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Old 12-25-2008, 06:30 PM #761
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Cherie that was a sad, but inspirational story. Thanks for sharing it.

Update on me FWIW. It seems my BP has headed back down to normal, since I reinstituted half of my water pill I take for BP. I had stopped it, as per the doctor, since I went off of salt, as completely as I could manage to do. I must have been retaining fluid which raised my BP. I had to ask if LDN could do that, raise your BP that is.

So all is back to normal. Yes Cherie, I check my BP often. I also had very low BP all my life. Then out of the blue it went up like this time did.

The MS Neuro thought it was a lesion in the Autonomic Nervous System. I am low in my normal body temperature and heart rate, and a few other areas the A.N. system controls. It seems to be messing with me for years.

Today, well last night, I increased my dosage of LDN to 3. mg from the original 1.5 mg starting dosage from 9 days ago. I had the same reaction at night. I would wake up for a few seconds, look at the clock, and fall right back to sleep with very heavy eyelids.

I could not stay awake if I wanted to. It happened every hour, until I woke up 9 hours later, which is my norm. Very few vivid dreams I remember, but I like colorful dreams that are not scary.

This quick wakefulness stopped after a few days on the 1.5 mg. It will probably stop in a few days as I adjust to the higher dosage.
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Old 12-26-2008, 12:32 AM #762
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Update on me FWIW. It seems my BP has headed back down to normal, since I reinstituted half of my water pill I take for BP. I had stopped it, as per the doctor, since I went off of salt, as completely as I could manage to do. I must have been retaining fluid which raised my BP. I had to ask if LDN could do that, raise your BP that is.

So all is back to normal. Yes Cherie, I check my BP often. I also had very low BP all my life. Then out of the blue it went up like this time did.

The MS Neuro thought it was a lesion in the Autonomic Nervous System. I am low in my normal body temperature and heart rate, and a few other areas the A.N. system controls. It seems to be messing with me for years.

Today, well last night, I increased my dosage of LDN to 3. mg from the original 1.5 mg starting dosage from 9 days ago. I had the same reaction at night. I would wake up for a few seconds, look at the clock, and fall right back to sleep with very heavy eyelids.

I could not stay awake if I wanted to. It happened every hour, until I woke up 9 hours later, which is my norm. Very few vivid dreams I remember, but I like colorful dreams that are not scary.

This quick wakefulness stopped after a few days on the 1.5 mg. It will probably stop in a few days as I adjust to the higher dosage.
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Phew, that's good news . . . although I really wasn't too convinced it was the LDN, mostly because I would have thought I'd have heard that possibility from "someone" through the years. But, I suppose there's always a first.

I don't take any other meds, except the occasional Naproxen, and I always wonder how people can figure out which drug is causing what. I was so nervous when I first went on LDN, I didn't even try adjusting my A/D for a year. I was able to go off then though.

Sorry to hear you wrestling with the Autonomic Nervous System from the MS. I have very low blood pressure, but I don't think it's related to the MS. I have to eat a lot of salt sometimes though, to keep things in check.

The sleeplessness and dreams should level off, as you said. I don't need near as much sleep as I used to pre-LDN, but I do have to have my afternoon nap! You are brave to make the change on Xmas Eve. Hope the lack of sleep didn't interfere with your day too much.

Sounds like everything is going pretty smoothly, which is GREAT for those of us who have trouble with meds.

Cherie
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Old 12-27-2008, 01:33 AM #763
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I had made up my mind when I started LDN that I would take the higher dosage on the tenth capsule/s. I checked the calendar because I wanted it to be 2 am on Christmas Eve, which is really Christmas Day.

My DH and I, had no plans to go out that day, just the two of us and a roast.

If a filler or drug were to bother me, it would usually show up in the first week, IMO.

Cherie I remember my blood pressure being so low I had to increase my salt intake also. A bag of potatoes chips usually fixed the problem with a bottle of Pepsi. They say you crave what your body needs. Salt free potatoes chips just don't cut it. So I am enjoying my cup of coffee and homemade-salt-free chocolate chip cookies.
I hope everyone had a great Holiday. Cherie, was it Boxing Day for you besides?
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Old 12-27-2008, 08:42 PM #764
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I agree that any serious problem with a med would likely show within the first week (at least that's my personal experience) .... but when we are "super" sensitive to meds, you always want to keep a close eye on things.

I did ok on an A/D, for several weeks, even a few years on one occasion . . . but it wasn't until I went off that I realized that many of my symptoms were actually caused by the A/D.

We're kinda' "oldies" in this game though, so hopefully you have become very in-tune with your body (like I have over the years) .

My friend used this fake salt (can't remember what it was called), on all her food. In fact, that's all she had in her house so that she didn't get tempted. I got used to eating it there after a while, and just kept a bag of pretzels hidden for when I needed the salt . . .

Yes, it was still a holiday yesterday, but the stores were open. I got some great deals!

How are you doing on 3.0 mg now? Do you notice any improvements yet?

Cherie
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Old 12-28-2008, 01:02 AM #765
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I tried one AD in my life Cherie. It was for pain, burning legs and feet. It was Cymbalta. I used a low dose for one week. I was to increase it if I felt pain relief. This was this year, btw in February.

In one week my eyes were completely dilated. It looked kind of pretty, since they are usually constricted with very small pupils. I have always been light sensitive. The tears roll down in the sunlight. My make-up hates that.

My MS Neuro said, stop at once and don't use them again. I believe it is a SSRI. I think my Serotonin doesn't like being messed with either. I truly hope my Endorphins don't mind the LDN.

I am going to take my 4th dose of 3.0 mg soon. It is early here. I don't go to bed until late, like when the cows come home or the rooster wakes up. (joke) Skip said I could take it at 3 am if that is when I go to bed. Just take it a little before bedtime.

As for noticing any difference on the increased dosage, perhaps in my balance. It may be steadier. I haven't been really outside walking to tell, but I haven't lost my balance at home lately, which usually leads to me catching myself or falling over. I also may laugh more than I usually do, or so my DH says. I think he's keeping a secret journal. Lol

I have a weird, dry, sense of humor. Not much makes me laugh, chuckle or snort. So if I am more cheerful, then that is a good thing. The holidays have been very stressful, and a close member of my family died yesterday.
So this should put the LDN to a test for sure.

So no bad reactions, TG and some good signs. Only more time will tell. I woke up less often last night, but had some cool, wild dreams.
Thanks for asking,
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Old 12-28-2008, 07:40 AM #766
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The holidays have been very stressful, and a close member of my family died yesterday.
So this should put the LDN to a test for sure.

I'm so sorry about your loss. The holidays add their own brand of stress but when things like this happen, especially at the holiday time, it just really takes its toll on us. I hope the LDN continues to be helpful to you. It's been a Godsend for me.
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Old 12-28-2008, 12:07 PM #767
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The A/D I used for a few years was Celexa, and it was originally rx'd for fatigue (that they thought might be caused by depression, even though I tested "not clinically depressed" ). It didn't work for the fatigue BUT it really helped the spasticity pain!! It was still bad, but it took the edge off for me.

When I started on LDN, the spasticity pain let up entirely and immediately. I have had it since, and it gets worse with the cold weather, but it is NOTHING like it was for two years prior to going on LDN.

Since I was only using the A/D for pain, and it wasn't working for fatigue, I went off of it a year after starting on LDN. It was hard for me to get off (took three attempts), but when I did, my fatigue LIFTED! I am still pretty lazy most of the day, but I don't need near as much sleep as I used to (with the A/D) and some other symptoms went away too. I "dropped" 35lbs quickly, the ringing stopped in my ears, and I can't remember what else.

Glad to hear that maybe your balance is improving. Some of my symptoms improved immediately, some did over 9 - 12 months, and some never did. It was more than I allowed myself to hope for though.

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Old 12-28-2008, 12:19 PM #768
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I'm wondering if my inability to sleep is being caused by the LDN. When I first started taking it I was bothered a little by insomnia. But for the past couple of nights I haven't been able to sleep more than a couple of hours. And I'm not excessively sleepy during the day....even after a night of tossing and turning. I've never needed the traditional 8 hours per night and I've been fine with 4-5 hours. But I need consistent sleep....not 4 or five hours broken up into 1 hour intervals! I'm planning on taking an OTC sleep aid tonight because I'm tired....just not sleepy.

I'm on 4.5 mg per night. The only other meds I take are my BP med and my thyroid med. What do ya'll think? Should I go back to 3.0 mg and see if I sleep better?
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Old 12-28-2008, 12:28 PM #769
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It's worth trying, Kelly.

I know that LDN helps/hinders () the amount of sleep I require, but it fluctuates too. At PMS time, I hardly sleep at all . . . and other times I sleep 8 hrs at night and then 2 - 3 in the afternoon too.

I have been on 4.5mg consistently (except a few weeks at the start of every cold season) for over 3 yrs now, and even though I can say "overall" that I need much less sleep than I used to pre-LDN, it definitely fluctuates.

It may be hard to "test" the difference in one attempt, because maybe you just fluctuate as well. If you have no problem otherwise going up and down, I'd suggest testing it a few times.

It could just be the stress, excitement and sometimes emotional baggage that comes with the season, but you won't know until you test it, right?

Cherie
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Old 12-28-2008, 01:59 PM #770
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Yep Kelly, I had to go back to 3mg for awhile for the same reason.

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