New here. Just needed to vent.

[Pistol]

@blizzard2014 yep, hyper-POTS definitely causes you to pass out. I used to pass out all over the place and take seizures, too. I was told in my case is that if my BP drops suddenly from orthostatic stress then I pass out from no blood flow to brain from no BP. When my BP and HR go up ( from excessive vasoconstriction caused by sympathetic overcompensation , the ANS trying to compensate but in severe ways ) then I suddenly have no blood flow to the brain and take seizures ( called anoxic seizures but some people call them convulsive syncope ).  POTS can pretty much do to us whatever it wants. --- Regarding your TTT: I had to stop ALL my meds for each of my TTT's, no fun. I really don't get that: I can see that you need to stop the meds for accurate results but of course we would be highly symptomatic without our meds … they should really do TTT's before we start meds at all, first test to be done!!! --- I usually do not go as high with my BP as you since I seize before it goes that high. But my sister has high BP like you, also has POTS. She took clonidine too but still went really high. She started Carvelidol and Diltiazem and Wellbutrin and is doing PERFECT!!! Used to be 220/125 all of the time and could not do anything and almost lost her ability to work because of it, now she runs 120's/70 and does anything she wants, she is completely stabilized. My sisters and my mother and I all have hyper-POTS and I assume we all have the same mechanism behind it, so we all respond to these meds. That does not mean it will work for you too but maybe worth a try? --- Best of luck. 

[blizzard2014]

16 hours ago, Pistol said:

@blizzard2014 yep, hyper-POTS definitely causes you to pass out. I used to pass out all over the place and take seizures, too. I was told in my case is that if my BP drops suddenly from orthostatic stress then I pass out from no blood flow to brain from no BP. When my BP and HR go up ( from excessive vasoconstriction caused by sympathetic overcompensation , the ANS trying to compensate but in severe ways ) then I suddenly have no blood flow to the brain and take seizures ( called anoxic seizures but some people call them convulsive syncope ).  POTS can pretty much do to us whatever it wants. --- Regarding your TTT: I had to stop ALL my meds for each of my TTT's, no fun. I really don't get that: I can see that you need to stop the meds for accurate results but of course we would be highly symptomatic without our meds … they should really do TTT's before we start meds at all, first test to be done!!! --- I usually do not go as high with my BP as you since I seize before it goes that high. But my sister has high BP like you, also has POTS. She took clonidine too but still went really high. She started Carvelidol and Diltiazem and Wellbutrin and is doing PERFECT!!! Used to be 220/125 all of the time and could not do anything and almost lost her ability to work because of it, now she runs 120's/70 and does anything she wants, she is completely stabilized. My sisters and my mother and I all have hyper-POTS and I assume we all have the same mechanism behind it, so we all respond to these meds. That does not mean it will work for you too but maybe worth a try? --- Best of luck. 

Thanks for the kind words. I did pass out only once as a teen where I was shaking upon standing. That's crazy having seizures. I'm glad I don't have those. I hope you're feeling better today. J

[Debbie Rose]

Brokenlittleteapot- Welcome to our group! You will find lots of help and info from a lot of friendly people. I too have NCS and it is a tricky condition but each of us experiences it a little bit different which makes it so much harder to manage> But hopefully you will find some answers and friends along the way

[Brokenlittleteapot]

Thank you Debbie Rose 💗💞 much appreciated. 

 

Has anyone else had a severe drop in BP when sleeping? Because mine got to 87/48 last night and I felt awful/sleepy all day. And it legit scares me. All the doctors are telling me I won't die but it sure feels like I will , ah Dysautonomia. The joy. Not. Lol

[Pistol]

@Brokenlittleteapot All I can tell you is that indeed it is true - we DO NOT DIE from these swings, but I know it sure feels like it! With the low BP I have noticed that the worst that can happen is we pass out if it is sudden or we are tired if it is slow and lasts. Well - more than that - fatigued, weak, confused, scared, …. With me I personally prefer to pass out because it is like a RESET button - when I come to I often feel better ( but I am also lying down, so that may be helpful. I guess if we do not voluntarily lie down our bodies will make us …? ) --- High BP is a little trickier for me because it does not so easily go away with lying down. And the symptoms ( CP, Headache, anxiety, excitement, tremors, coldness and so on and on and on … ) last a lot longer. And it is more difficult to get down. -- I know what it is like to have it while you are sleeping, depending on the type of sleep I had I can usually predict exactly what happened with my BP during the night. - I guess what I am trying to say is that these swings are common in dysautonomia patients and - again - they do not kill us. They just make our lives miserable.  But we just have to keep on trucking!!! 

[Brokenlittleteapot]

57 minutes ago, Pistol said:

@Brokenlittleteapot All I can tell you is that indeed it is true - we DO NOT DIE from these swings, but I know it sure feels like it! With the low BP I have noticed that the worst that can happen is we pass out if it is sudden or we are tired if it is slow and lasts. Well - more than that - fatigued, weak, confused, scared, …. With me I personally prefer to pass out because it is like a RESET button - when I come to I often feel better ( but I am also lying down, so that may be helpful. I guess if we do not voluntarily lie down our bodies will make us …? ) --- High BP is a little trickier for me because it does not so easily go away with lying down. And the symptoms ( CP, Headache, anxiety, excitement, tremors, coldness and so on and on and on … ) last a lot longer. And it is more difficult to get down. -- I know what it is like to have it while you are sleeping, depending on the type of sleep I had I can usually predict exactly what happened with my BP during the night. - I guess what I am trying to say is that these swings are common in dysautonomia patients and - again - they do not kill us. They just make our lives miserable.  But we just have to keep on trucking!!! 

Thank you for that, I really needed to hear it! I've been so scared and concerned! I was also scared of an adrenal tumor so I had them do a CT scan of the abdomen. It was that bad!

[blizzard2014]

5 hours ago, Pistol said:

@Brokenlittleteapot All I can tell you is that indeed it is true - we DO NOT DIE from these swings, but I know it sure feels like it! With the low BP I have noticed that the worst that can happen is we pass out if it is sudden or we are tired if it is slow and lasts. Well - more than that - fatigued, weak, confused, scared, …. With me I personally prefer to pass out because it is like a RESET button - when I come to I often feel better ( but I am also lying down, so that may be helpful. I guess if we do not voluntarily lie down our bodies will make us …? ) --- High BP is a little trickier for me because it does not so easily go away with lying down. And the symptoms ( CP, Headache, anxiety, excitement, tremors, coldness and so on and on and on … ) last a lot longer. And it is more difficult to get down. -- I know what it is like to have it while you are sleeping, depending on the type of sleep I had I can usually predict exactly what happened with my BP during the night. - I guess what I am trying to say is that these swings are common in dysautonomia patients and - again - they do not kill us. They just make our lives miserable.  But we just have to keep on trucking!!! 

I have had terrible night sweats and dreams that I am seizing up and shaking in my sleep. Like hands clenching so hard that I even have fingernail marks in the palms of my hands when I wake up. Could this be blood pressure? This week, I have been waking up and tossing and turning every 30 minutes on bed. I'm wired but tired. Right now I feel again like I have not slept in a week and I am too wired to take a nap. Last week I was too weak to even sit up in a chair for 7 days. I was laying down so much. I was almost non-functional in my ADL's. I just have fast heart rate pounding feeling this week, no sweats even though I feel hot, and constant urination all night long. Last week I was so cold despite hot weather, tired, and backed up with my bowel. That is what finally lead me to come on this forum to try and seek some sort of answers. I drank a gang of double shot expresso's last week and went right back to sleep like it was nothing. 

[blizzard2014]

This week it is taking me 2 hours to fall asleep after laying in bed. Last week I was out within minutes and did not wake up for at least 7-8 hours straight in same position. I had to pound down a double dose of muscle relaxers to get to sleep last night. But it still took almost an hour to fall asleep. Maybe the sleep is not regulating properly? I have been tested for TSH and it is always 3.8. It never changes from test to test. 

[Pistol]

Hi - I only want to tell you that - at least for me - muscle relaxers, Ativan, Benadryl … all that makes things worse. 

[WinterSown]

6 minutes ago, Pistol said:

Hi - I only want to tell you that - at least for me - muscle relaxers, Ativan, Benadryl … all that makes things worse. 

Have you tried low dose (2mg) diazepam? I usually take it for vertigo but my EP has me take it for tremors and spasms. 

 

[blizzard2014]

6 minutes ago, WinterSown said:

Have you tried low dose (2mg) diazepam? I usually take it for vertigo but my EP has me take it for tremors and spasms. 

 

I have read somewhere that after Clonidine is used to lower high BP when standing, they usually switch patients over to Xanax, or benzo's for long term management. Have any of you ever heard of Benzo's evening out standing BP?

[blizzard2014]

18 minutes ago, Pistol said:

Hi - I only want to tell you that - at least for me - muscle relaxers, Ativan, Benadryl … all that makes things worse. 

I take the muscle relaxers when the cramps in my leg get bad from the chronic blood clots. I was having cramps the other night that were causing my foot to spasm and bend down in certain positions. It is awful and pain meds do not help with the cramping. I also have to take a lot of potassium or else it gets really bad. 

[WinterSown]

I wish they had that effect on me, that they would help regulate my BP,  but so far it's a no.

Effect of Diazepam on 24-Hour Blood Pressure and Heart Rate in Healthy Young Volunteers.

Diazepam reduces both arterial blood pressure and muscle sympathetic nerve activity in human.

[blizzard2014]

5 minutes ago, WinterSown said:

I wish they had that effect on me, that they would help regulate my BP,  but so far it's a no.

Effect of Diazepam on 24-Hour Blood Pressure and Heart Rate in Healthy Young Volunteers.

Diazepam reduces both arterial blood pressure and muscle sympathetic nerve activity in human.

Maybe that is a good thing since all of this hype about chronic pain is causing so many doctors to shy away from prescribing Benzo's. I personally don't want anything to do with dependence on Benzo's, but I would take tham occasionally if they helped some. There are some patients on my FB group who were recently displaced from their good doc and new doc's are taking away all of their Xanax to the point of some of them having seizures from withdrawing too abruptly. It's not a class of med you want to mess around with. 

[WinterSown]

1 minute ago, blizzard2014 said:

Maybe that is a good thing since all of this hype about chronic pain is causing so many doctors to shy away from prescribing Benzo's. I personally don't want anything to do with dependence on Benzo's, but I would take tham occasionally if they helped some. There are some patients on my FB group who were recently displaced from their good doc and new doc's are taking away all of their Xanax to the point of some of them having seizures from withdrawing too abruptly. It's not a class of med you want to mess around with. 

It's a controlled substance. When I first prescribed them, along with a prescription for Vestibular PT, I was taking them three or four times a day. Now I'm down to a half pill two or three times a week.  The DPT did an awesome job at correcting most of the vertigo and so I now rarely take them for that anymore but I still keep a full bottle in the cabinet for tremors which I get with blood pooling into my limbs at ludicrous speed, my arms are so patchy with raised veins I look like I've gone to plaid :-)

 

[Brokenlittleteapot]

Benadryl seems to help some of my symptoms 

 

*NOT anymore lmao now it causes hectic heart rhythm 

[yogini]

On 6/3/2018 at 11:25 AM, Brokenlittleteapot said:

Thank you Debbie Rose 💗💞 much appreciated. 

 

Has anyone else had a severe drop in BP when sleeping? Because mine got to 87/48 last night and I felt awful/sleepy all day. And it legit scares me. All the doctors are telling me I won't die but it sure feels like I will , ah Dysautonomia. The joy. Not. Lol

Everyone's BP drops at night, even healthy people.  Check with you doctor but my understanding its that 87/48 during sleep is totally normal, nothing to worry about. 

[Brokenlittleteapot]

Found out that I need a full time walker or wheelchair. I am 24 and can't even make it across the room, two and a half months ago I was walking fine. This is so hard and frustrating, I want to cry but I'm not gonna let this illness win.

[Brokenlittleteapot]

On 5/31/2018 at 1:58 PM, bombsh3ll said:

I have pretty much all the symptoms you describe, sudden onset here as well. I too feel like I am dying on an almost daily basis, but I'm still here after nearly 4 years. Things that gave me temporary relief have been licorice root capsules and diazepam. 

I am so glad you have good doctors. It took nearly 3 years for me to get a formal diagnosis of POTS, and I still have no treatment or specialist care (I live in Scotland, UK).

I hope you manage to find something that makes life more bearable soon. 

B x

 

 

Ugh, bless you sweetheart. I am so sorry there is not proper dysautonomia care in Scotland!! If you ever need someone to vent to, please don't hesitate to message me as I can understand part of your frustration as many doctors called me looney before my diagnosis and sent me away after giving me a very PUBLIC very awful tongue lashing. I even had one doctor humiliate me by telling me "well if youre that bad off, you need to be in a nursing home or a looney bin. You're perfectly healthy so I would choose the ladder."

ALSO EDIT; I had to go to "learning" hospitals hours away or "expiriemental" hospitals to get a proper diagnosis.

[blizzard2014]

4 hours ago, Brokenlittleteapot said:

Ugh, bless you sweetheart. I am so sorry there is not proper dysautonomia care in Scotland!! If you ever need someone to vent to, please don't hesitate to message me as I can understand part of your frustration as many doctors called me looney before my diagnosis and sent me away after giving me a very PUBLIC very awful tongue lashing. I even had one doctor humiliate me by telling me "well if youre that bad off, you need to be in a nursing home or a looney bin. You're perfectly healthy so I would choose the ladder."

ALSO EDIT; I had to go to "learning" hospitals hours away or "expiriemental" hospitals to get a proper diagnosis.

Some doctors are just dense. Normal people do not go to the doctor making up crazy symptoms. I never seen a doc for 12 years until I had my blood clots. Now I have a gang of issues going on and sometimes they try and downplay them even though the tests show the issues. They are telling me an enlarged right heart is common after blood clots and not to worry lol. I don't even have a dysautonomia diagnosis yet. But that doesn't matter to me. I know what's happening and I discovered it on my own. Sometimes you have to just use your doc for scripts. But every once in a while, you find a good doc who will listen to you and figure out what's happening. I hope you feel better soon. Being in a walker has to be rough. But if it helps your condition, then that is all that matters. I'm not in a walker, but I have to be careful as I have a bad leg from DVT's.

[Pistol]

@Brokenlittleteapot I also have had a wheel chair for years and hated it in the beginning. Now it is a blessing to me. I hardly ever leave the house unless for appointments. If something does come up and I have to do something I have my Wheel chair and it makes it possible for me to do anything at all. It can be a tool for your independence, not a sentence to disablility. 

[WinterSown]

6 hours ago, Brokenlittleteapot said:

Found out that I need a full time walker or wheelchair. I am 24 and can't even make it across the room, two and a half months ago I was walking fine. This is so hard and frustrating, I want to cry but I'm not gonna let this illness win.

A doctor told you to go to a walker or chair full time?I am so sorry to hear this.  Did they also prescribe physical therapy for overall strengthening? I can't imagine one without the other.

 

[MomtoGiuliana]

12 hours ago, Brokenlittleteapot said:

Found out that I need a full time walker or wheelchair. I am 24 and can't even make it across the room, two and a half months ago I was walking fine. This is so hard and frustrating, I want to cry but I'm not gonna let this illness win.

Many of us have been this disabled by dysautonomia and recovered to much better function with time and treatment.  there is every reason to remain hopeful that a walker or wheelchair is temporary.  I know how scary it is.  Ive been there too.

 

[Brokenlittleteapot]

Has anyone else had bradycardia at night and tachy during the day? Ugh and my PVCs are so bad sometimes I can barely breathe! They will probably want to change my meds, but this is all just a pain in the ***.

[potsiebarbie]

43 minutes ago, Brokenlittleteapot said:

Has anyone else had bradycardia at night and tachy during the day? Ugh and my PVCs are so bad sometimes I can barely breathe! They will probably want to change my meds, but this is all just a pain in the ***.

Me! And I'm tachy even after bags of iv fluid and hours of laying in the ER. Constant palpitations and horrific sensation of abnormal breathing (can't even describe it). I always feel like doctors are missing something and I'm gonna die. It's scares me to death (no pun intended) especially because I have three small kids. So you are not alone in feeling the way you do. I see a new cardiologist tomorrow so I am hoping for some help.