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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/19/12 6:50 P

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Thank you for your input. I agree that everyone reacts to medications in different ways. That's just the nature of medicine - no 2 humans are exactly the same. That's why it is extremely important to work with a doctor that knows the medication and knows when it's working or when something is going wrong. Even so, as you said, researching medications and treatments is becoming more and more important. Doctors are supposed to explain what a medication is for, what should happen, what should not happen, and what dangerous effects to watch for. But since many doctors don't know enough about less common medications and often forget to talk to the patient this doesn't happen enough. Some doctors also think it's up to a pharmacist to explain all of this to the patient, and while many pharmacists do have a better understanding about many medications, they can't give you all the information a person should need. So when a patient reviews medication information themselves, they can see what to watch out for and if something seems to be going wrong they can review the information and bring it up to their doctor.

I, myself, was given anti-depressants and anti-anxiety meds for many years without anyone attempting to figure out or treat the causes. Over the years when I'd say it wasn't working right or I didn't feel right they would bump it up more. Finally, they overdosed me but when I called the doctor because the effects were severe (I could barely speak and could barely understand what people were saying to me) she ignored me. I ended up in the ER and after they saw the medications I was on they sent me home saying I was having tooth pain. It was an eggregious error as the overdose could have killed me if I kept taking it. Instead I stopped everything dead cold (not a good idea at all, but I was desperate at the time and no doctor seemed to be able to listen to me). Even a year later I was still dealing with the effects, and it's probable that the overdose and subequent rapid detox was one of the factors for why my GP suddenly got terrible. It also makes me wonder if the reason there are so many more cases of GP showing up in the last few years to a decade is because of the constant use of SSRIs (selective seratonin reuptake inhibitors) by doctors who don't understand the effects; most of the seratonin in the body is in the GI tract so messing with it undoubtedly messes with digestion.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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5/19/12 1:01 A

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I have always been a nausous eater even as a kid. It didnt matter what I eat or how much I ate. I'd always get so sick afterward. Then I was diagnosed with G.P and even with sticking with my diet I still had the same problem. So my doctor (at the time) put me on Reglan, saying it was just because I couldnt digest good that I felt like that. I told him that I'd try it if he kept it at a low dose because I'm always afraid any medicine will conflict with my Fibromyalgia meds.
Anyways, I went and picked it up from the pharmacy and a couple of hours later we had supper. I stuck to my GP diet, and took the Reglan, and not 30 minutes later I had hearburn like I've NEVER had before!!!! I was in so much pain that lasted even into the next day. So I called the doctor and talked to him about the isssue. He said he gave me the lowest dose, and that its probably my bodies way of getting use to it. So I tried it for a full week, and it was the worst week of my life! I stopped taking and never looked back.
I kept up with my diet, and still get a little nausous every other day or so, but its still not as painful as it was WITH taking Reglan. But thats just MY experience with it. Not everyone has that problem. I do just want to remind everyone that Reglan is NOT a medication thats meant to be taken long term. Its only suppose to be taken for 6 consecutive months tops, after that if the issue persists your suppose to go back to your doctor for new treatment/tests. No matter what medication a doctor gives you, always do your research on it.
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After one ex-doctor prescribed me an antibiotic with a certain antidepression that has a deadly combination if taken to long, I started researching EVERYTHING! Its always better safe then sorry.

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
4/26/12 3:41 A

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Domperidone takes 6-8 weeks before it becomes fully effective. If you're getting some help from it within the first 2 weeks you're doing good. Just stick with it. As you start to feel better you should be able to (with your doctor's okay) occasionally test your progress by eating one food or one meal slightly out of your comfort range. It's a good way to know how well it's working, especially if you're like me and don't have vomiting, only pain after eating incorrectly. I do really hope it helps.

The hard part about Reglan is the risk of permanent damage or death rises quickly and usually after only 3 months the risk is too high. I'm glad my doctor never tried putting me on it, as medication side effects usually hit me quite hard. I stopped the Domperidone a few weeks back. I had an allergic reaction that turned into an infection around my PICC line. While it was just the allergic reaction I couldn't figure out what was causing it - could be one of several medications, or all of them. So until we can figure out which medication it was through some type of testing, I can't try going back on it.

I hope the Domperidone helps and you'll be able to find some relief soon.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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SIERRA551 Posts: 16
4/22/12 4:48 P

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I was taken off of Reglan due to tremors. I was started on Domperidone that helps. I usually drink carnation breakfast twice a day and eat one low fat low fiber meal. It's the only thing that gets me ok to work with this gastroparesis.

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/20/12 10:28 P

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I'm glad you contacted her and you will be trying other options soon. In the meantime, be extra careful of what you eat. Hopefully she will have some good ideas about what to try next.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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LEYWREN SparkPoints: (0)
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2/20/12 9:03 P

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I talked to my doctor today, and she told me to stop the Reglan immediately. She said if the tremors don't stop that she wants to check thyroid levels, and we'll talk about other options when I see her next month.



1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/19/12 11:54 P

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There are ALWAYS other options. Just keep trying, asking questions, and learning about the condition to know what you can do to help yourself.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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LEYWREN SparkPoints: (0)
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2/19/12 12:51 A

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I'm going to call her monday morning and see what we should do. Just sick of feeling like my only option is to stay on a liquid diet. Thanks for the support ladies, it helps a lot.



1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/18/12 5:19 P

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Amy (Andrews_Mom) just posted on my last blog about her using Reglan and having to stop because of tremors. So DEFINITELY talk to your doctor IMMEDIATELY. Reglan is usually supposed to only be used for a few months because the side effects can become very severe and I've heard a few people have lost their life because of the side effects. As soon as you're showing the side effects like tremors you need to talk to your doctor. Ask about other treatment options (there are several others) and see what they can do. Domperidone is helping a lot of people, but not all doctors are able to get the medication because it is not fully approved by the FDA (I believe it is in the final stages). I'm on it at a double dose; unfortunately it is not working for me. I've found my case of GP is a different cause than most people and isn't responding to the typical treatments well. Even so, there are still surgical options available and my GI doctor will be reviewing those soon (he is one of the two doctors who created the gastric pacemaker) for me.

With GP, it is very important to keep your doctor informed and keep trying the different treatments that are available. In time, you should find something that works. GPACT has said that a drug manufacturer and the FDA are working together to find some more options that work better for us, but those are several years away.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
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My sparkfriends are my greatest support and I'm grateful for it.
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2/18/12 2:39 P

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I've never been on that, but I would call the doctor and tell him what symptoms you are having.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

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2/18/12 12:14 A

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Does anyone else use reglan? I've been using it since last summer because the antibiotics made my stomach hurt worse. I'm able to eat better with the reglan, but I've started having some muscles issues. Like my legs and arms shaking for no reason. I'm thinking I should talk to my dr about it, but don't want to go back to being so sick at my stomach all the time, is that crazy?

Kelley



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