Jump to content



Existing forum users need to log into the forums and website with their email address and password. Become a premium member to access enhanced forum features and visit our online store to view our products.

New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBook?  Our helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 

 


Photo
- - - - -

My Story/help?


  • Please log in to reply
4 replies to this topic

#1 madisonh

madisonh

    Newbie

  • Members
  • Pip
  • 3 posts
  • Gender:Female

Posted 31 January 2012 - 11:08 PM

Alright. Here goes nothing.
When I was 5 I was diagnosed with OCD (compulsively rubbed my hands when I wasn't allowed to organise/adjust/follow through on compulsions. My hands would bleed. It wasn't pretty.) I was put on prozac until I was diagnosed with ADHD. We then switched to Adderall XR and anafranil. I stopped taking those when I was 16 because I wanted to learn how to cope with myself by myself. It was definitely hard and I worked with many CBT's to get everything relatively normal.

I've been off meds for almost 2 years (I'm nearly 18). I'm a college freshman.

In early November I stepped into my first major relationship. I'd known the guy for almost 3 years and we were best friends. He's my age (well 8 months older but eh. Negligible.) The step into "relationshipdom" came pretty naturally. He's perfect for me. One helpful thing for you to know is that he does live 500 mile away. We talk on the phone every night for 1-2 hours. We vider chat 2ce a week AT LEAST usually for a couple hours. We see eachother roughly every 6-8 weeks usually for 2-3 days at a time. It is long distance but he's very supportive. Etc great guy you know the story.

But recently my OCD has been taking a turn for the worst with the relationship. I constantly question if I actually like him. I constantly question if really love him. I consider breaking up with him on a weekly basis (I never actually have, thank the lord). I debate weither or not he actually loves me or if it's all contrived. I doubt I'm good enough for him. It's not just thinking about these things either. It's literally going over them multiple times and worrying and cycling and convincing myself they're reality. I realise all these things are irrational, but I can't move on from them. They keep coming back. One day it's perfect and the next I'm worrying I made the wrong decision giving up my best friend for "love" or worrying I'm not good enough.

Little things bug me. Like when he uses words like "probably" and "maybe" when I ask him if things are happening. When the "maybe"'s and probably"'s go wrong I literally can't process it and I break down. When things with us in general go wrong I can't get over them. I dwell on them. It's like I become this different irrational person. I stop answering his texts and phone calls just to "get him back" for what he did. When I get in these moods I also can't seem to get over them. I try rereading nice texts he's sent or listening to the voice mails I have saved, but it doesn't work. I feel so numb and bitter. Even talking to him directly usually doesn't help. It's like I need to "get back" at him or have him apoligise before our relationship can go back to normal.

When I do move on after these moods, I always feel so guilty. I remember what a good guy he is and feel so badly and like a horrid person. But when I'm in these moods I can't seem to move on or remember what a wonderful person he is. He's very understanding and we're both working to make it work etc. Luv luv luv.

I'm in the "guilty" stage of this cycle right now. The joys. The cycles usually last about a week and then it starts all over again. When I am feeling anxious about something that is happening, I always try to talk about it first, but usually it happens too fast. I also downplayed what he does a lot. He skips out of "skype dates" a lot. Which is frustrating for me because I need to have that order otherwise I look my mind. I also visit him way more than he visits me (mostly due to transportation stuff) but it still causes me much grief.

Obviously, it's getting pretty out of hand. How do other people deal with their relationship and OCD? Especially long-distance ones? Has anyone else had similar situations/experiences/thought processes? Share experiences? Share advice? Share stories? Just share something? I'm getting to the point where I don't know if this will last if my behavior continues, but I don't know how to stop it. Even with my CBT mind training I can't seem to curb my obsessive and compulsive acts. Please please please with sugar on top!


#2 MamaOnAMission

MamaOnAMission

    Advanced Member

  • Members
  • PipPipPip
  • 432 posts
  • Gender:Male

Posted 01 February 2012 - 10:05 AM

Alright. Here goes nothing.
When I was 5 I was diagnosed with OCD (compulsively rubbed my hands when I wasn't allowed to organise/adjust/follow through on compulsions. My hands would bleed. It wasn't pretty.) I was put on prozac until I was diagnosed with ADHD. We then switched to Adderall XR and anafranil. I stopped taking those when I was 16 because I wanted to learn how to cope with myself by myself. It was definitely hard and I worked with many CBT's to get everything relatively normal.

I've been off meds for almost 2 years (I'm nearly 18). I'm a college freshman.

In early November I stepped into my first major relationship. I'd known the guy for almost 3 years and we were best friends. He's my age (well 8 months older but eh. Negligible.) The step into "relationshipdom" came pretty naturally. He's perfect for me. One helpful thing for you to know is that he does live 500 mile away. We talk on the phone every night for 1-2 hours. We vider chat 2ce a week AT LEAST usually for a couple hours. We see eachother roughly every 6-8 weeks usually for 2-3 days at a time. It is long distance but he's very supportive. Etc great guy you know the story.

But recently my OCD has been taking a turn for the worst with the relationship. I constantly question if I actually like him. I constantly question if really love him. I consider breaking up with him on a weekly basis (I never actually have, thank the lord). I debate weither or not he actually loves me or if it's all contrived. I doubt I'm good enough for him. It's not just thinking about these things either. It's literally going over them multiple times and worrying and cycling and convincing myself they're reality. I realise all these things are irrational, but I can't move on from them. They keep coming back. One day it's perfect and the next I'm worrying I made the wrong decision giving up my best friend for "love" or worrying I'm not good enough.

Little things bug me. Like when he uses words like "probably" and "maybe" when I ask him if things are happening. When the "maybe"'s and probably"'s go wrong I literally can't process it and I break down. When things with us in general go wrong I can't get over them. I dwell on them. It's like I become this different irrational person. I stop answering his texts and phone calls just to "get him back" for what he did. When I get in these moods I also can't seem to get over them. I try rereading nice texts he's sent or listening to the voice mails I have saved, but it doesn't work. I feel so numb and bitter. Even talking to him directly usually doesn't help. It's like I need to "get back" at him or have him apoligise before our relationship can go back to normal.

When I do move on after these moods, I always feel so guilty. I remember what a good guy he is and feel so badly and like a horrid person. But when I'm in these moods I can't seem to move on or remember what a wonderful person he is. He's very understanding and we're both working to make it work etc. Luv luv luv.

I'm in the "guilty" stage of this cycle right now. The joys. The cycles usually last about a week and then it starts all over again. When I am feeling anxious about something that is happening, I always try to talk about it first, but usually it happens too fast. I also downplayed what he does a lot. He skips out of "skype dates" a lot. Which is frustrating for me because I need to have that order otherwise I look my mind. I also visit him way more than he visits me (mostly due to transportation stuff) but it still causes me much grief.

Obviously, it's getting pretty out of hand. How do other people deal with their relationship and OCD? Especially long-distance ones? Has anyone else had similar situations/experiences/thought processes? Share experiences? Share advice? Share stories? Just share something? I'm getting to the point where I don't know if this will last if my behavior continues, but I don't know how to stop it. Even with my CBT mind training I can't seem to curb my obsessive and compulsive acts. Please please please with sugar on top!



#3 meckert

meckert

    Member

  • Members
  • PipPip
  • 15 posts
  • Gender:Female
  • Location:Ohio

Posted 02 February 2012 - 07:28 AM

Let me first say that I do not have OCD so I can not say that I know what you go through...because I do not. However, from reading your story... I think maybe you are simply not ready to settle down. I think you nailed many other people's stories in there lives esp dealing with long distance relationships. LDR are very hard and stressful! I think many people experience the same fears, high, lows that you do. I am very happily married, and some of the things you were saying ring so true in my life. The annoyances, the doubts,the I'm not good enough, then talking yourself back to reality etc. I can relate. I have severe ADD, and some OCD tendencies but I certainly do not suffer how you do.
Just evaluate the relationship, is this someone who you really love, want to spend the rest of your life with? I have dated a lot of really great guys, some who I knew were not the "one" even if at the time I wanted them to be. Strong relationships are grounded in trust. If you don;t have that, it will never work. You'll end up pushing him away. I don;t mean to sound negative, I'm only saying this b/c I wish you success. If it really is the OCD taking over, then consider counseling with your partner. So that he can better understand your feelings, and can make a conscious effort to make you feel better about your relationship. All the best to you! No matter what anyone will ever tell you, even the best marriages are hard work.

#4 tpotter

tpotter

    Advanced Member

  • Members
  • PipPipPip
  • 1,781 posts

Posted 03 February 2012 - 11:20 AM

Alright. Here goes nothing.
When I was 5 I was diagnosed with OCD (compulsively rubbed my hands when I wasn't allowed to organise/adjust/follow through on compulsions. My hands would bleed. It wasn't pretty.) I was put on prozac until I was diagnosed with ADHD. We then switched to Adderall XR and anafranil. I stopped taking those when I was 16 because I wanted to learn how to cope with myself by myself. It was definitely hard and I worked with many CBT's to get everything relatively normal.

I've been off meds for almost 2 years (I'm nearly 18). I'm a college freshman.

In early November I stepped into my first major relationship. I'd known the guy for almost 3 years and we were best friends. He's my age (well 8 months older but eh. Negligible.) The step into "relationshipdom" came pretty naturally. He's perfect for me. One helpful thing for you to know is that he does live 500 mile away. We talk on the phone every night for 1-2 hours. We vider chat 2ce a week AT LEAST usually for a couple hours. We see eachother roughly every 6-8 weeks usually for 2-3 days at a time. It is long distance but he's very supportive. Etc great guy you know the story.

But recently my OCD has been taking a turn for the worst with the relationship. I constantly question if I actually like him. I constantly question if really love him. I consider breaking up with him on a weekly basis (I never actually have, thank the lord). I debate weither or not he actually loves me or if it's all contrived. I doubt I'm good enough for him. It's not just thinking about these things either. It's literally going over them multiple times and worrying and cycling and convincing myself they're reality. I realise all these things are irrational, but I can't move on from them. They keep coming back. One day it's perfect and the next I'm worrying I made the wrong decision giving up my best friend for "love" or worrying I'm not good enough.

Little things bug me. Like when he uses words like "probably" and "maybe" when I ask him if things are happening. When the "maybe"'s and probably"'s go wrong I literally can't process it and I break down. When things with us in general go wrong I can't get over them. I dwell on them. It's like I become this different irrational person. I stop answering his texts and phone calls just to "get him back" for what he did. When I get in these moods I also can't seem to get over them. I try rereading nice texts he's sent or listening to the voice mails I have saved, but it doesn't work. I feel so numb and bitter. Even talking to him directly usually doesn't help. It's like I need to "get back" at him or have him apoligise before our relationship can go back to normal.


When I do move on after these moods, I always feel so guilty. I remember what a good guy he is and feel so badly and like a horrid person. But when I'm in these moods I can't seem to move on or remember what a wonderful person he is. He's very understanding and we're both working to make it work etc. Luv luv luv.

I'm in the "guilty" stage of this cycle right now. The joys. The cycles usually last about a week and then it starts all over again. When I am feeling anxious about something that is happening, I always try to talk about it first, but usually it happens too fast. I also downplayed what he does a lot. He skips out of "skype dates" a lot. Which is frustrating for me because I need to have that order otherwise I look my mind. I also visit him way more than he visits me (mostly due to transportation stuff) but it still causes me much grief.

Obviously, it's getting pretty out of hand. How do other people deal with their relationship and OCD? Especially long-distance ones? Has anyone else had similar situations/experiences/thought processes? Share experiences? Share advice? Share stories? Just share something? I'm getting to the point where I don't know if this will last if my behavior continues, but I don't know how to stop it. Even with my CBT mind training I can't seem to curb my obsessive and compulsive acts. Please please please with sugar on top!


Madison,

Given that you are a college freshman, and presumably living in a dormatory, not to mention around a lot of people every day, I would suspect that you may be sick, or got sick with sometihng (there's a lot of strep and mycoPlasma pneumonia going around all over the country right now.) I suspect that you might have PANS (PANDAS), which is post-infectious autoimmune issues. One of the very major symptoms is OCD, and those of us who have children with it, as well as the doctors who are actually treating it, now realize it is way more common than anyone ever thought. We also know that it is not always triggered by strep, but can be triggered by strep, staph, lyme, pneumonia, mycoplasma pneumona, viruses, flu, allergies etc. Additionally, once you've gotten it, any other infection and/or allergies can trigger it.

Another thing to ponder is, did you get any immunizations this year...flu, meningitis, gardisil, etc? If you already had PANS (which you may have since 5 years old), these immunizations could trigger a relapse as well, plus if you were both exposed to infection AND had the vaccinations...well you probably know what I'm thinking.

There are 2 additional forums on Latitutudes...PANDAS/PITAND (most are starting to call it: PANS...Pediatric Acute-Onset Neuropsychiatric Syndromes), and Lyme. I would suggest that you look through both of these, if you want more information/doctors who actually know what to test for and how to treat, and any other questions, you can also PM me.

Good luck. I hope this all works out for you. He sounds nice.

#5 minimaxwell

minimaxwell

    Advanced Member

  • Members
  • PipPipPip
  • 240 posts
  • Gender:Female
  • Location:Southborough,MA
  • Interests:PANS/PANDAS OCD

Posted 15 March 2012 - 06:04 PM

I agree with Tpotter. Good luck!
DD18 undiagnosed PANS for 10yrs. Dx 1/12. Had 2 lVlG's 80% better!
DS 14 Happy and healthy but has Celiac.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users