– HBO (mild Hyperbaric Oxygen Treatment) home
of chambers used;
Dive portable soft chamber; pressure; 1, 3 ATA, Oxygen 10 L/m from OGSI
Used this chamber for about 2,5 year. Between 1 and 2 hours each
I got better and off course very interested in this equipment and treatment, I
upgraded to a:
portable soft chamber, pressure; 1,7 ATA. Oxygen; 10 l /m from OGSI
time each day; Between 1 and 3 hours –mostly about 75 minutes. The first 3
months and on days with extra needs or acute need, up to 3 hours!
in mask outside the chamber, up to 10 hours per day. Now about 3 hours.
about treatment taken from;
BSc MPH PhD and
Dr. Philip BJames MB CHB DIH PhD FFOM
Emeritus Professor of Medicine University of Dundee. Scotlaand
regarding equipment; I had great help from Chalie Johnson, PT/ANDI who produced the FlexilIte at that time. As I experienced
many problems in the start of my treatment as I, for instance, was not able to
use some standard equipment. And this eqipment is unknown where I live. All
have been fantastic and excellent in sharing their experiences and expertise. I
greatly appreciate their help and kindness. Starting this treatment with this
equipment was my own choise and responsibility.
Lung tissue damages after EDS, scar tissue after many pneumonias. Left lung especially
Spinal damage paralyses etc. after back operation.
Chronic sciatica after operation.
Nerve muscular damaged to the urine bladder after back operation.
Interstitial Cystitis; Painful Bladder Syndrome
EDS Ehlers Danloss Syndrome - a rare multisystem tissue disease. Diagnosed about 10 years ago.
Chronic Long-term nonmaligned pain syndrome
Post traumatic stress disorder
Damages, ulcers and irritations of the stomach and intestines mucous membranes
Plus the unique symptoms and chain reactions..
Sleep apnea - not traditional, but I stopped breathing under sleep, due to
extreme pain. Confirmed by sleep
-Other diagnosis under suspicion but not possible to
alternative treatment, etc.; Have tried
a lot especially for pain relief. Both traditional and alternative medicine -
but all abandoned and given up. Has been given up on all places many, many
years ago -the only place that kept a treatment open was Department of Urology
at the Odense University Hospital. Ended finally when I got the hyperbaric
chamber at home.
am one of those who need antibiotics in the house so I can start treatment immediately
I feel any symptoms.
recent years, the periods taken Melatonin before bedtime with good effect.
Medicine; Prevention; Serevent - Acute medicine; Ventolin.
In this update, I will use the number
scale as it gives a good picture. It also makes it possible to separate the
various symptoms and the diagnoses.
is ”nothing”, "not problematic" and 10 is the max you could imagine,
and where death is desired!
still have a simple, healthy lifestyle. Every morning one hour of physical
exercise, partly to maintain my modest walking function, and of course general
health benefits. Still have no lifestyle diseases at all.
The improvement /changes;
Spinal cord injury;
In 1991, I had back surgery, I had symptoms from a disc that was found needed to act on, and it was found to be good for a new, gentle type
of operation. There were errors during the operation.
have been informed that the damage is as this; among other things, the sciatic
nerve has been damaged, and the place in the spinal cord that arise from, the
"Chronic electrical transition" and produce constant signals about
violent injuries. As if you were run over by a train or were sawn through with
a saw - that physical damage - disaster signals requiring immediate action to
"stop the accident." This meant, of course, immediately a huge stress
level - nothing has been able to dampen this level of pain at all. Or just dampen the spinal cords error signals.!
It has been the cause of chronic cramps
in my nerve system.
I've managed to hide most of it but I have had
very violent convulsions similar to epileptic seizures. I stand ”in a bridge”
from the heel to the neck, or cramping with no possibility of control. There
arises of course lots of damage during these chronic cramps and as the multisystem
tissue disease EDS (Ehloss Danlos Syndrome) give fragile tissue occurs of
course plenty of new injuries constantly.
from the operation, my right leg was paralyzed. I have among other things strong
drop foot and uses crutches and electric wheelchair. My walking distance without
crutches is limited to walk across a street, but I am not sure to be able to
walk back again! The right leg feels like it has been in the freezer and frozen
(Minus 20 degrees) and the rest of the body buried in the red-hot burning lava,
that is, two violent contradictions! This can cause major problems with wind,
weather, temperature etc! I can freeze in mid-summer in a heat wave and sweat
of a burning sensation in the middle of winter!
I am only able to walk because I WOULD rehabilitate it and still enforces
training every day.
you get an injury you compensates for relieving the damaged place. It also
happened in my body. And it soon spread all over the body when the pain signals
the branched to the entire body, which immediately began to pull askew in
muscles, tendons, joints, destroying cartilage, nerves, joint capsules, damaged
discs, everything from the large curvature of the spine to the tiny attachments
between muscles, tendons and bones. The whole body cramped up violently.
level of pain was so extreme it affected my sensory perception of the
surrounding world; vision, hearing, ambient motion and so on. The minimal
movement to make the breathing made me want to scream at the weak impact /
movement / provocation of the surgical place.
THAT has been my basic, constant pain level every second since!
was also immediate damage to the nerve supply to bladder and stomach.
Spinal damage combined with
bleeding in the tissues and organs; Due to EDS for many years I had
almost constantly large blue-black spots due to the spinal cramps gave bleeding
in the tissues. Also, heavy bleeding in the bladder.
My chronic spinal cramps and
impacts are today, on average, down to about 5 on the scale - where for many
years was 10 without any signs of lowering just a little! So this decline in
chronic seizures in muscles, tendons, attachments of muscles and bones, etc. is
Pain - in general, overall health- on the scale from 1 to 10. There has been a consensus among
specialists about the level has remained at above 15 on the scale, (but since this scale only goes to 10, its a clean 10) from 1991 and
to my start with HBO!!
can now accommodate / imagine a "nerve atlas" or the feeling of again
having a whole, symmetrical body, not fragmented. Before it was impossible to accommodate the
experience of both frostbite and burning, red hot heat. Has now wholeness, an
overview, not just the places here and now hurts the most.
Pain in general is now down to 9 at maximum
load! On days without max load but with "normal daily activity" about
7! I challenge my limits every day.
gone from being completely helpless. With useless hands that could not do the
most common things nobody really think about, like being able to hold a brush
and brush your hair, brush your teeth, rob lotion on, hold a pencil, etc. As
the tensions muscles, movements etc. to be used on even such simple things
triggered chain reactions; convulsion, extreme pain, dizziness, vomiting, etc.,
and so on. And I had to lie down to prevent major seizures. One example - to
peel a few potatoes or carrots, clean up the kitchen - max activity about 15
minutes so I had so many convulsions and chain reactions I had to lie down for
several hours in order to try to control the symptom situation!
the 4 years before HBO, I had maximum 2 to 3 hours of activity spread over a
today where I can a lot of things
"you do every day" Still with rigid braces and heavily fixation but can
now do many things with "complicated" methods, I mean many different
movement, loads, etc. And can also work
with my art and craft again - many techniques I havent been working with for
The chronic sciatica, still very painfull, still feels like I have way to short rubber bands all the way to my ancles. Makes some movements imposssible. Even provocated by breathe.
Have gone from 8 to 5 on the scale !
Hands, fingers, wrists. Scale for hands
fingers. Before 9 - now at max load 8!
Far greater strength. I am able to train them; increasing endurance and ability
to hold on and perform fine motor skills. Far more strength to perform many
more everyday things (brush teeth, open the doors (key!!), squeezing a cloth,
open lids - without going out of joint all the time. I have plenty of tools and
have even found many creative solutions
and alternative use of tools and instruments. Much less general pain. Still
weakness to cold, and often use gloves or felted armbands under my arm braces.
Have braces on all fingers and arms, wrists braces up to the elbows.
Arms, shoulders, neck, jaws. Problems and pain scale
before 8 now 6.
teeth. Do not have a stable bite – My teeth can’t find a natural resting place.
Then my jaw joints are tired because they are constantly slipping and seek a
resting position. My jaws are hypermobile, cartilage defects in the joints, the
bones are rubbing against each other. There are loud noises from "crunchy
thing". Every bite of course very painful.
patients have difficulty finding a dentist. We are obliged to inform about the
problems with EDS patients blood clotting, extremely bad wound healing, bad scars
- we need preventive antibiotics even for a simple teeth cleaning. Our jaws are
easily dislocated. Painkillers rarely works, anesthesia is difficult! The
spinal cramps even did the tiny attachments in temples made crazy evil - and
spasms rippled down over the neck, shoulders, arms... to the back and was thus
part of chain reactions.
Neck - Major problem area!!! Due to
changes in the "soft tissues”, I have severe symptoms. Have had a joint
capsule trapped in a few years - now, tension, tendons, headache, dizziness,
etc. Uses a neck rail / collar occasionally to stretch and force in the normal
Sleep, from back surgery in 1991 to HBO
start, only a few hours of stupor a day, never sleep. Always cramped. Never
rested after a long hard struggle to get the body to relaze. Being present in
pain is a tough battle. Sleeping in a painful hell impossible.
I got the chamber with higher pressure, I slept the first months up to 10 hours
a night, plus an afternoon nap at about 3 hours!!!! Unbelieveable !!! Now
average about 7 hours each night and often a short sleep in the afternoon.
Daily life; up by 5 am, work out,
bath, breakfast and light housework activities .. rest - activity again ...
often creative work. rest .. activity ... rest .. out socially .. rest .. and
HBO in between!
more activity and a lot of restitution!
Restitution - the natural function to be active and get tired -
rest, sleep and regain energy and effort is an unimaginable thing to lose and
then get back. The well-being prevailing in the body for healthy sleep is
fantastic. Before, I had maximum 2 -3 hours of activity during the day - all
energy went to master and fight cramps, etc .. now I'm up early - very active -
rests - asset rests throughout the day .. Boggles!
The bladder. For the first time responding
directly to the treatment! Both acute and long-term.
reaction interact with / provoked by spinal cramps, cold, pull, shake,
sneezing, coughing, food, drink, bladder spasms, chronic for many years.
Catheter Sizes; during periods of most seizures in the years leading up to the
HBO treatmeent (size 10 smallest) to 14 (largest) as the treatment progressed.
Today,I use a mix of three different
Urge; can easily have 40 a day!
is when the brain receives the message that the bladder is filled to maximum capacity
and needs to be emptied NOW, regardless of whether there is urine in the
bladder or not !- The messages come from
a nervous system that are beyond your influence! My urge is so violent I must
control myself not to crack in half of the body and screaming into the floor
and hold my hands over the bladder. I get goose bumps, chills, cold sweats,
vomiting, visual disturbances, fever, severe pain, freezing feeling throughout
the body, stiffness throughout the body, even the fingers!
Pelvic area completely cramped, extra hard to
walk as my right leg gets extra
paralyzed, so drop foot more pronounced, and may involuntarily curved
together and shiver and let out a gasp when someone just comes to touch my arm!
Pelvic / Bladder Area very swollen. Requires fluid supply in connection with
the activity - in fact, important to plan otherwise a social life become
generally; before; clear 10 - now average about 7. At
maximum load 9.
inner protective layer of the bladder is gone and I still react strongly to
food and drink. Must drink crazy amounts of water to neutralize. Otherwise, one
can generate mast cells that make you very seriously ill (poisoning symptoms)
Bladder feels like an open wound in the middle of the body. Urine acid by
boiling in open wound.
chronic bladder spasms, activated off 10 to 8. As my spinal cramps got dampened
the bleedings are more rare now!
a person with totally destroyed nervous system and the diagnoses that belong with,
or people who work professionally with these problems, knows how terrible a
sick bladder can be. I have often had an urge to remove it with my hands -
physically remove it from the body!
bladder was already 1year post back surgery so sick it made me unable to work!
Bloody vomiting. Wounds / mucosal
damage throughout the stomach / intestines due to EDS.
to food and drink - before up to 12 times a day, now down to about 5 to 6
times. Much pain and distress due to mucosal wounds. That is, the protective
layer is damaged. Very painful condition!
Tissue fluid bound in tissues from treatment with
corticosteroids Artificial. Not much change.
Depression / post-traumatic stress - in my case, these
diagnoses listed above are not the originators of depression and post-traumatic
stress, but the suddenly inflicted extreme pain level made the body a prison.
"Hell on Earth" as I call it. And of course, reinforced stress and
depression much. Without the option of a second of rest and tranquility -
subjected to violent stress, no sleep for years - I have felt like a trapped
animal in hell for several decades. Desperate for just a second's peace ...
After HBO it is of course much easier to use the mental techniques I developed
just after back operation and free myself from the deep depression I had. Is
still vulnerable but mostly in terms of stress and take care of the things that
trigger my symptoms of stress. But much more robust.
mentally a huge profit as I felt I used about 98 percent of effort to master
the symptoms and the total required self-discipline just to survive.
Cognitive - now has a huge
surplus, thinking quickly, concentrate, is present, work creatively, logically,
calmly. Do not force movements due to pain in the same degree as before. Lots
of creative work. Can again work with long complicated work processes where I
used to have difficulty pressing the button on my computerized embroidery machine
or change the thread on it!
A few more examples; Have gone from having
difficulty manageable to open the door for parcel post, or call and make an
appointment with the dentist to sometimes feeling to have mental resources to
participate in a handball fight !!! - All 60 minutes of full effort with
physical and mental energy bursts, tackles, etc. - of course I cannot with paralyzed
leg, EDS, etc., but MENTAL I HAVE SURPLUS and desire to join a full 60 minutes handball fight.!
now throw myself spontaneously into projects, before I had to consider and plan
but often abandoned because surplus and energy were missing.
Eyes, eye pain. Dryness. Nearsighted,
Astigmatism in one eye. During an ordinary sight test, it changes a lot,
therefore difficult to relate to - and find the right glasses! Wear glasses all
the time and uses a magnifying glass to some artwork.
following changes a lot; Tunnel vision. Do not always have visual system.
Double vision. Often difficult to read from left to right. My right eye finds a
word, and from there it is faster to create word pictures and find an
understanding than to read normally from left to right. Neck problems can also
affect my vision significantly. HBO below 2.0 ATA does not affect vision. My
eyesight has been problematic throughout life. The sight affected by cramps and
general pain level. Red mist to the eyes due to severe pain.
Heel spurs -pain in connective
tissue under your feet; have had the most of life, at times difficult to walk
normally. Especially if I switched shoes often. Have not been able to feel the
difference in weight changes. Scale; Before 7 now 2, although I strain feet
much more now more exercise and activity.
The nasal partition - I have a big hole in
the middle of the nasal septum – due to EDS.
Before the cause of much pain like a horse had kicked me in the head and
gave an awful headache, inside the skull - from the cartilage. Got running
eyes. I was extremely sensitive to wind, cold, heat, drizzle, it was an open
door to a poor immune system, and I had chronic infection of the nose and upper
respiratory tract. I had unique aids made -not particularly pleasant to wear!
Had to use all sorts of masks, which I do not use or tolerate. The air I
breathed was unheated and maladaptive pulled into the diseased lungs, especially
left lung reacted constantly cold.
extreme pain and great discomfort if one gets the feeling of a lung becomes cold.
In addition, the infection always sure. When I became so cold inside the body -
lung - was my right leg also always more heavily and foot drop more pronounced
and icy. Thus, I could shiver ... and get seizures! The bladder also reacted
with increased cramping and pain - chain reactions ran in the ring!
pain and discomfort before, eight - now five but still very careful. I get
infection creepy easily and just a sneezing or coughing can cause one of the
major large seizures – must still be avoided!
heating mask for fall, winter and spring to heat the air I breathe.
Bronchitis - still use preventive medicine - almost never seizure medication.
Oxygen therapy has eliminated the vast majority of symptoms. Left lung had
"infinite breath" - and a”dolphin sound”, a rare symptom of EDS.
Still sensitive to cold.
New injuries, injuries in the neck,
upper back and shoulder area. Just about the time when I got the new pressure
chamber home overworked myself tremendously and had severe symptoms from the
upper back and neck - numbness in both arms and hands could sit max 20 min so
violent stabbing pains in the arms, visual disturbances, dizziness, vomiting. Was
most of the day unable to sit.
Unable to close the chamber myself. The first
2 weeks I had others to close it for me, but the symptoms changed completely.
After 3 weeks with this pressure had symptoms changed - I could be out of bed...
The pain from the new symptoms were almost completely gone, but was still very
violently tense up the muscles. I could sit and use hands again. Such symptoms
normally takes me several months to overcome and get back to ”normal”- If even
A normal Eds relateret, tormented
before 9 now 4. EDS-related daily damage, distortions sprains, fiber blasts,
swelling, pain, dislocations, exhaustion etc. etc. - amazing attenuation of it
all - new injuries taken care / dike acute or dimmed over a few days.
severity of one's EDS depends on what complications, other diagnosis you get.
Cramps like those I've have destroys tissue and provides large and small injuries
and hemorrhage (bleeding is a serious problem because our blood has difficulty
clotting, form lasting scars etc) Not being able to top a bleeding is extremely
- Differentiation Activity, fatigue, sleep, activity, sleep rest fantastic
mechanism. Today I feel no sleep debt.
– I still get them but heals better.
Chronic fatigue syndrome;
"From minus to
plus" - before 10 now 2 (both daily and long-lasting effect of mHBO).
Balance, physical exercise much better
balance, work out better, feel much safer when walking.
Still very sensitive to vibration
in the car
- can still trigger violent convulsions – chain reactions.
Immune system - still a problem to be
with many people, giving fever, infections. Good hand hygiene is required.
General overall scale before 10 now
loaded but when you go in the direction I go - from the worst conceivable to
better one is just grateful - every day, new things I discover I can - every
day is a gift!
Hyperbaric Oxygen Treatment (mHBO) has not cured my diagnosis, but it saved my
I'm still complicated, seriously ill, but it has dampened many of my symptoms
beyond recognition. Still have a very high pain level and must take into
account many things. But as long as I have acces to HBO I have A LIFE that I
love and treasure dearly.
challenge my limits every day and must constantly adapt and adjust the demands
I put on myself. I am used to make
extremely high demands to myself in order to implement only the most necessary
- now I have to be aware of new situations and not continue "on
autopilot", because, then just creating new damages .. it requires
alignment- addiction and presence ... and I enjoy being able to enjoy life and
work with art and craft again.
is completely inconceivable.
day I feel a very, very great gratitude to those who helped me to get my own
I am become as adept at dealing with it that I can get in and close the chamber
in less than 3 minutes! The first months it took a long time because I was so
weak and I had to take many breaks!
I am ill, I experience the artificial environment sensitively and
compassionately. It can be exhausting to close the chamber on bad health days.
But when I can relax and the pressure increases, I fall into a daze. Cannot
keep the eyes open. I feel pain burden and symptoms eased as the
care of gentle hands and I feel just my respiratory and the effect of the oxygen
... and after some time I feel energized and refreshed, clear head and when I
come out, the situation changed completely!
Fantastic - it is by far the most
fabulous medication / treatment - and so completely without side effects!
you for your interest!
have taken responsibility for my own health and treatment. If you are ill, you
should seek medical advice.
you wish to know more, have questions, comments or need advice regarding
equipment please don’t stay away but write to; email@example.com and I will be happy to
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