bellgirl

I also began with a lot of MS symptoms, with no lesions, (baffling my neuro), so I began doing research and started taking supplements recommended for MS, and my vision improved almost immediately. I knew it was a circulatory issue. I came close to going to a neuro- opthamologist, but realized with the beta blocker, my blood pressure plummeted, and my body had to get adjusted, so that I could get enough blood to my brain. I also had to try a couple to get the right one, to decrease my tachycardia. I also have kyphosis of my upper spine, so I know this is a factor with the circulation to my brain. I take CoQ10, L-Carnitine, and Alpha Lipoic acid, Vitamin D and the B complex. My vitamin D levels have improved, and so did my energy and my appetite. I drink a lot of fluid, too!! I believe you can improve with just the supplements. I also take Calcium and Magnesium. See my list below. If you have Chiari malformation, then that's a whole other issue, and even possible surgery in that case, too.

Finally, after my two weeks of intense pain with Trigeminal Neuralgia and my suggestion of Neurontin for the nerve pain, and appointment with the Rheumatologist and treatment for fibromyalgia, increasing the dose of Neurontin to just 300mg twice a day, I am so much better!!. Yes, I still have my moments of dizziness and am limited in the energy department, but if I am wise with the time I have each day, and listen to my body and don't over do, I'm almost "normal". I didn't realize I was in so much pain, and so tense, muscle wise. I'm starting a yoga class to add to my elliptical, and hopefully, that will help with my rigidity, along with all the meds!! I am very hopeful, and am living each day being thankful. Thanks guys for all the support over the last year Joy, Kim

I take half Bystolic in the morning and half in the evening....it works so much better than taking the whole 5mg. at night, which is what I used to do...your body will get adjusted to it. Just be patient. It's the best beta blocker out there in my opinion, but everyone is different

Yay!! Good for you; Live your life to the fullest!!

I absolutely love to sing. As sick as I was with dizziness and vertigo, I kept singing!! One day I was so dizzy that my friend who stands by me in choir held me up, and I've almost fallen over several times and did once, but I keep on!! Singing praise is what I live for, it lifts me up to be an encouragement and support to others. There have been times that my vision has failed too, but I continue to do it, because I know it is also therapeutic for my circulation and my lungs. I drink plenty of fluids before hand and that helps with the hypovolemia. I also do a cardio workout on the elliptical now. I started on the stationery bike, because the dizziness was so bad, but it always made me feel better, even though I was fatigued. I have never fainted, but I know what to do when I feel the urge of fainting, since I am a nurse. I've blacked out a few times, but was always able to come back after sitting with my head down or lying down. All the people in choir at church that are around me know about my condition, so I'm safe if something should occur. I believe the more you do it, the better it will get over time; the same goes for exercising, if you are put on the proper medication to help you in the process. Don't stop trying!!

You may want to talk to your dr about trying a different beta blocker. I used to have dizziness and vertigo all the time, and now with my tachycardia regulated most of the time, and klonopin for sleep, I'm so much better. Have you ever had a sleep study? You may want to consider asking about that, too!! I have a Cpap machine for my apnea. You don't need to be going through all of this. There are medications and treatments for this. I hope you start feeling better. I know how vertigo can be. It's awful to feel that way!!

When I had autoantibodies for the heart 14 years ago, my rheumatologist told me to take small dose of aspirin a day, 1 1/4 grains, and that was it. I had a positive IgM anticardiolipin antibody....just had some blood work done a week ago, when I was diagnosed with Fibro; I'll let you know if I can find out anything more when I go see the nurse practitioner today.

Glad to know you are getting answers. Prayers for treatment and getting a doctor to help you with your diagnosis.

Good news I think tweaking goes on for awhile, but I, like you, am very grateful...very seldom dizzy (except in the car), every now and then slight vertigo, no more tachy and nausea. I actually have an appetite!! It's always good to know when someone is improving with meds.

So sorry about all your issues...but now that you know, you are on the road to better health. Don't become discouraged, because once you have some meds to counter some of your symptoms, you will start feeling better. I had major vertigo/dizziness, and I'm so much better since I was put on a beta blocker and clonazapam, but even a year later, after waiting 13 for a diagnosis, they are still finding out more, tweaking some of my meds and adding a few more. It takes patience, but on a road to better days. Welcome!!

Going to a Rheumatologist would cover all your bases. I'm awaiting blood work for RA, Lupus, Scleroderma, CBC, sed rate, Urinalysis, CRP, etc. Was just diagnosed with Fibromyalgia after having Trigeminal Neuralgia. Going to a nurse practitioner for the Fibro. I had lots of bouts of pains and aches. At first I thought it was my vitamin D3 deficiency, but I am back up to 45 on that.

Watch the magnesium Katybug, because it can lower your B/P. Also valerian upset my stomach, and passion flower can cause depression nervousness, and stimulate the nervous system. Just a bit of warning.

Has she been checked for sleep apnea? 30% of patients with dysautonomia have it, so I would go to a sleep specialist. I take Clonazepam for sleep, and have a prescription for Ambien, if I really need it. I have sleep apnea, and I have improved immensely having a Cpap machine. I am more alert during the day, and I now sleep through the night. I would be up for hours every night, because of the apnea and my tachycardia, and irregular heart rhythm.

Kelly, Pure Autonomic Failure, and Multiple Systems Atrophy are progressive. You can read about them on this site...What medications are you on, if you don't mind me asking? You can PM me, if you like, and we can discuss it more. Do you have a neurologist or an Autonomic Nervous System doctor or Cardiologist? BTW, I did get a prescription for neurontin, which is what I wanted in the first place, and took one last night...it is so much more bearable. It really helps being a nurse and my PCP is the best. I even checked with my ANS doctor to get the OK on it, so things are looking up!!

Oh, I forgot to mention that I do have increased lacrimation and eye issues as well, but they never have presented themselves when I've received evaluation. I have blurred vision and also unequal pupils on occasion, too, so I always knew that my facial nerves were involved with this too, it was just a matter of time, and the invisalign aggravated my lower jaw and bottom teeth issue, as well. The good thing is that my blood work at the rheumatologist will be ready in time for my next ANS doctor visit in Birmingham, so I'm very happy about that, too!!

My dysautonomia symptoms have always included my head and neck; when I first had the virus that triggered it all, my left eye was misaligned, I had major pressure in my head, and jaw rigidity, along with right sided weakness and neuralgia...then years later started with the dizziness/vertigo 6 years after ear surgery. My teeth became loose when I found out I was very deficient in D3, so invisalign was suggested; it started with my lower teeth hurting and shifting. It's on my right side. Called the doctor and did get a prescription for neurontin, and that was OK with my ANS doctor, so I'm glad I can try that tonight, instead of the hydrocodone (Vicodin). I also was blessed to get a rheumatology appointment for Thursday, from a cancelled appointment that became available, because my ANS doctor thinks I have fibromyalgia, too. So over all today turned out a lot better than I planned...blessings from above. It helps to be a nurse, as well in all of this, too, so now I'll see how the neurontin works!! Thanks for the tip of antihistamines. They make me extremely dry, but it's worth a try.

I've had about three. The good thing is that they only last for a few minutes at the most. Two times was before my diagnosis, then the third time it was between beta blockers. My heart rate was 126 when I was at home the third time to check it. I know it is scary. I just sat down by myself in a quiet dark room and sipped on a glass of water and started praying, and then immediately called my doctor for another prescription for a beta blocker!!

Thank you all...I thought they would put me on neurontin and baclofen. I'm already on Klonopin, which is a treatment for it, anyway. I hate being on vicodin, but last night I tried without it, and woke up in excruciating pain twice, on Klonopin, so I took half a pill, but I can hardly move my mouth this morning. On the bright side, my D3 is back to normal on mega doses, but now my B12 is too high!! What's with that...it's a water soluble vitamin. I need to call the nurse back this morning, so I better get off of here and do it. Thanks again. I'll let you know how it goes.

Unfortunately, I've just been diagnosed with trigeminal neuralgia...it is extremely painful to eat, sing, talk, and I also have invisalign for my loose teeth, so this is a major problem. I went for 5 days with just naproxen, but after seeing my PCP she has put me on 3 meds, a topical NSAID, Vicodin, and Flexeril. Has anyone else had this? I just pray it goes away, because other treatments seem pretty invasive. Prayers please!! Thanks in advance for your input...

I've heard of a girl who supposedly had a slight drop but could barely walk, and it turned out once they got in there and opened her cranium, surgery in N.Y., her spine was malformed at the top and pressing into her brain with this boney prominence, so I suppose it would be a quality of life issue, but ultimately, like Issie said, you are the one to make the final decision. I'll pray that you make the correct one, and that you are satisfied with what choice you make.

They are thinking I have fibromyalgia, as well. Here is an interesting article on the combination of fibro and sleep disorders... http://www.fmcpaware.org/r-v/sleep-disorders

I have sleep apnea and very little REM sleep, and have to sleep 8-10 hours to feel rested even with a Cpap and Klonopin! I even nap on occasion, if I have overdone it.

I think anytime your Autonomic Nervous System is out of balance, you will be dizzy without meds. I started out hypertensive with dysautonomia, which is rare....roller coaster blood pressure with hills and valleys. What's normal anyway...When I was little I was hypotensive and hypoglycemic; grazing all the time to keep something in my stomach constantly to prevent feeling faint or nauseated. I don't take either of the meds you are on....

There are lots of meds for turning your brain off at night. Klonopin is actually an anticonvulsant, given for seizures, and there are a lot of medications for convulsions that can work well here. There are SSRI's that work on the serotonin of the brain, too, so there are a lot of other options. There are several types of Ambien, too; one is used to get you to fall asleep, and one is given to keep you asleep, that's extended release, Ambien CR. Better sleep leads to a more balanced Autonomic Nervous System...believe me, I went years without it, and became progressively worse, so I can relate to this better than most. Ask the doctor when you go. Too bad the klonopin didn't work for you, because it also helps with nausea, except I still have motion sickness in the car, but I take zofran for that on occasion.

He will come around...Meanwhile get a diagnosis; that helps, and once you are receiving treatment, it will help with a lot of the issues you are dealing with. I know it seems overwhelming right now, but trust me, it will get better. I like leygengs idea of your husband going with you to the doctor, so that he listens to the results of your testing, too. I couldn't drive, so my husband had to come!! Too dizzy, and had problems with vertigo, initially. Have him watch this amazing video, and he will start to understand...Changes; Living with Postural Orthostatic Tachycardia Syndrome. For some reason it is not showing up, so just look it up on you tube. It is 45 minutes long but it is worth every minute!!