Tired all the time? How about a few lifestyle changes to raise your energy levels?

Fatigue and rest

Fatigue and rest


As we all know fatigue is a by-product not just of medical conditions (fibromyalgia and multiple sclerosis come to mind) but can also be caused by the pressures of modern life.

Previously we have looked at natural treatments for fatigue (https://patienttalk.org/?p=614) so today we would like to focus on lifestyle changes that might boost your energy levels.

a)      Drink less!  Or even cut alcohol completely from your daily or weekly routine.  While a glass of wine may relax you it also takes a lot out of your body. Thus making you tired and sluggish in the morning.  Or try just a few alcohol free days a week.

b)      Give red meat the boot.  Lots of people have found that moving to a vegetarian or semi-vegetarian diet boosts their energy levels.

c)       Counselling.  There is some evidence that people who have under gone counselling often find themselves refreshed in body as well as mind.

d)      A big breakfast.  Regular and healthy snacks are better than one big blow out each day.  And do remember that old proverb “Breakfast like a king, lunch like a prince, and dine like a pauper”. In fact it is good for weight loss as well so do consider.

e)      Drink more water.  For other health benefits of drinking more water check out our previous blog https://patienttalk.org/?p=320.

f)       Exercise. Even a few minutes of exercise can boot your energy levels, raise your endorphins and therefore your sense of wellbeing.

And finally of course the one main lifestyle change!  Get a good night’s sleep.  Lots of us don’t get enough sleep so why not go to bed an hour earlier?

Do you have any tips for fighting fatigue?   Please use the comments box below to make any suggestions that you think might be of help to your fellow readers.

Autoimmunity! What actually is an autoimmune medical condition? Updated with reader comments

Autoimmune disease awareness

Autoimmune disease awareness

On PatientTalk.Org we run an occasional series of blogs which try to bust the jargon used in the healthcare and medical industries.  In today’s blog we are turning our attention to autoimmune conditions.

Autoimmune conditions are, to say the least, very unpleasant.  Importantly they do not just appear in humans but in fact, in most organisms.  Simply put autoimmune conditions are when the body fails to recognise one of its constituent organs as part of itself.  This leads the immune system to, in effect; attack its own body or part of the body.  This will often “present” as inflammation.

There are two main types of autoimmune disease:-

a)      Systemic.  This is where the sufferer’s immune system attacks the whole body.  Lupus can be an example of this. To find out more about Lupus please see our awareness blog https://patienttalk.org/?p=270.

b)      Localised. This is typically when an attack is made on a specific organ of the body.  In the case of Celiac disease (https://patienttalk.org/?p=349) which affects the gastrointestinal organs or tissue.

Typical symptoms and signs of an autoimmune disease can include:-

1)      Pain in either joints or muscles.

2)      Fatigue.

3)      Brain fog or cognitive impairment.

4)      Numbness in the body’s  extremities such as hands or feet.

5)      Reoccurring rashes or hives.

Obviously if you suffer from any of these symptoms it is vital you see a doctor as soon as you can.

Interestingly autoimmune conditions occur more often in women  than men.  Indeed it has been estimated at up to 50 million Americans suffer from one kind of autoimmune condition or another.

There is, as of yet, no full list of autoimmune conditions but certainly they run into hundreds. These include multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis), rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), psoriasis, Hashimoto’s thyroiditis, Graves’ disease, idiopathic thrombocytopenic purpura, and Addison’s disease.

Do you suffer from an autoimmune condition?  If so it would be great to hear your story!  You might want to consider some of the following questions:-

a)      What autoimmune condition have you been diagnosed with?

b)      What were your original symptoms?

c)       What treatments did you use?  E.g. Steroids.  How effective were these treatments?

d)      What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition?

Please feel free to tell your story in the comments box below.

Many thanks in advance.

 

NicoleGoulemas I have been diagnosed with rheumatoid arthritis. It started when i was 20. I just had a sore knee. Then 3 days later i had 2 sore knees. Went to the doctors and they gave me anti inflammatories. I went back a few weeks later with a sore jaw and he suspected arthritis so referred me to a specialist after doing a blood test which came back clear. The wait to see the specialist was around a year and in that year i went downhill fast. I lost my job because i took 3 days off in my probation period with a medical certificate. Their reason was i was unreliable. I spent most days in bed because i couldnt walk. Which took a toll on my relationship because i was unable to do household chores. My relationship ended and i moved back into my mums house where she became my full time carer. She prepared my meals and precut my meat (when i could eat it) by this stage (maybe 5 months) i had 2 sore knees, a sore ankle, a sore jaw that stopped me from eating and talking most of the time because i couldn’t open my mouth, a sore elbow and my hands had started to close up and i couldnt grip a knife or my hair brush. I had gone into a wheelchair coz it was too painful to walk and mum had to help me with personal care as well as cutting all my meals and having them prepared so all i had to do was reheat coz she still had to work. I got quite depressed as well. After my 21st i eventually got in to see the specialist who did more tests. It turned out i had seronegative rheumatoid arthritis. It didnt show up in a normal blood test so they did some other  blood tests and found it. My arthritis is worse in the warmer months so I’m a little back to front.

My gp had me on a mix of pain killers and anti inflammatories until i got into see the specialist. They then stopped the painkillers and started me on methotrexate and anti inflammatories with prednisolone. I was able to get out of the wheelchair and walk again and then my hands returned to normal. I still had pain and a lot of it. They then introduced another medication  (i cant remember what one now) and it didnt work so they put me on arava with the methotrexate. The arava gave me a bad allergic reaction and i was hospitalized for 5 days. After that i was on methotrexate and sulfasalazine for the next 5 or so years. After about 3 years i kept feeling very sick. I told my specialists (each year i got a new one) and they didnt really do much to help. I complained for 2 or more years about it until one listened and i got in to see a biologic rheumatologist. The biologic rheumatologist was also the dr who diagnosed me when i was 21. So it was nice to see a familiar face. I started taking humira that stopped working after a knee arthroscope. I then got put on enbrel that i was allergic to and now im on actemra infusions and they work. Ive been on them for about 2 years now. Through all that i have been on and off prednisolone as well. It was a very long and bumpy road to finding a treatment that worked. I am a new person now and i can even work again. Some days are hard to work as i work in retail which was probably not a smart choice haha. I still battle fatigue and brain fogginess especially after a long day at work and sometimes i have to just sit in the car because i hurt but it doesnt last long because my meds work so after a good nights sleep i am ok again the next day.

Advice i can give is never give up. It may be a long hard road to finding treatments that work but dont give up. The road will make u stronger and when u look back on where u have come from u will be proud of yourself. Every small victory gets u closer to the biggest victory, meds that work and a happier life. It may seem like there is no light at the end of the tunnel but it does come trust me. Its a hard depressing battle but when u can get back to work and have a better life it will have been worth the fight. And get a good support network. If anyone is negative get rid of them from your life for a while or permanently. Try to stay positive and go easy on yourself. If u need help ask for it. Dont feel bad if u cant get out of bed things will get better when u find the right treatment.

Mser1986 I can remember as far back as age thirteen or fourteen of having pain and weakness in my feet and legs. Sometimes I would cry from the pain. Playing volleyball was very hard on me but I loved the game. As I got older the pain and weakness got worse. My first hospital stay was when I was twenty two. I was there for about two weeks before the doctors decided that they didn’t know what was wrong with me. I was hospitalized a few more times before my doctors told me that I needed to see a psychiatrist that it was all in my head. My dad had to help me walk out of the hospital. Then an elderly neighbor told me about a MS specialist near my home to see. That was in 1987 the year I was diagnosed. When I finally found out what was wrong with me, I was relieved. I had a name for what was wrong with me.
My new normal has me taking life one day at a time. Pain, weakness and fatigue are a part of who I am. But it does not define who I am. When I’m tired I lay down. When I feel MStrong I babysit my one and two year old grandsons. They are a huge handful but I love it. I’m from a family of thirteen children. I have six children and ten grandchildren.
My advice would be this: take one day at a time, own your MS diagnosis, don’t let it own you. If you feel fatigued, then lay down and rest. YOU DONT OWE ANYONE AN EXPLANATION. Live life don’t wait till you feel better, that may never happen.
Sweett588 I was diagnosed with RRMS ( relapsing remitting multiple sclerosis ) in 2004. My neurologist now thinks it has progressed into Secondary progressive ms. I did not come out out my last relapse even after IV steroids ( solumedrol) and a month of prednisone.
My original beginning symptoms were difficult to diagnose. They were numbness in fingers/ toes. Tingles/ electrical like impulses in my lips especially, but throughout my body. Weird sleep paralysis. And MAJOR fatigue. I was initially told by my family doc I had anxiety and given anti anxiety meds!!! But I knew something was not right with my body. I got an MRI and it showed 5 lesions on my brain, although my spinal tap came back negative.
I had a 2 1/2 year old son , and we wanted 1 more child after I made sure it was safe. No one in my entire family either side has ever had MS. I had another child in 2006. Then I started Rebif. I immediately had an allergic reaction. Couldn’t breath! Switched to copaxone. I’ve been on copaxone ever since. I tried Tecfidera briefly after studying it during trials, but once it was clear it causes PML I went back to copaxone 3 x a week. I am JVC positive.
My one piece of advice would be to study each drug carefully. They all have terrible side effects! Pick what is right for you. Start ASAP. STAY ON IT. SEE NEUROLOGIST MONTHLY AND GET BLOODWORK REGULARLY! Eat well also!
t
RobynSmith1980 I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes.  I am the only one in my family that has been dx with MCTD so I don’t know where I got it from.  At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me.  I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about.

a)      What autoimmune condition have you been
diagnosed with?
Multiple Sclerosis
b)      What were your original symptoms?
The first
symptom I remember was my hands not working to fasten my oldest daughter’s
stroller strap. You remember, those that had the two circles? Was 34 yrs ago.
Then when I was pregnant with my second child (born in 1981) my legs kept going
paralyzed! Doctor kept saying it was because of the baby! But it continued
after his birth. Then when he was 5 months old (late 1981) my feet were going
numb but tingled up to the midcalf. Doctor finally said he wanted me to have
tests for M.D. Yes, he knew MY father had M.S. but remember that back then it
was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did
NOT get officially diagnosed till 1992 when I HAD to because I suddenly could
not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in
1982.
c)       What treatments did you use?
There
were times I used Steroids for some symptoms.  I tried Rebif.
How effective were these treatments?
Steroids, now I will not. They mess up
my eyes. Rebif I had terrible injection site reactions, got depressed, had the
flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided
taking a med that I had to take meds for the symptoms….not cool. I quit. Now I
take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and
a multivitamin. As long as I take them regularly, get enough sleep, avoid
stress when possible and don’t over due, no one can tell I have M.S. When I
last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First
time in 30 yrs I heard those words! I ALWAYS had active lesions!
d)      What one piece of advice would you give to
somebody who has just been diagnosed with an autoimmune condition?
Get doctors you trust, do your own research. DON’T STRESS!! And take care of
YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!

DaphneRoberts greetings everyone.  i have multiple sclerosis and have been dx since 2002.  it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave.  i had been trying to find out what was wrong with me since i was twelve.  i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years.  i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth.  they couldn’t find anything wrong so they said i was just a hypochondriac.  it wasn’t until my son was born that the scars actually showed up.  i take Copaxone, baclofin, and an anti-depressant for the attacks and pain.  i was taking steroids, but all of a sudden my body has had a very bad reaction to them.  if i could give any advice, it would to be your own advocate and be kind but be assertive.  it is after all your body and no one knows it, even the drs, like you do.  if no one listens or disregards you keep at it, keep reminding them, and keep telling them.  be persistent while being kind.  God bless you all  daphne roberts
RobynSmith1980 I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes.  I am the only one in my family that has been dx with MCTD so I don’t know where I got it from.  At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me.  I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about.

a)      What autoimmune condition have you been
diagnosed with?
Multiple Sclerosis
b)      What were your original symptoms?
The first
symptom I remember was my hands not working to fasten my oldest daughter’s
stroller strap. You remember, those that had the two circles? Was 34 yrs ago.
Then when I was pregnant with my second child (born in 1981) my legs kept going
paralyzed! Doctor kept saying it was because of the baby! But it continued
after his birth. Then when he was 5 months old (late 1981) my feet were going
numb but tingled up to the midcalf. Doctor finally said he wanted me to have
tests for M.D. Yes, he knew MY father had M.S. but remember that back then it
was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did
NOT get officially diagnosed till 1992 when I HAD to because I suddenly could
not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in
1982.
c)       What treatments did you use?
There
were times I used Steroids for some symptoms.  I tried Rebif.
How effective were these treatments?
Steroids, now I will not. They mess up
my eyes. Rebif I had terrible injection site reactions, got depressed, had the
flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided
taking a med that I had to take meds for the symptoms….not cool. I quit. Now I
take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and
a multivitamin. As long as I take them regularly, get enough sleep, avoid
stress when possible and don’t over due, no one can tell I have M.S. When I
last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First
time in 30 yrs I heard those words! I ALWAYS had active lesions!
d)      What one piece of advice would you give to
somebody who has just been diagnosed with an autoimmune condition?
Get doctors you trust, do your own research. DON’T STRESS!! And take care of
YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!

DaphneRoberts greetings everyone.  i have multiple sclerosis and have been dx since 2002.  it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave.  i had been trying to find out what was wrong with me since i was twelve.  i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years.  i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth.  they couldn’t find anything wrong so they said i was just a hypochondriac.  it wasn’t until my son was born that the scars actually showed up.  i take Copaxone, baclofin, and an anti-depressant for the attacks and pain.  i was taking steroids, but all of a sudden my body has had a very bad reaction to them.  if i could give any advice, it would to be your own advocate and be kind but be assertive.  it is after all your body and no one knows it, even the drs, like you do.  if no one listens or disregards you keep at it, keep reminding them, and keep telling them.  be persistent while being kind.  God bless you all  daphne roberts
ibumpn2thngz Do you suffer from an autoimmune condition?  If so it would be great to hear your story!  You might want to consider some of the following questions:-
a)      What autoimmune condition have you been diagnosed with? MS, February 14th 2000
b)      What were your original symptoms?l had many migrane headaches as a teenager, but the only thing that made me go see a doctor was the day I awoke, deaf in my right ear, change in sence of taste/smell and numbness that progrssively caused my to become imparied in my right leg (my driving was not possible because I could not judge where my feet where in relation to my body..I had to look at them to make them work or go in certain directions (very upsetting) but moreso with the numness of my “lady parts” being 18 years old I knew it was a problem!!  bY THE time it was suggestive of MS I had gone through several other diagnosises!! 1st was “too much ear wax” uh, nope I bought and used an earwax removal kit and not a thing came out-oops, then I paid to go see an ear nose and throat doctor due to my hearing loss and it was determined then that I had an Acuoustic Neuroma Brain tumor…Nope ultimately after MRI’s and an LP it was concluded definatively that it was MS…my life was over, well the hopeful part of being a successful woman, rather a single woman with 2 children she loves very much with no support rom thier father…shm…
c)       What treatments did you use?  E.g. Steroids.  How effective were these treatments? The one thing my PCP did, saved me and it saved me good!!!! by mouth steroids but in large doses..lt wasnt as quick as the solumedrol IV but pre-diagnosis and going through so much that wasn’t what it was, was really great!! However, though my hearing was a little bit improved and my arm and leg and foot were on there was for repair I didnt let it go becuase I had the 18 year old paranoid as crap thing…Though I HATE IT SO MUCH, I am glad I was able to be diagnosed within months versuses years!!
d)      What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? The one thing I would have done differently would not be so paranoid of a flare-up, worst thing ever and l know how bad they are and can be lve went through so many that l know now my risk of permanant disability in those areas is immenant (if that’s how you spell that). Anyhow I wasted SO MANY OF My GOOD DAYS BECAUSE I WAS AFRAID OF THE BAD DAYS….  ADVISE IS TO LIVE!
rohrback2 In reply to Karen Brown.Karen Brown You are the first person that I have ever spoke to that has both Lupus and MS. I was told that I had Lupus at age 30. The MS came many years later at 50. I tried many of the Lupus and MS drugs, Never had much luck. Doctor placed me on Rutuxan and it worked for 6 years. Then I lost the drug because I was in a drug trial. Have been without it for a year. Increased optic neuritsis and MS and Lupus flares. Now looking at trying to get into s stem cell program at Hopkins… Good Luck with your battle Karen Brown
Northwood101 In reply to JulieHolland.Julie! I have hypoglycemia and was just diagnosed with MS in September.
Karen Brown I have Systemic Lupus since age 19. Joint pain, pleurisy, pericarditis, pulmonary edema, mini-strokes, tremors, weakness. Naproxyn, Ibuprofen, steroids, aspirin therapy – many hospitalizations. Age 34 my legs went numb & I couldn’t walk. MRI didn’t show MS tho Dr suspected it. Recovered from that except some residual nerve damage infect. Was treated with steroids. Woke up one morning with numb right arm & lumbar puncture done. So in ’98 I was told I have MS. Steroids are typically the treatment for flares, whether Lupus or MS. I was on Copaxone 4 awhile. For years and years every new Dr I’d see, they questioned diagnosis. Yes u have it! No u don’t have it! One time I was put n hospital with apendicitis… Being prepared for surgery & then surgeon came n 2 room & said “It’s not apendicitis, it’s Lupus!” I know whether flare-ups are from MS or Lupus, treatment is generally the same… Steroids to clothe inflammation. I know stay out of the heat, rest more if I feel worse, try to avoid stress, & pace myself. I personally dislike meds due to side effects. Quit Copaxone & take Baclofen as needed, pain med as needed, & Adderol as needed. Taking Vita D3, B-12, folic acid, evening primrose oil. Fresh pineapple reduces inflammation. I have symptoms that now just are staying & slowly getting worse. Family members have auto-immune diseases…
ChipTori Munk I have Hashimoto’s Thyroiditis which occurred after a head trauma in 1995.  I had a goiter and had put on 30 lbs in less than a month.  My TSH was only slightly elevated but my antibodies were off the charts.  Then I was diagnosed with MS in 2012 after a neck injury.  I was just diagnosed with Fibromyalgia and possible Raynaud’s.  I was also told in 2010 that I have Hughes Syndrome (sticky blood syndrome).  Thyroid issues run in my family, but none of the others.  It’s been a few interesting years.
mandy1968 i had to have my thyroid removed because of hashimoto disease, i had a lump on my thyroid which tests indicated it was possibly cancerous, it was awful being told that and i just wanted it out of me, but after removal it was found to be hashimoto disease instead and i was told i would be more prone to other auto immune diseases, my husband also has progressive ms, i worry for my grown up children and my grandaughter incase autoimmune disease can be hereditory

What is Idiopathic Hypersomnolence / Hypersomnia? And who is Hypersomnolence Australia?

hypersomniaWelcome to our latest guest post of PatientTalk.Org.  Michelle Chadwick of Hypersomnolence Australia has graciously written a fascinating blog for us on Hypersomnolence.

Idiopathic Hypersomnia – IH (more commonly referred to as Idiopathic Hypersomnolence in Australia) is a rare neurological sleep disorder characterised by excessive sleepiness. Despite sleeping in excess of 10 hours a night people with IH still wake up (either in the morning or at the end of nap periods during the day) unrefreshed and usually also suffer sleep inertia or sleep drunkenness (significant difficulty in coming to complete wakefulness accompanied by confusion, disorientation, poor motor coordination, blurred vision, difficulty expressing & understanding verbal communication, slowness, and repeated returns to sleep) that can often last all day (sometimes referred to as “brain fog”). People with IH can sleep through several alarm clocks and even physical attempts by friends/family to wake them may fail.  Daytime naps are generally very long and are also unrefreshing, as opposed to the short refreshing naps associated with narcolepsy.

Idiopathic Hypersomnia

People with IH experience these symptoms continually for years. Idiopathic hypersomnolence is a lifelong disorder; symptoms typically begin in adolescence or young adulthood and tend to get progressively worse with age. Idiopathic hypersomnolence is often debilitating as the impaired cognitive ability* and continuous feeling of sedation profoundly affects work, education, and quality of life and leaves sufferers at risk of potentially life-threatening domestic, work-related and driving accidents. In addition, some patients exhibit hypersensitivity to sedating medications such as anesthetics, sleeping pills, or alcohol.

Although the sleepiness does tend to worsen and your ability to be able to continue to fight it is tested over time the biggest problem for people with IH as they get older is the loss of their cognitive ability. Where once we may have been professionals, business owners or multitasking working parents we reach a point where all the positive attitude, all the willpower and sheer determination in the world will not make any difference if you simply *cannot* remember how to do the job you have spent most of your adult life doing or you simply *cannot* be trusted to carry out the duties you may have spent years training others to do. The loss of our communication skills can be the hardest blow as it isolates us from the only world we have ever known as we can no longer keep up. Our physical appearance suffers as the struggle to stay awake overtakes simple things like personal grooming, shopping for clothes and even trips to the hairdresser. This of course further isolates us as we become ashamed of whom we have become. Our self esteem plummets and we become at risk of suffering associated depression.

There are no approved treatments in Australia for IH. Doctors prescribe us the only two medications approved for narcolepsy (Dexamphetamine or Modafinil). Unfortunately these medications tend to be less effective for IH than they are for narcolepsy. A prefect analogy regarding these medications is a quote from Dr Jenkins from Emory University. Using stimulants & wake promoting medications “is like flooring the gas pedal in a car with the park brake engaged.” The theory being we need medications that “release the park brake”.

Hypersomnolence Australia (HSA) was set up purely out of necessity. While there are some organisations around the world that advocate for narcolepsy there was nothing that catered to IH. In Australia in particular awareness of IH was almost nonexistent and there was nothing being done to change this. HSA is dedicated to being a strong advocacy, raising awareness & educating others about IH and aims to support all people with IH and to people with Narcolepsy who identify more closely with the type of hypersomnolence experienced in people with IH (ie: no refreshing naps, long sleep times, normal overnight sleep structure etc).

*cognition is a group of mental processes that include attention, memory, producing and understanding language, learning, reasoning, problem solving and decision making.

The term idiopathic Hypersomnolence means:

Idiopathic – ‘of unknown cause’,

Hypersomnolence/Hypersomnia – an extreme or excessive level of sleepiness.

https://www.youtube.com/watch?v=V9gnvWtta4M

The above link is to a video made by Emory University in the States. Emory have made some promising discoveries about IH and have found a novel treatment option in the drug Flumazenil, as discussed in this video. Flumazenil is not approved for use in IH anywhere in the world. Although we can access Flumazenil “off label” in Australia the cost and the issues associated with the current delivery methods mean that it is out of reach for the majority of people with IH & Narcolepsy (there are only two people trying Flumazenil in Australia at present). It should also be noted that the GABA sensitivity identified by Emory is only likely to be the cause for approx 50% of the people diagnosed with IH & Narcolepsy without Cataplexy.

For more information please refer to these links:
http://www.hypersomnolenceaustralia.com/
http://en.wikipedia.org/wiki/Idiopathic_hypersomnia
http://hypersomniafoundation.org/about-hypersomnia

Brain fog – does anyone care? A discussion blog! Updated with new comments

Brain fog

Brain fog

As regular readers of this blog know for many years I worked in the area of healthcare and medical market research.  For many conditions such as Multiple Sclerosis, Rheumatoid Arthritis and Fibromyalgia patients often reported what may refer to as “brain fog”.

However this symptom, according to my research participants, was ignored or unmentioned by the medical profession.  The purpose of this discussion blog is to allow our readers to share in more detail their experiences of brain fog and its impact on their lives and their loved ones.

So what actually is brain fog?

There seems to be no clear clinical definition but a good description might be clouding of consciousness.  A term which was originated in the nineteenth century to describe low level cognitive impairment in different kinds of patients.

Typical symptoms of brain fog include:-

a)      Poor memory function.

b)      Difficulty in concentrating.

c)       Problems with learning new things.

d)      Inability to find/remember the word you are “looking for”.

You may wish to consider answering the following questions?

1)      What are the main symptoms of your brain fog?

2)      What do you think is the underlying cause of your brain fog?

3)      Please can you describe the impact of brain fog upon your lifestyle?

4)      How do you deal with brain fog?  What if any treatments do you use?  Have they had any success?

5)      Can you suggest any useful online resources for people with brain fog?

6)      Why do you think little attention is paid to brain fog by healthcare professionals?  If, on the other hand you feel that it is well covered by your medical support please tell us a bit more.

Thanks very much in advance for all your help with this discussion blog.

Here are just a few of the responses!

“1)     What are the main symptoms of your brain fog?  I can be in the middle of speaking and stop mid sentence and forget what I am talking about.  Often.  I have problems word finding.  I cant remember simple things.  I cant remember any names whatsoever. even if i have known someone for 20 years.  I cant problem solve as well as I used too.  I have a bit of delay when people say things to me often.  Sometimes I remember a random childhood event out of nowhere. I try to write it down because im so afraid i wont think of it again and that i will loose memory. I can not recall things. That is one of the hardest things for me to do is recall things. Whether it be a date, number, person, event. Anything. It is awful. I hate it.
2)      What do you think is the underlying cause of your brain fog?  Fibromyalgia.  and ptsd
3)      Please can you describe the impact of brain fog upon your lifestyle?  It is horrible. It has gotten worse this past year and truly affects me daily.  I struggle to do things at work that I used to do with ease.  I feel way to young to have these issues.
4)      How do you deal with brain fog?  What if any treatments do you use?  Have they had any success? I write EVERYTHING. I write every single thing i can down. i have so many notebooks.  I do not have any other treatments really other then trying to reduce stress which is an ongoing task.
5)      Can you suggest any useful online resources for people with brain fog? no but it would be nice to find something.
6)      Why do you think little attention is paid to brain fog by healthcare professionals?  If, on the other hand you feel that it is well covered by your medical support please tell us a bit more.

I feel that brain fog is often ignored by health care professionals for a few reasons.  Personally, I feel that they just dont believe me.  I am only 24 and try to tell them how bad it is.  I feel like it hasnt been taken seriously for a long time.  Many misdiagnose it seems.  Yes Depression is a nasty thing and causes similar symptoms, but this is different.”

“As the mother of a formerly bulimic daughter (7th-10th grade, now a mom herself). I can assure you that if you also tell your parents everything they will take you seriously. My daughter was taking diet supplements and I know that she was purging but for the life of me could not get her to stop. She denied it and denied it until she began having health problems. She has a twin sister and I do not know if I would have ever learned about this had her twin sister not told me. The advice the other lady gave you is only partially correct. If you are doing something to harm your self the doctor is obligated to discuss this with your parents. Would you not rather this information come from yourself? And this is only true if you are below the age of 17 and from what I understand you should be. Your parents are not listening to you because all they are seeing is that your your grades have dropped and the fact that you were previously a straight a student SHOULD tell them something is wrong. However parents are not perfect and sometimes they get wrapped up in their own lives and preferred to push an issue under the rod until it is staring them right in the face.
Trust your parents sweetheart. They love you and only want what’s best for you even if they have been blind to the situation. I fully believe that if you are completely honest about EVERYTHING; with your parents doctor or whomever you choose to tell, that no one is going to tell you that it is just in your head.
If you need help speaking to your parents prior going to see a doctor I suggest going to your assigned school counselor and speaking to them first. Ask him or her to sit in on a conference with your parents. This will also show the parents that you feel like you have not been heard. Because you went to the counselor first they will also understand the gravity of the situation and take you very seriously. I’m sure they want to get you the help you need but they do not have knowledge of just how serious the issue is because you are only telling them about the symptoms but not what is causing those symptoms. Because of the way who told your story I believe you know deep down why you are experiencing Brain Fog. Zoning out and not being able to remember where you are or what you’re doing is a black out and if you are driving during this time, you could not only take your own life but someone else’s as well and I know you don’t want to hurt anyone.
If I remember reading correctly, I believe you said your aunt gave you food. Maybe you can have your aunt sit down with you and your parents while you tell them about your dieting; if you do not feel comfortable with the school counselor. However, as a parent I just feel like it would show a little more gravity to the situation if it were to involve the school counselor. It was a call from a school counselor telling me they noticed differences in my daughters behavior and what they suspected which first brought my attention to it, then her sister confirmed what she knew when I asked her if she had noticed. I knew both of them had been losing weight. But they had joined the swim team and I just assumed it was because of that.
Understand there is only a certain amount of information that any doctor can share with a parent; a medical doctor that is. If you were to go to counseling after all tests have been ran and ruled out any other medical problem with your brain …don’t be afraid that those sessions would be discussed with your parents. I never learned anything that was discussed in my daughters counseling sessions; but she did get better. I will be praying for you and for God to lead you and guide you to get the help you need. You are to young and to smart to be going through this. I’m proud of you for reaching out on this blog now the rest is up to you.
God be with You!”

 

“In addition to my post below, here is my response
1) What are the main symptoms of your brain fog?
i used to feel very cloudy and almost like a headache. my brain just felt fragmented like the computer definition. It felft like a struggle to apply myself cognitively
2) What do you think is the underlying cause of your brain fog?
a variety of factors, including poor digestion, definitely poor sleep but my current hypothesis is that I didnt have the right ‘brain stimulation’ ie my brain was very ‘unfit’
3) Please can you describe the impact of brain fog upon your lifestyle?
It stopped me progressing at work. I stuggled to apply myself in challenging tasks. I was also quite miserable.
4) How do you deal with brain fog? What if any treatments do you use? Have they had any success?
Two things had major success for me. 1. Properly engineered brainwave entrainment – particularly the key track off WorkSharp from ActiveMindsGlobal.com; and 2. the right nutrients, specifically a bio-active b vitamin complex, omega 3 fish oil and magnesium.
5) Can you suggest any useful online resources for people with brain fog?
Two key resources:
http://www.activemindsglobal.com/
http://www.drmyhill.co.uk/wiki/Brain_fog_-_poor_memory,_difficulty_thinking_clearly_etc
6) Why do you think little attention is paid to brain fog by healthcare professionals?
Because it’s very hard to quantify or qualify the symptoms. Even a slight change in your energy output through diet, stress, lifestyle factors, poor sleep etc can substantially affect cognitive function. Also Neurologists would be the only doctors that come close but they don’t seem to focus on subjective symptoms such as clarity of thought, memory recall, cognitive processing speed etc.”

 

“1. Can’t read a book, can’t recall what’s happened in a tv series/soap, feel slightly detached from reality… a bit ‘cotton woolly’….
2. Stress, depression, menopause, hereditary.
3. Loss of feelings, don’t enjoy anything anymore, worry unnecessarily about things, tearful and anxious, feel vulnerable, upset at forgetting things.
4. Just try to work through it, try different diets, avoid situations where I feel vulnerable/stressed.
5. I write down important things
6. I have never been to Drs about it as I don’t think they would take it seriously!”

 

“1.  Flustered, irritable, impatient with self for not remembering
2.  Fatigue, Heat, Medication, Sensory Overload
3.  Conflict, Lowers Self Worth, Second-guess oneself, automatically believe YOU must be at fault
4.  REST and maintain an ambient temperature
5.  No, I have ONE place where I write my “reminders” – I have RRMS for 14 years
6.  The embarrassment of admitting you have brain fog and not wanting to know about it”

“There are many reasons for brain fog and age is certainly not one of them!  I’ve known people and have relatives that are well into their 80’s and even 90’s who are sharp as a tack.  What we eat (nutrition) has a lot to do with brain function.  Being overweight as so many are doesn’t help.  There are studies and research being conducted that suggest that toxins being released through our intestinal wall enters our blood stream and can damage not only our body but our brain.  Exercise and diet have a lot to do with being healthy in body and mind. Avoiding all the GMO and contaminants certainly can’t hurt.  I have Celiac Disease, Chronic Fatigue and Fibromyalgia along with brain fog.  I’ve discovered changing my diet, becoming way more health conscience regarding exercise and diet and shedding a few pounds has made a huge difference for me.  At 55 I’m not ready to concede. Age is only a number!  Dementia and MS took it’s toll on my mother in her latter years, I don’t want to burden my children with what we had to go through with my mom.  Eat right and exercise!”

“I too am like this all of the time. I am 65 so that is to be expected I suppose. The problem is that I have been that way since I was in my thirty’s….I even went to a physiatrist about it. She suggested keeping a notebook with me all of the time. Writing down where I parked , what I came to the store for,etc. That along with having a GPS has saved my life. I have to wonder if we try to overload our brains to the point nothing sticks there permanently .  I know when people are talking to me I am thinking of other things at the same time and do not hear all they are saying. I have found by writing down a lot of the things I need to remember that I am no longer thinking of them subconsciously and am able to focus better …It is worth a try ! It makes me so much less stressed.”

 

“Brain fog – Good word  and nice to know that I am not the only one who suffers from this.  To sum it up for me:  embarrassing; humilitating; frustrating; depressing and most of all so damn scary!  It has got to the point where I make excuses not to drive because I fear losing my boundaries begind the wheel.  Typing – forget it – so many errors.  Fingers just do not want to go where they are suppose to.  The more I try to concentrate, the worse it gets.  I also get told that I am very hot-headed.  Well for those of us who suffer from any  symptom of MS we know that pain is a daily thing we face and generally we have to face it alone .  We do not have”tempers” we just have a difficult time trying to convey our messages.”

 

“Main issues:
I cannot keep track of anything that has to do with numbers ei. dates, times, simple math, addresses, and phone numbers. My children find themselves frustrated at me because they have to repeat most of what they say to me at least twice. Depression. Can’t get a job with benefits due to pre-existing condition.
Underlying cause:
Very poor nutritional values.
Impact on lifestyle:
Unable to obtain a job.
Very low self esteem due to depression.
How do I deal:
The Wahls Protocol by Dr. Terry Wahls
I try to improve my lifestyle.”

 

“First, don’t panic! I hardly think this is an early sign of dementia! MS lesions can affect the brain and cause cognitive issues, but it sounds like you have lesions like I do, on the spine. In all the research I’ve done, it’s quite common for anyone with an auto-immune disorder to have the fatigue and brain-fog. Personally I think it’s because our bodies have to work so much harder to keep us going through normal life! It’s maintaining us while also coping with a disease. So, number one on my list is to get enough rest. Eat a healthy diet. Get enough moderate — not intense — exercise — and make lots of lists so I don’t forget important stuff. I laughed when I saw your note about leaving car doors open. I did that just recently. This is pretty minor — and it isn’t just those of us with chronic illness that do that — anyone over 50 will tell you they do this, too. Forgetfulness is a fact of aging as well. I am 54. A lot of my friends laugh when I tell them what I do and they say, yeah, I do that and I do not have MS. So they are helpful to me in giving me some perspective. Be kind to yourself. We have more to cope with than most people. If you can cut back on what you have to do on a daily basis, I find that limiting the number of things I have to do each day helps me not be so forgetful. Write stuff down. Take naps. Do one activity before starting another. Try not to be put in situations where you are multi-tasking. I get some helpful supplements from my naturopath that support me energetically. That might be worth a try for you, too. Avoid alchohol — drink sparingly because it will tire you. I limit caffeine, too, because of the post-caffeine let-down. But I use it in the morning. Hope that helps.”

“My husband age 63 (now ). In 2007 he started having periods of forgetfulness, extremely poor memory, hand tremors (slight), falling, bumping into things short term memory loss, slurred speech! In 1999 he stated chemo. For Non- Hodgkin’s lymphoma. He tolerated it pretty well and even worked a little. 2007 he got mono after the flu. He was in bed, ate & bed. He was diagnosed with chronic fatigue,2009 chemo. For B cell non- Hodgkin’s . It took care of the CA. But he has not be well since! We started going to all types so specialists. He has had brain fog since 2007 but it has progressed! He doesn’t ‘t do anything. He won’t shower! He eats sleeps, watches T.V. Then the cycle starts over again! The neurologist ruled out Parkinson’s .he has sleep apnea, uses a C Pap with oxygen but has interrupted sleep. The Geriatric psychiatrist had him straighted out for awhile. He changed his depression meds. Around and he started doing better. Now, after several surgeries (general anesthetic and three procedures for nerve impingements () and some dental work () he started going through brain fog, tripping and everything is a mess again! Any Comments…..I am tired! I want to help him! My daughter came up with Caine allergy! We have yet to speak to the Dr. He has upcoming appointments. GB!

 

“I get lost in the middle of conversations because my mind seems to literally go blank. I can’t remember what I was saying, and I can’t remember what we were even talking about. Sometimes I realize in the middle of someone talking to me that I lost track of the conversation and I have no idea what they are saying to me. I have a very hard time pulling out names, even of my own children. Often times I will rotate through four or five names before I get the right one, and thats if I get the right one; sometimes I just give up. I have a hard time focusing on what I am doing, but again, this is particularly bad with conversations. At work, I have a hard time completing tasks if people interrupt me in the middle of what I am doing because I get side tracked. Just the other day I had a particularly emotional(angry) outburst at a coworker because she kept interrupting me and repeating herself so I snapped and just said forget it, that isn’t what Im saying and Im done trying to rephrase it. It’s very frustrating and it affects my daily life. I am constantly struggling for words, struggling for names, and struggling to recollect memories from my short term memory.”

 

‘Brain Fog’…more like Brain Blizzard
1)      What are the main symptoms of your brain fog?
A)     Memory retention and concentration/focus problems.
2)      What do you think is the underlying cause of your brain fog?
A)     Secondary Progressive Multiple Sclerosis
3)      Please can you describe the impact of brain fog upon your lifestyle?
A)     I tend to stay home most days; when there’s a job interview, I usually panic and either go or ditch the entire uncomfortable experience.
4)      How do you deal with brain fog?  What if any treatments do you use?  Have they had any success?
A)     How does anyone ‘deal’ with this?  There are currently no treatments for this ‘brain fog’.
5)      Can you suggest any useful online resources for people with brain fog?
A)     No.
6)      Why do you think little attention is paid to brain fog by healthcare professionals?  If, on the other hand you feel that it is well covered by your medical support please tell us a bit more.
A)     I often wonder this same thing…if there’s a secret among the medical team, I’m feeling mighty ripped off at this point :/

 

“I have Fibro, Chronic Fatigue, Myofascial Pain Syndroms, and several autoimmune issues, among other annoying (and boring) deseases. Brain fog has been a major contributing factor to my inability to function and live as independently as I did when I was less ill.
I used to be in software and systems engineering and management, which required a lot of math and statistics, quick strategic thinking and decision making and NO mistakes. I was very successful, very well paid and well respected in my industry. I ended up going from working no less than a 60 hour week to having to go on Disability because I could no longer complete a simple algrorythm, let alone add two numbers. Multitasking was impossible, and I couldn’t stay awake or sit at my desk for more than a 10 minute stretch without having to get up and move.
1. I have all the symptoms listed above. The worst is not being able to recall words or people’s names or the names of things/places. It’s as if there’s a backfire happening in my brain like car, and I just sputter. 2. Lack of REM sleep, too much sugar or other poor dietary choices, increased pain and stress. 3. People often think I have a selective memory, which is maddening. When I find myself lost in places where I know I should know where I am, I can get panicky. Maps don’t make sense to me, and right becomes left, etc. I get angry and frustrated with myself, at times, but mostly I find myself feeling fearful when I cannot remember words or people’s names or I find myself suddenly lost. And forget about learning anything new! I can’t retain anything!Reading books is no longer enjoyable, as a result. 4. and 5. I am not able to provide you with anything that’s useful, I’m sorry to say. 6. Brain fog has never been addressed by any of my specialists in the 20-25 years I have been dealing with it until this padt year when I saw a CNP who specializes in FMS, but it it was an acknowledgement of the issue only.”

 

“It is horrible, I was a home health nurse, I didRural areas of south dakota. My fog was so bad I would get lost not knowing how I got where I was at or how to get where I was supposed to go. Frightening. I was also having difficulty filling pill boxes, making mistakes and trying to fix them was hard too.I say words I dont mean or cant find the right one to say. I can’t remember diseases and how we treat them or not remembeing little steps in procedures I had done millions of times. I quit the job and let go of my licenceI couldn’t risk hurting someone. With reducing stress it helped alittle I still do things and not remember them. Or words finding the right word to say is really bad and I cant remember names or new people. I think docs dont say anything because they dont know how to treat it. Oh I don’t drive unless someone is with me now which is rare as I dont leave my house much. Life altering.”

“hi I have fibromyalgia tmj cfs ME and degenerative disc disese ibs ius acid reflux & colitis titinitus my specialist has told me that having all these conditions at once has caused a scensory over load to my system giving me brain fog I get blurred vision head aches & then the memory loss forgetting words or what im doin starts I also get confussed & forgetfull & can become disorientated  when I get the brain fog I cant stand moise its as tho I have a bubble over my head and every sound is exaggerated 10 times louder this causes a creeping tingling sensation that creeps up the back of my head towards my forehead and gives me a pressure headache that fills like my head wants to explode all I can do when its like this is to lay down in a quiet darkend room when this isn’t possible & you are around people im sure they must all think im very ignorant as I cant seem to focus or follow one conversation at a time I tend to avoid large groups n places that are moisy or if I do go I can only tolerate it for a while & have to leave  I no longer can drive due to relapses in my thinking process what if I was to switch of or have a blank moment whilst driving ,,, im hoping once I start getting treatment for some of my conditions & they become managble the brain fog will start to reduce or inhope stop all together my specialist couldn’t give me any indications as to wether or not this will be the case I just have to go through tratments & wait & hope this will get better xxxx”

I’m really in tune with my body, so when I started forgetting things, I grew a little concerned. I’m only 43, so I don’t want to hear “it’s just part of getting older”. I knew it wasn’t normal.
As the brain fog progressed, I would wander around in circles forgetting that I was looking for something but feeling like I forgot something that I forgot.
I’d forget which house on the block was my best friends’ house. I’d be behind the wheel and forget I was driving. I’d “snap to” and realize I was on my way home from work….and driving on the freeway.
As it progressed further, I found myself frustrated and terrified. It was affecting my job. I get little ‘blips’ in my head like someone hitting  a reset button. At least once, I would become disoriented standing on the front porch of the home where I lived for 13 years. I had to search for my phone and my keys SEVERAL times a day and it was making consistently late for work, even when I made it a point to put those things in the same place every time I used them. I couldn’t’ remember NOT putting them back where they go. I was forgetting names of people I have known for years! There was always a vague feeling of unease. I would burst into tears out of fear and frustration. My husband thought I was just making excuses.
Sometimes, it feels like daydreaming but I don’t know it was fog until after I ‘snap out of it’. I never said to myself “hey, I’m having brain fog” it’s always “hey, that was brain fog”.
When I described all the symptoms to my doctor, she gave me a simple test for dementia. Then she started labs. I was reading up on everything I could. Even though there is too much information out there and I’m no doctor, you do know your own body.
Menopause gives you brain fog. So does Diabetes. So does Celiac. So do vitamin deficiencies. Quadruple whammy.
I’m slowly but surely getting the ball of yarn untangled with the help of my Lord and my doctor but I thought I was going insane for a while. I think what has helped the most besides prayer is the vitamin B1. When the labs came back, the thiamine reading was so low, the equipment couldn’t detect it.”

“1)      What are the main symptoms of your brain fog?
Short term memory, can’t think forget my words, cannot focus or pay attention for long periods
2)      What do you think is the underlying cause of your brain fog?
Chemotherapy and being put to sleep too much due to having several surgeries
3)      Please can you describe the impact of brain fog upon your lifestyle?
Caused severe depression and issue with my previous diagnosis of PTSD, Lost my JOB
4)      How do you deal with brain fog?  What if any treatments do you use?  Have they had any success?
Take it day by day and so far nothing has helped
5)      Can you suggest any useful online resources for people with brain fog?
Unfortunately not
6)      Why do you think little attention is paid to brain fog by healthcare professionals?  If, on the other hand             you feel that it is well covered by your medical support please tell us a bit more.
I believe most people think it’s an excuse”

“mine started almost 4 years ago. i have cfs and fibromyalgia. but i thought it was alzheimer’s starting at an early age (i’m 53). i gave away my car. i would get lost on streets i grew up driving on. didn’t recognize where i was, and panic and tears would overwhelm me to the point that i thought i was having a heart attack. i started isolating because i was embarrassed that i couldn’t speak a whole sentence without losing my words. i still can’t speak a whole sentence. i get aggravated when i can’t find a word and people get impatient and are no longer interested in what i have to say. i feel unimportant. i want to finish  my sentence! my friends have now all fallen away. i can’t cook a dinner without panic. total confusion in the kitchen. when i’m alone, it’s fruit or frozen veggies, mostly. maybe a piece of meat. one thing only, or i lose it.  i feel stupid when someone tries to show me new things. it’s like it goes in one ear and out the other. i can’t take ‘focus’ meds, as they make me nervous. i have recurring major depression and anxiety disorder and ‘agoraphobia’…i think that comes from isolating because i don’t want anyone to see what i’ve become. i take the meds and hope for better days. i’m not so sure, though. i just want help. the only person who listens is my shrink, and that’s only because she’s paid to. and even then, i’m not so sure she does. if you only knew how long it took to write this. i need someone to listen and help :'(“