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10:46pm October 8, 2013
This is all of my nausea meds. I get frustrated when I hear people say “I tried Zofran (and maybe one other med) so nausea meds don’t work for me."  Not frustrated with the person, but very frustrated and angry with their doctors. There are a LOT of nausea meds out there. There are sometimes risks to combining them, but they can be combined for some people, if you’re careful. My doctor hates giving lots of meds at once, but it took ALL SIX of the meds to get me out of the hospital last fall. The final one they added was Marinol (Dronabinol) and it was like magic. It’s a pain in the butt to put into feeding tubes though because it only comes as this weird spherical capsule that you have to slice open and squeeze the inner liquid into some water. The picture shows Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Ondansetron (Zofran), and Phenadoz (Phenergan). In the picture, Benadryl, Reglan, and Ativan are liquids. Phenergan is a suppository. Zofran melts under your tongue. And Marinol is a spherical capsule with liquid inside. The only one that gives any compatibility problem for feeding tubes is Marinol because you have to cut open the capsule and squeeze it into water and is very difficult. Ever since I got my feeding tube I’ve been able to drop the Zofran and Ativan down to PRN, and the Benadryl is both PRN and regularly scheduled. Before that I had to take all of them every day. That meant a whole lot of sedation. It also many the hospital breaking its own rules and giving me Phenergan even though I’ve reacted to it – but also taking the Benadryl, I’ve never had another reaction. The reason they were willing to risk all this is I had been in the hospital for five weeks and was only getting sicker. But I hear these stories where people with severe nausea from gastroparesis are given one or two nausea meds at a time then told nausea meds just won’t work for them… It makes me so mad. My doctors have not always been the greatest but they were able to get me out of the hospital using these things together. Also Marinol, as it does for me, works really well for a lot of people where the traditional nausea meds just aren’t doing enough even in combination.  There are risks with a lot of these meds but constant vomiting was deemed a worse risk than tardive dyskinesia, for instance. I hate neuroleptics but I’m on one because it’s all that works. Right now the treatments I use for nausea are: 1. All of these meds. 2. J tube for all food, water, and medicines. 3. G tube for drainage. I both drain it on my own (I will post techniques one day, it’s way more complicated than just opening the tube and holding something under it), and use a suction drainage bag afternoons and nights. 4.  I was emetophobic as a child and I learned all these mental techniques for not vomiting even when very nauseated. I use those too. But with the other treatments I need them less. It doesn’t get rid of all my nausea.  But I haven’t vomited once in months. I’ve come close when my g tube stopped draining for a day.  But I haven’t actually thrown up. Which is amazing considering my gastroparesis is severe enough that I easily aspirate stomach acid constantly unless I drain it, because it just builds up in my stomach. I’m sharing this for anyone whose doctors have NOT tried some of these meds, or tried combining them.  Doctors should make the final decision and I’m not a doctor, but IMHO if a person can barely eat or drink because they’re throwing up all the time, then it’s time for drastic measures. Not everyone can tolerate these meds but there are ways to tweak doses (I can’t take full dose Reglan so I take half dose) too. I just… Argh. I wish fewer people were throwing up all the time. I wish doctors were trying more options. I wish more people had insurance and that it approved more meds for more people. But it’s also important to be realistic and as precise as you can, when you talk to a doctor.  Months ago I saw someone say that she hadn’t ingested a drop of water or a bite of food in six months, did not have a feeding tube, was not on IV fluids or TPN, and was still alive. A doctor won’t take that seriously because you’d starve and dehydrate in a fraction of the time. Tell them how serious it is but be accurate at the same time. It’s hard enough to be believed when you are being exactly accurate about your food intake. Even if it FEELS like you’ve never gotten to eat or drink, if you’re not literally at death’s door after a couple weeks without any medical treatment, you are keeping something down.  But it’s still really serious and I see a lot of people who are throwing up many times a day and their doctors don’t seem to care or have given up. It’s important to fight if you can.

This is all of my nausea meds.

I get frustrated when I hear people say “I tried Zofran (and maybe one other med) so nausea meds don’t work for me."  Not frustrated with the person, but very frustrated and angry with their doctors.

There are a LOT of nausea meds out there. There are sometimes risks to combining them, but they can be combined for some people, if you’re careful. My doctor hates giving lots of meds at once, but it took ALL SIX of the meds to get me out of the hospital last fall. The final one they added was Marinol (Dronabinol) and it was like magic. It’s a pain in the butt to put into feeding tubes though because it only comes as this weird spherical capsule that you have to slice open and squeeze the inner liquid into some water.

The picture shows Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Ondansetron (Zofran), and Phenadoz (Phenergan).

In the picture, Benadryl, Reglan, and Ativan are liquids. Phenergan is a suppository. Zofran melts under your tongue. And Marinol is a spherical capsule with liquid inside.

The only one that gives any compatibility problem for feeding tubes is Marinol because you have to cut open the capsule and squeeze it into water and is very difficult.

Ever since I got my feeding tube I’ve been able to drop the Zofran and Ativan down to PRN, and the Benadryl is both PRN and regularly scheduled. Before that I had to take all of them every day.

That meant a whole lot of sedation. It also many the hospital breaking its own rules and giving me Phenergan even though I’ve reacted to it – but also taking the Benadryl, I’ve never had another reaction.

The reason they were willing to risk all this is I had been in the hospital for five weeks and was only getting sicker.

But I hear these stories where people with severe nausea from gastroparesis are given one or two nausea meds at a time then told nausea meds just won’t work for them… It makes me so mad. My doctors have not always been the greatest but they were able to get me out of the hospital using these things together. Also Marinol, as it does for me, works really well for a lot of people where the traditional nausea meds just aren’t doing enough even in combination.  There are risks with a lot of these meds but constant vomiting was deemed a worse risk than tardive dyskinesia, for instance. I hate neuroleptics but I’m on one because it’s all that works.

Right now the treatments I use for nausea are:

1. All of these meds.

2. J tube for all food, water, and medicines.

3. G tube for drainage. I both drain it on my own (I will post techniques one day, it’s way more complicated than just opening the tube and holding something under it), and use a suction drainage bag afternoons and nights.
4.  I was emetophobic as a child and I learned all these mental techniques for not vomiting even when very nauseated. I use those too. But with the other treatments I need them less.

It doesn’t get rid of all my nausea.  But I haven’t vomited once in months. I’ve come close when my g tube stopped draining for a day.  But I haven’t actually thrown up. Which is amazing considering my gastroparesis is severe enough that I easily aspirate stomach acid constantly unless I drain it, because it just builds up in my stomach.

I’m sharing this for anyone whose doctors have NOT tried some of these meds, or tried combining them.  Doctors should make the final decision and I’m not a doctor, but IMHO if a person can barely eat or drink because they’re throwing up all the time, then it’s time for drastic measures. Not everyone can tolerate these meds but there are ways to tweak doses (I can’t take full dose Reglan so I take half dose) too.

I just… Argh. I wish fewer people were throwing up all the time. I wish doctors were trying more options. I wish more people had insurance and that it approved more meds for more people.

But it’s also important to be realistic and as precise as you can, when you talk to a doctor.  Months ago I saw someone say that she hadn’t ingested a drop of water or a bite of food in six months, did not have a feeding tube, was not on IV fluids or TPN, and was still alive. A doctor won’t take that seriously because you’d starve and dehydrate in a fraction of the time. Tell them how serious it is but be accurate at the same time. It’s hard enough to be believed when you are being exactly accurate about your food intake. Even if it FEELS like you’ve never gotten to eat or drink, if you’re not literally at death’s door after a couple weeks without any medical treatment, you are keeping something down.  But it’s still really serious and I see a lot of people who are throwing up many times a day and their doctors don’t seem to care or have given up. It’s important to fight if you can.