Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi all,
After my first LP shunt revision, I had sepsis, plus 6 IV's in two days since my veins kept blowing out...anyway, I've never been so sick as that time. At one point the nurses were going to put ice packs under my arms (I had one on my head) to get my fever down and I was begging them not to...since I had the worst chills and felt freezing.
By the 5th IV, after many pokings, I was trying to convince the Dr's that I didn't need anymore (my arms were so swollen, hard, red, and hurt so much since it gave me phlebitis (sp?).
I had sepsis from a UTI I didn't even know I had and the Dr. told the nurses to put a catheter in me and I lost it....I was crying and saying "I have rights" when i told them to take it out.
I'm 47 years old and I have never felt so out of control and scared (I've had many other surgeries for other things).
Ever since then I feel an impending fear and have flashbacks to that hospitalization. I used to work in the VA and all my pt's had post traumatic stress syndrome. Of course those brave men had it from being in combat.
I was wondering if that is what I am having (post traumatic stress sydrome). When I was younger I experienced it from my father abusing me. Could someone get it from being hospitalized and being so sick? Or am I just being a baby?
Jazzy
After my first LP shunt revision, I had sepsis, plus 6 IV's in two days since my veins kept blowing out...anyway, I've never been so sick as that time. At one point the nurses were going to put ice packs under my arms (I had one on my head) to get my fever down and I was begging them not to...since I had the worst chills and felt freezing.
By the 5th IV, after many pokings, I was trying to convince the Dr's that I didn't need anymore (my arms were so swollen, hard, red, and hurt so much since it gave me phlebitis (sp?).
I had sepsis from a UTI I didn't even know I had and the Dr. told the nurses to put a catheter in me and I lost it....I was crying and saying "I have rights" when i told them to take it out.
I'm 47 years old and I have never felt so out of control and scared (I've had many other surgeries for other things).
Ever since then I feel an impending fear and have flashbacks to that hospitalization. I used to work in the VA and all my pt's had post traumatic stress syndrome. Of course those brave men had it from being in combat.
I was wondering if that is what I am having (post traumatic stress sydrome). When I was younger I experienced it from my father abusing me. Could someone get it from being hospitalized and being so sick? Or am I just being a baby?
Jazzy
I don't think you're being a 'baby' at all.
I would feel the same way if I were you, too.
Hospitals can definitely do some crazy numbers on some people-whether it be from all the medications, the environment, the sickness/illness you're there for, or whatever.
I'm kind of dealing with something similar right now-I was just recently hospitalized and had like 8 IV's, left the hospital SICKER than when I went in because they neglected to pick up on a serious problem they caused when they did my LP even though I was throwing them my new symptoms out left and right.
Now, I am kind of terrified to have to go back to the hospital because I'm too scared to be drugged and be by myself and sick and not be able to stand up for my rights and myself as a person.
I'm also not sure I'll ever be comfortable having an IV put in again-I"m terrified of it, actually, because they blew so many of my veins in there. I've never had trouble with the right people finding good veins to use.
I don't know, but I know it's not just you being a baby! lol
I would say it is very possible, and highly likely. Any traumatic experience can cause PTSD. From working in the world of motherhood, a traumatic birth experience, like ones with lots of complications, can cause it. We'd take special care with those moms in subsequent pregnancies. Along the same vein, women who were sexually abused as children sometimes find themselves feeling victimized again during the delivery of their baby (PTSD and pain triggering fear and loss of control... very sad). All of this is just to help validate what you are feeling, but I don't think you really need it. Even if you were being a baby (and you are NOT being a baby)... if you feel a certain way, it's a real feeling.
Unfortunately, people in our situation can't always successfully avoid a hospital. So, how to crack the anxiety? I'm no shrink, but I might suggest some creative visualization. Maybe visualize the next stay going very well. If you can't picture the whole stay without getting anxious, picture parking your car. And progress forward, like the systematic desensitization they do with a phobia. Just a suggestion. But if "fear and flashbacks" are getting in the way of you living or getting treatment, then you need to talk to your doc about it.
Anyway, before I start sounding like an ABC afterschool special, I hope you can find some relief soon, both physically and spiritually.
Take care!
Arrrh 8 IV's, and they hurt so much when your veins blow. I wonder if our veins are less viable from all the meds we take.
I still have a large red blotch on my right wrist from the phlebitis..a nurse told me she had that happen to her and it took a year to get rid of it!
One nurse told me..."you need to work out your arms so your veins will be better". I have no idea if thats true but I am using weights at home like crazy, lol
I was actually suprised at myself when i was yelling out that I have rights. Usually, i would just suffer and put up with it, I guess i had reached my limit.
I know, it is hard to stand up for yourself when you are in pain/sick. Your just trying to deal with getting better than having to be assertive on top of it.
I'm sorry they didn't catch what was going on with you...it was pretty much ignored when I kept telling them that the LP they gave me while I was hospitalized gave me sciatica..after I was discharged I went to the ER the next night from the sciatica being so bad that I was writhing in pain, even after taking pain meds at home, crazy.
yeah, a possible upcoming surgery is freaking me out and bringing this stuff up even more.
Ok, I'm rambling, thanks again for making me feel not so alone in all of this. Jazzy
Remember this is stressing your system on top of your health, there have been bad experiences for us all.
I know myself, after my failed shunt, they sent in a psychiatrist to talk to me, They knew it was the start of something much more series than just a slightly botched procedure, I was a wreck, and even explaining it to the team that was examinining me last night, when I got to that part of the history, you could hear the anger and fear in my voice.
The first thing the doctor did, was reassure me that even though I was complicated, they weren't going to just give up, we would find the answers together.
I think if you are in the right hands, your trust may come back a bit, but its natural to be afraid.
Hopefully this new doc is more sympathetic to your needs, be upfront about the fears too.
Charlotte
it was interesting what you said about feelings of being victimized surfacing with medical stuff, because I was also sexually abused as a child, and I'm sure it triggered emotions from that.
I did find out today that the hospital I went to offers 3 free sessions with a guided imagery therapist if you have had a procedure or surgery in the last 3 months so i am going to make an appt.
That desensitization sounds cool...I would like to learn more about that.
I called my Dr. and he gave me a presciption for an anti anxiety medication..I know they are very addicting (last need thing I need is an addiction on top of everything else, lol) so I took a 1/4 of a tab today and it helped for awhile.
You don't sound like an afterschool message, you really helped and I thank you.
Jazzy
thank you for sharing what you go through. Yeah, the last time I talked with my NS and the word "another surgery" might be needed my hands started to shake and my heart went racing.
I usually want to know everything that will be done to me and what the surgery will entail because it gives me more of a sense of control and this time I feel myself shutting down too.
I am curious about the muscle relaxer...does it work like an anti anxiety medication? maybe I should ask for that instead of the anti anxiety medication. I glad it has helped you, and thank you for helping me.
Jazzy
Last night, I had, what I think was a panic attack. They are not fun.
You are right, I need to tell my new NS about my anxiety and remember that he is there to help me.
I think in the hospital when I was in so much pain and feeling so sick I was just trying to survive what was happening and now all the emotions are coming up, because I feel so overwhelmed.
At least I know that this is a normal process to go through and I thank you for helping me.
Jazzy
the Clonazapam that I am on now is an anti-anxiety and muscle relaxant, it doesn't help with the pain,but it definitely helps my moods, the stress makes the headaches so much worse.
I am only on a half mil once a day, because its the 2nd most abused drug in the US, and so addictive, I can see why, after a few days on it, I noticed a huge difference in how I handled the fears of the unknown. THis disease is so stressful especially with the unknowns.
At first when I found out what it was I was miffed because I had always been a strong person, but this has taken everything out of me this time around.
Charlotte
I think that Guided Imagry is exactly what you need. I expect it will be a lot like I was describing... only better. Very cool that your hospital offers that and I'm glad you are going to be able to take advantage of it.
Good Luck!
I made an appt. with a guided imagery therapist at my hospital's health and healing center...She said I would get 3 free sessions. And I went to the free healing support group which was nice..it is guided imagery and expressive art therapy.
I started to take bach flowers the "rescue remedy" and that seems to help a little, but when it is really bad I take 1/4 of the anti anxiety pill...I am really trying hard not to take it, but sometimes the anxiety is too much for me and need the extra help.
thanks again for all your help!
Jazzy