How to get blood flow to brain?

[CallieAndToby]

Hi everyone, I've been gone b/c of multiple seizures a day and in and out of ER. Now I got a good ER doctor that at least knew what pots was and by accident we figured out that tourniquets to my arms and legs brought blood flow back to my brain, at which point I literally woke up, but otherwise I can't even sit up. I'm completely bed bound and scared to sleep b/c I keep waking up gasping for air and feeling like I'm passing out. Every doctor has dropped me except my PCP and he has referred me via STAT to UAB. There are other problems, I have the blood cancer and my platelets are rising. My testosterone levels just came back majorly majorly abnormally high which could be adrenal hyperplasia or pcos. It's all a mystery but I'm waiting to hear from UAB. I'm not sleeping b/c I'm frightened. Nobody is giving me saline iv's. I drink water with salt tablets but it's getting me up to the bathroom constantly at which point I'm fainting, I really need to stay supine in bed. And drinking a lot causes my bladder to flare which then in turns keeps me from resting and sleeping. When I lose blood flow to brain, I have slurred speech, dragging legs and barely able to walk (they even thought it could be MS). My PCP referred to UAB autonomic clinic yesterday, does anyone know the turn around? I won't be on here much as it takes a lot of effort to type things and read, but my caretaker will probably sign up and chat with you guys. I've tried sleeping with legs propped but I can't sleep, my head starts hurting very badly and I feel weird and unable to sleep. I only have a very caring psychologist (therapist) and my PCP!!!! 

[Pistol]

😵@CallieAndToby22 - I am so so sorry you are that unwell!!!!!  As you know I too suffer from seizures due to loosing circulation to the brain ( for me it is caused by extreme vasoconstriction from too much adrenaline being dumped ). So I am very familiar with what these seizures are like - and they are scary 😬. The only things that have helped me with them were Diltiazem, a calcium channel blocker that dilates the blood vessels, and up to 3 liters of IV fluids a week ( they keep the vessels open and stop the urge of the ANS to overproduce adrenaline ). 

Having said that - you have so many things going on that I am not sure if that would even help you. Any of the issues you are struggling with can potentially worsen your POTS, so it is beyond my knowledge to even guess. I am glad your PCP referred you, and I hope they will get to the bottom of things and find a treatment. Hopefully you will not have to wait too long for an appointment. Until then - hang in there, keep your head up and be positive! When at my worst I thought I would die like this, unable to get out of bed without seizing. But I got better - so there is hope!!!!!! Best wishes!!!

[dancer65]

Just sending you best wishes and I hope you can get some help 💗

[CallieAndToby]

Well nobody Is helping me. Unfortunately the small things I can do myself aren't helping. All my doctors have dropped me except PCP b/c it's complex. It started after I took a cancer medication that suppressed my immune system so I'm worried about an infection that popped up that was dormant. There is nobody is my city that knows anything. The ER doctors could've helped months ago but they told me I was "stressed" over the pandemic, in reality it's the severe autonomic dysfunction. According to my tilt table in 2010 (long time ago), the doctor didn't know what it was, does not fit POTS or hyper POTS. 

[Perfson]

I have few thoughts about it. But im not a doctor or anything, im just learning stuff on internet and i couldn't fix my own cerebral blood flow problem yet.

1. Weird that you go to toilet lots of times, considering you take a lot of salt. Maybe you really drink too much water, if not, then maybe salt can't retain in your body. Fludrocortisone can make you retain lots of salt. Not sure if it would help in your case. 

2. I know that air hunger is common symptom of POTS, but i didn't know that you can experience it while laying down. Probably the case in hyperpots. Though, waking up at night cuz of air hunger is common symptom of sleep apnea (and OBS). If this air hunger occurs when you are not sleeping, but still laying down, then sleep apnea is just the result of severe POTS, in my opinion. 

3. Im curious why do your head "starts hurting very badly" when you are laying down. Once i read conversation on a forum about "reverse POTS", which happen in some people when they are laying down. It's called Intracranial Hypertension, when blood is having troubles moving back from your head to your heart. People in that forum thread suggested to use ice (cold) pack on your forehead, or under the neck. I personally sometime experience something like that, and not sure if cold helps me with this personally. Obviously it should be something comfortably cold, and neck is quite dangerous place to cool down too much. Another though that if it's not intracranial hypertension, then maybe it's Craniocervical Instability (neck problem which can be a reason of POTS or IH), and when you are laying down your instability getting worse. But it's my own theory. 

4. If you don't meet the criteria for POTS, maybe you have Hypocapnic Cerebral Hypoperfusion. Which is another kind of orthostatic intolerance. 

Edited January 26, 2021 by Perfson
Added another thought

[CallieAndToby]

3 hours ago, Perfson said:

I have few thoughts about it. But im not a doctor or anything, im just learning stuff on internet and i couldn't fix my own cerebral blood flow problem yet.

1. Weird that you go to toilet lots of times, considering you take a lot of salt. Maybe you really drink too much water, if not, then maybe salt can't retain in your body. Fludrocortisone can make you retain lots of salt. Not sure if it would help in your case. 

2. I know that air hunger is common symptom of POTS, but i didn't know that you can experience it while laying down. Probably the case in hyperpots. Though, waking up at night cuz of air hunger is common symptom of sleep apnea (and OBS). If this air hunger occurs when you are not sleeping, but still laying down, then sleep apnea is just the result of severe POTS, in my opinion. 

3. Im curious why do your head "starts hurting very badly" when you are laying down. Once i read conversation on a forum about "reverse POTS", which happen in some people when they are laying down. It's called Intracranial Hypertension, when blood is having troubles moving back from your head to your heart. People in that forum thread suggested to use ice (cold) pack on your forehead, or under the neck. I personally sometime experience something like that, and not sure if cold helps me with this personally. Obviously it should be something comfortably cold, and neck is quite dangerous place to cool down too much. Another though that if it's not intracranial hypertension, then maybe it's Craniocervical Instability (neck problem which can be a reason of POTS or IH), and when you are laying down your instability getting worse. But it's my own theory. 

4. If you don't meet the criteria for POTS, maybe you have Hypocapnic Cerebral Hypoperfusion. Which is another kind of orthostatic intolerance. 

Thank you. Great response!!!! Yes I'm not retaining fluid! Goes straight through me; I've had horrible urinary frequency since I was 6 years old!!!!!!! They called it "overactive bladder" then IC, but it's connected to all of this. Right now I've been getting saline iv's and the water is all collecting in my stomach and feet. Again, not getting blood circulation where I need it. I have been misdiagnosed my entire life. These are some great thoughts. 

[CallieAndToby]

7 hours ago, CallieAndToby22 said:

Thank you. Great response!!!! Yes I'm not retaining fluid! Goes straight through me; I've had horrible urinary frequency since I was 6 years old!!!!!!! They called it "overactive bladder" then IC, but it's connected to all of this. Right now I've been getting saline iv's and the water is all collecting in my stomach and feet. Again, not getting blood circulation where I need it. I have been misdiagnosed my entire life. These are some great thoughts. 

I do feel much better laying down. Sitting or standing leads to palpitations and extreme heart pounding, fainting, seizures. Thanks again great thoughts. 

[CallieAndToby]

Just so it might help someone. I found an article on EDS and dysautonomia based on your suggestions. https://www.nyit.edu/files/events/content/171208_EDSSymposium_Stiles-Dysautonomia.pdf

On 1/26/2021 at 8:56 AM, Perfson said:

I have few thoughts about it. But im not a doctor or anything, im just learning stuff on internet and i couldn't fix my own cerebral blood flow problem yet.

1. Weird that you go to toilet lots of times, considering you take a lot of salt. Maybe you really drink too much water, if not, then maybe salt can't retain in your body. Fludrocortisone can make you retain lots of salt. Not sure if it would help in your case. 

2. I know that air hunger is common symptom of POTS, but i didn't know that you can experience it while laying down. Probably the case in hyperpots. Though, waking up at night cuz of air hunger is common symptom of sleep apnea (and OBS). If this air hunger occurs when you are not sleeping, but still laying down, then sleep apnea is just the result of severe POTS, in my opinion. 

3. Im curious why do your head "starts hurting very badly" when you are laying down. Once i read conversation on a forum about "reverse POTS", which happen in some people when they are laying down. It's called Intracranial Hypertension, when blood is having troubles moving back from your head to your heart. People in that forum thread suggested to use ice (cold) pack on your forehead, or under the neck. I personally sometime experience something like that, and not sure if cold helps me with this personally. Obviously it should be something comfortably cold, and neck is quite dangerous place to cool down too much. Another though that if it's not intracranial hypertension, then maybe it's Craniocervical Instability (neck problem which can be a reason of POTS or IH), and when you are laying down your instability getting worse. But it's my own theory. 

4. If you don't meet the criteria for POTS, maybe you have Hypocapnic Cerebral Hypoperfusion. Which is another kind of orthostatic intolerance. 

 

[Ashc]

Not sure I'd be able to help, but Hugs and prayers for you! Stay strong.