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mletters 08-16-2005 06:12 AM

Anyone know what this could be? ...

I came down with a mystery illness two years ago. It started in Sept 03 with dizziness when leaning forward, altered state of conciousness (I would feel my vision tunnel) but I would know when I was back to normal (or feel normal anyway!).

This lasted a few weeks and then came the other symptoms, brain fog, forgetfulness, head and neck pain, headaches, tinnitus, etc.etc.

This lasted a few months until Feb/Mar 04 when I had a good few months with most symptoms disappeared, little dizziness and back enjoying life again.

Lo and behold, comes Sept/Oct 04 and wham! Hits me again, dizziness/disequilibrium, headaches, cant talk to people because of andrenaline hits, panic etc. This lasted over Christmas 04 and into Feb 05

The last few months have been again, fine with little problems with dizziness etc....until Last week. It started as a headache in forehead when bending down and then came the panic attacks, fuzzy heads, dizziness, anxiety etc.

It is the hardest thing to describe, kind of like Im in a bubble. I can't focus on anything straight away, my forehead feels funny. This comes and goes many times throughout the day. The best time for me is the first 20 minutes of waking in the morning, and lying on the couch on my return from work (which is what my life has amounted to since this thing hit!).

I have had loads of Mri's (2 x brain and 1 x cervical spine), thyroid checked, all bloodwork done, tests for adrenalin insufficiency (addisons etc), vestibular function tests (had caloric test with air and no response on one side - the other sent me dizzy - as it should).

I've seen Clinical Immunologists, GP's, Rheumotologists, Neuro Otologists, ENT's, Neurologists etc.etc.

I'm completely fed up. I've had CBT, accupuncture, tried Vitamin therapy, massage (every week), NLP (works on pressure points and self-afirmations)

Anyway, here I am. Two years later I feel as though Ive taken two steps forward and ten million back! Has anyone got any idea what could be causing this. As I write, my eyes seem out of focus and I have this whoozy feeling in my head. I know there is an element of Anxiety/Panic in this thing, but is this panic due to the illness not the other way round.

Thank for any replies in advance.

Here's hoping for better days!

Take care,


Kali M 08-16-2005 03:40 PM

Re: Anyone know what this could be? ...

Your symptoms sound very familiar, although mine started a little differently and my dizziness and HA's didn't come till later. My thyroid labs were normal from 1999 until 2005 (this year), when they finally went hypo. (Would you feel like posting your thyroid lab results here or on the thyroid board?). The Syntrhoid I've been on for only 2.5 weeks has helped some with the dizziness, dry skin, chronic constipation, and muscular pain, but my doc is still looking at Chronic Fatigue and Immune Deficiency Syndrome. Your symptoms fit this as well. There are a lot of REALLY good books at bookstores (and available online) on CFIDS/Fibromyalgia. You might get one and read a little and see if the symptoms sound like your own?

Do you have fatigue in addition to the dizziness? And what about pain? Any musclular or joint pain at all?

Symptoms could also be Anxiety, but in my experience, folks who have anxiety kinda know or have a feeling it's the anxiety causing the problem. Do you FEEL anxious prior to the symptoms coming on? Were you an anxious person prior to the beginning of all these symptoms? (Or is it the symptoms themselves and the feeling of helplessness in all this that's making you anxious?). Some hormonal imbalances (i.e. DHEA, testosterone, and thryoid deficiencies can make folks feel anxious as well).

What other labs were done? Any viral tests? (EBV, CMV, Hepatitis panels, HH6, etc?).

Another option (though I believe less likely) might be Lyme disease - especially if you remember having been bit by a tick or having a nice bull's-eye rash. It's a bit contraversial, but I believe there is some truth in the increased numbers of folks with lyme. (See my conversation with Bothrops just recently).

I know how frustrating this is. I would not even consider CFIDS being a possibility for a few years - my symptoms have gradually come on over 5.5 years and have been very bad for about 2.5 - 3 years now. I will say, I'm really impressed at all the specialists you've been and the tests they've done. Many folks just simply get told "it's all in your head" or that they're psychosomatic. Of course, I also know how it is to have a test and NOT want them to find something, but still WANT them to find something, just so you finally have an answer and something to grasp at trying to treat!

Hang in there. And keep an eye on this board. It's not as active as others, but they say that's common in CFIDS/FM patients because we're usually so exhausted or wracked with pain.


mletters 08-21-2005 02:39 AM

Re: Anyone know what this could be? ...

Thankyou for the swift reply.

I am even more confused by all of this now.....Can anyone advise if the following sounds familiar :

Started just over a week ago, as well as dealing with daily dizziness, headache came on, anxiety (daily) got worse, on Friday I just suddenly lost my appetite completely, my body felt tender to touch, my head/neck/back just felt sore. Over the past few days my I kept getting mild abdomen pains off and on. Nothing servere or cripling just noticable and annoying. By friday night, I ended up in E.R. Doctors didn't have a clue (surprise! surprise!) and insisted that I had food poisoning. The next morning (sorry for the detail), my stool was foul. Horrible smell, Light brown and runny. I have taken a sample of this and sent to the Pathology Lab at the hospital (still waiting for results!).

Anyway, I woke up Saturday morning, and the horrible sick feeling, body sensitivity etc. has gone. My stools still aren't normal (but aren't runny anymore). I still keep getting abdominal pains off and on. I had it this morning when I woke up. Trouble is, I dont know if thie pains are due to nerves/anxiety. Could it be the CNS ?

I am thinking of going to see a Neutritionalist soon. Anyone recommend? Are they the best people to see. So far for this undiagnosed condition (well, I have been diagnosed with Vestibular Labyrinthitus) doctors just HAVENT GOT A CLUE.

Sorry to rant and go into such detail. Just needing help and advise.

I am also scared stiff that if this is M.E/CFS, that I will end up bed-bound or in a wheelchair. Is this possible since I have had this for over 2 years now but it hasn't happened so far? I think the fear of this happening is making me worse!

Take care,

Mike XXX

Kali M 08-21-2005 03:49 PM

Re: Anyone know what this could be? ...

(Hopefully you'll get more responses than just me!) :) The board has just been too daggum quiet lately.

I'm SO sorry you spent an evening in the ER. That sounds just dreadful. And it doesn't surprise me they thought as they did. ER's are great for keeping someone alive, but don't work well with longterm, chronic, undiagnosed problems. They just don't have the time to spend ruling lots of things out.

Your symptoms above sound like gastroenteritis (stomach bug - similar to the flu). And it may be that your immune system is lowered now (from whatever has been causing you to feel so bad these last two years), and you caught a bug. You haven't had a problem with your bowels or abdominal pain before this have you?

Do you have a copy of your thyroid labs? If you do post them here or on the thyroid board and let's REALLY see if they were normal. Some of your symptoms sound like hypo or hyperthyroidism. Often, if you have Hashimoto's disease (autoimmune hypothyroidism), your thyroid can be hypo then hyper alternating until it just plain gives out and goes hypo completely. Both hper and hypo thyroidism can cause feelings of anxiety and shortness of breath.

If you feel your diet is lacking, or you are gaining or losing weight, or if you simply don't know how your diet is and want education, going to a Nutritionalist may be beneficial. But, if you're going due to the symptoms you've listed here and on 8/16, I don't think that's where you're going to find answers.

My suggestion would be to find a general practitioner or family practice doc in your area who is known to spend more than 15-20 minutes with patients per visit (call and ask the secretary how long appointments usually are), or find someone who believes in using alternative or complimentary medicine.

My dizziness has gotten better since I went on Synthroid. My TSH was under what the lab listed as a "normal" high number, but it was OVER what the endocrinologists association's guidelines list as the normal high. "Normal range" by them is 0.3 to 3.0.

Don't freak too much about the M.E./C.F.S. diagnosis. Most people don't end up in a wheelchair or bedbound. I saw in one of my CFIDS books recently that folks usually reach their worst by at least 4 years (meaning you could hit bottom before that), and then tend to start getting better. Many folks I've known have gotten better over time (with occasional periods of illness when they get overrun or over-stressed).

One problem about getting a CFIDS/ME diagnosis is that many folks just don't know that much about it, or think it's all psychosomatic and in our heads. There is plenty of evidence out there contrary to this belief, but you as a patient are going to have very little success convincing a healthcare provider or any sort something different from what they've been taught in school (as professors and textbooks seem to be equated with GOD). I saw 2 GP's, 3 endocrinologists, 3 Internal Med docs, 1 orthopeodist, and 2 pain clinic docs before getting a "possible" diagnosis. I will see a rheumatologist soon to rule out any other problems first.

I totally understand why you would want to avoid considering CFS (because I did this for 5 years!). BUT, the good thing is, if none of your docs can find anything "diagnosable" and no one is helping you get better, some of the suggestions for CFIDS patients MAY HELP YOU, regardless of what you truly do or don't have. Many of the supplements used by CFIDS docs are healthy solutions for other folks and may benefit you and your symptoms.

Again, hopefully someone else here will add their thoughts. I hate to think that all you get for your time is my own 2 cents. :) Hang in there. Please return and keep us updated on how things are going and any progress you're making. (And post those thyroid labs if you can; I'm REALLY curious about these).


mletters 08-24-2005 08:17 AM

Re: Anyone know what this could be? ...

Thankyou so much for the responses.

I'm so confused by this. My primary symptoms are Dizziness (not vertigo), like a cheap drunk feeling, cloudy head, panic (this is the hardest one to describe), it's like my brain goes into negative mode. Everything seems gray, I cant think of the future etc. It might be related to the dizziness, I'm just not sure anymore. There is only so much one can take trying to explain to someone how you really feal. That's the problem, it's very very difficult. If someone could just jump into your body for a minute or so (not that I'd wish it!), then they'd know its so much more than Anxiety / Depression / Whatever.

My episodes of dizziness are episodic, worse around mid morning, then in the afternoon. Hardly any in the evening. I don't suffer from loss of energy, I am still working full time, my primary symptoms are dizziness, anxiety (panic), blocked ears, stomach problems (recent - after 2 years).

Does anyone know if this sounds like M.E / CFS? I'm still not convinced. I've seen an immunologist (along with hoards of other specialist). The only thing he came up with was house mite alergy (which loads of people have?).

He made a Dx of CFS based on symptoms (Is this not dangerous?). I think when I found this out, it made me worse. It then started the "Have I got it / Haven't I got it" debate in my head.

I think I may have Vestibular Laberynthitus (or Neuronitis), based on a positive Caloric test (put water or air in your ears to make you dizzy). One side did nothing ! Other (Wham!, Dizzy).

PLEASE CAN SOMEONE ADVISE : - Who can I see in the UK for extensive testing? WHAT TESTS SHOULD I BE ASKING FOR? I know there are no Dx tests for CFS/ME, but what are the indicator tests (like NK Cell etc) to show you Could have CFS?

I've had this 'thing?' for 2 years. I cannot stand the thought I might be like this for years to come. Does it get easier? I'm so scared every day, just waiting to be hit by something else!

Take Care,

Mike (UK).

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