2.5 years on, still no firm diagnosis. I place this post in hope of someone being able to relate.
My primary symptoms at onset were :
Episodic - Brain would go into a strange state of fog, dizziness (non vertigo), spacial discomfort (extreme nervousness in crowded/public places) - No history of anxiety or problems with nerves (used to DJ infront of 1000's of people for many years). This started from age 30.
Then came :
Tinnitus, (two tone high pitched in left ear), Insomnia, headaches, short term memory loss, extreme anxiety, depression, muscle aches, daily headaches, neck ache, IBS type symptoms, VERY vivid dreams every night.
After many tests, and many many doctors, all blood work and MRI's (2 x Brain, 1 x C.Spine) all came back normal (Hmmmm, don't feel normal!).
Current daily symptoms :
Exreme nervousness when making eye contact (physical symptoms are not like panic attack, more head pressure, need to get away, jumpy etc) - are these panic attack symptoms - I dont have the racing heart, feeling of passing out - although I do get nasty adrenaline hits when approaching people and thinking about making a fool of myself).
Tinnitus - almost gone, dizziness comes and goes throughout the day. I can have many episodes. One minute fine, the next, disequilibrium, spacial discomfort, headaches, ear pressure etc.
Things that are true about myeslf :
I feel better on my own - eg Watching TV at night
I have dark rings around my eyes.
I cant seem to aproach anyone without extreme nerves (Anxiety or underlying pathology?)
My brain doesn't seem to switch off (horrible nightmares, dreams), I'm also aware of sub-concious thoughts during the day
Strange vision problems recently - Body and head appear out of alignment, I seem to miss mid-line of picture. This is by far the hardest to explain and quite alarming when it happens.
Possible past diagnosis have included LYME DISEASE, CFS/M.E, VESTIBULAR NEURONITIS, LABYRINTHITUS, STRESS (Are you surprised - Sorry!...), BURN OUT, ADRENAL FATIGUE
Any clues or people suffering with similar symptoms, replies greatly appreciated. I would be most interested to know what works for you.
By the way, I've been on every kind of Antidepressant known to man. I am intolerent of high doses and found the best medication Amytryptiline (10mg) nightly. All the rest gave me absolutely indescribable side effects (some, even after only 1 tablet).
Take Care, God bless and thankyou for reading.
All the best,
Last edited by moderator2; 11-26-2005 at 02:26 PM.
Reason: follow your question here on the CFS board - please do not cross post multiple boards
Mletters, we have crossed paths before my friend. Sorry to hear you are still struggling with things as am I. To me, your symptoms sound a whole lot like CFS, although I failed to notice one important symptom that you may or may not have forgot to mention. Do you experience post-exertional malaise? This is when over-exertion, either physical or mental, makes you feel even sicker for several days following the event.
For example, many CFS patients, myself included, lived very active lifestyles and exercised daily. Now, we can barely spend an hour walking without feeling terrible afterwards. It is perhaps the most frustrating part of having CFS and also the 'hallmark' symptom. If this is absent, I would seriously reconsider the diagnosis, because it is highly unlikely to have CFS and not suffer from this. However, many Fibro sufferers can still exercise without feeling worse although their chief complaint is extreme tenderpoint pains and I didn't see you complain of that either.
I'll tell you what, if you haven't already been tested for it, consider asking your doctor for a Celiac Disease blood test. This illness revolves around intolerance to gluten, which is present in wheat, barley, and rye. People who ingest gluten and are intolerant to it can experience a very WIDE range of symptoms, any or all of which you mentioned, and no two people will experience it the same. The most common complaint for a Celiac patient is intestinal discomfort (you experience IBS-like symptoms), although it is only present 50% of the time. The second highest complaint is fatigue, which I know you already have.
If you suspect this, a blood test and maybe an intestinal biopsy can confirm it. Of course, the only known cure is to eliminate gluten from your diet and you will regain the majority if not all of your pre-existing health. I feel its important to test for this when trying to rule out CFS because, like you know, CFS is rather difficult to confirm and everything else has to be ruled out first. Also, Celiac disease is HIGHLY underdiagnosed and should be tested for when you have not been given a firm decision on your diagnosis. Of course, I could be wrong, but you have nothing to lose at this point. Do a search for Celiac disease and learn as much as you can about it and please fill me in on your thoughts about this...
I told him that a year ago...Also, do you have good oral health? What about amalgams? These are all possibilities, but I think it maybe a gluten issue..It's very common in the U.K. as well as Americans with irish/swedish,scottish,dutch, and english ancestry. We all want you to get well Mike since you have been misdiagnosed. I bet you have celiac disease though, just a hunch...
Last edited by thomas3000; 12-02-2005 at 02:01 PM.
Thanks for the advice. I am going to ask for a Wheat intolerence test.
I have now come down with Flu like symptoms - Sore throat, feel blocked up. I think the vision thing could be linked to this.
I have noticed its not that bad first thing in the day, but seems to get worse as the day goes on. Is the Flu Exasperating my symptoms?
THIS IS THE STRANGE BIT -----
Panic and Depression has suddenly come back and WHAM! hit me really bad. The strange thing? It has been like this for exactly 3 years running at EXACTLY the same time. I go through many periods in the day, where one minute fine (well, my defenition of fine anyway!), then all of a sudden feels like a Black cloud just drifted in. I loose my appetite, feel Sick, Cant think straight, get strange headaches and CANNOT CONTROL MY EMOTIONS. I just burst out crying for no reason. I am like this from NOV/DEC to APPROX MARCH/APRIL and then I have a good few months again. THREE YEARS RUNNING I HAVE FOLLOWED THIS PATTERN. IS this SAD & Vestibular Disorder?
I am still trying to figure out of this is INNER EAR DISORDER or is it CFS/M.E ? I have had a dx of both but question the M.E as I DONT have any fatigue. I have never been laid up in bed for more than a couple of days with a bad bug earlier this year.
I HATE DOCTORS! They are so patronising. When I reported my Neuro symptoms yesterday, his words were 'BE CAREFUL, YOU DONT WANT TO GO RUNNING BACK TO SPECIALISTS FOR MORE TESTS. THEY MAY GET SICK OF YOU!'. I wonder how he would feel if he had my symptoms for a few minutes, never mind every second of the day for the last 3 years?
Never the less, I have ordered blood tests from the Doctors (which h finally agreed to do) to try and find out if there are any markers to indicate I have M.E. I am told the tests to have are FBC (Full Blood Count), EBV (Epson Bar Virus), Mono & Liver and Kidney functon tests.
I went yesterday and gave blood so will have the results back in a week....
P.S Only abnormal test I have had back is Caloric test using Air - No response on my left side. Is this a reliable test with Air instead of water? I cant stand having water in my ears since I went swimming a few months ago, got water in my ears and on one side, water got trapped (strange that it is the affected ear!), and when I walked I could hear the water in my ear. I freaked out, but luckily it disappeared in a couple of days. Could this be a perforation in my ear, which is also causing my other symptoms?
snap! I get the variable brain symptoms you describe. One minute I am alright and another I get a black cloud or feel offbalance or just really uncomfortable in my head. I had this 13 years ago start with dizziness and fatigue. I get variable fatigues and have had times when i dont get any fatigue. I have been to a dr this week in england who believes ME/CFS to be undiagnosed or misdiagnosed hypothyroidism. I went to him last year and started taking T3 which I thought had helped my brain, but not the symptoms have come back again and only go down when I am resting. I dont know about celiac disease I have not been tested for it. I am sure they would have worked that out by now if thats what we all had. Perhaps get your thyroid tested again and get the TSH, free T3 and free T4 values. Look on the thyroid board too. I too would like to know if I have hypo and this is why I am trying this T3/T4 treatment. My thyroid tests gone out of the normal range now coz of taking the pills but I have to try something to get back my health. My brain never used to bother me that much in the beginning, all i ever used to get was a bit of brainfog but it feels more uncomfortable nowadays with worse symptoms than before. But it varies througout the day and right now it doesnt feel too bad at all but this afternoon i felt awful. hope this helps
I have advice for both of you. First of all, you both suffer from anxiety. That's obvious. I would get some L-tryptophan and some L-tyrosine. Give it a couple of months and your symptoms should go away. BUT, this is just treating symptoms. You should both go on a gluten free diet starting after you read this post. If you read the book "Dangerous Grains" you'd be suprised how many health problems are diet related. I know the health anxiety is relentless that's cuz your deficient in serotonin/dopamine and possibly magnesium. Don't go to regular docs, find holistic practioners that find underlying causes through food intolerance/allergy testing. I would cut out Dairy, Grains, and soy products for at least 6 months. Do you have mercury fillings? Perhaps you have underlying infections under them.. If you have head pressure/fogginess, I would get a dental cleanup...This could eventually turn into something you don't want to deal with, so get off gluten and find a mercury free dentist. Check out the post on Silver fillings. People's symptoms just disappeared after removing that poison from their mouths...
Last edited by thomas3000; 12-03-2005 at 10:47 AM.