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Yes, I have autonomic dysfunction. Had a positive tilt table test. Passed out at 31 minutes, but my HR immediately went from 80 to 120 and stayed there . My elecrtophysiocardiologist diagnosed NCS, my own diagnosis is POTS. I can’t say whether I have EDS. One of my doctors diagnosed hyper mobility, but it isn’t severe. I can’t seem to take Z/Z and stay awake, any antihistamines knock me out for the next 3 days. I had all the typical symptoms including shortness of breath. Mayo simply said I was receiving good care and there was nothing more they could do for me that I wasn’t already doing. No skin issues either.
Hmmm, Mayo refused to take me. I don’t really have a Doctor other than my GP who has been wonderful. However, everything he knows about Dysautonomia, he learned from me. And I’ve learned from your site and dinet.org. I’ll see what I can do to get get more testing done.January 13, 2013 at 4:23 pm in reply to: Dysautonomia and our Vascular Irregularities — the video is OUT! Any questions? #3335
Thank you for all the hard work you are doing to solve this thing Dr. Diana! I am patiently waiting for the day when you release your findings. Anything I can do to help with the trials, please let me know! I’ll be a willing guinea pig too, just live too far away from you!
Oh my, Thank you for the good info. I’m hoping for that we find a way to treat CCSVI without angioplasty. We sure don’t need more problems on top of what we already deal with on a daily basis. Because some people do come out of it and have no symptoms at all, it seems dangerous to do the angioplasty! I’m waiting to see that symptom list you’ve made. 🙂 I did try Z/Z for only a couple of days. It totally wiped me out! I was not able function at all. It literally put me in bed. Perhaps I could try a child size dose to see if that would work. Even though my headaches are much better, by the end of a work day, I literally can barely hold my head up and run right to bed and fall asleep immediately. After a 20-30 minute nap, I can breathe easier and go for a while again. (I do this at lunch time too.) I have found that I can’t lift my arms up above my head or even out in front of me like when folding clothes. It really puts a kink in my neck and shoulders and gives me a headache again. Luckily I have a wonderful husband who helps out a lot at home! He’s even so kind as to work out the kinks for me. Thanks for listening and thanks for the hugs! Hugs and love to you as well. 🙂
Well, I’ve been on Diamox for a while now and it’s amazing the difference with my headaches. I had my CO2 checked at about 3-4 weeks with good results. I also purchased some PH strips and capsules for baking soda. My dosage for Diamox is leveled out now. 1/2 in the morning, 1/2 at noon, 1/2 at 4:00 and a whole tablet at bedtime. If I struggle with a headache, I check my PH and usually find it’s acidic. A couple of baking soda capsules take care of it! We haven’t gotten to the point of testing for CCSVI yet. It would mean traveling quite a distance for us.
I could have an fMRI done here, but the sono techs here probably know nothing about CCSVI. Though the Diamox helps with my headaches, I still struggle with the other symptoms of dysautonomia. The fatigue and pre syncope symptoms are the worst and I feel it’s made even worse by the electromagnetic field at work. I’m better when I can work from home. I really feel for everyone who has been struggling with this for years! I’ve only been at it for 1 year and I’m so exhausted trying to get through each day!
I’m also getting treatment for TMJ disorder. Hoping that will help too. The night guard my dentist made for me had my jaw locked up, so I’m hoping that fixing my jaw will also help with the headaches.May 27, 2012 at 2:47 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2229
I bought a simple cervical collar but felt like it cut off the blood flow in my neck even more than before. 🙁
I’m on Diamox now and experimenting with the dose. Has anyone gotten a bad migraine from forgetting to take Diamox? I did! A muscle relaxant and laying with a rolled pillow under my neck and 5 pound rice pack on my head as the only thing that helped.
Sure hoping for a cure soon!
Well, the cervical collar didn’t work for me. I already use a thin pillow that I fold under my neck for support. The cervical collar, even though it was fairly loose felt like it was cutting off the blood supply in my neck. It made it pound all the harder. I also watched your video about external communicating hydrocephalus and realized the I get worse on the days I take Florinef. I’ll be talking to my PCP about Diamox soon. My husband is downloading Part 2 as we speak. I’ll keep you posted!
I’m so glad I found you. Thank you for sharing your insight!
Thank you Dr. Diana! I do have most of the symptoms you mentioned; nausea, dizziness, sensitivity to noise/light, sometimes I get ear aches, but I know how to massage my neck to release the muscles. No tremors, but there are times when I’m very clumsy and my balance is off. I did have a a sono of my carotid artery. We weren’t looking for CCSVI at the time. I did purchase a cervical collar and I’ll be trying it out tonight. 🙂 Next step will be to talk to the doctor about trying Diamox, thank you for the information and things to look for!
Blessings to you and your family!May 8, 2012 at 12:15 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2121
I have not been diagnosed with EDS. The only EDS symptom I have is bruising easily. I have tiny vessels in my fingers pop all the time even without an obvious injury. I was diagnosed in December with POTS. I also feel that my head is too heavy for my neck, and often use my hands to hold up my head. My husband has been so good to me, massaging my shoulders, neck and back for me. Just last night I woke up with a migraine due to the tight muscles in my shoulder and neck. I took some meds, but would not have been able to get it to calm down without the skilled massage from my husband. I even commented to him that when I lay on my right side, I cannot let my left (top) arm rest in front of me because it seems to cut off my circulation and causes more neck/shoulder/headache pain. For years I’ve slept with a rather flat pillow that I fold one edge so there is support under my neck. This helps me to cope with a headache and sometimes, I even put heat on the base of my neck. My plan is to go buy a cervical collar and try that tonight. My PCP has been terrific in helping me figure out what works.
I’m on Midodrine, Mestinon, Florinef, & Low Dose Naltrexone.