Ashelton80

A good cranial sacral therapist and atlas orthogonal chiropractic can reduce my symptoms by a lot. The problem I had was that neither held and the pain and tension would always come back. Cranial would come back in two days and the AO adjustment would last about a week. When I started exercising I was holding longer and could stretch it to two weeks. So I think it must have something to do with lack of blood and oxygen because the exercise increased both of those the neck pain wasn't as bad.

I went to the Pots treatment center and spent two weeks in Dallas. The only benefit I seem to get when I practice regularly is I have more regular bowel movements. That is also combined with eating gluten and dairy free while doing biofeedback seems to regulate things quite well. Other than that, I don't see any improvement is orthostatics, fatigue, etc. I know I was super excited to see the testimonials for the first time. It gave me hope and if you have the extra money, then I still encourage people to go and give it a good try. Younger patients seem to do well and the ones that live there and can continue to go regularly probably do better as well. I'm still 50/50. I met a couple of women there that it has really helped them and then I know a few that had similar results as mine. I have tried to stick with the home care doing it 4-5 times a week for almost a month and I just couldn't stay motivated doing it when I couldn't tell either way. Not sure this was helpful, but it's my personal experience. Good luck

I have been researching root canals and cavitations lately. I don't know if it's the cause, but I do know that it has to be one area that I need to address. That and amalgam fillings I've had for 25 years. I'm at the point where it needs to be cleaned up and at least take that burden off of my Heath and immune system. If it helps the Pots great, if not I'll move on to other things to help make my body healthier and less prone to illness.

I am in a similar situation with wisdom teeth. One has partially erupted and is trapping bacteria. I'm just trying to keep it really irrigated right now, but it will need to be done eventually. Its not good for your immune system to have toxins in your mouth, so I would just ask for anesthesia without epinephrine. Explain your situation and have someone go with you. I'm trying to get stronger before I have my amalgams, wisdom teeth and crown done. If you read a lot on root canals, cavitations, amalgams, etc. A lot of bio and hollistic dentists believe the root of chronic illness can be linked to the mouth. I happen to believe them.

If you read the insert and look at the studies you will realize that the flu shot actually does nothing to prevent the flu. That alone seems to be enough to say I don't want to take the risks that come with vaccinations especially when my body is already in a fragile state from POTS or EDS. There is no such thing as a "mandatory" vaccine in the country. There are exemptions and they are super easy to get as I have done this with my daughter for school. Not sure how it works with an employer, but I can't imagine they could force you to inject something into your body against your will or even fire you for it.

I agree with Sue1234. You only see the people singing her praises because that's all they post about on the website. I spent two weeks there and have since tried to be consistent with the home care, but have had zero symptom relief with POTS. I know two other girls that had the same results, but you don't hear about us. I get immediate symptom relief with gluten free diet and exercise so not sure what that says about my case. I think it's worth a shot if you have the time and money.

Removing the most common offenders gluten and dairy are a good place to start. At least 2 weeks, but probably more like 6 weeks to know for sure. There is so much junk in sauces and soups, especially at asian types of restaurants that it would be hard to nail down just one thing. Eating a very clean and simple diet works best for me. Chicken, eggs, veggies, nut butters, protein shakes,etc. all organic. I have had bad reactions to food like that many times.

Yes, her and I had a slightly heated conversation about salt. She told me salt was bad for me and I told her I wouldn't have been able to walk into her office if I hadn't ingested insane amounts of salt prior! This is where biofeedback is ONE tool. If you are nutritionally deficient, have toxicity issues, structural stress on your spine etc, I don't care how much you do your diaphragmatic breathing, it's only going to get you so far. The human body needs muscle and movement whether you have Pots or not. She's looking at it with too narrow outlook. Im reading UltraMind Solution by Dr Hyman right now and he does mention biofeedback and breathing techniques and believes they are beneficial. I have to agree, but it does irritate me a bit when she makes it out to be the ONLY thing we need to get better. We're you able to do any of the sessions or get the home care?

Ok thanks mytwogirlsrox.....my body is exhausted tonight after the Fludro throwing me for a loop. I will say I felt more alert and more energy, but it was not a good energy. Like crazy jittery drank too much coffee energy. Ugh. I can't take it again because I'm just so worn out and I need to sleep! And yes the arm and hand numbness/falling asleep was definitely a symptom I have never had. Pretty sure I won't be taking that again.

I took a tiny dose of it last night before bedtime. I felt fine and at times a little warm all over which was actually sort of relaxing and calming. Slept ok, had some weird dreams, but nothing out of the norm. I do remember my hands and arms going numb a lot which has never happened before. Then this morning when I woke up I immediately felt anxious, I would just shift or turn over and my heart rate was sky high! Once I woke up completely I took my bp and it was 89/59. Probably the lowest reading I have ever gotten, especially in the mornings as my bp is high and then it's lower during the evening. I hate feeling like a crazy person! Anyone know why this would happen? Normally I'm perfectly calm in the mornings unless I'm going through a huge flare, which right now I'm not. I'm just right at baseline symptoms for me.

http://www.holistichelp.net/dysautonomia-autonomic-nervous-system-dysfunction.html I think this article sums up the complex and multifactoral issues when it comes to the autonomic nervous system. When I hear people say "I was running marathons, working 3 jobs etc" so I wasn't deconditioned this is exactly what I think of. Burnout. Especially the section that talks about Cortisol steal from aldosterone, dhea, testosterone, etc. I have had low values on all of these hormones before. Of course nothing was addressed.

Anoj, I am right where you are at the moment. I know the things that make me better and I'm not doing them. This condition just wears us down. I get tired of fighting and pushing. My husband hates when I say that and I know I will get back up and fight again, but it's the honest truth. I don't believe I'm going to be like this forever. I truly believe I will live a great life without disability one way or another.

Exercise is definitely key for me as well. I seem to need to do both the aerobic type and the weight lifting or resistance training. I think the resistance training actually helps me more than pounding 30-40 minutes on the bike. The only thing I'm confused about is after I reconditioned last summer I took a break from exercising and gradually all my Pots symptoms that had gone away returned. At this time I was still functioning fairly normally and had not spent a day in bed in months. Why do we decondition so quickly?

The girl I posted about a few days ago that considers herself in full remission from Pots has EDS. The other one had Sjogrens, so I would say absolutely it's possible!

Awesome news! Love to hear someone doing well! Thanks for sharing!

Just wanted to post about two friends of mine that were both diagnosed with POTS. One friend was diagnosed last October after surgery. She now considers herself to be in full remission. I know everyone will want to know what these ladies did to get better, so she took Florinef, exercised and weight trained, Biofeedback and eats clean. She stressed all at the same time and very consistently is what got her there. The second girl I have known for several years Pre pots. I ran into her at a local restaurant one day last summer and stared chatting. We started talking about exercising and she told me I didn't need to because I was so thin. I told her I didn't do it for weight reasons, but because I had a condition called Pots. She was floored because she had been diagnosed with it too. A year went by and I texted her the other day and she told me she was100 percent better from Pots and ready to go back to work. She was finally diagnosed with Sjogrens after 6 years of being sick. She takes a 5 mg dose of propranolol and b12 shots. So, both of these ladies are very encouraging. Thought I would share good news. Neither one of course visit here.

Ok Thank you! That time frame isn't long at all. If all he does is a poor mans tilt, how does he determine what your treatment looks like? Just based off of symptoms?

How long does it take to get an appointment with him? Does he do additional testing? We vacation in Watercolor several times a year and Pensecola is only an hour or so away. I was thinking of Going back to Dallas to see Dr Suleman, but this would be a much easier trip! Plus we could sneak in some beach time. I always feel better down there!

I experience this when my system is really flared up. It's much better in general than a few years ago, but I put on my sunglasses today in my husbands office because he has can lights that shoot right down in your face. When I was in Dallas the weather was very unstable and I'm sure the heat is terrible right now. That definitely doesn't help things. Have you been able to do any of the biofeedback program at all? I called Andrea yesterday frustrated with my lack of symptom reduction even though I have been diligent with it for a month now and am quite good at staying in coherence. Hoping things improve so you can get back home. You will feel so much better when you get back. For a while when I returned I thought if I survived that two week ordeal I can do anything!

I have a friend who thought she had POTS although Dr Levine told her didn't think she did. Her symptoms were similar to mine with one major exception being my symptoms are based on position relieved by lying or sitting and hers were not. Either way she started acupuncture and Reiki and is basically almost back to her old self again! Doing things she hasn't done in years.

I'm doing ok at the moment. No where near where I would like to be or where I was last summer. I can drive short distances and eat at restaurants, but that's about it. No shopping or anything that requires standing for long periods of time. My results from the biofeedback were lackluster, but everyone is different and I don't want my experience to influence yours. I am currently still doing the at home breathing equipment that she will give you. I still believe in it enough to keep practicing it although I haven't seen a huge benefit. I do feel my sleep is better and my IBS is better. Mayo and Dr Suleman recommend it, so there has to be benefit. Good Luck to you and hope you get some answers and improvement while you are there. I just had to keep telling myself the whole time I was there that I could do it.

Here is my experience with this after 8 years of being under chiropractic care and 3 1/2 of those being ill with POTS. Pre-pots no trouble ever with any adjustments. Post-pots example 1.....neck adjustment aggravated symptoms shakiness, nausea, dizziness horriblely one day. It was really traumatizing. This was before I knew what was wrong with me and before I or my chiro knew the pattern of subluxation in my spine. The best way I can describe it is your spine is a lot like your teeth. Each vertebrae has a pattern it always wants to go back to. Even if it's out of alignment. Just like when you put braces on teeth and you take them off. If you don't wear your retainer the teeth will eventually shift back into the same pattern as Pre braces. That's almost always how the spine works. So I decided to go to a very specific technique called Atlas Orthogonal google it. It uses VERY detailed x rays to determine the position of the atlas or first bone in the neck in turn creating a more specific adjustment to your pattern. Once we established this, even though I prefer AO because of its gentleness my regular chiro can also be more specific instead of aggravating. A wrong adjustment can be awful, a right adjustment can literally have me functioning 60 percent better the next day. My point is there is no "damage" per se. If it can be done, it can be undone.

Call Dr Kyprianu and tell her you want an appointment with Dr Suleman. She worked with him for years and can get you in with him very quickly. I wish I would have seen him while I was there. I also hated the fact that it was on the 10th floor! There were some days it was difficult for me to stand and wait on the elevators and ride it up so far. My symptoms were aggravated while I was there just from the stress of being away from home, but I wasn't in the shape it sounds like you are. I'm sorry . What a miserable feeling.

When I went to Dallas for the two week biofeedback program at the Pots Treatment Center a rumor was started in my small hometown that I was in rehab for marijuana. My husband said he wished, it would be way more fun!

Atlas Orthogonal chiropractic technique has helped me tremendously. There is no doubt that if I let me neck get in bad shape that it makes things so much worse symptom wise. Like right now, I have waited too long in between visits and my body is so on edge I can barely function. Kicking myself! All the cracking you guys are referring to when you move around is the body's way of compensating and moving the vertebrae around the subluxation to protect the spine. There have been times when I couldn't get to my AO chiro 4 hrs away, so I used the diversified or manual technique and it's usually fine, but I have had a couple of unpleasant reactions. And yes the Autonomic nervous system starts at the cervical spine so it makes sense.