bellgirl

Sorry...Correction to above comment. My tongue was depressed, and I couldn't lift it. I had no control of my head, neck or tongue for those maybe 10 seconds, which seemed like an eternity to me, as a child!

My tongue would spontaneously being pressed to the top of my mouth when I turned my head even when I was a child, and a headache ensued at the same time; like there was a direct line (electric like nerve pain) from the back of my head and neck, that would last for about 5 seconds and go away. My parents never thought much about it, but I am now!! Vagal nerve issues, with kyphosis even back then...hmm

Medication can be a good thing. I had to try several Beta Blockers before we found the right one for me; I went through the sluggishness, breathing problems etc., but I needed one with a longer half life, because my tachy was yo yoing. Bystolic has a 12 hour half life, so taking half in the morning and half at bedtime worked for me, but everyone is different. I only wanted to take it at bedtime, too, but then realized I was too tachy during the day, and had to take 1/2 two times a day, and now I'm rarely tachycardic anymore. Sometimes my heart rate goes a little crazy when I exercise, but I have dysautonomia after all. I can live with that... I thought it was pretty funny that all the generic names for BB end in lol...God does have a sense of humor. "Be strong and courageous. Do not be afraid or dismayed."

Have had trouble with my jaw since the beginning, during my TTT, it was my main symptom other than being dizzy. I had trigeminal neuralgia for several weeks a few months back and wouldn't wish that on a wasp!! The MOST pain I've ever experienced. Neurontin prescribed by my doctor helped with that... Have you been checked for sleep apnea? 30% of us have it, and talk with your doctor, because meds should help with rigidity....just saying

It's called Autonomic Vertigo, and my Ears, Nose and Throat doctor did a thesis on it! It's just a part of dysautonomia. It was my worst symptom before I was diagnosed. It was horrible at the time; I was vomiting and bedridden a few times, and then misjudged curbs several times, and finally went back to the doctor. I still get the little bouts you are talking about. I've learned to move slowly, with a wide base of support; it's much better and eliminates falling...Klonopin helps with dizziness and nausea, too. Talk to your doctor about it. Do you have a Autonomic Specialist taking care of you?

Yoga has been helping me stretch, and I'm less stiff. My neck and head are very rigid, and I have pain in my back, and flu like pain in my upper thighs, sometimes I used to have pain in my calves, but I thought that was due to pooling. Spinner, I don't really have pain in my joints, with the exception of old injuries, and don't have swelling. They ruled out RA. I just thing my peripheral nervous system has been wacky for so long without meds, that it started affecting my CNS!! Made everything nerve wise sensitive. The book sounds like a good idea Katybug and I'm interested in how you are changing your diet, Issie. Does anyone know of anyone with systemic scleroderma? It's also a connective tissue disorder that can affect the organs, and eventually causes sclerosis in the lungs.

I'm on two antiseizure meds, but low doses, not the amount they would really give for seizures, but my neurontin is being upped, as we speak for my fibro! I think they really help with this, but I still have episodes, where I almost fall over in choir, when I look to the side. It's a good thing I have friends to hold me up on occasion. Used to have a lot of eye issues, and still don't drive very much, only a couple of miles at night, but I believe that my supplements have really helped with that and the confusion, too. I take CoQ10, and have told all my doctors all the mito supplements I'm on, too; I was almost to the point of going to a neuro opthamologist! Now I can see so much better, and it has nothing to do with an opthamologist...I drink alot of smoothie drinks with supplements and antioxidants, too, and I eat a lot of avocados. They have 20 nutrients in them!!

Oh, Katybug; I forgot to mention that I talked with the rheumatologist about EDS, but I only have hyper extension in my elbows. The rest of me is pretty stiff. It's the Scleroderma I'm concerned about....I'm on the edge of positive for the systemic type.

I've heard that you shouldn't take Neurontin until two hours after anything with aluminum in it. So I've been slacking off the magnesium, because of it, to get all my doses in, so I don't think mine is because of magnesium. I was also on a very low dose, compared to most patients, anyway. My doctor said they are referring more to antacids though, but now I'm not sure what to do, Issie. I feel like magnesium has helped me sleep and according to my Neuro is good for my nerve health. Lot's of my symptoms mimic MS, as well. Dizzy, I love tomatoes, and I've never gotten any bad reactions to them. I love tomato sauce, too, so I'm Ok there. I can't have too many acidic juices like OJ or my bladder becomes irritable, so I have to be careful there. I just ate a salad with a whole avocado in it yesterday. Avocados have 20 nutrients in them. They are so good for you, and they are full of the good fat!! I'm post menapausal, too, Dizzy, I'm 55. Is your back pain in the middle to upper part of your back? I've had all kinds of scans and ultrasounds to no avail. I did have gastritis years ago, and that was awful; this isn't as bad as that. I have that pain in my back, no matter what!!

Thanks Dizzy...Mine all started with a virus, too. I've always had allergy issues, and do take Benadryl, and I have Pataday eye drops, and I use an inhaler, Proventil, on occasion for my asthma. I had desensitization for about 4 years for my allergies, many years ago after having my first son, for allergies for grass, ragweed and dust mites. He'll be 27 in February, so that was awhile ago. I've been watching my diet, and doing so much better with my meds and supplements, too, but when I told my ANS doctor about my flu like pains in the back of my legs, she thought I might have fibro, so after going to the rheumatologist, and being equivocal (not negative, but not positive...in limbo) with my ANA, antinuclear antibodies, and SLE-70, Scleroderma, I'm concerned, but I really didn't realize how much pain I was in, until he started me on Neurontin. I'm more functional, and I've always exercised, anyway, no matter how I felt, and he wants me to do more stretching, so I've started yoga to add to my regimen, and I believe that has helped, as well. I have to say, that since the holidays are here, I haven't been eating as well, as before. I love avocado, smoothies, bananas....all the good nutritious foods, but lately have gone off the wagon, so to speak...always thought I could have some mast cell issues, and I can't seem to gain weight. I thought my beta blocker might take care of that, but it didn't. Any ideas on how to gain weight on a diet like this?

Do you all think that Dysautonomia triggers Fibromyalgia? So now my Central Nervous System is involved with increased sensitivity. I think I'm convinced that this is definitely progressive for me. I have Pure Autonomic Failure, and hope I don't end up with Multiple Systems Atrophy. I've read the latest on Fibromyalgia, and it says that it decreases dopamine, norepinephrine, and serotonin. Well, that's no surprise to me!! I've had symptoms to verify all of these things. Does anyone have any insight on this?

I don't take clonidine either, but I have these symptoms at times, too. I think it's just your Dysautonomia.

Yes, unfortunately, we don't need an alarm...lol. We have one built in. I think it's our meds wearing off, and a combination of things. Our bodies seem to react to small stimulations in a heightened state especially when awakened, and our adrenaline kicks in. I've started to take my beta blocker in the morning and at night, half and half, and that has seemed to help, but I take klonopin at night, and I also have sleep apnea. I used to wake up in the middle of the night with tachycardia, and couldn't go back to sleep!! Many years of insomnia can get the best of you! I'm much better since I've been diagnosed and I'm on meds!!

Wean off gradually. I only drank one mug, anyway, but I drank iced tea, too, so I started with half caffeinated and half decaf; I just bought some wonderful flavored decaf coffee at Fresh Market, Pumpkin Spice, but it was expensive. Even decaf coffee has some caffeine, according to my ANS doctor, but you are messing with your nervous system by still drinking all that caffeine. It's kind of like going against what your meds are helping to calm you...Try the flavored decaf coffee, herbal tea or Constant Comment decaf...it's good!!

So happy for you

What a wonderful bit of news...you are sure intelligent enough!! My son went into debt for Physical Therapy, too, and has his doctorate, and now he has paid his loans off, accept what he owes us...lol Maybe you can find the cure!! Yes, you are certainly an inspiration and a fighter, so I know you will do well whatever you choose to do!!

Back to the D3 discussion; in order for it to work properly in your system, you have to also be on calcium citrate and magnesium oxide, because they all work together. Just saying...mine has gone up from 25 to 40 in 6 months, and I have malabsorption problems, too, at times. Tweaking your medications and having smooth muscle relaxants for your bowels can also help. Some here even take enzymes for their digestion. Don't stop trying...I'm also on a number of mitochondrial supplements, too, and I swear that has made the difference with very blurry vision I was having. I almost got to the point to go see a neuro- opthamologist for this because it was so bad, and then I decided to do more research into my MS symptoms, even though I don't have it; that's when I learned about the supplements for my symptoms. My vision is so much better. I also believe a lot of dysautonomia is caused by CCSVI, cerebral spinal venous insufficiency. There is also some research that a lot of autoimmune disorders are also caused by bacteria like lymes disease, too. Look at Rich's latest post on this. It's interesting....now I have fibromyalgia, because of this. I think that if you have dysautonomia long enough, that's what happens. It starts to invade your Central Nervous System, too, instead of just your Autonomic Nervous System! Which accounts for Parkinson like symptoms, because of low dopamine, norepinephrine and serotonin levels according to the latest research. We need a cure, not a bandaide....keep researching!! Thanks, SeattleRain about the tanning bed solution, too, for obtaining more D. I would imagine if you live there, there is very little sunshine!

Very interesting!!

I love my Schnauzer

I was going to say the same as Sue....Malabsorption How is your diet; that could be a factor, too.

This is very interesting...been reading about this also, like Angela. Diet is important, but supplements have even helped me even more. My vision has improved immensely, due to better circulation, I feel from my supplements, and probably my Cpap. This is my opinion, too...I'm not a doctor, but am interested in learning more about this...thanks, Kim

Less is always better in the meds department, but sometimes you need them Supplements help too! Glad to see you are doing better Potluck...Happy Thanksgiving!!

I started on a small dose for the trigeminal neuralgia, only 300 mg at night, and then the Rheumatologist upped my dose to 300mg twice a day for the fibromyalgia. It's amazing the difference it has made!! No side effects thus far. I've been on the increased dose since the 25th of October, but have been on it for about a month now, I'd guess.

Thanks for listening, and being supportive. I've been helping, encouraging and supporting others on some Face book sites, too, so I'm very busy with that, and have been attending bible study and getting ready for our Christmas singing for the choir, too. My son, also just recently moved, and we have been helping with that, as well, so my plate is full; but, I'm very satisfied, and thankful for all that we have together as a family. My other son, and his wife, who live in Louisiana will be here for Thanksgiving, so I need to get ready for that, as well. It's a busy time; hopefully I'll be on more after the New Year!!

Went through all this ENT testing by a wonderful Dr. Pappa Jr. in Birmingham. Make sure to go with someone to drive you, because the water test will make you dizzy. I had tests for Meniere's as well. There were 4 tests all together. My tests were negative, but something was "strange" with my results. My doctor actually diagnosed my dysautonomia, because he had done a thesis on Autonomic Vertigo. That was my main symptom at the time. I had silent migraines, and visual issues, too, which were all resolved when I started getting treatment for the tachycardia. He sent me to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham, and the rest is history. I take many supplements with my meds, and have several other diagnoses too below.