Feeling Delirious March 22, 2016 9:55 - 11:50 P.M.

[Kady]

Hopefully, there are more people who have found help than not.

If not, please keep searching-it's essential. <3

There is always a "slight delirium" I'll feel with trouble telling exactly what is happening around me, what I'm saying and whether or not I'll be able to stand, have "enough energy" or even be conscious for even a few more seconds.

From what I can tell from self-observation and great amounts of health research, I seem to possibly have low blood circulation throughout my body, especially to my head.

I've lived with Hydrocephalus since birth, having a shunt since infancy.

This shunt has caused countless problems that, mostly, remained ignored, no matter how serious the problems caused were.

At a young age, I used to think the problems I dealt with were normal and that people just pushed through whatever they were facing.

With age progression, I found that there was no way for someone to truly function properly with everything I endured.

Somehow, no matter what I was dealing with, the things that overwhelmed me seemed to occur without notice continuously.

I guess people just thought being confused with personality changes, frequent fevers and various kinds of seizures, a slow gait, trouble breathing, seeing and hearing as well as becoming unconscious regularly was just the way I normally was?...

I'll never fully understand the way my life used to be.

After the intense amount of pressure that built up in my head throughout my life was involuntarily and rapidly drained through my ventriculoperitoneal shunt (a tube that helps excessive cerebrospinal fluid to be drained), I've had health issues remain but a change in my perspective on life.

For example. time passes differently since there isn't nearly as much pressure in my head and, therefore, changes in the processing of chemicals in my brain.

Instead of days passing almost as though they are blended into one piece of time, I can tell days apart more easily.

Also, instead of rambling incoherently with a complete lack of physical sensations, I'm able to tell some of what I'm saying and, at least, that I'm even talking.

Very frequently, I'll ask people if they're following what I'm saying and if I'm making any sense.

Because of constant exhaustion and frequent fatigue, I always hope to make sense so that I don't need to try to wrap my mind around the current situation-no matter how intense or not-that is already very overwhelming.

I always have a headache, bodily numbness and neck stiffness-all of which fluctuate.

With stress-some or an extreme amount-I'll feel as though I've become numb and weak with an increase in bodily temperature and neck stiffness.

During moments like this, I'll be too overwhelmed to speak and, sometimes, will experience delirium with auras and severe, general muscle spasms.

If my blood circulation becomes too low, I seem to have fatigue that lasts for hours or experiences that appear to be seizures but could really be a lack of blood circulation to my body and my brain.

Although it can be true that Hydrocephalus (excessive pressure in the head, which I was born with) and ventriculoperitioneal shunt malfunctions can cause seizures as well as many other health problems, I don't think I've been having seizures for years.

While the pressure in my head and the damage the buildup of intracranial pressure as well as the rapid release of that pressure could have caused seizures in the past, I think the more-recent experiences might have been a lack of blood circulation to the mind.

When I feel as though I have a lack of blood circulation in my body, this feels different from the feeling of seizures resulting from shunt malfunctions only because the overwhelming pressure or draining sensations in my head from CSF buildup or drainage is replaced by the general feeling that my body is lacking something-almost as though I've become hollow.

This can last a few minutes to half an hour with severe delirium resulting and lingering for the next few hours or days.

During seizures resulting from shunt complications, my mind is cold and scalding with crushing, stabbing, shocking feelings.

My body feels like it's under immense pressure with shocking, numb sensations and a lacking ability to speak.

This can last for a few moments or hours, depending on how my body is affected.

However, like when my body seems to have a lack of blood circulation, severe delirium lingers for hours or days.

Outside of this, I'll always have a mild or moderate level of delirium with fluctuating levels of pain and muscle stiffness.

When I'm tired or getting tired, my heart seems to beat heavily.

Once this happens, I have a very limited time to get to bed before I'm too physically fatigued to do much of anything.

Processing much information seems to almost be "too much" for my mind, causing overwhelming numbness and delirium.

Like sleep paralysis or trying to regain some energy after the body takes damage, "recharging" oneself takes time and patience.

When I'm overwhelmed, I need to give my mind a chance to "breathe".

The length of this post is very extensive, but I don't really know how to exclude anything that has a negative effect on my health.

All of them seem to be somewhat linked despite potentially resulting from different occurrences throughout time.

Consumption of anything worsens any delirium, vertigo or numb feelings that i seem to experience.

Eating much of anything or nothing for a long time will also cause pain with my shunt-almost like it's being pulled too much when I'm hungry and being pushed on from the inside after I eat.

I'm always thirsty and seem to be dehydrated no matter how much water I drink.

Even when i don't drink much, I use the bathroom often.

Needing to use the bathroom is very inconvenient whenever I seem to experience sleep paralysis.

Upon resting, my blood pressure seems to change rapidly, causing my heart to beat heavily.

I'll fall asleep very quickly, dreaming and waking within a minute to five minutes and always having strange dreams.

Even when I stay asleep for a long time, i'll have stressful dreams that i don't always recall.

Sometimes, I'll wake suddenly just to fall asleep again quickly-almost like I've been shocked, then knocked out.

Waking up and getting up are never easy.

My VP shunt is very tight with pressure where the tubing remains behind the arm of my glasses as well as firmness to the distal catheter (the catheter in my head-if that's what it's called) and stabbing, nauseating pressure in the peritoneal catheter (I believe that's what the lowest catheter is called).

I'm always exhausted,

No matter how much sleep I have, I'm almost too tired to think clearly.

Along with everything I'm dealing with, I'll have trouble with my hearing and vision as well as painful static and ringing in my ears, heaviness of my head and body, facial pain and an apparent low tolerance to heat and cold.

Honestly, I have no idea what any of this truly means.

While I've been trying to take care of myself and recognize when I need to make sudden changes to my plans in order to have enough energy for the next day, something still seems to "go wrong" much of the time.

I don't have a doctor and I'm unable to get one right now (I live in America).

Because of this, I've been trying to study what i need to do and practice taking care of myself.

I've heard that lavender and peppermint are good for fighting anxiety and increasing blood circulation, but I have yet to test that for myself.

Cayenne pepper seems to help with blood circulation, but it's a bit much to eat very often because it's spicy.

Dark chocolate and cocoa powder seem to help to a degree, but I hardly ever consume them.

Drinking water is very good for fighting headaches and increasing blood circulation, so I've been doing that often and daily.

I've heard that there can be muscle spasms in the head.

Can a lack blood circulation cause muscle spasms?

They already seem to affect the rest of my body, so I'm wondering if there is a connection between them.

If any of you can relate with how I've lived with complications of Hydrocephalus and shunt malfunctions or any of the other issues I'm having, you are not alone.

Somewhere, there are people who are feeling what you're feeling.

Although people aren't fully capable of helping out who they care about, they are at least able to show support for those who need it.

You are not alone. <3

[MXman]

Hi Kady,

Wow an impressive read. I had my Bi back in May last year due to an MX accident so can't really relate to your shunt but can relate to the experiences you feel with blood circulation.

While in hospital I had my bloods checked daily and my blood pressure check twice daily and it was high on all counts. The second number of the blood pressure reading was high the diastolic reading ( the pressure of the blood when your heart rests between beats) anyway I experienced some of the symptoms you were talking about, felt really weird.

Out of breath, week and dizzy and sometimes just felt not me. Could have been the Bi coupled with high blood pressure but it was recommended I use a 24 hour BP monitor which again showed high BP so I was put on a small dose of Ramapril. After a month I felt so much better and now feel better still, must of had the high BP for a while. Im pretty fit and train regular in the gym for my MX and now riding is better due to my BP being lower. Couldn't believe it.

What you say early on in your post about not being alone is so true. This forum has been a life saver for my because early on in my Bi recovery I thought I was alone and going totally mad. Not realising others had these problems too. The realisation to accept the injury I couldn't recall getting and to accept that I was never going to remember how it happened in my own mind. I so wanted to reason with how it happened and learn from the mistake I made on the track but couldn't.

Im with you on you trying to reason with whats going on with your feelings but maybe you just have to accept them.

I truly hope you have a fantastic peaceful Wednesday. Good Bless, Nick XX

[Kady in reply to MXman]

Thank you for sharing, MXman.

There isn't anything about my experiences or current situation that hasn't been accepted, really.

In fact, acceptance of everything that happened and how its remnants remain is precisely why I'm searching for whatever I can to help myself as well as my family.

Unfortunately, this hasn't been going well for years because I'm only able to do so much as a dependent with an overly-stressed group of people around me.

Sadly, they don't relate to me or one another.

In a way, we are a group of people who have become isolated from one another because of our experiences.

This is why I reach out to online communities.

Without them, I would still be lost in the jigsaw puzzle of the writing in my notebooks, trying to figure out what my writing from another state of mind means as I continue to use it as my only outlet.

When one speaks to himself through his writing, he is simply seeing himself through the eyes of his reflection.

This can bring great epiphanies as well as terrible depression and madness.

That is exactly why communities of any kind are vital for our health.

People should never become shunned-that is no healthy way to live.

I'm happy that you've shared your story with me, Nick.

I truly hope you're making the most of your days and cherishing whatever feels right. <3

[Johnny-One]

Thank you so much for sharing your story I enjoyed reading it so much and can feel a lot of what you are going through. I was nearly in tears as I read it. There are many things you have said that resonated with me, although our conditions differ considerably in so many ways.

I had bronchitis and pneumonia as a two month old. I was in an out of hospital for quite a while and on life-support. My parents did not think I would pull through and were often told to prepare for the worst. At the age of 40 I went through a similar episode, although just prior to this I was involved in a 140 mile-an-hour road accident. I landed on the wrong side of a motorway due to an error on the part of a white-van driver, who owned up and apologised, but I managed to write-off seven cars. Luckily no one was hurt, but I was knocked about a bit. Also I had an accident going for my black belt in Judo where I became unconscious for 35 minutes. I was still walking around and talking, but I have a complete loss of memory from being on the mat facing a young gentleman to facing a paramedic.

Anyway as a result of my illnesses and life choices, and many visits to neurologists, sleep specialists and other consultants most of which did not help I have discovered:

•My left ear has never worked even though I was sent for numerous hearing tests as a child. My inner ear was not formed correctly in the womb.

•I have had headaches all my life, sometimes very severe, although I thought they were normal. I had no idea what normal was since I probably had them from my first illness as a two-month old.

•My lungs are that of an old man and even though I was given the slipper several times in PE for not trying I could not understand why I could not run as well as the other children. I still managed to attain my black belt. May be that is why I push myself so hard.

•My heart rate is incredibly slow it beats at around 50 to 60 beats a minute, and I believe my blood pumps slower around my body too, hence the headaches due to lack of oxygen in my head, but that is theory and supposition not fact. Also I get tired easily too.

•I have a severe sleep disorder as confirmed by many specialists but no-one wants to neither put a diagnosis on it nor help me. I drop from wide a wake to deep sleep in seconds and then back to wide a wake again without going through the relevant phases. I can remember many of my dreams, and often walk and talk too whilst asleep. Often my body continues to function whilst I am asleep, which concerns those who do not know me.

My ways to cope are I am on Topiramate (200 mg daily) for my headaches, Gabapentin (400 mg on an evening) which is a muscle relaxant which helps me get the seven hours sleep and as a result helps with the headaches, and Symbicort (morning and night) which is a steroid/anti-bronchial inhaler that keeps my lungs working. At the lowest point I went for two years without sleep whatsoever. I also do not have caffeine; that means no tea, coffee, chocolate (most white chocolate is OK), nor any form of pain killer. The first few weeks coming off caffeine were hard but this was by far the best thing I have done.

I hope my ramblings have helped your research in some way.

I have found the best thing in life is to know you are loved and know you are beautiful. Everything else fades into insignificance once you learn these two things.

[Kady in reply to Johnny-One]

Thank you for your response and for sharing your story, Johnny-One. <3

What you have shared is helpful.

Thank you for your kindness.

Unfortunately, there are times when there is doubt in the presence of love and beauty.

Still, the main objective is to strive for oneself in order to help others.

That is the best way to live.

Truly, striving for others helps the soul find peace.

That is what you and others have done by sharing your story and showing kindness.

Thank you very much. ((_^))

[Kirk5w7]

Hi Kady, your I cannot imagine how difficult each day must be for you. I admire you greatly for sharing your issues with you, I just wish I could make them all go away.

I know how different my daily life is now and although I have recovered remarkably every day when I wake I am reminded how different my life now is. I never have what used to be a normal day, it is just a matter of dealing with the issues.

As time goes on I am getting better at it, I know how to get the best out of me and can now achieve something daily. I have been blessed with a very loving family who understand and support me in everything, that means so much.

Take care Kady, I am with you in thought every day .

Much love Janet xxx

[Kady in reply to Kirk5w7]

Thank you.

I'm sure you're efforts and presence are appreciated.

I'm proud of you for striving so well.

I appreciate your kindness. <3

[Kady]

Sorry about the misspelled words. haha

Have a nice day.