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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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YUMMY healthful snack!!!!

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
My husband just got back from the grocery store. He always looks for good things for me since I have been going Gluten Free, trying to help the POTS.

He handed me a bag and said he found something new to try. It is called Bakery on Main Gourmet Naturals. Nutty Cranberry Maple granola. So many yummies in it! I am eating it now and will eat it with milk tomorrow.

It is Dairy free too in case someone can't have dairy. Just wanted to share this.
 

Resting

Senior Member
Messages
116
Hey Sallysbloom!

It's been a while. I hope you are doing well in this crazy-hot weather!

Do you find that the gluten-free diet helps the POTS? Or is it too soon to tell?

I think I will be trying intravenous saline, but was curious as to what else helps. I am also on florinef and drink Gatorade for the high salt content. (I remember that you can't take this) I do worry that my blood pressure could shoot up if I continue on this without the benefit of normal exercise.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
Yes, my blood pressure is not low, it gets high when I walk too much, just like my heart rate. No extra salt for me. Loads of water though. I have been reading a lot about high bp. and POTS. Seems less people have it, more have low bp. Feels the same, odd.

Anyway, I have been Gfree for about a month. It is going fine. I am sure it takes a long time to see if it helps and maybe you can't tell. Maybe POTS just won't get worse, who knows. Googling Gluten info always mentions nerves and inflammation etc. Nerves/nuerotransmitters and POTS go together. Just something I wanted to try. My Lipoic Acid helps nerves for sure, people use it for nerve problems all the time.

As for the hot weather, I just stay inside or if we go someplace, I am not out long at all. We went to my neices wedding last weekend. My son and my hubby RAN with me in the wheelchair!!!!!!!!!!! It is SOOOOOOOOOOO funny! They did't want me to get hot. I laughed so hard!

Heat is the worst thing for sure!

This granola is amazing. Gluten free or not, just GOOD.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
They are being adressed with my supplements, but POTS is just very tricky with heat. You have to be very careful. The temp. breathing, pulse, bpressure etc do not work correctly. I am on a schedule of supplements that help a lot, but you also have to stay cool and rest a lot.
 

Resting

Senior Member
Messages
116
Sallysblooms,

I am so sorry. I thought I had subscribed to this thread but apparently I didn't remember to. I was wondering what your results were all of this time and thought it odd that you hadn't replied (which is so unlike you) so I tried to find the thread but couldn't remember what it was called. All that to say, "It's the fog's fault" LOL! It's the duh days of summer working against me. :ashamed: I double checked and I am now certain that I have subscribed to this thread.

Anyway, great news that you are making progress with the POTS. I am taking the liquid Carnitine now which you suggested. It is so much better than the pill form. It is an expensive brand that I am using but I noticed a difference right away which I was not expecting. Did you have all of the calming, inhibitory neurotransmitters squared away before you addressing the excitatory ones? Every time I take one of the excitatory ones it causes my mind to race. CoQ10 also does that to me. I have tried Adrecor and it too causes my mind to race. I remember reading that you should address them in the right order. I am trying 5HTP again for the 4th time in about 4 years. I am just taking it with meals now and not at bedtime to see if that helps.

Does the alpha lipoic acid calm your mind? In other words is it something that you notice or is it just something that helps repair nerves in a way that you don't actually feel? That is next on my list to try.

You are so dedicated to helping yourself get better. I admire your tenacity. I don't think I could go G-free unless I had to or if I was 100% certain it would help significantly. They do have a lot of products on the market now that are gluten free which helps some. You have amazing willpower!
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
Resting, I have to start with the Gluten Free thing. I THOUGHT it would be awful and hard. It is SO easy. The only problem is finding GOOD BREAD, crackers, and pancake mix. I finally did.The other things like pasta are not hard. I can give you brands if you ever want them. I am shocked how easy it is. Now, I am NOT a Celiac patient. Some people get SO ill even in the same room with wheat flour etc. I have no digestion problems with it so if there is a bit in something from a plant that has wheat, it is ok for me. People that have to be SO careful have a harder time. Stores and online stores have a great variety.

Oh, there is a SIMPLE recipe for Peanut Butter cookies I found on AllRecipes.com. Just p.butter, egg, sugar and my hubby put a tsp of baking soda in. Fast and YUMMY. Delish.

Thank you for the compliment. Tenacity is the correct word, ha. I am working hare to heal! When I make my mind up, I get things done! ha. OK, TYPE A, typical CFS person. The POTS is what kicked my butt...

Yes, the Carnetine is expensive. I take Carniclear. Worth the price. Great for my brain fog. I have no fog anymore, great for mental clarity.

The Alpha Lipoic (I take Lipoic Acid Supreme) doesn't calm me. It heals my neuropathy with the POTS. Neuropathy is the main thing with POTS. Nerves need help to heal. The Autonomic Nervous system stops working correctly in POTS. It is one of the best antioxidents which is great for my nerves and POTS, works in the mitochondria for energy and many other things. My feet had neuropathy problems beginning and they are 99% gone! I was so scared at first. Part was the lack of circulation since I had to sit all day. I began to move them more and RUB them and my doc started me on Lipoic Acid Supreme. My doc and I think that is doing me a LOT of good!

5HTP was good for calming, Seratonin help. How much are you taking? I take SAMe too. I have REALLY seen a huge difference with these. Our Seratonin and other neurotransmitters really take a hit with illness and stress.

My docs tell me how much and what brands to take. I do give them ideas and we work together. Sure don't want too much or too little of anything.
 

Resting

Senior Member
Messages
116
Sallysbooms,

You are fortunate to have helpful doctors who understand this illness and know how to treat it with good brand supplements. I have had to do a lot of the research myself or have taken pointers from knowledgeable people like yourself. Although my doctor is good and uses some supplements he doesn't use that many. Also, he is 3/4 retired so I need to be able to take supplements in case I cannot find a good replacement.

I used to take SAMe but found I didn't help or hinder and since a good quality brand from Italy is expensive I stopped. I had taken it for a year or more. I am surprised you can take it since it can boost the blood pressure significantly. I'm glad it hasn't.

5HTP has driven me crazy trying to get it to work with my body. I started with 50 mg and have worked my way up to 200mg with meals. The cap (I follow a reliable doctor's direction from a book) is 300mg/day I know it is the precursor to serotonin which I do need but it has had a backward effect on me. So I am just going to take it with meals and not at bedtime.

Is the Adrecor still helping you?

I have a lot of nerve pain so I would like to take the A-L acid. I am hoping it doesn't cause my mind to race.

I heard that either Betty Crocker or Duncan Hines put out a gluten free brownie mix. If you are looking for something sweet.

Although those cookies sound good!
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
That is a lot of 5htp, at least for me. I take 100 in the morning, or sometimes now I take the capsule apart for less. I take 100 at night. I take less that 200 of the SAMe. My bp problems have gotten better with the treatment of my POTS. I read more and more that POTS has a lot of people with higher bp, not the low bp that most have.

The Adrecor is great for my POTS.

If you have nerve pain, do call your doc and see about Lipoic Acid Supreme. It is useful to people with nerve problems. Just start with a very small amount. I ALWAYS do that, I test things out. I then work up to the reg. dosing.

I get headaches with choc. sometimes, but the brownies sound good. The pbutter cookiesare good because it is all real and good. No butter, or junk, just the sugar.