Skip to main content

Too tired to even be frustrated

I emailed my new neuro about my unpleasant topamax side effects and got a rather brief response. Granted the reason I emailed him was because his office said he was busy, still... the response was a bit frustrating, lacking and a tad depressing. I mean since I have seen him I have not seen improvement, I have gotten worse due to side effects and of course the lack of a rescue med has not exactly helped the situation. And then there is the whole vertigo getting worse on me as well. So with the side effects being very unpleasant it has been no freaking walk in the park for me.

I guess I expected some sort of definitive plan B. After all there are preventatives I have not tried. I know of them. I have heard of them. They Exist. Go ahead and name a few and I'll jump on one. Any of them. I'm freaking desperate here. He just said given my 'lack of response to meds' (notice the plural there, as though commenting on all my history with meds as if I have conquered them all and there are no more to take) he says he hopes I have taken his advice to stop smoking, exercise, stop drinking pop and stop using painkillers. Those would be the important lifestyle changes. Obviously the exercising I was doing stopped... due to getting progressively more ill, more pain and the increasing vertigo. So I have to try and start that again somehow. I stopped the caffeine, but when I have a migraine I do still have one cup a day sometimes... hoping it might actually help. I stopped the painkillers, which obviously I was not using much of and obviously has not helped, but the remainder of my script I have saved for my horrific hormonal migraines because that pain is not the sort of pain I can tolerate beyond three or for days without becoming desperate for at least a few hours of deceased pain levels. I have not stopped smoking, I was waiting to feel a little better to go for that... and when i felt significantly worse well I just did not want to then... it is a stress relieving, when you can do nothing for the pain I smoke. I might try decreasing just for the hell of it, not like the pain is going anywhere at this point. Anyway with the pain as high and constant as it is I don't think he realizes that all these changes, like the exercise, are literally torture... how can that help? And lifestyle changes are not things you just do overnight anyway. You need to do them in steps especially when you are in a crapload of pain. Give me a god-damned break already. And I was doing quite well thank you very much until side effect hell screwed it all up. I had a routine going on. Sure it was insignificant in his eyes, but it was major in mine. Shot to hell.

I'm not sure why he did not mention another preventative medication. Or that we should discuss options? Or something? With chronic migraines it is insane that I would not be on one. And the thought that there is no option for one is not a good one. I know that isn't right also so why do I keep getting neuros who say that? Unless for some reason those medications I know about I cannot take for some reason I am not aware of. Anyway, I'm in a boatload of pain right now and I guess his lack of ideas is rather depressing to me. It shouldn't be but it is. It is not like the topamax was working, so nothing is going to be the same... but I just thought he would have other ideas. He did mention something called Gammacore but it looks like a nerve stimulation device or treatment which would be a great therapy along with a preventative treatment... but by itself I can't see it being all that extremely effective. Might help with all the extreme neck pain though. At least it isn't nothing nothing. 
Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

When I say I am good

When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons. 

I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…