Thanks for clearing that up. I do not want to do anything that will make me hurt worse except play with Noelle and soon Adriel. I love to hold newborn babies while they sleep.it almost gets me to sleep, but then I think what if I roll over? Jogs me right awake.
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ME, TOO!! Those little tiny people are exceedingly cuddly! I never worried about rolling over on them though. I think there’s something in our maternal instincts that would prohibit that, either that, or I just don’t sleep very soundly…
Totally agree with you - better safe than sorry in that arena for sure!! So glad you have a new baby to look forward to!! 
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I held a newborn lately and I swear it lowered my blood pressure!
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I know that’s right! Even in sleep they radiate love that goes from heart to heart
I could never get my own to sleep, but seem to be able to with other people’s! The family I support with HomeStart have 14 month old twins, & have just had another baby, they are all adorable!
I know they are adorable! I almost cannot wait for new baby, but I must make sure 3 year old still gets the attention she needs. Sometimes siblings feel a little left out and Nona can never do that to Noelle! Hope everyone is having a blessed day 
DeeG
I just went through that earlier this year w/ the same fear. Trust me when I tell you you’ll have no trouble dividing your time between them. 
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Does anyone see white spots when they cough? I’ve had very few vision problems in relation to the other problems I’ve had over the course of whatever (still undiagnosed) this is, but now when cough I see white spots for 10-20 seconds. I still have my CTA on 11/8/19 unless there is a cancellation I can slide into. I guess I can be patient a bit longer…
Hi @DeeG,
Sounds like you may be having increased intracranial pressure which could be putting pressure on your optic nerve. Is your CTA of your head/brain? Having a good neuro-optometrist or ophthalmologist check for papilledema (swelling of the optic nerve/sheath) would be a good idea if you can. This can be done easily in the office but would be worth calling ahead to see if they are versed in looking for this.
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Yes, CTA from neck up is what we discussed. I’ll follow up with opthalmologist after CTA. Thanks for the idea.
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Cbd oil/ THC, sleepytime tea
I’m willing to try CBD oil. Tried Sleepytime tea and it does nothing, same for valerian root and melatonin. Does CBD help relaxation or is it for pain? Do I’ve heard it is now in topical form… If I could just get one thing (head, neck or ear) maybe I could sleep 5-6 hours straight per night. I’m not willing to up dose of Xanax, but last six months sleep is terrible. Anxiety is too high for me to sleep well. Like someone flipped my on switch and I cannot turn it off even though I yawn all day long. A year of Tai chi didn’t help and even vacation sleep is broken. I feel relaxed, but bedtime is not really my friend.
Full spectrum CBD oil
Swoo ~
How are you doing? Haven’t heard if you’ve found the right doctor to do your surgery or if you’ve decided to put it off. It sounds from your post that CBD oil is helping w/ your pain.
I haven’t had surgery yet I met with a doctor online because I also have dysautonomia and he’s trying to figure out if I have a leak or another ICP problem. The styloids will eventually come out. Either he or samji will do it I sent him my things as well. Just trying to figure out if I have a leak too because I have CRAZY headaches and feel fluid in my head and ears all the time. The doctor has a good understanding of eagles and other vascular compression issues/ leaks/dysautonomia so once that’s ruled out or fixed I will get the styloids out. Hopefully the left first. Cbd has helped a little
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Thank you for the update!
Another question, of course… Before symptoms became almost constantly terrible or even debilitating, did anyone have times from a day to three weeks when they were so sick they could only ice head and neck for up to hour or sit with a/c on full blast to ease headache, neckache and nausea? This started being noticeable 8 years ago, but is now so awful I had to leave my daughter’s hospital room and sit in my car with a/c blowing I’m my face before I could even think of moving without vomiting. My head still hurts, but I do not feel nauseated… Much better. Yesterday was one of few times recently I thought I was going to have some sort of seizure or stroke out.
Separate comment for separate thought. Beautiful baby girl only 5 lbs 3 oz needed four heel sticks to determine if blood glucose levels was stabilizing at high enough level. Her big sister tried to step in and take Tdap for her. Baby cried from heel stick and two shots of course, but not making this up, big sister starts singing twinkle, twinkle little star and baby quickly stops crying and is sleep by the time the song is over.
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Congratulations on the baby grand-daughter! So sorry that you are feeling so bad; I was the opposite & cold made me feel much more pain, I’d spend hours with a hot water bottle on my face & neck. Never had the nausea though…
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Happy Happy Times! A new baby to love! So wonderful! Glad you have this “light” in the midst of the “darkness” of trying to get a diagnosis. Sure sounds like your vagus nerve is REALLY unhappy & there’s some vascular compression going on.
When is your next appointment?
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