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Looking to connect with other affected college students

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Hi there. I'm a 24 year old undergraduate student. I've struggled with OCD and ADHD since childhood, but ~two years ago new symptoms appeared and the severity spiked, all very suddenly, and I've been basically non-functional since. Looking for other students to talk to for support. It's been difficult for me to find anyone who can relate to what I'm going through, especially near my age. 

I am currently in my 7th (yes, 7th) year of undergrad. I received one degree, but I am going for something completely different now. However, I'm struggling, and I don't know if I should keep trying, take a break, give up, or what.

I used to be an exceptional student. I had not gotten anything less than a 4.0 in a class after my freshman year. I struggled with OCD an ADHD then too, but not like this. I was able to manage my classes, social life, etc. 

Until ~2 years ago. Everything suddenly went down hill. I cannot organize my life let alone my classes. I spend more time alone in my room pulling out my hair, blinking my eyes, trying to figure out what's wrong with me (all of these I had never had problems with before), than I do studying, socializing, or enjoying myself. In the past year, I've failed two classes and gotten a 2.0 or 2.5 in the rest. I had never even come close to failing a class before all this happened... 

I don't go to class. I don't read the book. I try to learn all the material the day before the exam. And then I get mad at myself for failing. I've wasted so much money and time and seriously fucked up my GPA. 

But I love what I'm studying. And I know that I could succeed if I could put in the time. I want nothing more than to make this happen. So each semester I tell myself that I will be better this time. I won't procrastinate. I won't give into my OCD. I will follow the studying schedules I make. I will wake up to my alarm and I will go to class. I will wake up from this nightmare. I will be "me" again. 

I can picture myself doing these things. I know the "me" two years ago would be able to do it. 

But I continue to fail. I continue to sleep through class. I continue to pull out my hair, squeeze my face, blink my eyes, hold my breath. I had every intention of doing it right this time. But I keep finding myself trying to learn the entire unit the night before the exam, yet again. I ask myself, where did that time go? What did I do instead? And honestly, I don't know the answer to that. I have been doing nothing else. Just sleeping, pulling, checking, etc. Nothing worthwhile.

So I ask myself if I should keep trying. I'm signed up for fall classes. And I'm again able to picture myself doing it right this time. It seems like it will be so easy to wake up tomorrow and return to the old me.

But I can't afford to waste another semester of student loans. So my mind is telling to drop out. I can't continue while I am ill. But what happens when I drop out? Probably nothing. I'll probably continue my terrible new lifestyle of nothingness, except now I won't be adding to my pile of debt, or moving in any direction whatsoever. If I drop out, I will have nothing motivating me. I'll just be stuck in this funk of nothingness. 

I want my life back. This is not me, it never was. How can my memory of myself be so vivid and real, so within my reach, yet so impossible to grasp? 

I do continue to have hope, and I refuse to give up. I changed so dramatically and suddenly once before, so maybe I am capable of changing again, to who I used to be. 

Oh, yeah, I forgot to mention that I have somehow managed to hide nearly all of this from my friends and the rest of the world. Nobody has a clue that I've changed or that I'm struggling. I couldn't expect anyone to understand. I would much rather tell someone who might at least remotely get it. 

I do have doctors I see, and supportive family and friends I could turn to. So I am ok and I am safe. But I do hope that I can find someone who I can relate to. 

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Firstly, I am sorry you are suffering so.  It must be beyond painful. I have a DS 24.  He was diagnosed with sudden onset of  tics and OCD at 6 but now we know it was PANDAS bc his younger bro has it too. Our DS24  growing up did OK as long as he ate no gluten and dairy plus a few other inflammatory foods (PLUS low dose SSRI's). But at 20 yrs old( being a straight A  student always as well)  he just fell apart . OCD thru the roof along with anxiety. He started hyper focusing on getting A's for fear of failing, everything began to  overwhelm him and he began sleeping 15 hour days.  I hired a great nutritionist, a therapist, immunologist  and a psychiatrist. Only after I had him thoroughly checked medically for adrenal, thyroid and other possible causes, did we go more alternatively. How is your thyroid??

He pulled out of school and kept one class.  He began a multi tiered approach.  (Exercise, proper sleep, increased his SSRI, increased pure water, removal of inflammatory foods that can cause mental issues , added specific supplement's and some herbal tinctures that helped calm his nerves,plus lots of prayer) We found out that he had LYME and a co infection Babasia.  Lyme's exposure for PAN's kids can really rock their world. We treated with specific herbs. 

He now is able to take two classes at a time.  It is a mini Ivey school so not easy but he just modified his life greatly.  He will now be done at 26 but its OK.  His family is his support system and his amazing therapist.  YOU are NOT an island and there is NOTHING to be ashamed of.  If people don't get it completely that's OK but  find a few that do and lean on them. THIS WILL GET BETTER> NO SHAME!!!  everyone has something in life and this is yours.

Sometimes it is a matter of an infection that rocked your world or perhaps your schedule just got too much for your nervous system and your OCD showed up big time.  Get your nervous system down by cleaning out ur body, getting good sleep,  simplifying your life  for a while and BREATHING!! For us it's been 4 years of 'operation lay low" .  Our son does get very frustrated at times but he utilizes the network of people that have carefully been put in place, he started taking better care of his temple and began to realize that there are many ways to DO LIFE!   Thank you for sharing your story and I am so impressed with you going to school through all of this. Good grades or not it shows that you are a fighter!! Amen to that!

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Hi!

So sorry you're going through this, and I can appreciate your desire to connect with others who find themselves in a similar situation.  That being said, though, I worry a little bit that were you to find someone going through similar challenges right now, that you might not find yourself even further distracted and perhaps indulge in the OCD even more, supported by the similar tendencies in your newfound fellow traveler? 

I say this as a mom of a college student who, having effectively "beat" PANDAS, continues to struggle now and again with anxiety and OCD, depending upon the circumstances.  But much of his motivation for moving on and through the challenges that remain has been provided by his friends and relationships that are "normal," aka, not similarly anxiety or OCD-ridden.  They help him distinguish between the thoughts that can plague him from time to time and the thoughts more typical of his peer group and encourage him to let things go more readily.  As a result, he really doesn't want to spend time reliving his issues or dissecting and analyzing them.  He just wants to continue moving forward toward a "normal" life.

I also say this as a "support person" for a guy about your age who reached out to me several years ago via this forum, and we struck up a phone and email correspondence as he was struggling through finding effective treatment for his PANDAS/OCD and working through being functional in college, in his relationships, etc.  I tried to be a support and sounding board for him, but I got the impression much of the time that I was just aiding and abetting his OCD, giving it something to cling to, because he could call me and further perseverate and mis-prioritize spending his time talking with me/complaining to me, rather than moving on with his life.  But as his medical and mental treatment programs became more effective, he had less and less need for me, and now I've not heard from him for a few months . . . the longest stint of silence in quite some time.  But in our last exchanges, I could tell he was feeling better, more capable, more "normal," and finding his way through some stressful situations without resorting to hefty OCD behaviors.

You've said that you have good doctors, friends and a supportive family, etc. so I find myself wondering, is it that you don't want to somehow "burden" them with your troubles?  Or is it that you think they just don't get what you're currently going through?  Or is it that they, maybe similarly to our family, have been trained/educated to not aid and abet the OCD by catering to it, and therefore you sometimes feel a sort of rejection or lack of understanding because they don't support your fears and anxieties to the extent you feel they need to be supported?

And, in terms of treatment, have you been recently checked for infections and/or inflammatory markers that could be contributing to the strength of the OCD now?  Have you tried anti-inflammatory responses -- change in diet, supplements, etc.?  Are your care providers supportive with respect to investigating these contributors and/or ruling them out or treating them?  Do you see a therapist on a regular basis?  From what we, and many others on this forum have experienced, effectively managing anxiety and OCD, even as an older, more experienced person, can be very difficult if not impossible if an underlying infectious or other immunological cause is not effectively dealt with; unfortunately, all the CBT and ERP, or friend or family support, in the world has a hard time taking effective hold if your body has lodged an assault against your brain.

I can tell from your story that you are strong and persistent, great qualities for a person who faces these sorts of challenges.  I feel certain you will get through this.  I wish you all the best.

 

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Alyssa, I'm in nearly the exact same position. I have a retrospective diagnosis of OCD and ADHD. However, It does very little to explain the sudden acute exacerbations of absolute and total dysfunction. Unfortunately in the past, I haven't been able to hide my situation very well or even explain it. I'm 24 and study mathematics at uni, but there's very little chance of maintaining this position unless I can get some solid results fast. I've only just recently consulted with Dr K who's managed to tie the pieces together and suggest a possible diagnosis of PANDAS/PANS. He's provided a letter to my G.P (UK) with the recommended diagnostic and treatment protocols. I just hope I see some follow through. At my age, going on so long feeling so misunderstood, I'm worried about permanent brain damage. I know everyone's different. I hope you things get a lot better for you, keep me posted on your progress. All the best.

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Thank you all for your responses, I am so glad to have found this support outlet. I apologize for my delayed response. I'm responding to each of your posts below in pink :)

On 6/21/2017 at 8:37 AM, HopeinHIM said:

Firstly, I am sorry you are suffering so.  It must be beyond painful. I have a DS 24.  He was diagnosed with sudden onset of  tics and OCD at 6 but now we know it was PANDAS bc his younger bro has it too. Our DS24  growing up did OK as long as he ate no gluten and dairy plus a few other inflammatory foods (PLUS low dose SSRI's). But at 20 yrs old( being a straight A  student always as well)  he just fell apart . OCD thru the roof along with anxiety. He started hyper focusing on getting A's for fear of failing, everything began to  overwhelm him and he began sleeping 15 hour days.  I hired a great nutritionist, a therapist, immunologist  and a psychiatrist. Only after I had him thoroughly checked medically for adrenal, thyroid and other possible causes, did we go more alternatively. How is your thyroid??

I am so sorry to hear how difficult it has been for your DS. I am glad that he has you to support him. I haven't had my thyroid checked, but my mom and aunt both suffer from hypothyroidism, although, they did not experience this until much older than I currently am, and both were post-pregnancy. I should get that checked out though, since I do exhibit some of the symptoms of low thyroid hormone (always cold, sleeping wayyyy more than normal). But I haven't had any problems with losing weight, if anything the opposite.

He pulled out of school and kept one class.  He began a multi tiered approach.  (Exercise, proper sleep, increased his SSRI, increased pure water, removal of inflammatory foods that can cause mental issues , added specific supplement's and some herbal tinctures that helped calm his nerves,plus lots of prayer) We found out that he had LYME and a co infection Babasia.  Lyme's exposure for PAN's kids can really rock their world. We treated with specific herbs. 

He now is able to take two classes at a time.  It is a mini Ivey school so not easy but he just modified his life greatly.  He will now be done at 26 but its OK.  His family is his support system and his amazing therapist.  YOU are NOT an island and there is NOTHING to be ashamed of.  If people don't get it completely that's OK but  find a few that do and lean on them. THIS WILL GET BETTER> NO SHAME!!!  everyone has something in life and this is yours.

I am so glad to hear how well he is doing. That gives me a lot of hope. You're right that we all have something in life. It's important to remember that and to stop comparing yourself to others.

Sometimes it is a matter of an infection that rocked your world or perhaps your schedule just got too much for your nervous system and your OCD showed up big time.  Get your nervous system down by cleaning out ur body, getting good sleep,  simplifying your life  for a while and BREATHING!! For us it's been 4 years of 'operation lay low" .  Our son does get very frustrated at times but he utilizes the network of people that have carefully been put in place, he started taking better care of his temple and began to realize that there are many ways to DO LIFE!   Thank you for sharing your story and I am so impressed with you going to school through all of this. Good grades or not it shows that you are a fighter!! Amen to that!

Very true, breathing, mindfulness, and acceptance have helped me tremendously. Still working on them all of course. It's difficult to accept the pace I need in a world that seems to want to set it for me. Step by step. :)

 

On 6/21/2017 at 11:16 AM, MomWithOCDSon said:

Hi!

So sorry you're going through this, and I can appreciate your desire to connect with others who find themselves in a similar situation.  That being said, though, I worry a little bit that were you to find someone going through similar challenges right now, that you might not find yourself even further distracted and perhaps indulge in the OCD even more, supported by the similar tendencies in your newfound fellow traveler? 

I say this as a mom of a college student who, having effectively "beat" PANDAS, continues to struggle now and again with anxiety and OCD, depending upon the circumstances.  But much of his motivation for moving on and through the challenges that remain has been provided by his friends and relationships that are "normal," aka, not similarly anxiety or OCD-ridden.  They help him distinguish between the thoughts that can plague him from time to time and the thoughts more typical of his peer group and encourage him to let things go more readily.  As a result, he really doesn't want to spend time reliving his issues or dissecting and analyzing them.  He just wants to continue moving forward toward a "normal" life.

I also say this as a "support person" for a guy about your age who reached out to me several years ago via this forum, and we struck up a phone and email correspondence as he was struggling through finding effective treatment for his PANDAS/OCD and working through being functional in college, in his relationships, etc.  I tried to be a support and sounding board for him, but I got the impression much of the time that I was just aiding and athat betting his OCD, giving it something to cling to, because he could call me and further perseverate and mis-prioritize spending his time talking with me/complaining to me, rather than moving on with his life.  But as his medical and mental treatment programs became more effective, he had less and less need for me, and now I've not heard from him for a few months . . . the longest stint of silence in quite some time.  But in our last exchanges, I could tell he was feeling better, more capable, more "normal," and finding his way through some stressful situations without resorting to hefty OCD behaviors.

Interesting, I had never thought about that before. I did have one experience with an online therapist similar to what you described. When it comes to OCD, it's important to realize in treatment that you are treating the thought process, not the fears themselves. When all of this first started, I had fear that I was going to soon develop psychosis, and I spent hours every day checking things online to make sure I wasn't delusional. Eventually I found a blogger online describing "shiz OCD," or a particular OCD type which I had -- the fear of becoming psychotic. I did some therapy sessions online with him, most of which consisted of him confirming to me that I was not crazy and that it was just my OCD. This would of course calm me down for a little while. But the fears would soon return. Eventually I started taking a large dose of SSRI which nearly eradicated this fear. But I think in order to effectively treat it with therapy, I would have needed not to realize that I wasn't going crazy, but moreso that my fear and checking compulsions were from my own mind messing with me. The therapy sessions I had were not much more than an extension of my checking. 

That being said, I think that social connection is imperative in recovery for pretty much all things. OCD is of course a tough one, because you have to be careful not to "feed" it like you said.

You've said that you have good doctors, friends and a supportive family, etc. so I find myself wondering, is it that you don't want to somehow "burden" them with your troubles?  Or is it that you think they just don't get what you're currently going through?  Or is it that they, maybe similarly to our family, have been trained/educated to not aid and abet the OCD by catering to it, and therefore you sometimes feel a sort of rejection or lack of understanding because they don't support your fears and anxieties to the extent you feel they need to be supported?

I think a little bit of both. I don't want to burden my family with my troubles because they have a lot of other things to deal with, especially right now. But I think the fact that no one will understand even moreso. There was a time before I was sick, before I knew what all of this was like. I consider myself pretty open-minded, but there is no way I could have imagined what this is like, before it happened. It's one of those things that is impossible to understand without experiencing it. 

I don't even feel comfortable telling my roommates who are all psychology majors... It's confusing. But I feel like once someone knows, they will try to make sense of it and advise me from their own perspective, but that simply cannot be done. And I know that they would do this, because I have seen them do it before (they intern at a mental health place, and talk about their experiences). My judgement is not impaired and I know all the things that I should do, but if it were that simple then I would be doing all of those things. These things are not in my control. 

And, in terms of treatment, have you been recently checked for infections and/or inflammatory markers that could be contributing to the strength of the OCD now?  Have you tried anti-inflammatory responses -- change in diet, supplements, etc.?  Are your care providers supportive with respect to investigating these contributors and/or ruling them out or treating them?  Do you see a therapist on a regular basis?  From what we, and many others on this forum have experienced, effectively managing anxiety and OCD, even as an older, more experienced person, can be very difficult if not impossible if an underlying infectious or other immunological cause is not effectively dealt with; unfortunately, all the CBT and ERP, or friend or family support, in the world has a hard time taking effective hold if your body has lodged an assault against your brain.

I haven't had any labs done yet, but I recently saw an immunologist/neurologist who is aware of pandas. I only talked with her for a while, and have another appt. in a little over a month. I've tried many different supplements, diets, etc. A long list haha. One of the anti-inflammatory things I've tried is turmeric, curcumin. I see a psychiatrist who prescribes me SSRI's for OCD, stimulants for ADHD, benzos and others for anxiety and sleep, etc. Although, whenever I've brought up pandas, the topic seems to be quickly shifted. I don't see a therapist regularly, but maybe I should do that. I haven't extensively tried CBT or ERP yet, although, both have been recommended by my psychiatrist. The immunologist recommended neurofeedback. I practice mindfulness daily which does help a lot, but it does not tackle the underlying problem. I recently told my mom about all my problems, actually. And I've mentioned pandas to her multiple times in the past, but she won't take it seriously. My dad's take on mental health -- "you're born with it and that's your personality." Ah.

I can tell from your story that you are strong and persistent, great qualities for a person who faces these sorts of challenges.  I feel certain you will get through this.  I wish you all the best.

Thank you so much, I really appreciate it. :)

 

On 6/21/2017 at 0:42 PM, Hitman3161 said:

Alyssa, I'm in nearly the exact same position. I have a retrospective diagnosis of OCD and ADHD. However, It does very little to explain the sudden acute exacerbations of absolute and total dysfunction. Took the words right out of my mouth! :) Unfortunately in the past, I haven't been able to hide my situation very well or even explain it. I'm 24 and study mathematics at uni, but there's very little chance of maintaining this position unless I can get some solid results fast. I've only just recently consulted with Dr K (Dr. K in Chicago? I'm thinking of seeing him. I'm in Michigan so he's not very far. The issue is my insurance won't cover it since he's out of state.) who's managed to tie the pieces together and suggest a possible diagnosis of PANDAS/PANS. He's provided a letter to my G.P (UK) with the recommended diagnostic and treatment protocols. I just hope I see some follow through. I would love to hear more about this. Perhaps this is something I could look into. Finding treatment (or even a diagnosis) has been incredibly difficult. At my age, going on so long feeling so misunderstood, I'm worried about permanent brain damage. I know everyone's different. I hope you things get a lot better for you, keep me posted on your progress. All the best.

I can so relate. I'm worried about my age as well. Different resources provide different ideas, and like you said, everyone person is different as well, but one thing that resources seem to agree upon is that pandas/pans becomes less treatable with age. I am mad at myself for not looking into this sooner. I always knew it was a possibility, but I brushed it off since my family, doctor's, etc., also brushed it off when I tried to bring it up. 

Have you tried therapy, mindfulness, or any relaxation techniques? I've found mindfulness mediation to help me at least calm down. I'm still working toward acceptance. I use an app called Insight Timer. I highly recommend it!

Thank you for sharing your experience with me. Sounds like we have a lot in common. Please do keep me posted on your progress as well, and feel free to reach out any time! 

 

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Hey Alyssa --

I'm a little surprised that your psych has prescribed you a stimulant for your ADHD; were you prescribed this simultaneously with your OCD diagnosis and SSRI treatment, or did one diagnosis and treatment protocol come some time after the other?  I ask because my DS has also been prescribed an SSRI and it is generally successful in helping him push back on the "residual" OCD he deals with from time to time, particularly in high stress periods.

But there was also a period -- pretty much mid-PANDAS -- during which our psych at the time thought he also suffered from ADHD and wanted to try medication for it.  However, he said quite specifically that simulant medications would only serve to increase the OCD, so we had to stay away from those.  So I guess I'm wondering if you noticed any "uptick" in your OCD once you started the stimulant?  Or if you were to stop the stimulant for a period, if you would notice a curbing of the OCD? There are a handful of non-stimulant ADHD medications available now, among them Intuniv and Straterra, so there are some other alternatives.  In the end, in my DS's case, we discovered that he didn't really have ADHD; rather, that his distractedness and hyperactivity were a coping mechanism he'd developed to manage his obsessive thoughts/behaviors, especially in the school setting.  So once we got the PANDAS and OCD under control, most of the ADHD behaviors evaporated.

Also wondered if you'd heard of Acceptance and Commitment Therapy (ACT) which is growing in popularity for folks who suffer from anxiety disorders?  Since you already practice mindfulness, I would think ACT would come pretty naturally to you and might help you deal effectively on a daily basis.

Good luck!

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