hi I am a 27 year old female I have recently had an eye test and have got papiloderma I was admitted to hospital for one week due to serve headaches which have lasted for over a month. I had a MRI and CT scan and also a lumber puncture done which all came back clear.I have been home for 1 week and have tingling in my both of my feet and heavy sensation in my shoulders and back and feel like I cant lift my head could this be a trapped nerve due to the lumber puncture or a side effect of the new drug they have given me which is called topiramate. the headaches havent gone and are still there and I suffer with constant fatigue which doesn't go away with sleep which has been going on for over 6 months. I cannot go to work due to the pain and constant tiredness. I am due to go back to the neurologist in 4-6 weeks and also to see a ophthalmologist for a visual field. would you have an answer to what it wrong many thanks Charlotte
Hi There. Did your eye doctor diagnose you with papilledema? What was the "opening pressure" during your lumbar puncture?
Hello I originally went for an eye test due to the headaches and was told that I had swelling behind the eyes then I was referred to Southend eye hospital they done several of there own tests and booked me in for a MRI scan for the 26th February. I then got admitted to hospital on the 10th February due to the headaches and I had the MRI and CT scan and the lumba punture which score was 20 when it was done then went down. 16
. When I was released from the hospital it said on my discharge papers that the opthalmologist at Southend hospital found the papilodema but I wasn't aware of this until I saw the papers. I have got to go back again to see another ophthalmologist and also a neurologist in 4-6 weeks.
Perhaps you have a condition known as "pseudotumor cerebri". This is a condition in which the pressure inside the skull is increased and can cause papilledema. The brain is affected in a way that the condition appears to be -- but is not -- a tumor.
This condition occurs more often in women than men, especially in overweight or obese women. The cause is unknown but is often related to hormonal abnormalities or pregnancy.
That is what the drs tested me for at the hospital when I was admitted last week when they done the lumba punture but it came back all clear for that
I can cope with the headaches its the extreme fatigue which is starting to ruin my life and ive had it for over 6 months now I work full time and I'm starting to struggle with going to work as all my brain seems to want to do is sleep. My aunt was diagnosed with Myalgic Encephalopathy over 20 years ago and every systom that I have she had when she first diagnosed. I know that it isn't hereditary but I just want to find out what is wrong with me and get my life back as I can't go out with my friends dancing anymore as I haven't got the energy I'm getting married next year and I haven't got a sex drive at all because I'm always so tired and worn out. My memory is starting to also be effected I really dont know what to do no more
Hi Charlotte. Have you consulted with a rheumatologist? Auto-immune or auto-inflammatory conditions (including ME/CFS) can also cause these types of symptoms. A work up may be in order. In the meantime, if you feel the topiramate is not working and may be slowing you down, ask your family doctor or neurologist if you can taper off of it to see if your energy level improves. There are other possible medications that can be used to control headaches.
Did you have any follow up questions about this?
No that's everything thank you very much for your advice.