bellgirl

I've heard that amalgam fillings are supposedly poisonous to our systems because of the mercury in them, yet everyone seems to have them, and all the dentists don't seem to be stressing the importance of getting all fillings redone either but for maybe a choice few. You have a point about a dead tooth not getting the circulation it needs to combat infection. I'm also somewhat concerned with the mercury leaching into the circulation into the gums, when having this redone or possibly getting a crown. I do know that our mouths are pretty dirty places, though. They say a human bite is full of more bacteria than a dog's, believe it or not. That's why it used to be protocol for anyone with risk of endocarditis, like someone with Mitral Valve Prolapse, or other heart condition, as an example, to have prophylactic antibiotics before major dental procedures; it kind of makes you wonder about it. My dysautonomia was triggered by a virus, but I still don't know what it was. I want to be tested for EBV titers. Interesting question, but I don't know the answer either. Btw, my teeth are becoming loose because of malabsorption problems. I am taking Calcium, Magnesium and vitamin D3. I was deficient in D3, so our teeth can suffer from the dysautonomia, too, so it could be that you were ill before you had the root canal...just saying . I'm getting Invisalign to put my teeth back in place. I'll let you know how it goes. I hope I can save them. It's always better to have your own teeth. It makes eating so much easier. I wouldn't have any teeth removed, unless it was infected, and nothing else could be done. We don't get 6 sets of teeth, like the elephants

Since you are in the UK, you may have more trouble with this, as health care is run differently, than in the states. But my doctors are pretty good about doing the things that I request. I requested an MRI/MRA , because of family history of aneurysm, and I've had a lot of blood work done that I requested, too. I am a nurse, so I know that helps with the doctors. Could you try Lyrica without the biopsy? A skin biopsy may have more of an adverse reaction and pain with dysautonomia, than trying a new med, possibly. Just asking...

The alpha lipoic acid will be excreted in the urine, and does have a funny odor. I don't take them every day. What doses did you try? It could be you were taking too much. L-carnitine I usually take when my heart hurts, maybe every other or every third day 500mg/day. A lot less than the dosage recommended, and the alpha lipoic acid also only 200mg every other or third day. I did this so I could differentiate the effects of both. I take CoQ10 200mg every day....I've increased the dosage of that from the 100mg I was taking. Still experimenting some, but I will continue to take the CoQ10 and the L-carnitine for sure. Are you eating well, because that may also make a difference, too. A lot of my symptoms were MS like, so I decided to take these because they are recommended for it, and the CoQ10 is good for so many things.

Most heart doctors suggest taking CoQ10 and L-carnitine together, Rich. That may make the difference. I also take Alpha Lipoic Acid, too, and vitamin D3. I was so deficient in vitamin D, too. So it could have been the difference in D, too.

Since I have been on some mitochondrial supplements, my vision has improved. See below, and do your research. I am trying to take care of my problem at the root, starting in the cells of our bodies. I still take my medications, and exercise, too. I am a nurse, and am amazed the difference it has made in my energy level!!

Without Klonopin, I went years without sleep; I was literally up for hours in the middle of the night. I was tachycardic and had palpatations that would wake me up, and then I was so wired I couldn't go back to sleep. I have also been diagnosed with sleep apnea and Mitral Valve Prolapse which compounds the problem!! Klonopin is a God send. I only take .5mg at bedtime, and I was told by my doctor that I could take it for the rest of my life without any adverse effects. I don't have any side effects, and I don't want to take more, so I really wonder about the addictive aspect, although as a nurse, I have to admit I was reluctant to take it at first, because of that. I am wide awake at 6 or 6:30 every morning, so it doesn't leave me drowsy. It's amazing the difference it has made for me! It is also used as an anticonvulsant, as well, so the jitters and jerking I had in my sleep no longer are a problem either. Since I am a very light sleeper, it was imperative that I take something for sleep with dysautonomia, because I was slowly dying literally from lack of sleep. I don't know why benzos get such a bad rap. It also helps with dizziness, and that was my main symptom when I was diagnosed, so that was a real benefit for me.

I can't do the treadmill...but I can do the elliptical

Sounds like lack of circulation to her brain. I get blurred vision, and tunnel and blackened vision is actually near fainting, because of hypovolemia...Have her drink plenty of fluids. How is her B/P through this?

I've started taking supplements in addition to my medication, which has helped me immensely. I see, diamondcut, that you have diabetes. Alpha Lipoic acid is supposed to be really good for that...it is found naturally in the body, you can only get a small amount from food, and you can't live without it. I would suggest doing some research on it. It is a fatty acid that is naturally found in every cell of the body and it converts glucose into energy, and it has an antioxidant effect, as well. It is used for peripheral neuropathies, diabetes, MS, Alzheimers, Chronic Fatigue, heart disease, eye disorders and brain function, but since you are already taking insulin, I would check with your doctor first before taking it. Since a lot of my symptoms were MS like, I started doing research on the different supplements suggested for this, since our nervous systems are involved in our diagnosis, as well. See below, what I am taking...Mind you, that I am still on medication, too. You are always going to be fatigued when you start on a Beta blocker, change one or increase the dosage of one. Don't let that make you all give up on them entirely. I finally found the right one for me, and only now get tachycardic occasionally while exercising. I'm a lot calmer....

When I was first diagnosed I was very dizzy, but now after a year, medications and supplements, I am able to do more. I started on a stationary bike, then worked my way up to the elliptical. I do about 2-3 miles twice a week on the elliptical and walk my dog short distances every day. I'm thinking about doing yoga to help with my stiffness, too. The bands sound like a good idea for starters. It has really helped me, even when I don't feel like it, I go and feel so much better afterward. Don't give up!! It really helps to get your blood flowing properly, and I have always been a real advocate of exercising for your health.

I would insist on a full spinal xray. It's all connected...I've never had one, and always wanted to check mine for stenosis, arthritis, curvature and MS. A chest xray I had once revealed kyphosis, too. Some girls dropped me on a cement floor when I was in college (I was always the skinny one getting picked up), and my tail bone has never been the same since

Actually, with Meniere's you are supposed to remove as much salt from your diet as possible, and with dysautonomia, you are supposed to increase your salt intake. You have a conundrum....I also have to stay away from too much salt because of hypertension and fluid retention, and also am on a diuretic, which is very drying for us potsies, so I understand your conflict with medication. Do you need medication for motion sickness with this, because I take zofran and that helps...

Salt water tends to make you float better because the water is more dense Glad you are having fun at the beach!! Puppy, are you feeling better?

I am deficient in D3 and have been on massive doses for the last 5 months daily. Invisalign are plastic retainer trays that they make from molds of your teeth, to hold them in place. They hurt all the time. I tried to take calcium, but it upset my stomach. I'm on magnesium, too!! I had dysautonomia too long (13 years) without treatment, and my body is suffering the consequences. I also wasn't sleeping because of apnea, so it really took a toll on my health!! I don't think I have EDS, but could have Marfan's which is also a connective tissue disorder. I will talk with my doctor's this month, when I go back...my dentist is concerned

Wonderful, when we are able to feel more "normal" to do everyday things...very happy for you . I wondered how that medication would work for POTS. I've been on supplements to improve my energy, and they have done the same for me. Whatever works to improve our energy is super!!

There are 3 types of flus every season, so they only have a third of a chance of getting the vaccine right for the type that decides to emerge, anyway. Those odds are bad enough...I forgot to say that earlier, then there are the side effects, because any time you get something injected in your body, too, depending how your immune system is working at the time, you could be at risk. The only flu vaccine I received was back in the 70's for the Swine flu....I was in nursing school back then, and didn't know any better. It was free, and the nursing department at my university was promoting it, so I got the vaccine. I haven't had one since...I've had the flu probably a hand full of times in my life; that's once a decade. A virus did trigger my dysautonomia, so I am very careful not to be around sick people.

They didn't post my comment...don't know why...I just checked. I even have a google account. Don't know why.

After a year of getting treatment, and 13 without being sick, my teeth are shifting quickly. I know I have malabsorption problems, but I'm eating and feeling so much better on meds, supplements and exercise!! But I guess my teeth have suffered the consequences, because even my dentist is concerned. I have to get Invisalign to help keep them in place. I hope I won't loose them because of bone loss. Does any one else have this problem?

Loved swings and roller coasters...did get sick on roundy rides, though...probably will never do them again Just thought of that the other day I wasn't sick til I was older...

I am also a nurse, and I agree with you NOT to get it, (heard too many stories of getting symptoms of the flu), but sorry, I don't know of any articles

I find this really interesting re: obstructive vs central. I usually don't wake when I'm sleeping on my side - it's only on my back when I wake with a choke - so that would look like obstructive. But, like you, my neck size is smaller than the average and I don't snore, so no one hears me stop breathing. I have had the distinct feeling that my brain just forgets to send the message to breathe, but I can't explain why it seems worse when I'm on my back (unless it's a combination of central/obstructive). Also, I was sitting up at the computer one day when I tried to swallow and my throat just locked up and I couldn't breathe until I forced a cough - so I think that would indicate there is a central issue and sometimes the brain messages are just not getting through. I've always thought it is a little of both, but supposedly, that is not uncommon even with those without dyautonomia, but because of our weird unbalanced nervous systems, and I also have difficulty swallowing on occasion, I'm always thinking about this, and that is why I am very diligent wearing my Cpap. I have heard of people actually dying from sleep apnea, so I don't take any chances. It's like SIDS in infants. They don't know enough about that either; so I choose to be cautious!!

Hope is what I live for Have you had a sleep study? I had insomnia so badly, that I was tested for sleep apnea and diagnosed with it. It's amazing the difference it has made for me to have a Cpap to sleep. It's changed my life!! I was always so fatigued. I have also added supplements to help my energy level, and found out I was deficient in D3, so I've increased my dose of vitamin D, as well. All these things including my meds, and exercise all have improved my days. I still have dysautonomia, but I'm functioning better. Don't give up...We are here for you...Praying for better days.

I have to add my Cpap, It has enabled me to sleep so much better....I had very bad insomnia, too, like Sheila...

Katybug...do you have anything to help you sleep with your Cpap? I take a very small dose of Clonazepam, and it helps me sleep...I went years like you are doing, and it wore me out. I was so sick, I had to do something differently. I was barely surviving....it's amazing the difference it has made for me . Don't give up!!

Praying you will be able to swim at least one time, and feel better I love the beach, too...so sorry puppy!