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nik1980

Newly diagnosed - Seeking advise

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Hello everyone.  I have finally been diagnosed with Dysautonomia in September after years of being diagnosed with multiple random health issues (overactive bladder, IBS, Anxiety).  It was the most validating moment to hear that I am actually "sick" and not just living with a bunch of stuff caused by "anxiety".  However, now that the relief of having a diagnosis has subsided, I am feeling scared and overwhelmed.

I am coming to the realization that, for the rest of my life, I will have fatigue, stomach issues, bladder issues, dizziness and a bunch of other crappy symptoms that this disease causes.  How have all of you handled this?  Any words of advise?  I would especially love some thoughts on dealing with chronic nausea.  

Thank you all for your time.

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I am so sorry you are going through this. I have been dealing with dysautonomia for 9 years and went through the same uncertainty - and frustration - you are describing. I also have bladder and stomach issues in addition to many other symptoms from dysautonomia. The biggest advise I can give is that it does not stay the same for ever. Some days my stomach/bladder/heart issues are the most bothersome and other days it is the fatigue/brain fog/insomnia. Ove the years I have learned many ways to counter-act or deal with these issues. --- The nausea used to be unbearable, I could not even drink water without suffering from it. It came immediately after putting anything down and often came in waves. Today I am better controlled - I eat frequent small meals, drink ginger ale instead of plain water (I tolerate carbonated drinks much better than water), avoid trigger foods (spicy/acidic/fatty/heavy) and take several GI meds daily as well as Zofran as needed. For the fatigue, insomnia and dizziness I have noticed that mild but daily exercise are very helpful. I also take Ritalin for the brain fog and fatigue and it helps a lot. --- In the end the most important treatment for me is to live within my means - limit myself every day to what I am capable of that day. It makes life unpredictable but also tolerable. By that I mean that I can function daily without passing out or giving out. And my go-to last resort are IV fluids - I recently had a port put in and am now getting weekly home infusions with GREAT results. This - of course - is not realistic for everyone and most people can do without this drastic step. Just try to be positive, we may loose some abilities but we do not loose what matters the most. --- Tell your doc how you feel - many of your symptoms can be lessened with proper medication and lifestyle changes! 

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Thank you for your kind words, Pistol.  I am trying different meds right now and am feeling better in some ways but, as you know, every day is different! I have zofran and have found it effective.  I also use IB Guard peppermint pills.  IT IS PRICEY but it works.

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Nausea I use foods that are tart, like pickles and white grapes. I also will drink 6oz. of kefir once a day for a few days if my stomach and intestines are really bothering me. If you don't like kefir (tastes like liquid Greek yogurt, don't get plain) you can do culturelle. 

The best way to deal with dysautonomia is one day at a time. Experiment with what makes you feel better and what makes you feel worse. Also lots of water and don't be afraid of salt. 

Out of curiosity which dysautonomia were you diagnosed with?

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My mom is a patient of Dr. Grubb/Beverly so I went to see Beverly Karabin at University of Toledo Medical College (eight hours away from me) and she diagnosed Dysautonomia.   She believes that I have POTS but did not to run all the testing as I am on wait list for MAYO and that is essentially a "one stop shop".  

I have never heart of kefir.  Where do you buy it?

As to salt I am taking Saltstick Vitassim per Bev's recommendation.  They don't hurt my belly so that is a plus.

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You can get it in most stores. It is usually by the yogurt. I use lifeway brand and there are many flavors. It has a large amount of probiotic. So it is good to replenish your natural stores of good bacteria. I have seen it at Wal-Mart, Meijer's and Aldi's. 

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If you can get it prescribed I use Primperan / Metoclopramide which I use when the nausea is really bad and I cannot miss another meal (Weight issues, hunger is not something that bothers me), or I will be throwing up again. It's not a longterm solution but occasionally when truly awful it is a good standby.

 

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