Bp 83/74----pulse 74

[Maxine]

HI-----I feel like a train wreck!

BP standing fell to 83/74-----pulse pressure is only 9! Saturday I decided to take my BP sitting and standing. BPs sitting average 109/78. Sitting, my diastolic is usually around 80. This has been since I've had increasing pain in lower cranium.

I do have an appointment to see Dr. Grubb. I was at the hospital with my brother in law Thursday while he was having his chemo done for non-hodgekins lymphoma. I decided to hang out, rater then try to go in and out of the hospital in the heat. Temps have been running in the lower 90s here.

I saw Dr. Grubb walk through the main floor while I was on the phone talking to my sister in law. I thought I should go to his office and try to get in to see him. They happend to have an opening in August, so I grabbed it. I'm due for my yearly check up anyway, so I sually check in about this time.

It's been TERRIBLE! I am having HOT FLASHES on top of this! They are horrible. When I had them before they seemed milder. My gyno doesn't care.....she just didn't care, nor did my endo. I had really low catecholamines also, and the endo was dismissive.

I got my dictation notes back from the surgeon, and they were confusing. I have instability at the cervical cranial junction (CCI), and I basically he is saying I have an angulation problem---AKA---instability. He is very knowledgeable about CCI, and a lot of other spine and brain tumor issues. His Bio is long and impressive. I know the sitting MRI said there's a mass/pannus growth on odontoid bone (which no oter MRI ever reported before---even though two NSGs told me I had this in addition to the Doc from NIH study. Other problems of disk herniations/and nerve root compresssion in this area also. The vertebral artery is not visiable in the brain which could be from the pressure from the pannus growth.

My heart has been doing flips flops more, and on Saturday I had kind of a big episode. When I took my BPs stading that night, the BP fell to 83/65----pulse fell to 53! WHAT!? My BP was all over the place standing, but it never got high. It stayed below 100/something, but dipped on and off.

My feet are purple, and hands swell and gorge with blood worse then they ever have.

I'm at a loss on why I have taken a sudden change in dysautonomia symptoms. I know Dr. Grubb said menopause can do this, but MAN----how bad?!

I have also been worse since the flexation/extension CT done in Maryland. I'm am so limited! I dare not go out in the heat at ALL!

Hopefully Dr. Grubb can help until I get more answers from the surgeon. I know the surgeon has made another dictation, and is still acessing my case. He's also testing my for tethered cord, and wants me to do a urodynamics test. I think he's on the fence about tethered cord, but it looks like he's investigating the CCI further. This vertebral artery missing on the left side of my brain has to have something to do with the pannus growth. Why would it show in my neck, but not in my BRAIN MRAs. This has been on TWO MRAs! NIH confirmed it, and even a local neurologist.

Thanks for reading! I still feel like I'm smelling smoke, and I can't go to the bathroom-----(bowels are very slow)---worse then before.

Maxine :0)

[babettess]

Maxine,

Just wanted to let you know I'm thinking about you and hope you start feeling better soon.

Babette

[dianne.fraser]

Maxine

I'm so sorry you're so unwell. I have absolutely no idea how you managed to be upright with a BP of 83/74 - I slump over when my BP is that low.

I'm getting hot flashes too right now, and I think I've finally hit menopause - its hideous.

I'm hoping that Dr Grubb will help you. Please let us know how you go.

With best wishes

Dianne

[tinkerbella]

Maxine,

(((((((((HUGS)))))))))) Hang in there. You are in my thoughts and prayers. This heat has been giving me wacky #'s also.

bellamia

[potsgirl]

I'm sorry you're feeling so terrible and have so much going on! I'm in perimenopause, and it really kicks my rear and makes me feel much worse, too. I can also relate to your BP numbers, especially in the heat. I can hardly make it to our mailbox and back. I usually get the mail from the day before in the early morning hours when it's cooler.

You're not alone, and I'm wishing positive energy for you and that you start feeling better very soon!

[Maxine]

Thanks---I appreciate your support.

Dianne--------I imagine this is what happened to me Saturday. I must have been having the same thing going on, but I wasn't very connected to what my body was telling me. I have been laying really low, and struggle just around the house. When I get this my heart usually warns me, and Saturday it did. i assume it must have been low then too.... I have no idea. I should have another tilt table done.

However, I heard tilt table testing for EDS isn't advisable. I don't think we compensate like we should. I've had a couple of really bad grey outs when my heart flopped around in my chest----then rebooted...or that is what is felt like.

I don't trust anyone in this town to help me during a tilt table test. Not to mention I don't seem to have any juice left in me with the low catecholamines----so how would I fight a bad grey out this time?

Thanks again!

Maxine :0)