It’s been a very unsettled few weeks for James and I think there has been a few contributory factors. Thankfully, he appears to be coming out the other side.
Changes in Medication
A few weeks ago, we were having a problem getting hold of James’ usual medication, Pregabalin. His staff in supported accommodation deal with requesting and picking up his prescription when it is due but there came a point where we were almost running out and so, still unable to get it, James’ GP prescribed him an alternative. He has been on Pregabalin for probably 4 years or more and it was prescribed by his psychiatrist for anxiety and behavioural reasons. He’d previously been on a number of different medications which hadn’t helped him at all and he experienced a number of side effects from them. He does seem to be quite sensitive to medication but on Pregabalin he had remained well.
Seizure Risk
Pregabalin is also by happy coincidence an anti-convulsant. Regular readers may recall that whilst James has a history of seizures, he hadn’t had one for many years until one evening last July. This was completely out of the blue. Some months later he was seen by a neurologist who felt whilst it wasn’t the initial reason for him being prescribed Pregabalin, it was actually keeping his seizures at bay and should he ever stop taking it, it would need to be replaced by epilepsy medication. In the absence of Pregabalin, James’ GP prescribed another medication which he felt was a suitable alternative and also an anti-convulsant, Gabapentin.
I was very anxious about James having to change rapidly from one drug to another. As James lives 25 minutes away from me, I spent a morning ringing around lots of pharmacies near to me to see if I could find a supply of Pregabalin anywhere. I drew a blank. Knowing James needed to be on an anti-convulsant, and fearing he would have seizures again if he wasn’t, I felt we had no choice but to switch his medication when we ran out of Pregabalin, but I was really not comfortable about it.
Initial Relief……But It Was Short Lived
I saw James the day after he started the Gabapentin and I was relieved to see he appeared to be his normal self. However, a day or so later James developed a cough. He appeared otherwise well, it didn’t sound chesty and it wasn’t accompanied by a runny nose or any other obvious symptoms. As a precaution because James is mixing with a lot of people at day services his staff tested him for covid. This was negative. Also, during this time James has been having regular sedation in an attempt to do some blood tests. I say attempt because as yet, even with a gradually increased dose we have been unsuccessful because the sedation has had no affect on James.
James’ GP visited with us at his home on the Friday after James started on the Gabapentin. James was coughing then and I queried whether this was a side effect of the Gabapentin. The GP felt it unlikely. He also said that there shouldn’t be any issues with the meds change as it is the same group of drugs.
Medication Differences
I do not have a medical background and so I am not going to say the GP was wrong, I bow to his greater knowledge. But… I have looked up both of these medications and whilst there is some jargon I don’t understand I did find some differences in them as I did the reason for them being prescribed. James’ cough continued and over the course of the next few days he had two more covid tests, both negative. Still, he showed no other signs of being unwell and did not have a temperature.
By the following week James was becoming increasingly agitated and unsettled. His normal sleep routine had gone out of the window, he had two nights where he didn’t sleep much at all. As a result of this he was very tired which of course is not going to help his mood. He was visited by a nurse at home who listened to his chest and said it was all clear but still he continued to cough. James’ periods of distress continued. Things that wouldn’t normally be triggers for him brought about horrendous meltdowns.
For myself and the rest of James’ family this was distressing to see. It’s especially difficult because James no longer lives with us and I am unable to monitor him as closely. I am reliant on information on the app which staff log all of James’ behaviours etc on. I can’t physically go and check on him myself in the middle of the night and see if he is ok. I find that very difficult.
The GP visited again for another attempt at sedation for bloods. Again unsuccessful. James was kept home yet again from his day services for this. Still coughing, the GP sounded his chest, took his temperature etc. All normal. Again I queried whether the cough and the increase in James behaviours was a possible side effect of the medication changes. Again he said it wasn’t. What we decided that day was that we would temporarily stop giving James sedation to try and do bloods. It’s a catch 22, we really need to be doing some bloods for a number of reasons but I felt that James’ body was struggling to cope with the medication changes without even knowing what the effect of giving him sedation every other week was having on him.
Not a Coincidence!
I discussed with the GP switching James back to Pregabalin if I was able to find some. I am happy to say I was able to source a bottle from a pharmacist near to me after a tip off from a friend who had got some there. Two days after stopping the Gabapentin James’ cough disappeared. I personally don’t think that is a coincidence. During the next week James’ sleep improved but he continued to have really distressing meltdowns. On two days he became so distraught when his staff tried to get him to leave his home to go to day service he was kept home because it was felt unsafe to drive him. James’ staff rang me to discuss whether he should go to his day service and in the background he was shouting and crying and clearly very distressed. At times like that I am absolutely torn, my instinct is to go to him and it took everything I had to stop myself doing just that. I knew he was with staff whom I trust completely and who know him very well, he was being well cared for. I also knew that if I went to him and he was calm whilst I was with him, inevitably I would have to leave and it was likely that he would become upset again and the last thing I wanted to do was to add to his distress.
I saw James myself the following day and I am delighted and relieved to say that he was calm and happy. The following two weeks he has attended his day services as normal. He is still really struggling in the car but at home he has been much calmer and his sleep has returned to normal.
I definitely feel that the change in medication has contributed to, if not solely been the cause of, James’ cough, his heightened behaviours and his poor sleep. Who knows what effect the sedation has had on him too. Whilst his staff acknowledge that his normal routine is also crucial to keep everything running smoothly for James, it has been unavoidable that he has had several days at home during the last few weeks due to his lack of sleep, distress, GP appointments etc. Added to that there has been a bank holiday and training day closure at his day service.
I desperately hope that James continues along the path he is currently on and needless to say I will go to whatever lengths are necessary this month to get hold of his regular medication. I just can’t put him through this again, it’s just not fair on him.
