RE: LDN & Baclofen & MS - spasms ? Pump/medication malfunction?

[Guest guest]

From: SLenzrph@...

[mailto:SLenzrph@...]

Sent: Friday, 23 July 2010 10:52 PM

pmkerbel@...

Subject: Re: [low dose naltrexone] LDN & Baclofen & MS - Valium

for spasms

You will need to give more details:

1: Did it happen anywhere near the time you had to replace the

cassette in your pump?

I am not sure that I know what you mean by “cassette�  The pump

is relatively new as I have had the pump since April 08 and the battery should

be good for another 4 to 5 years.  I had the last refill on the 25th

May and at that stage was only experiencing increased spasticity in the

mornings.  You are RIGHT, THANK YOU, THANK YOU and have made me think about it

& go back to my records and it does seem that the spasms only started after

this refill.  I remember thinking when they started that it might be an allergy

(I am very allergic to many thing and it usually takes the form of spasms at

night.) so I tried to fix them this way first .  In fact I desensed to both

salt and oils which were both creating spasms.  After the refill  I  increased

10% on June 24, then 10% increase on 30 June and 20 July.  The doctors at the

pain clinic have said that I must go for a pumpogram to test all is working OK

but could there be also problem with the fresh baclofen/ lisoreal?  The

confusing thing is that I have had quite a lot of improvement giving more

flexibility to the leg and less intensity to the spasms.

2. Has it happened over two or three cassettes or just one?

3. Did it happen following a dose change of LDN?

No

4. What strength LDN are you on

I have been taking 3.00mg in a capsule for 1 year.  Rice as a

filler.  I have had 3 anaphalactic shock reactions and I am one of that small

minority that do react to fillers as I tend to have allergic reactions to

synthetics – drugs, vitamins etc.

5. Where did you get the LDN?

From Lindfield Compounding Pharmacy Sydney.  They are careful

& have a good reputation

6. Prior to the pump, how would you define your spasms: all the

time, most of the time, some of the time every now and again, etc?

Prior to the pump the spasticity in the left leg & spine

increased over a couple of years until leg was quite rigid.  Spasms at night

also increased until they were intensely painful & I was up 15 times at

night.  I also developed intense pain on the skin on left leg &   torso.  Then

I started getting spasms when walking/standing.

7. What has changed?

The benefits from LDN has made it more difficult to compare. 

After the refill when the spasms started I also started getting pain flares

like bee stings in the feet  but when I took 0.5mg LDN on one night only these

stopped and I also regained flexibility of the leg at night and regained my

sense of taste & smell.  It also stopped a sinus infection.

8. How heat intolerant are you?

Fairly.  But we are currently having the coldest winter in 60

years so heat is currently not a problem

 

9. Did this just all of a sudden start to happen or did you

progressively get worse?

The hot flushes gradually increased in intensity & I got hot

hands at night  over a period of 2 months.  I did not realise that this could

be an allergic reaction until I read of someone else on the LDN site with hot

hands.  Then I started having noticeably more spasticity in the morning.  I

realised that together with the hot hands & flushes this was a sign that I

might be becoming intolerant so  I decided to change to transdermal.  I had the

refill and the intense spasms started before I could start on the transdermal.

The first thing you should look at is what is also going

on. Answering these questions will paint an incomplete, yet vital, picture

of just what happened. I know that some folks will ask about fillers,

etc, but the actual incident of filler issues is so far overblown by some on

this board it would appear that every product failure is because of

fillers. Just not true. Less than 0.1% of the total population is

allergic to fillers and much less than that is allergic to hypoallergenic

fillers like Avicel. It is a disservice to this patient population to

continually blame fillers for LDN issues.

Dr.Skip

In a message dated 7/23/2010 4:15:14 A.M. Eastern Daylight Time,

pmkerbel@... writes:

Thanks for that – I will try Valium

----- Original Message -----

Has anyone had the experience where LDN limits/restricts

the effect of Baclofen? After a happy year on LDN (with a baclofen pump controlling

spasms & spasticity) the spasticity went crazy. I knew there were

allergy issues involved too so I addressed those first. I have also

increased the pump dose 3 times (30%) and although these measures have improved

things I still have difficulty sleeping due to intense stiffness/ pain in hip

& leg and spasms. From being very sensitive to baclofen where I could

only tolerate the lowest dose or I was too weak/shaky to stand I now hardly

seem to react.I really value the greater strength (thanks to LDN) but am just

trying to return to my earlier less spastic condition.Value any thoughts.

Thanks.

Trish