Yesterday was day 2 off of the steroids and I can really feel it! It is not so bad yet as it was when I went off of them finally in 2005. I was on them so many times and so long that I am very familiar with the side effects and can anticipate how they will make me feel at each point. As such, I am granted the opportunity to plan accordingly to schedule maximum productivity and periods of rest. The first week of course is good and was some relief from the trigeminal neuralgia. I started taking 4 mg a day on September 11th. I took this dosage until the surgery when they increased the amount which I am unsure what I took the week in the hospital. I have to get all the records from them when I visit for my follow-up appointment in Portland next Tuesday. Since coming home, I have been on a steroid taper (that means they gradually decrease the dose until I stop).
Here was my taper schedule for those of you who will also need to take them for surgeries:
Decadron Taper Instructions (a nice sheet they typed up for me with large font which made it easier to read and follow)
4 mg dose at 5 pm 9-28
4 mg every 8 hours for two days
(starting 9/29 at midnight)
2 mg every 8 hours for two days
(start 10/01 at midnight)
2 mg every 12 hours for two days
(start 10/03 at 0800)
2 mg once a day for two days
(start 10/05 at 9 pm)
I would highly suggest organizing things and delegating someone to record and keep track of your meds. When you first come home from the hospital things can still be confusing. I got really frustrated and needed help. It is EXTREMELY difficult to write after the brain surgery and you may have vision problems that make it hard too. I did my best to record things by hand which took a long time. Today I finally noticed that my handwriting is improving if I write very slowly and print. I am sure nobody but me can read my notes each day and I will have to type them up. I still cannot write well at all and hence my delay in writing thank you cards to people. I am not sure how long it is going to take to be able to write again and this week an NF2 friend reminded me that I am probably going to have to work with an occupational therapist.
Anyway, I am sort of getting off on a tangent. What needed to happen after 2 or 3 days of me trying to record stuff on a notepad is that Harley had to come up with a system that was easy for me to follow and keep track of my meds each day. With my frustration he did some very quick thinking and developed another binder to keep things in where I would open to the page for the day of the medicines and times I needed to take them. I would wake up, eat breakfast, take the first medication as scheduled, record my weight for the day and food eaten with the medicine, and then jot down any notes on the back of the sheet (a regular 8 by 11 sheet of paper). When I took the medicines I checked them off with a red pen and also recorded my notes with red pen (distinguishing it from the black writing and making it easier to read and glance at). We developed this on the fly but if you can, it would be ideal to have someone create a computer template of what you need to put in the binder (it is neater).
It would be better to type out your notes or have someone do it for you. However, I think it is important to write something everyday so that you can see your progress with your handwriting and also practice. It is going to take practice to get the coordination back. My surgery was on the same side as my dominant hand which is weak. Hence, my handwriting has been affected. It was also affected after the cyberknife treatment in 2004 which has taken 3 years for me to improve but it was not as bad. This time will take lots of work. Fortunately, I am able to type and find it easier.
What I would recommend is NOT handwriting your important notes such as meds, food, weight, any problems, how you feel, etc. All of that is crucial for looking back and tracking your progress. If you can type, type it out and put it in the binder. What you write is maybe practice copying something from a book. Maybe you can try to write the same thing everyday so you can see how you are improving (I just thought of that and will have to start tomorrow).
In addition to the notes I mentioned above, I added print outs of any emails I wrote that day or IM messages providing an update on how I was doing. You will want to look back at this later. Further, I typed up tasks lists of things to accomplish each day which are also good for looking back to help you remember what you did that day. There was one day the power was completely shut off from 8 am to 6 pm. I did not know until it went off at 8 am. Then Harley showed me the letter from the electric company. I added the letter to this binder also for a couple reasons a) to keep track of the day b) for future reference if it happens again and who to contact as it could pose a complication in the future (there is a contact if doing such will cause a danger….think of a person on a respirator who needs power).
Side Effects
I was on the steroids just the right amount of time. The bad side effects happen after taking them 3 weeks. I started on September 11th and ended on October 5th which is 3 weeks and 3 days (the sweet spot). Hence, I was able to get a mild relief to the trigeminal neuralgia (still had episodes but not as severe as the first couple) until the surgery the following Monday. After the surgery I was able to be on them to reduce the swelling in the brain for the second week and the third week I felt well to accomplish what I needed to in order to rest for the 4th week. It is all about timing which is really important. The steroids MUST be taken on schedule and at the correct times. You don’t want to miss a dose or take them haphazardly. I know all this from taking them repeatedly in 2004 and 2005. When you take them longer it really starts to toy with your body and the negative side effects come out. Then going off of them is very difficult and can result in a real drug withdrawal just like an addict has (not fun).
My side effects are pretty mild this time but did start to show up right when going off.
Side effects-
- easy bruising which has occured since the beginning of taking them
· Swelling of puffiness of the face (which this time isn’t too bad as I look younger without so many wrinkles :o) )
· With the swelling of the face is facial soreness from being swollen and the feeling like you are a chipmunk or have cotton in your jaw
· Acne on the shoulders and back as well as the face (mostly chin area)
· Rutty and rough skin on the face
· Gas and bloating
· Heartburn which came out today after eating indian food
· Extreme dry mouth (appeared Sunday and has become enhanced; need to keep a water bottle with at all times and use biotene fake saliva)
· Dry skin (hands and feet) started a week or so ago. I use skin repair lotion on the hands and body butter on the feet from Bath and Body shop.
- Cuts developing on the hands and fingers which began last week and are healing now that I am off the steroids.
· Lack of sleep I have experienced since the surgery. I am very tired today and yesterday which is probably a combination of not getting rest for 2 weeks and coming down off the steroids. I remember being really productive on the steroids which I was able to accomplish last week. I planned it out that way with the intent to rest during this week. It is still taking some time to come down where I can get at least 5-6 hours of straight sleep and reach REM. Hopefully that will happen tonight after I finish this. Thus far I think the record is 3 or 3.5 hours of straight sleep before waking again. I take several small naps.
With that it is time for me to hit the hay and try to get some rest.
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