26th March 2008
I've posted here a few times but Im getting really really desperate and have no idea whats wrong. I'll try explain everything as best I can in hope that someone can at least give me some insight or advice on what to do next.
History
-Since age 16 (now 19) ive had occasional (2-3 times a year) dizzy/lightheaded spells - sometimes resulting in fainting..others just near fainting. Had various blood tests done but nothing showed up..doctors didnt seem concerned and neither was i because the rest of the time i felt fine.
-At around the age of 16-17 i had a horrible infection that doctors were sure was Glandular fever (mono)..they tested me numerous times but it didnt show up...they eventually relented and gave me antibiotics and i got better (the symptoms were sore throat, swollen glands, fever, fatigue, weakness etc)
-It all started last September with a sudden attack of lightheadedness..slight vertigo...strong feelings of 'things not being real' and that i would pass out..As I said this had happened before but usually apart from feeling tired afterwards i would be fine the next day...after this episode i havent been 'fine' since and have felt constantly woozy/drunk/stoned/lightheaded (brain fog). The intensity varies from manageable (although only because im used to it) and feeling like im dying.
-After this episode i went to the doctor after about 3 days because feelings were not getting any better - doc said it was an inner ear infection gave me stemetil
-Went back after about another week with awful fever..she said must be bacterial so gave antibiotics.
-After about 4 days of feeling like i was dying and awful fever the fever went and felt a little better..except for the dizzys which didnt change
-Since then ive been through 4 more courses of antibiotics which get rid of the fever and ill symptoms but not the dizziness for a few days/weeks.
-I got referred to an ENT..he said it sounded like BPV but that my other symptoms didnt sound like they were in his field so suggested i go see an infectious disease doctor.
-Went to see an ID doc...tested me for everything you can think of (listed below) and gave me ECG and CAT scan of head & ears...showed nothing except raised white blood cells & CRP..indicating infection but not where.
-Now on 6 week course of Augmentin...so far fever has gone away for longest it ever has but head/dizzys no better at all..if not worse??!
Current Symptoms
-Brain fog as described above
-Vertigo
-Occasional nausea
-Fever (when not on antibiotics)
-Cold hands & feet..and clammy
-Almost always cold (even when no fever)
-Occasional episodes of near fainting..seeing stars/flashing lights.
-Headaches..different than usual..at least twice a week...is more of a dull ache with nausea..woozyness..and general malaise..sensitive to light (migraine?)
-Pressure in head and behind eyes
-Eyes always feel out of focus/jumpy vision..dry/strained eyes
-Constant derealisation
-Sleep disturbances (sleep paralysis? wake up in night with intense pressure on chest..unable to move/talk etc..bit of a weird one i know!)
-Probably about 50 other things im forgetting or dont think are significant..these are the main ones though.
Tests
These are tests that i know of and can remember her telling me..im sure there were more as 10 tubes of blood were taken
-HIV
-Hepatitis
-Lyme Disease
-Various less common types of pneumonia
-Throat swabs due to vesicles in throat (dont know what they tested for but were negative)
-Hormone imbalances
-Thyroid
-General blood test (with glucose, lipids etc etc)
-CAT Scan of head & ears
-ECG
-Blood cultures (dont know what for)
-Tests for autoimmune disorders e.g. Lupus
Results
All negative apart from increase in white cells and raised CRP.
Also had protein in urine but obviously not significant as nothing was done
Im due to see both my ID doctor and ENT on the same day next week. Because my fever has gone and ill-wise im a little better im afraid my ID doc will not do anything further to help me...but my head symptoms are still no better after 6 months. My Ent didnt seem to have much of a clue so not much hope there...i just dont want to be dismissed next week and told to 'wait it out'...how can anyone tell me it will go away when they have admitted they dont know what it is..apart from 'some kind of infection'!
Like i said any advice on what to do next would be much appreciated..and also appreciated if you read through all this!
History
-Since age 16 (now 19) ive had occasional (2-3 times a year) dizzy/lightheaded spells - sometimes resulting in fainting..others just near fainting. Had various blood tests done but nothing showed up..doctors didnt seem concerned and neither was i because the rest of the time i felt fine.
-At around the age of 16-17 i had a horrible infection that doctors were sure was Glandular fever (mono)..they tested me numerous times but it didnt show up...they eventually relented and gave me antibiotics and i got better (the symptoms were sore throat, swollen glands, fever, fatigue, weakness etc)
-It all started last September with a sudden attack of lightheadedness..slight vertigo...strong feelings of 'things not being real' and that i would pass out..As I said this had happened before but usually apart from feeling tired afterwards i would be fine the next day...after this episode i havent been 'fine' since and have felt constantly woozy/drunk/stoned/lightheaded (brain fog). The intensity varies from manageable (although only because im used to it) and feeling like im dying.
-After this episode i went to the doctor after about 3 days because feelings were not getting any better - doc said it was an inner ear infection gave me stemetil
-Went back after about another week with awful fever..she said must be bacterial so gave antibiotics.
-After about 4 days of feeling like i was dying and awful fever the fever went and felt a little better..except for the dizzys which didnt change
-Since then ive been through 4 more courses of antibiotics which get rid of the fever and ill symptoms but not the dizziness for a few days/weeks.
-I got referred to an ENT..he said it sounded like BPV but that my other symptoms didnt sound like they were in his field so suggested i go see an infectious disease doctor.
-Went to see an ID doc...tested me for everything you can think of (listed below) and gave me ECG and CAT scan of head & ears...showed nothing except raised white blood cells & CRP..indicating infection but not where.
-Now on 6 week course of Augmentin...so far fever has gone away for longest it ever has but head/dizzys no better at all..if not worse??!
Current Symptoms
-Brain fog as described above
-Vertigo
-Occasional nausea
-Fever (when not on antibiotics)
-Cold hands & feet..and clammy
-Almost always cold (even when no fever)
-Occasional episodes of near fainting..seeing stars/flashing lights.
-Headaches..different than usual..at least twice a week...is more of a dull ache with nausea..woozyness..and general malaise..sensitive to light (migraine?)
-Pressure in head and behind eyes
-Eyes always feel out of focus/jumpy vision..dry/strained eyes
-Constant derealisation
-Sleep disturbances (sleep paralysis? wake up in night with intense pressure on chest..unable to move/talk etc..bit of a weird one i know!)
-Probably about 50 other things im forgetting or dont think are significant..these are the main ones though.
Tests
These are tests that i know of and can remember her telling me..im sure there were more as 10 tubes of blood were taken
-HIV
-Hepatitis
-Lyme Disease
-Various less common types of pneumonia
-Throat swabs due to vesicles in throat (dont know what they tested for but were negative)
-Hormone imbalances
-Thyroid
-General blood test (with glucose, lipids etc etc)
-CAT Scan of head & ears
-ECG
-Blood cultures (dont know what for)
-Tests for autoimmune disorders e.g. Lupus
Results
All negative apart from increase in white cells and raised CRP.
Also had protein in urine but obviously not significant as nothing was done
Im due to see both my ID doctor and ENT on the same day next week. Because my fever has gone and ill-wise im a little better im afraid my ID doc will not do anything further to help me...but my head symptoms are still no better after 6 months. My Ent didnt seem to have much of a clue so not much hope there...i just dont want to be dismissed next week and told to 'wait it out'...how can anyone tell me it will go away when they have admitted they dont know what it is..apart from 'some kind of infection'!
Like i said any advice on what to do next would be much appreciated..and also appreciated if you read through all this!