Tag Archives: pineal gland

Interview with a Shaman

The Following is an interview which was kindly agreed to with Don Lucio, the Ayahuasca Shaman at Selva Madre Retreat Centre, Iquitos, Peru, in May 2017. Translation thanks to Ronald Rincopa.

In this interview, I asked Don Lucio to tell me a little bit about himself, his family and how he came to set up Selva Madre. I asked him to discuss his childhood, his beliefs, how he became a Shaman including his own personal experiences of Ayahuasca and the tools he uses as a Shaman. I asked him how to do we know a good retreat centre from a bad one, what we should be looking for when it comes to the ingredients of the Ayahuasca Brew itself, how many ceremonies should we be taking… and finally any advice he has for anybody taking the Ayahuasca Journey!


About Don Lucio, his Family & home;

When you first meet Don Lucio you will notice an air of calm and serenity around him. His hypnotic tones of slow rolling Latino Spanish, mixed with apologetic smiles over broken English, will captivate you and will sooth you into a smiling attentive slumber. You will always see Don Lucio wearing ironic comical t-shirts as well as a Cheshire smile across his face like a Peruvian Buddha who knows something you don’t! It is clear a happy lifestyle keeps you young, as he has a very youthful appearance at 55 years of age.

Don Lucio, also known as Don Luis, set up and established the Ayahuasca retreat centre ‘Selva Madre’, in Padre Coche, outside Iquitos, in Peru. Here lies a sleepy island village only reachable by boat, where he lives only a short motor taxi or 20minute walk away on an expansive grassy site surrounded by low rolling jungle with his family, consisting of his wife, 1 son and 2 daughters. All of whom are married and live together on site in Selva Madre.

Each of his family members play an important role in the everyday running of the centre, from washing and cleaning and crafts making, to being part of the ceremonies themselves.

The site includes their own family accommodation. This comprises of a small two story wooden house of basic means which include sleeping quarters and which is attached to another larger ground floor wooden communal room where they gather for meals. The old retreat centre was based only up from the family home, near the river, but recently this has been dismantled and returned to nature, and across in another field is the newly built retreat centre and temple.

Like his father, who married a woman from the Shipibo Tribe, Don Lucio married a woman from another tribe called the Cocama Tribe, who were very well known for their artistry and craft in pottery as well as making excellent fighters.

Don Lucio was born into the Agwaruna Tribe, the same tribe as his father. The Agwaruna Tribe, one of the many tribes of the Amazon, were well known for their bravery in battle on rough terrain due to their location and for their use of Ayahuasca.

He has 2 Brothers and 1 Sister and all his brothers are Ayahuasca Shamans. Each of them trained by Don Lucio himself. He is currently training his son, Luis Junior, to be an Ayahuasca Shaman as well as his Son in Law Anderson, both who take part in the ceremonies there.

It was Don Lucio’s Grandfather who trained him to be an Ayahuasca Shaman. He was a huge influence in his life and a huge part of Don Lucio’s childhood life was spent training with his grandfather.  He trained for 12 years until 16 years, and unfortunately then his grandfather died so he had to continue to train himself.

When asked about his childhood and training to be a Shaman he says;

‘You need the company of a master to guide and protect you for 8 years as we are in a big world and we don’t know or understand, we can make mistakes and this is the reason that you need a master to teach you the discipline. The main strong discipline is not to get annoyed and avoid frustration’.

After his grandfather died he sought to continue his training with friends of his grandfather who were also Ayahuasca Shamans. However, Don Lucio still had to do many ceremonies with some other masters to practise shamanism, and to learn about the experience in this way of life to deepen his knowledge and understanding.


Work experience & Development of Selva Madre;

Later in life, when a little older and a more experienced Ayahuasca Shaman, he was asked to work for different local retreat centres, as a Shaman. Although he gained great understanding in the running of an Ayahuasca Centre, carrying out ceremonies with foreign visitors, from his experience in these places he felt that very often the traditional methods of Ayahuasca use and brewing were not always adhered to, which caused him to question how he felt these retreat centres should be ran, and with that he set up his own retreat centre, Selva Madra.

While working at other retreat centres he tells me that he ‘…would be told to ‘add in’ other plant medicines to the Ayahuasca brew’, so that the recipients would get the ‘fanfare’ of visuals they came to Peru expecting from the medicine. As you will see from my previous post, when using the traditional methods of Ayahuasca not everyone has the same effect, and quite often some people have no obvious effect from the medicine at all.

Don Lucio says ‘…just because there is no obvious effect, does not mean that the medicine is not working on a different level’. Because the Western world come to Peru expecting to have profound visual effects, and due to lack of information on the reality of what to expect from a ceremony, Don Lucio feels that this scenario is very prevalent. He tells me it makes him sad that this is what many retreat centres do. He says he understands the subtleties of the medicine and knows that it’s still working even when there are ‘no obvious effects felt’ and he feels it is important to not ‘mess around’ with the sacred brew but to educate people on what to really expect from taking Ayahuasca, including how it is always working even when you think it is not.

With this in mind, he was not happy to comply with the requests of these retreat centres to ‘falsify the outcomes of people’s experiences’ and so he decided to go out on his own and set up his own retreat centre where he could honour the traditional methods, hoping he could pass this on to others and teach them the importance of using only the traditional brew.

I asked Don Lucio to tell me a little about his Education and Religion as well as his First Ayahuasca experience, how he felt the first time he took the medicine, and how his family felt with him becoming a Shaman, a very devoted path of life to undertake;

I guess when I think of indigenous tribes I imagine quite a basic and jungle like upbringing, which is ignorance on my part. However, it surprised me to learn that Don Lucio had a formal education in Primary, and also in Secondary school. He said he was very studious, and liked school a lot. With this I was also curious to know what his religious upbringing was, as in Peru there is quite a strong Christian presence there, especially due to the arrival of the missionaries as early as the late 1500’s, so you will see many churches and missionary signs there.

When he was a child he tells me, his religion was formally ‘Tupac’, former God of his ancestors. Also, the Gods of the Sun, Earth, Fire, and ground as well as being Catholic. However, now he is mostly Catholic and part of the Christian church (Santa Rita de Casa) while also maintaining his traditional connections with Pachamama, and the spirit of nature… I felt this was quite interesting that he could be a follower of the Catholic religion whilst maintaining the old traditional connections and beliefs in the spirits of nature… and his answer was God is everything!

With regards to his first Ayahuasca experience he tells me the first time he took Ayahuasca was when he ‘was 8 years old, and it was just a little bit’.  He said of his experience ‘The First time there was nothing beautiful! It was very strong, very scary and sometimes I didn’t want to continue’. Later after more experience in the ceremonies he says ‘I almost leave so I didn’t have to do ayahuasca anymore. I didn’t want to purge anymore. The diahorrea, the diet with no salt, no sugar, no sex, was very complicated and difficult until one moment I let control of this in my life.’

He continues to say that ‘Even when we think we have the answer we need to see the answer’. He tells me that one day when he finally surrendered to everything he felt he understood that ‘nature was the answer to everything that exists and that God was closer to him’. He opened his eyes, and suddenly he didn’t feel as heavy any more, it changed his life, and he tells me that so far, he is still changing!

He tells me that it was many years before he enjoyed Ayahuasca. It took him about 8 years before he enjoyed it and still to this day he does not like the flavour! It’s nice to know that even an Ayahuasca Shaman is human with regards to the unique taste of the medicine!

He continues ‘There are times I do not look forward to taking Ayahuasca. Every life is the same and the Shaman is a way or a path of dedication like what we choose to have with a family or a home, like start of a relationship. It’s the same feeling like a discipline is driving you. To find more things’.

He tells me ‘I remember that I wanted to stop taking ayahuasca forever… I left for one year and stopped. I tried to leave forever because I only to want to have an ordinary life. Always with discipline, always busy, I didn’t have time to do other things. Then suddenly one time something made me stay! I didn’t know what I wanted’ to be a Shaman or to have ordinary life ‘but after I realised that this is part of the life I need to live to get maturity, once I start to understand that I need life direction, so then I understand shamanism is a direction, a path to spirituality, so that’s why I came back again’.

In that year when he stopped he tells me ‘it was like my life was lost, in the freedom was good alcohol, dance, sex, eat salt or sugar or meat, do things I liked, but nothing of that helped my direction’, so essentially, he got it out of his system in the year he took a break and has never looked back since. Sometimes we need to go the wrong road to know what the right road is.

Becoming a Shaman seems to be such a devoted way of life so I was curious to know how did people react when he became a Shaman.  

He says ‘They used to have a little bit of fear because some shaman died from helping other people. One of the ceremonies where there is other power, it can crush and kill the shaman. But now they see how I am and they are no longer afraid for me!’

I was curious to know how he feels now about drinking Ayahuasca and it effects, and so he continues to tell me that ‘Every ceremony is different and never repeats. Every ceremony has a different message, frequency, many time our brain is too big this connection and our brain cannot control this.’

He tells me that now his ‘Dose size is very little, just to get into trance and get a connection’. That helps him to understand and have perception with all the people who are around him. He can also use Icaros to connect, and says that he too needs some direction and so the Icaros guide him like they do others.

I ask Don Lucio what are the characteristics that make a good shaman?

He tells me ‘To have a good spirit, to be happy, to have willpower, and to have a spiritual life. Shamanism is a mystery like a priest or minister it’s a vocation and a lot of this needs discipline. The name of all of this is discipline, no meat, no get upset much, don’t be greedy!’ this we both laughed at as we know how easily said this is and how difficult it can be; however, he maintains that even he gets frustrated and annoyed, but it’s the intention to return to a peaceful state that’s important.


When initially researching retreat centres for Ayahuasca, the one thing I noticed was that it seems to be a slightly saturated market in Iquitos more especially. With this in mind it can be difficult to know what makes for a good retreat centre and how do you really know a good shaman from a bad shaman for those coming from other countries– what do we look for:


Don Lucio says ‘This is very important question! Normally the shaman doesn’t have any title or diplomas, or education. It has to transcending from a tribe or from their culture. His picture should show whether he is native. If he is from a native tribe then he came from a different generation. If he is not a native person, you need to know who is the native that trained him because each shaman has a transcending experience and he will be very well known. The local people will speak good about him and they will have a good reputation’.

He continues ‘If you are going to use a non-native shaman you need to see who has trained him. You will see that he has a good master which has trained him, then he should be a good shaman! It is important to ask!’. He tells me that ‘Many people think because they drink more than 20 times they can make a good shaman, but they have no shaman themselves and are not trained, and so they are not a good shaman!’. He also mentions that the ‘Icaros is passed on from person to person and you need guidance, this person if they had no master and no tribe, it means they are teaching their own ideology and using their own ego.  Just because they drink 10 times doesn’t mean that they are safe to guide you’.

I explained that from my own research, some people seem to have the face of a local on their website, however from accounts I have read it seems that sometimes when they arrive to the retreat centre there are no locals there. So, I asked him how do you know who is a real shaman and who is not?

He comments on this by saying ‘Yes, some people put some local persons face online and they may not be a shaman. It’s important this question, because there are many people that try to do for only money. Any people can do only for money.’

‘There are local persons who have only a little bit of money who will do a photo online for the centre or retreat and local people who don’t know who any better and who is this person, they put local people online to say they are a local healer but when you get to the retreat that person is not there! This kind of people are just to do money, because shamanism is not a machine to do money. It is to give all that we can give, your time, power, love, respect, all that you have, to share with the people and to continue to do more things, to grow and love and it is a project for humanity. Like education to continue generation to generation – this is the real shaman, they are not greedy it is just a service. One must ask before if this local face will be at the retreat centre, and who will carry out the ceremony’.

While researching the various Ayahuasca Centres and about the brew itself (Check out my previous post here) I discovered that there seemed to be some variations to how the brew was made, and as Don Lucio mentioned at the beginning of this interview he had been asked to amend the traditional brew, so I asked him, in his opinion, what we should look out for when taking the brew?

‘Ayahuasca is Ayahuasca and Chacruna. This is important. Ayahuasca could be made or prepared in different ways. I realise people who do business they just take care of themselves so they let that people can relax and do other medicine, it will be just a drug, but the ayahuasca we can only mix with Chacruna. There are many mix, Wambisa is another mix but this brings blurred eyes like intoxication a rush in your body, but is very very strong, so some people prefer to use Wambisa to sell somebody who wants to have the effect of being high. There is another called Toi, which harmful to eyes and provides lots of opticals. We saw many people who use Toi and they don’t see anymore! But Chacruna don’t produce that, it just helps you to open your neuro-transmition, our visionary system, like we have our pineal gland to open this properly.

The Chacruna and Ayahuasca is two powers. The Chacruna opens and Ayahuasca sends throughout the cells to have the connection. Aya, some people get cold because the blood is running through our brain and some people feel hot that reaction causes the Aya to go to every part of the body. Chacruna opens and Aya connects.


For the Shaman, the Ayahuasca Ceremony is about much more than consuming the brew and on their table, you will see many tools which they use in each ceremony. Here I have asked him to explain these;

‘Tobacco is used to protect the shaman so he doesn’t receive the vibration of the patient who is working with’.

‘Timolina helps to control the breathing’.

‘Flowering water helps to connect’.

‘Cologne has an aromatic that allows connection to a lower frequency, to help keep calm and stable’.

‘Camalonga – this is powerful protection for the shaman and he uses that when somebody has pain’

‘Shakapa is the rhythm tool for the Icaros, it is made from leaves of the jungle bundles together and when it is shaken like a tambourine, it helps the connection for the frequency of the sounds, it’s an instrument for connection to sound’.

‘The Icaros are a song and whistling melody used through the ceremony. The reason for the whistling and singing Icaros is to help open the door to the spirit world’. He explains that ‘sometimes we have a call or sound that we use to bring a pet, so the Icaros allows us to call energies. It’s a language to connect to the spirit. It’s not a language but it’s a connection of a vibration. We all have different vibrations on where we want to go, past life etc. For example, I can do an Icaros to visit my grandfather from many years ago. I can call on Icaros to go back to many many generations ago, by using Icaros to go back to when life was beginning. It helps to open the door and come back again’. Each family/ tribe has their own Icaros. Each have different sounds.

‘Clothing and Robes are significant to our ancestors, so we can be like our ancestor. Shamans used to wear long dress and hats because they were masters, doctors from the village. It is the symbol of the colours of nature and respect’.

Having my own virtual baggage and life stories which I felt needed to be addressed with doing an Ayahuasca Retreat, the one thing I found difficult to perceive before heading off on my trip was how many ceremonies did I need to book in for. I was trying to budget, and figure out return flights, and timescales… and I just felt confused not knowing how much time and money I needed to take into account for…… I was curious to know how many ceremonies they felt were needed for serious vs not serious problems?

His answer was concise ‘The shaman is like a doctor who needs to see you and how your body is to make a diagnostic, how your body is. Don’t tell information but the Shaman know your life because his mind is open and he can perceive more beyond your life and the moment. He can advise you on the length of time needed only during when you meet. Then you will know if you need more ceremonies to heal different things. It depends on how the person sees. Also there is people who don’t need more than 4. Its individual.’

Having since been to a good number of ceremonies I could see clearly that there were many people there to heal from an array of life caused dis-ease. Some seemed to have received all they came for after one ceremony, and others like myself, needed several ceremonies… not entirely sure we finished all that we came to achieve but certainly not leaving empty handed having certainly made some progress. Therefore, the number of ceremonies is certainly individual however I would highly recommend some moreover than none.


Finally, I felt it was important to ask Don Lucio if there was anything that he felt he wanted the world to know… whether about the misconceptions about Ayahuasca general life advice;

‘Yes, with Ayahuasca its complicated about the information available, the internet says many things and lots of wrong information make people afraid. Also, these bad people who look only to make money give bad experience to some people and this is not how Ayahuasca is. Because one thing is the experience and the other thing is the information people read from the internet. Many time with the words you cannot get an understanding. Ayahuasca is healing experience and because with just words this is not how people understand so we can just recommend it like a medicine from a doctor. The patient has to take it or not take it. Through recommendation only.’

In regards to finding a life path or happiness he adds that ‘Shamanism or devoted life is also important for people in today’s fast life. Life is busy and frustrated and angry. We must connect with nature and take time to devote our life with intention. As it helps is to find direction in our life. Then come the faith, the love, the happiness and understanding in our life that come from serenity so it gives you calm and peace, that’s the way how we can get more easy the happiness…. And don’t get frustrated!’ He Laughs!

Then repeats….. and ‘Don’t get frustrated!’



Written by Deborah Kelly – Little Boho Hobo, 2017





‘Penelope’ The Pineal Cyst…


So… where do I start?

I have been attempting to write this particular blog for little while and yet, I have also been avoiding it like the plague for a few reasons…

This blog started out as a way to share my experiences with others, in hopes that the information I impart will help another in their own quest for information and in hopes that we can all share our knowledge and information together…learning as we go. However, this blog entry has been testing me somewhat…in that I have wanted to share my new saga… but am kind of reluctant also because I do not yet have an answer for what is happening…and so I am in the middle of limbo somewhere…. and in a frustrated kind of hazy limbo… but I guess this is what this blog is about isn’t it?

So, as you will read from my other blogs… I have had a pretty interesting year of chaos with more twists and turns than an Irish Bog road (for those of you who have just joined check out my about page for some more info). To spice things up for good measure I recently had started to notice an increase in some issues I was having with my vision, memory, motion and headaches.


My vision had been, on and off, blurry with lots of floaters and blackout spots fading in and out of my vision throughout the year (more especially as I stood up – which I assumed was blood pressure). I was having lots of floaters in my sight (which essentially look to me like toothpaste spatters in my line of vision -yes folks… we all have a mirror with toothpaste spatters!). But these started off as irritation early in the year and progressively started to get worse, and worse, more persistently and rapidly in the more recent months.

Floaters, Black Speckles and Blurred Vision like sleep in your eye or toothpaste on your mirror!

I also started to feel as though I had bright spots shining in the back of my eye (like there was a bright light shining in from somewhere). It was extremely irritating as I couldn’t seem to find where this light was coming from, and sometimes felt like it was light reflecting from somewhere onto my nose and so I would often cover my hand over my nose to try stop the reflection – which never seemed to work for me, but couldn’t figure out where this bloody light was coming from – so assumed my nose was attracting unwanted light attention!!


Constant feeling like I have lights shining in the back of my eyes somewhere!

To add to this, I also see star shaped halos around lights (no apparitions of Christ have so far accompanied this!!) this being during the day, duck time and night time, on things like tail lights on cars, bulbs, streetlamps and traffic lights etc. And of course have been getting banging headaches on and off over time. These are pretty bad when I get them but are not always present, kind of like a stabbing pain in the back of my head or behind my eyes.


These things were all happening intermittently and independently enough from each other at the start, so I never really connected them all until they were all starting to happen together over the past few months.

One really annoying thing in all this has been, that over the past year or so I had also noticed that when I would read it would take me a lot longer to get through the pages. My attention was less and words seemed harder to read like they were harder to focus on, I would see each word individually at a time instead of as a flow of words (this has become more defined over the past few months).

I felt that reading was becoming a total chore both for leisure and in work too! I would tire easily from it and would find myself reading the same line over and over and over again about 6-8 times before I had realised I wasn’t taking it in, at all. The same with full paragraphs and pages. I had not taken any of a whole bunch of sentences in. I know we all do this from time to time, but this was far more noticeable than ever before!

I love reading and used to do alot years ago. I read alot of crime novels and fiction. However, more recently my reading had turned to text books and more learning articles and deeper more life based books, so I felt that maybe these took more brain power to read and so I had even started to think…. that maybe I was not intelligent enough to read these books, or maybe not brainy enough to read a lot… as I would tire and take incredible effort to hold information in – I genuinely started to feel like maybe my IQ was not enough to read and retain information or had dropped …. which is a truly awful feeling to have!! It’s awful to feel like you are less smart than others who can clearly read and retain information no problem!!

I believe that you can train yourself to do something if you really want it bad enough, and over the years I have felt that if I persist to read, and read, and read, as much as possible then I will beat my brain into submission of being able to read like I used to…. which hasn’t worked. In honesty, it would be great to know that there was a little more at play in my ability to read and retain information than my stupidity!!



I noticed these issues with my sight had intensified and had become more persistent over the past year, but had attributed it to stress from my Dad dying .. even though I felt I had handled all of this in my stride (either that or I have been in complete denial over the past year or more and it will bite me in the ass very very soon!).

I went to see an optician to see (pardon the pun) if I needed glasses. Nope… ‘eyesight perfect and just dry eyes’, they said.

After Christmas just gone, and a very stressful 2months breaking up with my Fiance and in turn cancelling a wedding, the symptoms seemed to go a bit crazy and get worse by the month… and then suddenly by the week… and more scarily by the day… in that symptoms that were there 10 – 30% of the time had multiplied and were now persistently there 70-80% of the time in the space of 2-3 months…!!

This was starting to affect my work and so I panicked and decided to go to the Doc who arranged for me to see (again… pardon the pun!) an Opthalmist, who in turn said she couldn’t see any real issues except for severe dry eyes and minimal torturous vessels in my eyes, along with a PVD (Post Vitreous Detachment) none of which she was particularly concerned about but she wanted to send me for a visual fields test (which I aced) and a Electroretinography exam – say that 10 times fast while having a mouthful of crackers!! (This is where they attach elcotrobes to your eyeball and measure the impulse from my eye to my brain)(which I have yet to do).

While waiting for an update or appointment (which in Ireland can be a long painful process!), my symptoms had remained persistent, however my memory and ability to problem solve and work with logic seemed to cascade downhill. Whether this was just additional stress of it all creating a knock-on effect I don’t know but I decided not to wait and find out… especially with my heading off traveling in May…and so I asked the Doc to write me a referral for an MRI Scan to be done.

The MRI was carried out at 9.30am on a Monday morning on 6th March, just gone. I was told I would hear from my Doc in  2-3 days. So, you can imagine my surprise to hear (so efficiently) from my Doc when she rang me at 6.30pm that evening to ask (while I was naked in a changing room in a ‘NEXT’ Shop) 1. whether I was at home and 2. was I with a family member??

Now….. These two questions, when asked together in the same sentence, are never going to end with ‘I would like to offer you a lifetime supply of Haribo Jellies!’…. and so you can guess no good can come of them…


As soon as she asked, I had flashbacks of my poor Mum (who in the past had to ask the same questions before….) which in turn led to her telling me, on 3 separate occasions, bad news … twice that the family dogs had died and then that my Dad was seriously ill ….. see… no good can come of these two sentences together!!

Therefore, I knew I couldn’t answer with

‘Actually, No… I’m naked in a changing room in a shop in Dublin, and I am happy to wait in suspense to know why you are calling me so soon after my MRI this morning. Maybe you could wait until I get dressed, pay for my parking, go home to my house where I no longer live with my Fiance and therefore have nobody by my side and you could tell me the bad news then!!!’ 🙂

So, I went with white lies instead …

‘Yes, I’m at home. Go ahead!’. She then told me that I have a 12mm Pineal Cyst in my Brain which she felt was a reasonable size and that I could arrange to go see a Neuro specialist if I liked.

Now, I knew where the Pineal Gland was funnily enough however I asked her for confirmation and she replied with ‘Oh, I don’t know… I’m a GP!’…. So I thought….Okay then! Moving swiftly along!


So, like most impatient human beings I did a lot of googling and research in medical journals myself to find out as much as I could about them before I finally got to see a Neuro.


My own findings say that:

Most people who have Pineal Cysts don’t even know they ever have them. They usually show up incidentally on <1-4% of MRI scans when people are getting scans for other things.

Most Pineal Cysts are <.5mm and are benign and asymptomatic (don’t cause symptoms). Rare or less common cysts are usually between 10-14mm in size. These can get bigger during puberty and shrink over time, and my be linked to hormone changes during puberty. However, the size of the Cyst does not always indicate whether it could pose a problem or not. It is most likely that he larger the cyst the more likely the mass is to press on surrounding areas and so cause symptoms, however very small cysts cannot be excluded from being problematic.

From what I understand, most Neuros will not want to touch them with a bargepole because of where they are located in the brain (on the Pinneal Gland, which is less than 8mm big itself, and situated at the centre of the brain at the top of the Brain Stem).

The Pineal Gland is responsible for the production of Melatonin (a derivative of Seratonin) which is responsible for sleep. Due to its’ location in the brain (close to optical and motor areas of brain, and at the brain stem where the cerebral spinal fluid passes through), and not always due to the size, the mass can sometimes cause problems such as visual disturbances, double vision, vision paralyses, memory loss, motor issues, hydrocephalus, nausea, headaches etc.

However, the general consensus seems to be, while looking at other peoples opinions online (and being open to the fact that most people only talk about the negative stuff and not as often about the positive stuff, and also taking into account mass hysteria) and reading alot of medical journals and watching some online medical conferences/ talks, there does not seem to be alot of information about these cysts. It feels to me that 1. Surgeons don’t want to go near them unless they have to (for obvious reasons)! and 2. Alot of people seem to go around with almost identical or extremely similar symptoms to each other, while all seeminng to have these Pineal Cysts, but these Surgeons seem to have an issue with believing these masses of people in their symptoms and give the same text book answer all the time – That they are usually not symptomatic, they try to blame visual symptoms on too much computer time, or other symptoms on stress and so pass them off until the patient persists in doing something more about them. There seem to be two surgeons in the world that specialise in this, one is in Texas and one in Sydney. Outside of that it seems to be difficult to find a surgeon who will either listen to their patient and take them seriously about their symptoms or who knows much about them!

Meet Penelope – My Pineal Gland Cyst!

So, because I had requested the MRI myself, and it was not by a specialist, I then needed to source a neuro myself, who would see me and speak with me about my MRI. This proved ridiculously difficult and I was passed from Billy to Jack. I was referred to Blackrock Clinic to a man who would not see me and forward my details on to another surgeon in Beaumont Hospital, who would never answer their phones, or whose phones would only ever go to voicemails, or who would sometimes ring out and sometimes connect only to tell you that they were busy carrying out administration!! I was short of landing on their A&E doorstep to be seen!! I decided to contact my old Doctor, who is retired but has many connections, to see what he could do and sure enough he managed to get me an appointment with a Neuro in The Hermitage (He did this by contacting the Dept of Health to complain that the hospital was not answering their phones!!!!).

I met with the Neuro and advised my Mum, who came with me, of what I expected him to say. I expected all the text book answers above, and sure enough I was kicking her under the table as he mentioned each of them… one by one!


He asked me for my symptoms,  and two sentences in he had stopped listening to me. He said that it had probably been there all my life and asked if I worked on Computers (who doesn’t now a days), and asked if I was stressed (who isn’t now a days!)….all rambling off these sentences without too much interest in the answers.

He waved a hand at me while I was only starting to talk and he said ‘These cysts are ‘generally’ nothing… so I asked him whether his opinion was based on his own professional experience of Pineal Cysts…. or whether that was based on the entire history of Pineal Cysts in the world?'(just to gently remind him that he wasn’t God!).

We asked, ‘if the cyst was nothing, what was the cause of all my symptoms?’ He looked blank and vacant and turned to the only topic he seemed to know about which was ‘Headaches’, for which he said I should take headache tablets (considering my headaches were not the main symptom discussed with him here, and proving how he did not listen at all to anything I had said, he hung on the headaches and ignored all other symptoms)

He had no answer for what I could do with any other symptoms such as my visual disturbances and memory function! We asked him again what I was supposed to do now. He looked at a dead end, and so suggested that we do a Contrast MRI (by means of covering his own arse and appearing to do something helpful) but suggested that he will be phoning me with the same response as now, that this is not the cause of my symptoms.


Needless to say, I was pretty pissed off!! If he had given me the same answer, but had actually listened to me and about what my symptoms were to ensure he knew the full history, or if he seemed to know anything more than how to take headache tablets then I would be satisfied, baring in mind he had no case history or file sent to him in advance except the disc and info I brought on the day, but it was his cocky pre-rehearsed text book answer that irked me! So, he got his €200 for 5 mins work…. a prostitute would have been proud of him!

I managed to find another referral for a second Neuro, who we are looking to get a second opion from, and I am due to meet 5 days before I travel to Peru, so we will just have to wait and see what comes of this.

In the midst of all this chaos, my Mum discovered a FAB physio in Sandycove, Dublin, who specialises in Vestibular issues. Mam was attending her for Vertigo, and had been miraculously cured in seconds!! So I decided to take a trip to her a few months back to see if she could help with my motion and visual issues while waiting on Medical Appointments (it’s amazing how pro-active you become with a round the world trip looming!!)


Her name is Julianne, and she is a total gem… and she has been so so incredibly helpful! Before the MRI showed this cyst in my brain, she was the first person who could look at all my symptoms and say ‘Yes, you are not a crazy whacko who is just a complete Hypochondriac!’. It’s amazing how relieved you feel when all the symptoms inside your head, that nobody else can see, are understood by somebody on the outside who has experience in this area! The relief was massive!

She did these exercises with me to test for this Vestibular Neuritis and OMG! It was crazy how badly I did compared to how well I would have though to have done. All my symptoms were inside my head so to speak, but these tests she did were able to show the effects of my symptoms externally to me, where she too could see their effects – it was fab! Such reassurance I wasn’t going crazy!

She felt that I had Vestibular Neuritis and also suffering from Aura Migraines (what others get as headaches, I get as visual and motion and memory disturbances) which would be worsened by bright lit areas, busy rooms, too much visual stimulous (one of my prescriptions was to face a corner in a busy room, avoid shopping during busy times and don’t face busy bookshelves! I kid you not…. and in fairness it does have an effect on my symptoms). I’ve been doing daily excercises to strengthen my Vestibular and see if this could be part of the cause.

I definitely do feel that this is part of what is going on but need to rule this brain cyst out as the symptoms are just so incredibly similar to those with Symptomatic Pineal Cysts. However, I feel I may be a long way off getting any proper relief as I have been doing these exercises a while now and although my symptoms have not worsened in a steady decline as they were… some days they are bad and some days not as bad, but overall they are the same level daily, It would be great to know a timeline on relief….it would be fab if it is the VN  because then I wouldn’t have to have my skull cut open….. but am desperate to have a proper concrete diagnosis so I can get on with things and see a light at the end of the tunnel so fingers crossed and watch this space! I am still waiting to undergo more tests and see more Neuros, etc.

After all this long blurb…. essentially, I don’t yet have an answer yet… which I why I was avoiding writing it…..Maybe it’s vestibular, maybe it’s just stress, maybe Penelope is causing problems… I dunno… it’s a waiting game… but all I know is that nothing is stopping me from going to Peru on my Ayahuasca trip or the Outback in Oz…..after that….we’ll see!!


I know this was a long read peeps, but you never know who is going to read this and  who it might just strike a cord with. I know it felt amazing reading these kind of blogs when I was looking up my symptoms… so I hope I can help someone with theirs…. even just to add some hope and let you know you are not a total looney!!