Trigger warning: This account of Samara’s story contains references to suici*e and self-harm. Please DO NOT read if you are triggered by this type of content. There will be another version with the references to these topics taken out. (https://www.ticcersunite.com/post/safe-version-samara-s-story-living-with-pans-pandas-severe-tourettic-ocd). This is so that those who get triggered by this type of content can still be helped by Samara’s story, but we chose to leave these references in this version so that people can get a raw account on what it is really like to live with PANDAS / PANS.
This is a guest post from a wonderful warrior named Samara, I am honored to be able to have her share her story on this website:
Bambus the Brave?’ was my friend's suggestion.
I was looking for a name for my latest creation.
My psychologist and I had discussed why carrying on balloon modelling, but trying out new designs, could be my therapeutic activity. It stood a chance of being enjoyable, it would be a task that could be completed in approximately 2 hours, without creating a big mess to attempt to clear up afterwards. It would require the right type of concentration and I didn’t need to take a lot of materials out of dreaded drawers.
I had made various balloon animal designs over the weeks and today I created a panda, who meant a little more to me than the previous creations, so I figured he needed a special name. I threw a picture of my panda into one of our friend group chats with the request for a name for him. I had not mentioned why I had specifically made the panda and so when the name ‘Bambus the Brave’ came up, I was kind of surprised and sold on how perfect that was for the little guy.
During counselling I had asked my psychologist, have you heard of PANDAS? She replied she had not heard of it, but because of the person she is, she was interested to hear what I could tell her about it. It had been 4 years since I last came across PANDAS in my research. At the time it had caught my interest as the condition described was worryingly similar to my experience of whatever was going on with me, only I was older then what one would imagine with a paediatric condition. I saw that it was a diagnosis in the USA and well, when was I ever going to be well enough and have the money to go to America to see a doctor there? So I put it to the back of my mind and concentrated on finding out more about OCD.
But that day, for whatever reason, well actually because I felt I could be so open in therapy, having been lucky with the lovely professional sitting in front of me, I brought it up in conversation. I said I would re-look into PANDAS to share my findings with her at my next appointment.
My interest certainly peaked when I saw there had been progress made within those 4 years and that there was more information available, now also in the UK on both PANDAS and PANS. On my next balloon modelling session I would make myself a panda, this is when Bambus the Brave was born.
In the story that follows I like to share my experiences of living with severe OCD/PANDAS/PANS. I hope in sharing what I have gone through, that others going through similar circumstances will, first of all come to know that they are not alone in their suffering and that despite the long desperate road that it can take to try and find help and answers, life can improve again. For some there will even be drastic improvements, the right diagnosis certainly opens up possibilities.
I will be mentioning symptoms that perhaps are unrelated, but I like to (without making this unnecessary long) make it as complete as I can, because in sharing our stories things can be learned, and perhaps new connections can even be made, if nowhere else, maybe in your personal circumstances.
My childhood as a mini overview was reasonable to good. Like for most people, it came with some difficulties but my family consisted of loving people, I achieved good grades at school, I had friends…things didn’t look too bad..
Late around the age of 18 to 19, a cluster of severe symptoms came into my life. Things spiraled out of control rather quickly. A chronic extreme banging headache had appeared, that felt like my skull was under so much pressure that it could explode anytime. It was painful to make the simplest movements, like just turning my head a little. I assumed it was related to my sleep deprivation. My sleep abilities had rapidly declined and before I knew it, I spent approx 10 hours sleeping per week. This turned out to go on for approximately 11 months. I contributed much of my other symptoms to my insomnia as well. These symptoms included a much worsening in previously experienced anxiety. I became severely depressed, was self harming by inflicting nosebleeds and had suicidal ideation. I was severely fatigued and was picking up a new cold/flu nearly every other week and overall had a very cold body temperature. Dizziness and blurred vision were very, very common and then there was the bizarre way my concentration and memory regressed, the loss of language was part of the cognitive impairment which was terrifying.
In quick succession I had to stop my part-time work, quit college and discontinue with my driving lessons. Having to give these things up were big losses, it was terribly difficult to accept for a girl who already lacked self-esteem. Growing up, my previous competence and productivity had made up a lot for this lack of confidence in myself.
Our family had changed the previous year, before I became so unwell. My dad and mum divorced which put everyone in the family in their own place of struggle. My mum and I had started to clash during this time and while I got ill my irritability got worse and this didn’t help. I experienced a lot of pressure. The severity of my illness went far more unnoticed, I am sure, than would have been the case if the family were still one unit. We now have a good relationship, but at this time mine and my mum’s relationship got very strained and I was asked to go and live with my Dad. At this point, I left Holland and moved to England. My boyfriend whom I had met approximately a year before, gave me a reason not to give up yet.
I arrived at my boyfriends, now husbands, mothers home, in a very bad state. We naively assumed it would be a week or 3 to get back on top of things. After a few months (which were awkward for everyone) of spending most time in bed or in his bedroom trying to hang on and being as brave as I could be under the circumstances, we had to find somewhere else to live.
There were no real answers, I had been diagnosed with having depression and anxiety over the 2 years that followed, and with all the physical symptoms, I accepted that this was part of ‘suffering from anxiety and depression.’
Unfortunately at the time, my support network was not good. I had left my previous network behind in the Netherlands. Here, no one knew anything about me and functioning so badly, I was soon labelled as lazy and attention seeking. Some had thought that it would help treating me according to the ‘cruel to be kind’ theory. Strangely enough, it did not improve the situation. I felt very lonely and disliked for my illness. After all, I never had these problems with people until I became so ill, which in turn made me very, very reluctant to open up about my illness. I was very frightened and had such shame in who I had become.
Having nowhere to permanently stay, and with issues accessing benefits, I had little choice but to work so that, with both incomes, we could afford a roof above our heads. I got a cleaning job and somehow managed to drag myself off to work - taking it hour by hour. However, in general I felt more weak as time went on, I was far too ill to expect myself to work. This was self-harm of a different type, I just didn’t know how to express how bad things had become, how broken I and all my functioning was and how to stand up for and take care of myself.
Living like this will ultimately leave you taking overdoses, which would happen on a couple of occasions.
Only my headache had improved over time, and I was sleeping again, however that was largely due to the cocktail of medication I was on. There was little time for socializing or going to the doctor or anything that could have been helpful. Much of my days off were spent trying to recharge my battery to deal with the next period of working. Eventually, I had to work in my holiday days purely as rest days.I struggled with eating restrictions and bulimia on and off over the years. Otherwise, some weird unexplained symptoms were my problems with tooth infections, and new skin rashes. The sun gave me a sun rash, I was having allergic reactions to nicotine patches, and since I had a very severe allergic rash to a black henna tattoo when I was approximately 18, I was allergic to an ingredient in hair dye.
My boyfriend had some more success with his work which left us able to move from our studio apartment into a one bedroom flat. It was not the new start we hoped for, here total hell broke loose.
Quite soon after moving in, everything changed. Ok, it had hardly been going very well before, but overnight what was still recognisable as me, nearly all disappeared. I haven’t got a word to describe the pain and horror. The hell was eventually diagnosed as OCD. This overnight onset of ‘OCD’ consisted of 50 + different types of symptoms, but was mainly showing itself as repetitive behaviours, checking, getting stuck and experiencing brain fog. Much of my next 10 years would be all about ‘OCD’. I developed complex tics and sensitivities to textures, smells and sounds. My anxiety became much worse, including the social and separation anxiety. Not only did my concentration decrease, there was a type of developmental regression, I found myself carrying a cuddly toy around at this age. Very worrying to me was the cognitive impairment, I seemed to become forgetful and had problems with my working memory. My maths skills were (and still are) severely impacted.
I like to mention that when OCD exploded around me like it did, I remembered something that I had forgotten up until now. Around the age of 11, I had experienced the following; there was approximately 1 year, where one of my hands ‘felt dirty‘. I remember I did the huge majority of things with the other hand. I can't be sure which hand it was, but likely as I am right handed, I assume it was the left hand that felt dirty and unusable. I was very embarrassed as I realised it was ‘strange’. Despite noticing some clumsiness, as far as I know, no one ever picked up on it as already at such an age you unfortunately hide what you can. Interestingly, it was only the one hand which was affected, and after a year of just having this one symptom, it disappeared by itself. I never worried about it when it was gone, now with what was to come, it might not be unimportant, just as the often recurring ear infections I had when I was young.
Now, let's get back to the time in our one bedroom flat. Not only was it now totally impossible to work, I was terrified as how are you supposed to make it through the day at all? After having deteriorated to this level, I eventually took a large overdose and landed in a psychiatric hospital for 3 or 4 weeks. An interesting experience... There was little specific treatment for anything, but there was time where the pressure was taken off of me, and not having to do the daily tasks that I struggled with so badly at home did help. I happened to experience significantly less OCD out of my home environment. What was also helpful was opening up to other patients, encouraging me to also open up about part of my symptoms to my boyfriend. The bulimia was unknown to him. My shame, especially around my ‘OCD’, was immense. I realised what it looked like, or if I explained what happens in my brain, that the conclusion of me having totally lost it may not be far off, most likely. We had been existing a little past each other. I insisted that he would be out working or go out on his own to hang out with friends much of his time. This was a way of hiding the majority of my most severe ‘OCD’ symptoms.
I had a nice psychiatrist at the time who had diagnosed me with OCD. It had taken months on the waiting list and they did their best to fob me off. However, this psychiatrist was kind and cared. For example, he pointed out that yes, of course I did have some right to a benefit being as ill and disabled as I was. I was keen to read about my diagnoses, because as horrific as OCD is, I found much about it incredibly fascinating. How was it possible to have everything, including your personality, just change out of nowhere beyond what is imaginable? Unfortunately, reading is a big issue if your OCD is so severe that you have to read and re-read every word, before it clicks into your brain. Combine that with problems with your short term memory, and it does not make a book a pleasure to read. In fact, reading one of the basic books on OCD took 300 hours for me to finish.
2 years went by and if it wasn’t for a cocktail of medication that spaced me out enough to sleep, the rest of the average day was spent performing 10+ hours worth of compulsions. Out of the house I fared better on the majority of occasions, but then I could not often go out as there was only time to do the basics at home. I also spent a lot of the time needing to clean as also our flat had damp and mould issues.
Medication had helped with my sleeping, but didn’t seem to have an effect on the other symptoms, eventually it turned out it made me more exhausted and suicidal than I needed to be. This seemed to be possible to conclude years after coming off of these meds.
CBT had not helped either, despite having practised it for two years, 2 or 3 times most days, and applying exposure prevention techniques. I believed in it to begin with, but I was too committed looking back on that. Once I gave up trying its methods my OCD actually improved a little.
Had I not been able to craft myself into a less painful place, and had I not had the support of family and friends when there was time to see or speak to them, there is no way I would have made it past these years.
Often, I wasn’t able to pursue and enjoy the crafts that I did (in the evening if it was even possible). It did give me some hope and looking back, I made pretty things. My creative talent helped me feel a tiny bit less of a waste of space and capable of at least something. Also I was famously bad at just doing nothing, that was when more of the tic-compulsions would come out. The fact that things were not going well for me, became slowly more apparent to people around me, those who cared and to those who seemed to find it all ‘inconvenient’. Luckily I have had many fantastic beings in my life who didn’t see the reasons to give up on me, despite me feeling I did not have anything to offer them in return.
After a half year period of taking a break from reading and writing, I was able to pick it up again and it went a lot better than how I had become used to reading. It was essential for me to work out the demon I was fighting as much as I could.
I found out researching that my type of OCD was called TOCD (tic-related or Tourettic OCD). Partially it explained why the CBT hadn’t made things better. The therapist had difficulties believing that I did not have a substantial problem with thought-obsessions, yet so many compulsive behaviours. She made the assumption that I used to have these thought-obsessions but now my behaviour had become habits. This was not the case, my compulsions were partially sensory based. Of course, it is also not just thoughts that count as obsessions. Urges in themselves are classed as obsessions. Throughout my second year of CBT I decided to, that was if I was able to, deliberately take notes on what was not matching up with the theory. I found a lot of inconsistencies. Unfortunately my helpful psychiatrist had left and now there was a different professional sitting in front of me at every new appointment, and unfortunately they were not really getting involved. This also would have been hard for them, because things had become so complex. However, it’s sad to hear on the one hand ‘you are not ill enough to receive help’ this was when I didn’t have the OCD symptoms yet (but lists of other symptoms of course), and then be told after the OCD came along ‘your case is too complex for us to help you’.
It took approximately 2 years of me hanging on in there, to have my next permanent clinician appointed. I am sad to say, he was an extremely difficult man to work and communicate with. He lacked even a bit of compassion and struggled in other areas of his job. In the beginning, I blamed his inadequacies on myself and tried to give him opportunity after opportunity to show me anything good, but to no avail. When I spoke to family or friends about the ‘treatment’ it often was a case of if you don’t laugh, you would be crying. Unfortunately, the next 3 years went by without anything helpful on offer, other than doing the research I could do myself, and learning an awful lot that way.
Despite the difficulties, my boyfriend became my fiancée and we married approximately 2 years after our engagement. It was a truly special day and a bright point in the eventually 15 year long dark period. I never imagined, when growing up, that I would be experiencing suicidal feelings all throughout wedding planning. It seems sad for us both, however we would not know if life would improve and we could not put all on hold forever so went ahead with what we could.
After the years of hanging in there, I eventually met my new psychologist. A breath of fresh air. I remember nervously saying to her; ‘Well CBT hasn’t worked for me, I assume you will be angry…,’ or something along those lines. This had been the normal reaction from professionals via the NHS services so far. But she was totally different, I didn’t need to fit in the box like with the others. I felt accepted for being me, regardless of how I was doing and she never made me feel like I was a burden when we just communicated about how truly painful the situation was. Such empathy that I had only before experienced with friends and family. My insights mattered and under her help my self-esteem grew.
I realise describing the 15 years of living with severe ‘OCD’ coming out in 50+ different types of compulsive behaviours …( And I mean types as in ‘I would group them in types’, if not we would be talking about hundreds of separate ‘compulsions’ otherwise…). is not in detail describing much of the problems I faced.
The first problem in describing such a thing is that I haven’t got the vocabulary for the whole experience. I simply don’t know what words can describe it?
It is also very hard to pick what specifically to describe, after all, the list is so very long.
So what does it actually look like to have such symptoms as the following?
Contamination difficulties: touching, hand washing, using anti bacterial gel and wipes, bathing 2 to 4 hours a time, restricted breathing.
(contamination, although mould has been a particular issue for me, as it seems to have exacerbated my symptoms, I would not want to give the impression that I have been consumed with contamination fears and scary dirt. Especially not for the first few years of my illness, it had been more a wrong feeling than ‘thought’ )
Then there are the checking difficulties; Potentially any item is checkable, so is every scenario, with the state of an item, including it’s position, also all being checkable…. Then you have words, numbers, making piles of items….. All of which can be checked.
Well, to express this in what it actually means during a task, I will take you through two examples, now in detail, hopefully describing this.
The task of writing a short email: What’s the worst that can happen I hear you ask?
Where, if reading and writing was possible at all, it went as follows. I would have to reread every word typed in the email around 10 to 80 times… although this following has never been about a sudden worsening of dyslexia like suggested by a professional. I would read words like this : reh-ee-ah-d wu-or-dsss lll-ii-kke t-huh-iii-sssh. (And then however many times necessary).
Once you have learned to read and write, you think it is normal to use words and letters from there on. It is these basis abilities that are so painful to lose in such confusing circumstances. Much disruptive and distressing enough as that was to experience, my OCD had extra ideas. I kept finding myself ‘wiping’ around me and around the computer. This ‘contamination issue’ (which doesn’t describe it well as we will later learn because it could be substituted by checking behaviours) showed when touching ‘something’ and then I would feel the need to make a wiping action over the area straight after. I would hover the palm of my hand above the mouse and touch it in the slightest way possible to do the task. With the keyboard, I would also try to make the least amount of contact with my skin possible. I would often use one finger to type up a whole email. I would need to precisely press the middle of a key because of ‘the feel’ of it. When I feel the edge of a key, it would unsettle me, this confusion would come over me ‘what just happened?’ and the urge would get me to wipe over the area that had just been touched. Because of how easy it is to make a ‘wrong touch’ so to speak, I would wipe the keyboard during pretty much every sentence. In that process typing up lots of random letters of course where they don’t belong in the email. They then need to be deleted, often leaving me to delete too many when I wipe the delete key.
During the email I would also wipe when my hands, arms or legs touched the desk. This ‘touch then wipe compulsion’ I felt could be one beneficial area to resist at the time in therapy. Of course what happened at that point was I was trying so hard to focus on not wiping and as on edge as I was, other more distressing compulsions took over. Scrolling up and down pages, 20 + times, checking whether when things were out of sight, the information wouldn’t be lost. I was then compelled to avoid going over any button on the screen. Any clickable button that would take you to, say another page or would open a file, I would need to avoid as just going over them with the mouse would make me feel that I have ‘changed things’ within those files, even when at this stage I haven’t gone into the file but just over the button. When I had to go to click on something, I would need to open and close things and redo this many, many times. Also, the email process would have started with logging in and out 20 x just to check stuff hadn’t ‘gone wrong somehow’ and if saving the message was necessary, I would have to do it 10+ times straight after each other. All this added stuff did not make me calmer, the state of panic was immense. The worst part started when also my breathing got into difficulty. Around the desk there had been a few chest of drawers…(if I needed something out of a draw, I often wouldn‘t close it for a week or two, because say if I close 4 drawers, it could take me 3 hours of repetitively opening and closing them alone. This way you find a lot of open drawers in a house….) Like with other ‘open’ things, I found myself not able to breathe into that direction. So after a while, I was mainly breathing out upwards. Sometimes with a scarf on me, if my breath was going into ‘non-acceptable’ areas, I would be compelled to waft air around with the scarf. And I would also have periods of holding in my breath far too long, needless to say this was very disturbing… On top, my attempts of doing less wiping had failed. Because I was so frightened, extra symptoms had developed - confirming that I was losing my mind. In the end, I resorted to taping my fingers with cello tape, using plastic gloves, and still then, I could only type using one finger.
For a second example of the hell that is this illness, I like to talk you through the difficulties of making a cup of tea. At the time, it was often a two hour process. It would start with getting a cup involving opening and closing the cupboard repetitively. That is after having touched the handle with clean hands or gloves on. With cup in hand, that is if hand as a concept has registered of course (just like every single item in this process has the opportunity to not register, especially as the course of my illness progressed over the years).
Now, standing here with the cup, I close the cupboard and open and close it as many times as it takes, feeling like it is plausible that while the cupboard is closed the cups might have gotten mixed up, in the same way as clothes magically fall through the bottoms of drawers onto the floor.
Next, I feel the need to touch the tap to fill up the kettle, while making the least contact possible. The kettle needed to be turned on, which takes multiple checks. Then I get the milk out, I need to check that everything in the fridge is in the correct place even though I really dread the process. When I hold the milk… milk? Miiilkkkku? I have to close the fridge. Open-seeing-closed, open-seeing-closed or feel the need to count during the experience. I can’t slam the door too hard or do it not hard enough, it needs to feel ‘just so’. Then, the kettle switch needs pressing down, possibly repetitively. By the time it has popped up and the water has boiled, I need to check if the kettle is off and that the light is not glowing anymore. I have to go through the fridge process a second time, putting back the milk. I will try to hurry as the moisture in the air from the kettle is making me uncomfortable. By the time I have a tea to drink, it often is luc-warm, I drink it in one, for years I have been dehydrated so I just need the liquid, also I like to get the distressing process of having a tea to be completed ASAP. I am painfully aware that now I have created a cup for the washing up, which will likely take me 10 anxious and confused minutes to wash up, this one cup.
Over the years I have had to go through long periods of not being able to do things like cook, wash up, read, dust and even eat enough. This condition robs you of the most basic abilities. Sometimes I am grateful that my memory and concentration seems to be affected as it helps me not to dwell on all the pain that has been. The slowness and the unproductivity might be imaginable, maybe also a part of the exhaustion of living like it, although my chronic fatigue also seems to be a symptom in itself. The resulting neglect of the house and other responsibilities, yourself and others is also imaginable I think? But I think unless you have experienced it yourself or someone very close to you has, you can’t imagine the frantic attempts to be freed from the torture of this illness.
Over the years, professionals have sadly suggested that my checking behaviours must be helpful to my ability to do a task well, or made suggestions that my behaviours were the result of boredom.
For me, the most traumatic experience of everything has been the non-registering, the problems processing, when in confusing ‘stuckness’. You can’t rely on your body, eyes, your intelligence; the brain has somehow stopped recognizing things like it did before. I have spent a ridiculously long amount of hours, sometimes more than 6 hours of the day, just standing around looking nearly frozen, staring or instead with eyes closed (or swapping between those two) and hands over my ears trying to focus. Repeating the same words out loud or to myself, over and over just trying to achieve the knowing of ‘things’, while in such a distressed state that makes no logical sense whatsoever. Out amongst all the ‘choices’ I didn’t have left, I would feel so much distress leading me to hit myself or bang my head against doors.
Eventually I started to take Clomipramine, a tricyclic antidepressant, having never had any luck with the SSRI’s. Things did improve, my suicidal feelings very quickly disappeared and have not returned since, even when, until the medication change it had been a total constant feeling. The Clomipramine also took the edge off of the worst of my OCD. I took part over the years in various research programs for OCD. The latest one I signed up for in particular restored a lot of faith, that yes, with someone who is interested in front of me I can communicate. I also became aware of how much I had learned through these terrible years. During the year on Clomipramine and Aripiprazole, I felt my ‘OCD’ had reduced by 30 to 40%, but it was still moderate to severe. Up to now I had looked primarily into OCD, but it was approximately a year ago I mentioned the word PANDAS to my psychologist. The more information I accessed, the more it sounded just like what I had been experiencing.
Life was improving, I could be more productive in my research. I could do more things I enjoyed like hanging out with friends and making creative things.
The noise from loved ones about PANDAS/ PANS was, yes you match a lot of the symptoms of these conditions. I assumed I would have more of a chance with PANS as I did not remember having a painful throat during even part of the years spent suffering.
With the help of my family we got me to do the Cunningham Panel of tests. These blood test results came back positive. It was such a relief. Now I have made diet improvements as I have learned about the inflammation caused by certain foods. We are saving up so that I can meet a PANDAS/PANS doctor and hopefully get the official diagnosis and see if there are still options left treatment wise, that we can also afford in the future.
This illness is so cruel, unfortunately so is the added suffering of having to fight for the right diagnosis in a system too often not able to or wanting to help. This last year I have felt understood like never before. Everyone’s story will have variations in symptoms and other experiences, but I feel I have found somewhere I belong. I hope to be a force in awareness raising for this group of extraordinary people. What a relief it is to after years of hiding as much as I possibly could to be able to be so open with so little amount of shame. My brother has told me all along that I had nothing to be ashamed of, but I didn’t believe him. I now understand that the resilience and bravery of patients with PANDAS, PANS and related conditions should if anything be something to be extremely proud of.
Of course I am majorly grateful to my husband who walked alongside me for all those terrible years.
By Samara Tweed
Photo From Samara:
[Image Description: A balloon modeled panda with a bush with flowers on in the background. The panda has long un-inflated green balloons sticking out of the mouth like food and if holding balloon modeled bamboo]