GIlbert's Syndrome and the Nervous System

Let me also add that on most days I must take at least one nap to function properly.I usually get very sleepy and dizzy around 2 pm at which point there is absolutely now way for me to focus on my task at hand since my brain capacity is then severely diminished. But even outside of this tie of day I am sleepy most of the time, finding it difficult to focus on listening to other people and learning complex things. It is affecting my academic performance a great deal. On the few days when I body functions at full capacity all these symptoms disappear, but like mentioned in the previous post, that happens no more often than twice a week.

Hubert

Hi Hubert.. My son has presented symptoms since he was about 5 years old but was not diagnosed till he was 16. We had many many visits to the doctors for tests etc until he was diagnosed. You know your own body and if you feel you need to see a doctor then I would go.

I think from that there is a wide range of symptoms fatigue and dizziness being the most common. My son also suffers from anxiety and depression when he is having a severe attack. We have found that diet helps certain foods make his condition more extreme, he eats little meals often plenty of fresh vegetables he limits fruit as the liver find it hard to process fructose. No coffee or tea and plenty of barley water this helps the liver.

The doctors were not helpful at all. When he was diagnosed they told me he would not have any symptoms and it would not affect his day to day life. How wrong they were.

We felt upset and let down by his GP they gave no support or advice what soever.

This forum has helped him understand he is not alone in his condition that you do have symptoms it's not your imagination and you are not going insane.

We are still researching this enigma of an illness.

Stay strong

Hi Heuy!

Yes it could be related to the gilberts as I also have a foggy brain and my IQ isn't the same but mainly because I can barely remember a thing. Your symptoms seem quite severe though! Kay has some good advice, cut out all caffeine in your life, I only drink water and alcohol for special occasions and I feel far better! Eating healthy makes a huge difference and sleeping is a must.

For stress, an amazing thing I have learnt to do it write down everything that is on my mind in a diary as it defogs the brain. When you know you have lots of things to do, write them down on a list with as much detail as you can because if you are like me you will forget some of the important things.

Coconut water is amazing if you want to boost yourself. If you are like me, studying too much actually makes me remember less. Make sure you give yourself breaks and do not sit for too long!

Good luck with everything

Issy

HI Huey, I feel very sorry for you as I know exactly what you are talking about on so many levels. I too felt and continue to feel stupid a lot of the time due to the brain fog. I had to discontinue my degree due to migraine caused by chemical intolerance. This is possibly in addition to the gilbert's but even in a non chemical course, I still suffered and struggled with what should have been manageable work. My head gets so hot I feel like it is exploding, I have eye pain and I feel like someone has tightened a clamp around my head. Sometimes I simply cannot think. My words get all jumbled up and my thoughts scattered. It is shattering when you are used to being reasonably intelligent. Also, my arms and legs feel like they have lead weights on them. I can't sleep properly and get worried about things.

After completing my non chemical degree I continued to struggle with a stressful full time job with additional study required for qualifications. Finally after several years I had to quit work. I felt so sick at work and was working extra hours to try and keep up with all the 'normal people" so it was a downward spiral really. I went on a huge health kick and tried to exercise, consumed vast quantities of health foods and potions and powders, saw many doctors and did not improve! I found actually that the exercise made me worse, so I came to the conclusion that my body was unable to make energy properly or that there was some chronic sickness. I had many tests done, none of which showed anything wildly abnormal, so after a while there was nothing much to test. Doctors wanted to throw other labels out there like "depression" and "chronic fatigue" but really they had no idea. The gilberts was diagnosed but I was told many times that it was nothing. I had to have my gall bladder out at 25 which is very young. This can be associated with gilbert's.

When I try to do any work be it physical or mental, I have no stamina and if I push to keep going when I feel tired, I feel even worse, nauseated, weak, burning in the head, headaches etc etc Anyway to cut a long and boring story short, I still have all the same symptoms, I now work part time and in a less stressful job than I had originally trained for, I managed to have 2 children although they exhaust me, I am frustrated a lot of the time, but at least I am here. I hardly do any exercise although I used to love it, I gave up nearly all my hobbies and just do the bare minimum I have to do get by. Don't give up, there are worse things and still many joys to be had. I still have hope that one day I will feel a little bit like my old self. If enough of us carry on about gilberts maybe someone will do some studies and realise that it is not asymptomatic.

The thing I find really hard still after living with this for 29 years, is that you have to try to hide it all the time, so other people don't know your brain has stopped working. It is very difficult to tell anyone about it as you look ok and seem ok so what could be wrong? no one can imagine the annoying symptoms that accompany this illness and the constant pain you have in one form or another. I am very lucky as I have a wonderful husband who tries to understand. He knew me before I got symptomatic so knows the difference.

I suppose the best bit of advice i can give you is work out your limitations, try to stay within them, eat and drink healthily and try to avoid/reduce or plan around stressful situations. Learn to say no even though it disappoints people. They are not the ones who have to go to your job and do your duties with a dead head. Try and keep up some work because if you keep busy and be around others, you won't wallow in self pity as much and it helps keep some functioning happening. I wish you all the best of luck in this journey!

Hello Hubert,

All your symptoms seem to be Gilbert's related from what research I have done since being diagnosed recently. I have had strange illnesses and symptoms all my life, always been tired and needed lots of sleep, always been rather yellow at times, had strange abdominal pains, weeks of severe nausea and sickness at a time, brain fog and dizziness to name but a few. I am now 51 and going through the Menopause, which has really made things bad. I have suffered from bad headaches and Migraines for the last few years, which has been the worst GS symptom to deal with as the Migraines were occuring every couple of weeks and lasted several days at a time. As soon as I was diagnosed with GS, I started taking Milk Thistle supplements and drinking at least 2litres of water daily. I didn't feel any better until I installed a water filter. All my cooking and drinking water is now filtered and the difference is amazing. I have not had a Migraine since drinking filtered water, although I  have had the odd headache that doesn't respond to painkillers. Gilberts seems to be all about toxins in the blood so the more toxins you avoid, the better. Diet is a huge factor as is alcohol intake. I am always really ill when I am painting too. This website is full of useful information. I am still ploughing through it. It is a huge comfort to realise all the different problems I've had have been caused by GS and there are plenty of others with the same experience!  I hope you find it helpful http://www.gilbertssyndrome.com

Hi Hubert,

I have lived with the same symptoms as you most of my life And they have become worse as the years have gone by. I am 46 now. I never stopped searching for an answer to my symptoms and had been diagnosed with ME and Fibromyalgia, viruses , psychological problems etc.....but always believed there was something wrong inside that needed to be fixed. By accident I came across a wonderful Chiroprator. He discovered that my top 2 vertebrae I.e. C1 and C2 were out of alignment. This does not show up on XRays or MRI's, only on a particular CT scan. I have been attending him since last October and the results have been dramatic!! As explained to me, if your top vertebrae are out of whack, they impinge on the nervous system causing a myriad of problems, balance issues, headaches, sinus problems, chronic fatigue, weakness, anxiety, depression, irregular temperature, tension in the muscles.....the whole body is affected! 

I would strongly suggest you look up atlas and axis subluxations which describe it a bit more thoroughly and see if it applies to you. You will then need to find a great Chiropractor who has a thorough knowledge of these 2 vertebrae in particular

It has been like night and day for me getting adjusted. My body is still healing but each week I can see improvements. Unfortunately the longer you have the misalignment the longer it takes to heal but it is well worth the patience.

Wishing you the very best,

Ann Marie

Hi Huey,

I read your text and seems me and you have the same problems , i will get on the beggining of this problems, before a 3 years ago i was a quite normal person i was able to do all my tasks with no problem then i started a college and that also wasn't problem for me. First year of study i was ok and also a second, but this year when i manage to get in third year of study, in january i started to get problems with my head and body i seems always tired excpecialy after consuming alcholol and having some stresfull situations, i wasn't able even to do some exercise because exercise and study to much made me even more tired and exousted.. So to cut the story, in 5 month this year i was on vacation with students and we have consumed a lot of alcohol wich made me to a condition that i never felt before, after few days i have hard heart beating,sweting a lot,tired and hard to get out from bed, that made me to go and visit a doctor which sent me to blood test, and after that they find only high level of bilirubin in the blood almost double of normal. From that day i have terrible brain fog, no able to concentrate on anything excpecialy on study. Now is september and from june to september i was almost every day exousted,brain fog, hard hart beating(which now is ok), anxiety and loss of wheight.. Now before 10 days i was trying to study for one exam which made me tired and brain fog. And now when i trying to study for another exam my concentracion is terrible, i cannot remeber a thing, i'm so angry on myself and everybody around me, also i'm so forgetible, i forget things in 10 seconds. In june i was visit a psychologist but he didn't helped me to much. SO I REALLY WANT TO KNOW HOW DID YOU GET WITH YOUR PROBLEMS AND PLEASE GIVE ME ADVICE HOW WOULD I TREATED MINE or can anyone else please give me advice, i will now try to take magnesium and some minerals to see can it do things better. Sorry on my english. Bye

Hi Hubert,

I am 35. I have the same symptoms what you have. Dont worry you can manage yourself by doing some things. My situation was still worst. I was diagonized with GS 5 years back. From then I am taking medicines. All these medicines start degrading your nervous system. till one month back my neurvous system is very weak.I started practicing YOGA, Pranayama and meditation. This is giving a good result in re-establishing my nervous system. In first 2 weaks you feel very fetigue and tired after dooing YOGA. Later you will develope a fentastic strength and stamina with in you. 

Appart from the above you should controll your dite. Eat 5 times a day. Avoid alcohol, chicken and meat. Avoide oily/fried items. control your dite. avoide food that stress your leaver.

Think positive.

 

Hi Huey,

I relate and empathize. My symptoms are neurological and well as digestive (unable to gain weight). The weight issues have persisted since birth, but the neurological stuff has been building over the past ten years or so.

So far I have found that zinc and bcomplex are helping with the brain stuff - I use a raw whole foods based supplement. But it has been less than a week, so I will see how it goes. Hope this helps.