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.
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Linac
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I am so sorry you are going through this. Can you find a functional doctor in your area? I was lucky after a year of feeling like crap I found a functional doctor and she was able to diagnose me and put me on the right supplements. She also does really comprehensive assessments of my health and has uncovered other issues that explain a lot of what is going on with my health. I really think it sounds like that medicine is making you sick, and if you feel that way listen to your gut (no pun intended) and search for someone who will help you.
Unfortunately I live in the far north of scotland and cannot move surgeries because we still have the catchment area clause here. Our surgery did have 2 naff doctors but now just has 1 doctor for everyone. Such a shame that after 15 years of living here he hasn't read up on Narcolepsy so that he can actually understand it.
I'm trying to sort this on my own but it's really getting me down because it's so hard to figure out what is causing the issue. Could be the under active thyroid but what is causing that? Could be the reflux preventing me absorbing nutrients but what is causing that? It's just so perplexing isn't it lol.
It's good to hear that you found the help you needed and now have the right supplements, there is hope out there
I bet you could find a specialist that you could skype with. So many doctor's do that because there are people who live in remote area's who don't have access to great doctors. You could just google best doctor's who work with reflux issues and then contact them and see if they will connect with you that way.
It has to be nonsense that there are no neurologists in your area, and I wonder if you are a victim of the policy of the GP not referring patients to consultants and getting paid for it? Can you change your doctor and see if you get better service elsewhere?
I tried! I literally begged the surgery in town to take me - it's 15 miles away but apparantly we are about 300 yards out of the catchment area. I've heard that the surgery in the village may be shutting down, hopefully that will mean that town will have to take me
Do you take your Modafinil with food? Seems that can help with the acid reflux. But, yes, people do say it causes acid reflux, although that is not listed in the side-effects.
I've tried with and without food. It's so bad now that I have it on an emoty stomach. i wake up with it and it lingers all ruddy day. I tried to stop the medication today for a trial but I just couldn't. I have managed to cope with just 1 tablet instead of 3 but I'm like the living dead lol mixed with a manic depressive. This is not a good life
No, it doesn't sound like a good life, at all. But, it doesn't sound like your doctor is doing all he can to help. Time to get tough with him, perhaps and start demanding answers.
You mention NSAIDs. I presume you are aware that they can damage the lining of the gut? I take NSAIDs (Naproxen) every day, twice a day, for pain. To protect my gut from the Naproxen I have to take ranitidine (also called Zantac) with the NSAIDs. The other common alternative to ranitidine in this scenario is taking PPIs like Omeprazole or Lansoprazole, but I turned them down.
I'd love to take Betaine and Pepsin, or even just vinegar and water, but I'm worried about taking very acidic things because they could make things even worse for my stomach.
My gut got so bad because for many years I took high doses of ibuprofen without taking ranitidine or a PPI. The damage ended up being permanent.
Have you already tried B1 if it would improve your digestion? I benefit from the jabs but I am not sure if it indeed is thiamine hcl that works best.
Linac if possible I'd try thiamine, yes it works for me and I know it isn't miracle cure for all but for fibromyalgia type of pain it could work perfect. There are few studies, small but still it's worth to try. I'd consult a doctor to make sure it doesn't cause issues with other medication. It's one supplement I courage anyone to try. B1 deficiency seems far more common than previously thought.
I've been taking thiamine (vitamin B1) for years, but sadly, even if I was able to improve my gut health more than I have done I still have to take the NSAIDs for pain. So my options are limited by that as well as the condition of my gut.
yeah its a bit no can do when have to take NSAIDs. I consider myself very lucky even with this fatigue which might turn out to be mitochondrial disease that I don't have any medication nor I need one. I do not even take over counter painkillers. When I was younger I was on many type of pain killers because of ruined/infected knee so it wasn't fun and NSAIDs didn't suit me at all.
WHAT? Surely not? Water is literally all I drink - never ever touch alcohol or dilute juices etc. I just drink water. Would you know where I can find out about this please? I'm associating the reflux with the Modafinil tablets but it just so happened we moved here at the same time from England. Thank you I will definitely look into this.
Hang on! Literally every pan I have is non stick! I have a coffee every morning from a pod machine and I use a GF all the time! OMG, I didn't know any of this was in any way not healthy.
I'm trying to cut out all wheat, Gluten, yeast, msg, lactose and a few other things because I was intolerance tested and they're no no's, but this has made cooking, food shopping etc an absolute nightmare. It seems like everything has something in that I can't eat.
I do have a sweet addiction that is baaaaaad. I get heart palpitations after eating anything remotely sweet and this is where I simply cannot help myself! I was just on holiday and craved no sweet things but I come home and the cravings are back. habit? That's what I'm assuming.
I did SW for a year and lost 5lb despite me following it religiously and actually running 10ks as well. The doc says that's perfectly normal and that I need to exercise more. I was running every day lol. Now I simply can't. I feel like there's nothing in the tank - literally running on fumes. It's so hard to explain but I know you guys get it.
I tried to stop the Modafinil today but I couldn't stay awake and it got to the point where I was hallucinating and showing automatic behaviour so I actually gave in and took one. My briain is currently enjoying a moments lucidity so i am trying to formulate a plan going forward
I get palpitations if I get a sugar rush, have you thought about trying a paleo low carb diet, it may solve that part of your problem. My brother went on a ketogenic diet which helped him a lot with this but I find it hard to digest the required amount of fat for it so can't manage it. It is natural to need sugar if you feel a bit down or if you need energy but it is actually very damaging to you.
I am drinking a special water that removes aluminium, it is acilis, which is silica spelled backwards. The water is said to remove aluminium if you drink a litre a day for 3 months, and it will take out 80% of the aluminium from your body.
I lived for years in Huddersfield, and they use aluminium as a means of clearing the gunk out of the water, and also use fluoride which makes matters worst as fluoride takes the aluminium in to the brain.
reading through your post again, I wonder if you have had enough thyroid meds to make a difference, as the sleeping in the day time is probably a thyroid symptom as many of us suffered this before treatment. Maybe you might think about getting an assessment of your thyroid medicine and if it were a bit low you might be able to increase the dose. This could possibly help with the sleepiness to the point that you may not need your modafinil?
It is going to be difficult to sift through all this information!
I was told that as I have asthma I shouldn't have NSAID's as it worsens it.
Just a different thought about acid reflux. A friend of mine has daily acid reflux which has been found to be a gastric hernia. No real cure apparently, except to take Gaviscon, small meals and not eating too late at night.
I found the website by Dr Sarah Myhill really useful.
There are so many metals and other chemicals that people are affected by . For example, some are really sensitive to Nickel, also found in some cookware and jewellery.
Can you recommend where to get it? Or the best one to get? I have never heard of this before and a quick search on google didn't really enlighten me lol. I'm certainly going to give it a go I just don't know where to get it.
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So confused by results - should I give up?
Feel like I wanna give up
Should I give up taking levothyroxine at night?
Giving up doctors
