Zelnorm: what's your experience?

[MightyMouse]

Round two-ding! ding!

This is my gastro's second attempt to get me to try Zelnorm. He wants me to take 1/4 the regular starting dose to see if it helps with my motility. I'm having break through reflux and heart burn pretty much daily now, and he thinks it's due to the EDS and my gut's lack of elasticity and motility, stuff just stays in my stomach too long and then leaks upward when I go to bed. I've been having really sharp abdominal pain from the reflux.

Gotta do something--it's either that, or double my already double nexium dose.

I searched old posts, and pretty much folks have reported that it often has worsened symptoms, and caused the runs. I'm mostly concerned with making my dizziness worse, and altering my already compromised attention span.

My headache is still here too, so I'm a bit 'edgy' and not sleeping well. Still a few weeks to see my neuro. Nina

[dizzygirl]

Um.. I dont have any experience with zelnorm.. only that my doc will not give it to me B/C of my pots.. doc feels it will make my potsy things worse...(for me pers.) but maybe it wont effect you badly.. and it will help you...I hope it will..tummy aches are not fun by any stretch..

I hope that you feel better soon Nina.. and I am so very sorry that you still have a freggin' headach/migraine. that is horrible!

take care dear!

HUGS

Linda

[Guest Julia59]

I did not care for Zelnorm---made me feel funny---and gave me runs---it would take about 2 hours and I was in the bathroom. My stomach/gastro motility is good---it's my bowel motility. I thought the drug was used mostly for bowel motility issues.

I'm wondering if it's TOO MUCH elasticity----in the gut/bowel. It seems like it takes a good long while for me to fill up and nothing comes out until i'm full it seems. With EDS, doesn't that mean too elastic in the collagen? I wonder if the bowels just hold a lot more due to the elasticity, and that is why things take longer to pass. From what I read it seems folks who are affected in the organ/vascular type they need to be watched very carefully. That might explain a loose sphincter on the esophagus---thus the reflux.

Don't quote me on any of this---just trying to make sense out of what I read so far on EDS.

I know a lot of people have done well on Zelnorm, but i'm not sure it's been out long enough for me to feel comfortable with it. It just made me feel kind of icky----

I hope you get some help to feel better---all over. I know you have been having a pretty rough time lately----i'll be thinking good thoughts for you....

Julie :0)

[Guest Belinda]

Before they knew I had POTS a Gi doc. tried me on it...it had made my symptoms of dizziness worse and also gave me severe diarrea(severe).

I was told once I had POTS diagnoses that Zelnorm is not good becasue of the POTS..as it contains some sort of serotonin or soemthing similar in it.

But everyone is different..have you tried Protonix for your GERD??

Take care..sorry to hear of your tummy troubles!

Belinda

[Sunfish]

nina et al -

apparently i seem to be the lone ranger on this one, but i have had zero problems on zelnorm & it has helped me immensely. last spring it was the first thing that "kicked off" my GI tract at least a bit and allowed me to keep food down. i'm on the highest recommended dose (6mg BID) and not once has it made things too speedy for me..if you get my drift

and to clarify for those who were mentioning it only being for slow intestinal transit, while that is currently the only officially approved used, there has been (& is) testing going on that shows it increases motility from top to bottom....including the stomach. it's thus being considered for use in gastroparesis (the testing i believe is particularly in diabetic patients who have gastroparesis from autonomic neuropathy).

i'm not saying that it is the answer &/or good for all...if nothing else we should all realize by now that we're all different...but it does concern me a bit that there seem to be a number of docs saying that it's an absolute no-no for those with POTS. if speaking of an individual patient that's one thing but such a sweeping generalization could keep something away from someone who could do well with it. for me some docs think i have PAF rather than POTS but regardless.....zelnorm was the first thing that started to decrease the number of times i was vomiting and allowed me to keep some solid food down.

since i've been on it i've seen a number of docs - neuros, pharms, cardios, GIs, internists, etc. - who are at least semi-versed in autonomic dysfunctions and none have indicated any second thoughts about my being on it.

as a sidenote, dr. grubb had actually tried to prescribe zelnorm for me awhile back (about 4 yrs ago?) b/c of some bloating/constipation but at the time it definitely wasn't urgent/emergent so when my insurance company said no (the med had just come out) i didn't pursue it at all (as i wasn't really sure i wanted to take it anyway). i have different insurance now but i've had no problem getting it this past year.

i know some others have had some luck with it as well but can't recall who at the moment. (i do think leah takes it but at really small doses...)

melissa

p.s. i am just about ready to come strangle some people for you nina to try to get you some help for that headache...i cannot believe that you're still fighting it. wish i could do something

[DSM3KIDZ]

I just got the runs. About 15x each time I would take 1/2 a dose. Other than that I had no other side effects.

Sorry to hear about your on going headache...it must be miserable.

Hang in there.

Dayna

[Guest Julia59]

Sunfish,

I wish Zelnorm would work for that poor girl I sent a post out for last week---actually for her dad.

The Cleveland Clinic wants to put in an abdominal pace maker.

Anyway, Dr. Grubb didn't say a word about my PCP prescribing it to me back in 2003. I'm gathering he approves of the drug for people with POTS/dysautonmia who have motility issues. Everyone IS different---while I can tolerate wellbutrin---a LOT of other people with dysautonomia can't.

I didn't get terribly sick from Zelnorm, just didn't make me feel right. And my situation is not urgent---knock on wood---I do not get nauseated much---and haven't vomited since I had my neck surgery, and that was from the anesthesia. The last few times I got nauseated was when I had really bad hyper-adrengic spells, and I almost got sick when I had the lidocaine for the minor procedure to insert the loop recorder.

I am always bloated though---and really have a lot of trouble with slow bowel motility.

I think it's pretty cool that the drug has worked out so well for you----especially since it helped with gastro motility too. I did not realize the other benefits of the drug yet.

Did you guys see that commercial for yogurt?---I think Dannon---but it said it helps with digestion within two weeks.

Since I'm not in a urgent situation, I try anything I can that is not through a prescription.

Nina---I sure hope somebody does something soon about those headaches your having-----I can only imagine the misery your in right now-------Wishing better days ahead for you.

Julie :0)

[MightyMouse]

I'm just not myself with the headache. Some days are better than others, but today started off at about 4am with the headache actually waking me up. Needed my sunglasses and no radio driving in to work. Makes me edgier and not as nice as I usually am... so far, it's been 32 days straight with the same right-sided ache. I'm SO hoping my neuro will help me.

As for the Zelnorm, I'll only be on a very small dose --1/4 of a 6mg pill, starting once a day. I'll be filling the rx tomorrow. I talked to the gastro, and he told me that if it didn't agree with me, it would be 3 doses before it would be out of me (it's twice a day dosing, so that's a day and a half).

I have gastroparesis and slow transit the length of my gi system. This was also true of my long-gone gallbladder. Rather than over-stretch, as you might think, my gallbladder was atonic and atrophied. A normal gb is about the size of a small banana--mine was smaller than one's littlest finger when it was removed (Teri was the surgeon's assistant on my case, so "knows me inside and out" is what I've been told). For me, with EDS, I think it's that my system doesn't have the tone to get the peristalsis going (er...or me "going"). Sorry, bad pun

Nina

[Guest Julia59]

Nina,

I wish I could find that medical article on EDS---I thought I sent it too you---it was on EDS and digestion.

UGGGG----right now my peristalsis is not good---and my tone is terrible---thus this bloated gut. The one thing good about the hyperadrengic spells is that it sometimes gets my gut moving. When the spells calm down----my guts are back to moving slow.

You worry me with those headaches---I'm almost as anxious as you are to find out what the neurologist has to say.

The gallbladder thing---well i'm afraid to see where I'm at with that. I think I'm not too bad---worked 60% in 2001. If it's still the same---I'll hang on to it. It's that diverticulosis in my small bowel. It's in a bad spot near the jejunim which is near the duodenum and the ileum. I don't know if you remember my post about my ER visit. Anyway it was a wasted visit, but Bev and Dr. Grubb wanted me to go because I had a 16,000 white blood count---which I didn't think was bad, but since I had abdominal pain---they said go to the PCP today or the ER if I couldn't see the PCP.

I know it was the corn I was trying to avoid in some vegetable soup I ate----it had tons of corn---and I think the soup was bad. It went right through me---and that is rare for me. But I was shocked to wake up in the middle of the night with horrible pain---none like I ever had before in my mid right gut. It was a rolling spasm type pain that came in waves like labor pain. It felt like a tennis ball was trying to pass though my small intestine.

At first I thought it was the gall bladder----but it was a little lower. I think the spell was long over with, but on my visit to Bev that following Monday for the hyperadrengic attacks I brought up having a CBC done. The white count showed high after the spell with my gut, but I still had mild pain in my gut, and that is why she wanted me to go to ER. The ER doc said I strained my spleen from the gagging----and that raised the white count-------------------hmmmmm

Sorry to ramble, but in the EDS article it states that some people with EDS may have diverticuli in the small bowel near the jejunim are----interesting--I wonder why.

Julie :0)

[MightyMouse]

Yes, I remember the article your speaking of...and I think I have a hard copy here at home somewhere...and a copy I gave to my gi doc. I did have a full gi series in 2004, including a small bowel series. what a treat. NOT.

I'm wondering if this headache is related to my backache... my spine has been hurting and I'm wondering if the nerve roots are cranky, and that's spreading up to my head/scalp? I don't know. Grasping at straws here. I did get some relief from my pain meds today, and I just took some muscle relaxants to see if I can have some peace.

Thanks for all your kind thoughts and words (all of you, not just one person). Nina

[morgan617]

My GI doc won't give me anything for anything. He thinks it would give me diarrhea and I think he's right. I have horrible motility and IBS + IBD. I'm down to one meal a day mid afternoon.

I wish I could help more. Hope you feel better....morgan

[Guest Julia59]

Nina---I know this sounds simple----but sometimes ICE helps me-----with the swelling.

I have one of those wrap around ice packs----the insert is a gel like substance enclosed in a flexable plasic that is durable---and stays flexable---then you insert it into a pocket inside a cloth material with velcro.

I keep it in the freezer. It can be microwaved also. I wrap it around my neck and velcro it-----also great for hot summer days to keep neck cool. Or I open and lay it lengthwise on my spine all the way from the back of my head--and down my neck and spine.

I might get a few hours relief if I take it easy and not do anything physical.

Pain in your spine can give you a headache. Dr. Heffez and Dr. Bolognese from NY told me that the stenosis in my neck and lower brain stem can make my whole body hurt. I still find that hard to believe-----as I could swear those two herniated/bulging disks on c-7/t1 and t1/t2 are what is giving me the crippling/take your breath away pain---and spasms. Any headache pain I get is usually only in the rear of my head---and if it gets bad enough it will move to the front of my head.

Do you have a lot of ear fullness? My CSF is partially blocked posteriorly, and that can cause headaches. If it becomes almost fully blocked or completly blocked then you risk getting Syringomyelia (sir-RING-o-my-elia) occurs when a tubular cavity (syrinx) develops within the spinal cord, caused by an obstruction of the CSF circulatory pathways.

Keep us posted.

Julie :0)

[MightyMouse]

I actually have a "MigraCap" which is essentially a lycra hat with sewn-in pockets that are filled with gel--you store it in the fridge or freezer and then wear it when your head hurts. Teri calls it my "helmet". I can't remember if it was someone here (Mary?) or at the EDS forum who told me about the cap, but it's been a lifesaver the past few weeks. You can only get it from the maker in the UK--and it's pricey (70$), but worth the money when it makes the headache quiet down.

Last night was brutal. I came home, took the muscle relaxants and fell asleep on and off for seveal hours. Teri then made me a quick dinner at my request--a bagel with cheese--and then I took my evening meds and slept for another 12 hours! I'm still very sore this am and my head still hurts too.

Nina

[MightyMouse]

Thought I'd fill you all in that so far, so good. The first day, I took 1.5 mg in the am and again in the pm. Today I took 3mg at each dose. I haven't had the runs, or any other side effect...other than the one we were looking for, which is that I "went". I'll fill you in if things should change.

Nina