Narcolepsy And Ocd
Posted 30 September 2008 - 12:22 AM
Posted 30 September 2008 - 08:29 AM
First of all, it takes a lot of courage and self-examination to come to this website at all.. and for you to post so honestly about what you are experiencing is very brave -- thank you for opening your heart to us.
Second, please know that you're not alone. Even though Narcolepsy affects each of us in a different way, there are people out there who are struggling silently with all sorts of other situations right alongside with N and Cat.
My husband has suffered from almost-debilitating anxiety since he was a child. He has described it much the same way that you have in your post -- racing thoughts, inability to make even a simple decision, checking things over and over, thinking that every choice will lead to a catastrophe, etc. Two years ago, his anxiety was so bad that he was unable to work without shaking uncontrollably any time a decision came up, and he would sit in the office for hours at a time just surfing the internet because he couldn't get his thoughts to focus on anything. He would play video games at home because it would keep his mind off of all of the racing thoughts, sort of an escape. Every possible decision ended up with him in jail or dead, the worst-case scenario.
There are some things that have helped him get back to a place where he is able to work and be a husband again. First, he got a book called "The Anxiety and Phobia Workbook" by Edmund J. Bourne. This is a workbook that actually has exercises that you can do (with a friend or support person) to help learn techniques to get you out of that cycle of anxiety causing more anxiety. He didn't need every chapter, but he did go through those that he needed. Second, although it was embarrassing, he started going to a mental health professional to talk about what he was experiencing. We contacted a number of medical schools in the area and asked the chairs of their Psychology department who they would recommend to see for severe anxiety, and one particular Psychologist's name kept coming up. He called her and has been seeing her ever since. She uses a type of therapy called "Cognitive Behavioral Therapy" to help him become aware of how he is reacting in anxiety-producing situations, and to help him learn how to change his reactions. Third, he couldn't have done it without medication. The Psychologist recognized that he needed pharmaceutical support and referred him to a Psychiatrist for medication management. That part has been the hardest, because different drugs work differently for different people, but he has said that certain drugs help quiet all of the thoughts in his brain to allow him to focus.
I (and everyone else here) have had situations where I don't trust my own judgment or I second-guess myself because of the memory issues caused by Narcolepsy. So that is also understandable, too. But if you are "milking it," it could be helpful to explore the reasons for that with a trusted professional.
Because you are dealing with N alongside your OCD and anxiety, it would be most important for you to find a mental health professional who specializes in dealing with people who have medical conditions. If you are in the United States or Canada, you can do a search on the www.psychologytoday.com website and find a doctor that specializes in "anxiety or fears," "ocd," or even "chronic pain or illness" -- you might want to do all 3 searches and see if there is one or two doctors who come up in the results every time. It may also be possible that the doctor you are seeing for your Narcolepsy might have a professional referral that they can offer. You don't have to go into detail, just tell your doctor "I have been thinking about seeing a mental health professional to talk more about how this affects my life, do you have a Psychologist that you can refer me to?"
I feel for you, and the only advice that I can give is that you maintain absolute honesty with your mental health professional, just like you have with us here. That is the only way that you can truly get help. Please keep coming here and keep sharing, because we care about you and some way or another all of our experiences are common threads.
Take care of yourself,
Posted 30 September 2008 - 10:04 PM
I want to second everything that Kimberly said in her post. I am deeply impressed by your honesty here. I know from my own experiences that it is incredibly difficult to share in the way that you have here. Please look for a mental health professional. While it may feel embarrassing initially, I know from my own therapy sessions that nothing is more helpful in my life. Sadly, our society feeds a line of garbage about "making it alone." My therapist is vital to living a more healthy life. I also see a psychiatrist who guides me with my anti-depressants. You may know this, but an anti-depressant may also help with your cataplexy. While the chemical piece is huge, the talk therapy is also a tremendous benefit for me. I will definitely be rooting for you. No one is more important than you are. Be good to yourself. As for the OCD, I only have moderate anxiety, but have glimpsed OCD through a handful of my own issues and the severe OCD of one of my favorite students. She is brilliant, but gets "stuck" while reading. Rarely, she manages to finish a book on her own. Often, her dad has to read to her so she can get her schoolwork done. I can't even imagine how frustrating and debilitating OCD and narcolepsy must be together. Please continue to post. I look forward to hearing more about your progress.
Posted 01 October 2008 - 01:58 AM
I'm really happy for you. I stupidly would not allow my doctor to put in my medical record that I was disabled, and now I cannot get disability because I have not worked enough in the past few years.
" esp. when I'm not on my meds I feel like I have lost all power to do anything. I am so tired I feel like I am drunk."
My doc is bad about getting scrips in on time. Once when I had no meds I took my two year old outside and only walked about 1 1/2 houses away and fell on the ground. I felt so disoriented and was terrified because my son ran off and was only one yard away but I couldn't get up to get him. I somehow crawled to where he was and tried to make a game of what was happening to me (which I regularly have to do). Out of embarrassment, I didn't want anyone to see me, but out of necessity, I prayed that someone would and that they would come help. Of course that did not happen.
"I feel like this has literally destroyed my life."
I completely empathize with you, and I can't offer any help with this.
" Although I have never formally been diagnosed with OCD i know that I have it, but I am too embarrassed to see a doctor over it."
I recently realized that I am a hoarder (sp?). Embarrassment? Read my earlier posts - I refuse to go to a doc unless something is really wrong. Other people embarrassment? OMG - I pulled out so many boxes of junk (even found a pair of jeans that I wore in the 8th grade) and dumped everything in my bedroom to make sure that I went through it all once and for all. it took 2 months. In the mean time, we had a contractor over that went in my room and he was so grossed out that he wouldnot look at what i wanted to show him.
"I have the most horrible, racing and uncontrollable thoughts anyone could imagine."
I can. I tell myself that it's my mind trying to cope with my worrying in the sickest way. I have horrible thoughts. Thoughts that I wish that I didn't have. After a couple decades of this, all I can tell you is that each and every time that you realize that you're doing this, make yourself stop and say that this is not something that you want to happen. Focus on the fact that you don't want it to happen and then make yourself think something positvie.
"For the past several years I have been very depressed."
Who wouldn't be if they had to face what you're going through? But you do have control over you. It may take medication to give you this control, but it can be done. Just DON'T give up. It took me years, and it was a horrific journey. I feel for you.
"I couldn't go to college after graduation even though I graduated with Honors bc I couldn't drive or hardly function half the time."
There are ways to get around this.
"Then 2 years ago on Oct.11, 06 my brother who was only 28 was killed in a car wreck. I didn't think I would ever be able to move on."
I really hate to say this, and please don't take it as a flippant statement, but really horrible things happen and it is life. When I was a kid my dad was crazy. Then my mom had her neck broken. Then my daddy had brain surgery. Then..... I have such a long list. I really had no help from anyone because they all thought that I was crazy (thanks to Narcolepsy - hallucinations, exhaustion) or over reacting. Now I'm older and I realize that most people don't experience non stop mentally draining situations at such a young age and they totally cannot relate. And you have moved on. You didn't die. I don't mean that sarcastically. I'm totally serious. There were times that I just didn't think I could live another minute, but I did. It took years and years before I learned what was wrong wtih me and found dcotors that could help me. I lived all that time as an absolutely miserable person. You have hope. You have a diagnosis that you and your doctors can work with. Do NOT be ashamed to the point that you don't get help because you will continue in a spiral downward into a personal nightmare that can only be equated with a living Hell that will result in either your death or a hospital stay.
"standing in Wal-Mart half the night because I can't decide which lipstick to buy, not bc I am a female but bc I obsess for a hour which one will work."
I never thought of this as OCD, but yeah, me, too. You are NOT alone.
"very low self esteem
I make myself sick
have very repetitive thoughts
I feel like I will vomit.
My cataplexy attacks has had an enormous impact... I didn't know how to stop them."
Go to the doctor and get appropriate meds. If your doc isn't doing it, then change doctors.
"They stuck an IV in my neck to give me narcan to make me vomit bc they thought that I was high although there was a doctor telling them what was wrong with me."
Something is not right about this statement, or your doctor is a moron for not getting their licenses revoked. This is the EMT equivalent of medical malpractice. An EMT should do what a doctor says.
"Since this event, I have worried so much that they were right... it scares me to think that maybe I have overreacted at times."
You said that your doc told them otherwise, your doctor knows about this far more than EMTs. Choose to believe the guy with the medical degree on his wall. And yes, you do have the power of choice.
"It's almost like I wanted to have an attack and get it done and over with."
After what you've been through, that's totally understandable. I've been so nauseated before that I prayed to vomit.
"I feel like I should tell someone this bc I am obsessing over this so much bc I feel like such a bad person. and I keep getting this horrible thoughts that I have cheated the government some way even though I was definately approved for SSI bc of doctors and tests I've been thru. I feel like if I ever said anything about this I would go to jail, for false information, even though I never gave a specific time or date for anything. But I feel like they would see it as I've lied in some way and punish me. This is why I joined this forum bc I wanted to get other's opinions."
A forum is not going to be the answer to this. You MUST discuss this with you doctor. You have very real physical health issues, but you have obsessed them into a psyciatric problem ( I don't know this, I'm not a doctor). I do not mean that negatively. Mental illness is very real, and it does not have to be permanent in all situations. I think you can be treated effectively for this, but you MUST see a doctor that will help you.
"I am so ashamed over all of this."
Even knowing that what I have is a chronic neurological disease, I am still ashamed of myself.
"I am such an honest person, I am just so scared that I have done something wrong, and I have really been praying about all of this."
I started praying a couple of decades ago. Things did get better, but it took years. It took going to the right doctor, too.
"I can't speak at all during the episode but sometimes afterwards it's like I don't want to speak. I don't want anyone to talk to me or be around me. like stubborness or something."
When I have cataplexy, I can't do anything because I feel like I'll pass out. Even hearing someone else talk expends my energy. You're not being stubborn. It's very real.
"Someone please help me...I feel like I am losing my mind."
If you don't get professional help from your doctor and take meds for this, you will. I speak from experience, not negativity.
Posted 02 October 2008 - 07:02 PM
Posted 02 October 2008 - 11:27 PM
Posted 03 October 2008 - 03:58 PM
Posted 03 October 2008 - 08:56 PM
When I hit my lowest, one of the best things that helped me was to have someone to actually speak with (well, other than finding out what was going on with me.) It was EXTREMELY important for me. I needed to have someone that would just let me ramble about every little crazy detail, sometimes over and over. Only because I know how important it is to have this and because I know what it's like to get stuck in a really scary personal place, you can contact me via my email address listed in my personal profile if you'd like. I had only one person that did this for me, and she was only there at the very end. It would have been nice if she could have been there much earlier for me. I truly feel for you. I don't know exactly what you are experiencing, but if it's anything like what I had to go through then I know it is a living nightmare. If you are at all like me, then I know that in order to say everything about yourself and your thoughts the way that you did then you are to the point of being desperate. That is the reason why I stressed getting to the right doctor and getting meds.
In my previous post I stated that I had a contractor come to my house for some work. This poor guy has actually been super nice and has spent some time talking to me about just stuff. Yesterday he mentioned that his daddy had been dx'd w/ MS years ago. Because I know his mother, I asked if he thought that she would mind if I spoke with her. (why - this past christmas my mom n law was here for 3 weeks. she was hospice nurse for many years. she mentioned that a lot of my symptoms resembled ms patients.) I have needed someone to talk to for so long. oh, man, for so long. We live in a very remote part of the US. There are no support groups for anything. I have yet to met another person w/ N. Whatever is going on w/ me is heavily impacting my life and my husband's and my children's. I have needed, desperately, to talk to someone that is experiencing what I'm going through. Today I stopped by this lady's shop and let her know what was going on, and being the sweet person that I knew that she was, she has offered to spend time talking to me. I am excited to be able to ask questions about what her husband has gone through. Anyway, I'm just trying to explain to you that I know what it feels like to need more than what is currently available, the need to open up, the need to cry on someone's shoulder. I have to take my son's friend home right now - gottal go