Severe OCD for 11 years and Mental Health... - My OCD Community

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Severe OCD for 11 years and Mental Health System Struggle - Being Deprived of Proper Treatment

Hammyy profile image

Hey everyone! My name is Aimee and I've had severe OCD for 11 years. I live in Newfoundland and Labrador, Canada and have been struggling to get proper treatment and the help I need with our mental health system. There are no OCD support groups, lack of doctors, psycologist and psychiatrist that when people who struggle seek help, there is either a hopeless never ending wait list, or patients get rushed through without proper diagnosis and treatment. I have been prescribed 4 medications 3 SSRIS and 1 tricyclic however none have given me relief. Also, after being on a wait list for a year, I finally got to speak to a psycologist however, it was only for a 9 month period due to " high demand" and just as I was making progress, poof they were gone and therapy stopped. Im struggling more and more everyday. I get in these counting loops now, counting in sets of 17 and never being able to end off on a set because it doesn't feel right. This is the most time consuming and hopeless compulsion I experience and it almost feels impossible to beat without the therapy and medication I need. Does anyone have any advice on how to deal with any of this? If you read all of this, just know I appreciate it and thanks for listening.

32 Replies

Hi hammyy yeah my OCD is all based around numbers mines around 15 It’s called arithromania , I have it really severe also , it’s ruining my life and making me really depressed and anxious

The constant thought of it’s just not right plagues me all day and night

It’s horrendous I feel like I’m stuck in a nightmare and I’m never gonna wake up !

I’m in England so our mental health system is pretty crap also , it’s taken me like 9 months to even get online cbt through the NHS Iv had to privately fund my own OCD therapist

What medication do you take if you don’t mind me asking ?

I’m on Prozac at the moment 60mg and take diazepam in a morning to help calm my anxiety

Would be nice to chat to somebody who has something in common with my OCD

Maxiumuz

Hammyy profile image
Hammyy in reply to Maximuz

Hey Maximuz!!There is so much more I need to learn about this type of OCD, I had no idea it was called arithomania! But it certainly does plague you. I spend at least 4 hours a day counting things and actions until it "feels right". It's from getting dressed, brushing my teeth, filling up my water bottle, etc. It is really crippling because its every little trivial thing in your day, made stressfulllllll. I avoid being alone because being with people is easier and there are less OCD thoughts but lately I'm exausted and want to be alone, which is worse. What do you do to cope?

I first started on Prozac when I was younger but wasn't getting much relief. Then I tried citolophram, Paxil, and my latest one was trintelex, which is a newer drug. All of which were prescribed by family doctors and not a psychiatrist, and were given time to kick in. None gave me any relief and made me feel neutral if you know what I mean.

I recently had an hour session with 1 psychiatrist (how can they really know my entire mental health situation in 1 hour) and he prescribed me a tricyclic antidepressant with horrible side effects. After my journey, its a little hard to trust that this one will work either. And without CBT and exposure and response, it feels hopeless. I constantly seek help and I'm on many wait list. I tried to pay for my own services and there was another wait list.

So nice to finally talk to someone who is similar to me.

Thanks for listening!!

Maximuz profile image
Maximuz in reply to Hammyy

I can always give you a few tips from my therapist if you want me too 🙂Sorry about the late reply I don’t know the time difference we are both in.

And yeah I know what you mean being around people is a distraction but OCD has slowly found a away to take people away from me , I don’t wanna say to much because I don’t want it to trigger any new forms of OCD for you.

Up until last year I was on Sertraline which really has helped me over the years, but I think because I haven’t addressed it and Iv functioned for many years with avoidance that it’s maybe made me worse

I don’t really feel like any medication is working at the moment I have some good days but also some really really bad days like you do.

I’d like to help in any way I can though

Thanks maximuz

Hammyy profile image
Hammyy in reply to Maximuz

Sorry about my late response as well. I am exactly the same and reading your other responses, I ALWAYS feel impending doom. A few years ago, I used to have an obsession, complete the compulsion and my anxiety would be temporary relieved for the most part. Now I will behave my obsession or multiple, do the counting compulsions however because I can never get it to feel right, I'm just sitting there all day waiting for something bad to happen. And the thought is so hard to get rid of sometimes I will just walk away from it and leave the house, however it will be on my mind all day, if anything happens I blame it on that, and I will go back and do the required compulsion. I feel so uncomfortable all of the time. Work was horrible and I would never be able to operate at my full potential. I had a new career however I was obsessing about being the best I could be and proving myself for this new job that I crippled myself and was too stressed to preform. I am currently not working as well. School is also a nightmare in the same way. I can push through it some days however, its easy to fail and be hard on myself. Im kind of at a stand still with my therapy and would be grateful for ANY tips you may have where we are so similar.

Maximuz profile image
Maximuz in reply to Hammyy

Yeah the OCD will latch on too whatever I can in order to raise anxiety and scream for more compulsive behaviour.I was highly functioning with my OCD until this year i just got used too struggling through and having certain days off work which I’d have to make excuses about luckily I had my own business so it wasn’t too much pressure . Early in March though it all changed I had a massive relapse and have been off work ever since.

My advice is don’t let your OCD keep you indoors like I have mine , keep going out and getting through each day

Even if it’s for a nice walk or with friends and family because as soon as you surrender to your OCD it will totally takeover

So I have a strict cbt private therapist she’s expensive but she’s great at her job , an exercise Iv been taught is something called a repeater.

Maybe that will help ?

So if you can tell me a bit more about what your OCD thoughts are telling you I’ll try and administer that into the repeater

You can always private message if your embarrassed or don’t want many people knowing

Anything is totally fine hope I can help.

helloworld22 profile image
helloworld22 in reply to Hammyy

“impending doom” - I call it “nebulous fear”

helloworld22 profile image
helloworld22 in reply to Hammyy

Hi Hammyy,

“it doesn't feel right” is really the driving force behind many (maybe all) varieties of OCD, and there are an incredible variety of things we do (or avoid) to try and alleviate that tension. (That doesn’t solve things, but understanding what’s going on can help some).

Just curious, was the tricyclic Anafranil (clomipramine)? That drug really seems to knock out OCD, but those older drugs have more side effects (Anafranil has serious constipation, for instance).

I recommend everyone with OCD read the book Brain Lock: Free Yourself from Obsessive-Compulsive Behavior, by Jeffrey M. Schwartz.

This is a link to it: amazon.com/Brain-Lock-Yours...

Best regards

Hammyy profile image
Hammyy in reply to helloworld22

Hey there!That is the tricyclic antidepressant im talking about!! The side effects seem pretty horrible, and I was hesitant to begin them, however if they tend to knock it down, hopefully I can feel some relief. Every other medication hasn't done much and I haven't heard much about the tricyclic one so this info is very helpful.

Thanks!!!

Trishly1234 profile image
Trishly1234 in reply to Maximuz

Hi Maximuz - curious to know where about in UK - I’m Birmingham and feel really let down by mental health services

Maximuz profile image
Maximuz in reply to Trishly1234

Hi ! I reckon around an hour and a half away from you , I’m Sheffield.Yeah there’s some major floors in our system I don’t even know where to begin!

It’s taken me 9 months to get into cbt therapy and that’s only online so I’m still actually seeing anybody!.

All the doctors wanna do is wack you on some medication and send you on your way , very bizarre for the era of medical technology that we are in

Thanks maximuz

Trishly1234 profile image
Trishly1234 in reply to Maximuz

20 years I started asking for help and only just been picked up by mental health team and I asked for that referral 2 years ago - at first they tried to dismiss me so I complained through PALS and have moved very quickly up the list - got to see a psychiatrist last week who agreed I had been failed!! 7 diagnoses and new medication plus long term therapy- unfortunately I feel you have to make a nuisance of yourself but you have to do what you have to do so consider PALS if needed- happy to help if I can or if you need to offload

Maximuz profile image
Maximuz in reply to Trishly1234

Oh right yeah that seems true I had to go too accident and emergency back in March and basically told them I was so depressed it was making me suicidal which isn’t great From then on I got fast tracked too a psychiatrist and mental health team

Now the community mental health team phone me up once a while but I do struggle everyday , like most of us on here unfortunately.

I’m very shocked at the process and the fact they even didn’t want to take any bloods to see if my body and brain was low on any vital nutrients that could have helped.

Iv been paying for private therapy and made a little progress but haven’t really been getting out and about like I was a year back👎🏻

Work was giving me a lot of stress so I took some time off , but I realise now that might not have been for the best as it’s left me with a lot of free time

Feel like I’m going crazy most days

How has your ocd been the last few months ?

Trishly1234 profile image
Trishly1234 in reply to Maximuz

I hear you - I haven’t been to work since mid April and all the time off is definitely adding to overthinking however when I do try and do something it results in panic attacks or bouts of sobbing that doesn’t stop for days - I honestly don’t know where the tears come from- for the last two years I could feel myself spiralling out of control but the last five months I’ve stopped functioning!! I hardly move and I hate it but it eases ocd just makes me more depressed and anxiety out of control when I do need to do something!! Feel crazy too - had a meltdown last night over the washing- it’s like there’s a switch inside me and I’m constantly chasing depression anxiety and ocd and I don’t know how to break it - everything I seem to do might ease one but makes the others worse - you can ask gp for blood tests and some pharmacies do them -

Maximuz profile image
Maximuz in reply to Trishly1234

Yeah I was thinking about asking the doctor about that to be honest .I am exactly like that also , I try and avoid going out and watching tv so a lot of the time I’m bored out of my mind!I also do that with my ocd such as one thing can make it feel better but then for example if I go outside and something doesnt add up right then I have a huge meltdown and anxiety attack!.

I really don’t understand why there are no better medical procedures for this illness it’s so life changing.

I just always feel so hopeless and a sense of impending doom if you ever feel that ?

Not being able to leave the house has hit me like a ton of bricks , Iv lost so much of my old lifestyle I feel as though I’m just here to exist at the moment

Trishly1234 profile image
Trishly1234 in reply to Maximuz

Yes I’m just existing and getting very little joy out of anything- it’s a struggle to get out of bed and then come the end of the day I don’t want to go to bed as I know it will be the same in the morning- and it’s exhausting even doing the basic of tasks with rechecking everything and doing things in a certain order with a mental plan and checklist and any interruption means I have to start again! Then I just don’t have the energy to finish the task so everything feels like a mess

Maximuz profile image
Maximuz in reply to Trishly1234

I hear you on that I take sleep aids now at nighttime they really relax me and as soon as I wake up I have a diazepam Not ideal I know , but just trying to get through each day is tough

Have you learnt any cbt coping techniques yet or aren’t you that far on ?

Trishly1234 profile image
Trishly1234 in reply to Maximuz

Fortunately I’m an over sleeper- try to avoid diazepam and only use when anxiety has my body shaking and trembling- recently invested in a weighted sensory blanket which reduces physical symptoms of anxiety- I’ve had four cycles of cbt and found them ineffective- probably due to a misdiagnosis and originally being told it wasn’t ocd so the sessions looked at reducing anxiety but any strategies I picked up soon became obsessive- the last one looked at writing my worries or intrusive thoughts on post it notes and take an hour each day to process them - however the thoughts come that fast and frequently I couldn’t keep up and was left with over 50 post it notes with words like ‘blah’ ‘something’ or sometimes just question marks - sometimes I’d be trying to write so fast and shaking so much I wouldn’t be able to read them so I’d then obsess about what that thought could have been that an hour would turn into about 5 ! So Yh pretty ineffective- hopefully psychotherapy will look at the whole picture

Maximuz profile image
Maximuz in reply to Trishly1234

Yeah it’s very tough , I’m having cbt and ERP they have worked a little but my OCD always tells me that it isn’t going to work , which is probably my psychological downfall of being very negative about myself.Repeaters do work a little if you ever want to try doing that , you basically repeat what your obsessing about in a mirror until your anxiety goes down or you get bored.

It’s designed to open new neurological pathways in the brain

Just thought I’d try and help where I can , no worries if you don’t think it will work but trying doesn’t cost nothing 🙂

Trishly1234 profile image
Trishly1234 in reply to Maximuz

Absolutely agree anything is worth a try - right now I’m feeling anxious but no idea why so that’s what I’m obsessing about lol I also get downhearted when I try something like meditation or walking but the impact is short lived- feels like a lot of energy for little benefit however I’m determined to fight this - I’ve managed it before as a single parent with two youngsters and a full time job so I know we’ll find a way

Hi Aimee- sorry to hear your struggles - the system in England is pretty much the same- told 20 years ago I didn’t meet criteria for ocd - finally got the diagnosis about 3 months ago !! A lifetime of anti depressants and more recently diazepam- offered 4 cycles of cbt focussing on anxiety and low mood that had no impact - decided to pay privately for psychotherapy but have had to pause due to finances as I can’t work atm - thankfully I now have an assigned psychiatrist who gets me so I feel I’m at the start of recovery- good luck to you and know you are not alone x

Hi again - maybe take a look at ocd test.com - once you have taken the test it outlines all sub types of ocd - really opened my eyes with some useful information x

Hammyy profile image
Hammyy in reply to Trishly1234

Hey there! Thank you so much for that resource and sharing your story. Reading a few of your other comments, I wanted to say I completely agree about how hard it is to do any task, it just makes me not want to do anything at all because of how much pain it puts me through. It is SO hard to get out of bed knowing what Im about to go through, and it's trivial, everyday things. Im so distressed at the littlest things that when anything horrible actually happens, that's when I have full on spiraling meltdowns and I pace the room for hours until im done being fixated on it. I also have a weighted blanket that I actually find helps me as well. I also tried something like the post it note thing, but just writing every compulsion down in a note book as I go through my day and it just got overwhelming and too much to write because it's literally every thought. I understand what you are going through! I feel like I'm at a complete standstill and im tredding water.

Trishly1234 profile image
Trishly1234 in reply to Hammyy

Yes I feel I’m at a standstill- it took me three weeks to clean the fridge and I still don’t feel it’s right so I don’t want to buy any food to put in there but haven’t got the energy to do it again- feel free to reach out - hope I can help or at least bring comfort in the knowledge you’re not alone x

alexandraisobsessed profile image
alexandraisobsessedIOCDF Advocate

Welcome Aimee,

I’m very sorry to hear you’re having a hard time accessing the care you need.

I understand how debilitating OCD is when it goes unchecked and I think it’s great you’ve come to this community and reached out for help.

I see you’re getting a lot of support which is amazing.

Here are a couple of resources you can check out if you’re interested that may help you with coping:

cbtschool.com/free-resources?

podcasts.apple.com/us/podca...

Kimberley Quinlan is an OCD specialist and she runs the podcast and training classes. Her resources have been a great help to me on my journey.

Wishing you all the best,

Alex

Hey Alex!I am so thankful that I found this community, as this whole time I've felt alone with my journey. It's super helpful engaging with people who truly do understand, and because I've been at a stand still with therapy, this community has been EXTRA helpful. Thank you so much for the resources, I'm going to check them all out! Much appreciated.

Kindest regards,

Aimee

Hi hammyy......please know that you’re not alone. I deal with very similar counting /numbers condition too. I also had been on many meds a long time ago and none seemed to help. However I can tell you that this can get better with time. I had counseling off and on too but eventually I had read about exposure type therapy. And I sort of ended up trying that myself in my own way. I still have many forms of counting and numbers issues, but over time it has gotten better. I think some of it morphed into another theme but I just wanted you to know my experience and that it can improve. I definitely do not recommend trying to do exposure therapy or any therapy on your own, but given your location and difficulty trying to find help and medication near you, it probably doesn’t hurt to read up on it and give it a try. It’s definitely not easy , and my heart goes out to you cause I know what your dealing with. hopefully you can take one episode at a time and work through it best you can and it will subside some for you. Keep looking for that help though , because a professional can get you through it more . I know this isn’t ideal, and maybe others in the OCD community have provided much better advice, but what about a telehealth or video type therapy with a doctor live on the computer. I believe there are options for that. I’m actually back to trying to find a doctor too myself and meds, because can’t find them easily where I live too. I might try that also if I have to. Please know that you’re not alone, and it can get better.

Hammyy profile image
Hammyy in reply to WalkinCircles

Hey!Thank you so much for sharing your story and it's always comforting to know I'm not alone. Where I've had this for so long now, and went through so many different types of meds and starting and stopping therapy, it's hard to see the light at the end of the tunnel. Some points in my life the OCD has been bearable, however in the last few years with the pandemic, my counting loops have only gotten worse and the exposure and response became more difficult. Its hard to stay positive. I had a solid psycologist for 9 months and then due to lack of psycologist in NL, it had to end. Ive tried to continue the exposure and response we started but it got too difficult by myself. Ive tried to look up online therapy from different countries and within Canada, but it can get expensive and I haven't really found a legit one. Thanks so much for the advice, I should definitely look up more telehealth options, do you know of any reliable ones? I hope you find meda and a doctor yourself and thanks for letting me know im not alone!

WalkinCircles profile image
WalkinCircles in reply to Hammyy

You are very welcome. I understand completely about starting and stopping and it getting worse. Definitely feel for you , and know that feeling all to well. I have seen some options for telehealth and I’ll look for them again for you.

It can really be challenging when there isn’t much for docs and meds close by.

All my best and stay strong. We’re all in this together lifting each other up

My magic number is 5.5 (in decimal). Can't enjoy my life, no time to see psychologist. I try to think of 0. 0 also means 0 thoughts, 0 thinking.

Hi Amii

I am sorry to here of your struggles with this very consuming and mis understood illness.

I am sorry to hear you have no access at present to support and treatment..

I am just wonderimg if u do meditation or relaxation to help you relax and distance urself from ur mind. I find that helps.

Wishing u the best of luck .

Your not alone even though it is one very lonly illness.

Regards

alexandraisobsessed profile image
alexandraisobsessedIOCDF Advocate

Hello Aimee,

Just checking in to see how you’re doing.

Hi Aimee, how are you? My name's David, & I've had OCD for close to 40 years.

I'm sorry to hear about your situation with the lack of adequate mental health care. Fortunately, we have a better mental health system here in the US (NY). I have seen many Psychologists & Psychiatrists throughout the years. One thing that's very important is to be on the right meds. Anafranil is the one I'm on now which is very helpful for OCD. Also, I'm taking a supplement called NAC (ACETYL CYSTEINE) with natural peppermint. My Psychiatrist says this had had good results for the OCD.

Actually, the best treatment for OCD is Behavioral Therapy, specifically E&RP, which stands for Exposure & Response Prevention. This is a therapy that has been in use for over 20 years & what I think is the overall best treatment for OCD. It encourages participants to expose themselves to their obsessions, while they prevent themselves from using compulsions to get rid of their resulting anxiety. The fearful thoughts & situations are approached in gradually increased amounts over a period of time of from several weeks or months. The result is what's called habitation. That is, when you remain in the presence of what you fear over long periods of time, you'll see that no harm of any kind results. As you do so, you build up a tolerance to the presence of the fear, & it's effect is greatly lessened.

There is a great book written by Dr. Fred Penzel called: "Obsessive Compulsive Disorders - A Complete Guide To Getting Well & Staying Well." You might be able to get it at your library or on Amazon Or Ebay for about $25.00. Dr. Penzel was my doctor a while ago, & is one of foremost doctors in treating OCD for over 30 yrs.

There is also a great OCD treatment ctr. @ McLean Hospital in Belmont, Massachusetts. You could try getting In touch with them. I'm sorry but I don't have their phone #, but you can Google "McLean OCD Hospital" to find it.

Please get back to me & let me know if any of what I said was helpful.

Best Regards,

David

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