Review 1, UK, reddit
December 2015 I got a sinus infection and never felt the same ever again. I was told it was depression and anxiety for a long time. I went doctor to doctor but no one could help. I was eventually diagnosed with chronic fatigue syndrome and tachycardia. We thought it was POTS for the longest time. Ive had over 900 appointments and over 675 tests in the past 2 years. I experience dizziness, high heart rate, low blood pressure, unbearable sleepiness, vivid frequent nightmares, sleeping a long long time but still having dark circles under my eyes and pale, cold hands, always cold and heat doesnt bother me at all. I was recently diagnosed with narcolepsy and fibromyalgia. I was put on 400mg of modafinil per day. I had to stop taking it for a bit because it gave me tics. Now i take it in a lesser dose unless i feel really bad. I still sleep a lot and fall asleep randomly. Also i half sleep where i just stare off into space but im still listening. I have random muscle weakness sometimes where I drop what ever im holding. And sometimes i just feel like im gonna collapse even if im already sitting or laying down. My boyfriend tells me i sometimes start dreaming with in minutes of falling asleep cause ill squirm and claw at things cause of a nightmare. I also say weird things like tell him theres a ghost or an alien im sleeping with my eyes open usually and that happens within minutes as well. Sometimes he tries to wake me up and he will yell and shake me and sit me up but im dead asleep. I dont know what i should do for a job. I wanted to be a ballet dancer, i was dancing with the cleveland ballet. Ive had to give up all my dreams and now im just thinking about doing art since i cant let people down at a job. I really dont know what to do tho because im afraid itll get so bad i cant leave my house or even my bed
Review 2, UK
I currently have a diagnosis of severe idiopathic hypersomnolence rather than narcolepsy. My sleep study and mslt was conducted on full meds, some of which suppress REM sleep so I am awaiting another study off medication to see if the results alter. In the meantime though, by the end of the 4th mslt, my latency was just 17 seconds, so a 5th test couldn’t even be carried out. Regardless of the “official outcome” of the tests I have been told that the treatments for both conditions are pretty much the same anyway. My neurologist has asked my GP to prescribe Modafinil for during the day and also Pregabalin (which will also hopefully help with my Fibromyalgia). He prescribed the Pregabalin without a problem but refused to prescribe the Modafinil as the “new GP rules” state that hypersomnolence is an “off label” usage so the neurologist has to prescribe the first time and he will then represcribe. Likewise the neurologist said the same thing the opposite way around. In the end, while they argue it out, I buy it off a reputable online GP and paid £40 for 30 tablets. I have given them my history and they have despatched without issue. Hopefully my GP will now re-issue as someone else has done the first prescription. My main worry now though is that obviously this is a stimulant type of medication. My night-time sleep is already ridiculously poor and my lovely Jawbone UP3 (which has been very accurate so far) is recording my “deep sleep” at between 40 mins and 2.5 hrs a night and it is recording between 1.5 and 3 hrs of REM sleep per night (which the doctors say I don’t have any of)……..after all that waffle…….
– Diagnosed with Narcolepsy (on 200mg of Modafinil)
– Diagnosed with Osteoarthritis
– Diagnosed with Fibromyalgia
– Diagnosed Vertigo/Tinnitus
– Severe Vitamin D deficiency (currently having 6 monthly injections to keep my levels ‘normal’)
– Cleared of MS as my MRI showed no plagues on my brain
– Cleared of Rheumatoid Arthritis as my blood test came back negative (although this test is only 80% accurate)
– Re-checking thyroid as my levels have just dropped into a ‘Overactive’ area (only just), blood test next week
So I was referred to a Neurologist a few weeks ago to have a full EEG. The reason for referral was an increase in my tremors, internal twitches, worsening of my memory and vaguing out during conversations (there are more reasons/symptoms, but I’m trying to keep this shortish, ha)
So the EEG came back clear… No mini brain seizures! I’ve now been referred to a psychologist to have memory testing done, as my Neurologist believes it could be early onset Parkinsons’ Disease.
Physically my brain is in perfect health according to my Neurologist, which I’m relieved to say the least.
Unfortunately it means further testing, which is so frustrating, but I’m heading in the right direction.
A positive is that my Neurologist said that I don’t have any Psychiatric conditions, so I was quite happy to hear that I’m not crazy, haha.
I’m seeing the Psychologist mid June, so I’ll keep you posted. My best friend has been begging to take me to see her Naturopath, so after years of saying no, I’m seeing the Naturopath this Thursday, haha. Blood tests next week for my thyroid and I’m getting a total hip replacement in July.
Happy to know that by the end of this year I’ll have a few things cleared or confirmed, which is the beginning of a new story.
This 29 year old sleepyhead is feeling very optimistic. xx