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Our site, your stories. HealthUnlocked wants to share your health journeys

AmyFree29 profile image
57 Replies

Do you have a health story to share? How did HealthUnlocked help you overcome or manage your condition? Did a supportive community have a vital impact on your journey? We want to know!

We are making a creative collection of HealthUnlocked user stories. Stories about you, your conditions, your health journeys and how you use HealthUnlocked. This collection aims to share your real stories with fellow users, communities, our website and much more.

Whether you have recovered from or are still managing a health condition, we want to hear from you. For more information or to contact us about participating in this exciting new story collection click the link below:

research.net/r/WKLN25C

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AmyFree29 profile image
AmyFree29
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57 Replies
Matt2584 profile image
Matt2584

Hi,

I have got a brain injury and suffer/suffered with fatigue just like many other BI survivors.

I used to get tired quite easily. I am also an artist and after a session of drawing fatigue would kick in big time, it would feel like my head had been loaded with cement :).

A few years back, I started to look into natural/holistic medicine and I found out about essential oils and frankincense essential oil in particular is very good for brain injuries as the oil sends oxygen to the brain which is what the brain needs in order to heal.

For the first few weeks of inhaling the oil right from the bottle I noticed a change, I wasn't getting so fatigued. I'm not saying that frankincense essential oil is a wonder drug but it does help immensly and I still use it today.

I don't have a lot of faith at all in pharmaceutical medicine these days as they are out to make money and that is all.

Nature will prevail :).

foxglove profile image
foxglove in reply to Matt2584

Hi, thanks for this info. My husband has been diagnosed with Alzheimer's and while we have been told it is a progressive illness with no known cure, I think it is worth trying anything that may help. Husband attending clinic and on meds., but like you I don't have a lot of faith in "Big Pharma"... I'll certainly try frankincense, and it smells lovely

Matt2584 profile image
Matt2584 in reply to foxglove

Hi foxglove,

You are correct their, frankincense does smell lovely indeed :).

Sorry to hear about your husband's Alzheimer's.

I am sure I have read before that coconut oil is good at helping Alzheimer's. I use coconut oil. I use it as a mouth wash, or oil pulling as it is known by, and I also add a spoon to my home made smoothies. There is a lot of things you can do with coconut oil.

Scientists' say that aluminium is found in the brains of Alzheimer's patients and yet aluminium is an active ingredient in most spray-on deodorants!

Why add something to food, water, cosmetics, toileteries... And so on if it is going to cause harm?

I think there is something more to the authorities/government that meets the eye.

foxglove profile image
foxglove in reply to Matt2584

Thanks again didn't know about coconut oil's benefit re. Alz.. Going to put some frankincense drops beneath husband's pillow and see if it helps . Will sniff it myself as I think I need it too. Have read your profile and admire your spirit and quirky humour (mean this as compliment)!!!

p. s. thanks for sympathy, one learns to live on a day to day basis and yes there is humour even with Alz. I try to enjoy good days and muddle through bad as well as I can. Think you sound similar

Good luck and wishes

Matt2584 profile image
Matt2584 in reply to foxglove

Thanks for admiring my spirit and quirky humour... I think :).

I am pretty sure I have read things a few times online about coconut oil battling and even preventing Alz. The best thing to do would be to research it for yourself. You can look for natural health tips from doctor Mercola, Natural News, Living traditionally to name a few. There are more websites and also youtube will help with the many helpful and informative videos people post.

I can be similar, enjoy the good days and try to get through the bad.

I would not be surprised at all if my diet when I was little was what brought on most of my head problems. When I was little I had the typical junk food diet. Terrible diet, full of sugary foods and drinks and rarely any natural foods. One of the ingredients I now know of and despise is Aspartame and this can be found in all sorts of diet drinks, cordial, yogurts and more and it can cause a multitude of health problems including brain cancer.

The deadly chemical, Aspartame, was bought out by a big chemical company in America called Monsanto and Monsanto have basically been killing millions for over a century now.

TRISHLIN profile image
TRISHLIN in reply to Matt2584

You are right on!!! Big Pharma ought to be brought down for their lies and their 'BAD' drugs they keep pushing on doctors and ultimately on us patients. The more we learn from ourselves, Dr. Mercola and other natural supplement advice from homeopathic physicians, the healthier we will be. We need to be more 'intentional' about what we put in our mouths and this hurts big Pharma. Read and study, thats the answer. Thanks for posting!

Matt2584 profile image
Matt2584 in reply to TRISHLIN

Yes, I agree. We definitely all need to know what goes in our bodies. Food isn't quite what or how it appears... especially processed food or FAKE food as I call it. Real food is what comes from the earth. If real food comes from the earth, then so does real medicine too. The biggest problem with the world today is the money going around. Corrupt man think they can better nature, it is impossible to do.

If they really want to better nature then they will have to do a number on themselves first because these evil, greedy people are the most natural things going only with corrupt minds.... or are they REALLY people?

LiisaM profile image
LiisaM in reply to foxglove

nutritionfacts.org/video/do...

foxglove profile image
foxglove in reply to Matt2584

p.s. meant to say that ROSEMARY essential oil also claimed to be good for memory...."Rosemary for remembrance"? think that is remembering more past memories but also good as long as happy. Frankincense is I think to help with up to date material

Matt2584 profile image
Matt2584 in reply to foxglove

Yes that's right, rosemary for rememberance. I have read that smelling rosemary either from bottle of essential oil or from the flower itself can boost the memory by 75% but another source will tell you to sniff rosemary for 5 minutes per day in order to boost memory.

dckimberly profile image
dckimberly in reply to Matt2584

or you can diffuse it in a pan of boiling water, thereby working on allergies and cleaning the air around you also. Add three drops of lavender to that to promote soothing and muscle pain. Again, first check with a doctor for those of you with any illness before setting out on a holistic regimen.

foxglove profile image
foxglove in reply to dckimberly

Thanks for additional info.,didn't know lavender soothed muscle pain, thought it was just for calming and relaxing, good to learn things!!!!

Agree that MOTHER NATURE does sometimes need a helping hand and it would be silly not to use whatever one can

Matt2584 profile image
Matt2584 in reply to foxglove

I use lavender for aches and pains now. Because of my brain injury I have poor walking balance and I, without really knowing it, have to stand slightly awkwardly in order to maintain my balance and the muscles around my left knee joint can feel sore a little at times. I had tendonitis in my hand a while ago and treated that with lavender. My mum has been using lavender for years. She rubs some on her back every now and then.

foxglove profile image
foxglove in reply to Matt2584

Thanks for reply and info re. lavender

52mags profile image
52mags in reply to Matt2584

Hi Again mat2584 lavender I also put a few drops on my pillow at night helps with sleep

Matt2584 profile image
Matt2584 in reply to 52mags

Hi mags,

That's right, lavender is also really good for helping you sleep. It is calming and so is frankinsence essential oil.

Diddums profile image
Diddums in reply to Matt2584

Even more worrying is what is being put in vaccines......WHY?

Matt2584 profile image
Matt2584 in reply to Diddums

Hi Diddums,

I am interested in conspiracy theories and what you have said is where you might want to look into the Illuminati's Agenda 21 or even Agenda 30.

Some of these conspiracies are interesting but not all are completely believable. Some are just theories and some are facts.

It is disgusting the amount that goes into vaccines and it is totally unnecessary as well.

"Why do they put mercury in our vaccines?"

"Why do they put Aluminium in most of our spray-on deodorants?",

"Why do they use Aspartame to substitute sugar in most diet drinks? and the FDA allow it!!"

There is a lot of lies going around in the world today and a lot of people payed off in order to lie.

It is a sick world we live in.

I am going to share a video of a man called Patrick Moore who used to work for Greenpeace but has now been bought out by Monsanto (Money, money, money again) and is being interviewed on how glyphosate (key ingredient in Round Up) is completely "safe to drink".

Round Up is a weed killer that is sprayed all over our crops and the public buy and use it too. If glyphosate was sooo safe then you would gladly drink it when it is offered to you.

TRISHLIN profile image
TRISHLIN in reply to Matt2584

Agree!!

LiisaM profile image
LiisaM in reply to foxglove

Hi foxglove. We have the same situation at our house. I have found that the meds REALLY help in our case. I called our doctor on an emergency basis and they really helped immediately. However, check this out: nutritionfacts.org/video/pr...

and nutritionfacts.org/video/sa...

and nutritionfacts.org/video/sa...

Understanding your plight!

LiisaM

foxglove profile image
foxglove in reply to LiisaM

Hi thanks for reply, very interesting link, and I agree that meds. do help and find that doctors etc. are good in emergency basis

lonestray profile image
lonestray in reply to foxglove

Alzheimer's for me is now just a memory. In December I'll have lost my wife of 52 years to the cruel illness. Like most things in life I chose to manage the illness in my own way on my own. The time came when she could no longer feed herself, was doubly incontinent and wheelchair bound. Our large six bedroom home and land was too much to maintain on my own, and felt forced to place her in a Nursing Home. In that one year she was reduced to less than six stone. Each day I spent eight hours visiting her and tending to her needs. Finally exasperated with the standard of care I decided to downsize and take her home. Because she was bedridden I was advised against removing her, but I ignored the advice. Our local GP insisted I not force feed her, plus I still retain the medical records. One entry: "Husband knows she is dying". Within a matter of months the records were closed and I was happy to carry on my own. To cut a long story short she lived further four years and seven months, plus she returned to her normal weight: about eight stone. Over that period I filmed and photographed her progress.

After her passing I was finally diagnosed with stomach cancer. Over the years my GP diagnosed: Irritable Bowel Syndrome. Seven years to this day I've survived a Total Gastrectomy and like most aspects of life I chose to 'my way'. When I was informed I had cancer I decided to risk discovering who my relative were and why I was denied a childhood. I'd grown up to the age of sixteen in the belief I was an orphan. By the age of seventeen in 1949 I left Ireland to join the British Forces and blotted out every memory of Ireland. From the vast number of record I've obtained I've pieced together an amazing story. Suffice to say the first document shocked me. It reads: appeared at Dublin DC on the 10-2-34 age 2 2/3. What charged with: 'receiving alms' By whom committed: Justice of the Peace Cussen. Sentenced 14 years. It then goes on to record that I was 'Illegitimate'. That in spite of my birth certificate roves otherwise. In addition I have a copy of my parents marriage certificate.

My the time I was released to the outside world, I was emotionally barren, uneducated and under nourished. Freedom in a strange new world was exciting and I had much to learn in my own way. I'm still learning to discover what's possible. Now as I come up to 86th birthday in six weeks time I look forward to attending my youngest Grand daughter's wedding. My early morning runs of between 4 and five miles keep me fit.

Sorry for such a long post, but that's just a small glimpse of a background I've been ashamed of all my life.

foxglove profile image
foxglove in reply to lonestray

No need to apologise for long post - we are all to an extent products of our past and you have been brave to search. Also well done in caring for your wife in the way you knew was best. You were together for a long time and I'm sure your wife understood how you were helping in a way that drs. etc. and professionals could NEVER achieve ,my husband and I have been married 55 years and I take on board completely what you say ,thanks for sharing.

lonestray profile image
lonestray in reply to foxglove

foxglove,

Thanks for your response. To care for my wife was the most natural thing to do. It is almost impossible to explain the results of growing up in the company of over 160 children. They were all boys from babies in cots up to the age of ten. We were then transferred to adult Industrial Schools to complete our term of detention at age sixteen. There we commenced unpaid work. In my case I worked making and repairing clothing and later went to work in the farm and poultry farm. Up to that point I'd never met a girl or spoken to one. Not until I was seventeen did I discover my date of birth on applying to enter the UK forces. I just about passed the entry tests and was happy to accept to be employed as a Messing Orderly. By the end of my service I was teaching all aspects of logistics. Like everything in my life I did it in my own way.

As I had no home I spent my leave time in YMCAs and B&Bs. On my journeys I met a young girl that worked in a clothing factory from the age of 14. She was kind enough to take me on in marriage. All I had to offer was the dream of a house of our own one day. The dream came through. Alone the way we had three children: a boy and two girls. The younger girl was suddenly killed by a careless driver when she was 15. That was the most difficult challenge in my life. In my childhood years I had witnessed the deaths of some children but was not affected. In spite of everything I achieved my dream and retired in my mid fifties. Now I've been diagnosed with skin cancer some two months ago and enter hospital on the 29th this month. It's no problem to deal with. There's so much to learn every day and it is so rewarding.

foxglove profile image
foxglove in reply to lonestray

lonestray,

Very kind of you to share even more of your life story, you've coped with a lot and came through. Hope hospital visit goes well, as you say "so much to learn". what is a problem to one person is a challenge to another

Diddums profile image
Diddums in reply to foxglove

Thanks to you both I dont have any faith in 'Big Pharma 'either and I will certainly try this too.

dckimberly profile image
dckimberly in reply to Matt2584

hi there! While I certainly believe in the power of nature..I am actually a certified aromatherapist, at the end of the day Big Pharma saved my life. I have serious liver disease and have already survived one liver transplant, which is failing, so now I am back on the list for a liver AND a kidney. While I think holistic medicine is great..so great I was seen as a person to go to when it came to allergies, blending personal mixtures for various types of allergies, in the end the NHS saved my life. And the British Liver Trust is the best community I have found for help, comfort and quality TRUE education.

It's important to be mindful of ALL medication. Nature does find a way..it's true. But sometimes it needs help to house those medicines and have them get to the right place at the right time.

cheering you on!

mhsoha profile image
mhsoha in reply to Matt2584

I had a TBI( traumatic brain injury )1.5 years ago for 3 months i was absolutly unconscious then i opened my eyes and said some words then i used wheelchair then after 6 months i walked some steps now i feel very heavy in my right leg .let say i feel something grabing my thigh and calf.what shall i do? it seems some nerves in my leg or brain has been damaged.i had a very severe diplopia now it is very beter.now i am fighting with depressian. it is very hard.

I am from Iran .my name is Mehran Soha .I am male and 48 years old.I need your help here there is not a nerologic physiothrapist!.if you know what is the reason for heaviness in my leg and if you can cure it .i can come to your country .please help me.atleast send a document that describe my problem or write the name of a book that by reading it can guid me.please

Tugun profile image
Tugun

Hi Matt,

Thanks for the info - I found it very interesting. It is always helpful to hear what others have tried and their experiences. You never know which info will be just what you needed. I'll try a whiff but I have to be careful as I am allergic to a lot of scents - even natural ones.

Matt2584 profile image
Matt2584 in reply to Tugun

Hi Tugan,

Most of the population these days are allergic to something. Again, this is where I think the big reason for that is what is put into our 'foods'.

Lemon100000000 profile image
Lemon100000000

I believe giving help and support to other people suffering is essential for revovery. I am not sure that I have fibromyalgia but I also have health issues regarding not being able to conceive and really bad menstrual pains and finding this site has restored my faith in people. I find the subjects and people sharing their worries with such response a relief. Reading comments has encouraged me to go and find answers, really has been rays of sunshine during my worst painful moments! A great positive experience inspiring me to continue on the right path of finding answers.

PNIAuthor60 profile image
PNIAuthor60

This wonderfully supportive community of HealthUnlocked has quickly become a sanctuary for me where I have a voice among others who are also struggling which reminds me that I am not alone. The support and understanding that I have found here is like no other.

My struggles are Chronic Fatigue Syndrome (1994), Fibromyalgia (2002), PTSD (2007). Since I was 25, I have struggled with marked cognitive difficulties, episodes of losing consciousness, periods of disorientation, slowed processing speed, difficulty with word retrieval, memory, concentration.

Within my medical record is a note from the specialist who diagnosed me with Chronic Fatigue to my primary care physician which says: " Her Spect scan (which measures blood flow in the brain I understood years later) showed findings that are consistent with Chronic Fatigue Syndrome that is mild, global cerebral perfusion deficits. She also has minor abnormalities of her immunoglobulins and she has a positive antinuclear antibody in a titre of 1:160 in a speckled pattern. I don't think that this woman has lupus as sometimes we see this in patients with CFS. I am not quite sure of its significance. I cannot give you any idea of what is going to happen to this woman in the future. She is doing very little apart from activities of daily living and she may have to sort of cocoon for a while until she starts to improve.

Looking at her life, I find it interesting to note the truism that the same degree of psychological stress will have different effects on different people. She has good friends, an adoptive family and she certainly seems to be a person who can take the slings and arrows of fate and work with them. She has a committed spiritual life which appears to be of great value to her in sustaining her through these difficult times. I guess what I am saying is that I do not feel this diagnosis is simple. This is a complex matter."

A matter that no one has ever sat down and talked to me about, within my struggle I always felt scared and a tiny bit crazy because the world did not make sense to me. My medical record also states that tests of memory suggest low-average to average delayed recall of verbal and visual information. "These scores were also felt to be within expected levels, give her measured intellectual abilities."

Within this community and the various communities within the umbrella of Health Unlocked, I have found a home and a family of cherished friends who don't judge me, who listen intently and then share their own experiences both similiar and different giving me the opportunity of learning and being inspired by others.

Recently, my youngest son was diagnosed with early onset Parkinson's at 37 and I immediately came here and found the Parkinson's forum and asked to understand and was warmly welcomed by that community and have learned so much that has helped me in knowing how to support my son. We are both walking for Parkinson's on Sept 9th in our own community here in Ontario inspired by the support I received online from the Parkinson's community.

A long story but in brief: obsessive runner, gym bunny, Spin class adict over 30 years. High heart rate during cardio not recognised as AF. Peritonitis; three hernias at the same time; pulmonary toxicity and close to death; full stroke leading to hemaniopia (blind on the right-hand side); subject of a medical paper; featured in a short video currently circulated to clinicians in the UK and USA; back to exercising and clearing scrub in a nature group. Happy to send you the unexpurgated story in a .pdf!

John

MarySI profile image
MarySI

I am going through the process of getting diagnosed with adhd and have mild dyslexia and i absolutely love this site and the people here have been amazing and great. This site gives be reassurance that my problems are real and i get a sense of a real community spirit here. The suppprt and love here is beyond anything that i could have wished for amd i am grateful for every post and comment that i have read and received. I cannot express how life changing it has been and will be as it is a platform where people can understand each other and even get to know each other.

Junoesque profile image
Junoesque

I am very grateful for finding this site. I have Atrial Fribullation and I have suffered with it for twenty years. Until I went onto your forum I was so anxious about my condition that my quality of life was very bad. But seeing how others dealt with it has helped me tremendously. I realise that it cannot be cured but also that it won't kill me. I have to be calm and it will pass. This is what so many go through and it has helped me cope with it so much.

I think all doctors should give out information regarding HealthUnlocked so that we do not feel so alone with our condition.

Thank. You.

johare profile image
johare

When I started writing this I started four times. This is because my preset mode is I am a nurse, mother and wife with ..... However, have learnt, with the help of this site to say I am Jo. I am have had a 30 year career as a nurse now ill health retired. I have four wonderful children and two grandchildren and a very supportive husband and I am very lucky. I also have Lupus, Sjorgrens, AF, seizures, migraine, hypothyroidism, RA and other associated conditions.

When I first retired I was lost and very ill. I found it difficult to see a way through. This site helped me to see that there are others that understand. I am also not too proud to say that sometimes using my background and health experience to help others, helps me. As autoimmune conditions are quite diverse in their symptoms it helps that there are a variety of people posting and finding links to new research across the world.

Keep talking.

I was diagnosed with IBS back in around 1996/97 - I had food poisoning in 1996 but don't I'm sure I wasn't diagnosed until 1997. When I was first diagnosed I was prescribed Colofac by the doctor but that didn't work for me at all so I looked in the shops to see what else there was - there wasn't much on the internet back then. I used Windeze Gel Capsules for a long time and they worked for me but then I could not longer find them so I started buying Buscupan. I see that you can still get Windeze Gel Capsules but not in so many places; I tried them again a few months back and they no longer work for me. I bought Kolanticon Gel off the internet and I thought that was working well but it wasn't until I had stopped drinking Golden Linseed soaked in water that the pain returned, I took the Kolanticon Gel to stop the pain and it didn't work. The reason I stopped drinking the Golden Linseed was because I wasn't constipated at that time but I will now just have a small amount eat day to see if the pain stops.

I would rather no purchase Kolanticon as it wasn't until I purchased it that I saw it contained Aluminium, I don't want anything with synthetic stuff in it.

There are a few foods I have found to make my symptoms worse and they are raw carrots, both raw and cooked onions, sweetcorn and I can only eat a small amount of broccoli. I seem to also have a problem with dairy so am purchasing Lactose free and caffeine seems to be another trigger. I am looking at the FODMAP diet but need to prepare a menu sheet before I embark on it, this is just to make sure I stick to it properly.

It really is a very helpful forum as a lot of us on here share what has worked or maybe not worked for us and some of us also use the forum to vent our frustrations with whatever condition we have or situation we are in. When you post on here you realise what support is out there.

This forum has been amazing in the way it has helped me.

Markl60 profile image
Markl60

I do hope this is an open door invite and not simply a collection of those stories that fit the established agenda. It is clear on here that there are plenty of thinking individuals capable of questioning the accepted paradigms and I hope they are invited to share their views/stories warts and all otherwsise we will end up with a very biased set of stories

TSPiggy98 profile image
TSPiggy98

In 2011 I suddenly developed palpitations, dizziness and fatigue. I was 47 and scared to death. I started having panic attacks and crippling health anxiety. When I developed chest pain and difficulty breathing one morning I went to the ER, certain that I was dying of a heart attack. Every test they ran showed all to be perfectly normal. I was sent home with a diagnosis of anxiety disorder and a prescription for Ativan, which I never filled.

In the next 18 months I developed other disturbing symptoms: balance issues, tingling in the hands and feet, constant upper abdominal pains, crippling fatigue. The anxiety worsened and I started losing weight rapidly. Three different doctors gave three different diagnoses. My gynecologist said it sounded like "bad menopause" and recommended black cohosh. I refused to take it after research showed it was linked to liver damage. My primary doctor said it was IBS due to stress and prescribed Xanax and Lexapro. I had such a bad reaction to the first dose of Lexapro that I refused to touch it again. The Xanax remained unused in a desk drawer. A third doctor said it was anxiety and suggested meditation.

When the abdominal pains intensified I started calling gastroenterologists. By now I was convinced that the weight loss and other symptoms were indicative of pancreatic cancer. My grandmother died of the disease 30 days after diagnosis 40 years ago at age 84, the only incidence of cancer on either side of my family. I was terrified. The earliest appointment I could get was in two weeks.

Two weeks later I saw the doctor, who ordered an abdominal CT scan. All appeared normal. Blood work also appeared normal. He ordered an endoscopy. Bingo...the lab results of the biopsies taken during the procedure confirmed celiac disease. There is no cure, and the only treatment is a strictly gluten-free diet.

I was relieved at first; my condition finally had a name and I could begin treating it. But when I went home to research the disease I came away terrified again. All of the medical websites offered worst-case scenarios of intestinal lymphoma, heart disease and other autoimmune diseases. A gluten-free diet was not going to be as easy as the doctor made it out to be. I was overwhelmed by the hoops I had to jump through to ensure my food was safe. My family went gluten-free at home in support so that I wouldn't have to cook separate meals for them and me.

With the help of a wonderful nutritionist, whose brother is also celiac, I slowly learned how to adapt to the gluten-free diet. My symptoms all resolved within six weeks of eliminating gluten. I gained all the weight back within nine months. My energy returned and I was able to resume my cardio workouts with no problems. The anxiety took a lot longer to resolve; I began practicing yoga every morning to help combat it. It took two years for the anxiety to completely abate. Now I know that if my anxiety is particularly high I was probably accidentally glutened.

The fifth anniversary of my diagnosis and being gluten-free will be in October 2017. According to my GI my risk of developing another AI disease is now the same as that of the general population. I feel physically healthy (my depression is another matter). Celiac disease is now simply part of who I am.

John352 profile image
John352

hi there,

My story seems to be just beginning - although it is, I hope, not original, who knows where it will go?

I was born with mild cp, and at 61 I was happy to believe all who told me that cp doesn't worsen with age. Three years ago, I found a deterioration in my condition - I stopped my work (in the City) and I now live on ESA (support group) and PIP.

I now move very slowly, and I have little idea if the effects of my condition will get worse, or stabilise or if I can do anything. It seems that few people are interested in doing research for 'old' people with cp - the common attitude seems to be 'just be grateful that you have had it mild so far'. And 'all cp id unique, so we only give general solutions. Keep on exercising within your limits'. I have been to a London specialist centre, and staff there have said 'the NHS is better at crisis situations - unfortunately cp is a chronic condition'.

Somebody on the internet referred me to this site - it seems to be useful and the community seems to be positive and helpful.

lcd8 profile image
lcd8

Hi. I have a condition called Arteriovenous Malformation (or AVM). This is a congenital but abnormal tangle of blood vessels in my brain. I was born with the condition but it didn't make itself known until I was 12( 1987) when I started getting extremely painful migraine-like headaches. My GP was at a complete loss and I was put on lots of different tablets, none of which worked. At 14 I was finally sent for a CT scan which showed I had Hydrocephalus. The pressure of CSF on my brain had been causing the headaches. Fast forward 15 years and an MRI scan showed the reason my CSF cannot drain naturally is that a large AVM obstructs its path. So in fact I have both conditions. Although I suffer fatigue, memory and balance problems I feel extremely fortunate as my deficits could be an awful lot worse.

saifomar profile image
saifomar

Almost every person I have met so far would rather choose one side or the other. Example it's either the Big Pharma or Holistic Natural Remedies. Since getting diagnosed with CKD back in 2015 I have been maintaining my High Blood Pressure and CKD by combining the Best of Both Worlds.

I am under medication (Medical Science) and also controlling my condition with an All Natural Diet (Nature). I take pills but not too many and I eat a very balanced diet. Again neither I am a MEAT EATER nor a full VEGAN. I eat both but in moderation. I completely avoid processed foods. Also avoid alcohol, tobacco and artificial drinks (including modified water). I have cut off dairy 100%. I have increased my white rice and noodles intake.

Water is the only thing I drink of plenty with occasional berries only smoothie (without sugar). I have no sugar at all in my diet list. I get my glucose from fruits. But all of this would all go to waste and my health would deteriorate rapidly if I do not maintain my weight! I try to do brisk walking and some driving every single day. I stay away from strenuous exercise regime.

Lastly, the most important factor that keeps me going - I think positive all the time. I do not let small things stress me out and I always try to tell my mind that I am happy!

impomia2003 profile image
impomia2003

Indeed the struggle of a man begins at birth and it continues throughout his life. The agony of watching a mother shedding tears over her eight months old baby who has been infected with viral hepatitis B and had developed ascites made me feel like we are not doing enough to save our babies.

I was introduced to a client (a young lady, of about 23 years) who needed counseling on viral hepatitis infection. It was during that period that I learnt several members in her family have viral hepatitis B. I had the privilege of meeting a couple of them at work and educated them on the need to see a physician for proper treatment and management approaches, which they welcomed with joy.

Several years down the line, I was informed that my client was pregnant and we had to make arrangements for Immunoglobulins for the baby.

During my visit, my attention was drawn to an unforgettable situation; her elder sister (also positive for hepatitis B) has had a beautiful baby girl who was eight months old. Unfortunately, the baby was never given the birth dose of the immunoglobulin and the regular pediatric vaccine and had she had been infected and had developed ascites with jaundice. Clearly, you could tell from her condition that all was not well because her situation had deteriorated.

The baby had been on admission in one of the nation's teaching hospital and I was informed by the mother they did not see any improvements, so she decided to bring her home.

Her situation was terrible. I just couldn't help myself but shed tears. With remorse, the mother said; "All we can do now is just wait for my baby to die.. " She blamed herself for putting the baby in that situation. And as fate will has it, the baby passed away after some few weeks.

Mother-to-child transmission of viral hepatitis is a huge burden in our parts of the world. Unfortunately, much measures are not being taken to address this. We are the ones to make this world a better place for our children and we have to begin by protecting our babies.

We cannot just do things anyhow. Without an active, comprehensive national policies and strategies, we will miss out on our global target on ELIMINATION. The time to act is now!

Motherfather profile image
Motherfather

well i make my own rosemary oil its very easy to make as i have lots of rosemary bushes i mix it with lavender oil that i make my self as well,its quite simple, use olive oil as the base oil go into google it will tell u how to make it very simple to make,i use it on all my body face as well i sniff it in and rub in in as well.my skin is very good now.i also use apple cider vinegar a spoon full in a glass of water first thing in the morning good for skin as well.

4fishylady profile image
4fishylady

Just a warning - I have been taking a multi-vitamin along with my Rx's and other supplement of magnesium, calcium, Vitamin C etc. I was thinking that whatever I might be missing would be taken care of with that. My latest test done by my Neurologist said that my Vitamin B-6 level was elevated, and that it can cause NERVE damage! Already having neuropathy in my feet and legs, that was scary! I have since stopped taking that multi-vitamin, as it had 100% of the B-6 needed in a day, and when I added Special K to that - I got 200%. Add to that a nice healthy high protein diet, and you get way over the top of B-6! All of my protein sources were loaded with B-6. I now eat my old fashioned oatmeal with raisins, nuts and orange marmalade for breakfast to try and eliminate the overload. Know what you are taking, and be certain there is nothing that could make you worse!

Manditts profile image
Manditts

What an amazing story,you serve as an inspiration to all of us.The loving and selfless devotion to you're wife is a wonderful testament to you.A true gentleman. Manditts..

klr31 profile image
klr31

I have M.E and Hashimoto's and wish that this site had existed when I first became ill 21 years ago. It would have made my life so much easier as it took me many years to learn about my conditions and do what was best for myself. Having others to ask and find support from is invaluable. I lost my mum three years ago tomorrow and so the Bereavement site has been such a comfort, as well as the Care community as my father is now in a nursing home with dementia. Health Unlocked is a wonderful place to come to, learn and share.

Karen

alangardner profile image
alangardner

approx 4 yrs ago my lady [ of 30+ yrs together ] , was - after several stints in hospital - diagnosed with a severe thyroid problem [ tsh over 130 alone ] . our gp -who is absolutely superb - fully admitted that he knew only the basics of the condition and would have to be guided by the hospital ''specialists '' . at this time we knew absolutely nothing about the subject , however through a friends family i was directed to your site and then on to ''thyroid uk '' and with their help ,knowledge , advice & empathy we have now got it under reasonable control , although it is a lifetime condition , i suggested to our gp [ who is a teaching doctor and surgeon ] to try the site , he did and through it he found many direct forms of knowledge - publications , accredited specialists , personal accounts etc - he has now add a specific part of his teaching syllabus directly to thyroid conditions,diagnosis & treatment[s] . along the way my lady was diagnosed with thyroid eye disease and has been also having ongoing treatment as well . it may have taken 4 yrs ,but, with the superb help from this site - and particularly thyroid uk - she has gone from a severe health problem , that we knew damn all about , [ taking 44 tablets a day ] to 5 a day , along the way it has been a journey but with the knowledge now that we can control it with the help from tuk's forum we are now out of that damn great tunnel and in relative sunshine . i cannot thank the forum and the people enough and have and i will continue to support and recommend tuk particularly through this site to anybody that has any health problem whatsoever .

jaykay777 profile image
jaykay777

lonestray --I'm glad you have been able to find and make a life for yourself. My mother and my husband had Alzheimer's. I was 86 in April of this year. I send you birthday greetings in advance.

lonestray profile image
lonestray in reply to jaykay777

Thanks jaykay: I've not posted in a while as I'm very busy with the daily chores: cooking, housework, washing, ironing, the weekly shopping and of course writing my life story. Maybe it's time I downsized once again as this four bedroom house is too much for one person. Living alone is no problem even though I neither see or speak to anyone most days. Thank God for my wonderful daughter that visits a few days a week. Seven years have passed since my 'Total Gastrectomy' and I'm pleased to say I'm doing fine most of the time. With regards regaining weight my progress is very slow. It may be due to the fact I continue my early morning run (05.00- 0530) five days a week. It has taken me a long time to find foods to suit my needs. A little and often still applies and I enjoy my food. The future is looking good as I look forward to my youngest Grand daughter's wedding on the 7th Oct. I'll be 86 on the 8th. When my wife and I were married I never knew her birthday was the 7th Oct and she was three years younger than I. The first time I required my date of birth was when I applied to join the forces and required a birth certificate. Being raised as an orphan (for my own good) has taught me to be independent: to learn and live life my way. I'm still learning how wonderful life can be. This past year I've managed to recover from double vision, a Telescopic removal of the obstructing, to the central part of the prostate. Now I'm diagnosed with skin cancer and await an appointment for treatment. For me there is so very much to learn along life's road. The brain is the control centre for the body and all information enters through the five senses. That approach helped considerably whilst I cared for my beloved wife. Often the senses are attacked by people or companies with vested interests. An unconventional upbringing has lead to an unconventional approach to life.

cook4650 profile image
cook4650

Couldn't find an appropriate space to post this, so hopefully my question will get the attention of an admin, or someone who can direct me. I'm looking for a page on Health Unlocked that deals with vertigo. I am already a "member" of another page, but would like to enter one for folks who suffer vertigo. Can someone please tell me how to go about this? I've poked around the site and not finding exactly how to do that. I do not want to start a NEW page. Thanks...

TRISHLIN profile image
TRISHLIN

I have only been following this site for about a month now. But they have already helped me. Their advice gave me new ideas and I began trying new things like Culturelle for my health problem and this helped more than I could ever imagine. Not only that, but I heard from people who really cared about how I felt and encouraged me. I just cannot say enough good things about this site. I am already telling my friends about it also. I am in the U.S. and I get a kick out of the ladies who write from the U.K. as they have very different expressions for certain things. So, it is 'fun' for me to read their posts as well as try to help them if I can. Had never heard of it, don't remember where I got the info on it, but very very glad I did. So thanks for 'being' there' for all of us. So happy and blessed by all these posts and the sharing that is constantly going on.

52mags profile image
52mags

Hi mat2584 I as use coconut oil my salf every day love the stuff 5 years ago went for.botox on my bladder went home with cellulitis -staphylococcus-and pseudomonas- this made me very sick to the point that I feared for my life it's a long story but now I feel like i am permanently on antibiotics as far as the pseudomonas is concerned I take( turmeric milk honey and coconut oil ) everyday if I don't the skin in my mouth starts to break up and get bad earache not sure if it helps my memory but it's worth a try good luck

teessidesitp profile image
teessidesitp

I came to this site to try to get a feel for the experiences of people who had spent some time on statins. I am about to start taking them and I wanted to see if there were some hints and tips from those who had spent years being helped by them. What I found was frankly frightening. There seems to be a complete lack of trust in the medicines that are keeping us alive and the people and organisations that produce them for us. There seems to be a total ignoraqnce of the methods used to produce medicine and to formulate treatments. The most foul conspiracy theories that rely on thousands of Scientists, Doctors and Nurses being murderers, poisoners and torturers are all taken seemingly at face value?

The most bizarre treatments from the wacky world of alternatives are recommended to each other with copious anecdotes and infeasible miraculous cure stories abound. The comments on this thread alone scare me to death. Every crazy withcraft remedy is recommended with confidence. What is happening to people? Does nobody realise that no previous generation has lived as long as we have. When I was young, cancer was a certain death sentence. Diseases such as polio, measles, tetanus, diptheria and countless others were killing children in their thousands. I can still remember many people with leg supports after having polio. Not any more. People in this thread are calling the vaccines responsible for ending these diseases into question?! What? It is now on average a 50% chance of remission from most cancers for 5 years! A child with Leukemia died 97% of the time. No more! This is a medical miracle brought about by science, not homeopathy or some other impossible fantasy! This site is a quagmire of paranoia and quackery and it is unhealthy to visit it if you are ill. I am going back to NHS Choices and sanity. Somebody should be taking responsibility for what is being spread on this site without response. Disgraceful!

jillygirl profile image
jillygirl

5th April 2012 it was my birthday , I was 63yrs old. The week before I got a terrible chest infection, which made me feel so horrid I didnt even want a cigarette. So there and then I joined

The Roy castle Quit support site and stopped smoking.

Dont get me wrong, as a true smoker does, I did persevere and try a couple , but didnt enjoy them. So that was the beginning of a very hard and gruelling next few months.

I went to see my doctor , with what I thought was arthritus pains in my legs. He refered me to the hospital. After being examined for about 2 hours from head to foot, I did think

it was a bit strange for pains in my legs. So I had an x ray of my chest before they let me go home. They said thay would send another appointment through the post.

Oh boy! 2 days later I received a letter saying go for a ct scan the following day. due to an abnormality on the x ray.

That was it I was taken into a room where an image of my lungs was on the screen. I knew deep down what was going to be said. The doctor explained I had a tumour on my lung, he was 99% certain it was a cancer. He did try and reassure me that it was contained and should be able to be removed.

After that day my world, and my familys was turned upside down.

Everyday after that seemed to mingle in together. I had numerous x rays , pet scans , and ct scans.

Then one appointment was with the consultant, he explained in full what I had. Yes I had 2 primary tumours. 1 on my windpipe which was pressing on to my main artery to my brain.

He reffered me for an exploratory operation to see how bad this was. As they couldnt operate if it was too dangerous. Then it would have been pallative care. (end of the road).

I had a 3 hour operation. When I came to, the surgeon said he had managed to seperate the cancer from the windpipe and artery, so the big operation could now go ahead.

I then had my whole right lung removed 3 weeks later. I was taken into a high dependency ward for 3 days. I dont remember much as I was in morphine city then.

On my 7th day I was discharged from hospital to go home. Very hard work, and I must admit I had quite a few panic attacks. with breathing and going upstairs.

Eventually I was feeling a lot better and just getting my strength back , when I got an infection where I had had a chest drain. So antibiotics which upset me, nurses to put dressings on.

After 2 weeks I had to go see the consultant again, regarding chemotherapy. She looked at my infection and doubled the antibiotics which made me feel even worse. Told me to come back in 2 weeks to see if I wanted to go ahead with the chemotherapy.

After talking it over, I decided to give chemotherapy a go, It was offered to me as an extra safeguard in case there were any undetectable cancer cells. They told me 1 in 20 people benefit. But it wasnt guaranteed plus there were a lot of risks too.

I went for the chemotherapy, I had 8 hours of it on the first day. I thought it wasnt too bad. Next morning I felt very sickly and had nausea. I got tinnitus in my ears, I couldnt stand any form of food . No I thought I will keep on taking the anti sickness tablets, and I would be ok. I stuck this out for 6 days , but by the Monday when I was due to have a pre-assesment for the next days chemotherapy, I virtually crawled into the hospital and collapsed.

I was on fluids all day via a drip. They eventually sent me home, but wanted to check on me the next morning. Next morning I got out of bed felt sickly again then collapsed back on the bed I just could not stand up.

Back to the hospital. This time they kept me in. I was put on fluids anti-sickness drugs and monitored for 5 days. The consultant came to see me and said NO MORE CHEMOTHERAPY for you. It is far too dangerous for your body.

The way I felt I could have kissed her.

The consultant has been really good , and has checked me for anemia, calcium, given me steroids to get my strength back. They are checking on me every 3 months, for the first year then it will be 6 monthly , then yearly.

I know all of this story may seem boring to you, but if you are trying to stop smoking , may be , just may be , reading what I have been through and being lucky enough to survive, it may encourage you to think is it really worth smoking.

1 Year later I still felt short of breath, then one day I got out of breath and it got worse. I was panicking , I just felt as if I couldn’t breath at all. My husband dialled 999 and I was rushed to a&e. The Doctor there told me I had just had a heart attack, totally unexpected. I didn’t need any stents or further treatment I had an angiogram which showed everything was fine.

I was sent home but unfortunately I had caught pneumonia whilst in hospital. So back again for

treatment.

All was going well 1 year after the heart attack. I still felt out of breath but the cardiologist said all was fine. I had a routine blood test at my g.ps surgery. My doctor then called me in again.

Not sure exactly what was wrong , but he wanted me to go for a c.t. scan.

The results showed a shadow around the left kidney. To cut yet another long story short, They found a tumour on my adrenal gland. Luckily there was a surgeon in the hospital who could do the operation, apparently this is one of the rare cancers. I recovered really well from the operation. I had adjuvant chemotherapy which this time I tolerated , although I had plenty of side effects.

It is now one and a half years since my last operation.

I stll feel I get short of breath, so once again I went to my G.P. The doctor took my blod not clever smokingpressure and pulse. Next thing I was being rushed into A&E again apparently my pulse rate was too low. My pulse rate went down to 1 (missed 1 beat) they took a beta blocker off me which seemed to improve. I felt my breathing was improving. I had a monitor to wear at home for 24 hours.

This showed my heart rate was going far too low mainly on an evening. 4secs and very frequent. So my next hospital stay is for a pacemaker.

Like I said before its not clever smoking.

jillygirl profile image
jillygirl

This was a post I put on quit support to encourage members to quit smoking.

5th April 2012 it was my birthday , I was 63yrs old. The week before I got a terrible chest infection, which made me feel so horrid I didnt even want a cigarette.

Dont get me wrong, as a true smoker does, I did persevere and try a couple , but didnt enjoy them. So that was the beginning of a very hard and gruelling next few months.

I went to see my doctor , with what I thought was arthritis pains in my legs. He referred me to the hospital. After being examined for about 2 hours from head to foot, I did think

it was a bit strange for pains in my legs. So I had an x ray of my chest before they let me go home. They said thay would send another appointment through the post.

Oh boy! 2 days later I received a letter saying go for a ct scan the following day. due to an abnormality on the x ray.

That was it I was taken into a room where an image of my lungs was on the screen. I knew deep down what was going to be said. The doctor explained I had a tumour on my lung, he was 99% certain it was a cancer. He did try and reassure me that it was contained and should be able to be removed.

After that day my world, and my familys was turned upside down.

Everyday after that seemed to mingle in together. I had numerous x rays , pet scans , and ct scans.

Then one appointment was with the consultant, he explained in full what I had. Yes I had 2 primary tumours. 1 on my windpipe which was pressing on to my main artery to my brain.

He refrred me for an exploratory operation to see how bad this was. As they couldnt operate if it was too dangerous. Then it would have been pallative care. (end of the road).

I had a 3 hour operation. When I came to, the surgeon said he had managed to separate the cancer from the windpipe and artery, so the big operation could now go ahead.

I then had my whole right lung removed 3 weeks later. I was taken into a high dependency ward for 3 days. I dont remember much as I was in morphine city then.

On my 7th day I was discharged from hospital to go home. Very hard work, and I must admit I had quite a few panic attacks. with breathing and going upstairs.

Eventually I was feeling a lot better and just getting my strength back , when I got an infection where I had had a chest drain. So antibiotics which upset me, nurses to put dressings on.

After 2 weeks I had to go see the consultant again, regarding chemotherapy. She looked at my infection and doubled the antibiotics which made me feel even worse. Told me to come back in 2 weeks to see if I wanted to go ahead with the chemotherapy.

After talking it over, I decided to give chemotherapy a go, It was offered to me as an extra safeguard in case there were any undetectable cancer cells. They told me 1 in 20 people benefit. But it wasn`t guaranteed plus there were a lot of risks too.

I went for the chemotherapy, I had 8 hours of it on the first day. I thought it wasnt too bad. Next morning I felt very sickly and had nausea. I got tinnitus in my ears, I couldnt stand any form of food . No I thought I will keep on taking the anti sickness tablets, and I would be ok. I stuck this out for 6 days , but by the Monday when I was due to have a pre-assessment for the next days chemotherapy, I virtually crawled into the hospital and collapsed.

I was on fluids all day via a drip. They eventually sent me home, but wanted to check on me the next morning. Next morning I got out of bed felt sickly again then collapsed back on the bed I just could not stand up.

Back to the hospital. This time they kept me in. I was put on fluids anti-sickness drugs and monitored for 5 days. The consultant came to see me and said NO MORE CHEMOTHERAPY for you. It is far too dangerous for your body.

The way I felt I could have kissed her.

The consultant has been really good , and has checked me for anemia, calcium, given me steroids to get my strength back. They are checking on me every 3 months, for the first year then it will be 6 monthly , then yearly.

I know all of this story may seem boring to you, but if you are trying to stop smoking , may be , just may be , reading what I have been through and being lucky enough to survive, it may encourage you to think IS IT REALLY WORTH SMOKING?

Without quit support and all its members I don`t think I could have kept going. The love and care you all sent was unbelievable. THANK YOU you are all angels.

THINK when the cravings start, is it worth it. I know my answer. I am sure your brain knows the answer too.

BarrySimpson profile image
BarrySimpson

Thank you so much for your web site. Being able to share experiences feely has been such a big help in reducing the burden and feeling of isolation of my condition.

An accident in 2013 left me with a spinal injury and paralysis from the chest down. Spasticity and double incontinence are further consequences. All these have been severe blows to my lifestyle, mood and self-esteem.

Such injuries are not compatible with privacy. Before my accident I worked occasionally as an artists' life (nude) model. Loss of privacy was not as embarrassing as it might have been. Even so I do sometimes feel ashamed by my incontinence. Nurses give me a bowel evacuation on alternate days. I do feel guilt for imposing this on them. Even worse, two of the nurses sometimes leave without having completed the job thoroughly: there is faecal leakage for the carers to clean. Emptying my leg bag is not a task I like to impose on carers or anyone else.

I do not feel embarrassed by being naked but I am concerned that some of the carers are. Some younger carers in particular and those from different cultural heritages stand frozen or leave the room to make breakfast as another carer gives me a strip wash.

I am unsure what those who do not show clear signs of embarrassment are thinking as they attend to me. Some just get on with the job to finish as soon as they can. A few do appear to enjoy what they do.

I am not embarrassed by erections. I do not get them easily, probably more because of my spinal injury than my incontinence. They are important not only for a feeling of well-being and in relationships but also in maintaining hygiene.

Carers help me to get out of bed. This includes a strip wash. When washing a penis it is important to clean under the base of the glans, a much easier task when it is erect.

I sleep wearing an incontinence pad held in place with unisex fixation knickers - like women's full-sided briefs without a gusset. While waiting for my carers, each morning I slip them down and make my penis as ready for washing as I can. I keep my foreskin back permanently. A few of the carers will squeeze my testicles as they wash my scrotum and pull back my foreskin as far as it will go so that they can wash my glans thoroughly. 'And how are you today darling?' said one as she arrived. I am not sure whether she meant my well-being in general or how many inches, but I took it to be the former.

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