DizzyPopcorn

I am a certified hypochondriac, so i have some experience with blood pressure taking. 

For the best accurate result, you must always get 4 readings. You discard the first, them average the 3 others. You must wait at least 1 min between each reading

From what you describe, you might just have to buy another machine. Mine doesnt do that at all. It inflates quickly and then deflates back while monitoring the pressure.  I have a relatively expensive omron and it works flawlessly. 

Anxiety and panic will definitely increase your blood pressure. My normal blood pressure is around 118/77, but if i panic (a lot, like a panic attack), i can raise it to a good 160/90. 

Honestly though, why would an ambulance come for a blood pressure of 150? It is nothing to worry about. Not in the short term. Certainly not in an instance of panic. Especially if you have no known other heart related problems. 

Just my 2 cents. I am fairly younger than you are (so my risks of cardiac problems are lower based on statistics) , but im honestly over my fear of blood pressure. Even with headaches and all the symptoms. Worrying about it is going to increase my blood pressure, as well as my heart rate, thereby increasing the risk of what we want to avoid in the first place.  If you get what i mean. 

Can a csf leak occur without any incident or concussion? 

I too have this right now. Very annoying. 

1 hour ago, bombsh3ll said:

I don't have "flare ups", never have. In a way it sounds nice as I like the idea of it being less bad at other times rather than consistent.

I don't tolerate heat well since I became ill, but I don't think that is what is being described here?

@Pistol I hope you feel better soon. 

B xxx

That would be a cause and effect. A flare is when you do your normal everday routine and for some reason it flares up for days/months etc

1 hour ago, Derek1987 said:

I live in west TN. Oct 1st the high is predicted to be 98 degrees. We are breaking records where i live. I am very heat intolerant and looking for some relief but its nowhere in sight.

Its cold here in quebec. Last week i had a temperature of 5 degrees celcius in the morning.

I imagine you have AC at your home? 

44 minutes ago, p8d said:

@DizzyPopcornmy list of meds is horrifying but yes, they help quite a bit.  It has taken 4.5 years to find a decent combination of meds that help but it’s always changing.  Seasons, allergies, life all contribute to flares and sometimes things just stop working.

So frustrating. At least its not the 18th century anymore, so we have meds. I hope you get better. 

4 minutes ago, p8d said:

@Derek1987mitrazapine is in a different class of drugs from Benadryl. Benadryl is an antihistamine and mitrazapine is classed as an antidepressant with some antihistamine properties but it acts differently than tricyclic or SSRI/SRNI antidepressants.  It’s action on the alpha receptors is why I think it helps me sleep, I have hyper POTS.  I also take extended release guanfacine which is an alpha blocker and that helps with all the surges.

With all those meds, are you more "normal" these days? 

Did anyone have those before having POTS? I had an easy startle response all my life to be honest

1 hour ago, Pistol said:

I have a very bad flare right now for the past month and the only thing that is different is that I have allergies. I started Claritin and my POTS is better but still worse than usual. In my case I believe it is because histamine causes vasodilation and my BP is much lower than usual. But it fluctuates really fast , I.e. 140/90 then 80/50, that is when I faint or feel like fainting. As I said, the Claritin gave some relief but it is still bad. Looking back I had a flare every fall and spring for the past 10 years.

Im sorry you're having a hard time pistol . I hope you get well soon! Winter is coming!!! 

2 hours ago, Tstotts said:

Yes, they did give me a glucometer and a pharmacist and home monitoring. But, they seem to be stuck on the Diabetes thing and its frustrating. 

But if your readings are normal after a few weeks, then it's not diabetes and they should move on to something else. 

How long have you been testing yourself? 

2 hours ago, KaciCrochets said:

Insurance is the worst. The only affordable insurance we could get was for doctors in a county that's an hour and a half drive, so for me to see any doctor I spend three hours out of my day driving. My old doctor was 45 minutes away but would have cost an extra $1400 a month to see him this year compared to last year. Two years ago I had a great team of doctors for dysautonomia and EDS, but our old insurance was dropping that network and all the other insurance companies covering them were insanely unaffordable. The US health "care" system is a dumpster fire. Meanwhile, I was referred to neurology but after two weeks they are still triaging so I haven't even gotten scheduled for an appointment yet, and it will be at least three months to get in after they call to schedule. None of the doctors in my network even treat POTS, so this may all be for nothing anyway. 

This makes my blood boil. Without going into politics, why is healthcare not an important part of elections? Surely if its so trash and let Americans die due to lack of cares, its an emergency needing funds asap to correct the situation???? Is no one up in arms doing protests over this? 

2 hours ago, Derek1987 said:

I bet. Yall have free healthcare correct? I have thousands of dollars of debt between my wife and i of medical bills. Need to move to canada lol. The cold would be too bad on her bones though. 

It depends on the province, but generally speaking, everyone has access to free healthcare across canada. Quebec is vastly superior in what they cover due to additional policies on top of what canada suggest/covers. 

I have private insurance on top of that, so my situation is different. 

My insurance work like this : They have no right to contest what i am being prescribed by my MD, be it medication or tests. They have categories that are covered by x %. For meds, its usually 100% for any generic and 70% for originals. No question asked, no co pay, and unlimited funds (no maximum ceiling). So even if im on a very expensive med, and even if its not approved for my condition, they will not contest it. My insurance company DO NOT have access to my medical records. 

For tests, its usually free with our public healthcare. But if i want to have the test done faster, i can pay out of pocket and they reimburse 75% (with my private insurance), no matter what kind of test is required. An MRI, for example, is around 600$ CAN when going private (1 week wait time for scheduling + results). My insurance pays 75%, so i end up paying 150$. Very reasonable. 

Now, its not all bells and whistles. Wait time in any emergency room on a normal day is 10-20 hours if you're not dying (read : if you dont piss blood you're fine, just wait). Public testing, for example, have enormus waiting times. MRI have wait times of 3 months up to 2 years depending on your region.

I pay 40% of my income in taxes, on top of having the highest sale taxes of any province in canada. 

So its give and take. Nothing is free. I still prefer my system to what you guys have in the states. 

4 minutes ago, Derek1987 said:

No. Our healthcare system is trash too. You have to check with a doctor if they accept your insurance. 

Pardon me, but what the ****. 

Im glad to live in quebec. 

34 minutes ago, gertie said:

Has anyone developed CKD?  I don't think Dysautonomia causes it but my blood test now show CKD.   I've never drank alcohol, no sodas, coffee, eat low protein, no medication abuse.  I'm just curious if any of you have experienced this?  Doctor did mention it might be caused from BP going from high to so low it causes fainting.  thanks.

What showed on your blood tests that suggested it was kidney failure? Just being curious here

43 minutes ago, Derek1987 said:

Yeah it was ruled out. I was supposed to see an adrenal gland specialist anyway. Missed 2 appointments because i was having a really hard days. It was so hard to reschedule with them. Finally got ahold of them this week and they dont accept my new insurance lol. So i told my primary care doctor to find me another who accepts my insurance. I dont know what they can even do. My cardiologist said the beta blocker is really the only thing that can be done about it. Idk. 

Wait, so in the usa, your insurance isn't accepted everywhere as long as you have a, referral? 

7 minutes ago, Derek1987 said:

Before i had xanax, they gave me hydroxyzine after a hospital trip. It did 0 for me. Even took extra and felt nothing. It was still a dose that could be taken. Still felt nothing. Glad it works for you. 

 

Refresh my memory if you don't mind, but they did rule you out for a pheo in your case right? 

16 hours ago, bamagirl said:

Does anyone else seem to have flares with this crap? Mine include burning feet, burning tongue, severe vertigo, anxiety and feeling of sensory overload, joint pain, tachycardia then bradycardia, blurred vision, major fatigue. Seems to happen all at once and then I'm bedridden until it passes. It lasts about 2 months. The worst part is the feeling that my nervous system is about to explode. I take Vistaril and it helps some. Anyone else go through this and if so what helps? Sending hugs to everyone!

Hello Bamagirl! 

Unfortunately yes, many people have flares on these forums. While im undiagnosed, i think im in a flare right now, as my symptoms are worst than they used to be 3 months ago. 

Hope it gets better for you :)! Keep it up

5 hours ago, Derek1987 said:

Before i completely broke down, i remember playing sports games on my xbox. Every time i had a super close game, i felt really bad and had to quit. I was angry because i was just like i want to enjoy myself. I forced myself to sleep to escape the suffering. At the time i thought it had something to do with my blood pressure. But in the back of my head, i remembered i had fainted once already at that particular time and i didnt accept that as normal. Im glad im through with those stages of whats wrong with me? Is there something wrong with me? 

I remember this feeling hitting me again when i was putting a computer desk together. I had to stop and tell the wife i need the room alone to escape.

Then recently i watched 2 action movies back to back. That really screwed me up. I was getting these jump scare feelings and what felt like some shock or punch to the gut. This time i had xanax. Took my max dose and requested to be left alone to sleep it off.

Trash disease.

 

You got that right. Trash disease explains it very well. 

1 hour ago, KaciCrochets said:

A hyperactive startle response is a huge reason for my awful insomnia. Every little noise sets off an explosion in my head, and a surge of adrenaline. I tried ear plugs but they hurt my ear canals and don't stay in properly, so I've resorted to half a cotton ball in each ear and a beanbag stuffed animal over one ear (the other ear is in the pillow) when it gets bad.

What about noise cancelling earphones? 

On 9/13/2019 at 9:57 PM, Tstotts said:

I have severe symtoms  when I get down on the ground and bend forward and have all of my life. I tachycardia, tunnel vision and severe coathanger pain in my neck shoulders. I havent been diagnosed yet as the VA doesnt seem to want to figure out what is wrong with me. They think Diabetes out of control is the cause even though I have had symptoms as long as I remember. I also get motion sickness very easily. So frustrating. 

Did they give you a glucometer so you could test yourself at home at least? 

5 hours ago, Derek1987 said:

Did he finally get it? My wife told me a story of someone she knew who had a serious illness. By the time they got approved and got the approval letter, the person was dead. 

I think that's their job actually (denying people). Its sad. 

4 hours ago, Jodi Parker said:

Hi, I definitely do exist. I wrote the book POTS, Together We Stand. I got remarried three years ago and now my last name is Parker.  I also wrote a chapter about my experience at the POTS Treatment Center in my book, becuase my daughter, as well as many other patients I sent there, had a great experinece as well as fantastic results. I never said that Dr. K. promised to cure POTS: as we all know, there is no such thing to date. (unfortunately) I was merely answering a question that was on the forum becuase the question was asked by one of your members. She asked if anyone had personal experience at the Treatment Center and what their opinion was of it was. I thought I was being helpful. Biofeedback is recommended by many POTS specialists as well as hospitals that treat POTS. Dr. Blaire Grubb, one of the most well known of POTS doctors recommends it for certain types of POTS and biofeedback is part of the POTS protocoal at both Mayo Clinic and Cleveland Clinic, so there must be something to it. Additionally, I am not trying to advertise, as I never even mentioned the book that I authored, because I did not want to slant anyone's opinion.  I have done a lot to raise awareness for this syndrome and for this community, and would never go out of my way to mislead anyone. Of course, not all treatment options will help all patients with POTS, as each case is unique, with its own challenges. I simply was saying that the program at the POTS Treatment Center helped my daughter, as well as many others that I sent there, to be more functional and less symptomatic, not cured. 

I apologize for my stance on your message. I didn't mean to offend in any way or claim that your daughter doesn't exist. 

It's obvious, based on the details that you gave us, that it really helped your daughter. I am very happy for you and hope that your daughter stays healthy and able to live a normal life!

I hope i will be able to follow her footsteps soon with my own problems. A 95% recovery would be the best gift I'd ever be able to get in my life. 

I would also like to point out that this is coming from a first post user as well. I'm not saying Jodi doesn't exist, nor that her mother is lying about her experience, but I suggest to take it with a grain of salt regardless. If their "cure" (read treatment/regiment) was working that much more than other autonomic centers, they would have published publicly studies about it, in my opinion.

But im glad it worked for Jodi's daughter and hope her health stays that way forever!

24 minutes ago, Derek1987 said:

Insane. This probably makes people homeless. The ones who are truly sick. Im glad you finally got what was already yours and you were able to maintain yourself.

I'm sorry you got denied and hope you get the right judgement. I know your story and you truly deserve disability Derek.

14 hours ago, Pistol said:

@RecipeForDisaster - yes. I believe it is. Who would not b cranky after a bad nights of sleep?

I don't know. I used to be sleep deprived in college sometimes when i had deadlines (classic college student) and even then, my days were ok. Not great, but i was still human and not yelling at ppl etc. 

Now? Thats a different story