Medicinal Treatment

Medicated Me

Medicinal treatment possibilities for CVS

The NASPGAHN Guidelines are the current criteria used for the diagnosis and treatment of CVS. I recommend that you print and bring the following article with you to your physician.

Here are some of the commonly prescribed medications for treatment of CVS. This is NOT a complete list. Do not take any of these without consulting first with your doctor. There is no single medication that proves to be the answer for every patient. It is not uncommon for patients to “tweak” their medications and/or dosages after time due to various reasons. My treatments have changed multiple times over the years. This is only some potentially helpful information which you can present to any doctor who isn’t familiar with CVS, for further investigation.

 

Abortive Medications (to stop an episode at the first symptoms)

Prophylactic Medications (used daily to prevent episodes)

Supplements for Prophylaxis (used daily to prevent episodes)

Sedative/Supportive Medication (used during the episode to allow sleep)

Pain Medication

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8 thoughts on “Medicinal Treatment

  1. Sean says:

    I would say that WE should be thanking YOU Angie and showing our gratitude for having this site/blog where those of us or family members of ours can come and read up on what your experiences have been like and the myriad of treatments that have been shared by you and others. There is another message board that I believe is part of the C.V.S.A. where people who suffer from CVS can share their experiences. There are many people who post, mostly adults who have this rare condition or have a close family member that has CVS. I posted on there a couple of times. The board has a moderator who usually has some useful information regarding your posts and who also suggests that dosages of medications not be included as each person has a different metabolism and what I list as a dosage of medication may be vastly different than other people afflicted with CVS.

    As I had mentioned, I have Zofran ODT tablets, the ones that melt or disintegrate in your mouth at my bedside along with Ativan and the Imitrex cartridges. The Zofran tablets are 8 mg and either come in blister packs with a sweet taste to them or they come in a prescription bottle with a mint flavor. I asked the first G.I. doctor that I saw if there was a limit as to how many I should take. He told me to take much more than the prescribed dosage which is 1 tablet every 4-6 hours which is ludicrous if you are planning on stopping the nausea and the vomiting. When I awake to a cycle, I usually have about 20-30 minutes before I start vomiting. I usually take 2 Zofran with one Ativan and if that keeps the vomiting at bay, I take more Zofran, sometimes up to 8 ODT tablets with usually one more Ativan. Mind you that this is the same G.I. doctor who told me I was smoking too much marijuana so I’ve been leery about any of his advice but consulted other doctors of mine who agreed that someone my size needed much more anti-nausea medication than a cancer patient. If I can get all of that into my system prior to the vomiting, I can take and keep down the pain meds which then saves me from an E.R. visit which with the unusually long delays is counter therapeutic to breaking the cycle and the symptoms always seem to get worse the longer I am denied the proper treatment. Sometimes in the ambulance, an E.M.T. gives me a shot of intramuscular Zofran. This on top of the ODT tablets makes me very drowsy but by now, I am in a full blown cycle and have to take any other medications by I.V.

    Once again, this protocol works for me but may not work for others. Between you and your G.I., you should be able to tweak the dosages until you find an amount that works for you.

    I also use CBD oil, I’ve used the oil without THC and have found that the oil that contains THC is far more effective than the oil without.

    Another anti-nausea med that is usually effective is Promethazine suppositories. Not the most pleasant delivery method but it has worked on several occasions. I had a doctor in the E.R. tell me that he had handled hundreds of CVS patients which was a bold faced lie, even my G.I. only has had 2 other adult patients with CVS. He went on to ask me how I usually came out of an episode. I told him Zofran, Ativan and Dilaudid. He assured me that he could stop the cycle without the Dilaudid but I convinced him otherwise. I was given 1 mg and knew that if I didn’t get home in a timely manner, I wouldn’t be able to keep my meds down. He then told me that he was writing me a prescription for Promethazine suppository’s and when I got them to “Shove them as far as I could up my ass.” He disappeared and the nurse came in to discharge me. I started to walk out and the nurse told me to wait for the doctors prescription. I told her to please relay to the doctor that he could do with the prescription what he had told me to do with the suppository’s and I left.

    Just one of many ER visits where I was mistreated yet again. I have come across 2 people in the ER who knew what CVS was and how to break the cycle, mind you they were resident assistants who knew more than the ER doctor on duty.

    Unfortunately, I have had far more bad experiences in the ER than positive ones but that definitely seems to be the norm.

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  2. Hi. I wanted to thank you for your inspiring blog. I have been suffering from CVS since 2009, but just recently was diagnosed with CVS after my last episode 2 weeks ago. I have been having a episode once a year since 2009, but the doctors at the ER and my GI doctor kept telling me they didn’t know what was wrong. After my latest episode, I went to a different hospital and the doctor told me it was CVS. I feel a lot of relief knowing exactly what it is now. Your blog has been an inspiration to me!

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