"Suffering the Slings and Arrows of Outrageous Fortune"

We saw the pain doctor on Thursday. He wants to try Em on amitriptyline – to help with her sleep and pain. He wanted her to have an EKG before he prescribed it. So, since her appt with the pain clinic was in the morning we drove to Reid Hospital from Cincinnati so we could get the EKG asap. It was a very long day for Em – she had had her joints bent and twisted during the exam, not to mention getting up early after very little sleep and dealing with the ever present headache. But it had to be done and we figured we may as well do it right away rather than wait.

So, we got the EKG and I called down the next day and gave the nurse the number to call to get the results [note: it is rather inconvenient to deal with 2 separate hospitals and to be the go between!] Called again late Monday afternoon after not hearing anything. Playing a bit of phone tag Tuesday morning, but finally got word that the EKG was normal and she could start the ami.

She got to take it last night for the first time and eliminate the flexeril and tramadol from her list of meds. Started with 10 mgs but may need to titrate up until we find the optimal dose.

Em was not optimistic at all – it made her dizzy, but that is nothing new. She was convinced that she was going to lay awake all night. She kept saying she wasn’t sleepy, so at 12:30 I said we needed to turn off the light. (We need to use this opportunity to adjust her sleep cycle so we may have to bite the bullet here in the beginning.) She laid there and tossed and turned and huffed and puffed, complaining that she was never going to get to sleep. Then by 1:00, she was snoring!

I am not going to get too hopeful because she has typically reacted well the first couple nights to anything to help her sleep, then it quickly stops working. BUT, I am hopeful that we can work with the dosage to make this a real option for her. This is a very standard medication used with EDSers – it is an anti depressant but it is most helpful for helping with sleep issues. It also can have a slight effect of helping with pain levels, especially as it builds up in the system. A side benefit can be a lifting of mood since it is an anti depressant but at such low levels it probably won’t do much in that area. However, any help it gives will be gratefully accepted!

We will try this dose for a few days and see what happens. If it helps, we will continue at 10 mgs. If not, I can call and they will bump up her dose. This is one of those meds that can take up to 4 weeks to really see the full benefit, so we have to be a bit patient. But, she got a decent night of sleep so that is definitely a step in the right direction! I will wake her up in a little while [working towards that better sleep schedule] and see how she feels. She very possibly will be sleepy and groggy through the day until she gets used to it.

So, so far so good and we will just wait and see. I am very excited about the prospect of real pain and sleep relief – this is what hope feels like! The pain relief is ‘only’ a year late but today, I am just grateful that it finally is within reach.


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