bellgirl

I think most of us here are vitamin D3 deficient, like patients with MS...but a lot of the general population is too, evidently, and they just don't know it! Maybe because we have other health issues, it is more prominent a problem with us, and is checked more consistently...sorry, I guess I read it incorrectly.

I'm glad you are going to another doctor...we are all different day to day, and from what you have posted, you meet the criteria.

My ENT, Dr. Pappas Jr. from Birmingham AL. did a thesis on Autonomic Vertigo, and he diagnosed me!!

How can this be if most of us are deficient in vitamin D3?! Am I misunderstanding this?... I question this study...

It was the best batman movie yet Thanks for the recommendation, Montie, and glad that you also went, Wendy. I have never lived in fear. It's sad that people do crazy senseless acts that involves others lives, and my prayers go out to those families, but it won't stop me from living either. I refuse to let it get the best of me.

Going this afternoon to see it with my son, Logan, a friend, and husband, Tom. Looking forward to it...hoping I don't get too many surges. We went out to celebrate Logan's new job last night, and I got sensory overload in the restaurant, but we were sitting too close to the kitchen, the people were loud, and the music was hardly audible, but they finally dimmed the lights, and I was somewhat better. I loved all the others...

An IVP is an intravenous pyelogram, which puts dye in your veins to specifically visualize your kidneys, Naomi Sorry, I shouldn't have assumed you would know what that was... I also have head pressure that includes strange eye drainage when I am symptomatic, too; I've always wondered whether it could be CSF. Oh Issie, btw, I am also on a diuretic. I had trouble with ankle swelling especially in the summer time, even pitted edema at one time, so your not the only one. Normally, that would be like poison to a POTS patient, but remember that we both have hypertension with this, too, which is different than most, too!!

I have asthma, and made sure when I was put on a Beta Blocker that it was cardio selective, but even though, the first one I was on, I could hardly breathe. Now I am on bystolic, it took me awhile to get used to it, months, I'm a lot better now. I only use an inhaler when I am wheezing, which is usually during allergy season or when I am sick, because it increases my heart rate too much. I do get the physiological throat issues you are talking about, swallowing problems, and hoarseness, which makes it difficult to talk, and I don't do any public speaking, however I do sing. I believe I have some vagus nerve issues there, actually, from the dysautonomia.

Naomi...I've always thought that my POTS could be kidney related, because my dad had a Medullary kidney. That's why I am on Losartan. I would get an IVP, if you think that there is something going on with your kidney, not that they could really do anything, anyway...how frustrating...so sorry I like the POTS "sit in" idea Dizzy

Go...enjoy what you can, rest when you have to; don't worry about what other people think or say, because those are the "friends" that aren't really concerned anyway, be honest but quick in your explanation, if someone asks, because no one understands this unless they have it, anyway; drink plenty of fluids like gatorade and I'll be praying that you will have the energy to have fun and have safe travel!!

So sorry...insomnia is the absolute worst symptom, puppy You may need some medication stronger than melatonin. Have you been checked for sleep disorder? You know that about a third of POTS patients have sleep apnea, so talk with your doctor about getting checked. I went for years like this, and finally, I have a Cpap to help, along with Klonopin, and even Ambien, if I'm desperate. Sleeping is imperative to living!! Without it you cannot function properly. Are you on anything for tachycardia, and your stomach issues? Exercising helps I do not do anything on the computer at night, usually, because it is too stimulating, and I try to wind down a few hours before actually going to sleep.

Lurk away ...I've been tested for Lyme and negative, but have since been bitten by two ticks, ugh...going back to my neurologist in September. This time I saved the tick, yah!! I must taste good...I really live in the woods, though, but not up in a tree!! lol Dr. Levine has done many studies and many talk about him here. Hope you have a good appointment with him. Welcome to the site, Amy

The more I learn, the more I don't know, anymore . I still think there is so much to research, and I think just symptoms are being treated, not the disease. Now my teeth are shifting, which is indicative of bone loss. I need another bone scan. It's been about 5 years. More vitamin D, calcium, and magnesium please

I have MVP, and with BB, and L-Carnitine, I still have some chest pain, but it happens more in the cold weather, and cool water, too. Meds seem to help, but I think any time you are fighting an infection that pain will be more prevalent in your chest, because of your depressed immune system, and generally not feeling well. Also I tend to have chest pain when I am symptomatic, as well. Hope you start feeling better...healing prayers.

Medications help with this, but even out of the blue on occasion it still gets me out of nowhere, like Bren said, it doesn't necessarily have to be HR or B/P related, and it takes you unaware...you will get to the point of acceptance, but don't let it get the best of you , To better days, and we are all in this together. It helps to have the support from others, especially your dad being your own private medical person, who loves and cares for you

This is what POTS really is all about. I don't understand it, but I can relate to this...sorry this happened to you. I sometimes have trouble with all these symptoms, as well. It could be your sympathetic nervous system going into overdrive. Try to rest; since your vitals seem normal, I would just relax and try to do nothing. This, too, shall pass...

I have kyphosis, which is a curvature of the cervical spine outward at my neck, and have always thought this could be a contributing factor! I'm going to talk to my doctor's with my appointments in September.

Since I found out I was deficient in D, I have noticed improvement in stability and energy, but I'm also taking other things to help with this, too, so it is hard to tell what is helping which symptom...all I know is after taking 4,000 IU's for a month, and then 2,000 IU's for maintenance, I'm feeling better, but I also started the CoQ10 and some other supplements about the same time, and Klonopin helps with dizziness, too, so who knows. It could be all combined together. See below for meds and supplements.

Yes, this happens all the time to me, but I'm learning how to handle it...you need to spread out activities, so that you don't do too much in one day, or you will suffer the consequences. Every once in a while, it is worth it, because you want to do things with family and friends, but there are always after effects. You've got to figure out what triggers your symptoms and decide whether it is worth the time you need to take later to recover

I used to have dizziness/vertigo all the time and everything you mentioned above bothered me. With meds, I am so much better, but still get nauseated and have motion sickness with all of the above, but it isn't as severe anymore. I had two major episodes with vertigo where I was bedridden and throwing up constantly for days. That hasn't happened in about a year and a half now. Zofran allowed me to get on a boat just a few weeks back on vacation, which was amazing, and I even went para sailing!! I can drive short distances now, but before being diagnosed, I had several close encounters with curbs, and messed up my car twice, so it was time to get serious about a diagnosis!! I hope you can find a medication to help you!! I still have little vertigo bouts, but nothing like before. If I bend over too much, or stand up for too long without moving, lift up my arms, move too fast, I will still get dizzy. Some days are better than others...

Glad you are a fighter, by your last comment, because so am I!! GI issues can be very difficult, and it sounds as if you probably have malabsorption problems, as well. Are you supplementing your caloric intake in other ways other than food? I will drink Boost on occasion to get more calories and vitamins. There are a lot of supportive people on this site and a wealth of information. We are all your friends, here, because we can all relate to having dysautonomia Welcome to the site. I too, have problems with nausea. I take Zofran on occasion when I'm in the car. Small frequent meals help, as well, along with increased fluid intake. I sometimes take urogesic blue for bladder spasms or bowel spasms. I hope that your Gastro issues will improve. Prayers for GI healing, Sheila...

I try to avoid sugar and caffeine...I may have a glass of wine on occasion, but I wouldn't over do, because alcohol vasodilates your vessels, and can cause you to feel more faint. I try to use supplements to counter the effects of my medication at times. It's hard to find a balance when your autonomic nervous system is not working properly. Chocolate has sugar and caffeine, so it can cause you to be too hypersensitive to everything and cause adrenaline surges. I'm not on the medication you are on though, so can't help you there. I started out hypertensive, so I'm a strange bird...You can see my meds and supplements below. Welcome to the site. There is a wealth of information on Dinet, and a lot of supportive and encouraging people, as well

I can't stop living...I'm a fighter...Shan it did cause constipation, but I only took it 4 times. For the trip in the car, coming and going and on the two boat rides, but now I'm back to "Normal". Whatever that is...lol I will save the other doses for another long car ride. I hate all the other medications for dizziness. I've tried them all, and they all make me sleepy, so I won't use them, because I can't stand to be sluggish. Phenergan, meclizine, etc. My vitamin D is increasing with supplements, and so is my energy level, so that's why we decided to take the trip. I was feeling better, but I have to say, I've been very tired all week, because of it, but it was worth every moment I love the beach and the Gulf waters. I swam and snorkeled some; couldn't go deep though, because of my ears. It was very peaceful.

Yes, I do have migraines - but, thankfully, they are mostly silent ones with visual issues ----beautiful silvery stars and double vision -----but, when the headache is there it's horrible. I also always have a sort of head pressure. I've told my husband that it feels like I need to squeeze it and get some fluid or pressure out. He's even tried that ---it didn't work. But, I've been having issues with my eyes, feeling like they will pop out of my head and it hurts to look up. The eye doctors haven't been able to find a problem with my eyes though. So, we will see if this helps some of these things. Plus having EDS and a bit of a cerebral tonsil drop - may even help to get that back up where it should be and if there is pressure on my brain stem, then maybe some of my POTS symptoms "might" get better. So, we will see. And with my high bp - getting some of this edema off will help to bring that down some too. Issie I have the same issue with my eyes. I had double vision all last night trying to watch a movie, and the vision is so blurred in my right eye, that I'm not even bothering to wear my contact lenses!! I hate it when I can't see properly; so I guess I have silent ones, too! Then my eyes drain excessively, because of the pressure. I tell them this every time I go in, and they just look at me, like they don't know what to do!! It's frustrating and it's my biggest issue right now. When It happens to both, I'm in a bad way I am one with hypertension, too, so I can relate to the edema. I even take a small dose of hydrochlorothiazide, too. I'm always drinking like crazy

My husband and I took a trip to Perdido Key for our 30th wedding anniversary, and I have to say that Zofran works wonders for nausea in a car and a boat. My GYN gave me a the prescription. When she finally found out what was wrong with me, after years of symptoms, she asked me if there was anything she could do for me?! (I've never had a doctor ask me that before). She's a jewel. I said I needed a medication for motion sickness that didn't make me sleepy. They usually use it for cancer patients, but I was willing to try anything. It stops serotonin release. I even went on a boat twice; we went on a sunset sail, and I went para sailing for the first time in my life!! I'm still recovering, but I didn't throw up; it was worth every moment!! Joy, Kim