Post Traumatic Stress Syndrome

Hey Sherry ~ good to see you back on the forums 🙂 PTS is a crazy-making disorder! One never knows when: what or where or why it “pops up”. When a person experiences such a life-changing event, like GBS/CIDP, you can never be the same again. And for most of us, still on these forums, it was traumatic! Just the other day I burst into tears from “remembering” and what a surprise that was 😮 I had a good sob and then was thankful for how far I have come in all these long years . . . (Have you had any counseling with someone who really understands chronic health issues and the effects on the psyche? We have good “counselors” here and they don’t cost nearly so much 😀 )

So, see, you are in good company ~ ha!! Be good to you and do something comforting after an event (chocolate??)

Hi Sherry

I understand where you’re coming from. The one thing that sets me off at the drop of a pin is if I’m sharing my story with someone and they ask how my daughter coped (she was 2 at the time) and I start getting really overwhelmed and emotional talking about it and then they start losing it, because that for me (besides the GBS) was the second hardest thing to have to deal with, even more than the recovery. Even writing this now, thinking back to how it was with Madisyn, I’ve got tears in my eyes now and I don’t think that will ever change. I don’t see it as a bad thing or being negative, it’s just that when you’ve been through something so traumatic, the memories take a while to fade if ever. It’s better out than in I say.

Sherry, I feel the same way. My experience with GBS began in March of this year, so I’m still very early in my recovery. Ever since I came home from rehab, I’ve felt so strange. No matter what I do, say, or experience, it always feels just a little bit… off. Like I’m somewhere I’m not supposed to be, or like I’ve forgotten something, or like I need to be doing something else, though I have no idea what that “something else” might be.

Most of the time I feel surprisingly peaceful and even-tempered. But then at the strangest times, I’ll start crying profusely or get very angry all of a sudden… then the outburst stops as quickly as it starts, and once again I feel peaceful. Almost too peaceful, in fact. It’s very strange.

I saw an old woman with a walker going to the mailbox the other day and burst out in tears for about twenty seconds, and then I was fine. Likewise, when I went downtown for a doctor’s appointment, and upon seeing the city skyline, I cried madly for about fifteen seconds (the hospital where I was treated for GBS was downtown). Then I had to sober myself up by screaming at myself that I was fine, and there was no reason to cry anymore. I had a similar event the other day when I happened across some small purple flowers that were identical to the ones outside the hospital where I did my rehab.

I may look all right on the surface, but inside, I often feel like I’m cracking up.

It’s really such a false promise when the medical literature promises “full recovery” for Guillain-Barre patients. What is that supposed to mean? That we get our lives back just like they were before? That we are unaffected by the illness? That everything is just fine and we live happily ever after, never having to look back at those inconvenient few weeks, months, or years of our lives? Yeah, right.

That doesn’t mean that I plan to let my whole life be dominated negatively by this experience. But I do think it’s naive for family, friends, medical providers, or (gasp!) [I]ourselves [/I]to treat GBS like something that we can just happily get past with no lasting consequences. My mom freaks out when I say things like my life will never be the same after this. I don’t know why she finds that so upsetting… It doesn’t have to be a bad thing. But yes, GBS is a transformative experience. In varying degrees, I think many of us with Guillain-Barre experience a symbolic death and rebirth as we travel the unpredictable path through the worst part of the disease. And rebirth can be a wonderful thing, if we let it. But we also have to grieve the loss of our former selves in the process.

I feel like I’m just rambling now, but I’ve honestly been giving this a lot of thought lately. I’m struggling emotionally to manage all the myriad emotions that overwhelm me as I sort through my recent experience with GBS, but struggling isn’t always a bad thing. I think it’s necessary. I need to acknowledge all the fear and loss I’ve felt over the past months, and honor my own grief before I can move forward in a healthy way.

We’ll get through this. Just keep being honest with yourself and with those who love you, and remember that this too shall pass. And don’t hesitate to talk to a doctor about what you’re feeling, too. PTSD is a very normal thing, and if you feel very distraught by it, meds can definitely help. I’m still keeping that possibility open for myself if I still feel this way longer than I’d like.

Best wishes to you. Stay strong.

I guess you could call it a form of Traumatic Stress Disorder.
Sometimes out of nowhere I will remember a ton of details about everything that was happening during that week before nate was diagnosed, watching how sick he was, not being able to move, then breathe and going downhilll fast.
Then watching him be put in ICU and having to have Plasmapheresis, being hooked up to all kinds of tubes and wires and monitors.
His brother and I were so incredibly scared, all we could do was cry, watching him be so sick and so close to death.
Even the nurses told me they were very afraid for him.
Just remembering all of it makes me cry, even now.
Its still a long haul and its sometimes hard for me to relax, but things are looking ok and I think they will get better and better.
I’m sure its the same with you being the person it all happened to.
When you think of how far you have come, it should help. I know it helps me feel better.
It might also help you more if you had a professional to talk to about it. They’re trained, I’m not.
Trudy, natesmom

Sherry,

I think this forum is the best emotional support we could ever ask for. Everyone here is so compassionate and understanding. Not that our friends and family are not, but they just don’t get it sometimes. I am 10 years down the road and my family does not understand – my mom and dad did but they have since passed. So stick around here and we’ll help keep each other up and sometimes even happy 🙂

I think Suzanne hit the nail on the head. The literature does give false promises about 6 months to 2 years for full recovery. I can see why they want to be optomistic, but it is not the truth. When Zinnia’s mom died this month, I wondered if the death certificate said Heart attack. Perhaps that is why the death rate is low for GBS – it doesn’t get recognized or it is not the final blow and therefor nor listed. I bet that the death rate is higher. Or there should be another percentile for those that are permanently damaged. Therein lies the truth.

As for PTSD, I had that the year before I got GBS! SInce it attacks our nervous system, I think it is why we are so emotional. I see flowers blooming and cry. My counselor who has stuck with me when every friend and relative left, says that it sounds like grief. I lost my mother the year before and this year I lost my body(GBS), my hair(had to cut it off since my arms couldn’t take care of it and it became knotted) and I lost my friends. I look in the mirror and do not recognize the person in there. I lost my Self.

The doctors have no idea about GBS. When I told my doctor in Tampa that I thought I was getting it again (20 years later), he didn’t even blink – just calmly said, “Oh, they have plasmapheresis now.” Hah. Iwish they could give it to every future doctor. Can you imagine the change in their attitude and treatment? Perhaps a change in the literature so that they are not taught that time fixes us all better.

[B]I am positive that Zinnia’s mother’s death certificate said she died from heart failure. If she had passed away in the first few weeks of GBS they could have attributed her death at that time to GBS. The same thing happened to my husband when he passed away, the death certificate said he passed away from heart failure. But I know in my heart and my mind it was the GBS/CIDP that contributed to his heart failure in someway. [/B]

I was diagnosed with depression 18 months before i got GBS. I would cry for absolutely no reason and no matter how often i told myself there was nothing to worry about i was constantly anxious. There was no logic to the way i felt and no events etc that triggered my depression. My doctor told me that in some people it is just a chemical imbalance and I believe that as since being on medication I have been fine and have been able to cope just fine with events liek the death of my grandmother etc.

When i got GBS the doctors knew i was on anti-depressants. I had a couple of days where i was really low, felt like i couldnt go on etc but i would have a cry (well, as well as i could with dry eyes from not being able to open or shut them and no sound becuase of the tune down my throught 😀 ) and would get over it. I also found that the mornings were worst, especially if i had had a bad night. I felt fine when i was well rested. I know the nurses got really concerned but honestly, who wouldnt get depressed being paralysed, not knowing if and when you were going to recover. I thought i did well to stay positive most of the time and i think the times i did lose it were more to do with GBS than pre-existing depression.

GBS is definitely life altering and i can fully understand how anyone would be affetced psychologically by the experience.

Stormy’s question brought back a memory. Prior to my being diagnosed with CIDP I to had emotional problems. But, I was a MAN so I knew I could just handle the problem. I didn’t need any medication or assistance from any doctor. Wrong!! I finally visited with the neurologist and he explained to me that it could easily be an additional medical health problem. He put me on Lexapro and I simply can’t tell you what a difference it made. I continue to take the medication and I’m doing much better. Heck, I even feel like a MAN again. I recommend you discuss this with your doctor and try some form of antidepressant. Hope it helps.:

Zack Fisher

When nate was first diagnosed, they put him on Elavil, Trazadone and Lexapro.
I’m not sure why so many but it really helped him get through the really tough time when he was paralyzed from shoulders down.
I can’t imagine having to go through what he did. I would have been nuts really fast.
His new neuro took him off elavil though to see if it had any positive effect on his bladder dysfunction.
So far it hasn’t though but its only been two weeks. He is doing ok though as far as not having any worse depression symptoms.
Trudy, natesmom

I have met with 2 different doctors (once) who think I have PTS- but I never followed up with either of them- since they had never heard of GBS & I am hoping to find/talk with a professional who understands the illness. I think medication can be helpful but I haven’t gone that route. I’m not totally depressed- I really feel great most times- but then something will remind me how brutally hard it was in ICU & Rehab. I’m not sure how to process the memories- everyone says “talk” but I hate to dwell. Who will listen? My husband is tired of the topic- understandably. I just can’t seem to let go of things- like how my heart hurt when I couldn’t see my beautiful 2 year old son for a month. I still cry when I think about how much I missed him. I tell my husband where things are around the house in case “I’m not here someday.” There was a tower out my hospital window- When I drive by it now, I remember looking at it from my bed wondering if I’d ever get my life back. Who was giving my son his bath? Who was my husband eating dinner with? Life was going on without me- a realization that was shocking. I also get upset when I see someone struggling with a wheelchair, walker or cane. My body may be 90% back but I don’t know if I’ll ever forget. I agree that GBS changes a person.

not to change the subject but what does elavil have to do with bladder dysfunction? im on elavil and i am having bladder problems. thanks,barbara

HI Sherry,
I have not been on this forum for about 8 months but I am back, hoping I can handle it better and be able to help someone else. I go through the same thing all the time but mine has been heightend since the passing of my Father, then my Stepfather and now my Mother, all in a row and all of which were only in their low 60s. This all followed my second episode with GBS 2 years ago. I was on anti depressants following my 4 month hospitalization and wheened off of them a year later. I monitor my situation constantly because even though I hate medications this is a case that you cant mess around with. I have been close to going back on them a few times. I do notice though, that when my pain is really bad it definitly make the emotions run wild and the crying cant stop. I find myself constantly thinking of death and really bad illnesses etc. and it upsets me so much. When I start thinking about my GBS it does the same thing to me and I cant believe my husband and daughter went through all of the hell they went through with me. I have to say that the only thing that reassures me of anything is my Faith in God and I never would have made it through all of this with out it. Even though my GBS was a living nightmare I know that it touched other peoples lives in a way that wouldnt have taken place other wise. (it just sucks that it was at my exspense 🙂 ) Well once again it is nice to see that we are not alone in alot of these burdens and it makes me feel a little less “crazy”. Take care

Nate’s new Neuro Doc said that Elavil can make you not be able to tell if your bladder is full but so can GBS. The nerves that tell you that are not telling you if your bladder is full. It makes you not go very often at all.
He had Nate go off Elavil for awhile to see if it helped but it didn’t. He is still having the same problem.
We are going to see our primary doc today and get a referral to a Urologist.
Its gone on too long and I’m worried that he is damaging his kidneys. He has already had a kidney infection and was passing blood clots about 2 mos ago.
Hopefully he does not have another problem.
Trudy, natesmom