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jrae
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Attention Oct 19, 2019 at 03:24 AM
  #1
sorry about how this post is gonna come across but i've gotta do it......

i'm so f-ing tired of all of this: over 7 1/2 months of dealing with a concussion brain injury, nearly 20 doc appts in that period, and all the insensitive crap from people in my life! i'm so f-ing tired of being made fun of; okay, it's not exactly 'laughing' but you know, poking holes in what you say and implying that you're not bad enough (or symptoms aren't that bad...)!!!

today, i was getting botox injections in my head for headaches & TMJ issues.
they were only a third of the way done when i fainted right there in the PT exam room! my bp bottomed out so far that i lost consciousness- was under the 60/40 mark!!!!![i had to be helped from the chair i was sitting in over to the exam table] the doc & nurse plus two other nurses that assisted showed more concern than my own parents did!


i'm so freaked out by all this, and am now crying at the same time cuz the person in my life who would've almost driven 3 hours to get me/make sure i was okay, she died two months ago.
she was the one i would've been texting with right now, in the middle of the night when everyone else is sleeping, but we're still awake and i'm scared.


i'm still having some symptoms from today and have no clue how long they will last, if they will get better, or what for sure exactly caused it. (and more importantly, IF it will happen again)
and doctors in my rural area know nothing about Botox, so they are useless - i tired! i had 2 different emergency department visits in 12 hours!!!
(my afternoon appt was 2 1/2 hours away)

what the h**l is going on, and why me & why now????????
i'm already drowning in everything......
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Default Oct 19, 2019 at 04:35 AM
  #2
@jrae

I am so sorry to hear you struggling with all of these issues! I'm also sorry that your friend passed away recently. And then your living in a rural area makes it all the more challenging. I wish you had a better treatment team and more caring, understanding support. Gosh, I hope you're okay. Botox is a toxin, so they should be aware of the side effects it would have, and they should have warned you about it. Maybe there are alternative treatments that are less toxic for headaches and TMJ. Are you allowed to take Soma or some other strong pain reliever? I as given Soma after a dental procedure years ago, when my TMJ was really bad. It was a short-term solution, but it helped. I'm not sure how to spell the drug exactly, so I spelled it how it sounded to me.

Wow - 2 ER visits in 12 hours! That's serious! If you need to keep going back to the ER, I would. You might find a different set of doctors during shift change that can actually help you.

I cannot imagine what rural life feels like. Do you have any supportive friends you can stay with, just in case you have any complications?

Please let us know how you're doing. I hope you have a better recovery and some relief from all your pain. I hope you are surrounded by caring, sensitive doctors and a supportive network of peers/family.

(((safe hugs)))
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Attention Oct 20, 2019 at 01:16 AM
  #3
actually, living in a rural area is great, for the most part - I like it! wide open spaces, the stars at night, and the beauty of nature, you just have to drive a bit for shopping store varieties/options. the big problem- it just sucks when it comes to 'specialty medicine'. :s

and actually, my medical team so far has been good - great after what they did for me on Friday! there is a couple exceptions to that, one being the local ER doc-guy who was probably around 65yo and knew nothing of 'newer treatments'.

I was explained the potential side effects and given the info sheet to read. as with any medicine, taken thru a shot or otherwise, CAN have side effects- which doesn't mean they WILL happen.
it said right on the sheet: "The most common side effects include neck pain; headache; migraine; slight or partial facial paralysis; eyelid drooping; bronchitis; musculoskeletal stiffness; muscular weakness; pain in 1 or more muscles, ligaments, tendons, or bones, muscle spasms; injection site pain; and high blood pressure. Other side effects have been reported including allergic reactions e.g. itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint."

and on their website it says:
"Serious and/or immediate allergic reactions have been reported, including itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Get medical help right away if you experience symptoms; further injection of BOTOX® should be discontinued."

so apparently I had an allergic reaction to the Botox, which is not something we could've known ahead of time would happen. or for that matter, that my body would react the way it did and so quickly!

don't know what this means in terms of going forward, so we'll see. I am feeling better than I was yesterday; not that bad but still feeling not that good. I wanted to get a bunch of things done this weekend but it's looking like that won't happen - which I'm trying to be okay with, considering I should take extra extra caution with my body & head.
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Default Oct 20, 2019 at 01:26 AM
  #4
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Originally Posted by jrae View Post
actually, living in a rural area is great, for the most part - I like it! wide open spaces, the stars at night, and the beauty of nature, you just have to drive a bit for shopping store varieties/options. the big problem- it just sucks when it comes to 'specialty medicine'. :s

and actually, my medical team so far has been good - great after what they did for me on Friday! there is a couple exceptions to that, one being the local ER doc-guy who was probably around 65yo and knew nothing of 'newer treatments'.

I was explained the potential side effects and given the info sheet to read. as with any medicine, taken thru a shot or otherwise, CAN have side effects- which doesn't mean they WILL happen.
it said right on the sheet: "The most common side effects include neck pain; headache; migraine; slight or partial facial paralysis; eyelid drooping; bronchitis; musculoskeletal stiffness; muscular weakness; pain in 1 or more muscles, ligaments, tendons, or bones, muscle spasms; injection site pain; and high blood pressure. Other side effects have been reported including allergic reactions e.g. itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint."

and on their website it says:
"Serious and/or immediate allergic reactions have been reported, including itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Get medical help right away if you experience symptoms; further injection of BOTOX® should be discontinued."

so apparently I had an allergic reaction to the Botox, which is not something we could've known ahead of time would happen. or for that matter, that my body would react the way it did and so quickly!

don't know what this means in terms of going forward, so we'll see. I am feeling better than I was yesterday; not that bad but still feeling not that good. I wanted to get a bunch of things done this weekend but it's looking like that won't happen - which I'm trying to be okay with, considering I should take extra extra caution with my body & head.
@jrae

I'm glad they found the issue with your allergies with Botox. I'm glad you are feeling better. I just hope that you are able to recover fully and pain-free.

It's nice to hear an update and to hear that you're okay. Yay - an answer.

Yes, please take extra care of your body and head. Everything else can wait until you are healed enough to take care of tasks without risking your healing.

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Attention Oct 20, 2019 at 01:34 AM
  #5
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Originally Posted by lillib View Post
@jrae
...........

Wow - 2 ER visits in 12 hours! That's serious! If you need to keep going back to the ER, I would. You might find a different set of doctors during shift change that can actually help you.

I cannot imagine what rural life feels like. Do you have any supportive friends you can stay with, just in case you have any complications?

Please let us know how you're doing. I hope you have a better recovery and some relief from all your pain. I hope you are surrounded by caring, sensitive doctors and a supportive network of peers/family.

(((safe hugs)))
in hindsight, I probably didn't need to go back in that 2nd time. but the nurse I talked to on the phone said if this is an allergic reaction then I should get checked out again to be on the safe side (also considering I live alone and it's a weekend). she was the department on-call nurse where I had gotten my shot and we talked for over ten minutes. per her advice, I also picked up some Benadryl and will take that over the weekend too, along with the higher pain med I was prescribed.

I have no supportive friends to stay with. it was a bone-chilling day when I realized that with the death of my best friend (who was also my aunt), that I was completely alone [IRL]! that she had become in fact, my safety-net!!! that if I ever truly "needed someone", she was the only person in my life that I trusted.......

so no, I am not surrounded by a supportive network! and I had managed that over the years being on my own, with the severe depression and all - that is up until about two years ago.....
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Default Oct 20, 2019 at 01:47 AM
  #6
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Originally Posted by jrae View Post
in hindsight, I probably didn't need to go back in that 2nd time. but the nurse I talked to on the phone said if this is an allergic reaction then I should get checked out again to be on the safe side (also considering I live alone and it's a weekend). she was the department on-call nurse where I had gotten my shot and we talked for over ten minutes. per her advice, I also picked up some Benadryl and will take that over the weekend too, along with the higher pain med I was prescribed.

I have no supportive friends to stay with. it was a bone-chilling day when I realized that with the death of my best friend (who was also my aunt), that I was completely alone [IRL]! that she had become in fact, my safety-net!!! that if I ever truly "needed someone", she was the only person in my life that I trusted.......

so no, I am not surrounded by a supportive network! and I had managed that over the years being on my own, with the severe depression and all - that is up until about two years ago.....
@jrae

Thanks for explaining. I'm sorry you don't have a supportive network. And living alone must be tough.

Technically, I'm in the same boat; I've moved away from the small supportive network I had (which I wasn't that close to, but close enough to be friends for like a decade). I have lived on my own (no roommates) since 2006. When I got sick, I had to be lucid enough to call the ambulance to pick me up. I still have no one I trust for a ride from a double-endoscopy that I need (upper GI and lower GI to remove polyps), so they had to cancel the procedure. I still have not rescheduled.

But, I live in a city. Rural must be tough!

Gosh, if we lived in the same town, I'd totally try to help. I cannot believe you're all alone, dealing with all this stuff, and then grieving the loss of your best friend/aunt. That loss must be really hard. ((((hugs))))

Shouldn't someone be with you while you are recuperating from all of these things? At least to check in on you?

I don't know what I'm going to do when I get sick and have no one. I have a hard time trusting people when I'm physically vulnerable. I've been burned once when one of my exes stole from me, including some checks. I called the police on him and filed a report. I got reimbursed, and I walked away from that. I was ill at the time. Way to take advantage of a sick person!

I hope you are doing okay. I'm sorry you're alone.

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Attention Oct 21, 2019 at 08:54 PM
  #7
i guess it is called a vasovagal reaction. and the thought (for now) is that it was brought on by the procedure, not necessarily the medicine. have to closely monitor myself & my symptoms cuz if they don't improve or get worse, it may indicate something else is going on and I'd need to be checked out again.

just been a rough few days; everything that happened Friday, no appetite since then, pain, nausea, and other things. the new things could just be my body's response to what happened or something else. man the waiting-game sucks..........
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Heart Oct 21, 2019 at 09:10 PM
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Originally Posted by jrae View Post
i guess it is called a vasovagal reaction. and the thought (for now) is that it was brought on by the procedure, not necessarily the medicine. have to closely monitor myself & my symptoms cuz if they don't improve or get worse, it may indicate something else is going on and I'd need to be checked out again.

just been a rough few days; everything that happened Friday, no appetite since then, pain, nausea, and other things. the new things could just be my body's response to what happened or something else. man the waiting-game sucks..........
I am so sorry. I hope the vasovagal reaction clears up, and that you do not have any post-op complications anymore.
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Default Oct 22, 2019 at 03:21 PM
  #9
Good for you for venting! jrae, you have sooo much to deal with right now. It's a cruel feeling when your own family doesn't support you. I'm there with several significant family members. Damn, it HURTS. I've gone outside and found support elsewhere.

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Attention Oct 25, 2019 at 01:08 AM
  #10
one of the harder things was sitting alone in the Emergency Department room for like a half hour! I pulled my cell phone out, stared at it for a few minutes, then put it right back in my pants pocket - had no one I 'could' call (or wanted to). and having driven 2 1/2 hours to a big city to see the specialty doctor, I was literally all alone.

and thank you very much for realizing what I wish those around me could - that there's just too much and I'm buried underneath it all

and YES, damn it HURTS!!!!!!!!!!
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Attention Nov 06, 2019 at 03:52 AM
  #11
I'm turning to you guys to talk to, since i don't have my aunt anymore. so sorry if this gets long.....

i just saw my BI-doctor (brain injury). and i was thrown a MASSIVE curve ball, completely unexpected!!!!! i guess I figured that after the Botox incident & my hypotensive episode, that they would be like 'so with that out of the water, this is plan C, this is plan D, and this is plan E -> what do you think about those' - you know, something along those lines in terms of other treatment options. NOPE - that didn't happen. the opposite actually!

in long terms short, they said they think there is a secondary thing going on with my brain -> in ADDITIONAL to my current brain injury!!!!! yeah, you read that correctly - TWO things wrong/going on with my brain! could be something like an aneurysm (maybe not that severe of a thing) or avm (i think were the initials) or something that was there and is now 'activated' or became symptomatic. SSSSOOOO.....

they did a blood draw and put in an order for an MR-Angiogram.
basically looking at the blood vessels in my brain. (and maybe the MRI missed something) and i will also see a neurologist, who will probably order more tests. it's kinda like gathering more information, to figure out what's going on with my brain - as in why things are taking 'longer', not responding the way they hoped or it maybe should have, and things like that.


i'm scared out of my f-ing mind!!!!! i mean, it's my brain for crying out loud - not like a leg or arm or something like that. this is my brain they're talking about - the thing that controls my ENTIRE body! yes, i am over 8 months into my current brain injury, and i'm well aware that there are things not improving and/or getting worse. which btw is f-ing scary itself!!!!!!

my BI-doctor said they won't do anything in the meantime, until i see the neurologist. and since that appt isn't until 12/05, it means an ENTIRE month of waiting! and the other part of this that i haven't yet told anyone about (outside of my docs), is i'm having problems with my eyes (due to the brain injury)! i've got double vision, blurry vision in one eye, "very sluggish pupils", and photophobia!!!!! these things are to the point where my optometrist wants regular visits EVERY 2-3 weeks to monitor changes / fluctuations / new or worsening symptoms! and THAT will continue for however long it takes for my eyes to 'stabilize' !!!

i'm 8 months in and just had doc appt number 25 - and that's brain injury related ones only!!!!!! i have a gut-wrenching feeling i will BLOW past my one-year mark when that comes, probably topping the 35 number!I'm so scared out of my f-ing mind that i've been crying today. and i'm not the emotional type!

what if these symptoms don't get better?
at what point do the docs start looking at long-term symptoms and just managing those??? and the worst, what if the 's' word comes up?!? this has honestly been 'the year from h**l' for me. i want off this f-ing ride cuz it's gonna kill me. adding all this on top of everything else -> i'm already in the deepest hole and can't even see any light, no need to keep dumping water on top!!!!!


everytime i get a headache, there's that voice inside me that starts wondering if it's 'just a headache' or if it's really something much worse going on..........
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