Re: Nausea Drugs; Help dr. Buchfuher!

[Guest guest]

Hi,

How horrible ! As I understand it from the RLSF Medical Bulletin, just

about every drug that requires a prescription for nausea in the US crosses the

brain barrier and aggravates RLS symptoms. I believe it from all the posts I

have read since I have been a member of this group of perhaps a year. I have

seen dozens like yours.

From: Mcks1@...

Hi folks....

Just had a nasty nasty bout of the flu and in desperation took some phenegran.

Biiiggggg mistake. .....Hugging the porcelain god all night on the one hand...

and the arms and legs doing the jitterbug all night on the

other....hmmmmm...what a choice. Does anyone else get the same reaction from

that medication? And if so.... care to picket with me? kidding!! in

Atlanta

It is about time we got this segment figured out as best be and I am pulling

in the resources we have such as sending a copy of this to Dr. Buchfuher and

Dr. Elaty who is sick at the moment with a very bad cold.

Lindy's (see her post below) son who has RLS had phenergan and it drove his

symptoms nuts. During an emergency, the 2nd time he was given demerol with the

phenergan which evidently kept the RLS at bay but it sounds like that was more

for pain with the phenergan thrown in for possible nausea from the demerol?

I do know that demerol requires a written prescription; it is not something

the doctor can call in over the phone. However, I would think most RLS doctors

who understand why a rare script for a combination of demerol might be

necessary with phenergan, would do so or at least consider it, if they could

at least talk with them on the phone and someone could go by their office to

pick up the script. I looked in the PDR and I see it phenergan comes with

codeine which might be sufficient to hold the RLS symptoms at bay also.

The only other alternative I know of is to have the prescription for a drug

faxed to a Canadian pharmacy by your doctor; the drug listed in the RLSF

Medical Bulletin that does not cross the brain barrier for nausea is

domperidone. If the prescription gets there by 4:00 PM (very nice; if later,

they would try), it goes out by FedExp arriving the next day. The pharmacy

accepts credit cards although I am not sure which ones. The Canadian pharmacy

in Montreal used for one RLS sufferers in our group in the past is at

1-, N. J. Shore, Pharmacien.

I hope Dr. Buchfuher can provide suggestions for this dilemna of extreme

nausea and not much to take for it that does not drive RLS symptoms crazy. I

know Dr. Elaty will post to us on his thoughts once he feels better which Jodi

can forward.

Also, I talked to Virginia just a few weeks before she fell ill and

subsequently died. Her new Edition of the Sleep Thief had just been completed

and was on its way to be printed, as I understand it. Does anyone know for

sure?

Elaty, M. D., the Medical Advisor of the Central Florida RLS Support

Group, NEW UPDATED " INFORMATION ON RLS " has just been posted:

http://www.mlists.net/judson/Elaty.html

One significant addition is a brief discussion 5. J.: Botox Treatment for

recalcitrant RLS cases. We have one woman who has a severe, severe case who it

relieved her symptoms for three months but then further injections did not.

But, 3 months freedom is 3 months better then little relief despite every

conceivable treatment!

Barbara

Both of my boys have RLS, as do I. They are 14 and 15. I took the 15 yr old

to the emergency room two weeks ago tonight with stomach pains to a hospital

near our home. The CT scan said it was pancreatitis, not appendicitis, as the

surgeon thought. While we were still in the ER, son felt nauseous and they

gave him a shot of phenergran. Poor baby's legs started shooting what seemed

like to the ceiling. When it finally wore off, needless to say, I told the ER

not to give him any more (We were there seven hours before they admitted

him.) I asked the ER doc for pain meds, not phenergran, but he never got it.

After they admitted him, I asked the admitting doc to give him something for

pain. Well, it was Demerol AND Phenergran. Amid my protests, the nurse

insisted it was only a small amount of phenergran to keep the demerol from

upsetting his stomach. So I let her give it to him. He went to sleep and his

legs didn't move. So, I guess I can deduct that the narcotic in the demerol

overrode the small amount of phenergran that was in the injection.

After the doctors couldn't agree on what to do--the GI doc wanted to do

exploratory surgery and the surgeon said he didn't feel right about it--we

called in another surgeon. He said that 15 yr.- olds don't just " get "

pancreatitis and to send him to Texas Children's in Houston. So we got in an

ambulance and went to Houston (45 miles south). Although all of the hospitals

in the Medical Center were on Drive-by status that night, they took my son and

put him in a room right away, even though the waiting rooms and halls were

full of patients. Son immediately said he was nauseous, and I went through

the whole story again. I said if you give him phenergran, you have to give

him the demerol with it. The demerol and phenergran worked again--no RLS.

Everyone at both hospitals was very nice and listened. Although some of the

staff didn't know about RLS, others did, everyone was very nice and honored my

requests, which were in the best interests of my son. After spending 21 hours

in the Texas Children's ER--there weren't any rooms-- we finally go to a room

and the doctor said his pancreatitis was caused by a virus.

Although it was very scarey, and Texas Children't is like organized chaos, in

the future, I won't stop at the hospitals between here and Texas Medical

Center in Houston. It may be inconvenient, but the peace of mine is worth

more than the convenience of being ten minutes from home. Son came home in

two days after the virus " went away. " It was strange but true --and scarey.

My next step is to find a doctor that treats pediatric RLS. (My neuro here

won't see by boys until they are 20.)

BTW. Phenergran doesn't effect me except relieve my nausea--thank goodness.

Lindy B. (49) in Southeast Texas

[Guest guest]

Barbara

I purchased Virginias " Sleep Thief " shortly after her death and and wondering

if I got the (new?) one. I don't know she had written two of them. Do they

both have the same title? I read a blurb that she had written a book (Ithink

called) Jesus' s Handmaiden which will be out if it isn't already. Let me

know if there are 2 " Sleep Thiefs " ???

Lee