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Hypertension - how did this happen?


Dawg Tired
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I have been fighting NCS since 2003, dx by TTT. The last 5 weeks or so I started developing headaches when I was laying down. At first I thought it was my sleep apnea - couldn't use a C-PAP - caused extreme headaches; had surgery for it in 2000 but didn't help. Anyway, I was convinced at first that was the problem but then I laid across the bed one day to talk to Rick while he was working on his computer and ZING! Here came the headache. I got my cuff and stethoscope and checked my bp and sure enough, it was 160/110! I had noticed that with the nighttime headaches I could get up and sit upright for a while and it would go away.

So... My GP was in Venezuela on a mission trip and I went to the "on-call" doctor. He took me off my estradiol since that was the only daily med I was taking - told me that since my bp was fine there in the office I had nothing to worry about, and ordered a CT scan of my head. He was a bit miffed because I couldn't have an MRI. Pacemaker, ya know... Didn't want to address the bp issue at all - looked for the cause of the headache elsewhere even though I had brought in a list of readings. Oh well, we've ALL been there, done that

Fortunately, my GP came back, I already had an appointment, he looked me over, put me back on the estradiol, and gave me some lisinopril. I haven't had it filled yet due to money issues but I will be getting it today. Hopefully, I will be able to lie down again. It has been SO frustrating only being able to lie down for 20-30 minutes at a time. Has anyone else had this issue? I only did in 2002 when they tried me on florineff.

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Hi Gayla,

Just today I had a bp of 228/163!!! This is my highest ever- and it was AFTER taking betablockers. I have had chest pain today and a pulse of 37 at one point- but like my mum said, what's the point in going to the hospital- they just do nothing

So here I am- at 1.30 am (UK time) unable to sleep cos my chest is hurting so much and I feel so off.

I should be somewhere where I can be watched- but if I go, no one does any watching anyhow. Because in the UK, it seems, no body really cares. At all.

I don't know if it could just be the autonomics going off on one in both of us- my usual bp is 90/60 ish. I don't smoke, drink or eat any animal products, so I know I can't be hypertensive cos of lifestyle.

I guess we're just weirdos! Or POTSy! Or both! Big hugs

P x x

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Gayla, I don't know what to say other than I have very high bp off of meds too. I have both high and low, and not much in the middle. I was getting terrible afternoon and early evening headaches. Cozaar works great for me--remember that dysautomia is a dysregulation, not just low bp.

Nina

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gayla -

i don't have experience with the meds you're referencing but have had problems with high BP at times. mine is most often low/normal but anywhere from super low to super high at a given time. but when it's super high i feel HORRIBLE so can relate to that...pounding headache, shaky, sweaty...some of the same things as when my BP is super low but i can usually tell the difference between the type of headache. my "high BP headache" is generally pounding in the front of my head whereas my "low BP headache" tends to be more in the back and not pounding but dull. how this is of any use to anyone else i'm not sure, but just how my body tends to react to the extremes:-) i also often have high BP spikes - briefly - right after i black out, that is right after my BP has taken a complete nose dive; it's as if my body is trying to bring up the BP and overdoes it.

oddly enough though when i get the super high BP i don't feel any better sitting/standing up. my body still wants to lay down. at least it's consistant in that regard?! ^_^

i hope you're feeling better soon...

:) melissa

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pers -

i don't mean to be a nag, but that BP is way high when your "normal" BP is often double digits. i know you've been through the mill with docs/clinics/hospitals but i don't think you've had that sort of BP before? i don't want to overreact or play doctor, but you really do need to get that checked out. and sooner rather than later...

hang in there,

melissa

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My bp headaches occur when I am up, the opposite of you. They squeeze and make even my sinus' hurt although they come from the back of my head. They are relieved very quickly when I lie down....my bp is never ever low. It only goes up. My baseline is around 160/90. Mine started out up and down and then just gradually stayed up. So don't know what to tell you. But do understand....morgansheadhurtsalot

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I get BP spikes from time to time. It is awful, I know! I was first getting them due to florinef, which I no longer take. Now when I get them, I cut down on salt and/or stop wearing compression hose. It usually goes away in a few days. Hope your meds work and that you feel better soon!

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Thanks, all of you! I am just now getting back on. My regular GP came back and I had an appointment already set up with him and as soon as he saw me he said we had to get the high bp treated right away. What a blessing! He gave me a script for 20 mg zestril. It was 3 days before we had the money to get it but as soon as I did I took it. It made me very tired and a bit shaky. I went to bed - no headache! It was wonderful! I slept for almost 14 hours then I took the second one today; the side effects were not noticeable and it seems to be working well. I feel better with no headache - just tired, but hey, what's new??

Thanks again to all of you for answering me and letting me know I'm not alone in all this!

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gayla -

so glad that you're feeling better & were able to get some good sleep. if you bottle it up & sell it (the sleep) i'm sure you'd have a few takers!

:) melissa

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