like I had blood pooling in my hands. They felt stuffed. And my feet were pulsating for a few days. That's gone now.

It's definitely NOT the sickest I've ever been but pots made it 10x more annoying. When I got up I'm not sure if I was having palpitations or what. My lips would get a shock or something and go numb for a second while standing. This only last a couple of days. 

I would compare it to a mild flu I guess. The pots just made it really crappy. 

On 11/7/2021 at 5:49 PM, Midnight_Casper said:

Hello, @Derek1987.
I wanted to ask you if you got a diagnosis about the rocking-bobbing symptoms and if you're feeling better.

I have the exact same symptoms, rocking-bobbing-floating-swaying, 24/7, for more than a year, and I feel them violently when sitting and lying down.

I have to consciously subtly move my body and tighten my muscles 24/7 to somehow mask the inner motion feelings.

I also have POTS.

Seems like out symptoms are identical to MAV (Migraine Associated Vertigo) / VM (Vestibular Migraines) and/or to MDDS. 

I have found this forum where there are a lot of people with similar symptoms.

https://mvertigo.org/ 

No I was never given an answer. 

The black and white cat is my new cat named Rocky. We've had him for a year now since he could barely walk. He's so lazy now. And yes he loves to sleep on his back. We got our older cat storm a new friend because the orange and white cat disappeared. Either an animal or a kid killed him. 

13 hours ago, Pistol said:

@Derek1987 - although I am sorry you had to spend that much time in the ER it is a relief to hear that you don't have a blood clot. The trip definitely was not a waste b/c the first thing to make sure you don;t have is a clot. Once that is ruled out everyone can take a breather and the emergency is over. Hope the PCP has any ideas. Good luck! 

( Oh - and btw - maybe you should just CHOOSE to get better? Funny none of those highly trained docs have ever suggested that 😉! )

Yes that was my main motivation in staying. The seriousness of it. I hope the ultrasound was adequate enough testing. But we will see where it goes from here. 

Dysautonomia is a cruel disease. I wish the medical field was educated in it. When i can afford it, i am going to buy those leg compressor machine things. They have bags that go all the way up to your thigh that inflate and deflate. I can have that on while i lay down. And maybe an exercise bike to get on at least once a day to keep my blood flowing. Just dont want exercise to overload my body with adrenaline. Sometimes when i do a couple of chores and i go too fast, i might pay for it all day and night. 

16 hours ago, JimL said:

Where is this? I am starting to wonder about the competence of the medical profession. I am seeing a decline in IT. It's about shift left management which is pushing duties and responsibilities to lower cost tiers. It's happening where I work, so the help desk is having to handle things they aren't competent at and so on. I think the medical profession is in the same boat. PA's and NP's instead of MDs and NA's instead of RNs etc. No one knows *** they are doing. 

Memphis, TN. One of the worst cities in the US. They were so swamped, they had the national guard helping and it still took 300 hours. I really have no idea how i made it. I tried to recline the best i could. 

And yes they usually pair me with a NP. I even got a student doctor at one point last night. Then the real doctor came and told me the news and jetted. 

When i was a kid, the show ER really had me believing thats how hospitals work lol. You know caring, urgent, know everything. Almost every person had some sort of attitude. Its like that every time. I believe cause im male and because of my age. I can understand to an extent because they are ignorant but illness doesnt have an assigned age to it. And nobody knows what dysautonomia is. Nobody. 

Last night when i was being rolled in the bed to ultra sound and then stopped, the ceiling kept moving but i wasnt. If they only knew the stuff we go through.

 Because of covid and the strain on the hospital, i waited in the lobby 10 hours or so. So i was in there like 13 or 14 hours. Idk how i did it. But they took blood and did an ultrasound and the doc said theres no clot and to get with my pcp. 

Of course i kept getting judged when i told them my lack of mobility situation. And of course nobody knew what pots or dysautonomia was. The lady doing the ultrasound was like so do u choose not do anything? Like yeah i chose to lay down for 2 plus years, struggle financially etc. Anyways next step, the pcp. 

Alright. Guess im going to the er in a bit. 

Can florinef cause swelling in just one leg? My right leg(below the knee) and foot are swollen a bit. I started florinef in september. I believe its gradually built up. I might go to the hospital tomorrow to rule out any serious problems. 

Its helped a lot with me feeling faint when i stand up. I started in early september. It has made a big difference. However my right leg is a bit bigger than the other. Im not sure if thats related to florinef but i need to get that checked out. I have to make sure on my next doctor visit next week that my potassium levels arent too high from florinef. So just starting myself. I immediately got relief on the 2nd or 3rd day. I used to feel really lightheaded when i stood up. Rarely happens now. I still suffer with lots of other things though. 

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. 

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. 

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. 

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. 

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"

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. 

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. 

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. 

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. 

2 hours ago, KiminOrlando said:

I have hyperPOTS. I hope you don't have the same trouble.

After u and @Pistols comments, im scared now lol. 

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?

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!

On 10/14/2020 at 10:40 PM, MTRJ75 said:

I'll let you know after I have my hearing on November 19th. Lawyer said it would take around a year, but got a letter about a month after I talked to him in August. I guess being able to do everything by phone speeds it up. 

Yeah please do. I cant screw this up with my nervousness.