Daily Nausea

[Christy_D]

My son was diagnosed with autonomic dysfunction in June. We went to Cleveland in October to seek help from the people who know about it. He used to experience abdominal cramping, weak legs, body temperature too hot, migraines, nausea and dizziness. He was diagnosed with POTS, autonomic neuropathy and gastroparesis.

With medication, we have been able to get all of the symptoms under control, except for the nausea. He wakes up every day nauseated, and he is unable to get out of bed until about 2:00 in the afternoon(on a good day). He is 14 and has not attended school since last February. He in on homebound schooling and is taking on-line classes. We go back for further testing in January.

He has tried every over the counter medication for nausea, no help. He has also been prescribed several medications, no help. What does anyone else do for their nausea? This seems to be the last stumbling block we have in getting him back to school and having a social life.

He is currently taking Fludrocortisone, Doxepin, Erythocin, and thermatabs.

[KristinL]

Hi CHRISTYD --

I don't get nausea at awful as your son does by any means but when I do I suck on spearmint candy. Sometimes it takes a half dozen or so but the nausea does subside. I know that probably is not much help but I thought I would share what I found works for me

I hope your son finds relief soon!

Kristin

[Stace915]

I would suggest that you try and take him off the thermotabs and see if that helps. Instead you can try things like boullin cubes in hot water (you get used to drinking it)...depending on how many of the thermotabs he takes a few cups of it throughout the day , or gatorade with salt in it. I used to take the thermotabs, in the beginning they didn't bother me at all, then they started to make me nauseated every time I took them...now I can't take them at all. I vomit immediately after taking them and the weird thing is even if I have a full stomach all that comes up is the thermotab and water no food. They are really difficult on the stomach.

I have also found that heartburn/reflux medication seems to help me.

[Lenna]

Nausea was one of my son's primary POTS symptoms. We finally saw a gastro doctor who prescribed Domperidone. You have to have it compounded at a compounding pharmacy, or order it from another country (which is less expensive). Now I would say that while still present, nausea is one of his less severe symptoms. If only we could do something about the fatigue and dizziness!

[brownsea]

its one of my main symptoms too. i was on a brand of domperidone which seemed to do the trick. then the pharmacy changed them.

at the moment im back to my own tricks until i can find the brand i was on.

i slowly chew peppermint gum, sea bands for your wrists, the accupressure points, small portions.

i cant want to get the nausea tabs back!

can i ask what thematabs are?

[Christy_D]

its one of my main symptoms too. i was on a brand of domperidone which seemed to do the trick. then the pharmacy changed them.

at the moment im back to my own tricks until i can find the brand i was on.

i slowly chew peppermint gum, sea bands for your wrists, the accupressure points, small portions.

i cant want to get the nausea tabs back!

can i ask what thematabs are?

Salt tablets. His nausea predates any of his current medications though.

[Brye]

I take zofran for my nausea. Phenergan has helped but makes me too sleepy. The zofran helps my nausea but doesn't make me sleepy!

Brye

[PattiL]

Brye is on the same page as my daughter Chrissy. Zofran is the drug of choice and I don't know what she'd do without it!

[Christy_D]

Brye is on the same page as my daughter Chrissy. Zofran is the drug of choice and I don't know what she'd do without it!

He has already tried Zofran, and no luck. Thanks though.

[Lenna]

Zofran didn't help my son either. Domperidone is the only thing that has helped his nausea.

[MelissaCrystal]

I used to take handfulls of ginger pills and it would cut the edge off the nausea and at least let me get out of bed. But sometimes it was rough on my stomach.

[Kitsakatsa]

Not to beat a dead horse, but....

Has he tried 12 mg of Zofran? Doctors like to prescribe 2mg and that does nothing. When I get into 12mg and beyond, then something starts to take effect. Chemo patients are allowed 24mg. I've back to backed the Zofran so that it overlaps to 24mg and that is when it is a little more effective. Also, the IM injections tend to work much, much better than the pills. Its also cheaper because home health can get it for you and it counts as you out of pocket for the year, usually.

Compazine is my frontline med. Nausea is my main symptom and Compazine makes life bearable.

Also, think about Clonidine. Something magical happened when I started taking it at night. The nausea the next morning was cut in half. I don't know why. My doctor tried it on a whim for nausea and it worked! Its traditionally given to lower blood pressure, which is wierd. Somehow the body does a counter move that helps POTS. It has been a big, big help!!! Could do without the funny hallucinations at night, but then I'll go through about anything to decrease the nausea.

Hope this helps,

Kits

Ps. Be careful with Anzemet. Reactions include heart block and dangerous plummeting blood pressure. I went into shock on it when the ER gave it to me. I don't know if all POTS patients might react the same way. Also, watch out for Inapsine. Apparently most people who are administered it have a bad reaction to the point where I had to beg the pharmacy to even release it to an outpatient and I wish I wouldn't have. If he tries either of those meds, keep an eye on him.

[Janey]

I'm like KitsaKatsa, nothing hits the nausea where it hurts better than compazine...

if you can let us know what you've tried so far, I might be able to help with alternative pills?

Janey

[anna]

Hi I just put a post up about a med called Metoclopramide my sons GP has just prescribed this drug for my sons GI issues.

[Christy_D]

I'm like KitsaKatsa, nothing hits the nausea where it hurts better than compazine...

if you can let us know what you've tried so far, I might be able to help with alternative pills?

Janey

He has taken reglan, zofran 8mg, diazapam 5mg, periactin 4mg, trimethobenzamide 300 mg, meclizine 12.5 mg. We have tried everything over the counter, including the wrist bands. His physical therapist showed him on his hand where to apply pressure to reduce nausea, nothing works. We go back to the doctor in January, and I would like to show them a list of other possibilities that have helped other people.

[juliegee]

My heart breaks for you & your son. This was my son's biggest problem as well when he was 12 y/o. He missed a whole year of school. He is 17 y/o now and back full-time. Have hope!

I have a few questions for you. How much erythromycin does he take and when? Often pediatric GI's (even the best!) prescribe this in too high of a dose. It ends up actually nauseating the patient. The trick is to irritate the tum just enough to get it to empty more quickly. Just a tiny, tiny amount can sometimes do the trick, like 1/4 to 1/2 tsp about 15 mins. prior to breakfast. It's also important to take a dose before going to bed in the PM to try to move any food that's left in the GI tract through to prevent morning nausea.

Propping up the head of his bed with a few bricks might also be helpful. My son also kept pretzels in his pocket and ate them throughout the day to calm things down. Make sure he bathes or showers the night before as that heat in the AM will worsen things and make him more nauseous.

I notice that your son hasn't tried phenergan. It has a strong sedating effect, but works as the patient sleeps off the worst of the nausea. Might help at night. Kytril is another one, but we found zofran to actually be a little more effective. Any anti-nausea med will worsen his motility so it's a trade-off.

I'll never forget the wristbands. My son even put them on his ankles, trying to help- so sad I hope he's better soon.

Hugs-

Julie

[megan2]

Okay, my opinion on nausea meds:

1) Zofran--8 mg ODT, it is important that they are the dissolvable ODT kind...do not bother with the tablets! I would not go above 8 mg...they tried to keep increasing my dosage at one point when Zofran stopped being effective...increasing beyond a certain point can be dangerous...using in high amounts for chemotherapy is different because they use a high amount and then none at all for day....in your son's case it would be chronic use.

2) Kytril Patch (Sancusco) If Zofran is sort of working but not well enough, it might be worth it to try Kytril a similar med, in patch form. However, keep in mind that the patch is expensive.

3) Domperidone can be very useful, and is generally safer than Reglan. HOWEVER, make sure you check with a cardiologist. Dangerous QT prolongation can occur and is why I had to stop taking domperidone..although domperidone was fairly effective for me.

4) Benadryl--will worsen motility big time... but can be effective for nausea, and is safe.

5) Anzemet--wouldn't bother with if Zofran and Kytril didn't work. It was even more expensive, and not that effective.

6) Klonopin--.125-.25 dissolvable wafers can be VERY effective for nausea (can use Ativan instead, although in my opinion Ativan has more side effects)

7) Emend--this is what I'm going to try next...no idea about it yet, but I have been told that it is extremely effective although expensive

8) Marinol--haven't heard too many good things, but haven't tried it myself

9) Eythromycin in a VERY small dose

10) Phenergan, Compazine...these are older, sedating and can have nasty side effects, however for some people can be extremely helpful.

[Christy_D]

My heart breaks for you & your son. This was my son's biggest problem as well when he was 12 y/o. He missed a whole year of school. He is 17 y/o now and back full-time. Have hope!

I have a few questions for you. How much erythromycin does he take and when? Often pediatric GI's (even the best!) prescribe this in too high of a dose. It ends up actually nauseating the patient. The trick is to irritate the tum just enough to get it to empty more quickly. Just a tiny, tiny amount can sometimes do the trick, like 1/4 to 1/2 tsp about 15 mins. prior to breakfast. It's also important to take a dose before going to bed in the PM to try to move any food that's left in the GI tract through to prevent morning nausea.

Propping up the head of his bed with a few bricks might also be helpful. My son also kept pretzels in his pocket and ate them throughout the day to calm things down. Make sure he bathes or showers the night before as that heat in the AM will worsen things and make him more nauseous.

I notice that your son hasn't tried phenergan. It has a strong sedating effect, but works as the patient sleeps off the worst of the nausea. Might help at night. Kytril is another one, but we found zofran to actually be a little more effective. Any anti-nausea med will worsen his motility so it's a trade-off.

I'll never forget the wristbands. My son even put them on his ankles, trying to help- so sad I hope he's better soon.

Hugs-

Julie

My son takes 250 mg tablet in the morning and another one before bedtime. Since taking this for the last month, his nausea hasn't gotten any better or worse. No effect really. We are also tracking how often he goes to the bathroom, (BM). He is still constipated. So his stomach might be emptying quicker, but he only has BM's every 3 to 5 days. Sometimes only after giving him a laxative(which he hates!).

As for the head of his bed, we bought him an adjustable bed(like in the hospital). Although, frequently, when I go in his room in the morning he is still laying flat. I guess I should prop up the head of the bed and then take the remote with me so he can't flatten it back out.

Thanks for the input,

Christy

[juliegee]

Christy,

I hung around the Yahoo Gastroparesis support group (when my son was his sickest) and learned more about delayed GI emptying than I ever wanted to know . My information comes from the patients themselves (and their parents ). The tablets rarely work and that dose is HUGE. It could actually be making him more nauseous. See his GI and ask if you could try a liquid form called Ery-Ped 200. Just a 1/2 tsp in the AM before breakfast & a dose at night could make a huge difference.

I think the liquid "E" will help with the constipation too. It did for me & my son. It should calm the nausea, make him more hungry, and able to eat more. If he still needs extra help, consider Miralax. It might be difficult for him to take as it's dissolved in water, juice, gatorade- he has to be able to drink it. Any back-up anywhere in the GI tract (even constipation) can make nausea worse. Also, whether he feels it or not, he's probably dealing with reflux. Make sure that's being treated too. I have my fingers (and toes!) crossed that he's feeling better soon.

I have one other quick question. The doxepin caught my eye. It's a weird med for your son to be taking. I took it when my chronic urticaria was at it's worst and I was actually having some anaphylactic symptoms. Does your son deal with allergy-type issues of is he using it for the antidepressant effect? It's also heavily sedating and made me so HUNGRY I could eat a car. That's probably helpful for him now Just curious, because if he's got allergy symptoms....he might be dealing with something else.

Julie

[Christy_D]

Christy,

I hung around the Yahoo Gastroparesis support group (when my son was his sickest) and learned more about delayed GI emptying than I ever wanted to know . My information comes from the patients themselves (and their parents ). The tablets rarely work and that dose is HUGE. It could actually be making him more nauseous. See his GI and ask if you could try a liquid form called Ery-Ped 200. Just a 1/2 tsp in the AM before breakfast & a dose at night could make a huge difference.

I think the liquid "E" will help with the constipation too. It did for me & my son. It should calm the nausea, make him more hungry, and able to eat more. If he still needs extra help, consider Miralax. It might be difficult for him to take as it's dissolved in water, juice, gatorade- he has to be able to drink it. Any back-up anywhere in the GI tract (even constipation) can make nausea worse. Also, whether he feels it or not, he's probably dealing with reflux. Make sure that's being treated too. I have my fingers (and toes!) crossed that he's feeling better soon.

I have one other quick question. The doxepin caught my eye. It's a weird med for your son to be taking. I took it when my chronic urticaria was at it's worst and I was actually having some anaphylactic symptoms. Does your son deal with allergy-type issues of is he using it for the antidepressant effect? It's also heavily sedating and made me so HUNGRY I could eat a car. That's probably helpful for him now Just curious, because if he's got allergy symptoms....he might be dealing with something else.

Julie

[Christy_D]

Christy,

I hung around the Yahoo Gastroparesis support group (when my son was his sickest) and learned more about delayed GI emptying than I ever wanted to know . My information comes from the patients themselves (and their parents ). The tablets rarely work and that dose is HUGE. It could actually be making him more nauseous. See his GI and ask if you could try a liquid form called Ery-Ped 200. Just a 1/2 tsp in the AM before breakfast & a dose at night could make a huge difference.

I think the liquid "E" will help with the constipation too. It did for me & my son. It should calm the nausea, make him more hungry, and able to eat more. If he still needs extra help, consider Miralax. It might be difficult for him to take as it's dissolved in water, juice, gatorade- he has to be able to drink it. Any back-up anywhere in the GI tract (even constipation) can make nausea worse. Also, whether he feels it or not, he's probably dealing with reflux. Make sure that's being treated too. I have my fingers (and toes!) crossed that he's feeling better soon.

I have one other quick question. The doxepin caught my eye. It's a weird med for your son to be taking. I took it when my chronic urticaria was at it's worst and I was actually having some anaphylactic symptoms. Does your son deal with allergy-type issues of is he using it for the antidepressant effect? It's also heavily sedating and made me so HUNGRY I could eat a car. That's probably helpful for him now Just curious, because if he's got allergy symptoms....he might be dealing with something else.

Julie

He does take a glass of gaterade with Miralax daily. He doesn't have a problem with it(he doesn't like generic brands though). The doxepin was prescribed I believe for his other autonomic issues. They chose doxepin because he also deals with insomnia. When he first started the doxepin it knocked him out and he was sleeping good, but not anymore. He is back to dealing with insomnia also. He was also diagnosed with restless leg syndrome.

The doctor's plan B is Cymbalta instead of Doxepin. I've read that works well sometimes with Abilify(spell?). Since he started the doxepin he rarely has body temperature issues, which he used to deal with alot. He was constantly taking his shirt off and saying it was hot. His abdominal cramping has been decreased. He also would sometimes have legs so weak, he couldn't walk. That too has gone away. So, we are left with this dibilitating nausea.

[extern14]

WOW! He really has tried everything. I was going to suggest Reglan but since that didn't work for him, I am of no help. I am so sorry he is going through this. My gastro told me that not drinking anything 30 minutes before or after meals will help with nausea and it did seem to help me a little, although it is very hard to get used to. Maybe that will help. Good luck. I really hope you find something.

[Lenna]

I apologize for sounding like a broken record...but I know how that nausea can wreck a kid's life! Please ask your gastro about Domperidone. It's made a world of difference for my son.

[Notgivinup]

I know you already tried this but I have to say zofran helped my daily nausea (mornings mostly). Then, out of the blue, for no reason I can think of my nausea vanished, gone.

This autonomic stuff is so weird. It twists and morphs into different versions of itself.

But I just wanted you to know it could just vanish one day, like mine.

[Kitsakatsa]

I forgot about the Marinol. I did take that and it did work pretty well. It gives you the munchies, but I was put on it when I had malnutrition secondary to nausea and it did help me tolerate "heavy" foods and liquids like applesauce and sports drinks. It got me out of getting a feeding tube, which can happen when you have heavy nausea for a long time. It comes in capsule balls that you have to refrigerate. It layers well with higher Zofran doses and compazine.

I'm sure your son's doctor will know the best dosing for him for anything that can be tried.

Hope this helps,

Kits