Needing Support For SEVERE OCD: Hi everyone... - My OCD Community

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Needing Support For SEVERE OCD

Hoping_to_Heal profile image

Hi everyone:

I joined this site not too long ago, and I **suffer** from extremely severe, debilitating OCD (& related Depression). I've had very, very crippling symptoms for about 17 years -- I'm 43 now -- and I've lost most of my life & ability to function because of OCD. My symptoms have not responded well to the standard treatments (medication, ERP therapy), and I am very isolated & feel hopeless. I have many types of OCD -- severe Contamination/Germ OCD with excessive hand washing, intrusive thoughts (Harm/Responsibility OCD), "Just Right" OCD, & Perfectionistic/Order OCD. I'm constantly washing my hands, checking, repeating, counting, doubting... absolutely miserable & SCARED... I'm in dire need of some friends who can relate to me/my situation, and who could hopefully offer some support or encouragement. I feel so alone & tired! Is there anyone out there like me? HELP.

53 Replies

I can relate. Let's be friends. I came here for my MS just recently because I was very low and needed MS friends after being in denial for 7 years. I just joined the OCD group here because I have OCD too. It was a lot like you are experiencing about 15 years ago....EMDR helped me a lot. Happy to help in any way. I am on duloxetine the last 12-14 years and it helps too. I know it feels hopeless but it can get better, I am proof. I

Hoping_to_Heal profile image
Hoping_to_Heal in reply to

Hi, nice to meet you... What is EMDR & how did it help you? I take Duloxetine too, have for many years, but it doesn't do much for my OCD. It helps a bit with some Depression and anxiety, but my OCD rages on...

in reply to Hoping_to_Heal

Eye Movement Desensitization and Reprocessing (EMDR) is a psychotherapy treatment where you bring up trauma and you discuss it while looking at these lights that move back and forth and hold little sensors in your fingertips. It does something within the brain that has allowed me to take events I had PTSD from and process them as a man in his 30s and not the child it happened to. I went to talk therapy for severe depression and it eventually dug up a lot of trauma that brought on really bad OCD for the first time. I had trouble leaving the house. I felt so alone. Here is a link for more info. It saved me. Only thing that worked. emdr.com/what-is-emdr/

in reply to

I have OCD because I buried traumatic crap that made me feel bad and guilty etc so trying to be ''perfect' with rituals etc would make it so they would stay there.

Hoping_to_Heal profile image
Hoping_to_Heal in reply to

Ok... My OCD isn't caused by trauma, so I doubt that type of therapy would help me.

in reply to Hoping_to_Heal

Not just trauma. I am not a doctor. Please consider looking into it. It saved my life. Google, says Can EMDR help with OCD?

Research into the use of EMDR in post-traumatic OCD treatment has thus far yielded promising results. Dr. Böhm and Voderholzer found that EMDR reduced OCD symptoms by up to 60% and that patients “experienced EMDR as a useful and motivating method.Apr 21, 2016

in reply to

how do you know why you have OCD, I am curious? My dad does and he and my sister both got sick when i was 12 and it caused my OCD too, Nature and Nurture.

in reply to

or so believe, after EMDR...beforee I had no idea. Sorry to be a pest. I empathize so much.

Hoping_to_Heal profile image
Hoping_to_Heal in reply to

I inherited the tendency from my mom, who also has OCD. But I came down with horrible symptoms after I had to stop my antidepressants because of side effects. Something went VERY wrong in my brain and the OCD monster "woke up". That was 17 years ago & I've never been the same since then.

in reply to Hoping_to_Heal

If nothing else works, maybe you could try looking into it, there is lots of info online. i did it because i was desperate and it worked. I wish you well.

I understand. I've read that people can inherit traumas. I think I did. how are you doing off medications?

I didn't inherit any trauma -- if that's even possible --, but I do believe I inherited OCD. I take a tiny dose of Cymbalta, which is all that I can tolerate. It helps with some anxiety & depression, and only a little for OCD. I used to be able to tolerate the maximum dose of that med for many years, but my OCD was still horrible.

Engelbrekt profile image
Engelbrekt in reply to

Thanks Jon for telling about EMDR and for referring to the article from Dr Böhm. I have talked to my therapist about it, because I think it´s something I would benefit from.

in reply to Engelbrekt

Thank you. I thought I was destined to a certain life but my amazing therapist and her EMDR gave me my life back. It took years but it happened.

Engelbrekt profile image
Engelbrekt in reply to

Glad to hear👍

DCOCDdude profile image
DCOCDdude in reply to

Congrats! how many EMDR sessions did you have to do to feel some relief?

Danwocd profile image
Danwocd in reply to

Hey I'm Dan. Thanks for your note. I have severe ocd and depression. I have been in excruciating and exposure response prevention for years. I don't believe many people can understand how difficult it is to watch life slip by while all your nightmares seem to come true. Covid is very difficult as well and my OCD is worse. I am hanging on fine but I appreciate the candidness of your note. Take care. dan

Thank you... Yes, I have lost my whole life to OCD. It ended up invading almost every aspect of basic functioning, making it all *terrifying* and utterly exhausting. My Depression is very severe, too. I have no energy or much motivation to do most things now... I don't know what to do anymore.

I can relate to you.

I have gone through lots of treatments, medications, and nothing has worked on me.

I do checking, counting. doubting, order and symmetry OCD.

Overall, my OCD is severe, and I am fed up of it.

There is no peace of mind.

OCD latches to something different all the time.

I feel depressed about my situation.

We are here for each other.

We can offer support and hope.

The best way to resist compulsions is to sit with anxiety, and face the feared consequences.

The anxiety will be high in the beginning, but it will get lesser.

The thoughts will slowly fade away.

I hope this helps.

I am there for you as a friend.

Take Care.

Hoping_to_Heal profile image
Hoping_to_Heal in reply to

Thank you for the support... A huge problem though with my OCD is that I often cannot "sit with the anxiety" and it won't go down over time; that is, I don't habituate to the anxiety. My OCD usually keeps screaming and nagging until I do the compulsion (washing, checking, repeating, etc). I have done some ERP therapy already for about 4 months at a residential treatment center (Rogers in Wisconsin), and it didn't work very well for me.

It's only for extreme cases, and it doesn't necessarily work, but you can look into neurosurgery, they can place a pacemaker device in your brain, it is supposed to block the signals causing the OCD symptoms, it creates a scaring to hopefully block them signals, it extreme though, and only in the most severe OCD -treatment resistent cases, It's like 2 of three years of consistent OCD treatment to even possibly qualify. It is out there. Have you tried, I think it is called deep brain stimulation?

Deep Brain Stimulation is the invasive neurosurgery that you're describing. I want to get Gamma Knife instead.

The one I was initial think of was Transcranial Magnetic Stimulation (TMS), I heard that can work for some people too. I forgot about the other procedure, but I think I remember reading about it. How is it going for you, are close to getting there.

I haven't been able to pursue Gamma Knife yet. Sadly, I've been trapped in my apartment for about 2 years now because my OCD is so bad -- exactly why I need this surgery...

Sorry to hear, is there anybody that you could talk to, or to help you be able to pursue it?

No, not really at this time. I'm looking into OCD teletherapists, but they aren't easy to find, and teletherapy may not be covered by my Medicaid.

Hoping_to_Heal profile image
Hoping_to_Heal in reply to

And I'm sorry for your own suffering -- I deeply empathize... (I like the berries pic).

in reply to Hoping_to_Heal

What a coincidence !!!

I did residential treatment for 5 weeks at Rogers in Wisconsin.

I had done well with my ERP over there, but when I came back home, all my symptoms had returned to its severity.

I can relate to you about how difficult it is to sit with the anxiety.

Most of the time, I am struggling, and just end up checking, repeating, counting.

We will keep trying together.

DeathtoOCD profile image
DeathtoOCD in reply to

Where in Wisconsin? I actually did residential in Wisconsin too. I am sorry to hear about it coming back when you got home though, I mean I guess you just have to try and apply what you learned as best to your situation as you can, maybe try to change thing up from time to time see it that helps, I know that can happen sometimes when you get back to the anxiety provoking place. Do have people that you still have contact with from the program, if so maybe reach out to them.

in reply to DeathtoOCD

I did residential treatment at Rogers program.

I did not have any follow-up therapy after I returned home.

I do not have any contacts of people from over there.

DeathtoOCD profile image
DeathtoOCD in reply to

Well, sorry to hear that. You learned thing at the program right. Use what you learned and try to work to apply those two your life. If not, do you still have access to your OCD therapist, though would be the best option.

in reply to DeathtoOCD

I do not have access to an OCD therapist.

DeathtoOCD profile image
DeathtoOCD in reply to

Sorry to hear that, I guess it is just down to what you can work on even the littlest bit helps.

Hi! I am glad you reached out. I can totally relate. I have several ocd components but definitely the worst symptoms are with contamination and checking and so many times i feel like a hampster on a wheel. I try to beat one down and the other is right there to take me down. A bit like a whack a mole. I sooo wish I could get a break and the only way is through sleep. Just remember you are not alone. I hope that at least gives some comfort!!!

Thank you for the reply. Yes, I know how you feel. It does often seem that my only escape is through sleep as well. Hug*.

Hi! I can totally understand and relate to your situation. I was totally helpless and hopeless a few months ago. Why would I have to fight all the time? Now I have realised that I dont need to fight it at all because I am gonna defeat it without suffering at all.

As I am writing this, I must tell you that I have just started healing but the confidence in recovery has now surged up to my real self. However disgusted or disheartened it might feel, we dont have any other option than to restore our real mind again. U cant afford to give up hope because you dont deserve to live like this.

I am informing you that I am not a professional at all. But I know through my personal experience that even if the meds seem ineffective, we have to adhere to them seriously without skipping a single dose. And for therapy, the book "BREAK FREE FROM OCD Overcoming obsessive compulsive disorder with cbt"is Magic! We have to do it anyhow in order to cure. All the best!

We are friends now.

You are not alone. I´m sorry for your struggle.

I also have severe OCD - I´m 49, and have had the same thoughts in my head for 20 years...it is terrible. But never have to give up. I have found mindfulness and meditation to be helpful, in addition to medication and ACT and ERP - but it´s a long journey with ups and downs. Sending you a big hug!

Thank you.

We are all here to support you as you struggle through your OCD issues.

Could it be that maybe your medication isn't quite working as well as you need? There are SO MANY different meds out there to try. I'm glad to hear you are doing ERP....maybe a change in meds would give you the boost that you need.

I've tried many, many medications, but I don't tolerate them well... I have done ERP in the past -- not currently -- but I didn't respond that well to it.

I am sorry you are feeling this way. OCD is a nightmare but there is hope. Exercise helps and the right meds. I have it too. When it’s bad it is bad.

Try looking up @ocd stories on YouTube. It is a wonderful podcast with informative docs and people.

Theocdstories.com

Hello! I am so sorry to hear your long struggles with OCD.. I have struggled with various subtypes of OCD over the years, yet not as extreme as my teen daughter (with more severe and acute subtype of harm/sexual violence intrusive thinking). I did learn quite a bit over the last year including the physiological aspect that may or may not contribute to exacerbating the OCD symptoms. My daughter did not have any results from SSNRI's nor other medications within this family or within the SNRI family. Come to find out, it was because her serotonin was naturally fine, it was other neurotransmitters that were "off" according to the comprehensive neurotransmitter/hormone testing she had taken from her naturopath. I would highly recommend having one taken to see where you might be at.. this comes in handy when attempting to locate a medication that aligns with your neuroplasticity. Glutamate has also been in recent research as a culprit of increased symptoms which is found in many dairy products.. it sounds like your "brain lock" is possibly in the fact that your body and mind physiologically are off, not so much your cognitive ability to process therapy.. I know that there is hope for betterment and pray you find what help you're seeking..

~Shawna

Thank you for the suggestions... Is the testing that you'd mentioned the same as genetic testing for medication compatibility? I've been thinking that I should have that done... And I hope your daughter can recover. I have grappled (and still do) with horrible harm thoughts. It's one of the most frightening symptoms.

Hi, I have had OCD 'tendencies' which appeared when stressed and anxiety for years. The last couple of years the OCD came and stayed and resulted in a lot of throwing things away due to chemical contamination, I wouldn't allow cooking in the kitchen for more than 6 months, I couldn't move or touch anything in the house without washing it / washing hands. I had to stop working, I didn't know how to function anymore. Thankfully was assessed by a mental health team, met a lovely psychiatrist and am now on Sertraline and quetiapine. Unfortunately a very long wait for a psychologist. I have had advice to try mindful eating (with maltesers instead of raisins) and to look at Jon Kabot Zinn for mindfulness and ACT on Youtube. Also advised to look at russ harris (ACT) . I have ordered the book 'the happiness trap' by Russ Harris but not started working on this yet. The psychologist who assessed me felt that ACT could be good for me as ERP doesnt work for me. I started seeing a psychologist privately who started DBR with me last week. I'm finding that hard to get used to. I have wondered about the eye movement treatment and may come back to that with her depending how it goes. OCD started to improve with less work pressure, meds etc but with increasing covid it is transfering back and forth between that and chemicals and its really hard to judge which anxieties and behaviours are sensible and not. I think it will be a long journey but hopefully we will all get there.

Hi, what does ACT involve, and what is DBR?

I can really relate to having more than one type of OCD. When I first started wondering what was wrong with me, why am I thinking like this, why am I doing these ritualistic things, I saw a list of types of OCD. As I’m going down the list, I’m just thinking check, check, check...I fit into all of the categories. I have counting, checking, contamination, hoarding, etcetera. It’s so overwhelming some days that I can’t even get to school because it takes me about 3 hours to get ready and out the door. Most days I end up not wanting to get up, because sleeping is the only time my brain isn’t racing with thoughts and overpowering everything I think. Anyways, I just wanted to say that I can deeply understand how debilitating it can be; and you are not alone.

Thank you... Well even though it takes you three hours to leave, at least you still can. (Actually, before I got sick, I'd take about 2 hours to get ready, so 3 hours isn't really bad). But now I've been trapped in my apartment, unable to leave because of all the ritualizing, for *2 YEARS*. I dread facing every single day...

HI all ur symptoms are related to OCD to come out of this you have to challenge with OCD. That u promise urself from god from today onwards I'm not gonna do anything repeatedly just stick to ur decision while doing this task while doing this u will get more anxiety and depression but after few seconds it will come down when u do this there is a chance of coming out of this fear u will recover

The problem is that my anxiety often will not go down or subside if I try to resist compulsions... The only thing I can do right now is to reduce them as much as I can, which isn't that much...

I can totally relate. I have jad OCD for more than 20 years. Everyday stuff is tolerable, but the real trouble starts when some important change hapoens in life. Then my OCD becomes intolerable. I recently almost had a panic attack. Hang on there, you are not alone and remember that, unfortunate as it is, its still just your mind doing this to you. Your real safety is not compromised. In fact, if it was to a serious enough degree, you wouldnt be experiencing OCD.

Hi

I am so so sorry to hear about your struggles with your OCD. What you describe sounds like someone who should really be receiving proper medical and therapist support.. The only advice I can offer which is very limited, is to try deep relaxation if you can, like body scan or deep breathing etc. if that is even possible. Do you try at all to sit with the intense feelings and believe me I know how hard it is to sit with that level of anxiety but as you would have learned all anxiety finally reaches a level where it starts to plateau thereby reducing the feelings of anxiety.

How are you doing these days?

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