bellgirl

Zofran works for dizziness/vertigo. The high heart rate attributes to the dizziness, so IceLizard has some good advice there. I started on Florinef two weeks ago, and at first it was great. I actually had saliva again!! I have a lot of corneal problems, if I don't keep my eye regimen, because of dehydration, and my doctor says the infusions only last for a day. Now I've started having the headaches, which naproxen hasn't even touched. They told me to call them at about this point to let them know how I'm doing, so I will. I'm very careful with medications and was very leary of this one, because of how it works in the body. It's like a synthetic aldosterone, and it will eventually stop your body from producing any, so it's not to be taken lightly. I'll give it a few more days.

Katie, it's cortisol and aldosterone levels to test the adrenal glands...I'm on Florinef now, and it's amazing the difference it has made for me!! I believe I'm hyperadrenergenic POTS. My doctor says Pure Autonomic Failure, but I believe there is an Endocrine component here.

Prayers Sarah!! Keep us posted!! I couldn't take Mestinon, because of my hypertension, but I hope it works for you!!

Clonidine helps with adrenal surges as well. I also take a beta blocker. It was a real problem for me, as well. I'd wake up tachycardic with palpitations. I also have sleep apnea and use a Cpap. It's made a world of difference!!

Sorry you had to be admitted to the hospital,Sarah. Healing prayers!! Yes, when I look at all my friend has been through, I pale in comparison! I don't know what they checked for her thyroid problems, but she definitely has the bulging eyes. I'm surprised they didn't check her sooner, though...I hope the fluids help with your migraine!

Sorry, I meant Sarah, too!

Sorry Blue...that nothing seems to work for you, and you too, Rachel, being so young...I had them pre-menopausal, but not now. Sometimes I have headaches at the base of my skull, but I lived with headaches with high blood pressure for years, so I guess my pain threshold is high. My friend was able to get her life back, when they started doing the injections at the base of her skull and found out she was also hyperthyroid, and started treating that, and many of her symptoms improved. She also has a chiari malformation, which is why they think she is epileptic. She has a horrible binocular defect, as well, which keeps her from driving. It became worse as she became older, as well. I used to give her rides to choir when she lived in Huntsville, AL. We still correspond frequently. I talked with her this morning. She has so many issues with her diagnoses, that I believe she has dysautonomia, too, but is being treated with many of the same medications that we are, so I suppose that diagnosis isn't as important to her. She also had a bowel obstruction that lead her to surgery, probably because of the opiates she was on at the time or gastroparesis or both?!

She takes Depakote, Propanolol, and Lacticane nerve block in her neck, if the preventatives don't work...look above, for all those with migraines or seizures.

For those with migraines or seizures....I have a friend with horrible migraines. She has a seizure disorder and also has a magnetic pacer for the brain to stop the seizures, because her meds were causing her a lot of side effects and she also was on a lot of them, and they were trying to decrease the amount she took and maybe take her off some, as well. She now receives botox injections in the base of her neck for her migraines, and they are less severe and less frequent, so she is able to have a life again. She's been taken off all her seizure meds but one. She is also on a Beta Blocker for migraines, too. She goes to Dr. Kevin Cole, a neurologist in Hattiesburg, Mississippi. I believe she may be having another med injected in the base of her neck, too. I'll ask her...

Could it be blood pooling? Could it be Costochondritis? Just wondering, because some Fibromyalgia patients have this, and a bunch of us have Fibro, too...Just my scientific theories mulling around on a good brain function day!! I like your theory DeGenesis, excess sympathetic activity, because I have a lot of that going on.

Way to go Katy!!

Kitt and all above, sorry, didn't know there was another page...looks like you've already found out a lot about it. But after reading all the responses about SSRI's, and SSNI's I would warn you about the fact that the stomach is referred to as your second brain, because, actually, there is more serotonin in your gut than your brain. It helps in your digestive process, so I have stayed away from them because of it. I have a friend who is unable to eat and has pancreatic issues because she was on SSRI's. They have a lot of side affects!! I would be careful.

kitt, it gives me energy, especially in the afternoon, which can make me have some adrenaline surges, and some anxiety at times, but the benefits far outweigh the side effects. No it does not affect the serotonin levels like SSRI's, like Zoloft, and is an atypical, non-tricyclic antidepressant slowing down the reuptake of norepinephrine and dopamine, and is used for many disorders including ADHD, smoking cessation, decreased sex drive and weight problems. However, if you do have a problem with seizures, this medication is not for you!

I went to a cardiologist for a scan because of shortness of breath, that was happening way before being put on clonidine, and she said she didn't like it. When I asked her why, she said it's because it affects the CNS in older people (implying I was old); I'm 57, btw. I told her that I was put on it for adrenaline surges, and she had no other response about it. She also asked me if I had ever been treated for anorexia, because my BMI was 16.62, which is below normal slightly, in which I answered, "NO", I've always been a small person, but I had lost weight, because I was sick. She wasn't even my doctor, and I was referred to her for my test only. She had no right to ask me these questions. Yes, I had arrhythmias; so does everyone with dysautonomia/MVP. She also said there was no treatment for dysautonomia, so by this time, I was really upset. I told her that my life has improved dramatically since my Autonomic Nervous System Specialist has been treating me. I couldn't function to drive, because I was so dizzy with vertigo, and I had insomnia, too!! Then she said she had heard of the Center in Birmingham. They did a scan with my undergarment on, and did it over again because of shadowing with the same foundation. I never received a bill for this scan or my 2 doctor's visits!! She said that the scan was normal and sent the results to both doctor's that I requested. I still don't know whether the test was normal or not, because I had something in the way, or there really was a blockage. My ANS doctor told me to talk with my PCP about clonidine, when I mentioned the medication all on my own after doing my own research, to my PCP she put me on .1mg twice a day and lowered my losartan to half. My B/P was very low, so I skipped a dose and I decreased it to half twice a day, and it works very well for me. I ran into my PCP at the store and told her what I did and she was fine with it. I have Pure Autonomic Failure, but I believe I'm more Hyperadenergenic.

Thanks Kitt, I know some have tried Provigil here, but didn't like the side effects, so I never pursued that med. I can't take Mestinon, because of high blood pressure. I'm currently on several meds for that, so I'm not a good candidate. Wellbutrin XL has worked well for me. It has improved my fatigue immensely!!

I was told Provigil is given to MS patients for fatigue, but my insurance company wouldn't cover it at the time (It was $8 a pill), but now I think there is a generic form. Some have tried Mestinon, usually given to myasthenia gravis patients for weakness, but that can increase B/P, so you may not be a good candidate for that, but since it's more normalized now with the Clonidine, it may be possible. I was put on Wellbutrin XL for libido, but it ended up getting rid of some of my fatigue, but then sometimes I still over do it, and suffer the consequences. It gives me more energy. I'm able to exercise, which helps with cardiac return and makes my heart function more efficiently, (I have MVP). I had a lot of trouble with dizziness/vertigo due to the dysautonomia and tachycardia, and that has almost completely gone away, so I'm able to do more without being nauseated all the time, although I still am motion sick at times.

My PCP ordered my clonidine for me, because my ANS doctor says she doesn't do hypertensive meds, if you can't wait for your neurology appointment, Raisin. When is it? I wish my neurologist was more knowledgeable about dysautonomia. Does anyone have some good articles to share?

Healing prayers, Katybug!! I knew the Great Physician was there in the midst of your surgery...no worries. Since this one went so well, you won't have as much apprehension the second time around. He is with you wherever you go!!

You may think about having your cortisol blood levels checked. It should be the highest in the early morning, and that's the best time for a specimen to be taken. Some can tolerate Mestinon for fatigue, if you don't have high blood pressure. My doctor put me on Wellbutrin for increased libido, and that gives me much more energy in the morning and into the afternoon. I was horribly fatigued, but also had sleep apnea, so that was part of the problem with me, and I was also deficient in Vitamin D3, so I would suggest having that checked, as well.

I'm on clonidine, too, but I do have high blood pressure, but I started with a normal B/P of 90/50. I decreased my usual dose of Losartan in half, because of the Clonidine being added. Losartan is an angiotension antagonist, which reduces the amount of renin in the kidney that causes vasoconstriction of the vessels. Clonidine actually works on the alpha receptors in the vasomotor part of the brain stem, which decreases peripheral resistance, then lowers blood pressure. Look it up, because it has a plethora of uses. I only take a .1mg tablet, half tab in the am and half in the pm, because of already being on Losartan. I would talk with your doctor. Mine initially put me on two .1mg tabs a day, and my blood pressure plummeted to 76/44 so I skipped my pm dose, and ran into her the next day shopping, telling her what I did. It's trial and error. It did stop my adrenaline surges for the most part, which I'm happy about. I still tend to have them when I wake up in the morning, but it keeps them at bay at night, and that's what I was hoping for. I still have the temperature censor issues, being cold one minute and hot the next, but that's part of the dysautonomia.

A light bulb just went off for me, when you talk about your teeth chattering happening when you swallow, gjensen. I used to have a lot of trouble swallowing and felt like my food always had trouble going down my esophagus, too. That is a vasovagal response. Your vagus nerve is the largest nerve in your body going from your brain to all other organs, including your digestive tract. I bet it is connected to your teeth chattering, as well. Just a scientific theory of mine. Also clonidine helps very well with adrenaline surges and high blood pressure for those with that issue.

Bruxism is usually done in your sleep as well. Usually, you loose the enamel off of your teeth, as well. Dentists make plates to wear in your mouth at night to prevent this from happening. This is not associated only with dysautonomia either. Mine also isn't bruxism. Are you on any medication for this teeth chattering gjensen? I'm so much better on my meds!! I'm sure when you are through with Mayo, they will have a plan for you. Also find a doctor close to home who understands dysautonomia better, too!

Clenching jaws was one of my worst symptoms along with coat hanger pain, dizziness/vertigo and insomnia, when I was first diagnosed. I also have the inadvertent jaw snapping shut, too, like pink was saying, and other nerves making limbs jerk on occasion, but no teeth chattering unless I'm cold. My meds have helped with this, but it is still there. When my teeth were loose due to vitamin D3 deficiency, and I started having Invisalign to straighten them, I ended up with Trigeminal Neuralgia. That was the worst pain I've probably ever had; but since I'm on Gabapentin, it's a lot better, but still there. Hope you find a solution. Mayo is a good place to be; healing prayers!

I had droopy eye lids and didn't have it, so not necessarily. It's just a simple blood test, so I would suggest that you just add it to your other blood work.

Rheumatologists handle all autoimmune diseases other than MS. There are over 155 autoimmune diseases in all, of which Rheumatoid Arthritis is one. Your symptoms sound like Myasthenia Gravis, so I suggested getting the test done for that particular Autoimmune disease. Because it is a disorder that affects your muscles and cause them to be weak, that includes the muscles around your lungs that help you to breathe properly. I have a friend who has lowered O2 saturation, and she found out she has MG along with MS, so I thought you could even get your Neurologist to test for that. Any doctor can test you for that. My PCP tested me for it...