JWPotsMom Posted December 21, 2011 Report Posted December 21, 2011 This is a question for anyone who's had a positive experience with an IV of Compazine: have you found an oral med that helps?Oral Compazine didn't touch symptoms (neither did the mile-long list of other meds we've tried), the the IV would stop them completely for about 24 hours. Obviously you can't live on an IV in an ER. Quote
ramakentesh Posted December 21, 2011 Report Posted December 21, 2011 ive never heard of this med being used for POTS. It has a pretty nasty side effect profile but its a very interesting observation.Where did you receive this medication? Quote
MightyMouse Posted December 21, 2011 Report Posted December 21, 2011 that medication is also available as a suppository. I'm allergic to it, but it did work for my nausea when I used it. Quote
JWPotsMom Posted December 21, 2011 Author Report Posted December 21, 2011 Suppositories didn't work, either.It was administered in the ER several times, once along with Morphine (VERY bad idea), as a treatment for the migraine before POTS DX. Quote
juliegee Posted December 21, 2011 Report Posted December 21, 2011 I had an awful reaction to that once- think it was also given IV as I was hospitalized at the time. My arms and legs would not stop moving- i wanted to get out of my body- being in it was exhausting It is an anti-nausea med, right? What symptom was it helping for you? Quote
JWPotsMom Posted December 21, 2011 Author Report Posted December 21, 2011 Yes, the administration of IV Compazine was sometimes bad. But afterward he was better, much to my relief, though DS wasn't sure it was worth it. If they pushed it very slowly and waited to see if a second dose was needed, it went much better. It was the only thing that calmed the nightly nausea, acid reflux, chest pain, migraine, etc enough that he could sleep. But it only lasted 24 hrs. Quote
Trach Posted December 22, 2011 Report Posted December 22, 2011 Did they give you IV DHE for the migraine along with the compazin? Quote
Katybug Posted December 22, 2011 Report Posted December 22, 2011 The only thing that stops my nausea and vomiting when it starts up is Promethazine (Phenergan). It comes oral or suppository. I also have severe GERD when the GI issues flare up and the Promethazine handles that too. It also has antihistamine properties and doesn't make my migraines go away but does give a little relief from the head pain too. All the reflux meds had stopped working on the GERD when we switched to this option last year. I did take the Promethazine every night at bedtime (trying to not have to take it during daytime as it can make you drowsy) and that usually got me through my work day. I would start to feel icky in the late afternoon or evening. It took about 1 1/2 months of taking it daily to get everything settled down but after that I have only had nausea/vomiting flare ups maybe every three months and if I take the Promethazine for a few days, things settle back down. I do have flares of the abdominal cramping more often but I take a different med for that, Belladonna (Donotal). Doesn't sound like your son is dealing with that. Quote
ramakentesh Posted December 22, 2011 Report Posted December 22, 2011 I was prescribed DHE for POTS as apparently its also a selective alpha 1 agonist. It worked ok for me for a while but it didnt help with the cognitive deficits at all, it just stopped me from feeling like I was going to faint at any moment LOL. Quote
Christy_D Posted December 22, 2011 Report Posted December 22, 2011 My son had a 72 hour IV treatment of DHE last February. It is an old fashioned medicine they used for migraine(as explained by our neurologist). It helped a little, but I think it may have been the IV saline that was helping. So they had my son try DHE injectible 2 times a day for 30 days to see if it helped, and it did not. They were trying to get rid of my son's nausea, which they were thinking was a symptom of a silent migraine.I would really like them to try IV saline to see the effects on my son. Every time he has had an IV he perks up and symptoms become less severe. I think I'll ask about it during his next appt in January. Quote
JWPotsMom Posted December 22, 2011 Author Report Posted December 22, 2011 Not being critical, so please don't take this that way! I am wondering about the purpose of trying a saline IV since you can't use it as a regular treatment even if it did work--or can you? That is our problem, we have something that works, but he has to go to the ER to get it. Just to add what happened here, when my son had the IV morphine (with saline) he did not improve at all which leads me to think saline alone wouldn't have helped my son--though your situation could very well be different! It might work!No DS did not have DHE. I didn't think we had missed trying any medication ever made! : )We went down the 'silent migraine' and 'stomach migraine' path, too. Since his migraines had slight improvement with Topamax but the nausea was not affected they ruled those possibilities out.Phenergan didn't touch his nausea, nor several drug combinations including it. Quote
Katybug Posted December 22, 2011 Report Posted December 22, 2011 Has he been tested thoroughly for Celiac and gluten intolerance? My GI tested me and even though I tested negative was going to have me try gluten free anyway to see if it helped. He said some people don't test positive but become symptom free (I'm talking about GI symptoms cause that's what he was talking about) when they cut gluten out of their diet. Many discussions have been had on this forum about that. I ended up not doing it because we finally dx'ed POTS and the Phenergan worked. I know a couple of people that were extremely ill with GI issues, tested negative for Celiac, cut gluten, and are completely healthy now.I really hope he feels better soon. The GI issues are the worst! Quote
JWPotsMom Posted December 22, 2011 Author Report Posted December 22, 2011 Thank you for the suggestion! Yes he went gluten-free for three months with no change. Quote
Trach Posted December 22, 2011 Report Posted December 22, 2011 I don't know if each state has different regulations, but I understand in our state pediatricians can still administer IV's. If possible, would your pediatrician try a saline IV in his office and see if it worked? Or as an alternative, can you go to an infusion center instead of the ER? Our pediatrician has a separate room for IV's and has been very accommodating. I have a few friends whose children are homebound and home health delivers and administers the fluids at their house. I do not know what the qualifications were for home health, but I am sure your doctor may have some options. Although DHE is an old drug it is still used quite frequently to bust migraines. My younger daughter usually took up to 5 days in the hospital to bust her migraine using DHE , IV Toradol, and iv zofran, but my older daughter's headache would bust with only a few doses. I have a bottle of Tigan for nausea that my daughter tried but it did not work. I don't know anything about the drug, but it is an option. I could not live without phenergan. Zofran gives me migraines.I hope your son gets relief soon. Quote
icesktr189 Posted December 22, 2011 Report Posted December 22, 2011 my mom has a port fo her pots and does two bags of saline a day. her nurse comes once a week. I am in the process of trying to get a port also. Quote
icesktr189 Posted December 22, 2011 Report Posted December 22, 2011 oh my mom had been using hers for over a year now Quote
ramakentesh Posted December 22, 2011 Report Posted December 22, 2011 Nice wish I could organise one of those as well. id take the risk for relief any day when im this bad, Quote
goodnuff77 Posted December 23, 2011 Report Posted December 23, 2011 I was unable to tolerate most of the meds that most people see some help from. My Doctor and I both noticed from my many hospital visits that 1-2000 MLs of normal saline helped with some symptoms. So last December I had a Port a Cath placed in my chest. The only outside help I need is a needle change every 7 days. Other than that I hook up to my iv and administer it daily at my home. There are companies that ship all of my supplies right to my house. I also had severe GERD. That was helped with a Nissen Fundeplication about 6 months ago and for migraines I use immitrex and advil. Helps a little. Quote
Katybug Posted December 28, 2011 Report Posted December 28, 2011 JWPotsMom,I was looking up info on MCAD treatment and came across this list of drug classes to treat nausea in people with MCAD. I thought you might want it in case one of these might end up working for your son even if he doesn't have mast cell issues. I'll include the list and I'll also include the link to the entire website I was viewing.Nausea⇒ metoclopramide; dimenhydrinate; 5-HT3 receptor inhibitors; icatibant (from Table 5 in the link below)http://www.jhoonline.org/content/4/1/10 Quote
L4UR3N Posted December 28, 2011 Report Posted December 28, 2011 NS is the only thing that ever seemed to help me. Of course, there are several medicataions I have not tried. I still have this methyldopa pill bottle staring at me. I'm too chicken to take it. Dopamine is a serious thing to mess with (especially since my grandfather had parkinsons). It is interesting though that you found Compazine to help, and it is a dopamine antagonist....methyldopa has a simliar action. Quote
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