Since falling out in 2018, many doctors have tried many things in an attempt to help my remaining difficulties. The worst one is the persistant fatigue. I was prescribed Modafinil by a neurologist. It took almost 2 months for me to finally get the prescription filled. The federal government insurance would not cover it, nor would my state issued insurance. Ironically enough, I must pay an insurance premium AND pay for the optional "PART D". All were of no use whatsoever. It turns out that a mere 60 pills cost about $1500!! Some time later, I tried to use the free "GoodRX" card that I got in the mail. Turns out, my cash price went down to $38 using this free card!! So after jumping through firehoops, I finally had the pills!
I was supposed to take 200mg consisting of two seperate 100mg doses taken 8 hours apart. After a visit with my Primary Care Physician, I decided to start at 50mg and take it from there. I took 50mg for one week and did not notice any miraculous changes. I developed a curious dull headache that was exactly like what I felt when getting out of the hospital in 2018. When week number 2 started, I went up to 100mg for 2 days, then went back to 50mg. 100mg proved to be a very bad thing for me. I ended up staying awake for about 26 hours, all the while in a stupified "zombie mode" of sorts. After getting back to 50mg, I did not stay awake as long, but was still a sort of zombie. Anxiety levels were elevated, and I experienced some hyper-active brain activity. Although I could physically stay awake, the fatigue did not change.
Today is day number 2 of not taking any modafinil. I slept for about 12 hours! When I woke up, the fatigue was still there as usual. However, the hyperactive brain was finally at peace! I did things at a more relaxed pace, and my inner peace was restored.
So I will not be using this expensive med any more. It reminded me of how I felt back in the college days while staying up for 2 days at a time. I would not want to go through life feeling like that!
Giving it some thought, taking the Modafinil made me stay awake longer than my body wanted to, and produced some of the same uncomfortable brain problems I had when I first got out of the hospital.
If my brain/body was controlled by a 20 amp circuit breaker, the Modafinil was like someone holding the switch so it couldn't trip, and then forcing 30 amps or more to flow through the circuit! Bad things can happen to wiring if one does that, and I feel like the same thing was happening to my brain/body.
I have told others that sometimes we must "play along" with regards to going to doctors' appointments we suspect will be a waste of time, and that the jobs of the doctors were to try to find the correct puzzle pieces in order to try to cure the puzzle that is encephalitis. Well, as folks in the UK might say, "This piece goes right into the rubbish bin!!!"
However, at least we eliminated this piece, no harm was done, and this information is documented so as to sustain my SSDI claim.
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OldGnome
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Hi OG, sorry to hear of your problems with fatigue and medication. It's very frustrating not being in control and command of one's situation. I'm not on Modafinil but am taking about 20 different tablets and capsules a day. Steroids, Thyroxin, Anti-seizure tablets, morphine sulphate and others. I rattle when I walk. Modafinil is described as a stimulant and only available on prescription in the UK - so it might keep one awake and 'buzzy'. Headaches and nausea are to be expected along with a few other delights.....
Fatigue was a massive problem for me when initially discharged but has gradually reduced over several weeks. A walk of a few hundred yards was a struggle with a walking stick and resulted in bed rest for a day or two. Now I can do the same walk (whilst chaperoned) without the stick and don't need the two days rest - just 15 hours sleep!
The Internet is a marvelous help, providing contact with fellow sufferers and infinite opportunity for research (Google) and entertainment (YouTube etc.) Putting my faith in medics and their skills was a big step, but they have brought me back from the almost dead a few times. It was all a bit sketchy and my wife is just pleased to see me alive and semi-well these days.
I suffer from a bone degenerative condition (osteoporosis) which has led to compression fractures in my spinal column. This complicates my exercise routine and I'm on lots of pain relief (morphine, paracetamol and ibuprofen) which brings some reduction. The fractures don't seem to heal and often any movement is painful.
Music is a great mood lifter and reading provides another distraction. In some ways incapacity provides an opportunity for contemplation and mental stimulus. If I make my mind a blank it is soon occupied with random thoughts and speculations. A sketchbook and notebook comes in handy for jotting down thoughts and ideas. make the best of the situation I suppose.
Amazon and EBay provide a shop window for those whose scope for shopping on foot is reduced. I've upgraded and/or bought a few items that make life a little easier.
Just stay clear of Amazon Prime - what a rip-off!
My lack of short-term memory is a big problem - without my wife's help and supervision I would not manage my medication, appointments, meals and cooking. I can wash the dishes and tidy but heavy work has to be done by someone else.
Here in the UK the NHS usually covers the care deficiencies (counseling, mobility etc.) where needed but again relying on others and their assessments can be frustrating. There's usually a long waiting list and you may easily linger at the bottom of a pile (prioritising) and be forgotten
I've been diagnosed as having schizoid tendencies - I don't know who came up with that - maybe it has something to do with my condition after being roused from my 3 day induced coma - hallucinations and delusions etc. I thought the medics were aliens stealing my DNA.
Hello again Gandalf2 and thanks very much for including the picture!
Last night I ended up sleeping for 14 hours which I had not planned on. Today was one of my days to report to my VERY part time work at my old job. With varied difficulty, I work for only 4 hours on Mondays and 4 hours on Fridays. This morning found me already off to a bad start after sleeping longer than I had planned to. However, your picture immediately put a smile on my face and it now resides on my large 32" computer monitor as desktop background!! The setting is so unlike anything here in the U.S.! I had studied the beginnings of "terraced houses" and how they came to be. I believe they are called "2 up, 2 down" housing units and each one has a tiny, but useful backyard which one can raise a garden in. The fact that there is so much green growth there makes a tremendous world of difference, in my opinion. I really am fascinated and even enamoured by the UK! No place is perfect, but there are plenty of great things there to appreciate. Here, I live alone in the middle of the woods in a 1400 square foot house on nearly 5 acres of land! No neighbors mean no possible trouble, present or future! People ask why I don't move to something smaller. My answer is the affordability of the place. Believe it or not, the monthly cost is the equivalent of only £450! This number includes property tax and insurance!
It sounds like your medical difficulties exceed mine by quite a bit, but it is a great thing that you have a wife who stands by you in all times. I can take care of the house and cook, etc but will also "pay the price" the next day by having to sleep nearly 15 hours. As a result I usually only cook once for the week and eat simple lunches such as sandwiches and quick canned items.
I believe we are kindred spirits with our positive attitudes though, which will keep us going! Thanks again for the uplifting picture! I just remembered I have a DVD set of the entire Grace and Favour series from some years ago, which was a spin-off of the original "Are You Being Served". This gives me a reason to set up the TV and rearrange the house here!!
Thanks again, and here's a pic looking out of one of my windows here:
Updating this saga, it looks like I had to reach into the rubbish bin and get the piece of the puzzle out that I threw away!
One week after I stopped taking the modafinil, the "buzzing head" symptoms subsided. Then something very strange happened. For the first time since 2018, I suddenly started to wake up, and stay awake, after sleeping only 7 to 9 hours, instead of the usual 12 to 16! I have been able to wake up this way for over a week now, and I don't know why!
Either it was the modafinil "jump starting" my brain, or it was just coincidence. Wanting to see if I could get any better, this week I am taking the modafinil again and today is day number 5. Unlike the first time I took it, I did not have the "buzzing head" at 50mg. The past 2 days I increased to 100mg and the "buzzing head" is back, but not as bad.
What I don't like about taking 100mg, is that I will stay awake far too long. Yesterday, I ended up staying awake for about 21 hours and spent a lot of time working on home chores/projects. Just very slowly. After staying awake that long, I was once again awake after sleeping only 7.5 hours!
The day before, I spent 2 hours working in the garden, did laundry, vacuumed the floors, washed the dishes, scrubbed the stove/counters down, collected and took out the trash, and wet mopped the tile portion of the floors here. For some reason, like a diesel engine, I kept going and getting things done. Slowly, but moving. I went to bed knowing that I would need to sleep for 16 hours, then would wake up in a groggy mode of fatigue.
To my complete shock, I woke up and got right up to start the day. What was shocking, is that I slept for only 7 hours!!! I have not been able to do that since 2018!!!
I am hoping that I am not experiencing a temporary improvement. I would hate to end up on the negative side of the sine wave, being more tired than ever as time passes. But I am being VERY cautious, and logging times on my dry erase board, etc.
The fatigue is still there, but lately I have been able to do things, just very very slowly. I will see what happens next and post it here. Perhaps my saga will be of use to someone else in the future.
It's been almost 2 weeks since my last update so here's what's happened.
I took the 100 mg per day for one week and then decided to give my system a break. What happened is not very good. For the next few days I ended up not being able to stay awake for more than about 12 hours and slept a lot. 12 hours average sleep per day, then up for about another 12. This persisted for a few days, then I had to go to work on Friday so I took another 100mg to get me through it. Once again, ended up staying awake for close to 24 hours!!
This past weekend was horrible. One of my dogs suddenly stopped drinking water and eating, even her favorite treats. I was sort of a hospice caregiver as my doggie passed away and needed to be awake for a long time. I took another 100mg of Modafinil, and was able to stay awake to take final care of my doggie. So the Modafinil WILL keep one awake for a long time. She passed away on Sunday morning and I finally had to get some sleep. Woke up after only sleeping about 4 hours, took another Modafinil, and got to the business of burying my doggie. I was very emotionally and physically exhausted after that. During this time I replied to a couple of posts here, but had to be overly careful of what I said so as not to offend others who are going through tremendous trials with their family members. So once again, the Modafinil WILL keep one awake, but in a sort of zombie-state and definitely not at one's best.
Today is Wednesday morning and I woke up at 2AM! However, I only slept for 8.5 hours and that is good compared to the previous 15/16 hours I previously mentioned. Not wanting to experience what I will describe as a "Modafinil crash" like last week, I have taken only 50mg of Modafinil today. Will probably do this until the weekend, then taper off completely and then I will report back with what is happening.
Here's the update to this adventure as of 10/7/2021....
After trying various dosages, here's where I'm at:
200mg taken in 2 seperate 100mg dosages proved to be too much. Increased anxiety, dizziness, and faint headache or "buzzing brain".
50mg had minimal effect. Not worth taking at this level.
So I take one 100mg dosage per day at this point. Some days I feel a bit better when I wake up and others I am severely fatigued. Taking 100mg will wake me up after about 2 hours, regardless of how fatigued I am.
What's somewhat miraculous is that I no longer have to sleep for my normal 15 hours or so, per day, plus subsequent daily naps. After 7 to 9 hours, I am waking up and start my day. I have not been able to do this since 2018, when I fell ill.
Very recently, I have had to resume my naps halfway through the day. I have fallen asleep quickly and go into deep "dream sleep" for 2 hours. This disrupts my attempts at having sleep/wake hours that normal people do of being awake for 16 and sleeping for 8, making up a total of a 24 hour day.
Additionally, the hours that I am awake are now not very productive. I have to force myself to do basic house cleaning tasks, and am a zombie of sorts. When I used to sleep the 15-plus hours, at least I would feel like tackling more ambitious projects. Not on a regular basis, but I didn't feel as much of a zombie.
Thankfully, my next round of doctors' visits occurs starting tomorrow with my GP, then another with my hospital neurologists next month. I am hoping we can come up with a better course of action for the future. As the future slowly reveals itself, I plan on posting it here. As I have said before, perhaps it will be of some use to someone else.
Just back from my GP appointment. It looks like the Modafinil can, and has, caused the recent dramatic change in my sleep hours. My brain is trying to "rewire" itself, and a sort of relay has snapped closed, enabling my now-normal sleep hours. The worsened fatigue may fade, but late next month is my appointment with the hospital neurology doctors. Let's see what they think!
It was also revealed to me that during my first 3 days in the hospital, I was in a coma! No wonder I don't remember a single thing during that time!
Hi OG, my fellow E peep. I'm so happy to read that you were able to get off that medication since it wasn't working for you. I relate to what you said about going to docs as being a waste of time; I've had too many of those types of appts after E. I hope the cardiologist I see this week will be my last Dr. appt and will just continue with massage, acupuncture, food for life, physical therapy, and getting plenty of vitamin D. BTW, Still working on Part II
This really helps me- thank you ☺️ I am so focused on staying awake but if I don’t actually feel like I want to be awake then it’s no good and will be more stressful!!! 👍👍👍
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