a cry for help...

[PEte]

Hello

I just stumbled across this forum and everything I read just seems to lead me to more questions. I'm hoping someone can shed some more light on these issues. Thank you so much to everyone who has posted here, so far this has been very helpful. the wealth of information is very intimidating though, especially to someone with attention problems. I'm sorry if these issues have been addressed before, I don't really know where to go from here or what to search for. Also I don't know if I'm posting in the right forum, but it seems I have a little bit of everything listed here...

 

My story: when I was 10 I began exhibiting repetitive motion of the neck and head as well as several ocd symptoms like hand washing, obsessive tapping, and rituals with stairs and others. Around the same time teachers began complaining about attention issues and problems paying attention in class. I always got good grades, and always knew the answers when asked, but teachers would call on me because it appeared that I wasn't paying attention. When I knew the answers they were surprised. I have some sporadic memories of this and I think that I would figure out the answer from some sort of short term memory of what they were saying. like I wasn't paying attention but I had a tape recorder in my head, and when they asked me a question I could play the tape back and figure out the answer. I've always been quick and good with numbers, but tasks that require sustained attention are very difficult.

 

My mother took me to my pediatrician because the ocd was driving her insane and she was worried about the head-jerking movements that appeared seemingly out of nowhere. He referred me to a neurologist who diagnosed me with a mild case of Tourette's. Years later we would find out that he was a child molester, and he attempted to molest me (I won't go into details here but needless to say it causes me to completely distrust his diagnoses and doctors in general). I also went to a psychologist who diagnosed OCD and recommended some behavioral therapy.

 

I believe I learned to cope with most of these symptoms as I got older specifically through excersise, and I was able to reduce my tics (*or so I thought). The still come back strong sometimes and new ones have developed that I didn't even realize until I understood them in this context (or maybe they have always been there I don't know).

 

I went to a good college and did very well studying physics, and was a two sport varsity athlete. When I graduated with honors I couldn't seem to find a job that I could tolerate. I couldn't imagine sitting at a desk all day and I think I subconsciously knew about these problems and the limitations they placed on me.

 

I became a waiter and eventually a coach of a very intense sport (I'm going into much detail because It's very specific, and I'm very paranoid about someone finding out about this and thinking I am crazy). Both of these jobs are fairly intense and require quick thinking and being active and moving around. I also got very into running and, looking back I see that running was definitely a way of self-medicating. I also have always been a drinker, not a binge, blackout, puking drinker but I definitely drink more than average and more frequently than most people. I think this was a way of medicating as well.

 

Recently (10 months ago... I am 29 yrs old btw) I injured myself and was unable to run or do much aerobically for a while. I think I became depressed, and the tics, and ocd got much worse. I began looking into grad school or other jobs but the idea of focusing was so hard that I couldn't get motivated to do anything. I began researching depression in the internet and stumbled across an informational ad/hd article (i.e. not one of the many fake websites put up by pharm companies to try and convince you that you have a problem). I fit the profile of someone with ad/hd to a T (the inattentive type not the hyperactive type). Right down to the impulsiveness and difficulty maintaining relationships.

 

I think that I actually have Ad/HD, though with the OCD I tend to be a bit of a hypochondriac (or so I'm told). I sometimes wonder if I just dwell on it so much that I convince myself I can't focus. In any case, the results are real, I'm pretty much unable to do anything for more than 5 minutes except maybe in the morning after a cup of coffee. I've taken three breaks in typing this so far. When I'm reading I tend to jump over sections that are involved or contain words I dont' know almost by habit because I know I won't be able to keep going if I get off task. My main problem is that I dwell on worst case scenarios A LOT and it takes up so much of my mind.

 

Recently I was in a very short but intense relationship with a girl who I fell very hard for very quickly. Even when things were very good with us, when she wasn't around I coudln't stop thinking that she may stop liking me, or cheat on me, or worse die in some sort of accident. I because consumed by it so much, and then it actually happened. She cheated on me, and said that she couldn't be in a relationship with me right now, but that she had very strong feelings for me but she was in a bad place and wanted to take a step back. I obliged, because I knew she had been struggling, and we continued to date occasionally. However I couldn't stop dwelling on more worst case scenarios, and it tore me apart and I let it tear us apart. I stopped speaking with her but for months I was totally consumed by dwelling on the failure of the relationship. At the same time I had surgery for my injury and was prescribed hydrocodone as a painkiller. When on the hydros everything was much better. I was able to have positive thoughts about the future and even get some small tasks done that I had been putting off. When the script ran out I went right back to dwelling and pretty much unable to do anything more than my very basic responsibilities to get by. I was able to return to my job and start running again, which made things much better (or at least tolerable... I was still having the same issues I've had all my life).

 

Then two things happened: I spoke with the Ex, who informed me that I had never given her the space she had asked for, and that we were so damaged that it was unlikely that we could even be friends. This was the time I realized how much damage my problems had caused, and I had a mini-breakdown. I was up all night dwelling and felt like I wanted to cry but couldn't. The next day I called the psychologist that had seen me as a child and told him I thought I had ad/hd and anxiety problems. I also injured myself again and was bedridden for a week, and am still unable to excersises for another week (this was 3 weeks ago). The psych said that I had exhibited attention problems since childhood and based on a survey he gave me concluded that I had adult ad/hd. (he was aware of my previous diagnoses of ocd and tourette's). I told him of the dwelling and he called it an "internal distraction that happened with the inattentive type of adhd.

 

Due to the tourette's he said stimulants would likely exacerbate my tics, which was why I wasn't prescribed one as a child. He put me on strettera which I am currently on my 4rth day of. The side effects are quite unpleasant, naeusea and tingling all over my body, as well as irratibility and trouble sleeping (though I had that before it seems worse). I agreed to try it for another few days because he says it takes some time for your body to adjust and he is confident there is a good chance it could help me. I still dwell, but maybe the fact that I've typed this long means it's starting to work, but maybe it's because I've had 2 strong sups of coffee and about 3 beers oever the past few hours. The medicine is $200 a month and my insurance doesn't cover it so its a very expensive chance. He says it may take up to 6 weeks before it works, which means another month of scraping by, getting nothing done, and suffering in my own head... just for a very expensive shot.

 

In researching these problems online I came across PANDAS, and it seems likely to me that this was the root of my problems. In middle school I had strep almost constantly and at one point was put on an antibiotic for an entire year. I thin we later determined that I actually had just one long lasting case of strep and that was resistant to antibiotics. I never got very sick, but would occasionally have a sore throat, and every time I went in for a strep test it was positive without fail. I had 7 cases in one year, which led to the year long script. I know little is known about PANDAS but from what I've seen the consensus is that is tends to dissapear into adulthood. Mine clearly has not.

 

If you've read this far I want to sincerely thank you for taking time out of your day. I don't know what I expect to get here but it feels good to have everything written down and at least tell someone who will believe me. It's so frustrating to tell people I think I have some problem and have them say "oh yeah I have trouble paying attention too, you're normal", or "you just need to snap out of it" or the worst "you're really smart, you are one the smartest people I know".... If I'm so smart why can't I go grocery shopping or budget my money or stop thinking about a 3 month relationship that ended 5 months ago?

 

I've tried reading the research but I'm simply unable to read a medical report and make sense of it. Does anyone have any idea where I should go from here? I'm getting close to wits end, I'm not suicidal at all, I figure worst case I'll just dissapear into the wilderness and live like a caveman (haha)... but the idea of running away is more appealing every day.

 

Thankyou again for taking the time to read this, I just skimmed over what I've read and it's almost funny how much this problem has run my life.

-pete

Edited May 11, 2010 by PEte

[peglem]

Do you have a history of infections, or did your problems begin shortly after an illness?

[MomWithOCDSon]

Hi Pete --

 

"Welcome" sounds funny under the circumstances, but you have found a very supportive and experienced community here. It certainly does sound as though there may be an infectious beginnings to your current issues, so it is worth exploring. You're probably up against even greater ignorance than those of us with children, however, being as PANDAS, by definition, has "pediatric" in its title, and the medical community as a whole is probably even less prepared to deal with potential adult PANDAS than the childhood version.

 

That being said, there are several people who participate on this forum who believe themselves to have an adult form of PANDAS, and there is a doctor, Dr. Kovacevic in Hinsdale, Illinois, whom I believe has seen some adult PANDAS patients. You might search the pinned threads here and see if you can get in touch with a doctor who would help you through some of the basic testing for your condition . . . ASO, AntiDnase, immune panel, etc. There is also the Dr. Cunningham test for CamKII which might be helpful, though, at present, it is privately funded and may be out of your price range at present. In time, I'm sure one of the grown-ups here with the condition will speak up regarding what's been most helpful to them.

 

As for Straterra, there have been some reports among the PANDAS community that it helps not only with focus, but also with setting aside some of the OCD tendencies. Just as a side note, my DS13 is also taking a non-stimulant ADHD medication, but his is Intuniv, rather than Straterra. Though both Straterra and Intuniv require some time before reaching full efficacy, my son experienced some enhanced attention abilities within less than one week taking Intuniv, and his psychiatrist has expressed that, in his experience, Straterra doesn't work for everyone, so he prefers Intuniv. It might be something to consider if you find the Straterra doesn't seem to be assisting you over time.

 

Finally, having lived with a child who was originally diagnosed with OCD at 6 but is currently moving toward a PANDAS diagnosis at 13, I know that some of the OCD and ADHD behaviors can become "learned" over time; they become coping mechanisms in a world that isn't immediately accepting of these behavioral differences. So I applaud your returning to the psychologist and hope you'll consider some cognitive behavior therapy (CBT), and more specifically with regard to the OCD, exposure response prevention therapy (ERP), to help deal more directly with those behaviors. Even as you work to determine perhaps the infectious trigger for your illness, especially as an adult, therapy will help you confront some learned behaviors and maybe even "habits" that could get in the way of your living your most fulfilling life, including relationships.

 

Continue asking questions and know that you can find some long-delayed support -- and quite possibly answers -- here!

 

Nancy

[melanie]

How old is your child? It sounds almost exactly like mine

 

melanie

[PEte]

Thank you Nancy, much of this info is new to me. I'm going to look into the things you mentioned. My heart goes out to your son, he's lucky to have a mom who understands. Mine did as well but there simply wasn't as much info at the time (seems hard to believe a world without the internet!). If he has what I had, getting him involved with sports I think is the best non-medical thing you can do. I remember winters being the hardest for me both at home and at school, and with spring I started playing tennis and my life improved dramatically.

Good luck and thank you again for your help.

-pete

[PEte]

I have always been fairly healthy, I did have strep a lot as a child, and the symptoms (tics) were a very sudden onset. My mother can remember the exact week that I began exhibiting symptoms, and they were very dramatic so it's unlikely she could have missed them. I'm guessing that I had a dormant form of strep or something since I continuously tested positive for it.

As an adult I haven't had a strep test but I can't remember being sick for more than a day or two in the past 5 years. I believe my symptoms have been present with some degree of severity since childhood and I'm not aware of a correlation with illness, though I haven't been aware of this as a possibile connection so I haven't been looking.

 

Do you have a history of infections, or did your problems begin shortly after an illness?

[Fixit]

Pete...i am supposed to taking break from the board ,,,but i'm a mom...soooooo

i haven't read all the replies ...i will later...

But JMHO..the more i know, and the more that OLD papers like the one Vickie just posted from 1918.....

ITS ALL PANDAS/PITANDS..(there are a few odd things like brain injury and tmj problems).the problem is finding i guess what may have triggered you ,,,if thats possible...

but from current info you can gather, and tests....find what the right and the long(hopefully not)journey is to your recovery(everyon here is slightly different)!!!!!!

As a mom, maybe your mom can help you read through all this stuff and get you started...and it would be great if you can continually discuss this with her anyway becasue 2 heads are better than 1.....

There are several web sites with addditional info and several docs too....

i will check back later...but i'm sure you'll get some great leads here while i attempt to take a break!!!!(i'm not the smart one anyway!!!)

[Mary M]

I wish there were answers...hopefully the information you glean from the amazing contributors on this forum will help you to work through some of this. I have worried about the ramifications of this into adulthood. I just don't think there's much information about PANDAS into adulthood at this time and that makes connecting the dots particularly difficult for you. But this supportive forum is at least a step in the right direction.

[amy s]

Pete- thanks for editing your post and giving us more history and info. I am so sorry that you are not well.

 

I don't have any info about pandas in adulthood but yes, i believe your illness could be related to your strep exposures/infections as a child.

 

Have you ever taken steroids for anything...for example, in your life did you take steroids for poison ivy, asthma or anything? And if so did your symptoms go away?

 

I think you should email Dr. K and see what he says. webpediatrics.com is his website.

 

In my child, pandas completely got in the way of any sport, or even brownies/girl scouts....just fyi. It doesn't affect everyone the same.

 

I'm wishing you the best. Keep us posted. Get to your doc and get an ASO and AntiDNAse levels.

 

regards,

amy s

[kimballot]

Pete -

 

I am sorry you are not feeling well but happy that you found this forum. Your posts about exercising helping are so interesting to me as I am an occupational therapist and some of the physical therapists I work with have been asking me if anyone is researching exercise and PANDAS. Exercise has been shown to be of benefit in other autoimmune/ inflammatory disorders, so it makes sense that it would be helpful in PANDAS.

 

I hope that you follow the leads that OCDMom and others have suggested and find a PANDAS expert to work with you. Please keep us posted in your journey - we are with you and you could be a family member of any of us.

[peglem]

Do you have a history of infections, or did your problems begin shortly after an illness?

Okay, I'm not crazy! I posted this when the initial post was much shorter and had no mention of strep!

[PEte]

No problem Peglem, I figured you didn't have time to read the whole post, it's much longer than I expected it to be... and I'm not about to call anyone crazy!!

Do you have a history of infections, or did your problems begin shortly after an illness?

Okay, I'm not crazy! I posted this when the initial post was much shorter and had no mention of strep!

[PEte]

Thanks Kim

In terms of exercise, the biggest benefit it has for me is it improves my focus and ability to not dwell on things. As for Tics, I think I actually developed some sport-specific tics. For example, I played tennis, and while waiting for a serve I would tap my elbows on the tops of my hip bones in a symmetrical pattern. After a few days I would develop bruises on my hips which made me much more aware that I was doing it.

I remember one particular winter I was having reoccurring thoughts about the space shuttle challenger explosion. I would imagine the people in the shuttle and the loss to their families, just sit in my room for hours and imagine that it was my family on the shuttle or that I was on it. There seemed to be nothing I could do to stop the bad pattern of thought. Actually as I'm writing this I realize that it may not have been the actual exercise but the decrease in "down time" that the tennis season brought. In any case I think the more you are occupied by outside stimuli, the better, and exercise, especially aerobic, helps put a more positive spin on the dwelling at least.

 

Hope this helps

-pete

 

Pete -

 

I am sorry you are not feeling well but happy that you found this forum. Your posts about exercising helping are so interesting to me as I am an occupational therapist and some of the physical therapists I work with have been asking me if anyone is researching exercise and PANDAS. Exercise has been shown to be of benefit in other autoimmune/ inflammatory disorders, so it makes sense that it would be helpful in PANDAS.

 

I hope that you follow the leads that OCDMom and others have suggested and find a PANDAS expert to work with you. Please keep us posted in your journey - we are with you and you could be a family member of any of us.

[EAMom]

Welcome Pete.

 

I know little is known about PANDAS but from what I've seen the consensus is that is tends to dissapear into adulthood. Mine clearly has not.

 

My understanding is that if treated (appropriate antibiotics, immunotherapy) PANDAS has a good chance of disappearing (or going in to remission) with adulthood. There are a few moms that post here that have PANDAS. Pregnancy was helpful for a couple of them (obviously not something you can pursue).

 

Peglem...where is the link to the Turkish Paper? They were all adult men with PANDAS.

Edited May 9, 2010 by EAMom

[peglem]

Welcome Pete.

 

I know little is known about PANDAS but from what I've seen the consensus is that is tends to dissapear into adulthood. Mine clearly has not.

 

My understanding is that if treated (appropriate antibiotics, immunotherapy) PANDAS has a good chance of disappearing (or going in to remission) with adulthood. There are a few moms that post here that have PANDAS. Pregnancy was helpful for a couple of them (obviously not something you can pursue).

 

Peglem...where is the link to the Turkish Paper? They were all adult men with PANDAS.

I'll have to see if I can find it again. The link on the original post doesn't work anymore.