My 17 year old daughter has CM1 and is having a very rough time at the moment. She has constant nausea, her lower back up to her middle back hurts all the time (she does have mild scoliosis), she is getting very light headed, constant headaches, does not sleep well due to the pain she is in....does anyone else suffer from any of these?
We have an appointment at the WI Chiari Center June 12th so trying to get through until that appointment. We have tried Arnica cream (rubbing it on her back)...she says it helps at first but within 5 minutes (give or take a few) her back is hurting again.
Just trying to figure out how to help her until her appointment. She misses so much school and has actually said to me that she wished she could be home schooled. This is a girl that was once so active and happy that she looked forward to school and sports and now she hardly even goes out with her friends anymore.
I want to take it all away from her, but I know that I can't so I have to settle with helping her anyway possible. Thanks in advance for any advice!!
Thanks so much for your response. She says her legs hurt - it feels like she just worked out. I have a call in to the doctor so we will see what they have to say. Thanks again - we will try the rice bag (which i didn't know you could put in the freezer - very interesting).
Thanks Beeba!! Appreciate all of your knowledge!! She was diagnosed almost 2 years ago, but it seems like we are always dealing with something new and different!!
You are in good hands at The WI Chiari Center. I am having my surgery there early June and I live in Oklahoma. I hope she feels better soon. I do not have nausea all the time but during my vertigo spells, getting up too fast, or just turning my head the wrong way.I also have mild scoliosis, headaches, neck and back pain. I cannot sleep with out sleep aides. I have several other symptoms. Does the back of her head hurt? So glad you found the WI chiari center. I think a lot of the battle is finding a Doctor that understands Chiari.
She does have headaches in the back of her head (typical Chiari headaches). She has also started getting stabbing pains - she says it's like someone stabbing her in the head then it radiates down the back of her head - those come and go. There are many other symptoms as well...as I'm sure is the same with you.
So glad to hear that you like the WI Chicago Center - it's always scary going to a new doctor. She currently has a NS & NL in Chicago, and we love both doctors but they don't always like to help figure out what all of her symptoms are for and blow us off a bit on some things. Again, really like both doctors and I feel both are very capable and at least somewhat understand Chiari - they just don't deal with it daily.
Good luck to you and your upcoming surgery - will keep you in our thoughts!!
Is she scheduled with Dr. Heffez in Milwaukee? That’s my new Doctor. I highly recommend your daughter watching Sydney’s video. Very inspirational and they are the same age group. I have so much respect for all chiari patients but the younger patients I def feel for. I could not imagine having to think in school while in pain. I also am a mother(she is 9) and could not imagine how hard it would be to watch your child in pain all the time. Nice to meet you for sure. My mom just joined and I think she will really like all the support and hearing other moms stories that she can relate to.
This site is such a blessing!! I want to take it all away from her and can't and that is what is so frustrating. Yes she will see Dr. Heffez in Milwaukee June 12th. Seems like so far away, but I know it will be here before we know it. I will have her watch the video, I started to watch it and then got pulled away. She has a 504 for school so that helps a bit, but she's gone so much it's difficult for her to keep up. Thanks for everything Lyanna!!
Yes I love this group. Well I am having surgery June 3 and should be cleared to go home on June 11. I will just miss you guys. Wishing you all the best. Def keep us posted.
I have had pain in my legs and my Neurologist put me on Magnesium Oxide 400mg and it has helped a great deal. My overall body aches and pains have improved. You might want to look into it.
pacmom3 I will certainly ask about the Magnesium Oxide.
Thanks so much everyone for your replies!! Took her to urgent care last night and they said she was dehydrated and a UTI...she's on a antibiotic, but I don't think that's really the cause of all of her issues since these are issues she has most everyday. But we will see - with any luck I am wrong and she will feel better once she is hydrated and gets rid of the UTI.
Thanks so much to everyone for all the suggestions. I took her to her primary care doctor on Friday and her heart rate went from 77 lying down, to 82 sitting, to 110 standing.....they did an EKG (came back normal), they are doing an Ecocardiogram on Tuesday and she has been referred to a specialist and will have a tilt table test (yet to be scheduled). We are getting somewhere!!
You totally have the right person. Her pulse was 141 about 5 minutes after a shower the other night. I will make this suggestion to her and see if that helps. We are always game for anything that helps. Sometimes she will get out of the shower and she can't even get dressed, she will have to lie on the bed and rest before she can do anything else.
Your suggestion makes sense so we will try it and I will let you know how our little experiment goes!!
Beeba said:
Am I wrong or did you post a question about your daughter and showering raising bp? I can't find it and I want to make a "for the heck of it suggestion". If I am off and I have wrong person sorry. I want to suggest not changing water temp but do the whole shower thing opposite of how we have been taught. Don't lean head back but go from the front. Lean forward the whole time - no extending to keep soap out of eyes or rinsing. Please let me know if first I have the right person and second if this changes that increase of heart rate. All very unscientific but I am wondering. I have always just done what my body says - my whole life after a shower I always had to sit for a few minutes on the side of tub. Even if I rushed through the shower because I was late I still would sit.