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Acute onset of severe symptoms-still no answer 1 year later.

24yr old female. 5'8, 120 lbs. History of MVA 2003 causing peripheral neuropathy, traveled to El Salvadore in 2008 resulting in severe undiagnosed infection-symptoms resolved with Flagil; past surgeries- appendectomy (2001), R hip scope/osteoplasty (2006), gallbladder removed/exploratory lap (2008-looking for infection following El Salvador), tonsillectomy, septoplasty, and sinuses surgically cleaned (Feb 2010). 1.4 cm Pineal Cyst found in 2008, has not shown significant growth and is not presenting as damaging or blocking anything on my MRIs.

About a year ago, I had a flu-like illness (fever, chills, body aches) and I went to an Urgent Care Center and was given TamiFLU, although I was not swabbed for the flu. The next week I woke up to get ready for work, but when I stood up I fell straight to the ground from severe dizziness. My vision seemed blurry and double, I had a low grade fever (100.3F), nausea, and a debilitating headache erupted. A year later, I am on medical leave from work due to a progression of symptoms of the following:

-Headache (pressure behind eyes, back of head)-feels very different than the occassional migraine I have gotten
-Visual problems (episodes of double vision, blurry vision, pain with eye movement)
-Nausea and vomitting (very frequent)
-Fainting (both after standing, after having been standing for a period of time, and sitting down)
-Loss of memory
-Problems with cognition (trouble finding correct words/forming sentences, difficulty learning new things, etc...)
-Persistant low grade fever (ranging from 99.5 F-101 F) -bloodwork is always normal
-Body aches
-Muscle Pain
-Extreme joint pain (no swelling or redness)
-Overall "sicky" feeling

I have also had enormous trouble with sleep-which has just been diagnosed as Narcolepsy with Cataplexy, which could explain some of the fainting spells.
I have had 5 lumbar punctures, which have indicated elevated incracranial pressure (ranging from 19-24 opening pressure), but the CSF fluid all came back clean-0 cell count in the fluid). The headache was temporarily relieved following the spinal taps, but only for about 24 hrs. After seeing 5 neurologists and neurosurgeons, the majority believe it is NOT pseudotumor and are baffled at what could be causing this. I have also seen numerous neuro-ophthamologists and infectious disease specialists.

I am thrilled to have figured out what is causing some of the symptoms, but still haven't gotten any answers for the majority of the symptoms. Are there any conditions that tend to present in patients with narcolepsy? What is the diagnosis for POTS or chronic fatigue syndrome? Those seem to embody a lot of my symptoms. I am desperate to go back to work and get my life back!
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1264596 tn?1271740791
No expert but I had some of the problems you describe.The headaches and migraines went when doctor put me on blood pressure tablets.The pain in the joints sounds like arthritis (I have ankylosing spomdalitis ) yes young people get arthritis!! too. A lot of other symptoms as a result of stress caused by poor health esspecially in someone young like you.Good luck ,keep seeking help, I tried a number of doctors over the years before getting on to one who seemed to understand me.
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Avatar universal
My son has POTS.  Have you had a Tilt Table Test?  Basically if you get diagnosed with POTS, they will try to treat the symptoms but there is no cure.  My son has most of the symptoms you listed, he has never fainted though.  With medications they have been able to get all of his symptoms under control, except the nausea.  We are still working on that one, which happens to be his most debilitating symptom unfortunately.

The autonomic nervous system controls all of your involuntary body functions (digestion, heart rate, blood pressure, body temperature,etc).  My son would have frequent "hot spells", body temp going up.  My son was diagnosed by a cardiologist, but is being treated by a neurologist.  

My sons symptoms started out with GI issues, the vomiting, abdominal pain, nausea.  He has since been diagnosed with gastroparesis.  The autonomic nerves that make the stomach contract to push the food out don't work properly, so food sits too long in his stomach.  POTS can make you ill in so many ways.  
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Avatar universal
Also, a good place to read up on it is  dinet.org
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Avatar universal
A related discussion, NARCOLEPSY-CATAPLEXY AND EPILEPSY after taking TAMIFLU was started.
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Avatar universal
Sorry for my unperfect English : ) I'm french.

I suddenly declared an "atypic" Narcolepsy-cataplexy + frontal epilepsy after taking two pills of TAMIFLU in 2007. My husband was ill, and our family doctor recommanded me and my baby to take the same medecine otherwise we should also catch the "bad" flu.

I took two pills of TAMIFLU and fell down at my office, unanimated but not unconscious, unable to move, prisonner in my own body. Till this day, I couldn't help falling down 10 to 15 Times a day, being sleepy all the day long, being paralysed when I Wake up in the morning. Several nights I also experimented tonic-clonic epilepsy seizures and insomnia. My life would never be the same till then.

I was misdiagnotised the first time, since I didn't carry the "HLA specific type" confirming a typical narcolepsy. But the cataplexy attacks were so specifically that I obtained to be recieved in a sleep-center to check my sleepness architecture. The results were shortly confirming the diagnosis of Narcolpesy-Cataplexy in its nontypical form, "secondary type" as in rare cases as following a trauma, and also the diagnostics of frontal epilepsy, my epileptic tonico-clonic seizures happening especially at night or as following a cataplexy attack a few after the falldown of my enture body.

I precise I did NEVER had seizure or epilepsy crises before the day I fell down after taking TAMILFU.

At the RMI, I was detected an "intrasellar arachnoidocele" which could explain the survenience of my symptoms. It's sudden appearance might have been a side effect of TAMIFLU which is now known to rich (oseltamivir substance) the blood-brain barrier and cause irreversible dammages to brain.

As a conclusion, TAMIFLU appeared to be responsable of a "medecinal intoxication" causing the narcolepsy-cataplexy I suddenly suffer since then.

Several Years after, we hear about narcolepsy cases caused by the massive H1N1 vaccinations... But what about me, am I the only one case declared by TAMIFLU and its molecule oseltamivir ?

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