Question about depression
August 7, 2007 at 7:45 pm
I had depression before GBS, but have more mood swings now. We have been thru so much with GBS, therapy, recovery, and have suffered a great loss of who we used to be. I, for one, am having a hard time accepting who I am now and my limitations. It is depressing, frustrating, and I end up in tears sometimes. I feel like less of a person because I have to tell my kids “I’m having a rough day…I cant….not today…” and so on. It hurts. There is also the fear we live with to some extent that adds to our “downtime”. It all adds up to a depression. I am on a low dose of wellbutrin. It helps to some extent. But if your meds arent doing the job, talk to your doctor about trying something else. You deserve to have some relief. I also write in a journal when I get tired of feeling like I am whining about how much this has impacted my life. GBS is all consuming and it changes you. It may be easier, depression wise, once a person can accept how things are for them after the fact. I dunno. I am only a year post onset and am not ready to accept that this is how things will be from now on. I want to get better some more so I have less down days and more productive days. I pray that happens for all of us.
AnonymousAugust 7, 2007 at 8:59 pm
I guess I get frustrated when I get futigued have to tell the boys no I can’t do that right now. When I have to sleep for 3 or 4 hours just to make it through the day. I sometime the pain is just so bad, or noise is so loud that others just can’t understand. My nerves just sometimes on edge and I think man when is it going to end. I wake up in the middle of the night with a migraine. (Yes, I have the drugs for all of these, cymbalta and such). I try to think on the positive things but there are days when I play over in my mind the day it happend or different things. I know that I do have limitations to overcome and think about that sometimes. I excerise. Take vitamins. Meds. I may start journaling. I know it is hard for young kids to understand all this and what is going on and that is what makes it so hard.
AnonymousAugust 7, 2007 at 10:50 pm
Depression affects so many of us, even if we are on medication for it. I have been speaking with so many people lately who have been having such a tough time with depression (who also take meds). For many of us, its realizing that we just cant ‘be there’ for our children, or live the life we thought we would at our age. I want to have the energy and I wish I didnt feel weakenss when I exert myself. Do I want my children to remember me as being sickly and often with absolutely no energy ….. the anser is NO! I would do almost anything to change that. I have now realized that depression because of our limitations is much more common place than I first realized. So many people are not prepared to really admit to being depressed, even after meds. I think our sub-conscious is more powerful than we realize, and just willing ourselves to have a positive attitude, no matter how hard you try, is not enough to overcome this.
AnonymousAugust 8, 2007 at 1:05 am
Depression can be a part of any illness but especially those that are life-changing. It’s like being on a plane headed for Disneyland and when you disembark you find yourself in Russia, mid-winter. Wow, you only have shorts and tank tops and you need parkas and mucklucks. Oh and what is that language they speak??? And, you find out that you can’t get back on the plane and go where you had planned for!! Talk about tough 🙁 [I]You have to learn a whole new way of living.[/I]
Also, there are chemical changes that have happened that may need assistance to find balance again. Drugs do not heal, only support the body as it seeks to find homostasis (healthy balance). So, I believe that the answer to your questions is yes.
I wish you well 🙂
AnonymousAugust 8, 2007 at 6:24 am
from what you say, it seems to me that you are run down more than depressed. you must take care of yourself 1st. it is not bring selfish. you can’t do for others if you are not well. make sleep/rest a priority. if your family can’t understand this, send them to this board. how much neurontin [or whatever] are you taking for your pain? take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 18, 2007 at 10:47 pm
I use Cymbalta 120 mg and it is for pain and depression. I have tried almost every type of antidepressent there is, and they work for a while but something always doesn’t work or had a bad reaction.
I have a lot of exhaustion and I try to deal with it a day at a time. I will save myself for important things. Rest a lot and play here and there and pay the price. I push sometimes too much, but I don’t want to live in bed all the time. I use two canes instead of a wheelchair. I want independence and it is not easy. It took a long time with PT to get to walk again. I have hardly any balance so I have to be careful.
Anyone who has GBS is depressed to some degree. Our lives have been changed and it is so very hard to adjust. I still have very bad days, but I have some very good one’s too.
August 20, 2007 at 11:59 am
Depression affects care givers too.
Dawn Kevies mom 😮
AnonymousAugust 25, 2007 at 12:19 am
[QUOTE]It’s like being on a plane headed for Disneyland and when you disembark you find yourself in Russia, mid-winter.[/QUOTE]
LOL I have lived in Siberia for ten years now and cannot seem to find the return train home to a healthy lifestyle 🙂
/me looks for train schedule
AnonymousOctober 4, 2007 at 1:12 pm
There are so many things that can be depressing; yes, even after taking meds for it. I look at it this way, God is pruning us for something good. It could even be something good for someone we help, or something to make us a better person. I know there are people who don’t believe in God, and that makes things much harder for them. Oh yeah, I have as much pain as most anyone on this forum, but it has made me a better person, and I have had a few people tell me I am a blessing to them. I know there are many others that I have helped and don’t even know about, but will someday when this life is over.
Drummer Boy 🙂
October 8, 2007 at 7:01 pm
So true Drummer boy, we are blessing to many people that see us laughing even thoug we are in constant pain, why does we take live so light, well we stood in the door of live and dead and we survived and each day is blessing. Deepresion is somthing I did have when I got divorce 11 years ago, I found out then I had been deepressed many years. Today this is not opsion for me, I have 5 kids and wonderful husband, and Im alive:) 😀
AnonymousOctober 9, 2007 at 8:29 am
I just got up and after reading the replys from Tofraljos and Drummer my face is glowing. I agree this happen to us for a reason and yes we help others everytime we reply or we get love and help.
As most of you know 6 months after my GBS I had a triple bi-pass and I accepted this and turned it over to my God. I am walking and takeing meds I do not like and still getting withdrawl from not smoking and I am so blessed with friends that care with my health and a beautiful day and being able to give to others and to bring them hope and guidance. I will say it again our care givers are a gift from God with their love,support,strength,understanding,
SOOOOOO looking back at the start of this walk and the walk and where I am at this moment I thank God for carrying and helping me and guideing me and useing me to give back to others to try to make their walk smoother. May Gods blessings be with everyone (Steve)
October 15, 2007 at 2:24 pm
Good to see you online and happy Steve, it is great how fast your recovery is after the surgery. Yea we are blessed for we stayed alive through all the tough things we have gone through, and my family is recovering from the thoughts “I shall do this for you” and that is good so I dont feel as much handicapt as I did few months ago:D 😉
AnonymousJanuary 17, 2008 at 11:10 pm
[QUOTE]Is depression a part of GBS? Just wondering.[/QUOTE]
Yes. Have you a diagnosis from a good psychiatrist. If so, what is it? Treatment depends upon your life situation and medications should take into account other health issues, as well. A GP can prescribe any medication, but it is best to go see a specialist.
AnonymousJanuary 18, 2008 at 10:25 am
i hope i am not putting words in rocker’s mouth by saying i interpret what he says as many w gbs get depressed [zoloft is a good 1st Rx try] cuz it is a miserable thing to have, but gbs does not directly cause depression. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 18, 2008 at 11:49 am
Hey Gene! ~ question/theory ~ if GBS messed with the nerves in the brain, the confused signals would change the chemistry and therefore a result could be depression. So often we’ve been told that GBS doesn’t do this or that only to be find out differently “down the road”. I’m not saying that this is so, just questioning!!
And yes, living with this “stuff” can warrant depression in and of itself 😮
AnonymousJanuary 18, 2008 at 3:45 pm
Yes, I think we all go thru depression, it is such a life style change. I hate that the 3 grandkids (12-8-& 5) will always remember me as Granny in the power chair. They feel my legs and feet to see how pain is and keep asking if I will be walking again. I just answer “If I can”. I was initiatily in so much pain for about 8 months before Dx., I can honestly say depression is not as bad. 60mg Cymbalta helps also. I just hope Mayo will find an answer to the pain in legs and footsie problems. Keep mind busy, but lots of rest. Regina
AnonymousJanuary 18, 2008 at 3:55 pm
That’s correct, Gene, and I do appreciate the clarification. I meant that depression is not an integral part of the disorder, that for me it was a residual because my coping skills/support networks were insufficient to deal with the changes in my lifestyle. A lot of GBSers do experience depression, but there is no evidence it is directly caused by GBS. Additionally, I waited a long time before seeking treatment.
My depression is dysthymic, a low grade chronic form with wonderful anxiety attributes! Hence, I might take a different medication than someone with a bipolar disorder or one of the many other different flavors of depression. Here is a link to a definition of “Dysthymia”.
[QUOTE]if GBS messed with the nerves in the brain, the confused signals would change the chemistry and therefore a result could be depression.[/QUOTE]
Judi, can you point me to info that supports the premise that there are actual changes in the brain related to GBS?
AnonymousJanuary 18, 2008 at 10:08 pm
re: your theory, i don’t know if it is possible. my gut feels says it could be if gbs effects the brain. the 11th edition of the pdr [a long time ago edition] says gbs effects the brain. i don’t know if that has been disproven or not now that it is no longer said. ah, the sureness of gbs – lol. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 20, 2008 at 2:06 am
[QUOTE]ah, the sureness of gbs – lol[/QUOTE]
That is such a hoot! LOL
I ask, Judi, in that I have not seen any data that supports the premise, not that GBS might ill-effect the brain or tie depression to the true residuals.
The issue of depression related to GBS came up in a different thread recently, which got me thinking. I think of my depression as a residual, but really it isn’t. The brain is not a part of the parasympathetic system, where the disorder musters its evil effects. I mean, it is how I reacted to the illness- how I dealt with the stresses of a drastic change in lifestyle- that fostered my depressive complex. So, I could see that the brain might be directly effected by GBS if depression were a mainstay, or that the damage was associated to a physiological process similar to that of fatigue, but it is not as far as I can see.
Some confirm that selective serotonin reuptake inhibitors (SSRIs) help depression related to GBS, based upon what I read in the various forums (IE citalopram (Celexa, Cipramil, Emocal, Sepram, Seropram) escitalopram oxalate (Lexapro, Cipralex, Esertia) fluoxetine (Prozac, Fontex, Seromex, Seronil, Sarafem, Fluctin (EUR)) fluvoxamine maleate (Luvox, Faverin) paroxetine (Paxil, Seroxat, Aropax, Deroxat, Rexetin, Xetanor, Paroxat) sertraline (Zoloft, Lustral, Serlain) dapoxetine) They help to relieve the symptoms of depression by increasing the available supply of serotonin, a substance in the brain “believed to influence mood”- it does not mean that the imbalance is caused by GBS, even if the “believed” effects could be measured. Again, a dramatic change in lifestyle may cause the brain to function differently in individuals under duress or distress- even in individuals who have not undergone physiological trauma. Honestly, I find it confusing that serotonin levels cannot be monitored by blood tests or any other kind of test. Instead, professionals prescribe it and after a few months ask the patient if they “feel less depressed”! I mean, if certain depressions are the result of decreased serotonin levels why can’t they figure this out with some kind of test, before trying this gut level feeling intervention?
As for my own experience, WELLBUTRIN seems to work better than an SSRI; it contains bupropion (the active ingredient). It is different than SSRIs in that it is a dopamine and norepinephrine reuptake inhibitor, which effects the brain differently. It is said that in studies Bupropion is “more effective than SSRIs at improving symptoms of hypersomnia and fatigue in depressed patients”. A recent study indicated that taking this NRI/DRI in conjunction with an SSRI my be even more effective than one or the other :”The addition of bupropion to an SSRI (primarily fluoxetine or sertraline) resulted in a significant improvement in 70–80% of patients who had an incomplete response to the first-line antidepressant.” I would like to give this a try, but since I do not have insurance I can’t even afford WELLBUTRIN (Generic= $109.36 per month).
Anyway, I have not seen any research that offers a correlation between GBS and changes in serotonin or norepinephrine . Then again, there is so little research concerning rare neurological disorders who knows. Such a link would suggest that perhaps there are changes in the brain chemistry directly associated to GBS, linking it to depression. In the mean time, I think gene hit the nail on the head (pun intended).
AnonymousJanuary 21, 2008 at 4:42 pm
You bring up an interesting question. Unfortunately, I don’t think is a real simple answer like changes in brain chemistry that fully explains the link. First, Dr. Schilke who is our GBS Support group leader said he thought depression and GBS are integrally linked to one another and I believe that.
I haven’t seen any evidence of GBS changing brain chemistry or anything about GBS to suggest that there is a direct chemical link between the two.
There is ample evidence that the mind-body link isn’t just a one way street where the mind tells the body what to do. Zimbardo and Rusch did a study on anger in the late 1960’s in which students were given adrenalin and then given a questionaire that was supposed to be emotionally ambiguous. The students ended up being infuriated at the questionaire, obviously interpreting a state of arousal that the body is sending to the mind into anger at the nearest available target. This study led to others which found that the mind usually check the body before assigning an emotion to a given situation.
With that in mind, I think it is wise to look at the similarities between the symptoms or realities of GBS and the symptoms of depression. Both have the following in common:
Loss or increase in appetite
Changes in sleep patterns
Change in activity levels
Loss of interest in things which give you pleasure, such as hobbies
Changes in levels of socializing
Boredom or loss of interest in everyday activities
I would suggest that the changes in your life due to GBS and classic depression are similar enough in terms of bodily response driving emotions, that your mind takes the incoming input from the body and hangs a depression tag on it.
From what I have seen, there are some pretty subtle differences between GBS driven depression and classic normal depression that it is pretty easy to lump the two together. Generally, people who are classically depressed have an overwhelming sense of sadness while those with GBS don’t, unless someone is grieving the loss of body or independence.
AnonymousJanuary 21, 2008 at 5:22 pm
That is interesting, Lee.
I am not sure, but I think adrenalin does change brain chemistry and electrical activity in the brain, which might explain the change in mood. For myself, I actually developed depression at or around my third year Post GBS. Then again, perhaps I was depressed and the depression increased due to my frustration related to fatigue/ change in lifestyle. I did read something to this effect in “Disability After “Recovery” From GBS” but the summary was not specific. I’d love to see a clinical study that defines the common GBS depressive symptoms as different than other standard forms of clinical depression, so if you can point me to such research I am quite interested!
On a related note, my psychiatrist tends to look at my fatigue as a part of my depression, as opposed to the result of nerve damage. So, I am sure we do present a difficult clinical impression.
I’ll give this more thought, perhaps dig a bit…hmmmm
AnonymousJanuary 21, 2008 at 9:59 pm
As far as I know, there never has been a study about GBS and depression. Furthermore, since GBS is so rare, there may never be a study of GBS and depression.
As for my theory of what the actual link is between the two, well it is based on bits and pieces of facts brought together during the four years I was studying psychology in college. I seriously doubt there is a single study that ties up all the lose ends, but there are bits that can be strung together in order to make an educated hypothesis.
Could I be wrong? Sure, you bet. But I took several months putting the puzzle together. Designing a research project to test the hypothesis is more labor intensive than I can handle right now.
AnonymousJanuary 21, 2008 at 10:53 pm
The only report I have seen related to depression differing in GBS patients was in the article referenced above. It stated “The role of depression in psychosocial dysfunction after GBS is not fully understood. The sickness impact profile of GBS survivors was found to differ from the profile of other patients with depression”, but there were no footnotes. I am also not sure what was meant by sickness impact profile.
Let’s keep looking for info. Gene, any pointers?
AnonymousJanuary 22, 2008 at 10:00 am
i can’t really add anything of concrete value. my opinion is valueless now that i think abt it. who knows what will be proven in the future. last nite pbs aired ‘the lobotomist’ abt walter freeman. where there is a falsity, others can exist. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 22, 2008 at 10:45 am
Your opinion is not valueless and it never has been valueless. You have provided so much help to so many people for so long. The fact that you still post as much as you do says so much about your character. The fact that you said “I’m not sure” is a good trait.” I think I said the same thing but in a fancier way. Anyway, the fact that nobody knows is an important point to establish.
Keep up the good work.
AnonymousJanuary 22, 2008 at 5:23 pm
Yes, I agree with Lee. :rolleyes:
I find your comments valuable, for you are gene, gene the answer machine! In doing so you have helped many perhaps without you even realizing it. yes, part truths are dangerous at times, but with GBS frequently it is all we have- an educated guess at best.
AnonymousJanuary 23, 2008 at 8:29 am
thx for the nice compliments. i think i should have said my opinion was not backed by enough info to matter in this case. i have tried to stay on the forum to help others even though 2ish years ago i finally felt more normal than sick. that’s when some of us leave. i am still limited by fatigue and foot pain, but not nearly what others have here. it’s amazing how the human body copes. during my 1st 8 months, i was in excruciating pain & death would not have bothered me much. now that my present pain is abt 2% of the peak, my body adjusts & i complain to myself abt it when years ago i would have given a limb to have the pain reduced to this present level. looking back over the last 8+ yrs i see that little has changed regarding treatment. but the medical community does seem a little more educated. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 1, 2008 at 1:36 pm
The pain was so bad that I even thought about suicide. 😡 I am not going to kill myself. I have a family who loves me. I just am sick and tired of being sick and tired. Do any of you think or have thought about suicide because of the pain being so bad even with meds? Is suicidal thoughts normal?
AnonymousApril 2, 2008 at 4:21 am
Yes and yes! First, this is a “not so nice” disease and second it life-changing for the most of us. That in itself is a huge adjustment. How long that process takes is an individual thing. I tried many times to find a trained counselor to help me walk thru the process. But guess what, they hadn’t experienced chronic illness for them self so didn’t have a true-to-heart frame of reference. I survived and my marriage survived in spite of them 😀
It’s not a bad thing to be tired of being sick and tired. Just recognize it as part of the accepting process. There will always be a day, here or there, in which one will long for “before GBS”.
These guys who have posted before me are very knowledgeable and caring people ~ listen up! 😉
AnonymousApril 2, 2008 at 11:16 am
Judi & Kinney,
I had those thought in hospital and even planned how I would do it. I kept those thoughts to myself until after I was home and then confided to my husband the thoughts I had while in the hospital. He was very understanding. I have been home almost 4 months and those thoughts were gone after 3 weeks at home and I was finaly able to take care of myself and less dependant on my husband. Thank you both for letting me know that others think that way also.
dx GBS 11-07
AnonymousApril 2, 2008 at 1:42 pm
I truly believe we are not alone in this and that many of us have contemplated being done with it all. I remember begging my husband to unplug my respirator and to just let me die. Thank God he told me what I could do with that idea! Being sick with any serious illness can be so depressing. I find coming here, even years later, helps me to focus on what I have in my life that is good and keeps me on the straight and narrow.
Kinney we all pray for each other all the time so I have added you and others to my prayer list. Be well and God bless.
AnonymousApril 10, 2008 at 6:59 am
Hmmm…Nice to know that I’m not alone with these thoughts. I fear a GBS relapse and my Drs say I’ll probably have a stroke first. My neuropathies are in constant flux. My Diabetes T1 really messes with the GBS residuals. I do small tasks but they really wear me out. There are still times when I can’t do anything and that’s when the depression makes me want to end it all. I’m helping my mother for now but when she’s gone I’ll be alone. Is raising my Prozac really going to help.?
April 13, 2008 at 12:20 am
I think the incapacitation in the “middle of life” has more to do with the depression than GBS specifically. I had GBS at 17. Turned 18 in a nursing home. I didn’t think I had an undue amount of depression at the time. GBS never had me thinking of suicide even when I couldn’t even lift my arms. I found losing my wife of 10 years to cancer three years ago infinitely harder and more depressing. Suicide crept into my thinking a number of times then. Thank goodness for my kids.
I count myself lucky for having GBS at 17 instead of later. I had fewer responsibilities to complicate things. My heart goes out to all of those here who have had to go through this in the “middle of life”. Not “mid-life”, but the “middle of life”. Wives, kids, jobs, mortgages, bills, argghhhhh! My hat’s off to you all.
AnonymousApril 14, 2008 at 10:18 pm
Hi All: As a professional analyst I can tell you that depression and suicidal thoughts are definitely normal following GBS. You have suffered a great trauma to the body and mind, followed by a longer or shorter period of hoping you will be better and not seeming so. Add chronic pain and PTSD and you can have a lot of depression. Depression should, in my view, be looked at as a residual, same as pain or fatigue. In fact, fatigue and depression certainly go together. You can treat depression with meds, therapy, or a combination of both. Lacking these, you can rely on a your support group, which is very important. Knowing what I do about depression and having treated others for it didn’t help me avoid it. I still face pain every day and fatigue as well and just being in a wheelchair is depressing. There are days I wonder what the next twenty years of life might mean to me given my condition and, though I don’t contemplate suicide, somedays death seems welcome. But, honestly, not for very long. I try to fill my day with things I enjoy and do the amount of work I am able and when, at night usually, fatigue and dark thoughts can appear I meditate and ponder what meaning all this has for me. And when I can find meaning I feel better. I believe everything happens for a reason and if we can search for that reason it helps us deal with trauma and losses. It is also a good idea to admit we are depressed and not try to hide it for the sake of others. Just talking about it with those we love can help.
Anyway, a longwinded way of saying depression and suicidal thoughts are not uncommon or abnormal, but should be dealt with as you might deal with other residuals. Best to all, Jeff
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