bellgirl

@rje11 I had a wonderful neurologist in Birmingham, Dr. Riser; he worked with me some, but usually took care of MS patients, and didn't know enough about Dysautonomia, but he was my favorite Doctor and was willing to learn. He let me talk until I was done asking questions and adding what I had learned with him, however, and was very empathetic. I also went to Dr. Phillips at the Dysautonomia-MVP center in Birmingham mvpctr.com, and she was great knowing what meds I needed to keep me stable; she did my first echo, stress test, EKG and TTT. She diagnosed me with Dysautonomia/MVP/POTS, and dealt with one issue at a time with medication for 7 years. In Huntsville I found a cardiologist, Dr. Kiessling who has diagnosed others with POTS, so I went to her, and she is great giving me a echocardiogram and reading it before I left the office, which is great for me. My PCP is wonderful, too, and will write all my prescriptions, too, so I have no need to go back to Birmingham, anymore. I just don't do well traveling. I need to medicate to travel, and didn't feel the need to go back. You may need a neurologist who is familiar with POTS. I've heard that Dr. Hitchcock, and Dr. White in Huntsville and Dr. Kazamel at UAB are good neurologists for Dysautonomia, although I'm okay right now with the meds I'm on, so until I need something more, I will stay with my Rheumatologist, Dr. Phillips, Tim Byrum NP, Dr. Strickland my PCP, and Cardiologist Dr. Kiessling.

I have Autonomic Vertigo. There is nothing wrong with any of the vestibular testing that was done. I had at least 4 tests. My doctor specifically did a thesis on Autonomic Vertigo, and no matter what medication I am on, I still have it. I'm not as nauseated, dizzy, misjudging curbs, as I did when I was first diagnosed, but I do take zofran on long trips, and that does help. It hits when I least expect it, and yes, it's like fainting without passing out, to relate to what you are talking about. I broke my foot last year, falling backwards off a retaining wall. I did a 180 degree in the air, and thankfully didn't land on my head on the cement, but the brunt of my fall was on my left foot!! I couldn't right myself and would have fallen about 3-4 feet on my head. Sometimes I think I can do all the things I used to do, but I really can't.

Yes, I get the "ify" part; to top it off I only had 5 days of the Doxy, so I'm not convinced I'm rid of it either. My Western Blot was done in 2011 before my bulls-eye, and then I had it done again, but it was way after, as well. Mind you, I've had other tic bites that were inflamed, too, that I was also treated for Lyme with antibiotics. Now the CDC does more thorough testing, which I never had done, but kind of wish I had done it, back when I had the bulls-eye. My Western Blot was done in Birmingham at reputable labs, but I'm still skeptical, because my results were just on the border, and this was two years after my bulls-eye rash, so I'm not really sure that there aren't some beasties floating around in there still. I still suffer with a lot of achiness, especially when the weather changes.

What testing did they do for Lyme, Issie? Because I live in the woods and not only found tics on me, but had the bulls-eye rash once. I even have pictures of it!! I was treated right away with doxicycline, though, as a preventative, but I still become fatigued and am limited to a degree, but not as bad as I used to be. I'm also older, too, so sometimes that could be why I'm not as energetic as I used to be before all of this!!

They are medical doctors. I went to Dr. Phillips, and liked her, but since she was about a 2 hour drive both ways for me, I now have a cardiologist in Huntsville, who also has diagnosed POTS. They can recommend nutritionists, and other physicians, but I go to a homeopathic doctor, who is also a medical doctor here in Huntsville, Dr. Calvert, through his business Renue. He uses metabolic code to figure out where you need to be with supplementation and all the supplements are American made. I'm on aged garlic, and high doses of niacin for my high cholesterol. I take a lot of supplements, antioxidants, vitamins and minerals, etc. I also take a natural vegan energy drink before going to the gym. I also watch my diet. I just recently took an advanced probiotic, with prebiotics, too, and it really helped my GI tract. My hematologist ordered it for me, as I went to him for anemia and my iron binding capacity was also abnormal, but now all is well on that front. It was prescription strength probiotics. I'm also on bio-identical hormones, too, so I'm feeling so much better. I've decreased my doctor base to 5 instead of 8, so I'm happy about that. If I need a neurologist, I'll find one in Huntsville, too. But right now I'm good.😃

The doctor's at the Dysautonomia-MVP Center are Dr. Susan Phillips and another woman Dr. Paula Moore, too; Dr. Watkins, the cardiologist is no longer there. He had to retire due to medical issues.

Yes, Issie; there is the mvpctr.com Dysautonomia-MVP Center in Vestavia Hills, Alabama; I went there for 7 years, but once I found a Cardiologist who diagnosed POTS in Huntsville, where I live, I left. They diagnose, and manage medications for Dysautonomia, and have good recommendations for other doctors in and around UAB for other issues; I hear there is a neurologist at UAB, who is an autonomic specialist, who is taking appointments, but there is a long waiting list. His name is Dr. Kazamel. One girl, who just made an appointment is going to see him in May. Vanderbilt also has autonomic specialists, too! I hope this helps. Coming from Arizona, where some of the best doctors are there from Mayo, Vanderbilt and Mayo work together!! I hope you are doing well!!💙

My husband has taken down every flourescent light from our home. I can't stand to drive at night either. I hate to go anywhere with flourescents, which seems to be everywhere you go, anymore. I wear sunglasses everywhere or I suffer the consequences. I've always had one pupil that is more dilated than the other. I also have issues with vertigo, double vision and blurred vision before being treated. My vision actually has improved, because I spend most of my days on the computer, and don't need correction for close up vision without my contacts. I also take a medication to increase my fluid retention, so that I have a higher blood plasma, and it's even improved my symptoms! I was diagnosed with cataracts about 6 months ago, though!

Clonidine helps with blood pressure spikes. Most people are only on it for emergencies for high blood pressure, but I'm on it daily. It keeps me stable, but I'm also on Losartan and Bystolic is my beta blocker. I've had high blood pressure for almost 18 years, 15 of those years I've been on medication. I had what I believe was a slight stroke on my right side, because I wasn't on medication. Strokes run in my family, so I can't fool around. I'm not saying this to scare anyone, but so you will be informed.

I'm now taking clonidine .1mg daily, so my Losartan dose has been decreased to 50mg. because of it. They work well together for me anyway. I'm no longer taking the HCT. I'm on Florinef for retaining more fluid, because of fluid and electrolyte balance. I also take Flexeril fairly regularly at night for muscle spasms, but I also have Fibromyalgia.

I haven't been well enough until now to last through a whole conference before this, Jesse, so I'm excited to attend for the first time! Hope to meet you there!!

If anyone is interested in going to the Dysautonomia International Convention in Washington DC from July 17-20th, It's $200 until June the 1st, then $250 there after to attend. I'm going, my sister lives there, so I have more than one reason for going. I've met two other people that are going on line, that I will finally meet in person. I'm very excited about it, since medical research is what I do as a retired RN. I hope some of you will go as well!!

That's great news!!

This is such a small study, but interesting; I'm not the least bit excited though, because that means we have an organic brain disease, which I'm assuming can't be reversed?? Yes, POTS is real; we know that already, but now we have neurotic personality traits, too, and if it is degenerative, that's upsetting to me, also. From what I have read, there are Lewy bodies in the spines of post mortem POTS patients. Now they are talking about being able to determine a Lewy body disease in Multiple Systems Atrophy, as compared to Pure Autonomic Failure in live patients in their MRI's of the brain or PET scans? They said nothing of the corpus challosum. I'd be curious to know, since mine is small, but I don't have any mental deficit. I'd be interested to know if they do any further studies. Thanks for sharing...

It happens to me all the time. Singing in the choir at church does help me tremendously with my tidal volume, however I do have sleep apnea, too. It expands my lungs, so that I don't feel as if my chest is in a vice!! Love your idea of the Hallelujah chorus, Sunshinegirl!! I sang the whole Messiah in choir years ago! It was so awesome!! One night I woke up and couldn't breathe properly for a half hour, even with my Cpap, though. I also had a dream of being in a cold horse arena and not being able to breath; sure enough, I woke up NOT being able to breathe. I want to purchase a pulse oximeter, so the next time this happens, I am ready. I should have taken my B/P and pulse, but I was too busy trying to breathe!! Deep breathing does help with this...going to the beach is even better!! I have a peace that passes all understanding there. I just came back from a trip to Panama City, Florida for my mom's 85th birthday. It was wonderful, especially at sunset!