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down with a bang; bp 196/142. pulse 175!


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I'm so sorry to be disappointing you all after yesterday's great news. I felt on top of the world then! But I woke up today and felt like I had slept on a bed of nails. I ache everywhere.

I took my blood pressure this morning and it was back to 196/142 and my pulse was 175. :D

I rang my GP and simply got told to go to ER because they simply cannot treat me anymore. :D

But that's pointless- there are no autonomic specialists here and they don't know what to do either. :D

My flight to Scotland to see my friends is booked for tomorrow and now I don't know what to do--I would have a rotten time being all achy like this. :D But worse than that is my mum's attitude- dithering between concern and "ha! I told you so!" looks and comments. :D She's lectured me on booking yet another flight I can't manage....to be fair, I've had this happen a few times, where I'm too ill to make the flights and I lose the tickets, esp as the tickets are usually non-refundable. But still how do these comments help? It was MY money that's gone to POT (no pun intended, well, maybe a little one! :D ) and does she think I don't KNOW it's a waste? :D

So: would you go if you were me, armed with painkillers?

*Stay at home with your mum, and cry all weekend for the fun you should be having? :D

*go to the hospital? :D

*just sit and cry like I am now? :D

*or something else?

any suggestions gratefully received.

Do you know, I'm starting to think the classical theory of hubris and nemesis is true. Atleast it is for me. EVerytime I have one good day, or something good happens, I *always* pay for it and then some! :D

Seriously hacked off.

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What would I do?

I'd stay home and cry ... beat myself up for being so sick and not having a life ... feel miserable about how many other lives I am making worse just by being around me ... become convinced that I would never get any better, that I'll never have another good day ....

Then if I was really lucky I'd muster the strength to turn on my PC and log into DINET and write a tearfilled note about how awful I felt ....

And within moments I would see the POTS poets and prayers of all my extended family reaching out to me through the ether. Penetrating the heavy fog and frustration I was feeling ... reaching down, down, down to the bottom of my POTShole to give me a gentle hug.

Saying "I know how you feel, I wish there was more I could do, know that my good thoughts are with you"

EM

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Guest Mary from OH

GO TO ER RIGHT NOW!!

You could have a stroke!!

You probably won't have to stay?!

Just go and please let us know what they said!!

Take care!!!

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Persephone,

If your BP and HR remain continuously that high, I would also go to the ER. Even if they aren't autonomic specialists, they could still monitor you and give you something to bring down your BP and HR. Many of us on this board resist going ot the ER, but generally we do not have such a high combination of BP and HR. Are you on any medications right now?

I am really sorry you are having so many ups and downs. I think many of us are in the same boat. I have become so cynical, that whenever I have a good day (or a good few days), I am always waiting for the next bad day to arrive, which inevitably it does :D

As for your trip, I personally think it's better to be safe than sorry. Here in the US, the airlines let you reschedule trips, especially if you have a doctor's note (they may charge a fee for this). So maybe you could move your trip to another weekend when you are feeling better? It could give you something to look forward to.

Feel better soon,

Rita

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GO TO ER RIGHT NOW!!

You could have a stroke!!

You probably won't have to stay?!

Just go and please let us know what they said!!

Take care!!!

I think that is totally out of order what you just said, you know how worried people can get saying stuff like that. Anyone knows that with a continuos HR of above 170 is a bit worrying but theres no need to go and say that the person could have a Stroke, let the doctors tell them that.

Im sorry if im being a bit rude, but if you would have told me that it would have made my symtoms MUUCHH worse.

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Guest Mary from OH

Guvna-

It's not the HR that you worry about. It's the blood pressure. And no, I don't worry about telling someone who is slurring their speech and is having difficulty speaking and has a blood pressure with a diastolic number consistently over 100 who is a POTS patient and normally has LOW blood pressure. THESE ARE VERY SERIOUS SIGNS. Her life is in danger. Minutes are precious. Before you criticize someone else. You need to medically know what you are talking about!!! Look up any medical website for the warning signs of a stroke. Thank you.

And, certain medications can only be used within certain time limits of the presentation of symptoms. Strokes are a serious thing. You need to be informed. And if you don't have the facts. Please don't criticize someone who does.

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Oopsy, the fighting won't help either. I do agree if your BP is that high you need to be seen, if only to get some IV or sublingual meds that can bring it down quickly, but not so quickly that it dumps, as it seems wont to do in our cases. Most airlines won't let you fly with hypertension like that anyway, as even though the cabins are pressurized (sp) they don't want the responsibility of someone getting sick, just like like women over 35 weeks pregnant can't fly. If your pressure is staying this high, (you must have quite a headache) you really do need to be seen. Trust me, I know how hard this is, we all do. But you really need to get the bp down and evaluated. If your bp is that high it would negligence for them to turn you away. Have you been tested for pheochromocytoma? It's typically the first thing they rule out when you have wild swings like this, but just wondering. morgan get thee to a doctor or hospital

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Guest Mary from OH

Morgan-

I'm sorry. Just to clarify. My post was not intended to be argumentative. I am VERY concerned about Persephone's health. While I did not appreciate being attacked for giving sound medical advice, THAT wasn't the point. I wanted to make sure everyone knew the warning signs for a stroke. THIS is serious stuff!! I have intractible migraines and have to be on the look-out for signs of strokes on a daily basis. They thought I was having a stroke back in Nov. Several of my Migraine friends have had strokes and 2 have have 2. One even died from a migrainous stroke. This is serious business. I did not want anyone on the Forum to be misled. My post was definately not intended to "fight". I want Persephone to be safe and not in danger. Plain and simple. Thanks for understanding where I was coming from!!

:D:D

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I agree that this is a really high blood pressure. If it doesn't go down quickly, I would definitely recommend you get medical help, to get it under control. Are you on a beta blocker? That might help with these upward swings? I had bp almost this high at times post partum--it would usually come on and then subside very quickly, before I was medically evaluated. It is very important to get this bp under control, POTS or not. I am sure there is some medication that will help without worsening your POTS symptoms.

Longer term--You may find it helpful to learn some biofeedback or other mind/body techniques to take the edge off high bp when it comes on. When I had these spikes I would get emotional/scared and then it would go even higher.

So so sorry you are going through this. I hope you find some treatments soon that will help.

Katherine

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Mary, I do absolutely know where you are coming from! My doctor told me I was going die from a stroke and I have to be very vigilant about symptoms. I felt your answer was very much out of concern and nothing else. James, I understand you are having a great deal of problems yourself right now, however, as a rule we always refer people that post these types of things to hospitals or doctors. It is not to scare people, well maybe just enough to get them to do something, but for pressures like that stroke IS a very real possibility and persephone needs to do something about it. I am talking to you too persephone! We can not diagnose, not even Karyn, who's a doctor, over the net, but we certainly, by this time, know when someone should be seen right away and sometimes it takes a scary budge for someone who's still reeling from a bad experience. I just told my doctor that the next time I go to the hospital I will be stiff, cold, and very very dead. I was very upset and am very resistant to it now because of my experience last week end, however my family would be devastated to find me really bad because I was too stubborn to do what I needed to do. It sounds as though your panic issues need to be addressed. Do you see someone, a therapist, or are you on anything for it? Everyone here has all the same emotions at one time or another, anxiety, frustration, hopelessness, good days, bad days. But unless we help ourselves, no one else can help us either. So both of you, thee to doctors! morgan

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Persephone, I, too, am quite concerned about your blood pressure being that high, AND the fact that you're slurring your words periodically. My mom's blood pressure wasn't nearly that high a few weeks ago, but it was high enough. When I called her doctor's office, her doctor was out and would be for two weeks, so they told me to get Mom to the ER or community medical center right away as she was in danger of a stroke. Mary from Ohio was definitely correct in saying that. I told my mom that the doctor said she could have a stroke, not to frighten her but to get her to take her condition seriously and do something about it. Not that you, Persephone, aren't taking your condition seriously and don't want to do something about it--I understand your hesitancy to go to the ER. Believe me, I hate those places even more than I hate the smell of liver, and that's pretty bad. But, I do think your high bp and other symptoms need to override your fear of bad treatment right now. You need to get that bp down to a safe level. Are you on a bb? My mom was put on Toprol. I take Cardizem CD, a calcium channel blocker. Mom's bp came down within two days of beginning the Toprol. Please, keep us informed. We're all very concerned. As far as the trip, I'm sorry, but it wouldn't be good to go flying with a bp that high. POTS patients don't fly well to begin with, even when not experiencing symptoms at the time. Having a bp that high is really just inviting more problems. I am soooo sorry you're going through this, especially after being so happy yesterday with such good news. Please keep us posted.

Linda

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Hi

I don't like to scare patients, but scaring you into action might save your life. Your elevated BP is an EMERGENCY, and your own doctor told you to go to the ER. Sometimes a patient will not do the right thing until they know all the consequences (yes, scary consequences) of not doing the right thing. I have already told you that you could have a stroke. Strokes can kill. Other bad things can happen too.

I bet the airline would refund your ticket or give you a voucher for another, later ticket if you have a note from a doctor.

Sorry to be so blunt. However, I think your life is worth me possibly offending you. PLease, stop wasting time on your computer reading messages like this one, and GO to the ER.

Karyn

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OK ALL OF YOU...

If your blood pressure gets up way higher than normal (we all know what highs and lows we can manage) and stays up and if your heart rate ever goes over 130-140 and stays there GO TO THE EMERGENCY ROOM.

I dont care who I piss off.... I am an experienced ER Nurse...... I have seen strokes first hand. Yes you CAN die. But even worse, you can wind up in a nursing home half paralyzed with someone else feeding you and wiping you butt for the rest of your life..

Persephone, if your BP is still high and your heart rate is actually 175 get your *** to the ER right now. I know your sick of doctors, I know you dont want to go sit in an ER for hours to have them not understand your underlying condition, but high bp and high heart rates are something that they can help with in the ER. They are not going to cure you but they can keep you from stroking from high blood pressure and they can keep you from having cardiac arrest from a heart rate of 175. Simple controlable things (on a short term basis for us).

For Gods Sakes Hon Go To the ER

Janine

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Hi everyone,

I've been in touch with the nice cardiologist here in Bristol and he says I need to monitor my BP every couple of hours so we can talk again Monday, after having a series of rehular BP and pulse readings. he was the only person I could get through to, in the end. He says we'll need to see what happens next week- if I'm still so bad it'll need to be addressed.

Just hearing the reassurance brought me down--the fact he didn't thoink it was urgent/lifethreatening etc etc. I think the adrenaline was making my readings even higher- you all know how it gets! :D I feel so much better now, and my bp is back down to 130/80. My pulse is stil running a bit fast at 110 sitting, but I feel a lot calmer, which is half the battle won, as I'm sure you can all appreciate.

So...thanks for the concern, and sorry about making you all worry!I was worried too! But I feel a lot better now. Thanks for your help, guys :D You are all awesome :D Just sorry for caausing stress/worry :D

*APOLOGETIC HUGS*

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Persephone, I have been worried about you all day. I'm soooo glad you are doing better!! Please keep us posted on your progress as I know how, with POTS, we can all go up and down at a moment's notice. You have too much to celebrate right now to be so down!!!

Hang in there.

Linda

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Guest Mary from OH

Persephone-

You gave us all quite a scare!!! I'm happy you're feeling better!! But HBP is nothing to mess around with. I know hospitals are pains in the butt, but it's better going and getting things checked out with readings like that then ending up stroked out or worse!! Please don't keep us hanging so long!! We love you!!! Go get a check up on Monday!! Have a wonderful Mother's Day and take care!!

Love you!! It was a close call.

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  • 3 weeks later...

Hi, just thought I'd add something to this-- after seeing a neurologist briefly, he suggests that familial hemiplegic migraine might be to blame for these weird episodes I had--the slurring of speech, numbness down one side, being spaced etc. So it wasn't as bad as everyone (myself, first and foremost) thought!

I thought I'd post this little conclusion as it might help someone else with the same symptoms?

I'd never heard of this type of migraine, but the neurologist seems pretty convinced. It can make people ocmpletely lose consciousness, or feeling down one side of the body.

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Guest Mary from OH

Yep!! My cousin has them!! They can be REALLY scary!! B)

Did they start you on preventative meds for migraines? There are special ones you need to be on for that type of migraine. I am glad you got some answers. Not so glad to welcome you to the world of migraines, especially that type!! Take care of yourself and thanks for letting us know your outcome!!

:)

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