I hope everyone had a wonderful holiday! I was contacted by another acro friend and it made me realize I haven't posted in quite a while due to the holidays and all (that and my extreme laziness lately!). It's been nice to email with people and learn their stories, to know we're not alone in this. I feel horrible for not following up with everyone like I should. I just don't seem to have the energy lately. I don't stay on my computer more than an hour or two a day now.
My health has been very good lately though. I've been receiving 40mg of Sandostatin (one injection on each side now) for almost 3 full months. I go back to see my endo on 3/3 when it's been 4 full months of the 40mg, and I'll probably have another MRI in April. My MRI's have been excellent, no regrowth. I think my theory of TMJ may have been off. I got a night guard but haven't worn it. But since starting the 40mg of Sando my headaches have dropped off significantly. I'm so happy that I no longer have daily headaches. I do still avoid things that seem to trigger the headaches though, like opening my jaw too wide, and wearing my hair in a ponytail. I think reading books may be causing me headaches as well. I'm an avid reader, and I always hold my books in my left hand. I noticed the muscles of my left shoulder all the way up to the back of the left side of my head are always very sore and tight. I'm trying to adjust how I hold my books now to see if that helps.
The fatigue is always with me though. I did have a very nice holiday, and I did have fun. But going through the holidays depressed me a little because socializing seems to tire me very quickly, having to concentrate so much on what everyone is saying and to prepare my replies carefully. It's much harder for me than if I were allowed the time to compose my thoughts in writing. The holidays made me conscious of just how much I didn't interact with others, as opposed to how much I used to before the acro. I felt like so many times I was very quiet, and basically felt like an observer, letting all of the conversations flow around me but not contributing, watching as if I were outside my own body. I try to stimulate my mind by reading and playing games. But when it comes to making conversation I'm never able to recall as much as I'd like, and therefore I'm not able to contribute as much as I'd like. I can't remember so many things from my past, things I learned in school, things I should've remembered even about important current events that I've lived through. I wonder how much of it is age (I'm turning 32 soon), and how much is the acro. I notice my hair is graying already and I'd like to blame that on the acro too haha :-)
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4 comments:
Hello!
I've been following your blog for a long time and it's good to see you posted an update! I'm glad your MRIs show no regrowth, that's excellent news!
Regarding headaches: before my surgery I had headaches, nearly everyday, and very, very strong. After surgery I only have headaches when I have a sore neck or when I am wearing a pony tail for too long (I thought I was the only one! but at least we are two pony-tail-headache-sufferers!). As my surgery went very well, I think I can assure you that those things you mention that trigger your headaches have nothing to do with acro!
Regarding your interaction with other people... well, may be it's because in Christmas you have to meet people you've not seen in one year and it's difficult to find what to talk about once the weather conversation is over. Anyway, all people change and become more quiet or more talkative... and not all people have acro! :)
Hi Jenny!
Glad to see that you are posting again- I missed you!
I wonder if the acro really is causing the fatigue? It seems that the sando is helping your other symptoms, so I would think the fatigue would have been helped as well.
I was having a bit of a rough time a while back too, but now that the sun is staying up a little longer things are getting better. I hope your fatigue lifts!
PS I have to be careful about hair and headaches too! I have the pony tail problem, and once when I wore a headband it almost ruined my day before I realized that it was causing my headache!
I think your fatigue is related to acromegaly, I had my operation 7 years ago, and had radiotherapy, I believe it is the radiotherapy that has caused my fatigue as I was really good after my operation, but gradualy after radio I have become more and more lethargic. My first testosterone replacement therapy caused me to be unable to move, everything was difficult for me. I am now using nebido and it seems to be OK however I have heavy fatigue and each day seems to be a battle to stay awake and active.
I'm sorry to hear that Vernon. Dealing with constant fatigue is so hard. I never had radiotherapy though. I started on the Sandostatin LAR a few months after surgery and that seems to be keeping things in check.
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