bellgirl

Welcome to the site . You need a knowledgeable doctor who understands and believes dysautonomia is a real illness. Add one medication at a time, so you know what it is doing to your body; don't loose hope. Beta blockers for tachycardia are tricky. You may want to suggest one with a longer half life. It's only been about 2 years since my diagnosis, and I have to say, I'm almost "normal", but I'm depending on 6 regular medications to keep me balanced, and I'm careful with my diet. Sufilizard, I take Clonazepam for sleep. I used to have the adrenaline surges in the middle of the night, and now I sleep like a baby. I also have sleep apnea. I very rarely take an Ambien, but on occasion, I will, when needed.

This is extremely interesting! Thanks for sharing. So what is increased B12 indicate? I thought it was water soluble. Doing more research!! I stopped taking it as often, after I asked my Primary Physician for the test and had increased levels. My Neurologist never tested me for it, which surprised me. So are they saying you need a tissue sample to really know for sure? Getting my homocysteine levels checked, and a protein electrophoresis. If you are deficient in certain proteins you can have some of the symptoms we have with dysautonomia, as well, according to physician of a friend.

I've been on Wellbutrin XL 150mg. in the morning for about 6 weeks now for libido, actually, but it has helped in so many ways. There is another posting on this topic on this site, so you may want to check that out, as well. It has not changed my HR or B/P at all. She said I could increase my dose to 300mg, but I was afraid I wouldn't be able to sleep, so I thought the lower dose was enough for me. I only weigh about 103 pounds, though. I have so much more energy, so I feel more like I used to be before dysautonomia. It's great for me. One of it's contraindications is if you are prone to having seizures. It slows the reuptake of dopamine and norepinephrine, which is supposed to help POTS patients. I find I am able to do more, and think more clearly, too, plus it is helping my desire for my husband's sake. It's a real positive for me. My ANS doctor suggested it, but I've asked to try certain meds before, and my Primary Care Physician is very open to suggestions, but I am also a retired nurse, so that helps. I even had my GYN prescribe Zofran for motion sickness, so I could travel without having flares. I asked her if she knew of a medication that didn't cause drowsiness for motion sickness, and she said it is usually used for chemotherapy patients. I was even able to go on a boat!! My Nurse Practioner for my Fibromyalgia told me that he could reorder the Zofran, if I needed more. It also helps with nausea, but can cause constipation, if you are prone to it. It's good to have several doctor's who are willing to reorder as needed meds, so that you are not left without them. My PCP will order mine as well. Usually, if you have been on them before, they will reorder over the phone, unless they are a controlled substance (narcotic). One time I had a bloody urinary tract infection, and was ordered medication over the phone at 2am from my GYN. (I was doubled over in pain) We have a 24 hour CVS downtown!! I have great doctors . You should feel comfortable enough with your physician to say that you heard about this medication from some friends with this disorder and she what he/she says. I ask my doctors everything. I go into the office with a list of questions on a pad, if I have a lot of them. Sometimes they say that it's a chemistry question, and she would have to look it up....lol. So I guess I'll ask my pharmacist!! I ask some hard questions. I can't help it; I've always wanted to be a doctor

Mine was considered equivocal, which is between negative and positive?! I didn't realize there was such a result!! I also have the same result for scleroderma, too, the systemic kind, which isn't good . My Autonomic Nervous System Specialist said to keep a watch, but it could stay there, forever, so I'm hoping it does. I've got enough to contend with already. Chin up. One of our dysautonomia friends just found out she has a genetic disorder and is deficient in an important protein (Alpha 1-antitrypsin deficiency), that could leave her with COPD (Chronic Obstructive Pulmonary Disease), and liver disease, so look on the bright side; it could be worse.

I take Losartan for high blood pressure, and have been for years. It helps me...

I had a muscle spasm in my neck from yawning just recently, Carrie! My tendonitis in my arm has improved and almost gone, but if I bump the side of my arm, it flares again; which we dysautomaniacs tend to do when we run into doorways ...lol

So sorry Angela that it isn't working. Hang in there. Maybe you'll find something else that will help you. Sometimes you have to try different meds or supplements to help you. It's trial and error and some of us are more sensitive to medication. Right now my husband and I have been gluten free for a month. Although I'm not as strict on it as he is. He has Psoriasis. It seems to be helping him. Have you tried anything else for smoking? There are some new things out there for that...I'll be praying for you.

Angela, it is helping my libido, but it's still not like it used to be, but better. It is definitely helping me in the energy department, and really making a difference in my quality of life. It's been about 6 weeks now, so I'm thinking this is the full effect. I never increased my dose to 300mg, as I thought it would be too much for me. I will talk with my doctor about it when I go back in May, and let you know.

I'm glad the antibiotics are helping you, Issie, and that you are getting the feeling back in your legs!! Going to several stores at a time makes me suffer consequences, so I try to do one thing at a time, if I can. Sometimes I'll go to the pharmacy and the grocery, because they are right across the street from one another. I basically shop in that one mall that is a few minutes from my home. Today, I washed the sheets, and I will go to choir this evening. I'm only two miles from my church. Yesterday, I went to the grocery, and exercised at the YMCA with my husband. Tuesdays are always too much for me, and forgot some of my meds, and was awake most of the night, even with Ambien and Klonopin. Geez... I'll try not to do that again!! But, truly, I'm much better, too. I'm eating better, always get some form of exercise, and I almost forgot that I was "sick" one week until Saturday, when I was freezing, laid in the recliner with a blanket, and fell asleep; Tom made dinner, and I was fine after that, but that was one of those times when I overdid and suffered the consequences. I tend to do that when I'm feeling well. Just a word of warning...so I do try to pace myself, and I do much better. The Wellbutrin XL is helping in more ways than one; so I'm glad I decided to get on it; it has improved my energy level. It didn't increase my B/P or heart rate, like I thought it might, and I'm tired at night, and ready to go to sleep. So other than my vision, I'm OK, most of the time. I'll let you know how my appointment goes...

Love to watch you and Rama banter, Issie, but sorry you have little "bugs" in your system. It reminded me of that show "The Monster inside of me" that used to be on Discovery Health!! Did you see the video from U tube that Rich put on one of these threads about MS being caused by some sort of Chlamydia Bacterium?! This scientist's wife was literally an invalid, and he treated her with an antibiotic concoction of his, and she has recovered remarkably. I find all of this very interesting. I'm going to a neuro-opthamologist in May, who used to be a Neurologist. He was recommended to me by my Neurologist, because of my vision problems getting worse. I think it is circulatory, but I want to make sure I don't have any ocular aneurysms, being that they run in my family. I will let you know how it goes... I always seem to close my right eye, so I can see better...lol. You've got to keep your sense of humor!!

Thanks Lemons...that was very interesting. The Wellbutrin is helping, btw I'm not on an SSRI...

My doctor told me to drink at least 64 ounces in the winter, and when the temperature rises, drink an ounce for each degree, but if I have any more then 78 ounces, I start getting bladder spasms, so talk to your doctor to decide what is "normal" for you. As far as the salt goes, I'm like Joann, I was hypertensive, and used to watch my salt intake. Now I just listen to my body, and when I'm thirsty, I will eat some salted nuts with my fluids; if I have swelling in my ankles (fluid retention), I cut back. Some need IV's to get adequate fluid, and some have ports, so they don't have to be needled with IV's all the time, if they are really hypovolemic. So talk with your doctor to see what the best course of treatment is for you.

This is so funny And I agree with blue....I've always wanted a cabin on the beach...lol

I was on my B/P med, Losartan when taking a TTT that was positive. I wasn't on a beta blocker at the time, though, but I know what you mean about getting off a beta blocker. I had a very severe reaction, physiological panic attack, when changing beta blockers, just after 3 days. They told me to take my blood pressure medication, or I could have had a stroke, so have someone with you to drive, or like buster said, be close to the clinic in the case of an emergency!

I've blacked out twice, and almost fainted several times, usually due to heat or illness. I know what to do to keep myself from fainting, since I'm a nurse, but I'm more sypathetic and have more trouble with yo yoing high blood pressure.

I'm past menopause, so this is difficult to say, but I answered, anyway..."reaching the peak", if ever, is way different, not as satisfying, and I used to be a very sexual being. All the medication I'm on doesn't help either. Beta blockers are a real culprit. I'm actually on Wellbutrin to help with this after trying a topical agent vasodilator from a compounding pharmacy, actually. I'll let you know more after I'm on it awhile. It's only been about three weeks...

Thanks Issie...still have more energy, which is good. Breast exam was fine, but I need cortisone for my eye...whatever. The minute I put in the drops, they come right back out. I'm so teary, but I have dry eye, which is what caused this in the first place. Angela, I think the Wellbutrin is helping me all around, but not for the reason I started taking it...lol

I loved licorice even before I knew I had POTS....hum...our bodies do take care of themselves. Thanks Rama...interesting

That's a good question, since that's what I was diagnosed with by my ANS doctor, when I asked her when saw all these different subsets. I don't like the degenerative part either. I'm better with meds, and supplements and exercise, but I'm wondering how long I will last with all of this. Being realistic, having fought the good fight for almost 15 years now, only about 2 with treatment, I'm somewhat concerned with the years they put on that type of dysautonomia.. I tend to think, after doing research, that I am more hyperadrenergenic. I have high blood pressure, POTS, Orthostatic Intolerance, MVP, and am concerned about my liver with all the meds, frankly, but I depend on God daily to get me through. This week I have found out 2 more diagnosis, which are both familial, which didn't surprise me, but I have to laugh, and actually did on the phone with the nurse! I have 4 appointments alone this week...that's crazy; but the alternative is worse. My mom is 83, and has more energy than I do!!

Thanks Issie for the natural suggestions for libido. I've had other issues lately, as well, so I'm not paying much attention to the Wellbutrin side effects, but I'm finding as Angela said that I'm able to do more, because I have more energy!! Just found out I have osteopenia, which I expected, corneal ulcers on my right eye, fibrocystic disease, which I laughed at, because that is also familial, and now I have to go back for another mammogram, because of it, and an ultrasound, tomorrow, go back to the eye doctor on Wednesday, and on Thursday I have a Neurology appointment 2 hours away. I'm beginning to feel like a comedy of errors... I better have energy for all of that!!

Thanks Issie; I will look into that. I hate being on all these medications. I actually tried a topical agent at a compounding pharmacist, with some vasodilators in it, and other ingredients I looked up. Can't remember them all, and it helps some, but I don't have any desire at all, and I've never been like this. I think my beta blocker is the culprit, but I need that desperately. It's the only thing that makes my tachycardia go away most of the time. Still have wacky heart rate during exercise. I just watch it and slow down, when it happens. My heart rate can go over 200. It's really the only side effect I've had from my meds, except for this one, but I'm giving it at least a month. That's what I did with my first beta blocker, but I was the "walking dead" on atenolol. I'm much better on Nebivolol. Angela, I slept fine last night for 8 hours, so I believe when my husband sleeps well, so do I. He is suffering with tendonitis, and it wakes him and me up, when he doesn't take the aleve before bed!! Rest assured,(excuse the pun), I will gently remind him every night!

I've been on it for about 3 weeks now, and I'm feeling somewhat jittery, but I have more energy. Actually, it hasn't done anything to increase my B/P, since I was hypertensive before this. The reason I am on it is to help with my libido. But now I have bladder spasms again, so I don't think that is going to help in that department. I'm sticking with it for my husbands sake It supposedly takes about 4-5 weeks to get the full effect. I hope it gets a little better. I like increased energy, but I'm sleeping ok, since we are going to bed earlier, waking up some, but with the time change, it's hard to tell. I'm also on klonopin. I'll keep you posted!!

Aimes, you are referring to the valsalva maneuver, holding your breath, having a BM, straining in any way, actually all help your body get back in balance, especially heart rate and blood pressure. It works for awhile...as far as the fullness in your head, I've had the same, including constant tinnitis. Have you been to an ENT yet for hearing tests. They need to rule out ear issues like Meniere's, because dysautonomia can include ear issues. I had to have ear surgery to reopen my eustachian tube after a virus once. So it could be dysautonomia. I have the same thing happen with my eyes, horrible blurred vision. I may as well not have my glasses on for correction. It returns back to normal after a flare. You might also want to see a Neurologist, too, if you've never been to one for an MRI. I also have had unequal pupils before, too. I've never gone deaf, though.

See if there is a support group in your area. I've been wanting to start one, but have only found one other person in my city with it. I know there are more. We finally met, and have talked on the phone, too. I also go to a Fibromyalgia group that was already established. They have been very welcoming. Where are you living, if you don't mind me asking?

Hi Katie, I have the same, but my hands and feet are cold, too. I believe it is the dysfunction of the hypothalmus in the brain to properly regulate body temperature, as Bella just said, because of the dysautonomia. When I have my adrenaline surges, I'm warm for just a second, then back to cold again. People always tell me I have cold hands; I wear gloves, scarves, wool socks, and wool slacks, in the winter, than I'm the opposite in the summer.