Re: Respiratory distress on LDN?

[Guest guest]

>

> Dear Listers: I received this from one of my adult

> LDN patients:

>

> " I believe I have read that some people have

> respiratory issues when using LDN. Do you know exactly

> what they experience? I feel like I am going to

> " forget to breathe " and like I have to consciously

> tell myself to breathe. It's very scary...it sort of

> feels like I might not draw breath.

>

> To be sure it was the LDN that was causing it, I

> stopped taking it last week, and since then, have not

> had that sensation. It happens about an hour after

> taking the LDN and lasts for hours. It is particularly

> problematic for me because I am such a horrible

> sleeper, I almost never fall asleep before at least 2

> or 3 AM, sometimes 4AM. So, I lie there for hours

> fighting this nastiness. "

>

> Any thoughts or like experiences from anyone here?

> Any info appreciated, thank you.

> Dr. Jaquelyn McCandless

>

===========

This person needs to have a sleep study done while off the LDN to see

if sleep apnea is a problem. The LDN may be causing palpatations or

anxiety which I have hear others in the early days of LDN mention,

lessening dose has sometimes helped this. I did know of one person

who had more problems sleeping/breathing when falling into first stage

sleep after starting LDN but I have lost track of this person, the

situation was more like the LDN brought forth a severe sleep apnea

problem that was already there and needed attention. I do know the

person was put on a sleep apnea machine and told to lose weight as the

weight was causing the apnea. Don't know if person ever went back on

LDN or not.

If this person has MS the muscles could be collapsing during sleep and

causing apnea. A sleep study should be performed while off LDN.

[Guest guest]

What dose are you taking and what is the filler being used?

[low dose naltrexone] Respiratory distress on LDN?

Dear Listers: I received this from one of my adultLDN patients: "I believe I have read that some people haverespiratory issues when using LDN. Do you know exactlywhat they experience? I feel like I am going to"forget to breathe" and like I have to consciouslytell myself to breathe. It's very scary...it sort offeels like I might not draw breath.To be sure it was the LDN that was causing it, Istopped taking it last week, and since then, have nothad that sensation. It happens about an hour aftertaking the LDN and lasts for hours. It is particularlyproblematic for me because I am such a horriblesleeper, I almost never fall asleep before at least 2or 3 AM, sometimes 4AM. So, I lie there for hoursfighting this nastiness."Any thoughts or like experiences from anyone here? Any info appreciated, thank you. Dr. Jaquelyn McCandless

[Guest guest]

Dear Jaquelyn,

I generally like to save categories of posts regarding problems that arise from LDN use So far I have not heard of this coming up in any significant number of e-mails. There has been sleeplessness and even a few cases of anxiety. Would posts from these areas help?

My best

Aletha

[low dose naltrexone] Respiratory distress on LDN?

Dear Listers: I received this from one of my adultLDN patients: "I believe I have read that some people haverespiratory issues when using LDN. Do you know exactlywhat they experience? I feel like I am going to"forget to breathe" and like I have to consciouslytell myself to breathe. It's very scary...it sort offeels like I might not draw breath.To be sure it was the LDN that was causing it, Istopped taking it last week, and since then, have nothad that sensation. It happens about an hour aftertaking the LDN and lasts for hours. It is particularlyproblematic for me because I am such a horriblesleeper, I almost never fall asleep before at least 2or 3 AM, sometimes 4AM. So, I lie there for hoursfighting this nastiness."Any thoughts or like experiences from anyone here? Any info appreciated, thank you. Dr. Jaquelyn McCandless

[Guest guest]

>

> Dear Listers: I received this from one of my adult

> LDN patients:

>

> " I believe I have read that some people have

> respiratory issues when using LDN. Do you know exactly

> what they experience? I feel like I am going to

> " forget to breathe " and like I have to consciously

> tell myself to breathe. It's very scary...it sort of

> feels like I might not draw breath.

>

> To be sure it was the LDN that was causing it, I

> stopped taking it last week, and since then, have not

> had that sensation. It happens about an hour after

> taking the LDN and lasts for hours. It is particularly

> problematic for me because I am such a horrible

> sleeper, I almost never fall asleep before at least 2

> or 3 AM, sometimes 4AM. So, I lie there for hours

> fighting this nastiness. "

>

> Any thoughts or like experiences from anyone here?

> Any info appreciated, thank you.

> Dr. Jaquelyn McCandless

>

Dr. McCandless,

I've been taking LDN since March 2005 and that's never happened with

me.

Artie

[Guest guest]

The Fear Factor? Somatic response?

Never heard this reaction before. Maybe allergy if not somatic? How long is this person taking the LDN for? a few days only, or MONTHS and then this started?

[low dose naltrexone] Respiratory distress on LDN?

Dear Listers: I received this from one of my adultLDN patients: "I believe I have read that some people haverespiratory issues when using LDN. Do you know exactlywhat they experience? I feel like I am going to"forget to breathe" and like I have to consciouslytell myself to breathe. It's very scary...it sort offeels like I might not draw breath.

[Guest guest]

I had that feeling when I first started taking LDN. I feel it was

due to anxiety and starting out on to high of a dose. I almost gave

up because of my MS symptoms coming back, pain and extreme anxiety,

and not sleeping. I use the liquid form so I backed down to 1 mg

for a few wks, and then increased VERY slowly. It took me about 6

months to get up to the 3-4mg I take now and have had no problems

since. I have been on LDN for about 1 yr now.

-- In low dose naltrexone , JAQUELYN MCCANDLESS

<JMcCandless@...> wrote:

>

> Dear Listers: I received this from one of my adult

> LDN patients:

>

> " I believe I have read that some people have

> respiratory issues when using LDN. Do you know exactly

> what they experience? I feel like I am going to

> " forget to breathe " and like I have to consciously

> tell myself to breathe. It's very scary...it sort of

> feels like I might not draw breath.

>

> To be sure it was the LDN that was causing it, I

> stopped taking it last week, and since then, have not

> had that sensation. It happens about an hour after

> taking the LDN and lasts for hours. It is particularly

> problematic for me because I am such a horrible

> sleeper, I almost never fall asleep before at least 2

> or 3 AM, sometimes 4AM. So, I lie there for hours

> fighting this nastiness. "

>

> Any thoughts or like experiences from anyone here?

> Any info appreciated, thank you.

> Dr. Jaquelyn McCandless

>

[Guest guest]

Hi,I had no problem the first night I took LDN, 4.5 dose. but, the 2nd night I had chest pains, felt extremely nervous, hyper, just downright awful. I did not give up on LDN though as the first night I did get very good results, abating of numbness and spasms. I went to 1.5mgs for 2 nights then up to 4.5 again. I had same horrible symptoms as 2nd night when I tried to go to 4.5mg. So, for about 2mons I went up and down from 1.5. through various levels to a high of 4.0mg. I even did stop for a few days when I seemed to get flu like symptoms from the LDN. Now I am on 3.mgs and seem to be doing fine on that. I have been sick for many yrs, so guess I have a lot of things the LDN must work through.I think some of us must need to get used to LDN too, like any other meds. But, since it does take away my numbness, spasms, pains and some other symptoms, I have a lot of inducements to continue it.Oh, and I am a horrible sleeper but am finding this is improving now that I am feeling better and have the LDN better regulated. I do not see anything else worthwhile out there for me and I am just so happy to have LDN and so lucky it is helping. I wish it had been around 40 yrs ago. A few bad wks, even months to get used to it is worth even a few hours of no numbness and spasms. If you are desperate enough you will try most anything and try your best to make it work and hopefully it will eventually work. I have had to deal with my chest muscles going stiff and then having trouble breathing many times in the past, so I have gotten over the fear of this. I can see where your patient would be afraid, I was for yrs. But, I never died from it, so finally just accepted it as another horrible symptom that in my case did pass. She will probably get over hers if she goes slower on the amount of LDN she uses. We cannot be afraid, won't help, will make things worse. BOn 1/21/07, JAQUELYN MCCANDLESS <JMcCandless@...> wrote:

Dear Listers: I received this from one of my adult

LDN patients:

" I believe I have read that some people have

respiratory issues when using LDN. Do you know exactly

what they experience? I feel like I am going to

" forget to breathe " and like I have to consciously

tell myself to breathe. It's very scary...it sort of

feels like I might not draw breath.

To be sure it was the LDN that was causing it, I

stopped taking it last week, and since then, have not

had that sensation. It happens about an hour after

taking the LDN and lasts for hours. It is particularly

problematic for me because I am such a horrible

sleeper, I almost never fall asleep before at least 2

or 3 AM, sometimes 4AM. So, I lie there for hours

fighting this nastiness. "

Any thoughts or like experiences from anyone here?

Any info appreciated, thank you.

Dr. Jaquelyn McCandless

[Guest guest]

Maybe this was already addressed here, But I'm thinking it's to do

with the filler being used in the capsule. There are various

fillers, some people have allergic reactions to certain ones. I have

not read about that in recent months but there is some info on the

LDN website about how pharmacists should formulate the LDN- which

fillers to avoid, and which can cause allergic reactions.

For instance, I have Sjogrens Syndrome and need to be sure that I

can have it formulated with the filler that is least likely to add

to dryness, yet is effective and tolerable. (Not using LDN yet due

to a complication that came up just as I was finally able to

convince the Doc to try it thanks to the Penn State study.)If I'm

cleared of Lymphoma after having a bone marrow sample I can start

LDN in the late spring.

Looking forward to it! ~ Mia

> >

> > Dear Listers: I received this from one of my adult

> > LDN patients:

> >

> > " I believe I have read that some people have

> > respiratory issues when using LDN. Do you know exactly

> > what they experience? I feel like I am going to

> > " forget to breathe " and like I have to consciously

> > tell myself to breathe. It's very scary...it sort of

> > feels like I might not draw breath.

> >

> > To be sure it was the LDN that was causing it, I

> > stopped taking it last week, and since then, have not

> > had that sensation. It happens about an hour after

> > taking the LDN and lasts for hours. It is particularly

> > problematic for me because I am such a horrible

> > sleeper, I almost never fall asleep before at least 2

> > or 3 AM, sometimes 4AM. So, I lie there for hours

> > fighting this nastiness. "

> >

> > Any thoughts or like experiences from anyone here?

> > Any info appreciated, thank you.

> > Dr. Jaquelyn McCandless

> >

> >

> >

>