My decision for deep brain stimulation

As you know by now, unfortunately I have been suffering from OCD for almost 8 years now, which unfortunately is getting worse and worse instead of better. In all these years I have tried many different methods of therapy (I will write separately about possible forms of therapy), which have not worked for me. I write it this way because it only means that it didn't work for me, but it doesn't mean that it doesn't help others with OCD, it's individual for everyone. Anyway, I had a conversation with my doctor from the clinic earlier this year about another form of therapy, deep brain stimulation. This conversation led to a further coversation with the neurosurgeon in charge, because the deep brain stimulation is a surgical procedure on the brain, more about that in a moment. In this conversation we also talked about the possible risks and everything about deep brain stimulation and I then decided to have the surgery. Since the procedure needs some preparation, I had to wait some time, but on November 21 it is finally time and I'm looking forward to it.

 

What is the deep brain stimulation?

The deep brain stimulation is performed in patients with severe OCD. This mainly concerns those patients for whom no improvement of the compulsions could be achieved so far with all available psychiatric and psychotherapeutic therapy methods.
In deep brain stimulation, two high-precision fine electrodes are inserted into the brain in a surgical procedure. An electrical pulse generator, practically a brain pacemaker, which is inserted under the collarbone, delivers a continuous current pulse into the brain via the electrodes. This changes brain function and results in a reduction of compulsions.

In addition to obsessive-compulsive disorder, deep brain stimulation can be used for Parkinson's disease, Tourette's disease, dystonia and epilepsy.

 

 

Does it heal ocd?

No, deep brain stimulation doesn´t cure OCD. But it suppresses it.

 

Is the surgery risky/dangerous?

As said before this form of treatment is only used in very serious cases.
Of course, there are risks with any surgery, and I was informed about them. Nevertheless, the chance of a normal, free life outweighs the possible risks for me.
The deep brain stimulation has been used for 25 years, so there is a lot of experience in this field and I trust my doctors.

 

Is the deep brain stimulation only for ocd?

No. As mentioned earlier, the deep brain stimulation can be applied in various areas. Originally this treatment actually was developed for Parkinson's patients. However, it was then discovered that it can also help in other areas of mental and neurological illnesses and research began into this.
For depression, it is more common to use medication or even ketamine as a form of treatment.

 

Feel free to ask me questions about it if you have any. I will answer them as good as I can. 💙

FAQ - OCD

I haven't written anything here for a while now. That was primarily because my OCD has become worse and worse, it is very difficult at the moment. In fact, it's so bad now that I can't even be admitted as an inpatient because I feel so dirty that I would otherwise carry the dirt to the clinic. I'm moving at the end of September and hope that I'll feel a bit more comfortable in the new environment then, because I'll be back in the clinic in November, but more about that in another post.

I started this blog, after all, because I want to educate and raise awareness about my disorder (and mental illnesses in general) and now I've noticed that I've never really done an FAQ about what OCD actually is, so I want to do that now :)

So let's start:

What's OCD/What does OCD mean?

Obsessive-compulsive disorder, shortly ocd, is a common, chronic and long-lasting disorder in which a person has uncontrollable, reoccurring thoughts ("obsession") and/or behaviors ("compulsions") that he or she feels the urge to repeat over and over

What are the symptoms/signs?

People with OCD have symptoms of obsession (also called magical thinking) or compulsion or both. They have no power over it, it is uncontrollable. The symptoms significantly affect the everyday life of the affected person, such as work, school, personal relationships, and cause considerable stress.

Obsessions are repetitive thoughts, urges or mental images that cause anxiety. Common symptoms are:

- Fear of germs and contamination 

- Unwanted forbidden or taboo thoughts, which may revolve around sex, religion, or harming and hurting others, for example 

- Aggressive thoughts directed at others or oneself

- The tormenting thought of wanting to arrange things perfectly or to align them symmetrically 

- etc

Compulsions are repetitive behaviors that a person with OCD feels the urge to do in response to an obsessive thought. Common compulsive behaviors are:

- Excessive hand washing/showering or cleaning.

- Ordering things in a very specific, precise way

- Excessive and repetitive checking, for example, repeatedly checking to see if the door is locked or the oven is off 

- Compulsive counting

CLINIC DIARY - Weekly Post #4

Here comes my weekly update :) 

This week I had an office appointment again, where I was, again, meticulously careful not to touch anything. What I think I have not told yet is that I have a special outfit only for such appointments, so a pant, a shirt and a pair of shoes, because I can´t wear these clothes otherwise and even washing them in the washing machine gives nothing to it, the clothes are still dirty for me. So I can only wear this outfit to these appointments.

Unfortunately, I have noticed that my OCD is getting stronger again, which mainly manifests itself in thought compulsions, which then in turn affect the compulsive actions. For example, there is always a small fruit fly flitting through the apartment, which of course sits down everywhere. Yesterday I wanted to chase it away, because it was heading for my face, and I touched it with my hand. Now I had to go wash my hands because I touched the fly, which my OCD considers dirty. Also, today I didn´t get a real feeling of cleanliness in my face from showering, which I always have to do after I have eaten something, and that although I soaped and washed my face several times in the shower.

My mind is racing again at the moment and I can hardly get a grip on it. Racing because these obsessive thoughts are constantly circling and just don´t stop and that although I have tried so many medications now, it is really frustrating and also very exhausting. It just takes so much energy and I´m constantly tired and unfocused. Unfortunately, it also starts again that I don´t really enjoy anything, so it is even harder to get the time around.

So this week is, unfortunately, not very positive. I already wrote an email to the doctor at the clinic on Wednesday, asking if I could be admitted again, but unfortunately I haven't received an answer yet :( I hope I'll get an answer tomorrow. In the clinic I could at least eat something without having to run to the shower.

What I have managed this week, however, is to finally upload a video on the topic of OCD on my Youtube channel. Who has not yet seen it, look in gladly times. In the video I also explain again, how that started with the OCD and how it has increased up to my current situation :) 

Long story, no point :D Kisses to you and see you soon :)

VLOGS - a new video on my channel

Now the time has come, I have uploaded a video again on my Youtube channel on the topic of living with OCD, in which I explain, similar to here in my first post, what it's all about and how the OCD has developed. I would like to revive the channel in the future with videos on that topic to reach even more people and to raise awareness to finally recognize mental illness as such and no longer measure with double standards.

I would be happy if you stop by the channel and maybe share the video and the blog as well, so we can reach more people with it. 

So far, have fun with the video and see you soon😊💕

-> Video is in german, english subtitles will follow soon

 

CLINIC DIARY - Weekly Post 3#

 

Now it's that time again, a new weekly review is coming :)

I have now decided to post this always on Sunday. This week was actually little spectacular I must say. I had another office appointment, which was yet again quite an overcoming and I had to be scrupulously careful again not to touch anything. My OCD itself is somehow worse again, which frustrates me very much and I'm sitting on hot coals, because of the doctor's appointment, which I have on 09.09.22.

Despite the fact that I speak so openly about my OCD, this is still afflicted by shame in some situations and so I don´t dare at the moment, although the OCD is getting worse again, to call the clinic again. It somehow feels like failure, and surely some people with psychological problems can understand that, when I've just been discharged for a week and can't get it together again. Somewhere I know that this is not true, that this is not a failure, but it is somehow a double-edged sword for me.

I´ve made a no-bake cake this week, despite the current situation. You can find the recipe here, on my food blog (in german)

But now I need your help, I would like to do a Q&A on the topic of OCD and I would like to know what you are interested in, what questions do you have, what do you want to know?

Btw, on the subject of OCD and deep brain stimulation, there are 3 very nice videos from the Youtube channel "Die Frage". Here, an OCD patient was accompanied for a longer time on her way up to her surgery and the first activation of the pacemaker. It is also explained very well what deep brain stimulation actually is. You can find the videos below. -> The Videos are in german.

CLINIC DIARY - Weekly Post #2

 

So here comes my weekly diary post :) 

I was discharged last Wednesday, so, half a week ago, also to test how well I am coping at home. I have to say, it's so-so. After cooking/baking I always have to shower, so there is even a deterioration, which is of course then again associated with a lot of planning, what I do when and how. Generally when I go outside I currently have to shower when I come back, it's a tragedy, really true -,- But at least I no longer need 3 hours in the shower, that's at least something and also I survived my two visits to the authorities, which I was so afraid of. However, I've also been totally fussy about not touching anything, that was quite exhausting.

What is still pending is to successfully complete the initial registration at the university, to go through another administrative procedure and to find a psychiatrist for further care. At the beginning of September I have another appointment with a doctor from the clinic I was in regarding a treatment method for the OCD, but I will report on this in more detail in due.

Shopping goes quite well, but is also associated with showering and especially with the preceding research, whether the products come from Germany or not. I still have problems with that. I can´t use anything that comes from Germany, because whole Germany triggers me. I'm telling you, to have to research all the time is quite exhausting and tedious.

So far, these were actually the most spectacular things this week. I´ll try that I now set a day on which the weekly post comes :)

From therefore, have a nice day and until next time :)

P.s. I also have a food blog (still only german till yet, I work on it, to do all the posts in english too) on which I now also try to post more regularly again, just published a new post on how to make basil pesto itself :) Look over

CLINIC DIARY - Weekly Post 1#

 

Hi to ya all 😊

I think I'll handle it like, that I write weekly a kind of a diary or news report 😊

First of all the news that I'm now officially living in a new apartment in the student dormitory and feel really comfortable there. I've already had two night outs from the clinic, i.e. I go home early on Saturday and come back by Sunday evening at the latest. Have now also twice made delicious pancakes and cooking itself goes well. The only negative point about it is that I have to shower after cooking because I feel dirty, washing hands alone is no longer enough. So the OCD has worsened in this regard, because even once "only" washing hands, which also took an hour, was enough. I also go to the zoo once a week and take a nice big walk through there, watching the animals and eat a piece of cake in the café there.

CLINIC DIARY - Two months course related to OCD

 

The weekly writing may somehow doesn´t quite work 😅 Sry for that 😅

Actually, I wanted to report every week how things are going, whether the treatment is progressing, etc. Just like a little diary about my life with OCD.

Unfortunately, sometimes you take a step back instead of a step forward and that's how it is with me at the moment, the treatment is not making any progress but stagnating, which, as I'm sure you can sympathize with, has made me very sad and also desperate, especially when I've heard about the progress of the others. For me it is a two-sided coin, on the one hand I´m very happy to see the progress the others have made and how much better they are now, but on the other hand it makes me sad that I can´t report any progress or only very small progress. Probably some of you will think that even small progress is good and a success and you are absolutely right. This is a construction site of mine, which certainly has a lot to do with my past, where nothing was good enough. I must learn to see even small progress or success as such.

EXERCISE - inner garden

 

First, I want to introduce you to an exercise called "the inner garden" (you can also use another place as a garden, but I know it this way).

Exercise:

Sit comfortably, preferably placing both feet well on the floor. Now close your eyes and take a few deep breaths, breathe in and out, relax. 

Now imagine yourself walking along a path. Trees and bushes grow to the left and right and the sun shines pleasantly warm. In the distance you hear a stream splashing, look for this stream, can you see it? There is a bridge over the stream, so you can cross it. 

After you have crossed the stream, the path leads to a garden gate. You open it and go through. Now you are in your inner garden. How big do you think your garden should be? What kind of border should it have, a wall, a hedge or a fence? 

CLINIC DIARY - First month in the clinic

Well, I actually wanted to do weekly postings, but somehow didn't make it. Nevertheless, I would like to summarize my experiences so far in the clinic.

At first I had very bad experiences in the first clinic, despite many phone calls with them. This brought me to the clinic where I am now, and that was a good thing. Here I was treated very differently, much more friendly and understanding. I felt that my illness was taken seriously and understood. I was also accepted directly on the day of my spontaneous arrival here. It was a load off my mind, I can tell you.

I have been here for about 1 month now and have also been working with a psychologist since then, that I´m really happy about. She is a treasure and has achieved what no therapist or so has managed before. Since Wednesday, 09.03.2022, we have started with the exposures, meaning that I face the OCD - I will go into more detail about the exposures in an extra post - and I have a good feeling with it. I think if I continue to work on it with my psychologist now, it's going in a good direction. With the medications I´m still in the adjustment, there we still have to see what really works. With the medications I´m still in the adjustment, there we still have to see what really works. In May and June I will have a so-called OCD rotation here, but one station higher.  This is an 8-week program that focuses on compulsions, depressions, etc. I have to see what really works. 

To come back to the admission and the daily routine in the clinic. I arrived here with an underweight of 47 kg. My hair was dull and lacked volume, my skin looked pale, almost grayish, and sallow. In the meantime I am back at a weight of about 53 kg and my skin and hair look much healthier again. The clinic food can be marked in the menu every week, which one would like to have. Of course, I also get folic acid and vitamins, but I still think it's really great. 

WELCOME - Hi there

Well, where do I start. I've been thinking for a long time about what would be a great first post, but somehow it's really difficult to start. But probably it would be good to start from the beginning, with me and my story, so that you first know what it's all about and what made me start this blog.

I'm Vivian, 30 years old and currently a Media Artist student. With this I have found my absolute dream job, my passion, and even if this all sounds fantastic and as if everything would be perfect and happy, there is something that has a lasting negative impact on my life, my monster in my head. This monster is called OCD, more specific a washing compulsion, and it has been living up there for about 5/6 years now. Initially it was small, a shadow ghoul that flitted through the corridors of my mind castle from time to time. But the shadow grew with time and became bigger, darker and more evil and one day it happened that it became so big, a big dark cloud with demonic grinning grimace and huge claw-like hands, that it got the upper hand and caught me completely. Since then I have been chained by my arms and legs in the dungeon of my mind castle and can´t get free. The monster, however, grows and grows and grows, feeding on my energy and thoughts, and as I grow weaker and weaker, the monster grows stronger and stronger.

"But how does it manifest itself, what does the monster do to you and what is a washing compulsion anyway?", some will ask.

Unfortunately I can't say what the decisive trigger was, but it started with the need to wash my hands over and over again, more and more often and for longer and longer periods of time, until the skin on my hands tore open and started to bleed. At that time I didn't know what it was and even less how and why it started, didn´t figured it out till now. I know what image I associate with it, but not the decisive trigger at that time 5/6 years ago. My aunt then told me, after I confided in her, that this is called washing compulsion.