Help for nausea

[Richard1030]

I have finally had a brain MRI and echo cardiogram.  Although the MRI showed some damage from small strokes and a very small cyst on my pituitary gland the docs think they are not the cause of my symptoms, so they are back to autonmic dysfunction as a diagnosis.  I finally have a tilt table test scheduled for Tuesday and an appt. with an endocrinologist Dec. 30.  A cardiologist consult has been ordered and I am awaiting an appt.

My question right now is about the nausea I have had constantly since June.  At times it gets worse and I was wondering if anyone has suggestions on how to deal with it.  I used to relieve some of my symptoms by laying down for about an hour.  But it seems, lately, that my nausea gets so bad I am uncomfortable laying down and have to get up to a sitting position after a few minutes.

I hate to say it, but I have finally asked for and been given a walker with a seat from the VA.  Since I have not been getting out much I thought it was a good compromise and better than a wheelchair.  My symptoms all seem to be getting worse and some new ones have arrived.

[evo123]

I totally agree with you complaining about your treatment and the fact that they wouldn't carry out your tilt table test.  I would keep pushing for a tilt table test it may give you some answers.

When I first 'crashed' with this I was in hospital for 7 weeks and during this time al my tests were coming back 'normal', a locum doctor arranged a TTT for me and several days later when I was waiting to go for this my cardiologist stated that he doesn't know why I was having this and I could go home after the test had finished.  Needless to say, onc he seen the results I was not sent home from hospital!!  I am under both a cardiologist and 2 different Neurologists for this.  Although my heart is technically fine my condition effects it so my doctors feel it is wise to be monitored by both specialities.  

Follow the link below to go to one of our health pages here, it has several links that show dysautonomia specialists, you may find one that is close to you:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

Heiferley has given you some excellent info on nausea hopefully this will help you.

[Heiferly]

I am going to need to respond to your concerns in fits and spurts because I'm not in optimal health myself at the moment, and there's a LOT here to respond to because I'm jumping in here pretty late in the game.  (If you go to the main forum page you can see a post I just made today explaining who I am here and where I've been of late.)

I'll start with the nausea because it's an easy starting place and I can give a reasonably organized answer.  First, you should be aware that nausea in dysautonomia can have different causes and sometimes you may be dealing with more than one cause layered together.  There may be acid reflux (a gastroenterologist can test for this); there are many excellent medications available to treat acid reflux.  Proton pump inhibitors such as Prilosex (also available in generic as omeprazole) or Nexium and H2 antihistamines such as Tagamet or Pepcid (available OTC) are among the most popular treatments for GERD [gastroesophageal reflux disease].

Another cause of nausea in dysautonomia may be reduced GI motility, particularly delayed gastric emptying.  A gastric emptying study (generally performed through the nuclear medicine or radiology department of a hospital and ordered by a gastroenterologist) can identify whether this may be an issue.  If gastroparesis is identified, it may be treated with a medication to promote motility, such as Reglan.  For more information on tests of GI motility you can check out this site (the menu on the right side of the page under "motility testing" has the links to the tests for each region):  

http://www.aboutgimotility.org/site/about-gi-motility/motility-testing/

The third factor at play is, of course, the lightheadedness/dizziness that comes from blood pressure and positional fluctuations which can exacerbate nausea.  Some patients also experience postprandial (after meals) hypotension, which can also worsen nausea associated with GI issues around mealtimes.  


As for treatments, there are quite a few options.  On the "milder" end of things, ginger and mint are both calming to the stomach.  Traditional Medicinals brand makes both ginger and mint-based teas that are aimed to promote digestion and reduce nausea (I think they even have one called "Eaters Digest") ... you can view their selection online and even order their teas online if you can't find them in any local stores.

http://www.traditionalmedicinals.com/digestive_products

Over the counter, you can find products such as Nauzene (which is glucose, fructose, an antacid, and a bit of salt) or Cola Syrup (same deal, made up of sugars) at your pharmacy; some people find that these work well in conjunction with prescription nausea meds.  

"Classic" first generation H1 antihistamines (some available over the counter, some by Rx ... note that even OTC ones may be payed for by insurance if you get a Rx and fill through pharmacy so always ask!) are a bit of a bugaboo when it comes to dysautonomia folks.  Some people with dysautonomia seem to tolerate them without issue.  For others, they are absolutely contraindicated and cannot be taken because they will cause major upset to the ANS.  If in doubt, ask your dysautonomia doc first!  That being said, this class of drugs includes diphenhydramine/benadryl, promethazine/phenergan, and prochlorperazine/compazine which all have anti-nausea/vomiting properties.  Note that the newer second-generation H1 antihistamines such as Zyrtec and Claritin are more selective for the peripheral nervous system and so are not as potentially dangerous to people with dysautonomia (although as with everything, your mileage may vary so please defer to your doctors).  

Beyond that, you have the "big guns:"  anti-emetics usually reserved for post-surgical or patients with nausea/vomiting due to cancer treatments.  Despite this, it is *possible* to get insurance approval for this type of medication for dysautonomia-related nausea/vomiting, particularly if your docs decide classic H1 antihistamines are contraindicated in your case.  I'm mainly thinking of ondansetron/zofran here; there are other drugs in the same class as zofran but for whatever reason I just have yet to hear of them being used on any of us.  

(Note also I've already mentioned above there are medicines to treat GERD and gastroparesis separately.  There is also a treatment for gastroparesis called a gastric pacemaker, but we can go back down that road again if we get a post confirming that someone on the forum has gotten a positive diagnosis for gastroparesis.)

Let me know if you have any questions about this.  You can send me a direct message by hovering your mouse over my username (Heiferly) in blue at the top of this post and clicking on "Send Message" in the dropdown menu that appears.  Those messages are private; the ones that go through when you click "Leave a Note" are posted on people's user pages for anyone to see when they visit the page.  

Nice to meet you and a belated welcome to the community!
Heiferly.

[Richard1030]

Since the fiasco with the cancelled tilt table test on Tuesday, I got a call from my neurologist Wednesday evening.  Apparently the Atlanta VA has no treatment for autonomic dysfunction. nor does Emory Hospita;, who works with the VA Medical Center.  My neurologist is goig to apply for the VA to pay for me to see a private practitioner, but it will most likely have to be in the Metro-Atlanta, GA area. Mean while I'll just keep pushing on.

[LivingInHope]

I had a tilt table test conducted by an electrophysiologist, which is a type of cardiologist.  He diagnosed me with P.O.T.S. as a result of his findings of my tilt table test.   I had formerly been diagnosed with I.S.T..  

I can understand being disturbed by the cardiologist's decision at the point in time when he made it, and if there was a place to complain about that office, I would do it.  If they felt they already knew all there is to know, why did they agree to schedule the tilt table test to begin with?  Why did they not at least call you on Monday to tell you it was not necessary?  And why did they put you through the discomfort of coming in and having an IV needle stuck in your arm and waiting around for about an hour?  

The doctor should be held accountable, since it was his decision not to conduct the test.  If he had new information that told him it would be dangerous for your health as to why the last minute decision, that would be different, but it sounds to me like he already knew your symptoms!  I know they brought the tilt table down for me as soon as they knew I had passed out (post nitroglycerine) as was their protocol.

[Richard1030]

Well, I got to cardiology for my tilt table test and got hooked up to an IV and all the moniotors and waited for about an hour because the nurse who was going to administer the test got busy with another patient with a problem.  Finally the nurse came back in with the cardiologist and said they were not going to administer the test.  They already knew I had problems with my BP and heart rate and the test would not tell them anything they do not already know.  It is a neurologic problem, not cardiologic. Neurology should be handling it.  I told them they sent me for the tilt table test and my next appt. with them isn't until April, 2011.  I was quite upset, as was my wife,  We both complained very strongly that no one was doing anything about what was wrong.  There is no one doing anything to coordinate my tests and treatment and that includes my Primary Care, who just keeps sending me to the ER when my syptoms worsen.  The ER complained that I shouldn't be coming to them, because they are for emergencies.  I should see my PCP.  I keep repeating that I do and she is the one sending me to them right after she sees me.

We must have made an impression, because the cardiologist told us to wait in the waiting room and she would contact neurology.  She came back about 45 minutes later and told me neurology did not mean for me to wait until April and will be calling me soon.  The two docs (carsiology and neurology) discussed what to do and neither was sure.  They did prescribe steroids (prednisone) and told me I may have to be sent to a doctor or hospital, outside the VA (at VA expense) who could better deal with my dysfunction.  This was also the 3rd time the dreaded possibillity of Parkinson's Disease was mentioned.

So I am waiting for a call from neurology  and starting to think, very strongly, I need a new primary care provider.  But it was interesting to note that when I get really stressed, like I did yesterday, my symptoms get really bad.  I had a hard time just sitting on the test table, being told there would be no test and then almost fell down when I stood up.

I really hate this thing and what it is doing to me but I will keep trying to fight until I get some kind of answer.

[LivingInHope]

The endocrinologist may want to rule out Addison's disease as the cause of your symptoms...  low blood pressure, even fainting as well as nausea being some of the possible symptoms with this disease.  (See private message for more info)  Since you have a small cyst on your pituitary, they may want to want to test to see if your pituitary is making inadequate amounts of ACTH, which can be a cause of Addison's.  They may also want to check your aldosterone and cortisol levels.

But I find it interesting it seems you are saying lying down tends to increase your nausea lately which makes me wonder if you mightn't be suffering from acid reflux disease.  Have you ever had this evaluated by a GI specialist or an ear, nose and throat doctor who can look down your throat for evidence of acid reflux damage?

Also, while you are waiting for a consult with the cardiologist, since it has been demonstrated you have had what I assume are TIAs, what steps have they taken to try to prevent a full blown stroke from occurring?  Are you on aspirin or plavix?  Have they checked your cholesterol level?  

[evo123]

Hi,

Sounds like you have had quite a few tests done to look for other causes already.  I didn't realise a definate diagnosis had been made for you.

I am sorry to hear you are going through this and hope you are given the help you need.

I am not knowledgeable on pituitary issues but I would ensure that all your hormone levels relating to this and your adrenal gland are checked out (I am sure your endocrinologist will do so) as conditions relating to these hormones can be diffrerential dx, and sometimes cysts or growths on these important glands can disrupt continously or episodically essential hormones.  Have your cortisol levels been checked?

I have a growth on my adrenal gland and 18mths into finding this, it still has not been totally ruled out as a cause for my POTS.  I am, again, awaiting further tests on this.

x

[Richard1030]

I have an endocrinology consult scheduled for Dec. 30.  I have had a brain CT and MRI, a radioactive stress test and an echocardiogram, Lord knows how many blood and urine tests and I am waiting for cardiology to call to schedule a consult which has been requested and approved.

When I was admitted to the hospital for 3 nights in October, they did all kinds of blood tests, gave me IV fluids each day and could not stop the orthostatic hypotension at all.  They, finally, said they could find nothing and said I probably had "some kind of autonomic dysfunction."  Neurology, this week, finally made an actual diagnosis for that.

Thanks

[evo123]

Hi x

Have you had endocrine testing done yet?  Your doctor can not rule this out until testing shows no abnormailities.  

A Tilt Table test may give you answers, please let us know how it goes, but it is important to ensure that your doctors have ruled out all other possible conditions before a definate dx of autonomic dysfunction is made.

I am not familiar with your story x what testing have you had done so far?

I suffer from nausea, I find the only thing that helps me is Cyclizine. No natural methods help me.  Maybe others here may have some suggestions that have helped them.

x

[mtgardner]

I also have a history of several small strokes that were discovered on MRI.  I too have hypotension but also high BP.  I take verapamil to keep the high BP lower and drink water to raise low BP when needed.  A pint of water can raise it 40 points in 30 minutes.  It is high and low during the day.  I can also have bigger drops the longer I stand.  Have you tried the thigh high stockings that can help keep your pressure up?  They work for some.  I think  for those of us with mixed high and low pressure it can be hard to find the right balance.  Mine is better in the morning unlike most others, so I tend to do more then and am pretty much less active in the afternoons. I do find having my feet elevated is very helpful and I have foot stools everywhere.  Generally I don't think it good to have my feet down for long.  I have a recumbant exercise bike to use for exercise.  

Your question was actually about nausea.    Many people with autonomic dysfunction have GI problems and or nausea.  I have  found an NIH article about nausea and a possible solution.
http://www.ncbi.nlm.nih.gov/pubmed/1675849

As for the small strokes.  I noted last fall I was having more trouble with multi-processing and thought it was from natural aging but now I wonder if that is when I had the strokes.
You may not have any residual problems and I know the initial neurology exam did not show any deficit for me.  But then it also did not pick up on my extensive neuropathy.
I have had some aspiration (coughing with meals and reflux)  and the speech pathologist found on testing weak tongue movements that contributed to my problem which he attributed to the strokes.

I am having problems with fatigue and now in my arms as well and am having difficulty with tasks like shopping.  I think the real challenge is to find ways around our deficits as they arise.  I have thought too of getting a chair like you described.  I need a way to rest when out and about and also a way to carry shopping bags.  

Again, welcome to our forum and please let us know how the tilt test goes.  Marie