Hello all, thank you for allowing me to be a part of your group.
I am just learning about CM and I would like to know more. I am still waiting to see the surgeon but my neurologist said I would have to have surgery.
I have had a constant migraine for two months some I can deal with others not so much. I get where I can't see out of my left eye and i get really bad vertigo. The last couple of days I can't seem to get enough sleep. I will be talking to my husband and just fall asleep.
Any help or advise yall have would be greatly appreciated.
I also forgot to mention I have numbness in my hands and have trouble swallowing. I also will just pass out for no reason and have bad neck and shoulder pain. thank you all
HI, I'm 17 years old with an almost 5 month old,
I go through the same thing? I'm waiting to see a rheumy on the 18th of August,
There isn't ALOT I can tell you as I don't know what it's like where you live but you can always email me if you need someone to talk too..
Hi
I to am relatively new to the group but not to CM (post op 2 years). Just listen to your own body it will let you know when its had enough.
I have learned that if I am tired I will excuse myself and lie down. Some of my friends have distanced themselves from me as I have be carrying these symptoms for several years. On the bright side true friends have stuck by me and are very supportive and understanding.
Godspeed
Hello Tysmom4ever! Have you had a recent head trauma or whiplash to bring on migraines and vertigo? I ask, because a concussion lead to my symptoms which lead to MRI and eventual Chiari diagnoses. My vertigo eased up after six months, but I still get lightheaded often and feel “floaty” when walking. Migraines are getting better with Botox after many months of insurance approvals. I take Maxalt when migraines hit. My general pain and sleep are better with low dose of Elavil at night, so I feel MUCH better day to day. I have found that light morning exercise and hydration makes me feel better that day. I rest with ice packs on my neck and back whenever I can …up to twice a day. I try to avoid my triggers which include noisy and loud situations, bright light, lifting heavy items, driving long distance, standing/sitting in one place too long. Avoiding these triggers is difficult with active husband and athletic kids (we are at some kind of tourney every weekend…driving, carrying gear, sitting/standing thru games, etc…all triggers- but need to be MOM not “sick mom” so I push thru (it can be hard since I usually feel fine during the activities, then pay the price later that day or next day - headache,tired, vibrations throughout body, neck pain and overall malaise feeling).
After ruling out that my symptoms were not caused by concussion, migraines, getting older, thyroid, etc. etc., Dr finally agrees that my ongoing symptoms are consistent with Chiari and now I am in a wait and see mode with new MRI each year and track symptoms between appts (every 3months for Botox). I will continue to balance my symptoms and how much they get in way of life with the risks of potential decompression surgery. So for now I try to do what I can and say “No” more than I like to, but has helped me temper my bad days. I’m more at peace with the acceptance of my new “normal”… I miss running, tennis, and the freedom to do whatever I want with the family…having perspective helps too… Many others have been suffering in ways I cannot imagine… Getting good sleep certainly helped me turn a corner…For me it took muscle relaxers, round of prednezone, Elavil, and massage to get over the really bad part of sleepless night and awful days. I hope you are able to figure out what works best for you and that you have more good days than bad days. Good luck!
I’m recently diagnosed myself and scared to death I get dizzy just standing there and curves freak me out feel like I’m going to fly off eyesight is getting extremely bad and the random body aches freak me out for the past few days its been my left knee its hard to walk anymore BC my hips hurt so bad waiting to see the neurosurgeon in two days glad I’m not the only one lost hope you find something that works for you girl good luck