After what seemed like a disastrous first week on Octreotide (which I am taking for postural orthostatic tachycardia syndrome and post prandial hypotension) I am very happy to report the last week or so has been an absolute breeze! No side effects and my body seems more than able to cope on the dose that I am injecting once a day.
I had truly forgotten what its like to eat lunch and then not fall asleep / pass out (losing the whole afternoon), you know like normal people do. I’ve found my rhythm with the octreotide as long as I eat within 30-45 minutes of the injection I have no unpleasant side effects. I have noticed that sometimes it can send my blood sugar levels crashing down and it can on occasion leave me feeling a little shaky but as long as I eat on schedule that is quickly remedied.
On Saturday 26th April I managed to completely balls things up (I am on a learning curve here so mistakes are to be expected). I left it far too long between injecting and eating, approximately about an hour. The effect of this was to drop my blood sugar levels and there just wasn’t enough octreotide in my system to cover me during the digestion of my meal. Blood pooled in my abdomen, dropping my blood pressure and to cut a long story short I ended up sleeping away the afternoon. I was so angry with myself because I had messed things up but not only that when I’ve had an episode like that it makes me feel very ill for several hours afterwards. So my mistake effectively wrote off the rest of the day. It won’t be something I will be repeating in a hurry.
I am writing this on Tuesday 29th April and since Saturday I’ve been better at keeping track of the time. I am getting into a better routine and no longer feel so daunted when it comes to injecting myself. I am now contemplating going back up to two injections a day. The metallic taste has gone along with the weird headache I was experiencing initially. It seems like its the right time to move things forward. I know if things don’t go well I can stop for 24 hours and then restart on just one injection a day.
Its very hard having 90 minutes of near normalcy or improvement for me just once a day. The main difference octreotide has made is not having to retire to bed every afternoon after I have eaten. I am managing to spend a whole day out of bed which has been unheard of for quite sometime. With that though comes repercussions, the afternoon lie down used to let me recharge my batteries if I didn’t have a full on episode. It would give me some energy for the few hours I would see my husband after work. Now though by 4pm I am ready for my bed and I am having more joint pain because of sitting up for longer. I have over the last 12 months lost a lot of mobility due to my health taking a further nose dive. I am beginning to regret having 2 sofas in the lounge and wish sometimes I had got a day bed. I am going to have to start taking some time out of my afternoon to just lie down.
Its also hard dealing with the ignorance of some people who assume that octreotide is some kind of magic cure for me. It helps the PoTS issues but it doesn’t stop the pain from the EDS. It doesn’t stop the fatigue the EDS creates or from the PoTS. There is no cure for either of these conditions currently only treatments and for those of you who have followed my blog over the years you know I haven’t had an easy ride trying all those different medications.
So at some point over the next few days I will be increasing my dose back up to two injections a day. Once I have been doing it for a little while I will update you with how its been going.