bellgirl

I've been on many forms of Estrogen over the years. I wouldn't have survived menopause with POTS without it. I think the nuvo ring is a good choice. It is low dose with the least side effects, but effective. I think it helped with POTS. I wouldn't worry about the port. It's just a sensitive area. Have your doctor check it when you have your appointment to make sure there is blood return, if you are still concerned about it. Glad you are doing better

Wonderful Praying for continued good days ahead!

Did you ask your doctor? Sounds like POTS to me...Are you sure he didn't give you a diagnosis? Those are all the medications and treatment for it. Sorry that you have to be here. Dizziness/Vertigo, fullness in my head, fatigue, neck stiffness, jaw pain and tremulousness were my worse symptoms before diagnosis.

It is a depressant (antianxiety), but is also a vasodilator...yes, it has a calming effect, but be careful, like you said it can dehydrate you, because it causes diuresis (lots of urinating). I will have a glass of wine on occasion, but that's usually it for me!

Go for it, Yogini What have you got to loose? Just be careful...don't "hug" the ground, please!! Keep those arms and legs strong. I do the elliptical, but I am holding on...don't think I could do "real" tennis yet. Table tennis is a start, though

I have problems that wax and wane with my right side neuritis, heaviness, numbness, electric shock type pain and stroke like symptoms, trouble forming words on occasion (or saying the wrong ones), memory loss, vision issues, and I have stroke in my family, too, so it is a concerning issue for me; I agree with all of you, I will have to be really dying to go to the ER again, because being there for 8 hours after coughing up blood once, was enough for me. I had to be checked for a pulmonary embolism by a lung scan. I'd rather be home than in the hospital; I'd rather be laughing than crying, any day, so thanks that you all have a wonderful sense of humor!!

My dizziness is better, too, puppy, my heart rate and B/P are more normal most of the time on meds. My energy level has increased due to Vitamin D supplements (my blood work showed a major deficiency in D), so I'm not as fatigued either. I still have major vision issues, that I need to get addressed that wax and wane, but all in all, I am improving, too!! Glad to see a positive post

What a wonderful affirmation So happy for you, that you were able to get a diagnosis and treatment, NOT that you have POTS But you already knew that, anyway, and you have plenty who understand right here...Hugs

Sorry this happened to you; I would get this redone, because if your resting heart rate is normally 80, than you do meet the criteria for POTS. Talk with the doctor about this, even if you have to make another appointment, so that you can at least get some treatment like Anoj said...

I think you might have sleep apnea. I went for years without any sleep, and I am a new person with a Cpap Don't give up hope...By the way, you don't have to be over weight to have sleep apnea. I only weigh 105#...lol . I went to UAB in Birmingham, Alabama. They check EKG, EEG, oxygen concentration, limb movements, breathing movements (chest and abdomen), and arousals, apnea, hypopneas, and types of apnea, obstructive or central nervous system apneas. I would highly recommend this group. Dr. Adams was my doctor. I did not sleep well the first night with Klonopin, so they gave me Ambien with the Klonopin the second night, and tried me out on different masks. The process was horrible when I think a total of 127 wires, and about 28 leads in all, but the result was worth it all! I still have dysautonomia, but I'm alot better with the Cpap and meds.

I started doing a lot of research on supplements, and I believe that a combination of all of these things together, supplements, medication, diet and exercise is what it took to get better. I took a hard look at all my symptoms, so you need to do this individually, too, and by trial and error, this became my regimen. I take L-carnitine about twice a week; it is an amino acid that is a transporter of fatty acids into the mitochondria of the cell, it helps with fat metabolism by improving muscle and bone mass ( I have the propensity to develop osteoporosis, being menapausal, my stature, and it runs in my family), it helps with lung function (I am asthmatic), kidney function, ( I'm on an angiotension antagonist for B/P) and heart conditions (helps with heart pain which I have, along with Mitral Valve Prolapse), and it also has an antioxidant effect to fight free radicals, which is great for the immune system!! I also don't eat a lot of red meat, which is where you also can find this, too, so I decided I needed it to help me to use my fat wisely. I also take vitamin C, and Magnesium, too, that I forgot to mention, and drink boost, and take whey protein on occasion, too, when my husband makes smoothies. I was also very deficient in D3, which I found out through blood work, so after mega dosing for about a month, it made quite a difference in my energy level. I'm now back to a maintenance of 2,000 I U's of D3. I would suggest to also get vitamin B12 checked regularly, as well, since a good many of us have found to be deficient in this, as well. Not me, but others...

I agree with Katy...my holter and stress test didn't show anything either, yet my TTT showed I had dyautonomia, along with my echocardiogram that diagnosed my Mitral Valve Prolapse! I only had a 24 hour holter, that became unplugged during the night, and I had already started my beta blocker, though, so I believe it was worthless. I feel my irregular heart beats all the time and my blood pressure cuff detects them, as well!!

I played ping pong with my husband yesterday, and had so much fun!! Then we danced a very short dance, and he stopped me from careening into the car parked beside us in the garage. Just a short bout of vertigo, but then it was over . I've come a long way in only a years time. My vitamin D, CoQ10, B complex, L-carnitine, and alpha lipoic acid have helped immensely, and all my meds, of course, and exercise have helped, too. I have much more energy!! Just wanted to post something positive Joy, Kim

This is a wonderful site to come to for support and medical information. Many times before I was diagnosed, the DINET site would pop up with the questions of the symptoms I was experiencing, and there is a wealth information here. I'm sorry you are having so many issues. If I were you, I would get a good sleep study done at a clinic that tests for more than just sleep apnea. It sounds like insomnia is a major problem for you, and those of us with dysautonomia have a 30% chance of having sleep apnea. It's amazing the difference it makes to get a good night sleep . I sleep with a Cpap machine, and it's made a world of difference for me. You can't live, if you don't get adequate REM sleep. Certainly, you should be able to find a Dr. in the Houston area that is familiar with Insomnia and Autonomic dysfunction. There are so many major medical centers there. If I were you, I would get your TTT repeated, with EKG, stress test and Echocardiogram by an Autonomic Nervous System Physician at a Major medical center in your area.

Welcome to the site. I've heard of this testing, but I initially had a tilt table test, stress test, EKG and Echocardiogram...sorry you have to be here, but it sounds to me that with all those symptoms, you most probably are in the right place. You need either to find a cardiologist/ neurologist or an Autonomic Nervous System Physician in your area like Katybug said. I am on a medication that acts on the Baroreceptors of the vessels, Bystolic, and used to be very tremulous, had jaw pain, hand/wrist issues, other neuritis, tachycardia, anxiety, nausea, IBS, fatigue, and vision issues. I also have B/P issues, too, MVP and sleep apnea. I had a virus 14 years ago that started it all, so it is not uncommon for a virus to be a precursor to POTS, although no one really knows what causes it. You need to get a Tilt table Test to be diagnosed, and someone with this knowledge of this testing process would be a doctor to see.

Clonazepam (Klonopin) helps with dizziness, and helps me sleep and decreases heart rate at night. I take this to decrease brain activity at night and help me sleep, since I also have sleep apnea with Cpap. This was before I was put on a beta blocker. I have never taken Xanax.

This is very nice. I appreciate this, because I like poetry and write some myself. Very sweet sentiment...

You sound like I was taking care of my brother in law after his open heart surgery!! It's a good thing I went to the doctor, when he was discharged from the hospital; I probably just needed to change places with him, and taken a nap in his bed . When you are concerned about a loved one, it is only normal to feel overwhelmed, and all the things that Ophelia mentioned are key for us Potsies. At the time, I was still undiagnosed and had major blood pressure problems, tachycardia, and MVP, sleep apnea. I completely understand. I would do what yogini suggested; have someone go with you. Get plenty of rest, when you can, and definitely sit down when you get to the room. Make sure you drink plenty of fluids, and take deep breaths, and try to keep calm. I'll say a prayer for you and your mom!

I would call your doctor; there are many beta blockers out there. Either the dose is too high, you need to try another, or tweak your other meds to compensate for the difference.

First, is it warm to touch or are there any red streaks? If so, call your doctor immediately, because it could be a blood clot. If not, and if it were me, I'd get a good ankle brace to give it support. When I had a bad ankle sprain about a year and a half ago, that extra support made all the difference. There are ankle exercises that you can do, too. Did you wear high heels, and than wear flat shoes? That can cause the problem you are describing, too....I would check with your doctor, anyway, since it has been two weeks.

Memory foam on top of mattress helps, and lots of pillows maybe?! Sorry you can't sleep...I have sleep apnea, and went years without sleep. You just can't function when you aren't sleeping...

Thanks for the post Rama! Glad you are getting answers Issie. It was a post when you were mentioning the growths that they were finding in various organs, but I can't remember which one. It's been months ago now!

I was tested for Sarcoidosis, but not small fiber neuropathy...Negative on the Sarcoidosis. Issie, I mentioned Sarcoidosis on a previous post to you to see if you had been tested. Glad that you are testing for that. Sorry about your family history, mines not good either

My neurologist tested me for this, but I was negative for sjogren's.

Thanks Issie, you answered it just right . I go from one extreme to the other...all over the map with this. It is very difficult to explain it, because I don't understand it all either, but I do know that when I was put on Atenolol I became extremely bradycardic, and my blood pressure bottomed out, too, and I literally felt like a slug, and I cried for no apparent reason. I still do this on occasion. I am not depressed, but even being on a new beta blocker, that is keeping my vital signs more stable, I still have this faulty Autonomic Nervous System, and still have a lot of symptoms that I don't understand...like unequal pupils, trouble talking and swallowing, stiffness, major vision issues (no explanation), and bladder spasms, abdominal pain and IBS. The Sympathetic Nervous System is what causes "Fight/Flight", Dilated pupils, tachycardia and increase in BP and bronchodilation, dizziness/vertigo/seizures, rapid breathing, poor lung perfusion, stimulates glucose release, bladder incontinence, constipation, gastroparesis, tremulousness, stiffness, adrenal surges,Anger/excitement, overstimulation, etc.. The Parasympathetic System is referred to the "Rest/Restore". Constricted pupils, Low heart rate, slow breathing, bronchoconstriction, low B/P's, trouble swallowing, breathing, increase gastric motility, Gerd, bowel spasms, IBS, bladder spasms, adrenal fatigue, blood pooling, fainting, weakness and fatigue, etc. I hope this helps! Hope it is correct, too There are alot of you tube explanations of the Peripheral Nervous System that show diagrams and are easier to understand. I'll try to find one for you...