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.
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Hoping_to_Heal
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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
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...
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/
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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.
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
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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.
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or so believe, after EMDR...beforee I had no idea. Sorry to be a pest. I empathize so much.
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.
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 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.
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.
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.
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?
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...
Dear "Hoping_to_Heal" and "DeathtoOCD". You are both talking about neurosurgery in treatment of severe and therapy resistant OCD. I have had a neurosurgical operation called "CAPSULOTOMY" which is almost the same as this "Gamma Knife" you mentioned here, dear "Hoping_to_Heal". I live in Europe and I've also read a lot of different neurosurgical operations (like Deep Brain Stimulation = DBS). I got a GREAT HELP from this capsulotomy. What do you think, would you like to discuss this issue here on-line?
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.
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.
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!
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!
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.
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..
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.
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.
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.
hello, I’m sorry to hear that you are battling OCD this way. I understand how you feel. At many times OCD can feel so crippling and it has kept me from doing many things.
OCD can be difficult, but it will make you stronger when you start to feel better. Take each small victory in strides. And know you are not alone at all! I have many different ocd thoughts, sometimes I get bombarded with multiple ones, and sometimes (like I’m experiencing now) I have one that just gets super stuck.
I am praying for you, and know that with ocd trying to annoy us, we have to annoy it back by not seeking certainty, and leaning into uncertainty. I know it’s so much easier to write and hear then to actually do. I know what to do, but I too find myself constantly doing the opposite of what I need to because it’s what’s our bodies naturally do. But just pause, think about it for a second, and really focus on ocd as being something external and you are yelling at it, telling it to F**** OFF!
Thank you for the kind words and prayers -- I certainly need them. Yes, it is extremely difficult -- and often nearly impossible for me -- to deal with the uncertainty caused by this very intense anxiety. I have seen several different therapists over many years, but most of them have been incompetent, lacking the training/expertise required to treat the types of complex fear and doubt involved with OCD. And my options for therapy are even more limited because I live in a small town with only Medicaid for insurance.
I'm so absolutely EXHAUSTED, and I do feel alone most of the time because I'm such a severe case -- as in *not able to function or live any kind of semi-normal life*... So I feel especially alienated, even among many fellow OCD sufferers.
Hi. I have read here, you earlier told about neurosurgery for severe OCD. I have undergone operation called capsulotomy, and it helped me a lot. Could we discuss this here on-line?
Hi - Thanks for reaching out. Sorry about the delay with my reply; I've been meaning to get back to you. Yes, I definitely want to learn more about your experience with neurosurgery for OCD. I've never actually talked to someone who has had this type of procedure done.
I'm really in dire need of neurosurgery (Gamma Knife) because my *extremely* severe OCD has not responded well to the other typical treatment methods, and I'm essentially nonfunctional. I've been in this condition for over 15 years now... But I have no idea how surgery could actually happen for me, because of such problems as cost and lack of accessibility.
I can understand that. When I was in college I lived where there was a really great doctor, and he took insurance. So it was really lucky of me to have that. But I discovered when I moved back home after college, the state I live in does not have the same care. Many of the psychiatrists do not take insurance (or they have forms that you have to submit to get reimbursed, but front the costly bill first) and the places that do take insurance just run people through like a conveyer belt. A quick check in to see what’s happening and then they refill the medication, or try to push other medications that maybe I’m not comfortable with. It’s been hard. Especially because right now I’m going through a point where ocd is loud. So trying to get a doctor that can properly adjust my medication and understand is difficult.
I’m not sure how it would work for you with online telemedicine sessions, but I know that option has been something I’ve seen growing over the years. At least allowing people more options to more doctors from the comfort of their home. I hope you have been feeling better.
Hello and thank you for your message. I've read through all your messages here in this chat, and I think really can relate to you. Was it so you live in Canada (or the US) and have English as a mother tongue? I'm not a native speaker of English even though I'm a language teacher (of Swedish [my neighboring country]). So, it is very much possible I make grammatical mistakes when I write English.--- But then the main points. I have to say that I, perhaps, have understood your situation, because it is almost the same as I had tens of years ago. Unfortunately, I'm a bit busy at the moment, but I really think I'll try to concentrate on your case. And even though I now only can write this shorter message, I WILL ABSOLUTELY contact you as soon as possible.
2) You mentioned "Gamma Knife", which is one of these 2 versions of CAPSULOTOMY and the versions are: a) thermocoagulation capsulotomy and b) Gamma Knife capsulotomy.
3) Currently, you are LUCKY when you live there in Canada/the States, because it was in 2009 when FDA (= Food and Drug Administration) accepted the newest form of neurosurgery, DBS. And here we can add that the citizens of these countries have the best available chances to get a neurosurgery for severe OCD. For example here in Europe, the situation is worse, which means that e.g. in Sweden (where I got my capsulotomy) where they have a high-tech center in neurosurgery in the city of Umeå, they only have a capacity to conduct under 10 neurosurgical operations per year for OCD.
4) You can now read the information I gave in my attached link. And on Google you also can find information in English at the Swedish hospital. The chief neurosurgeon is Patric Blomstedt. I've contacted him several times.
I’m sorry I’m only just catching up on the threads but the above is most helpful, albeit I’m in the UK I’m not sure I’ll be able to get any such help.
EMDR, CBT & ERP treatments I’ve tried I’ve largely had to fund myself to date as the services and waiting lists are diabolical. I have been looking at latest developments.
Thanks so much for your response. I'll be waiting to hear more from you. Please share as many details as you can about your situation. I will check out that link that you posted as well. (And your English is just fine).
To give a bit more clarification, I live in the U.S. -- Michigan... I am familiar with DBS, and a doctor at an OCD treatment center actually had wanted me to have that surgery, but I would never consider that since it is so highly invasive. I'm only interested in Gamma Knife/radiosurgery.
Hi! Sounds very nice, I've found a soulmate in you. I have to say I appreciate this so much. Ok, you prefer Gamma Knife - I don't remember if there is any info on that method in the link I gave to you. You live in Michigan, is it located on the east or west coast or in the middle? I ask this because I know they conduct Gamma Knife at Butler Hospital in Rhode Island (is it in New York?).Yes,I know there are few aspects which are difficult regarding neurosurgery: it's expensive and possible only at few centers in the world. For example, I once read that the insurance companies are not very willing to pay. - - - In my case, I remember that the situation was so hopeless (e.g. I had been a long, long time in a hospital) that they really had to decide what to do, and they paid. Well, again I say I'll continue when I'll have time. Take care!
Hi! I just like to tell you something about those hard years with the severe OCD in my life. I've seen here when somebody has told that the best moments of a day are when you sleep. I also remember the same: how difficult a day was, it became easier when you were asleep. But it also was difficult with compulsions before you could go to bed - enormous checking etc. And then again in the morning, it was difficult to get out of bed because you knew that the WHOLE OCD would start immediately.
All of my days were full of obsessions and compulsions: now, I must say that the most difficult symptoms were various compulsions when you had to either wash your hands or something else. And it took about 4 hours to take a shower.
I must say that I often remember flashbacks from those times - and it's always difficult when you think about them.
Hi! Yes, my story here deals with the PAST. I got the only and best help for my severe OCD in 1992 when I was sent abroad (at that time NOT possible in the country where I live). I underwent a neurosurgical operation which is called a STEREOTACTIC ANTERIOR CAPSULOTOMY. It gave me a big help meaning that e.g. my excessive washing rituals (e.g. hand washing the whole day) disappeared in the operating theatre. I do understand that surgery is the ultimate way to treat OCD - and there still exist misunderstanding and outright hatred among many psychiatrists to refer their patients to evaluating for surgery, because all we remember the horrifying lobotomy which caused a lot of suffering. On the other hand, the health care systems are nowadays often so overloaded and lacking personal that the official sector just CAN'T offer OCD sufferers the care they need in cases where OCD is the worst. And on the private sector for example in the U.S., these operations are so expensive (at its peak about $100.000) that few persons only have that amount of money.
Hi again: I've been reading your posts, and if you don't mind me asking, can you describe your OCD symptoms in more detail before you had surgery, and also tell me how they had improved afterward?
I can *absolutely* relate to your past struggles with hand washing and showering, and also to the feeling that your only escape was through sleep. I wash my hands excessively (often 25+ times) whenever I try to do anything, and a shower is hours & hours of exhausting work for me. Just using the bathroom can take me several hours as well.
I believe at this point that most likely, the only truly effective treatment for my extremely severe OCD -- and possibly for my Depression as well -- would be radiosurgery. But as I said, that seems nearly impossible because of the cost (I highly doubt that my government insurance would cover it), and also because of my lack of nearby access to any qualified hospital that offers such a procedure... And this reality is just terribly tragic -- because surgery may be the only treatment that will ultimately save my life.
Hi again! Thank you for your message. You had few questions:
1) My OCD symptoms before I had surgery.
It was an every day hell: When the symptoms started during my university studies, I couldn't recognize them as an illness, but I started using more and more time of a day in order to do the compulsive rituals. I remember quite well when my parents came to me to clean my apartment and my reaction was simply that they "did the opposite" - even though their idea was a positive one. In such cases, I used even the following night to "clean" everything (that basically was CLEAN). I have to say that I had those compulsions tuned to excesses -> after them came my first attempts to commit suicide and that was like a nightmare after waking-up in intensive care after a drug overdose.
2) How my OCD symptoms have improved after the surgery?
Well, in general, there is e.g. one measure which is applied in this kind of questions, the Y-BOCS (the Yale-Brown Obsessive Compulsive Scale) which calculates how much you have residual symptoms after an operation. Depending on the used treatment method, the result can be around 40-60%. So, if you have a smaller indication you can be happy with the result. I do think the doctors in the U.S. know these figures. So, I encourage you to tell this issue to your doctors, but if not available so there is this International OCD Foundation you can use. And for me outside the U.S. it has been a remedy.
I feel exactly the way you used to, I dread everyday I literally feel like I’m a warrior in battle from the minute I open my eyes I’m grateful if I manage to get through the day. It’s so kind of you to share your experiences.
It's good to have here other persons who also live in Europe - most people here live e.g. in the U.S. I live in Finland. And I also know how DIFFICULT it can be to get help for this severe form of OCD. I was totally hospitalized (6 years in a psychiatric hospital) until I was sent to Sweden for the neurosurgery. In Finland, it was NOT possible to get that help in 1992. I'm a bit surprised because we often here think that the United Kingdom is a very advanced country e.g. in terms of these medical applications. And is it there like in the U.S. that the high-tech medical units are mostly privately run (and so expensive service)?
Likewise & it’s really good to connect with you & especially given your understanding of just how debilitating the illness can be. As I posted in my thread it’s ironic I have a psychology degree & can help others navigate through but struggle immensely myself.
My OCD was brought about as a result of a trauma encountered in my 20s in 2001 albeit I suspect I had the propensity for it given some of my traits earlier in my childhood. Life events have exacerbated it to the level it is now. It is interesting the reference you make to advancements in Europe &the UK, I believe you are right, the problem however is that the ‘System’ doesn’t adequately cater for severe OCD and there is stringent criteria to ‘fit into the box’ which unfortunately I do not.
Some days I cannot see a way out of the despair & wonder if I’ll ever live again. I am now severely affected by the illness and cannot do the basic things. I pretty much just manage to ‘exist’ I’m just exacerbated & exhausted. You have given me some hope.
If it’s not to imposing & you don’t mind my asking (apologies if you’ve covered it off previously) have you had the support of friend & family during your journey? How did you find the strength.
It appears the treatment whilst radical, was worth it as it’s completely transformed your life.
Hello! I'm pleased when you say that I've given you hope. We have in common our academic studies. I've not been able to work as a teacher in school, but have you worked as a psychologist? And I also had these traits earlier in my childhood: for me, it was often important to get good grades at school which I've considered as some kind of perfectionism (related to my OCD later). I remember that the university years were awful. It was in 1986 when I left the university -> my first attempt to commit suicide -> then the 6 years in hospital started. Despite these years of misery, I finally succeeded to get my Master's Degree (but AFTER the surgery in 2003). You asked about whether I have had support of family or friends - here I can say that my relatives have just NOT understood my OCD at all. And I can add here that I've been living almost ALONE after the operation in 1992 - it means approximately 30 years. I've been trying hopelessly to find some other person somewhere in the world with the same experience of CAPSULOTOMY surgery for therapy resistant OCD. The results have been modest.
Hey there. Nice to hear from you again. It’s kind of you to share the details you have. In regard to your latter point I suspect it’s due to the treatment being so limited.
Hearing your earlier encounters makes me feel like someone actually understands where I am right now. My family (I don’t have many members left) but the few I do have, have taken no time to try to understand my illness and often refer to me in a somewhat of a disparaging & derisory fashion. It certainly doesn’t help with recovery, and I no longer have any relationship with my brother.
I’ve read a book recently trying to empower myself (The Mountain Is You: Transforming Self-Sabotage Into Self-Mastery Paperback – 29 May 2020 by Brianna Wiest (Author). The OCD books now are so basic & I am sure I’ve read them all now.
I didn’t pursue a career in Psychology but went into a different field as I majored & got a BA Hons in Human Resources so pursued my academic studies further (MASTERS & CIPD Diploma) and this has been the foundation of my succession & onward career. I’d hoped to run my own consultancy Business one day but feel like time is running out for that to be reality. OCD has taken so much, so many avenues & dreams & possibilities.
I feel like something radical needs to change, but given I struggle to get from one day to the next I don’t know what that might be! I keep hoping I’ll become that frustrated that I’ll relinquish control but given my neural circuits in my brain are so transfixed after years of habitual behaviour it feels impossible.
I’m so sorry for this post it feels negative but I really am struggling.
Hey. I just read your post. I think I'll concentrate on answering you a bit later. BUT, in principle, I do understand your situation which is quite complex. If you know any way, could you even a bit enjoy this Sunday? I'll keep in touch!
thank you. And apologies I don’t want you to feel obligated to respond I know you must be busy with day to day life so of course whenever it is possible
Hey! I put a search on Google: " Neurosurgery in the UK". And they showed these ones: "University College London", "UCL Queen Square Institute of Neurology" and "the National Hospital for Neurology and Neurosurgery". And the following links: - uclh.nhs.uk
- ucl.ac.uk And you can also contact them via UCL Media Relations.
In that hospital, they've conducted both ablative (e.g. the capsulotomy I've undergone) and Deep Brain Stimulation (DBS). I saw there an article "Targeted deep brain stimulation reduces OCD symptoms (2019)" and the name of a world-known neurosurgeon Marwan Hariz (whom I've contacted via emails). In general, you can see in literature that stereotactic ablative neurosurgery (capsulotomy, cingulotomy, subcaudate tractotomy, limbic leukotomy) is more common for therapy resistant OCD than the newer method DBS around the world.
And I've read some articles on how the FDA (Food and Drug Administration ) has approved DBS only under a Humanitarian Device Exemption in 2009 in the U.S. And later, many neurosurgery associations have stated that insurance companies often deny the reimbursement for the big costs of this operation for a single patient. In general, the neurosurgeons wonder why insurances refund the costs for patients who undergo a DBS for a dystonia but NOT for OCD.
As you identify funding for this treatment most frustratingly is going to be unlikely I cannot even get funding for one of the specialist OCD hospitals, the 3 below I’ve tried
The clinics accept me subject to funding but after long drawn out battles they decline through some loop hole. I even moved area in the hope of access to better services & have contemplated even moving Country if I get better accessibility. Perhaps I should email the specialists directly. What do you think?
I appreciate each individual is different but have you encountered any side affects of treatment. Do you now live life relatively symptom free?
It’s really gracious & amiable of you to continue to offer your learnings to others in need.
I’m sure many in the forum, myself included can get comfort in knowing there is hope, particularly in treatment refractory cases. I’d wish I’d known much earlier on before OCD really took a hold what I know now and I hope also to help those who are in premature stages before it advances to debilitating levels which make it almost impossible to function each day.
Hi. I looked at those links you've sent and was thinking whether it could be possible for you to email the specialists directly, as you asked. As I've told you there is one neurosurgeon in this data, Marwan Hariz. I remember when I wrote an email to him and he answered quite soon. I could recommend him, you could find on Google his Bio and profile. This other name, professor Paul Salkovskis is a world -known specialist on OCD. I have not contacted him but I've often seen him in literature.
You asked about any side affects/freedom from symptoms in my case. I'll answer this question a bit later.
Yes I’m very familiar with the workings of Paul having read all his books. I’ve tried to reach out to him without success. I’ll search Marwan Hariz as you recommend & will keep you appraised as to how I get on. Hope you have had a good day.
Hello. Have you found information on Marwan Hariz? He retired from UCL in 2018 and after that been emeritus at Umeå Hospital in Sweden.
Your questions on side affects or freedom of OCD symptoms after my surgery are questions I've been thinking a lot. As to the side affects, I can say that during a short time after the operation (under observation in the department in Finland) I needed sleep more than usually, and I had a bit weight gain. But it went over. And the most important issue was that I had NO CHANGES OF MY PERSONALITY - the topic often debated in this context.
And the other aspect: How about residual symptoms after the surgery? I can admit that my result was not a 100% freedom - and as far as I've understood in literature, it is often so that a person can have some symptoms especially if they are triggered by some unpleasant issues. But anyhow, I'm pleased when many more time-consuming compulsions almost have disappeared (e.g. handwashing for hours, many hours in shower, almost impossible to get out of your apartment etc).
You can well ask if you are more interested in some specific compulsions.
Sorry, I forgot to describe how my symptoms have improved AFTER the surgery. My life is simpler now when it only takes a few minutes to go out from my apartment. And in general, many time-consuming ways of behaviour have become easier to do. I've discussed with the nurse who was at work here in the local hospital in 1992.He has said that my result (according to the Y-BOCKS) depends on whether the actual day is WITH or WITHOUT stress factors - the result is better when I'm not stressed. So, there is some variation in results of my surgery. And one aspect is quite important - the same nurse has said that I haven' t had any changes in my personality. And this is an important issue to remember because those who, in general, are against surgery often use this argument. And I also can say that the surgery made it possible for me to write my Master's Thesis AFTER surgery and so finish my studies. This could not have been possible without surgery.
hello there…I’m a new member of this OCD society from Egypt. My English is not fluent at all but hoping that you can understand me. I have heard your story and am so sorry for you and your suffering. I wanna start my words by saying that you are a true hero. your suffering stars for a very very long time and guess what you are still here asking for hope. and here heroism is reflected since you still have hope and never respond to your bad thoughts. I also have extremely severe OCD with a family history of both OCD and schizophrenia .my suffering has started 1 year ago with horrible thoughts about harming others and many religious thoughts which I can never accept. I feel like my brain can’t stop thinking about every, everything but in a way I refuse .my life become like a hell on the land. It is like I have the brain of another person not me at all. The Obsessions exhausted me and my brain. It sounds like something happen with my brain. I’m always under severe stress and very severe anxiety which never goes away or fades. like a motor with no OFF button. I never respond to medications whatever their class is. your story touches my heart and resembles me somehow.so you are the first one in this group to share my story with. I told you about my short story about one year of suffering so what about you who suffers for more than 10 yrs .you are really super superhero and great regards to you and your struggle. I wanna tell you that you are not alone and we are all beside you. finally, I wanna tell you to keep hoping cause we have nothing except hope, dreaming, and definitely God. and god never lets us alone, remember that well. This is a reminder for you and for myself too. only one other thing to tell you about. that is there are many new treatment options, not just medications, exist and hopefully one of them will fit you.and remember that a wise man once said” From Suffering, hope arises”
Thank you for reaching out. OCD truly is absolutely exhausting, and I know the feeling of desperately wanting to shut it off like a switch, but never really being able to.
I have suffered from this disease for a ridiculously long time, but I don't feel heroic at all for that. Unless I decide to just end my life (which I have considered too many times to count), I have no choice but to keep enduring and trying to manage this misery the best that I can.
I truly hope you can find some relief soon, and that you won't have to lose so much of your life and peace to the THIEF that is OCD.
Dear hoping to heal, I note the post is a few years old now & I am new to the forum. I’m not sure if you are still looking to reach out but my symptoms are very similar and I’ve been battling for some 18 years having tried several of the conventional treatments including CBT, ERP I’ve taken assertive steps with meditation, healthy eating, and tried various SSRIs. My maladaptive coping strategies have resulted in serving as a double edged sword in that they have kept the OCD alive but helped me survive. I’ve lost years of friendships & nearly all my family members. I know how it feels to be isolated & debilitated. I do hope you have made some progress and some positive steps since your last post. Wishing you well but please do reach out if you wish to.
Hi! I saw your message and understood you also live in Europe, the United Kingdom. I've been discussing here with the pseudonym "Hoping_to_Heal". I can't guess whether you would like to discuss here with me or not, but I can say "I do understand persons with this therapy-refractory form of OCD". And this because I've also been suffering from it.
Hi there, absolutely I thank you also for taking the time to reach out and reply. Whilst naturally I would never wish anyone to endure the suffering OCD brings its great to not feel so isolated particularly as I’ve lost so very much.
Hi: Thank you so much for your message and for sharing some of your story with me. I rarely can find other people who have battled this illness for such an extended period of time (over 20 years for me at this point).
Yes, I understand and can completely relate to the frustration and hopelessness of trying nearly all of the standard treatments -- without much benefit or progress. And I also have suffered through alienation and incredible loss because of this disorder.
You are not alone in this *insane and unrelenting* inner fight with your own mind. Don't hesitate to contact me in the future. Best wishes to you always.
Genuinely it means a lot, as likewise I have met others with OCD but have never encountered people who have experienced it to the debilitating level, time period as I.
I often find on OCD forums I’ve attended in the UK that I am able to navigate & support others as mine started out with a much lower baseline in my 20’s and if I’d known what I did now I know that it would never have reached this heightened level. It took 7 years before I was even signposted anywhere & by then my maladaptive coping strategies were well underway with me simply doing what I could to get through each day which of course didn’t in the long run serve me well. I managed to hide it for a number of years before it had taken such a hold that people started to notice.
Somewhat ironically & with frustration I have a Psychology Degree & have read all of the reputable medical journals & OCD books yet I am still stuck. I have spent an inordinate amount of money investing in self help & have tried relentlessly to keep putting one foot forward & be assertive but my tenacity & resilience is now lost. I don’t know if you can resonate with this but I’m being in my early 40s now I am grieving for all I’ve lost, missed opportunities. I feel like it’s taken everything. My family never tried to understand & have given up on me. It’s hard to stay encouraged. It’s so nice to meet people that actually do get it. Just basic functioning is now tough but I keep trying to fight.
Thanks yes I’ve been in contact with many experts in London & part of the OCD action networks since 2019 but I was turned down for funding for specialist treatment and you cannot privately fund for the centres in London. The funding is a long story and I even enlisted an advocacy support service it was a long drawn out bureaucratic process over 12 months, I’m worn out by telling the story trying to seek help. Thanks for your reply.
Hello I can relate to your situation. I'm now 66, but in my 20's and throughout my 30's I had crippling OCD mainly contamination. I was put on a high dose of Anafranil. It's an older drug and has a lot of side effects, but it was a lifesaver for me. I think I was on it for maybe a decade and my OCD seemed to wane over the years. I still get flare-ups and when they occur Anafranil is my go to drug. Thinking of you!
Hi. I've been reading some of this thread and wanted to ask how you are doing now.
I read that you have dealt with OCD for a very long time and don't know anybody else who has suffered as long as you have.
I am 48 and have had OCD since 15 y.o. It has gotten better and then worse, and okay again, then bad.
I am currently struggling with the thought part of OCD. I can't say they all revolve around obsessions, (some do of course), but I have mostly magical thinking OCD. Contamination, too, but not severe.
I was also wondering, what is severe OCD like? How does it impact your day? (Anyone can answer this if they would like to.) I believe I have severe thought problems that affect me all throughout the day.
I mainly have bad thoughts that lead me to do compulsions to stop something bad from happening to people or animals (the magical thinking). ANY person or animal. Someone walking down the street or in a car, etc., or seeing an animal, no matter where (in real-life or on TV ), or if I hear about a person (health-wise) or think about them in general, or see things in writing about someone/animals. On and on it goes.
Anything can trigger my OCD, any stimuli.
I can wake up in the morning, be fine, then if I see someone or something, mostly in movement, the thoughts start, then the compulsions.
If anyone can relate to this, please feel free to comment.
This is a shitty illness to have. It is consuming and I hate it!
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