Adrenaline driving me crazy

[KaciCrochets]

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.

[DizzyPopcorn]

I cannot give you reassurance, as i do not know if i have pots or not yet, but i wish you well and hopefully you get a good neuro appointment.

Im curious though, you took lorazepam for only 5 weeks and it left you with problems for 2 whole years? Thats crazy

 

Oh and i almost forgot... Welcome to the forum!

Edited September 8, 2019 by whoami
Spacing

[KaciCrochets]

It is crazy, I totally agree. I don't tolerate meds well. When I found my dysautonomia doc a year after that, she said psych meds can really mess up your brain if you have POTS, she has benzos on her Do Not Take list that she gives patients. I know some people are helped by them, though. 

[DizzyPopcorn]

I guess i fit that criteria. Unfortunately i take a low dose clonazepam (0.25 or 0.5) right now as needed. I have some pretty big anxiety and its the only thing helping me while i wait to see my specialist.

[KaciCrochets]

I wouldn't worry. I knew I was in trouble when I started needing a higher dose to get the same effect. It takes normal people months or years for that to happen, but for me it was a couple of weeks. My brain is hypersensitive to everything, I hate it.

[DizzyPopcorn]

34 minutes ago, KaciCrochets said:

I wouldn't worry. I knew I was in trouble when I started needing a higher dose to get the same effect. It takes normal people months or years for that to happen, but for me it was a couple of weeks. My brain is hypersensitive to everything, I hate it.

I'm sorry to hear it. Maybe pistol can help with your situation? @Pistol

[Pistol]

@KaciCrochets - I too get GI issues when I flare with hyperadrenergic issues, for me they come hand-in-hand. PM me if you would like details - I am always here for you!!!!

[Clueingforlooks]

So sorry to hear, adrenaline is awful. I’m struggling with unpredictable and mostly constant adrenaline too. My stomach has been acting up as well! I’ve tried different ppi meds to what I was on before. They worked for a bit but the acid is getting worse again. Don’t know what do to either as I can’t keep increasing the dose. Seems like my body gets immune to them after a bit. 

Hope you can find something to help! 

[KaciCrochets]

Clueingforlooks I feel you. I got great sleep on the hydroxyzine the first two times I took it. After that, not so much. It helps the burning but I'm still surging constantly. I feel lucky I was only up with surges for three hours before I managed to fall asleep, but I sure feel like garbage this morning. Do you normally have stomach issues with adrenaline? This is a new symptom for me. 

[Derek1987]

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.

[DizzyPopcorn]

7 minutes ago, Derek1987 said:

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.

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

[Derek1987]

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.

[KaciCrochets]

1 hour ago, Derek1987 said:

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.

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?

[DizzyPopcorn]

3 hours ago, Derek1987 said:

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.

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? 

 

[Derek1987]

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.

[Derek1987]

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.

[Scout]

On 9/9/2019 at 12:41 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'm so sorry you're going through this.

Similar to yourself, I had been coping OK for some years (it was still bad, but tolerable), and then, suddenly got a lot worse again — several months ago. Very similar symptoms to yourself. 

I wish I could offer some advice, but simply wanted to say we are here for you. 

Beta blockers also didn't work for me so hoping to find something very soon that actually does work, and I hope you also find something, too! 

P.S. Just noticed your username! I am just learning crochet at the moment and loving it. Feel free to PM me if you ever want to chat! 

[Clueingforlooks]

23 hours ago, KaciCrochets said:

Clueingforlooks I feel you. I got great sleep on the hydroxyzine the first two times I took it. After that, not so much. It helps the burning but I'm still surging constantly. I feel lucky I was only up with surges for three hours before I managed to fall asleep, but I sure feel like garbage this morning. Do you normally have stomach issues with adrenaline? This is a new symptom for me. 

If my adrenaline is really flaring (like a sudden stressor) then I could get a flare of my IBS and some nausea. But the severity of the acid reflux that I’m getting now isn’t usual for my adrenaline to cause. My only thought is that my body is getting more and more irritated in the long term getting stuck in fight or flight so it’s creating more problems. 

I’ve also been having a problem with salt causing more adrenaline than it ever used to. Have no idea how I’m going to fix it. But even small amounts of salt in food lately spike my bp and my adrenaline gets worse and worse.  My resting bp can get quite hypotensive so its not like I don’t need the salt. Ugh it sure is frustrating.

[KaciCrochets]

6 hours ago, Derek1987 said:

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.

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? 

 

 

[KaciCrochets]

2 hours ago, Scout said:

I'm so sorry you're going through this.

Similar to yourself, I had been coping OK for some years (it was still bad, but tolerable), and then, suddenly got a lot worse again — several months ago. Very similar symptoms to yourself. 

I wish I could offer some advice, but simply wanted to say we are here for you. 

Beta blockers also didn't work for me so hoping to find something very soon that actually does work, and I hope you also find something, too! 

P.S. Just noticed your username! I am just learning crochet at the moment and loving it. Feel free to PM me if you ever want to chat! 

Thank you, @Scout! I learned to crochet exactly one year ago, I'm hooked on it (pun intended)! I can make anything except sweaters, for some reason I can't fathom. I've sold quite a bit of crochet, and it's so nice to have a little income since I've never been able to hold down a job. 

It's so scary when symptoms get worse for no apparent reason. I had been doing so well, as long as I didn't push myself too much. Then bam! I had been keeping one eye on the future with some trepidation but now I'm a little bit terrified of how the rest of my life is going to go. Can't take anything for granted, that's for sure.

[KaciCrochets]

23 minutes ago, Clueingforlooks said:

If my adrenaline is really flaring (like a sudden stressor) then I could get a flare of my IBS and some nausea. But the severity of the acid reflux that I’m getting now isn’t usual for my adrenaline to cause. My only thought is that my body is getting more and more irritated in the long term getting stuck in fight or flight so it’s creating more problems. 

I’ve also been having a problem with salt causing more adrenaline than it ever used to. Have no idea how I’m going to fix it. But even small amounts of salt in food lately spike my bp and my adrenaline gets worse and worse.  My resting bp can get quite hypotensive so its not like I don’t need the salt. Ugh it sure is frustrating.

Oh wow, that's got to feel awful. I can't even begin to think of why that would happen. It's crazy, all the issues POTS can cause. I read that more people are diagnosed with POTS than with MS, ALS, and Alzheimer's combined, and that POTS patients' quality of life can be on par with congestive heart failure and COPD, but still most people (and doctors!) have never heard of it. That blows my mind. We suffer so much but there is so little knowledge about how to help us. I hope someday they get us figured out so future generations won't have to go through what we do. 

[DizzyPopcorn]

38 minutes ago, KaciCrochets said:

Oh wow, that's got to feel awful. I can't even begin to think of why that would happen. It's crazy, all the issues POTS can cause. I read that more people are diagnosed with POTS than with MS, ALS, and Alzheimer's combined, and that POTS patients' quality of life can be on par with congestive heart failure and COPD, but still most people (and doctors!) have never heard of it. That blows my mind. We suffer so much but there is so little knowledge about how to help us. I hope someday they get us figured out so future generations won't have to go through what we do. 

And people ask me why i hate doctors (not all) ... How can you do your job everyday and not stay up to date. To me, this screams "im just doing this for the money". It is not normal that your patient know more about a condition than you do. 

[Derek1987]

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.

[Pistol]

2 hours ago, DizzyPopcorn said:

And people ask me why i hate doctors (not all) ... How can you do your job everyday and not stay up to date. To me, this screams "im just doing this for the money". It is not normal that your patient know more about a condition than you do. 

Believe it or not - I once tried to give an article about POTS to one of my docs and he said: " Sorry - I don't do chapters ". I was wondering - well, how then did you make it through medical school? He said that I was his only ever dysautonomia patient and if there were more he might read up on it but since it was only me …. I still have not forgiven him! 

[DizzyPopcorn]

4 minutes ago, Pistol said:

Believe it or not - I once tried to give an article about POTS to one of my docs and he said: " Sorry - I don't do chapters ". I was wondering - well, how then did you make it through medical school? He said that I was his only ever dysautonomia patient and if there were more he might read up on it but since it was only me …. I still have not forgiven him! 

What the h***. You're right about not forgiving him.