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Caty

Getting better after a trip

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Hello dear all!

 We just came back to Oregon after a 3 week trip to Mexico. My husband and I are originally from there and went to visit family. This was my first trip after having been so sick and diagnosed with Dysautonomia and MCAS last year. 

Before we left I had improved with antihistamines and a tinny dose of Atenolol, but still GI sx remained together with brain fog, tiredness, sensory issues and a feeling of sadness or emotional ups and downs.

On our way there I was tired but made it ok. As the days went by, I felt better, the GI sx improved a lot to the extent that I forgot about them. I felt my strength  was back to normal and the brain fog gone.

When we returned I was so happy to realize how much I had improved with the trip and renewed my regular activities at home with my old energy and clarity of mind.

Exactly 9 days after being back, I woke up to the old GI symptoms. That day I felt how the Dysautonomia was back, not only GI sx but also the sensory issues, the fogginess and the tiredness were coming back...

Has anybody else experienced this? 

It seems difficult to rule out my home or the area where we live as main factors. They imply living somewhere else!

What would you do?

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Hi 

I also have MCAS & Dysautonomia (Dysautonomia much less of an issue now) and have had related GI issues. Wondered if you had a change of diet being in a different location that removed some food triggers for your MCAS? Also, I thought it might be useful to highlight a few things have made a positive difference to my GI symptoms:

1. I tested positive for Exocrine Pancratic Insufficiency and started on Creon (enzyme replacement therapy) and that made a huge positive difference. Apparently the over active mast cells can cause a problem with normal enzyme production. My GI improved, but also energy levels and overall well-being.

2. I use a H2 blocker - Ranitidine. This has also been really good, but not as dramatic as the Creon.

3. I kept a food diary and identified triggers for the MCAS. Turns out there was a lot foods causing me GI issues and when I cut them out I felt a lot better. I found it reasonably easy to identify the foods, as allergy-like symptoms were quick to come on - e.g. hives, itchy eyes, runny nose etc.

4. I take Xolair and this has reduced the mast cell problems and related symptoms significantly. Just about to up the dose on this to see if we can get further improvement.

Hope that helps. All the best.

 

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Thank you Macca for your thoughts and ideas. It is very strange. I cannot pinpoint a single food that would be the culprit since our diet is pretty much the same here and in Mexico. Actually in Mexico I did eat everything! and felt so well - no GERD symptoms... 

My feeling is that Mast cells are active again reacting more so to the local allergens. We live in an area very high in grass and tree allergens. I am already on H1 and H2 blockers which improved the severe onset of dysautonomia a year ago. 

During the trip to Mexico I kept the meds exactly the same but my overall well being improved to my before dysautonomia state...

Wish there were some of you out there that have felt better going to dyer, warmer places... have been reading that also altitude can make a difference with opposite results depending on the person.

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@Caty - there have been posts in the past and I remember some people improving temporarily going to a different elevation but what mostly was described was dry climate and change in barometric pressure. In my case GERD is a trigger effect from the dysautonomia and improves when the POTS improves and vice-versa. I have found that change in climate can definitelt affect our symptoms. With your MCAS I also could imagine the moist air and high pollen could continuously aggravate your immune system, therefore giving you symptoms. Maybe in Mexico none of that was present and therefore you were better? 

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Other environmental factors to consider are mold or pesticide/lawn treatments where you live. Mold can be hidden in walls, so air testing is helpful. Pesticides applied nearby can cause fogginess and GI symptoms as well.

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Has anyone experimented living some place else for a few weeks or months with the specific purpose of seeking improvement of symptoms? What about experiences actually moving?

I remember moving to our current area 10 years ago. The first year I was well, but the second spring the allergies began and increased through out the years. With our children it was something similar. They began developing allergies at age 3 or 4.

I wonder if we happened to move, the first year I would see improvement and be allergy free only to develop symptoms a year after the move...

What do you think?

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@Caty - because you metion MCAS on top of POTS and your children also having developed allergies, the fact that you improved when in a completely different climate - moving may be something to look into. I have a friend who had severe respiratory problems in the north-east, she moved to the south-west and is symptom-free. It does happen. I do know from my own personal experience that weather, barometric pressure, humidity etc all have an effect on my symptoms.  

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