Derek1987

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.

2 hours ago, KiminOrlando said:

I really hope you have an attorney. 

I do. We are gonna prepare later this month. But i wanna prepare as much as possible. If im not approved and the fact my long term disability runs out in march, thats homeless talk. 

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. 

Too tired right now to even read this whole thread. Only awake because my wifes awake. Struggling to stay up. Went out of the house today. Sadly thats all it has taken to feel like ive been awake 36 hours. 

On 9/13/2020 at 9:37 AM, Elegiamore said:

I went to three acupuncture doctors.  Each one of them told me that with my extremely high norepinephrine readings with hyper A POTS, that they wouldn't touch me because they could cause a malignant hypertensive crisis.  My experience.  I was very disappointed.

😬

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)

5 hours ago, haugr said:

@Derek1987 Have you had your testosterone levels checked by chance?

I did in late 2018. It was fine then. 

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.

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?

Ive gotten sick from smelling certain foods cooking. Its very seldom but i noticed it. I dont know what my vitals were but id get really sick.  I dont know how to explain what that "sick" feels like. Hasnt happened in awhile. 

Drank a 7.5 oz coke and was sick all day and night and overloaded with anxiety. I used to down 200mgs of caffeine and get everything done. Now 23mg puts a hurt on me.

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.

1 hour ago, KiminOrlando said:

That is good to know. I hadn't pursued it because I was afraid once a doctor saw one of those meds on my chart, they wouldn't take me seriously. I had a hard enough time as it was.

Ive had anxiety my whole life but never got treatment.  After my first fainting incident in 2017, my anxiety increased big time. I still was able to work and i didnt have many symptoms other than bad anxiety. My HR was probably sky high and didnt even know it.

Anyway i went to a psychiatrist. She treated me like crap. I had to change to a different one in the same clinic because of schedule conflicts. She too treated me bad as well. Later on it dawned on me they probably think i just wanted benzos. They judged me. Ive never even been drunk or smoked weed ever. After several ssris and the way they treated me and my increasing fatigue, i just gave up. Then a year later is when i completely broke down in health. 

If you really think you need it, you could talk about it. I wouldnt worry about what people think. As long as your honest, who cares. By like i said, if you can live without it, live without it. When i come off of it, ill have to taper off for a long time because of the potential of deadly withdrawals. 

By having this condition, it gives you credit as to why you need it. I bet those other doctors would feel guilty for judging me if they knew i had an underlying condition. Im sure they get people who fake it but they cant assume everyone is a junkie.

12 minutes ago, KiminOrlando said:

I have the opposite happen for me. I can drink a large coffee and immediately take a nap. It stops that buzzing feeling in my body. It is totally nonsensical. I am wanting to try it for headaches and my hands.

I still think it is probably your sympathetic nervous system, I just don't know what to do about it. I have heard some people take valium or an antianxiety med and it helps. I would love to be able to try something like that, but no doctor has been willing to prescribe that. Have you talked to your doctor about that? Are they open to try meds or do they just leave it as something you have to deal with?

I take xanax. 1mg 4x a day. Or if im having a horrible spell i can take 2mg at once. After my 2 fainting spells in sept 2018, i was never the same including huge amounts of anxiety. It was so bad, i sought out a "crazy clinic". This was before i knew i had hyper pots. They referred me to a psychiatrist. When i saw him, he easily prescribed the meds to me.  Hes the most caring doctor i have. He even showed my adrenaline test results to a neuro doc in his free time and learned about my condition. 

I say if you can live without it, do it. But i couldnt function without it. Not yet at least.

54 minutes ago, KiminOrlando said:

I have a theory on this, but it is just a theory, not actual medical information. I believe HyperPOTS typically causes an overly responsive sympathetic nervous system. The sympathetic nervous system triggers vasoconstriction. Does it cause hypoxia from decreasing blood flow? You felt better when they gave you meds that calmed your sympathetic nervous system.

My hands go numb, cold and purple from vasoconstriction. I've been planning on an experiment when I get a chance. I am going to try to use caffeine (vaso dilator) to see if I can make my hands better. I bought some caffeine pills. 

Anyone tried to use caffeine to calm symptoms?

Caffeine boosts my adrenaline and hurts me. I used to down 200mg with a 5 hour energy shot back in the day and nothing could stop me(in a good and i guess unhealthy way). I cant even tolerate a 12 oz coke with 34mgs anymore.

I have a soundbar with a sub in my bedroom. I listened to some rock music. It was loud. I was enjoying it. After the 2nd song, my hands were extremely hot and sweaty like never before. Like my hands were wet. After the 3rd song, i felt like i was possibly going to faint. And i am in bed. Not sure but my body had a panic reaction if anything. A few mins later my hands turned from really hot to very cold. Hours later i am still feeling the adrenaline. Shaking and anxiety. Not like it was but im suffering.

My last day of work towards the end of 2018, i fell out. I didnt black out but i could tell my body was trying to faint. This was my 3rd incident and 2nd in a week. This was before i knew what was wrong with me(hyper pots). So on the way to the hospital i am feeling normal and i think its because i felt calmer help was here. When i arrived at the hospital, i was just laying there forever waiting on a room. I started to panic and my body started trying to faint again. This lasted probably over an hour until they put ativan straight into my bloodstream. I calmed down and the fainting feelings went away. 

Why why why? 

The only time this happened to me was recovering from a full faint at olive garden. This was before i knew i had this condition and my first faint issue. When i gained my hearing and vision back, i couldnt move or speak for a few minutes. When the paramedics arrived they were asking me questions for insurance purposes. Some time had passed and i could barely get words out. It was like trying to pick up a really really heavy weight in the strength it required to speak. They wouldnt even let my wife answer for some reason. 

Even when i was in the ambulance it was hard to speak but he did say my blood pressure was coming back up. By the time i arrived at the hospital and was in a room, i was back to normal. Just seriously freaked out. 

9 hours ago, Pistol said:

@Derek1987 - our local hospital sends bills to collection agencies if not paid, but they send several reminders first. I believe it is legal and has nothing to do with Hippa, since no medical information is exchanged. -- Have you considered a payment plan? I recently was hospitalized for a week and racked up a big bill. I am on a monthly payment plan to pay it off over time. Also - have you applied for financial assistance? Some providers - especially hospitals - offer this based on your income. 

I cant afford a payment plan at the moment. With both my wife and i disabled with 2 teenage girls, it is just not possible right now. I applied for assistance through the hospital and was denied because of "too much income". Lol.

1 hour ago, Pistol said:

@Derek1987 - do you feel dizzy when this happens? I am glad that @MomtoGiuliana shared that she also has this symptom. I am not sure what would cause this but I hope it is " just " POTS 🥴! 

Dizzy as in the room spinning? No. More like sometimes i feel like im gonna fall which i react to it. I guess cuz im moving and i shouldnt be so i think im  gonna fall. Idk

2 minutes ago, MomtoGiuliana said:

When I have a severe bout with POTS I have this symptom.  My head would literally bob up and down when I had severe POTS 17 years ago.  I also remember a swaying motion when I would sit certain ways that would come and go. It was scary.  I am not sure what causes it but I think just out of balance sympathetic activity.

Thank you for sharing. It is comforting to know it just might be pots or whatever. Ill still keep stressing these events to my doctors. It was the worst movement i believe i have had thus far. Its still doing it. Whenever im on a boat ride, it lasts the whole day.

Just took my BP. 150/94. Granted i was upright and on my feet for 5 mins. I have hyper pots so my pressure increases. I layed down and immediately saw a lot of stars. Thats actually why i took my BP. To see if it was too low.

My BP is always all over the place from minute to minute so i cant really rely on it to tell me anything other than my nervous system isnt working right.

I know that ive been having a rocking sensation for several months now. I wasnt always like this. I also have probably 100 or more muscle twitches a day. Thats only been going on a few months. Ive asked my wife am i moving several times and she would say no. I got sick earlier from the rising temperatures. It was 73 in the house. Normal to others, not to me. 

Just now i was laying in bed on my side with elbow in the bed for support as i was about to eat.   i could feel my head bobbing up and down. I feel like im on a boat right now with gentle waves. I asked my wife to see if im moving. I said im gonna hold my breath. And yes she saw me moving finally. 

I wouldnt want this to be parkinsons. I know there was some other illness with rocking back and forth. Anybody have this experience? Thoughts? Suggestions? I dont see my neuro till april. I freakin missed my appointment with him so now i have to wait longer. 

So i take coreg 12.5mg twice a day. In the morning its one pill plus half a pill. At night i take just one pill. 

Right now my BP is 148/70 at 49BPM(laying down)

I have hyper pots so both of my numbers arent good when i stand up. 

Is there a solution to getting my top number down without making my bottom number go too low? Its always like this. Im afraid if i add another blood pressure medication in the mix, my bottom number will drop too low. Anybody have experiences with this problem?

On 2/21/2020 at 12:09 PM, Sushi said:

They are afraid that you might throw up—at least that is what they told me.

Makes sense. They made me extremely naseous and out of it. They are talking about doing a 3rd one on me possibly soon. Idk why. I guess to see how well the meds are doing even though the past few months they do a poor mans tilt and see my numbers are still screwed. 

On 2/20/2020 at 9:27 AM, FileTrekker said:

I really liked a lot of the Jackie Chan stuff, Mr. Nice Guy, Who Am I, Rumble in the Bronx and all that. I'm by no means an expert though.

I have all of those in my collection lol. You should check out his other work. This is from police story 2. 1 has amazing fights and stunts as well.