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cableguy

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Reply with quote  #1 
A little history. I have CVS and have really suffered for 30 years. I finally have went and got help from a gastro doc and was looking for relief and ways to help prevent episodes with the use medications. I was put on **mg amitriptyline and Pantoprazole daily. And for episodes phenegren. Thats it. I have had this for 30 years and phengren doesnt do anything for me. Two things that are causing me to hate life lol. The constant nausea. I mean all day long. And my energy level is non existant. I take B12 but that isnt doimg anything. Please let me know what type of things I can ask doctor to look at. I have brought these things up to her but doesn't seem to be getting through. Any help is great appreciated. Thx
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ginny

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Reply with quote  #2 

You can request that CVSA send your doctor a Professional Pamphlet with information about CVS.  You could also ask him to consult with one of the CVSA Medical Advisors and hopefully gain some insight into not only the current meds you are using but advances with other preventative and treatment options.  For the supplements, riboflavin, a B vitamin is thought to be very helpful but not until CoQ10 has been established (information on the supplements is available on the MB and the CVSA web site as well as pages such as Mito Action).  Many do find some help with LCarnitine (available by prescription or over the counter), CoQ10, some find additional help with Magnesium (thought to be helpful with Migraines) and then a general B vitamin or possible the Riboflavin.  Many do require adjustments in Ami and other preventative meds.

If the supplements are helpful then you might try not fasting by trying a high quality snack before bed or waking middle of the night for the snack. 

Once the Adult Guidelines Study has been completed it will hopefully give doctors more information to help adult patients.  To understand what to expect you can review the Pedi Guidelines on the CVSA web page under the Research tab-- look for NASPHGAN.  

I assume your doctor is familiar with Dr. Fleishers  "Empiric Guidelines"?

On this message board you can find other information on treatments that vary from your doctors standard plan.  KLConner in particular wrote about her need to mix meds to be as well as possible.  The information is not recent but I don't think much has yet changed other than improvement in choices of anti emetics.

Good luck, please let us know how you are doing.


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wynnak

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Reply with quote  #3 
Ginny's info is great as usual. I'm going to suggest that you take other nausea med options to your doctor. That was a huge struggle for us too. They pushed zofran like all the time. We kept telling them it wouldn't work. My son had a violent reaction to Phenergan. The nurses at our infusion clinic were super for this.. they have us suggestion after suggestion for trying. There are times we alternate two different anti-emetics. The one that works the best for him, we had to fight to get.. but we kept pushing for something else. There are quite a few different ones. Keep pushing.
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cableguy

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Reply with quote  #4 
My doctor is no fan of zofram. What anti nausea meds finally worked for you
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wynnak

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Reply with quote  #5 
We use jytril mainly, but also alternate it with Emend. But the kytril is primary. They have tried several.
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rdean

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Reply with quote  #6 
My son never had any relief with zofran.  What gave him a bit of relief was dramamine.  
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rdean

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Reply with quote  #7 
I also should mention that he didn't need to take much dramamine.  He's a teen, but was taking the small child's tablets so he wouldn't get sleepy.  That seemed to be enough.  Another thing that helped was peppermint candy, BUT it had to be Bob's sweet stripes.  This was the only brand that worked, and I believe it is because it had the real peppermint oil in it.  My son had some IBS type issues too (appeared to be diarrhea with constant abdominal pain,) so what seemed to get him over the hump was actually treating for chronic constipation.  Sounds very counter intuitive, but making sure everything is moving daily actually eventually had a dramatic decrease on nausea (and vomiting.) Also has some histamine issues (which is probably why dramamine worked for him.)  But before we figured that out and he was having daily nausea and quite a bit of vomiting, the combination of children's dramamine and the Bob's candy did help the nausea.
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ginny

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Reply with quote  #8 

I am happy to hear that Dramamine helps your son. Maybe others will check with their doctor to try this OTC medication and hopefully find some relief. I think Antivert is the prescription form of Dramamine and depending on copay for health insurance, might offer a less costly alternative to the OTC. The medications that work for CVS seem to have to do with the part of the brain involved.  

Thank you for the information on the peppermint candies. It never occurred to me that some peppermint candy did not contain peppermint.  

The diarrhea being constipation is a theme we have seen on the MB from time to time.  The meds used to treat or prevent CVS can be constipating plus there is the delayed gastric emptying that occurs for many prior to a cycle.  One of the threads regarding this is by BathBoy.  Slowing down the diarrhea with meds triggers more constipation, triggering pain and nausea, possibly triggering vomiting, leading to additional medication that is (usually) constipating=viscous cycle.

I applaud you finding answers and it is great that what is helping does not involve too many meds with side effects of their own.  Thank you for posting about what is working for your son.


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