Nausea

[micheller]

I've read nausea is a common symptom with pots. I think it's my worst symptom and has been my main complaint since this all started. Is there anything that helps??? I've already tried phenagren, zofran, domperidone, reglan. Nothing seems to help at all. It's gotten to the point I sit in the bathroom from about 3pm until I crash at 2am because it's so bad. It's tolerable when I don't eat or drink anything but that's not an option. I eat very small meals, if that's what you want to call them, bland foods, nothing after 7pm. I can deal with the pain and head stuff, I can't deal with nausea.

[anna]

Have you tried eating only food that has been in a blender, like you would do for baby food?!! When my son has bad bouts of GI problems, he finds he feels less sick if he only has pureed food!

[micheller]

Hi Anna. Yes I have. I've had the nissen surgery for reflux 3 times and the diet includes clear liquids, then liquids, purees, anything chewed to a mush, and normal. Sometimes I think liquid makes it worse because it just sloshes around.

[Christy_D]

Nausea is my son's main issue as well, and has kept him out of school for 3 years. He wakes up extremely nauseated and as the day goes on it lessens but never goes completely away. Nothing has worked for him at all. They determined his nausea was not GI related, but neurological. Once in the ER they gave him Ativan and it took the edge off but he was never prescribed it. He tried every over the counter med, plus a very long list of prescriptions.

Have they tried to determine if it if GI related or neurological? I understand nausea is a very hard symptom to pinpoint it origin. They thought my son was having silent migraines(he used to have the regular painful migraines) with all the side effects of a regular migraine, ie nausea.

Christy

[juliegee]

I think Christy is on the right track and I would strongly suspect that your nausea is due to slowed GI motility given your history with severe GERD. When the food experiences a "dam" somewhere in the GI tract, it ultimately backs up & GERD results.

Have you done any motility studies- like a gastric emptying study (GES) or antrodoudenal manometry? If not, that's probably your next step. Having been through all of that, I have some strange (but very useful ) advice. The GES is a very unreliable and unstandardized test. It simply offers a snapshot of what your tum is doing at that moment. My son's was normal even though he could only take one bite of his radioactive muffin due to extreme nausea/vomiting. The antroduodenal manometry is a much better test, BUT it is very invasive, expensive and only offered at a few teaching hospitals.

FWIW, I would find a local pragmatic GI who would just guide you in an empirical study of motility medication. For instance, try a 1/4 to 1/2 tsp of liquid Ery-Ped 15 mins before meals. It works by irritating the tum into emptying more quickly. If that helps; you have slowed GI motility. MUCH easier than all of that testing . My son uses it before each meal. I have also used it. It really turns that nausea into sweet hunger All of the anti-nausea stuff you are taking is slowing down your GI tract even more. It's OK to use that stuff, but only if you are also using something to improve your motility. (Domperidone is another option if Ery-Ped doesn't work.)

One other thought, your early GERD and GI motility issues are quite suggestive of Mast Cell Activation Disorder (MCAD.) have you ever looked into that? It also causes POTS, etc. here's a link to learn more: http://tmsforac.ipow...ev/archives/179

I am so sorry you are so dramatically impacted by nausea. That was my son's worst symptom as well. I've been intermittently impacted. I'm sure the nissen makes it worse as you can't even barf, right? How awful. Keeping you in my thoughts and prayers. I know better days are ahead.

Julie

[chipper]

Nausea is so awful. This was with me for 10 to 15 years. I could not move some of the time, because it made it worse. Klonopin started very slowly helped so much. Hope this helps! Hugs!

[micheller]

Julie, yes I've had the gastric emptying and manometry. The manometry was torture, I hope I never have to do that test again. Both came back normal but was put on domperidone anyway for nausea. It helps to a certain degree. I have to order it from Canada now, we have a local pharmacy that made it but it was closed. I will look into MCAD. I'm new to pots so all the causes is a little overwhelming. I'm not sure if I can vomit, I haven't needed to and prefer not to find out! I have a fear of vomiting, it makes it even worse to leave the house when I'm nauseous.

I see a GI at a teaching hospital. He's the one that diagnosed me with pots. I haven't been to a neurologist yet, I have an appt in Dec. How do they determine if it's neurological? I take lorazepam for anxiety but only at night since it makes me drowsy. It does help take the edge off, I can definitely tell when I haven't taken it! My primary prescribed it but doesn't want me to take it unless absolutely necessary since it's so addictive. I'll have to ask about Klonopin also!

Thanks for all of the great info!

[Christy_D]

They determined my son's was neurological by running several GI tests to rule that out. He has the gastric emptying test and had gastropareisis(retested this year and is fine now). He has had the antrodoudenal manometry (twice-he vomited the first time so the probes ended up in his stomach) and that was fine. He had endoscopy, colonoscopy, upper Gi, and the endoscopy where you swallow a pill sized camera and it takes pictures as it progresses through the entire system.

Since my family has a history of migraines, and my son previously had terrible migraines they went that route. Plus on one neurological exam, my sons eyes wobble when following the doctors finger. Every doctor in the room wanted to see it, I guess it was something out of the ordinary the way they all acted.

Good luck with all this,

Christy

[gertie]

Have you tried Ativan?

[juliegee]

Micheller-

Sorry you had to go through all of that testing, but it DID yield helpful info. The severity of the nausea you are experiencing is not completely explained by a GI motility problem. I know it was ruled out, but the fact that domperidone helps a bit makes me think there's still something to that...

The other thing that I would suggest would be to give the MCAD meds a whirl. My son's manometry showed that he DID have a nerve problem in his small bowel, helped with motility meds BUT he also takes the MCAD meds and they offer additional help. Christy's son is NOT officially DXed with MCAD (right, Christy?) but he finds relief with MCAD meds- like doxepin.

Many docs recommend a trial of an H-1 (like zyrtec, claritin, allegra: baby steps OR atarax, doxepin: big guns) and an H-2 (like zantac, ranitidine.) I KNOW you are already taking something for your GERD, probably a PPI, like Nexium. Many combine that WITH the ranitidine. They do the same thing, but work different ways. My son was always having breakthrough GERD issues with Nexium. When he added the ranitidine in the afternoon, it really helped. H-1's and H-2's are both antihistamines & something about the combo works magic IF degranulating mast cells are causing the GERD, nausea, POTS, etc. My first clues that I had MCAD were: severe GERD, IBS-D, interstitial cystitis, and migraines. I got a whole lot worse from that point until I was completely bedridden, but my med regimen really helps to stabilize me now.

Zyrtec & ranitidine are both very benign OTC meds. It'd be great to have a local doc be aware of your empirical trial of them. They way you respond to them is an important clue as to whether or not you have a mast cell disorder. If you find they help, you may want to explore the MCAD idea a bit further.

So sorry, you are dealing with all of this, honey. My heart breaks for you. Nausea was also my son's worst symptom. He was pitiful at age 12; had to drop out of school and he began wasting away to less than 100 lbs at 5'8". He couldn't even ride in a car. He's 6' 2" and 165 lbs now at 19 years old and well enough to be away at college. He's still sick- takes oodles of meds- but IS so much better than he was. There is hope. As Dr. Rowe, his ped at Hopkins says, "We've only just begun to fight." You'll figure this out and improve. A life stuck in the bathroom with nausea is NOT forever.

Big Hugs-

Julie

[micheller]

The current meds I'm taking are: Omeprazole 20mg x 2, zantac 175mg as needed, lorazepam (ativan) 1mg at night, zofran 8mg as needed, domperidone 20mg as needed, sodium chloride 1gm. I'm supposed to be taking Effexor 37.5mg for depression but haven't taken it for a while. This is interesting because I have tried every OTC and rx med for reflux with no improvement. In fact, I had some weird side effects from some. Nexium gave me edema and I started getting bad anxiety attacks after I started Aciphex. The others did nothing.

I do take Claritin in the summer for allergies but not daily. I do have migraines/headaches daily but don't take anything for them. I have IBS-C and take senekot when needed. It's the only thing that works probably because it's a stimulant lax.

I wonder if my GI can prescribe something for MCAD as a trial.

It's so nice to hear about your son! It gives me some kind of hope I won't be doomed with nausea forever.

[Christy_D]

Julie,

They did test Cody's typtese(sp?) and ruled out mastocytosis. Doxepin was helpful and when he reached the highest dose he could take, he had 7 weeks of very mild symptoms and was very functional. Then it stopped working.

Right now, Cody is at the Mayo clinic going through the Pain rehab center. They are teaching him to deal and cope and work through his symptoms. It is such an awesome program. He is only half way through the program and is is a completely different kid. He will be returning to school when he is done with the program. I will make a post to let everyone know about the program and how he is doing when he is done with it. We are very excited to see him living his life again.

Christy

[mwise]

I am taking Domperidone 20mg before meals & a bedtime along with Mestinon 60mg 3xday that seems to help me with the nausea & motility. I also take Omeprazole 40mg daily. Maybe try taking Domperidone and Zofran more around the clock instead. I found going to small meals of a low fat diet (Gastroparesis Diet) really helped with the nausea too. I was extremely nauseated, in pain, doubled over along with feeling full with fatty foods. I hope you find the right medication or treatment that will get this under control. There are alot of good suggestions here.

[juliegee]

Hey Michelle-

Your GI doesn't have to give you anything, but it'd be great to let him know about your trial. You are already on the ranitidine (zantac)- just take it religiously as opposed to as needed & same with the claritin. Just SEE if your symptoms improve a bit. If so,might be worth taking a look at some of the bigger guns.

Christy-

I missed your post about Cody. That makes me soooo happy- over the moon What a wonderful Mom you are to have found the program for him. I KNEW things would turn around. So happy his tryptase is low. Mastocytosis is very likely ruled out, but not MCAD. It's VERY telling that he's had symptom improvement with the doxepin as it's a very potent antihistamine. Has he ever tried atarax?

Hugs to all-

Julie

[micheller]

How many mgs of each do I take and when/how many times a day? I'm willing to try anything at this point. Oh and how long does it take to see improvement?

[micheller]

For the ones taking Domperidone, where do you get it from? I have to order mine from Canada since it's not locally compounded anymore and not FDA approved. It's getting very expensive to order it and it takes a few weeks. It wasn't covered under my insurance before but I just had to drive a few blocks to get a refill.

[sandymbme]

Micheller- Have you been tested for celiac disease? I was negative to standard testing, although that has since proven to be false negative. It turns out my IgA was too low to give a positive result to blood testing, and the fact that my endoscopy was negative turned out to be misleading as well. My gastro (that dx'ed the celiac) strongly suspected that celiac was responsible for my intractable nausea, and I had terrible diarrhea, that would only resolve into constipation. We opted for genetic testing, as it is not definitive for diagnosis, but can definitely rule OUT celiac. That was positive (smoking gun, at last! ) and a gluten free diet yielded swift, and stunning results. I went from constant, horrific nausea that responded to nothing (and I tried it all, phenergan, reglan, zofran, the works!) to sweet, sweet relief. It took time, about 4-6 weeks for all the gluten to clear out of my system and to see results, but the difference was striking. Now, the slightest cross contamination of gluten-containing foods or products can make me violently ill within 20 minutes. Suffice it to say, my home is completely gluten free, and we rarely eat out! Just make sure you consult with your GI BEFORE going gluten-free. If you are already on a gluten free diet, you will also have false negatives for testing purposes. And getting a firm diagnosis is very, very important. Celiac, as well as gluten intolerance (which is thought to be even more common, and has no reliable testing) is a very serious condition which can have life threatening consequences if untreated, and the only treatment available is a gluten free diet.

It is important to know, that with POTS, all by its lonesome, it is very, very common to have GI and digestive issues. Digestion is part of the autonomic nervous system functions, and so you will see that almost all of us report GI issues. Unfortunately, for many of us the answers to treatment are not clear. You may want to consider consulting with an osteopathic or fundamental medicine doctor. They are usually more open/knowledgeable about homeopathic and natural treatments, and some of us have had more success pursuing some of those types of remedies. I use several myself to supplement my nutrition and help treat my GI inflammation and irritation. My PCP is a big fan of incorporating those types of treatments into my treatment plan, and some of the supplements she has me on have been very helpful. Just make sure you consult with your doctor, just because it is "natural" doesn't mean it is inherently safe, or won't interact badly with your current medications. Good luck!

Sandy

[juliegee]

Hey Michelle-

You know I'm not a doctor, but I will share MY MCAD med regimen. I take 10 mg zyrtec and 300mg ranitidine in the AM (PLUS many other MCAD meds.) I stumbled across my regimen before I was even DXed.

If you want to run a trial to see if MCAD meds help, stay with whatever doses of the claritin & ranitidine that you were already taking and be religious about taking them every day. IF you see improvement, THAT's huge & you may want to see a doc about upping your dosages and maybe using some stronger antihistamines. Many of us take a strong antihistamine (H-1) at night. I use atarax 25mg and a tiny bit of phenergan- 1/4 to 1/2 of a 25mg tablet. For years before I was DXed I used benadryl at night.

I'm praying that you find relief-

Julie

[micheller]

I don't think I've been tested for Celiac's. I've had so many tests I'd have to call and ask. Lol I only have Zyrtec here right now. I'll try that with the Zantac. I'm really hoping this helps! Thanks for the advice!

[issie]

I had an allergy doctor tell me to NEVER take an H2 blocker without an H1 blocker because it could cause the H2's to convert down to the H1's and then the allergy will be even worse. So Zantac, Tagament etc (H2's) should always be taken with H1's Zyrtec, claritin, benadryl etc.. according to the Mayo doc.

For naseau, the best thing I've found and it works fast is homepathic by Hylands called Motion Sickness. You can keep taking it for the first hr. every 15 minutes and then every hr. thereafter until relief. Usually two to three doses is enough to get me past the worst of it. You are not to eat or drink at least 15 minutes before or after hemopathy for it to work and do not touch it with your fingers - pour it into the lid and put it under your tongue. Last night, I was having a bad spell of it and also took utica urens - which helps allergies. It worked real well for me. Let me know if you try it and how it does for you.

Issie