I have been suffering from a mysterious illness for the last 18 months. Every day I cycle through dizziness in the morning (30 minutes after getting out of bed), waking up at 06am every morning on the ***. Vivid dreams/nightmares every night. Then when I get to work I have the wierdest symptoms.
I am afraid but I don't know what of. I just feel really empty and down inside. Whenever I have to meet someone or walk toward someone, I feel like I am going to pass out. I get what feels like a rush of blood to my head. Then my arms and hands just dont feel right. If I try to drink something I feel as if I would drop it. I shake uncontrolably.
I also notice a horrible pressure sensation behind the top of my nose and forehead. It just doesn't feel right when I look at people I have a horrible dizzy sensation (not vertigo).
My armpits are drenched by the time I have got to work. My hands are sweaty.
Also, my jaw goes stiff and sore. I also have Tinnitus, TMJ, neck pains, insomnia, depression, weak legs with random pains in them every day.
Can anyone please help me? I've tried 18 doctors and all just say all tests are normal. I really feel like I AM GOING CRAZY.
I can't go on for the rest of my life avoiding everyone and living in ISOLATION. Right now I cant see me living beond the end of the year!
Im really sorry you are still feeling so bad, was wondering how you were the other day and hoping maybe things were a bit better for you. Im much the same really but with the odd better day. I have just posted to woozy guy about my visit to Dr Peatfield and that he thinks I have partial adrenal failure and possibly thyroid involvement. He was really great and knows his stuff regarding adrenals and thyroid. Have a read and see what he suggested to me regarding meds. Maybe you could contact him with your adrenal results and see what he says.
Im sure things can be better than this for you, and I know getting to the bottom of this is a nightmare, but dont give up please, the answer is out there Im sure,
I'm really confused (more than normal!). I've just come back from the R.V.I in Newcastle where I had a Short Synacythen Test (Normal dose not low!). The Results were 490 (at 09:30), 540 (at 10:00) and 650 (at 10:30). They have said that it is normal and have kicked me off the Endo list with no follow up!
I am really confused as my ASI profile showed low midnight Cortisol/DHEA response (saliva test). My Serium 9am Cortisol was 398n/mol (cut off or concerned point was anything lower than 500n/mol - that's how I got the SST!), but my 24 hour urine Cortisol was normal (638nmol).
I've also started taking Doxyxycline 200mg daily in case of Lyme, but apparently the consensus on this board is that it's not high enough. I've got some wierd symptoms the last couple of days (mouth or toungue feels numb at random times) and also feel more tired than normal (Yyyyyyawn!).... Could this just be s-fx of med (I've also started taking Amytryptiline 10mg nightly for pain/sedative effect).
Perhaps someone on CFS board can answer this question.......
If 2 x Brain MRI's are completely normal (no lesions), Synacythen test (Cortisol response/adrenal reserve) is normal, if I can walk 3-4 miles a day without payback, am still working full time - DOES THIS MEAN I DON'T HAVE ME/CFS?????
Also, the only abnormal tests upto now are Mild Carpal Tunnel, abnormal Caloric test (ENT) - dizzy one side but not the other when using Air and cold temp.
Does this just add up to VESTIBULAR DYSFUNCTION with CNS damage?
I'm running out of Doctors and tests to go for now. Everything else normal! (I certainly don't feel it!)
Oh yes, high anxiety and depression (definately linked to dizziness, pressure behind eyes/nose and uncertainty of illness - what do I have - is it an undiagnosed illness)
Sorry about the test not throwing any light on things and the endo stuff. From what I have read, endos are generally pretty appalling and the experience I have had has been too. They did the same to me when some blood tests I had done were ok years ago, they dont give a stuff that you are still ill with SOMETHING!
If you are still thinking adrenal problems it would be worth you ringing Dr Peatfield or sending him a copy of your ASI profile. I spoke to him a couple of times before my appointment, he is a really nice man, although I suppose the proof is in the pudding so to speak so I will see if the meds he suggested help me.
I still wonder about the Lyme thing and will fall back on that if this doesnt work. Plus I wonder about inner ear or neck related dizziness too - its a nightmare isnt it? I get very anxious when Im dizzy too, hate going anywhere and being with people, its just too much like hard work.
You are certainly different to me that you can walk 3- 4 miles (I struggle to be stood up or walking for any time at all, get horrendous fatigue) There is something wrong though that is casuing all those symptoms even if it isnt CFS. I read in another of your posts that you are going for a sleep study, you will have to let me know how that goes (hope it sheds some light for you) I guess you are having to pay privately for it?
Exercise intolerance is a major symtom of CFS. If you are not experiencing this perhaps your problem lies elsewhere. If you haven't already, I would check out the CFIDS FDN. Home page for a definitive list of symptoms necessary to receive that diagnosis.
I'll let you know how the sleep study goes. Sounds pretty good. I met with a new Neuro last week (Dr Reading) who is a specialist in nothing but ....... you guessed it.... Sleep studies.
He kindly listened to my story and said his main concern was sleep, mainly as you know with CFS/FMS if you miss out on Stage 4 / delta sleep (or quality of this period of sleep is impaired) then you can get fatigue/muscle/nerve related problems anyway. I guess it makes sense.... try depriving someone of sleep for a few days and hey presto.......you run in to problems. I only wish our cases werer that simple (have a good nights sleep and you'll be okay tomorrow - Hmmmmm... if only!).
He has also recommended a new drug called 'Pregabalin'. Apparantly it is used in the treatment of 'neuropathic' pain. It is prescribed for pain and fatigue and is used in treatment of FMS and Epilepsy. It also helps with Anxiety by working on the GABA receptor thus calming anxiety. I hope I don't have servere side effects (just like most of the AD's!).
I'll let you know how it goes with the sleep study. I'm going to be wired up with electrodes and then they don't even keep you in hospital over night any more. They monitor you from home ! Amazing..... Hope they don't have control of my bodily functions whilst I'm wired up to this thing!!!
P.S Next few treatments for me is Accupuncture tomorrow and then first visit with a Nutritionalist next wk! If I don't get any luck with tests in the next couple of months then I'm off to the States to see some LLMD's and Pain specialists. It'll cost but I'll pay anything to feel normal again!.
They seem much more clued up than N.H.S (Nuff Said!)
mletters - I have the same exact word to word symptomes... I been on a search to find an answer as well... you know I like to talk to you in detail... Becuase I like to share u my tests results and everything..
I am always dizzy in the morning throught out the day, blood flowing through my head, just sucks.. Pain in the head.. Always feeling dizzy and passing out feeling..
Please tell me more about you, when did you first start seening the symptomes ?
If you're coming to the states give me a jingle....don't go see those pain specialists...I was wondering if you went on a gluten free diet like i told you....You have to find the root cause here....At least try it for a while, you'll be pleasantly suprised...
if all those things happen and nothing within the realms of your non-psychological physiology is amiss. Consider psychotherapy/CBT. Might work - seems to work for everything (well that's what they say anyway).
Last edited by Administrator; 04-07-2005 at 06:37 PM.
Reason: Be nice.