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Your Experiences With These Things


Lenna
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Hi,

My son is a teenager who has recently been diagnosed with POTS. I'm trying hard to identify what things will help or hurt, and your experiences are so valuable to me.

Have any of you tried Chinese Herbs to help with your symptoms? What did you take, and was it helpful?

Does caffeine help or hurt?

Are your symptoms triggered by Chinese Food/MSG? Thanks!

-Lenna

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If you haven't gone to the main DINET site and read through the info there, you probably would do well to do that. Also, I have placed links to good sources of information in the frequently asked questions section here on the forum.

Nina

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Be sure to read these:

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

Myths

http://www.dinet.org/myths.htm

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It's all very, very individual.

Caffeine is one example. It doesn't seem to bother me (if anything, it helps me feel more awake), but it really bothers some people. You might just have to encourage your son (with his doctor's permission, always) to try different things and keep track of what seems to help him and what hurts.

Good luck to your son! If he ever wants to chat with someone here, tell him he's more than welcome!

Amy

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Thanks for your replies and links. I actually have read through it all (about 100 times over the last few weeks) and have spoken to my son's doctor about each of these questions, but I do agree that it's very individual (and the doctor agrees with that as well), so I'm interested in hearing about individual experiences, particularly about the Chinese Herbs. Thanks.

-Lenna

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I'm a little leery of the herbal route myself, given that they're not regulated in any way and we all know about the bad stuff coming in from China. Whether it's killer toothpaste, toys coated with lead, dog food full of plastic, etc.

Just my opinion, however..

Amy

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I tried accupuncture, which didn't help my autonomic issues, and made my bp a bit lower, probably because I found it relaxing.

Also, as for herbs, the accupuncture practice I used also had an herbalist on staff, with a doctorate in Chinese medicine. I tried a number of different combinations of various herbs she suggested, but none helped.

I've gotten better help from a few things:

compression stockings

sleep

exercise under supervision

one cup of coffee in the morning

plenty of salt in my diet

medications, which for me, have changed over the years

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I find coffee beneficial. It helps to wake me up, but doesn't raise my heart rate.

I've never tried Chinese herbs.

Chinese food is somewhat of a trigger, but no more than most foods. Food in general is just tough on me.

I hope your son can find what is helpful for him.

Rachel

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When I was in school I found that skipping lunch helped me keep alert and made sitting in a chair for long hours less unbearable. Of course, there was a trade-off because I felt hungry, but to me hunger was better than orthostatic discomfort. (I feel the same way about the cold; I don't enjoy the cold any more than hunger, but it invariably relieves my symptoms.)

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Hi!

As far as what works and doesn't... I think they have covered a lot of it... it is very individual (a lot of hit and miss), there is also some of the established hints out there on what to try and avoid.

Some find diet real important (ie. low carb /high protein). Some eliminate things like gluten or dairy. As a rule try to stay away from sugar as much as possible (I am not good at always! :( ).

As far as chinese food I have seen somewhere that chinese food can be one of the worst kinds of foods for us b/c of the carbs and possible MSG. MSG could be a trigger for some, esp. if you have migraines. Also, there is a ton of salt which is good, but I am not as sure about the intense rush of salt on us, and if that is the best. But, I think the worst thing about it is the carbs, along with lack of fiber and protein.

I myself am not very familiar on the chinese herbs, although to be honest I am wary. Actually, I hesitate with any supplements, because it is something else for your body to react to. If you are looking to try some I would say it is important to consult a physician, maybe you can find one that is familiar with them and assist you. Also, make sure to read up on them. Check out what their mechanism of action is and side effects, because many of them maybe contraindicated for use with any meds you may be on or for those with hypotension. You may not want one that lowers blood pressure or increases a nervous system that may already be on high alert. I recently I believe on a previous post was warned on the use of ginseng and gingko biloba, and have chosen to not take that anymore.

What are you thinking when you say chinese herbs?

I hope this helps you somewhat!!! :)

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My son was recently diagnosed with NCS and the only treatment the doc wanted for him was NO CAFFEINE and lots of water and gatorade. My son is 17................now what are the chances of a 17 year old teenage boy doing that? Next to 0.

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