Extreme Nausea

[plaxico6]

Hello everyone I am new to this forum.I have been sick for almost 2 years.What started as shingles turned to extreme nausea,then to gall bladder removal,then to gastroparesis,then to inner ear,then wound up being diagnosed with POTS on July3,2008.The nausea has really never left me except for a few days.

I eat when i can,which is usually only 1 meal every day or two that is usually thrown up with dry heaves afterwards for hours at a time.Throughout all of this none of the anti nausea meds worked.Reglan! Couldnt handle it uncontrolled shakes.

Domperidone!Helped for a month! Just on and on with meds just like all of you have.Hopefully though with a diagnosis,now we can treat it with a Beta blocker cause the TTT showed increase heart rate.If i dont get better by Monday as far as fluid intake i may wind up with a feeding tube. I have been hospitalized but 7 or 8 times for hydration.

My sister is a Nurse and gives me IV fluids at home. My mom takes care of my pic line that was removed a couple of weeks ago and now I may try the VAD. I am homebound and pretty much recliner bound because when I lay in the bed it makes me even sicker. I havent been out of the house in months other than on the deck or to Doctor Visits that aggervates my nausea due to the car ride and movement.We flew over 800 miles to Mayo for this diagnosis and the plane trip was horrible but I was ready for answers. Mayo said i should see some results with the Toprol within 1-2 weeks.

Do any of you take this? Do any of you have extreme constant nausea? At what time of day do you take the Toprol,what does,and does it make you sick taking it on an empty stomach? This is my first post and I am glad I found you all! Buffy

Edited July 14, 2008 by MightyMouse
fixed formatting

[ajw4790]

Hi!

Welcome! It sounds like you have been down a very long road. I hope that you find some more answers and relief soon! I hope the BB helps. I take Atenolol, another BB. I take it at night and for me it doesn't matter if on an empty stomach, for yourself because you are so sensitive you may want to try to have something in your system.

Also, I don't have the kind of nausea you describe, some others on here might have somewhat similar. Why do the drs. think you have it? To that severity does not sound like the nausea is caused purely by POTS. Do they think that the shingles caused nerve damage or something to cause the gastroparesis and nausea? Just curious.

I hope that things start to get better soon for you!

[Megan]

I took Toprol for headaches and it helped. I don't know how it works for nausea. Good luck with it.

Meg

[lloppyllama]

Sometimes for nausea I try carrots, they actually do help for me anyways...apparently it has something to do with something it closes off in your stomach.

I hope you find something that helps soon!

Mary

[Rachel]

Hello Buffy,

Welcome! I'm glad you found us. I hope you find the forum to be a warm, caring, and helpful place.

I'm sorry you're suffering so much from the nausea, gastroparesis, POTS, etc. My gastroparesis isn't as severe as yours, but I'll share what helps my nausea. I used to have a lot more nausea each day, but when I was diagnosed with gastroparesis I made some diet changes to low fat/low fiber that has helped. I'm sure you've already been through that. In addition to diet changes, I have found that a cup (or even just a few sips) of peppermint tea helps with nausea. I also take a ginger root capsule occasionally. It takes a little longer to work than peppermint tea does, but it does help. I don't know if any of those remedies will help you, but just in case I thought I'd share.

I haven't tried the meds you mentioned, so I can't be of help there.

I hope you can find something to help with the constant nausea. That's not a fun symptom.

Rachel

[Guest tearose]

Hello Buffy and welcome to the family!

Wish you didn't feel so poorly, keep trying to figure out what helps.

I don't have meds but I do have periodic bouts of gastroparesis. I get lots of nausea, especially in the morning. I worked with my gastroenterologist to use a diet of soft and liquid foods in frequent small doses. I also have several things that help me over some rougher bouts. I chomp on Gaviscon or drink weak tea or gently rub my tummy with warmth or cool compresses, I find that not eating is not good either. I do better to sip a high sodium, high protein broth and then I slowly come around. It may take a few days, but I am able to work through it for sure within a week. If you still feel badly after a few more strategies, please get in touch with the doctor again!

I am sorry you have to deal with POTS but I think you will find lots of good support from great people here!

best regards,

tearose

[juliegee]

Hi Buffy,

Welcome! Sorry you had to find us, but glad you did. My son has a similiar DX. We took him to Johns Hopkins to finally figure things out. He, also, was unable to eat due to severe nausea. I think your docs are on the right track by trying to treat the POTS. Once that is better controlled, chances are that your GI motility issues (gastroparesis & nausea) will also improve. Toprol may or may not work. You may have to consecutively try a variety of meds before you find on that does the trick. High sodium and fluid loading (IV or orally) is really important to improve your blood volume. Make sure you have good access to your POTS doc so you can tweak and try new meds as needed.

Reglan is an awful drug- crosses the blood/brain barrier. My son and most folks have intolerable side effects. Domperidone is a much better choice. Some patients have to take occasional break from it to get good results. If you've been off a while, try it again- you may be pleasantly surprised. Another choice, often ignored, is to take tiny pediatric doses of liquid (sweet, pink stuff) erythromycin 1/4 to 1/2 tsp 20 mins. before each meal. I know you can't eat now, but "E" made my son (and I) actually feel h-u-n-g-r-y, not nauseous, like nothing else. Make sure you are taking something for all of your GI symptoms: GERD & constipation if you are dealing with those. Protecting your esophagus and keeping the food moving all of the way through the GI tract is really important.

Make sure you are treating that nausea so you feel able to try to nibble. It's important to keep that GI tract moving, even a tiny bit. Zofran was a miracle for my son, helped and didn't make him sleepy. Phenergan was OK for nighttime. Low fat, low fiber, high salt. Stay away from dairy (aggravates the tum), stick with pureed foods, apple sauce, cchicken broth, white rice, vitamin water, gatorade, etc. You may temprarily need the feeding tube. That's OK. It'll help you keep your strength up while you deal with getting the POTS under control.

Please feel free to E-Mail me with any questions. My son ended up having to miss an entire school year to get better. It takes time, but you can heal. I also dealt with awful gastroparesis and POTS following my gallbladder surgery. I really feel for you and am sending lots of hugs and prayers your way.

Big hugs-

Julie

Edited July 14, 2008 by MightyMouse
removed quoted text

[momofsara]

Welcome to the forum Buffy--Here you will find caring friends to share your concerns and problems as well as good news with. Hope you find a solution to your continuing nausea. I know it can be a devastating problem. Take care and best wishes--Susan

[MightyMouse]

Hi there. I have constant nausea, and I really don't find much helps me. Sometimes, I take levisin sublingual, which helps a little bit, but also gives me dry mouth and makes me sleepy, so it's not okay for me to use this when I'm working or driving.

I used to take compazine as a suppository, but I developed a bad neurological reaction and haven't been able to take it for at least the past 10 years.

Good luck with finding some relief.

Nina

[Kitsakatsa]

Welcome, Nausea is my middle name and my husband's name (I'm married to nausea, so it seems).

This has been my first and foremost major battle. The things that have worked somewhat for me is compasine and intra-muscular shots of Zofran. The pills are not as effective as the shot. You can self administer it and I take 12mg up to 3 times per day. This at least gives me some relief. I would check on insurance coverage- some cover as a home-health benefit and it is covered without pharmacy co-pay.

Also, when I started taking Clonidine at night, it cleared up my AM nausea in a remarkable way.

I hope this helps!

Kits

[Bella127]

Hi,

Zofran is the only medicine that has helped me with extreme nausea. I don't take it all the time; only when it gets so bad that I can't do anything, even sleep. But it works wonders for me, and thankfully I don't get any side effects from it.

Also, for whatever reason, plain rice seems to settle down my nausea also - really, any carbs help me. But I know some people with POTS are very sensitive to carbs, so you do have to be careful.

The other thing I can think of is a little off the wall, but has also helped (comes in second place between all three of these) - pickles! I know what you're thinking: "ugh, pickles... just what I want to eat when I'm nauseous!" but if you try, maybe it will help you too. Usually it is the most immediate result for me, second to Zofran. If I get really nauseous, I will have maybe 2 or 3 baby pickles, and that's it! It usually calms down within a few minutes, and if I can have some pickles rather than a pill, why not?

I read somewhere that lying on your left side can also help with this, because it's related somehow to how the stomach/esophagus is positioned and calms down acid reflux. This seems to be comfortable for me when I'm nauseous also.

Hope this helps!

Chrissy

[Tammy]

Welcome Buffy,

Well it looks like you've received many welcome's and ideas on what may help with the nausea. I have tried Toprol and if the nausea is due to adrenaline issues, yes, it will help. BUT... here's a tip. If your doctor has started you on say 25 mg, you may want to start with a smaller dose. Most doctors don't realize how sensative we are to dose/amounts of medication. It took me 8 years to figure out that I need to start with 1/4 of a typical dose or I would end up ruling out a drug that may be helpful due to severe side-effect which sometimes had been due to how much I was starting on. I'm now on Atenolol which does help the irregular heart beats, fast hr, and adrenaline-like surges - which do cause nausea also. Ummm, what else...oh, I can relate to being recliner bound also. Periodically I attempt to get out but my max is about 20 minutes (including car ride time), so it's very limited. I have a 3 year old and I love her dearly but most days even trying to read a story to her is challenging, so we do 'free talking e-books' together on the notebook computer and that helps me feel like I'm somewhat able as a mother Hope you feel at home here on this support site... it is a great place to find understanding and compassion with POTS/Dysautonomia.

Take care and Bless you-

Tammy