Bill5107 still having severe head pressure, bloodrushes

[Bill5107]

What can I say. Going on one week dropping my blood pressure meds altogether. after about a half a week of nasty low BP and nearly passing out while out at a store just window shopping.

My BP is apparently not bad right now but several times a day, whether I'm laid out flat, sitting or whatever, my head gets absolutely overtaken with extreme pressure. I end up on tbeing able to hear much of anything around me while it is pahpening and discomfort level goes up into the 7-9 range depending on how bad it gets. ON average once it starts, seems to taek 10 mintes at least and on average hits 8.

Monday when I was demanding that we do something different/hlepful/non-watchful-waiting X-|| I was taken aback when my onc just caught me off guard and make me crack up when he asked if we'd have my head examined yet! lol! It didn't register with me he was 100% serious, no comic intention and obvious in restrospect no? lol!

Anyway, I've since had my MRI and they held me until they examined 92 slides to see if there was any emergency in evidence. Looked like there was nothing on the brain but there is something going on. . . .wasn't clear what the message is yet, not too worried about details myself yet as I want them talking amongst themselves and pulling in whomever else the now need. Yesterday there was talk about the thickinging or swelling of the membrane around the brain, today it seems therewas more to observe as there is apparetnly "somthing" in the upper left mubmble-mumble... but not part of brain, seems outside. But slides weren't available to that Dr.

so my lovely bride will be trucking our copy of the CD up to where the DR will be bright and early Wednesday morning. (saving up to 2 days juggling images...I guess to get cheaper scans I should consider pre-ordering extra copies to drop into the more accessible systems my Drs use, eh? lol)

Anyway, hopefully having images will help.

it's super frustrating to live the way I have been. It's nearly impossible to live around me right now I know as well. This bullspit is really putting me through my mental limits, I have to say that. I'm also only barely able to do squat most of the time. I need DO something though'1 So I do read and try to listen to my podcasts and whatever I can do that will either pass my time or keep my mind distracted, or learning or whateverl I can find things when I feel up to it, so I figure that's at least good. It gets bad when I get frustreated that I know full well I cannot actually take care of myself in many ways.


Well, not sure this post came out, but I did want to update you folks. I am in fact still in the freaking wait-n-see mode personally. I have to take solace that smart brains, eyeballs and more are starting to focus on this 100%. I also have to trust that layering chemo on my body right in the middle of this new stuff isn't a terrible idea.

THAT does worry me a bit. I have to say I've been off chemo so long that I think many adrenal gland met is probably making things worse too and in any event, CEAS are telling me I need chemo. I've been off becasue my WBC has been too low to start again after radiation.

That's all I got for now people. What can I say, I still love y'all. New and old, just keep on doing what you do. It all makes a difference, it's up to us to make the differences count though. For me I'm in and out of a pretty rough spot, feeling literally locked up in my head several hours a day for what feels like an eternity at times. So my search continues at another time . . .

[NWgirl]

This must be absolutely maddening Bill, I'm so sorry. I hope the docs come up with some useful information and ways to treat this for you.

As always, thinking of you and sending good thoughts and prayers your way. Hugs to Lois and your son. And of course you too.

[michelle c]

Thanks for checking in Bill. Nice to hear from you but sorry that you are having these frustrating times. Hope you get some answers soon. In the meantime, hang in there! Love ya too! Love also to Lois and your son.

[RixInPhx]

Holy wow, I didn't realize things had deteriorated so much.

x2 on the above comments by nw and michelle.

It was my understanding that CRC rarely crosses the blood-brain barrier.
But it DOES get into bones, including the soft blood-carrying inner tissue of the skull; since you've had blood-marrow issues (which produces WBC's), perhaps the brainiacs are considering that. I dunno.
I have one dime-sized tumor 'lens' in the skull at my right temple, but it's never grown nor been a problem.

Do you have a pain-mangement doc on the team?
Occasional 7-8 pain sessions do not seem like something you should just expect to tolerate.
Have you ever had headache issues during your younger years?
Headaches can also be a sudden-onset system of dehydration/heat-stroke; KEEP HYDRATED, even to the point of excessive urination (while watching electrolytes).
Different colors/quality of light can also do strange things: Sunlight vs. incandescent vs new-fangled CFL's vs computer screens; the vision nerves are direct conduits to the brain.
Yet the olfactory nerves carry much info and affect different centers, especially long-term memory; any new odors in the house or neighborhood that could trigger something?
Just some ramblings of an old architect who tried not to pain his clients with ugly buildings.

If you have access to medical pot, it is wonderful for IMMEDIATE relief of moderate pain, since nothing gets to the brain more quickly than an inhaled substance.
Forget its history of negative connotations; it has been used throughout the world for millenia for effective pain relief, for good reason: It works, and it's relatively benign.

I'm glad you're acknowledging your body's new limitations, I think that will serve you well.
Listen to your body, and hang in there.

HTH, Rick

[Kathleen808]

Bill,
It is good to hear from you. Sorry to hear your pain is reaching such high levels. Good to hear that the docs are really looking into it. Update us when you can.

Aloha,
Kathleen

[Bill5107]

rick, the level 7-8 doesn't measure pain but pressure in my head where 10 is I imagine my eardriums popping, bleeding ro whatever other nastinesses I have no idea could even happen with unchecked crainial pressure! Lol! I had to make sure my Drs understood that something real is going on but not bone-mets, not whatever they keep asking about and everything about what they keep trying to _not_ talk about for some reason.

And it worked. Doesnt' make it more tolerable, it's still miserable and I do have my oxi and morphine based painkillers which I can hit up on but don't make a lick of difference to the pressure discomforts. It's really glue fs. nail/screw/pointing things. . . .

but you rassing it as a questoin here or discussion is probalby helpful in that it is good to think out what is the distinction and how to relate it and is it important. . . . sigh.

I'm also frustrated, and venting to friendly ears here I know. I nkow y'all understand if I drop off perodically now too. Wish I could give more assurances. Well. I'm gonna try to rest again. . . I'll catch ya'll on the flip side or two.

[ams5796]

Bill, You always amaze me with your upbeat attitude when you're obviously going through so much. You're in my thoughts. I hope that you get the pain under control.


ann

[tammylayne]

Hey Bill...sorry to hear you are having such a rough go right now. Let's hope that all those brainiac docs put their thoughts together and come up with a solution for you.

I get severe sinus headaches (NOTHING LIKE WHAT YOU ARE GOING THROUGH) and sometimes the pressure in my head makes me think it is going to just blow right off my shoulders...to the point of scaring me. Luckily it never lasts more than a day or 2....but not fun. I do understand how frustrating this must be for you, and I hope they come up with a solution for you real quick!!!!!

Please know we are thinking about you...and your family too of course!

[Kathryn in MN]

I still never found out what caused all my swelling (feet, ankles, legs and abdomen) in March and April - which at the same time I had severe ringing in my ears and pressure in my head. They did a brain MRI and found nothing, but the problems continued. They became less and less over the next 2 months. I may never know what did that.

With your blood pressure up and down that might even be the cause of that head pressure. It is maddening for sure - I hated it! I hope yours resolves on its own soon, or they find the cause and a way to resolve it easily.

You know I'm always thinking of you and hoping your pain and pressure get controlled. Keep finding those things to distract you - hopefully something very enjoyable for you.

[Joanne 814]

Continuing to keep you in prayer. Wishing you relief, some answers and comfortable days. Hoping things start to settle down for you.

Take Care,

ONWARD!!

Joanne

[pmterra]

Sorry to read your post, Bill. After all you've been through -- enough is enough!! I hope the doctors can figure out a way to help. Keeping you in prayer for better days to come. Your attitude is amazing I have to say, finding your sense of humor through all of this is admirable.

[Guinevere]

I'm glad we got to hear from you. I've been concerned but am so saddened to read what's been keeping you off the boards. I hope they get something figured out soon. Will be praying for answers and a effective treatment plan!
God bless ~
Guinevere

[BrownBagger]

I'm thinking of you, Bill. I really don't know what to say, other than good luck and let's hope it's something easily treated or corrected. As others have said, you've had a rough go of it, and somehow manage to keep your head above water. As I've said before, you're an example for us all.

[fritts44]

Hi Bill. Add me to the list of people hoping you get relief soon. As I was reading your post, I was thinking of one time I flew with a really bad cold. My ears wouldn't pop & it was one of the worst feelings ever! I truly thought my eardrum was going to explode. I'm guessing that's probably a pressure-level 3 and you're at an 8 -- I can't imagine.

It probably doesn't help that the pressure means you aren't resting much. I hope they have an answer for you soon!

[RayGirl]

Just wanted you to know I'm thinking of you and hoping you find some relief soon.

(((((hugs)))))