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amycooper

POTS Stomach, POTS Head, they make me want to stay in bed.

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This may seem a bit basic for this group, but I'm still new to all of this.

Any hints on how to manage the headaches and digestive issues that come with POTS?  Most articles/advice I find related to the dizziness/lightheadedness (which yes, I do also have) but little on how to manage the other two.

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Hi Amy,

On bad days I switch to an IBS friendly diet. I found a book called Recipes for IBS (ISBN13: 978-1-59233-230-4) by Ashley Koff, RD--it's a wonderful book on how to get your motility and bloat under control with the right eating habits, and it has good simple recipes. 

The headaches can come from multiple physical reasons and I think that sensory overload plays a big part in ramping up their effects. I frequently wear noise-cancelling headphones and large sunglasses when I am in stores or large atriums--both have glaring bright light. I try to make all my appointments and do my shopping during the slowest hours a business is open. I can get that information by typing the store name and address into google and it will open up a sidebar with data on the store, if you scroll down there is a bar graph showing the busiest and slowest hours. I do the same for restaurant reservations--Open Table can find you someplace nice that is also someplace quiet and you do not have to wait in a crowd before you sit down. 

My go-to electrolyte drink is milk. If you can't do dairy then soy or almond milk will also do because they are enriched with nutrients. Milk is rapidly digestible food that contains a dose of vitamins and minerals. If you are depleted on calories or nutrients milk can give you a healthy boost in a few minutes. 

You will get better! 

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I drink kefir and take Rolaids plus gas relief for digestive issues. Never plain kefir, that's gross. But the other flavors are good. It tastes like a liquid Greek yogurt. Just a small glass when needed. My mom hates the stuff so she just takes culturelle pills. 

The Rolaids plus gas relief works like tums for my bad heartburn but I think with the added magnesium it just helps my body. I use it sparingly though because I hate meds. 

Headaches are another story. Different people have different headaches so it depends on your body. Tylenol does nothing for me so I use excedrin migraine, aleve, or motrin. My son (who I suspect has POTS) has chronic headaches and 1 sometimes 2 motrin is enough for him to function. Cold dark room and sleep helps along with the medication. Luckily I don't have them a lot. 

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I have found that most people with dysautonomia have either one of the two: gastroparesis or what I call a hyperactive gut ( not a medical term ). I suffer from the second one. GERD, IBS, diarrhea, nausea. In my case I do have to take meds ( developed Barrett's esophagus and have strong family history of esophageal cancer ) but mostly benefit from dietary adjustments. Low acid diet, high fiber, high protein, very small amounts of raw veggies, 6 small meals a day ( that is a total game changer - believe me!! ), minimize milk intake ( not all dairy, just unprocessed milk ), and drink fluids rich in nutrients such as broth or Gatorade. --- I am sorry about your headaches, I do not have suggestions for them but hopefully other members do, since it is a common dysautonomia symptom. Get better really soon!

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I have just given up eating until the end of the day as eating really knocks me out, its easy for me as I also lost my hunger drive.

Come six pm, I have a light meal and then shortly lay in bed which feels so so good.

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@WinterSown thanks for sharing about milk working as a helpful electrolyte solution. I used to drink it all the time growing up but for some reason had stopped. When I started drinking 2-3 glasses a day again I started to notice a reduction in my fatigue and headaches that I wasn’t getting with the Nuun tablets. 

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On 11/1/2018 at 2:10 PM, Hippopotsamus said:

@WinterSown thanks for sharing about milk working as a helpful electrolyte solution. I used to drink it all the time growing up but for some reason had stopped. When I started drinking 2-3 glasses a day again I started to notice a reduction in my fatigue and headaches that I wasn’t getting with the Nuun tablets. 

thank you. milk is good food.

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I find I have nausea and digestive problems mostly in the beginning of the day. My appetite generally improves by the evening so I eat smaller amounts more frequently in the morning / afternoon and I can eat a bigger meal at dinner time (though not a huge meal). 

I always have mints and gum around to help nausea. I’ve experimented with licorice tablets to help heartburn symptoms (they help over time but aren’t fast-acting). Gaviscon (mint) tablets have helped for acute heartburn symptoms. I tend to avoid foods / beverages that make heartburn flare up. 

Smoothies and almond / soy milk have helped. In the beginning I relied on Ensure high protein vanilla drinks to help get extra nutrition when I couldn’t handle eating food. It isn’t the best but it isn’t the worst either. 

I used to suffer from migraines but since my POTS symptoms started I am having less headaches thankfully. When I do get them, I try Tylenol first. If that doesn’t do it then I’ll take Advil. Advil works the best but I find it can be hard on my stomach so I limit the use of it. 

I have a sensitivity to dairy but I sometimes will still eat Greek yoghurt and older cheeses for some quick protein sources. I find it depends on the day.

I’m struggling with gagging and dry heaving so I plan my foods around that. I’m not sure if the licorice tablets are making it worse or not so I’m trying to figure that out. I had cancer treatments to my neck/chest years ago so I may be having delayed issues from that (sometimes I cannot swallow food temporarily too).

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Were the majority of you guys diagnosed with these GI issues by a doctor or is it more something you just experience and treat yourself?

I’m just asking because I’ve been having awful GI symptoms throughout this year (newer for me) yet my cultures and ultrasounds keep coming back normal despite the constant abdominal pain, diarrhea, nausea, bloating, etc. It’s super frustrating and I’ve lost so much weight :(

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7 minutes ago, jklass44 said:

Were the majority of you guys diagnosed with these GI issues by a doctor or is it more something you just experience and treat yourself?

I’m just asking because I’ve been having awful GI symptoms throughout this year (newer for me) yet my cultures and ultrasounds keep coming back normal despite the constant abdominal pain, diarrhea, nausea, bloating, etc. It’s super frustrating and I’ve lost so much weight :(

All of my tests come back normal. So I treat mine on my own at this point. Since I started my keto diet (to help lose unwanted weight) I have found my GI issues have mostly resolved. It is a very nice unexpected thing to happen. 

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18 minutes ago, StayAtHomeMom said:

All of my tests come back normal. So I treat mine on my own at this point. Since I started my keto diet (to help lose unwanted weight) I have found my GI issues have mostly resolved. It is a very nice unexpected thing to happen. 

Good to know I’m not the only one. Did you ever investigate a possible food allergy or intolerance? I’ve been veggie/vegan for over 15 years so I guess it could possibly be soy or gluten related, but it’s only really flared this year so...

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9 hours ago, jklass44 said:

Good to know I’m not the only one. Did you ever investigate a possible food allergy or intolerance? I’ve been veggie/vegan for over 15 years so I guess it could possibly be soy or gluten related, but it’s only really flared this year so...

I had a full allergy test, scratch and injections, and the only thing that came up was 2 different types of fall molds. I don't think it is soy. Gluten could be a possibility but I don't think it is that either. I tried a low carb tortilla and if I remember right it was gluten free and it messed me up for a day. So I just avoid all the flour now. I want to try almond flour but it is too expensive and I have 2 teenage boys in my house :D

 

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10 hours ago, jklass44 said:

Were the majority of you guys diagnosed with these GI issues by a doctor or is it more something you just experience and treat yourself?

I’m just asking because I’ve been having awful GI symptoms throughout this year (newer for me) yet my cultures and ultrasounds keep coming back normal despite the constant abdominal pain, diarrhea, nausea, bloating, etc. It’s super frustrating and I’ve lost so much weight :(

So far I am undiagnosed with anything (likely POTS). I’m still waiting for a scope to be done. Initially my first symptom was intense nausea and fatigue. They treated me for a possible ulcer and initially they thought I had a stomach bug. I lost about 20 pounds in a month and a half due to lack of appetite and nausea. 

After they treated for ulcer my stomach started to slowly improve. I still get mild nausea from time to time (usually in the mornings). I avoid /limit foods that could cause heartbearn or stomach upset. I limit dairy as well. I was having trouble initially with diarrhea and some days I’d have constipation. Now I’m more regular but can still get looser bowel movements. 

All my GI symptoms started at the time my POTS symptoms started so I wonder if the ulcer is what triggered POTS in my case or if it was POTS all along. 

I still try to eat smaller portions more frequently to make digestion easier. I’ve gained about 5-7 pounds back now. I always have mints and gum around to help with nausea and my dizziness (gives a distraction). Licorice may or may not help the stomach lining. 

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GI problems aren’t always what you’re eating. It can be your nervous system triggering the nerves in your GI tract causing the spasms, urgency, etc

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My problems started August this year: first scary GI symptoms then POTS. Intense Gerd, esophageal spasms, dysphagia, intense nausea, and pots symptoms after trying to eat. 

I was diagnosed with MCAS and possible pots. After starting treatment for MCAS I saw an immediate improvement in the GI symptoms and they still continue to improve. Pots symptoms like fatigue, lightheadedness, have improved also.

My doc said that most people with GI symptoms at the beginning of the disease have MCAS.

 I am on Zyrtec, Zantac, Quercetin and a tiny dose of Atenolol and much improved!

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I am happy for you, @Caty. I have heard from others with POTS and MCAS that the treating of MCAS has greatly inproved the POTS. I wish for you that this is lasting!!!!

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