I know that feeling where you're only hanging on for others. I don't really know your situation, but for me I'm here for my daughter and my mom. The rest of my family I think would understand more.
It's so hard for us to understand why our pain that is at the core of our existence is so hard for others to wrap their heads around. It's not so hard to have empathy and compassion for people in pain.
I take Cymbalta. It had helped with my Fibromyalgia symptoms and it has helped with my depression. I don't see a therapist because the ones where I live are not good to see about chronic pain issues.
As far as keeping my spirits up, I focus on small things. Once a week my best friend comes to dinner and brings her daughter. She has been my friend for 20 years and didn't run when I got really sick. I also love to color, but use my non-dominate hand. It seems to allow my mind time to wander. I recently started drawing and teaching my daughter to take pictures. I used to read, but it hurts too much to read frequently now.
On days that I don't feel horrid, I love to cook new things and have my daughter help. She usually reads the recipes to me.
On days that I can't do much, I throw a ball for my dog, trim his nails, and brush him. He's very well behaved. I also brush my cats.
Whatever you can find to do that can bring you a happy thought or a smile, no matter what it may be can be a good thing.

*This is kind of a long post-I apologize in advance*


Hi There,
I am so sorry you are going through this right now. Depression is a word that has become so mainstream (OMG! I got so depressed when I heard Kyle asked Mandy to Prom!) that nobody really remembers to take the Clinical side of depression seriously.

I have been dealing with depression for a long time, and I find consistent therapy with a therapist you trust (you may have to try one or 2 first, but remember they work for you, so be picky), and medication helpful. It may take time to get the right mix of meds, so again patience is needed, but many Drs will RX something like valium that works immediately for 2 or 3 weeks while you wait for your medicine to start working.

OK, exercising will only work if you can manage to get out of bed (I really hate when people say things like "if you would just exercise you'd be better! Grrr..." So, I often have to break my days into tiny pieces. Here's an example of one of my To Do Lists for a really bad day:
1. Breathe In
2.Breathe out
3.Put Contacts In
4. Lay Down
5. Take a Shower
6. Lay down
7. Call a Friend
8. Eat something
9. Go anywhere-the park, walk the aisles of the grocery store, dollar store, Walmart, wherever, and stay there for 15 minutes
10.) Take a nap
11.) Congratulate yourself for making it through your list, reward your self-TV show, ice cream, haircut, etc..
12.) Make List for Next Day

Check each item off as you go and be proud of yourself for each step you take, because every step took a lot of effort on your part and you deserve a pat on the back! Your list may have more basic steps than mine or more difficult steps...it doesn't matter, the point is simply to have the feeling of accomplishment at the end of the day.

Also, I don't know what state you live in but I attended this support group in TX and made some good friends all dealing with depression for their own reasons, some like us dealing with Chronic illness...anyway, it really helped me to be around a bunch of supportive folks all dealing with depression, anxiety, motivation issues...and I finally felt like even though they didn't know much about PTC, they did know about the depth of depression I felt.

So, here's the link if you want to see if there are meetings in your area http://www.lowselfhelpsystems.org/meetings/

Again, sorry for the long post ,
Be Well, LuLu

Dear Creamcheese;
thank you so much for raising this topic. I think it is a very important one that we just don't talk about because it is a little taboo. many of us suffer in silence with these feelings but I think they are part and parcel of IIH. in fact I don't know why this symptom is not on our IIH symptom spreadsheet:
http://www.editgrid.com/user/ih_support_group/IIH_Support_Group_Symptom_List (password IIH)
it should be "wanting to die sometimes" or something like that, that doesn't imply imminent suicidality.

I think that the feelings of despair that generate the thoughts we have of leaving this earth to escape the suffering, are a normal BIOLOGICAL reaction to increased intracranial pressure. meaning I don't think this is a purely psychological phenomenon. when my ICP is lower, the feelings go away. when my ICP goes up, the feelings come back and I tell myself to ignore them because they will go away when I feel better. if you can tolerate antidepressant side effects, then they might help you. it has been shown that SSRIs can attenuate glutamate excitotoxicity in the brain, and I believe that this process with glutamate is a final common pathway for the triggers that lead to brain edema in IIH, based on my research of the literature.

what made a huge difference for me to get me to stop thinking about death every day, was treating my sleep apnea. it was mild and difficult to diagnose, so don't assume you don't have it. I didn't even snore. but treating sleep apnea I have found removes the biggest trigger I have for my ICP symptoms. that said, don't take any medication for your depression that could increase sleep apnea. valium would be a bad idea.

please keep talking to us about your feelings so we can support you. I know we all feel this way sometimes, and some more than others. I hope that your post generates more discussion that might help all of us on this forum.

Definitely, everyone here should feel comfortable enough to talk about their feelings of depression and isolation that PTC can cause. Hopefully the community and support of others will make your feel less alone. It is so hard to get understanding on the outside.

I think that it is important to note that even if your Depression is situational-meaning caused by PTC alone (no traumatic events, bad childhood etc...) after about two weeks of depressive feelings, regardless of the cause, serotonin levels will begin to drop and it is recommended that you see a psych doc for a possible DX for Clinical Depression. Clinical Depression is an Illness and there is treatment.
No one should be afraid to get help, or express their feelings here.

I also think it is great to be supportive of one another when dealing with mental health issues. However, we walk a fine line when giving medical advice, or even having a 'Want to Die List' (please take no offense Sophiasmom)

The fact is, we really do not know just how suicidal someone is...we do not know if someone else who does not post reads about suicidal ideation, though not imminent for the author, but perhaps the reader...we can never predict what just what words might accidentally trigger someone else in a fragile state.

I think saying something like "I wish I didn't wake up this morning" is one thing, but going into detail about suicidal thoughts can be tricky. Maybe someone on this board has PTSD and gets triggered, or someone else reads it, identifies with it and doesn't ask for help, or had a loved one who committed suicide. We just don't know.

DS has a board for people to speak a little more graphically if they need to
http://www.dailystrength.org/search?q=suicide

Also, we can make use of the Depression Board
http://www.dailystrength.org/c/Depression/support-group

And, if anyone is feeling ready to give up, call the National Suicide Prevention Helpline
1-800-273-TALK

Regarding Sleep Apnea- Definitely can cause problems, but usually a Primary Care Dr asks you a series of questions, refers you to a sleep specialist, then you spend the night in the hospital to be monitored,
I have sleep Apnea and my sleep specialist, psych doc, and Primary Care Doc, have all ok'd Valium, and a sleeping pill every night for me even though I use a C-Pap. I also take more than 1 anti-depressant. Again, not disregarding your post Sophia, I am just pointing out that we can really give each other some mixed up advice, simply because we are not Dr's and what is good for one patient is not good for another.

I guess what I am trying to say is I think it is best that we stay really supportive and empathetic, but never disregard suicidal ideation-encourage the hotline...we can never know if the person at the other end of the computer is truly in danger or not, and maybe we should stay away from medical advice-all of us have different Dr's and different treatments. When lots of folks post what their Dr's have prescribed it can become really overwhelming for someone just starting to seek help.

Sorry for the long post all...I did not mean to seem preachy.

As a social worker, I have worked the 1-800-273 -Talk hotline, worked with suicidal teens and volunteer online for RAINN-a hotline for victims of abuse and spent some time inpatient myself for suicidal ideation...

I can't tell you how many times parents don't take their kid seriously when they talk about dying....I would hate to see that happen here.

if you are already treating sleep apnea, then these medications might be OK. except if your PAP machine is set to a specific level based on a titration done without valium, then valium might lead to a need to increase the pressure. I suspect that those of us with OSA and IIH need to have our OSA treated perfectly, such that we need an AHI of less than 1. taking a valium might shoot you to 5 on your current settings and you might not feel so great in the morning. but only you know what works for you. I didn't think I was giving medical advice, just discussing what I know to be fact, and disclosing when what I say is my own theory. and I did not think I was disregarding suicidal ideation, but trying to put it in perspective and reassure that we all have these feelings. I think that knowing that will support others to know they are not alone so that hopefully they would not follow through on any specific plans, but keep talking to us.

Hey Sophia,
Supporting others, keeping them talking, and letting others know they are not alone is exactly what you were doing, and did a great job of it!

I saw a chance to bring up some things that might be important in the future. I meant no harm, and apologize if I hurt your feelings in anyway.

Know that I was not trying to pick apart your post-only wanting to state that when it comes to self harm, it sucks, but we can't reach through our computer screens and really see that someone is safe. In most cases we don't have phone numbers or addresses to call 911 if we suspect an emergency.

That is why I suggest that like you, we encourage, listen, support, but also give the resource of the hotline where trained professionals can do a solid assessment.

RE: Medical Advice, it is clear that you have done some major reading and research about PTC and have a lot of knowledge to share which is awesome.

Again, I was not trying to pick apart your post, just saw a chance to say that in a depression thread, too many medical opinions can really confuse someone, and we can really focus on support, empathy, and reducing isolation.

This is an area where I think boundary lines can get a little murky.

Again, I apologize if I made you feel attacked. You contribute a lot to this board and I meant no harm...I have a lot to learn from you and the research you have done.

There are some terms in your post I had to look up, so truly I did not mean to offend...you're research is very forward thinking, and I look forward to more posts.
Regards, LuLu

Thanks for your replies :) you guys are seriously the best! This is one of the only IH place that I feel like I can bring this up because like facebook is more personal and i don't want people freaking out and contacting my family or something.
I'm not even sure what is wrong with me, they mention depression but I don't know if I actually have a mh condition, if that makes sense, but its something I really want to find out because I hate feeling in the dark with medical stuff. Thanks very much for the list, I think its a great idea. I guess I will just keep seeing my therapist and hoping things get better. Like i know I don't really have a choice in this but it's just so hard to try and imagine a future feeling like this. I've been referred to a psychiatrist for better medication, so hopefully I will be able to get into him sooner rather than later.
Thanks again all xxx

I must add a hold it minute, we've been wanting a "real" MD in our ranks for years, we have one now in Sophiasmom, lets pull back the reigns on how we approach things with her, because I for one and am sure i speak for others stating I want her here, i appreciate her, the support and information, and her very thorough research and her TIME. Better than most give, i realize just as everyone else here does you take part on DS at your own will and the disclaimer reads its not to be taken as medical advice. Just because she's had the training it should not be construed as such. We as a group have delved into some deep convos about everything medically possible concerning our health and any testomony given about truths, trials, or the sort is all personal experiences, thoughts, and opinions only, even if its a learned experience.
Lastly, i remember speaking to this member about this topic awile back, she is young, and not supported for her health by anyone, thats a big blow! Being told your faking or seeking attention by school, and medical professionals is Criminal. It has been done SO many times to our members because medical morons dont understand this illness. Her parents i believe arent very suportive and given this combination it most surely could bring these thoughts, and feelings about. If it were me i would validate my feelings with a therapist, and use us for ideas and support, to include medical services such as assisting you with seeking out the right Drs. to treat the whole person, and we will even help you with seeking out financial assistance and housing because if your in a bad, negative housing situation that only complicates matters. Ignore typos pls.

Mary

Creamcheese, i want to share with you what helps me. Others may think its crazy, but i know better. This is spiritual advice, im not perfect! Im a sinner, im human!

Many on this earth today dont belive in God, or Satan. The biggest lie told in the history of humans is they dont exist. Satan is the i quote that, THE master manipulator of LIES. It is our nature to be Godly,,,, calm, not of a robate mind, hopeful, and here it is, the big drumroll, being in faith. Believing in things unseen are eternal, your soul. Your soul is your mind, your thoughts. A spirit of fear is of Satan, God did not give us the spirit of fear; but of power, and of love, and of a sound mind. Fear.....this is where the mind starts listening to the lies satan wants us to believe, and breaks down the powerful beings we are by inserting panic, anxiety, thoughts of death, sickness, and no love. Love cannot live in darkness, neither can humans.
Satans objective is to steal,,,, kill, and destroy. Light has no relationship with darkness. When i was having these thoughts, i audibally spoke Satan get out of my home, my mind, my body in the name of Jesus Christ. I turn up my music, let in sunshine, and get busy celebrating God by taking care of me and this precious life, mind, and body he gave me. If i need to cry, i do, scream, i do, laugh, i do, and pray for God to help me get better, forgive those that have hurt me, and help me live, live, live! Being a Christian is not being holy moly oh look at me stuff we se on tv, or in church. Its being real, and asking God to live in us, through us, for God.
Im so much better than i was, im HAPPY evdryday. You can be too. Its not others that make or break me anymore, i strive everyday to be productive no matter what it is, watching tv, staring out the window,, being with friends and family. For me, i always compared myself-my life with everyone else, i thought thats what is was al about. The rat race, wealth, health, beauty all of it. It took me a long time to figure it out. I held onto shit, i felt everyone wronged me, everyone hurt me somehow.
i was sick of being sick, i was sick of me, my life. I changed it, im still changing it. Changing me everyday. Thats just a small part of it, but its working.

Mary

based on the last post, IIH is Satan. we here are in the business of fighting it to our last breath.

RE: Wanting a Dr amongst our Ranks

It is awesome that Sophia is an MD!
Her posts are really fascinating and the research she does is way over my head, and when I look up the terminology I am amazed at her intelligence.

Besides tapping into Sophia's mind, we can also email any of the Dr's that work on the DS Team.

I don't know that they would have the breadth of knowledge that Sophia does, but the DS Doctors are here to answer questions on all of the boards.

We may not need them now since we have Sophia, but just thought I'd throw it out there as an FYI...

I know just what you are feeling. I truly believe that I am hanging on for my husband, kids and grandkids. I suffered from depression long before being diagnosed with PTC. Right now I am having a lot of issues and being seen by a number of doctors who seem to just keep passing me around. I look at all the medication in my cabinet and think it could all end so quickly. My pain would be gone but everyone else would be just starting or in my husband's case, his would be getting greater. I guess that is what keeps me on this earth.
Cathy

Dear Cathy;
please hang in there. we are working so hard here to find solutions. have you been tested for sleep apnea? it is so much more common than most people/docs think and it can cause depression and exacerbate/cause IIH. I know exactly what you are feeling like. it is so frustrating, but I think about how important it is to have a mother. to have a mother who loves you is the greatest gift we can ever receive. I didn't have that, so I know how important it is and the hole it leaves in your life for her to be unavailable. I just couldn't do that to my kids. I was like that for a year in 2010. but now I am so much better. there IS hope.

Hi Cathy,

It is very brave of you to continue to live for the sake of others when you feels so low. Your family is very lucky to have you with them. So many Dr's know nothing about PTC and I hate that 'Being Passed Around' feeling too.

I would ask that if anyone here lives in Cathy's area and knows of any competent physicians or hospitals to please let her know-we all know good Docs are hard to find...

I know it doesn't seem like it, but someday you will come out of the dark clouds.
Until then, be good to yourself....talk to a friendt, take a bath,
eat ice cream (universal medicine for all ailments), play with a pet or visit a local animal shelter and hang out with the puppies....anything that makes you smile for even just 5 minutes.

Keep posting...we all want to know how you are doing.
LuLu