Need Help With This Nausea

[rubytuesday]

I have had waves of nausea off an on that I am assuming is from the dysautonomia. I have gastritis and GERD and take Rx's for those but sometimes these wave of nausea get pretty bad. I am trying to finish up physical therapy aquaciser--4 more session. When I left on Tues., I thought I was going to toss my cookies in parking lot when leaving. Well, today the cramping was so be while in treadmil but again was off and on and I kept drinking water. When session was over and I started to shower, had to run out of shower and hug the toilet, puking and wretching (no good for the low BP I already have). Since I had that cramping and nausea so bad on Tuesday, and my BP was only 92/64 before therapy, I took extra 15 mg Mestinon before therapy this time (thinking maybe things wouldn't be so bad, but they were worse). I didn't want to pull the call light--could not have got to locked door and wasn't even dressed. I managed to get semi dry enough to get of of bathroom and lie down on one of their empty beds. Therapist came running over--HR was 115 (that was few minutes after I'd been laying and with my OI, my HR has been around 60s when BP drops now). BP systolic was 82 and she never could hear the diastolic on different attempts.

I was started on Midodrine in Sept. (but had nausea before that--not so severe). In Oct. Mestinon was added (had been on higher dose of that in past without effects). Later in Oct. the Midodrine was doubled. Could this worsening nausea be the affects of the vasoconstriction in the stomach? Do these meds cause nausea worse? Should I have eaten something with the Mestinon (heart doc said didn't need to)? Can anybody offer insight/share experience? I imagine in down to around 93 lbs. I try to eat small frequent meals when in between the nausea.

[Brye]

Zofran helps me. Nausea relief without making me sleepy.

Brye

[rubytuesday]

Zofran helps me. Nausea relief without making me sleepy.

Brye

Thank you, Brye.

I have a call into the PCP for tomorrow and will ask about that. Does it help with the bad stomach cramps, too? I am really thinking after reading literature on drug insert it is the Mestinon that's making things worse.

[mwise]

Hi RubyTuesday,

I take both Mestinon and Midodrine too. I take Mestinon 60mg 3xday with food. I do know that Mestinon can cause cramping, diarrhea & nausea initially, but the symptoms/side effects do subside. I was fortunate not to have side effects with taking it. I am on Midodrine 7.5mg 3xday & as Needed-never had any nausea with it. I have Gastroparesis and take Domperidone 20mg 3xday before meals & also at bedtime. I also take Prilosec 40mg daily. I agree with Byre to get you something for nausea.

[rubytuesday]

Hi RubyTuesday,

I take both Mestinon and Midodrine too. I take Mestinon 60mg 3xday with food. I do know that Mestinon can cause cramping, diarrhea & nausea initially, but the symptoms/side effects do subside. I was fortunate not to have side effects with taking it. I am on Midodrine 7.5mg 3xday & as Needed-never had any nausea with it. I have Gastroparesis and take Domperidone 20mg 3xday before meals & also at bedtime. I also take Prilosec 40mg daily. I agree with Byre to get you something for nausea.

Thank you, mwise.

I am on such a baby dose compared to you and have since the Midodrine was doubled 3rd week of Oct to 5 mg breakfast, noon and supper and Mestinon 15 mg morning and noon (and if needed for sx), and I'm still running low/low-normal BP when goal is hypertension, I have to get something to get me through this before another dosing adjustment. I was told you didn't have to eat with the Mestinon but it looks like I need to not only carry it with a bottle of water (for the prn use) along with a candy bar or something non-salty. I suspect gastroparesis from the dysautonomia and the EDS. I've been on long time treatment with Prilosec OTC and Zantac at bedtime (they couldn't increase dose due to taking Lipitor and being on potent med hard on liver).

I can't imagine how much uglier it's going to get. I sure hope this will do the trick. I'm trying to get through 4 more phys therapy aquaciser. And I suspicion that it won't hurt to have something on-hand if/when doses are adjusted. I'm trying to stay positive and told my therapist as I left not to set me back.

[mwise]

Good morning,

I don't know what type of diet you are following, but maybe a change in foods will also help. Because of the Gastroparesis, I eat a low/fat free diet and low fiber diet d/t diverticulitis. I also drink yogurt smoothies in-between for calories. I do small frequent meals. Alot of members here avoid gluten, wheat and dairy products. Some do a Paleo Diet and supplements too. I do know when I eat too much carbs, it affects my energy level. I will share that when I was first diagnosed, I was barely eating almost nothing. I was actually begging for a feeding tube. I would take one bite of any type of food and I would double over in severe pain and oh the weakness. It was finding the right diet, medications and treatments that I have slowly come back to life again. I initially had started on Mestinon 30mg 3xday which was increased to 60mg 3xday along with going from Midodrine 2.5mg 3xday to me being on 7.5mg 3xday & as needed. I have found it has been trial and error with medications, diet and treatments. I hope you get relief soon.

[rubytuesday]

Good morning,

I don't know what type of diet you are following, but maybe a change in foods will also help. Because of the Gastroparesis, I eat a low/fat free diet and low fiber diet d/t diverticulitis. I also drink yogurt smoothies in-between for calories. I do small frequent meals. Alot of members here avoid gluten, wheat and dairy products. Some do a Paleo Diet and supplements too. I do know when I eat too much carbs, it affects my energy level. I will share that when I was first diagnosed, I was barely eating almost nothing. I was actually begging for a feeding tube. I would take one bite of any type of food and I would double over in severe pain and oh the weakness. It was finding the right diet, medications and treatments that I have slowly come back to life again. I initially had started on Mestinon 30mg 3xday which was increased to 60mg 3xday along with going from Midodrine 2.5mg 3xday to me being on 7.5mg 3xday & as needed. I have found it has been trial and error with medications, diet and treatments. I hope you get relief soon.

mwise,

Thank you for the info. I too hae to watch my fats not only b/c of high cholesterol/triglycerides but always makes GERD worse. I have lactose intolerance but was making smoothies using yogurt/bananas/frozen strawberries/ice cubes this summer but I was able to stand at the blender to pluse the ice/berrier when I could stand longer. I have to have fiber with the IBS plus Miralax (which I'm finding is puzzling too as sometimes this Mestinon works in evacuation without softening). When I do feel hungry, I want/do eat but find myself full very quickly and when not 'really' hungry ask for kid's portions when eating out (as they are less than the senior portions), unless I just plan on taking the rest home to eat as another meal (which is never as good reheated). When you get sick at your stomach once you throw up, then it turns you away from eating that food again. I can't have salt. Do you think it would be better for me to carry with me (if I have to use the Mestinon when out) something light like 3 Musketeers bar or something like a peppermint patty or something like dry cereal? I can't see how I can get in 6 small meals. I've never been a night snacker and so many of my meds have to be taken either with food or on empty stomach (3 of those with 2 on different schedules as taking every 12 hours). So if I eat, I have to wait at least 2 hours (maybe more with delayed emptying of the stomach) for my stomach to be empty to take those pills, and then would have to wait another hour before I could eat. My morning meds (with food are around 7ish), my next 'empty stomach pill' is around 9-ish, my next round of pills are noon-ish with food, my next empty stomach pill is 3-ish, my next round of meds are 5-6-ish and the last round are on empty stomach around 9:30-ish. So I eat small when taking morning meds but if I eat aroud 10-10:30 I won't be hungry to eat again at noon. Then have to keep stomach empty to take the 3 p.m and keep empty for another hour (when DH gets home around 5-ish for dinner). It seems if I eat at night with the gastritis and GERD, I don't sleep well, and I have to have the stomach empty for night meds so if I eat supper 5:30-6, and it might take 3 hours to empty, then it's about time for my night meds that have to be on empty stomach. I may eat banana or some fruit or cereal as my inbetween meals but it's really more like a little snack. I used to grab pack of crackers but no can do with the salt restrictions yet. Used to eat the pretzel rods, but with the reverse on salt, cannot do that either.

I did have pill cam and at first GI thought I had Celiac disease but then since the cam was defective, he repeated it and said that I didn't. I have this EDS so I imagine everything is pretty loose and boggy down there.

I truly welcome ideas and suggestions. I'' have to look up this Paleo diet as I am not familiar with it. Thank you, again.

[rubytuesday]

My PCP called me this morn (internal med) and won't add Zofran--wanting me to call Dr. G in Toledo. Nurse was quick to call me back to gather info to message to doctor. She told me it's the Mestinon and he'll probably have me stop it. I told her that his goal was to get me hypertensive and I'm still low. She told me that 'we're not always able to fix that. . .some people will just always stay low'. Now this is confusing as he distinctly told me he wanted me hypertensive and that it may take many trials of different things to find right match for me. I just told her that in any event, if he wants to keep me on this Mestinon to please try me on some Zofran.

[mwise]

Hi RubyTuesday,

I am sorry to hear that they would stop the Mestinon. I don't know why they don't want to try Zofran or something similar. I get Domperidone from Canada that has helped with motility and nausea. I take Domperidone 20mg before meals & at bedtime. It has really helped with the digestion of foods. I used to have food either stay in my stomach or take over 2-3 hours to digest it. I would be miserable. I would definitely try the candy bars. Anything that you like to help you with calories. I eat alot of low fat/fat free items such as ice cream, yogurt & cottage cheese. There are also unsalted crackers and pretzels. I saw them at a Super Walmart. Try sitting when you make your smoothies. I sit to cook on my Rollator. I do alot of things sitting. Gotta run. I will share more later.

[Katybug]

HI rubytuesday,

I have/had what I thought were/diagnosed as GERD and gastritis. (Now I think that it is all really part of the dysautonomia and not classic GERD/gastritis...the GI just didn't know what else to dx my with cause it was prior to my POTS dx. ) I had been on all the OTC meds and they had stopped working, then I went ot Nexium which eventually stopped working. I would also go through periods of severe nausea, projectile vomiting, abdominal cramping and diarrhea. When I finally had an episode when I couldn't eat solid food for a month and a half, the docs gave me promethazine (phenergan) for the vomiting and belladonna for the cramping and diarrhea. I had to be careful to space these drugs out during the day so as not to create other issues but they got my GI issues under control and I was able to get off the Nexium type druga completely. I still have occassional bouts with the GI issues, but, it is no longer constant and I have scripts for the promethazine and belladonna to take as needed. When I have the flare ups it almost seems like I need to tkae these meds to get my GI tract to "reset" back to normal. It's almost like I have adrenaline surges in my GI tract that have to be shut off...I know that's probably not medically accurate...it's just what it feels like.

I really feel for you as many of my worst days are during my GI flares. It's awful.

Feel better,

Katie

[rubytuesday]

Katybug,

I do have Phenergan suppos. that I use (only if I have to) with migraines. I also have Bentyl for abd. cramping. Both make me drowsy. I never thought of trying this to settle things down. Dr. G (cardiac specialist's) nurse who told me to quit taking the extra ('as needed') Mestinon, but still take a.m. and noon dose and she'd get message to doctor to see what he wants me to do. That was this morn. It's Friday night, weekend here, no call back so perhaps they would rather I have the '4th leading cause of death secondary to falls from syncope' than the weight/fluid loss/gut wrenching pain and misery, or maybe he hasn't got to message yet. I had just asked for Zofran but nurse commented 'I see you're already on so many meds and pain pills'. I explained to her that I list all my 'as needed meds' seperately but that it is rare that I take 1 pain pill (while I per doctor I can take 1-2 every 4-6 hours as needed). I explained for me the pain pill only takes edge off and not worth effects on the IBS. The other 'so many meds' I am on are Fish Oil, Calcium and Vitamin D (osteopenia), Folic Acid, Mg, Mestinon and Midodrine (orthostatic hypotension), Bumex and Potassium (blood pooling with the autonomic nervous system failing), Lipitor (high cholesterol), Singulair (asthma/allergies), a rescue inhaler (rarely used), an eye vitamin, 3 different eye meds for dry eye, and an antibiotic and antifungal that I must stay on for life (for osteomyelitis), plus Prilosec OTC and Zantac. (Meds listed 'as needed' that I put frequency on his form include Imitrex for migraine, Bentyl for GI cramping/spasms, phenergan suppos for nausea *** the migraine, vicodin that I probably haven't taken since back strain this summer). I have fibro and chronic myofascial pain and EDS--I'd tried Lyrica, Cymbalta and a list as long as my arm of meds to help reduce pain that either made me too drowsy or feeling detached or I had allergies/sensitivities like urinary retention with. I take no anti-anxiety meds. I take no anti-depressants, but I really got the feel when she made that comment that I was drug seeking. She may have not realized how condescending her comment sounded so I can only hope that he just didn't get through all his messages yet (especially when he told me goal was to get me hypertensive and that there may be lot of trials with different meds, but she told me 'you know we just can't always get peoples' blood pressures up--you're functioning aren't you?'. How confusing is that when I'd called to inform that I was hugging the toilet, wretching and puking and ask if it could it be the Mestinon, and since I'm still hypotensive, would it be possible to have Zofran called to pharmacy or possible change made. DH's family's t-giving dinner tomorrow that I'll not be partaking in (probably just as well with a lot of sodium in those comfort foods that I cannot have) and told DSIL that I may have to excuse myself to lie down. This is a totally new experience for me, who was always in the kitchen helping. I still can't stand long--can't get too close to heat (she has double ovens and recessed stovetop and huge family so will be plenty warm in kitchen). Am feeling not only miserable with this but overwhelmed and not pulling my share of the work for once--plus we will be taking 2 g-kids with us (and I can't be 'out' with the phenergan with them). I was thinking about holding the Mestinon altogether tomorrow hoping at least to get through this.

Thanks for your suggestion and shoulder to lean on, Katie.

ruby

[fiona-jane]

hiya,

i take domperidone to help me eat and this is quite a good anti-nausea med. my nausea is awful without it, so bad i retch over and over and cant make it stop. so i make sure i take all my dom!

i also get tummy cramps (and cramps in my oesophagus and intestine) and was prescribed buscopan for them as it specifically works on the muscle inside the tum etc. been on it a few months now and has made a big dfference to my quality of life, no longer have quite as much pain in my tum and also seems to work on my lungs too- asthma symptoms ease up when i take a buscopan tablet. which is fab!

fi xx

[rubytuesday]

Do you hae to have a Rx for this droperidone, as it seems my doc and cardiologist do not see necessity of prescribing an antiemetic? Is it something I can get OTC? Thanks for responding.

Edited November 19, 2011 by thankful
Removed Quote - please use "Post" box at bottom of page

[janiedelite]

You do have to get a prescription for domperidone. I don't know how easy it is to get now, but 2 years ago I had to get mine at a compounding pharmacy.

[mwise]

As far as I know, you can't get Domperidone in the US anymore. The FDA took it off the market. My GI doctors at Cleveland Clinic send/fax a prescription to Clayman's Pharmacy in Canada for the Domperidone. It is costing me $180 out of pocket for a months supply. Being able to eat and not nauseated out weighs the cost.

[Lenna]

You can get Domperidone at compounding pharmacies in the U.S. if you have a prescription. My son gets his at a place called America's Compounding Center in Newton, MA. They will ship it to you if you are not local. He takes 10 mg.3x/day and a month's supply costs $60. I think it would be the same cost for 20 mg. They base it on how many pills they're dispensing. Hope this helps.

[mwise]

Lenna,

I am going to look into this as what a cost savings this would be for me. Thank you.

[Katybug]

ruby,

Until you got the docs to give you something else, you may at least try taking the phenergan at bedtime...that's what I do when I can't afford the drowsiness that comes with it...it usually holds me over until late afternoon or evening the next day. Its worth a shot if you are still vomiting.

Hope you feel better,

Katie