kitchmill

My acupuncturist is a pain management specialist. He's an MD in addition to doing acupuncture... the only reason I went to him!

I started seeing an acupuncturist for my migraines and it turnes out that an added bonus was that he was able to add a few pins to my stomach and all but get rid of my near-pass-out cramps. It also lightened my period significantly. I used to have to have my husband carry me to bed when the cramps would hit because I would get so close to passing out. A few sessions with the acupuncture lasted about 5 months and then I had to have it done again, but it's so much better than any medication I've tried!

I posted a few weeks ago about something called the Feingold Diet, which is a diet that eliminates all synthetic food dyes and flavors, preservatives, and also the naturally (and artificially) occurring chemical salicylate from what you eat. I came across the diet in doing some research for possible ADHD for my son, and the theory behind the diet is that the behavior issues and other problems (that my son exhibits) are caused by CHEMICAL SENSITIVITY in every day diet. The more I thought about it, the more it made sense that if I had chemical sensitivity, then my son could have it as well so now we are both on the diet to see if it improves our every day lives. Him for behavior and other issues, me for POTS type reactions and general health. I'm still learning more about the diet and what foods to avoid (which is not really easy for a family with 2 working parents and 2 kids in daycare - can't monitor what they eat there, and not much time to cook healthy!), but we are hoping to see some results from avoiding these chemicals. The theory in the book sounds exactly like what you mentioned - the first time no reaction, then the body reacts to a chemical the 2nd time it's introduced. So, I'm wondering if ridding your body of all of the bad stuff that's already in there might make you more able to tolerate what you actually need, or might help you feel better to not need so much medication in the first place. The synthetic food dyes that are in our foods, lotions, makeup, etc. (the "FD&C No.'s) are by-products of crude oil. Do we really want to be ingesting that on a regular basis and putting it on our skin? It's in so much more today than it used to - think about colored medication, colored food, toothpaste, etc.

The symptoms can vary for everyone, and even cross over with quite a few POTS symptoms, which is why it's important to make sure your thyroid is under control before you try to treat POTS symptoms. Some of the common hypothyroid symptoms are fatigue, weight gain (slow metabolism), constipation, dry hair, dry skin, dry nails, dry eyes. Those are the ones that show up for me immediately as soon as my thyroid goes a bit off balance, but I'm sure there are a ton of other ones that I'm forgetting at the moment! There's a great book by Mary Shomon called Living Well With Hypothyroidism. That's a great place to start to learn more about it. Or, she runs a website dedicated to thyroid issues on About.com.

I've never heard of leg pain being associated with Synthroid or any other thyroid med, but stranger things have happened - especially to those who are chemical sensitive. I tend to always have reactions that are not listed in the drug side effects! As far as being hungry all the time, that could be a result of your increased metabolism with increased thyroid function. But, that and hot flashes could be signs of dipping into the hyperthyroid range, or it could just be taking your body time to adjust to the dosage. You might want to ask your endo for the actual lab results so you can decide if you think you are too close to the hyper range. Maybe they could lower the dose a bit so you don't feel these effects so much. Everyone is different though... for me, I'd rather have the near hyper side effects (as long as they don't get too bad) because as soon as my thyroid function slows down the slightest bit I feel horribly hypo. All of my symptoms come rushing back. So my endo is happy to keep me towards the hyper range as long as I am happy there.

I was researching information for ADHD for my son and the Feingold Diet was suggested to me. Essentially, it's the elimination of lots of chemicals (including aspirin-like chemicals) and dyes in food. As I was reading about it for my son, it seemed perfect for all of his symptoms, which is more than the ADHD-type symptoms. And then I realized something - if *I* am super sensitive to chemicals, then it makes sense that my son could be too (which is why I am planning to try this diet for him). So then I got to thinking, if it could help clear up some of my son's symptoms, could it possibly help me too? Maybe I've been ingesting all of these bad things all of my life and I'm more sensitive than the average person to this stuff. Maybe eliminating all of it from my diet could help alleviate some of my daily aggrevations, or at a minimum keep me from getting worse. So I'm considering it... but also wondering if anyone else has heard of it or tried it. There are lots of websites out there that give basic info about what to eliminate (just google Feingold Diet), but it looks like to be serious about it you would want to join the Feingold Association ($) and get their materials.

I live in PA, but we were at the NJ shore... humidity was also a problem here too yesterday, and will be all summer! I was actually lucky to be at the beach with the ocean breeze, instead of at home where it was about 5 degrees hotter with no cool breeze. And I did drink ice water, but I drank the water before the ice had time to make the water cold! The cubes were still practically whole when I finished.

I take Topamax (also anti-seizure) for migraine prevention and also hate it. It didn't do enough to prevent the migraines for me, so I ended up trying acupuncture which is helping more. But what I found was that I needed to wean off of the Topamax VERY slowly to prevent more migraines from coming back. So although I hate the side effects, as long as I take it slow with each step down in dose (and know that there IS an end in sight), my migraines stay under control. Instead of going down by one dose each 2 weeks, I actually will alternate doses daily for 2 weeks and then step down to the next dose. My acupuncturist (who is also an MD) suggested this since I was getting the rebound migraines each time I stepped down. I hope you find some relief soon. For me, the migraine pills that I took when I have a migraine had side effects that were just as bad as the migraine itself, so I really needed to find an alternate method. If you can handle the RX for the migraines when they come on, then no problem.

Yesterday I was on the beach with my family. It was a really hot day, but there was a cool breeze and I was trying to stay hydrated. We weren't planning to stay long so I thought it would be ok - really just wanted the kids to have a good time before we had to leave my parents' beach house. Anyway, I was feeling the heat the whole time, but I actually got to the point of saying, "That's it, I have to leave RIGHT NOW." A few times when I tried standing up, I got lightheaded. My husband was fine with keeping the kids there for a bit longer while I walked back to the house immediately (about 3 blocks) but I was honestly afraid that I wasn't going to make it! Made it back to the house, drank a ton of water and took a cold shower. Since then, I've been having severe stomach cramps. I kept trying to go to the bathroom, but I was totally constipated (love that IBS!). Before I went to bed last night, I put a heating pad on my stomach because the cramps hurt so bad. Finally, at 4:30 this morning, the cramps woke me up. In and out of the bathroom several times with constipation and finally diarrhea, not to mention horrible sweating. I think I finally feel better now, 4 hours later! So, is any of this related to being overheated yesterday? Or just a total coincidence that it came on right afterwards? Is there anything else that you get after being overheated? I've always had a low tolerance to heat, but I guess I'll have to really limit my time on the beach this summer. It seems like yesterday was a million times worse than normal.

Are you hypothyroid? If so, it sounds like maybe your doc is giving you too much thyroid supplement and you are becoming hyperthyroid with the meds. The symptoms you describe are hyper symptoms. Maybe you need a lower dose. I need for my thyroid to be well controlled in order for my POTS to feel good, and that meand my Endocrinologist is right on top of my thyroid dose.

The NeilMed system is the one I got. I need to be a little more religious about using it, but so far, so good. My allergies didn't actually develop until after I graduated from college, and I've had POTS all my life, so no relationship there. But I also have sinusitis (every allergy outbreak turns right into an infection) so I have to be really careful about keeping my sinuses clear.

I'm outside of Philly and have not seen this dr. but would be interested to hear anyone's experiences, too. My cardiologist just suggested that maybe I need a neuro and my local neuro knows a little about POTS (she's the one who suggested I get the TTT in the first place) but doesn't treat it. So if anyone has experience I might be interested in going to this dr!

All my life, or as long as I can remember. But I was only diagnosed about a year ago and I'm currently 32. Thankfully, I am not debilitated by this, but it does severly limit my life.

I tried a nasal rinse this morning. That sure is going to take some getting use to! But the concept seems right, so hopefully it will work. I'm up for anything at this point.

If you can't get back into your old doc, I can find out the name of my sister's rheumatologist that she really likes. The doc is in either Plymouth Meeting or King of Prussia. Not sure if either of those would help you.

I currently take Zyrtec and Flonase daily for allergies, but for the last year I was getting allergy shots to help control chronic sinusitis. There were several problems with that though. One was that I was not allowed to take my beta blocker on the morning of my shot because of the possibility of a reaction to the shot. So, once a week I would have to skip a pill and I would have increased episodes that day. The other problem is that you're not supposed to get the shot if you're feeling sick, and I feel sick more than I feel good! So I was constantly skipping shots anyway. About a month or so ago I stopped the shots but I still take my daily meds. Of course, I have already had 2 sinus infections. Now I need to find some new solutions. Anything in addition to the meds that will help control the symptoms so I don't have to go back to shots that make me feel horrible and keep me from taking medication that I need. Does anyone have any natural solutions? What remedies work for you? Anything you're already doing for POTS that might help?

I couldn't tolerate florinef because of other side effects. But now I'm wondering if the BB is right for me at all... the doc's assistant said that my monitor showed no signs of tachy this last time (although it did a year ago), but that my events are caused by low BP. So, sounds like I need something like midodrine, not a BB! Don't have too much tachy to control but I need to raise my BP to get rid of my episodes.

I thought my cardiologist was going to change my medication from acebutolol (200mg, 2x day) to something else after all of my complaints that I am so tired. My blood pressure is (and has always been) normally low, so my potsy episodes lower it more and he thinks that the beta blocker lowering it might be contributing to my fatigue. Frankly, I never understood how something that causes my BP to go lower was supposed to help me to begin with! Can anyone explain that to me? The first BB that I tried made me feel horrible (atenolol). I felt like I had the flu all the time. So anyway, after wearing a heart monitor for 2 days that showed nothing (I didn't have any significant events, of course!) and my labs came back fine, he really doesn't want to make any changes. He only told me to drop the BB down to once a day. I'm expecting that will just give me more potsy events, since I already have experience with skipping pills. I used to get allergy shots and on the day of my shot I wasn't allowed to take the BB and would always have more events. Now I am trying to figure this out on my own. Don't I really need something to RAISE my BP? What class of meds is that? Can anyone give me info on those meds... how they work, side effects, exactly what they are used for, how they are used, etc? When I call my doc back, I want to be armed with as much info as possible. They want me to try going to one pill for 2 weeks. We'll see how long I last but I want to have as much info as possible for whenever I need to call. TYIA!

I am glad he is getting better! Glad you persisted... I think most of us here know that WE have to be in charge of our own health.

I've pretty much been exhausted my whole life. I can fall asleep at the drop of a hat, nap anywhere, anytime. I just deal with it basically! I have 2 young children that don't always let me slow down, but sometimes I have to let them run around the play room while I lay on the couch and I will admit that they spend more time watching TV than I would like, but sometimes I am unable to do much in the way of taking them out to play.

Tons of hugs!!! I've been through a similar situation in my previous company with the job changes causing unnecessary added stress so I know what you are feeling. I hope you are able to find a solution.

Just add me to the "too skinny, eat more salt, low blood pressure is GOOD" club. That's what I've been told all of my life. I can't believe some of these doctors. I'm so glad that I finally stumbled onto someone who knew what I was talking about!

Wow, that's amazing! I did have Lasik about 6 years ago and am so glad I had it because I was having so much trouble with my contacts. Of course, that was long before my POTS diagnosis. But so interesting that an optometrist knew about POTS!!! Rachel

I should mention that my acupuncturist is an MD (that's the reason I chose him) - otherwise I wouldn't have taken his advice on this. Ernie, I also tried a combination pill that had bee propolis, royal jelly, and bee pollen. I tried that for the immune boosting effects and I actually liked that better than the plain royal jelly. The problem is that my local store isn't carrying it anymore and I hate ordering this stuff online! Rachel

Like some of the others, my neck pain is associated with my migraines. I get pain either on the side of my neck, or right at the base of my head. Either place results in migraines for me. When the pain starts coming on, I know that it will be followed shortly (within a few hours) by a migraine. I've tried tons of migraine meds, and what's finally worked for me is acupuncture. I don't get the pain nearly as often, and when I do it's much more managable.