Tag Archives: LDN

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LDN Day 4… a visit to the Good Doc

Last night, I didn’t feel great: My IBS was acting up, making me feel passy outy. I had a sore throat, chills, was achy, was sure I was getting a cold (but I’m sure I’m getting a cold about once a week when the flu symptoms are acting up). I went in the hot tub to alleviate the chills, then, an hour later, took a shower, then, an hour later, took an epsom salt bath and went to bed. Couldn’t stave off the chills until I made the bath about 110 degrees. I went to bed at 7pm, but didn’t go to sleep until 11pm. I again took the LDN at 9:45pm and still had a bit of a tight chest, but nothing scary. My night was very tossy turny, as usual, and quite sweaty and feverish. The night sweats had completely gone away there for a few weeks, so I need to get back to that. When I sleep without sweats, it changes everything. I “slept” from 11pm-9am. 10 hours, but I only got 7.5 hours sleep. I was awake from 1am-2am, 5am-5:30am, 6am-7am and multiple other times briefly throughout the night (so said my Zeo). It makes me so crazy. I just want 8…9…10 hours of deep, uninterrupted sleep.

This morning I feel okay. Very stiff, but that is usual. My hands aren’t quite as swollen and sore. My eyes are still puffy. I have a sore on my tongue ~ something I’ve never experienced before. Hopefully it will go away if I ignore it.

Maybe you’re reading this for the LDN info and you didn’t sign up to hear the other stuff, so,for you: I feel no different than before I started on LDN 4 days ago (probably worse, actually) and, now, here is some fun other stuff I’m doing to help my symptoms:

My new Good Doctor has me starting a new regimen today. I have to do a 3-day stool collection (that’s probably why my IBS is acting up ~ at the thought of a poop collection!). Today, I am also starting a new diet and going shopping for a bunch of new supplements. The diet is: absolutely no grains of any kind, no dairy, no red meat, minimal amounts of processed foods and sugar. She said, if you can’t grow it, don’t eat it. I already know I’m going to break that rule. I will be strict about no grains (no granola, no rice, no popcorn! Oh my!) and no dairy, but I’m sure I’ll be using ketchup and mayo etc., buying tinned soups… those are things I can’t grow, right? Anyway, I’m trying to figure out what to eat for breakfast and it is stressing me out. Maybe I need to buy a juicer. Gross.

I’ll tell you the supplement details later in case anyone wants to try them.

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LDN Day 3…nightmare

Last night was a terrible night. I took the LDN at 9:45pm and stayed up until 11:45pm to make sure I felt okay. I still had a tight chest and a headache all day yesterday. I was so tired, but my brain was buzzing. I woke up every 20 minutes to hour the whole night. 12:05am, 12:25am, 1245am, 1:15am, 2am… Each time I looked at the clock, I couldn’t believe such a short time had passed. I had two nightmares that woke me gasping for air, turning the light on, unsure of where I was. I felt feverish the whole night, had sweats, was burning up. I took my temperature multiple times and couldn’t believe it was normal. How can I be this hot, sweaty and shaky and not have a fever? I got 7 hours sleep in the end.

This morning, I ache. I wonder how long I can stay on this drug. If it’s going to make me worse before it makes me better, can I stick with it? I was getting better in the weeks before I started LDN, I think. Now, I feel like I’ve been set back a month. My head hurts, my shoulders and back hurt. My hands are so swollen, I can’t make fists. And they hurt ~ the bones and the muscles. I am shaky, my eyes are puffy, I feel like I inhaled a cat, and I am hobbling because my muscles are so stiff. God, all I want is deep, long sleep for days in a row. It would change my life, I think. But I still don’t want to try painkillers, especially now that I am on LDN because I like to do one drug at a time. I’m not even taking melatonin or my antihistamine or my inhaler (although, I think that will change today).

I have this device called a Zeo. I highly recommend it to anyone who wants to track their sleep habits. I wear a headband at night and it tells me exactly when I woke up, when I was in deep sleep, REM and light sleep. I can go back and see that the day I felt really good ~ the day I started raking LDN ~ I had had 8.5 hours sleep. Unheard of! I don’t think I’ve had that much sleep since I was a child. Or maybe since I was a drinker. Since that night, I have had a total of 19 hours sleep. In three nights. Not enough for me to feel better. Not enough for me to recover. Sometimes I think I might be able to start to cure myself if I could just sleep.
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LDN Day 2… not as bad

Yesterday, in the afternoon, I felt much better. I cleaned my room, did laundry, played with the dogs. My temperature regulation was all over the place the whole day. Hot flashes and chills. I went for short visits to the hot tub numerous times to get my temperature up (yes, it’s August). The hot tub might have been the best purchase of my life. I never realised when I bought it how important it would become to my healthcare regime. Deep bone chills are one of my most debilitating symptoms.

I took the LDN again last night at 9:30pm. This night went a lot better. I had a tight chest and a bit of a drugged feeling, but nothing like the first night. I also had weird cramps in my calves. I went to bed around midnight and didn’t have a good night’s sleep. I have not had drenching night sweats in about three weeks (thank god), but last night I had some sweats ~ not terribly drenching, just my face and neck. I actually felt cold most of the night and kept putting the duvet over my head. I also felt like I was awake the whole night. It seemed as if I were floating in an ocean, with the water just covering my body and face and every few minutes I would break the surface of sleep and be aware of what was going on in the room. All I want is to sink deeply into that ocean of sleep. That’s all I’ve ever wanted my whole life ~ to be able to sleep deeply, not be woken up by every twitch and sound, not be on high-alert in my dreams so I can make sure I’m ready if something happens… wake up rested. Most people would take a sleeping pill or an anti-anxiety, but, that’s something else you’ll learn about me ~ I don’t take drugs if I can possibly help it. I have to be in a pretty big crisis to give in and take a pill. I woke up at 5am starving. I made myself go back to sleep for a little bit (or, more accurately, lie in bed for two hours trying to get to sleep, reading etc.), but hunger forced me to get up. Interesting side effect. In the end, I only got 6 hours sleep. 11 hours in two nights is not enough for me and I am feeling the effects. I am very tired, muscles are achy, my back is sore. This morning, as I write this, my temperature is still all over the place. I got out of bed chilly, but, minutes later, I got so hot I had to take off layers of clothes

But, I am elated that I didn’t have a serious reaction to the LDN last night. That’s good news. I’m going to the CFS clinic this afternoon. I’m sure I’ll feel like it’s a wasted trip. Stay tuned.

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LDN Day 1… I start low-dose naltrexone

I cannot find a single post online with a similar initial reaction to low dose naltrexone (LDN) to the one I had.

My doctor told me to take the 1.5mg pill at 10pm. I took it at 9:30pm so I had a little extra time to “monitor” the effect it had on my body. One hour later, while watching tv, it hit me. My chest got very tight and I was having difficulty breathing. My eyesight went a little blurry. I felt drugged, like I was viewing the room from back in a tunnel. I started trembling all over and got very cold. This out-of-the-blue reaction made me panic a little bit and I lay down on the floor with my feet up to stave off the light-headedness. I did a mini-meditation, calmed myself down, breathed as deeply as possible. But the tightness in my chest was really scaring me. My husband decided to drive me to the emergency room, just to be on the safe side ~ not even to go in, necessarily, but to be there in case. We sat in the parking lot of the ER until the chest tightness loosened, the shakes eased up a bit and I was warmer. Then we went home to bed.

I was shaky getting up the stairs and getting undressed and I realised, once I was lying in bed, that my breathing was still laboured. I stayed awake reading until 2am ~ that’s about 3 hours past my normal bedtime, but I was too nervous to close my eyes. I didn’t get a very good night’s sleep, but that’s nothing new. I got up at 7am and, this morning, I am very tired and achy, with puffy eyes and crampy muscles. Those are all fairly normal complaints from me, so I can’t necessarily attribute them to the LDN, but, like I said, yesterday was a really good day for me (I was smiling, walking the dogs, listening to music, almost feeling hopeful), so, now I’m wondering…

Was it a mistake to start LDN just as I had seen some progress in my symptoms? On the first day that I had felt emotionally and physically strong in months? Am I now going to have to get worse before I get better? And what if “worse” sends me back to the dark days? What if I can’t take the worse, even if I think it’s going to get better? And what if the “better” isn’t better than I was feeling yesterday on my first good day?

Today, I am still feeling unstable. I’m having difficulty breathing, achy muscles and I can’t regulate my temperature — chills, feverish-feeling. Oh, and a doozy of a headache, different from my normal ones, all in the back of my skull. I am scared of all the unknowns and terrified that my experience last night was a serious allergic reaction and I should heed my body’s warning… But, I’m still going to take the second dose tonight. Stay tuned.

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Hello world!

August 19th, 2012

I don’t know if it was a good idea to start low dose naltrexone on the first day this year that I might describe myself as feeling good. But I did ~ I started it last night and this is going to be my daily diary of how it is working.

A little background: I am being treated  – or, rather, I am treating myself – for presumed Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). I say “presumed” because the tests, diagnosis and treatment for this condition are a joke. Doctors aren’t educated about ME – even the “experts” – and they are extremely hesitant to discuss this diagnosis or order tests that might be “unneeded” in order to confirm this diagnosis. Because there is no definitive test to confirm ME, there is always a tiny seed of doubt that it might not be the answer. For me, that seed is very small. The symptoms fit too perfectly.

More to follow…