Ok so after my recent post about the NDT seeming to do nothing to help and the mass of supplements I've been taking ( seemingly at wrong doses or unnecessarily) I came to a huge decision.
I've literally stopped the lot! I can't get any help from my doctor as I've tried and he's useless and now my head feels like it's going to explode with everything I've been trying to do, all the money I've spent and still feeling no better. In fact a year later and I feel worse.
I have had a suspicion for a long time that I have low stomach acid as I have reflux almost every day, even on an empty stomach. I suspect that this could be caused by the Modafinil I have to take for Narcolepsy. As a test I have also temporarily stopped that medication and while part of me prays it isn't that medication causing the reflux as I desperately need the stuff to function, I sit here with reflux so bad my throats is burning all the way to the top and I feel really sick. I have to figure out if I have low stomach acid and if I do, treat it and stop what is causing it. I have begun the baking soda test this morning and had absolutely no belches or anything so I will do a few more mornings and see what happens. If I have low acid then I will get the correct supplement for it and begin from there.
Can anyone recommend a good Betaine and Pepsin supplement?
I'm also going to get another private test done for the complete thyroid function and see what that throws up.
Has anyone gotten to the point where you are so down with it all, wasted so much money and spent so much time on this that you literally feel like giving up? I'm there! I'm about to buy more supplements with the same hope that I had with all the others - that I will finally feel better. I'm not even asking for feeling great, just better than this will do.
Sorry to rant on, I have no one else to speak to about this. My husband is amazingly supportive but I think you have to experience this sort of thing to truly understand it so I really don't say much. My doctor has made me feel like a hypochondriac too which is another reason I don't go to him so it's made me feel like other people think I'm just looking for something. Doc says I should just accept it as part and parcel of fibro and narcolepsy but the more I think about it the more I am convinced I got like this after beginning the Modafinil 16 years ago.
TBH I feel amazingly let down by my GP. I moved here six months after the Narcolepsy diagnosis and this Modafinil was supposed to be a case of "see how you go on it" with other options available if necessary. I told this doctor I was supposed to see a neurologist for several months until we settled on the right meds. 16 years later and I'm stuck on this Modafinil because the doc insists there are no neurologists available here. He also refuses to give me anything for the fibro because of the Modafinil as he doesn't understand what could interfere with it and doesn't want to put me on what would effectively be uppers and downers. That's cool, but for 15 years I've been struggling on with NSAIDs and now the Ibuprofen seems to be making my asthma worse ( though people seem to look at me like I have two heads when I say it)and so I can't even take that. The joint pain is awful.
Sorry again lol. I have a tendency to run on.