Have many others had issues with nausea and vomiting in relation to you Chiari?
I’ve found that when I am tilting my head back (such as rock climbing), or turning to check for cars when switching lanes, or really any position other than having my head straight up and down, I end up getting either a headache, nauseated or a combination.
I realized that when I do get nauseous and I have to run to the bathroom to throw up that I just there gag as if something is stopping me from throwing up unless I tuck my chin in. When I do, then I can throw up.
I can definitely understand. I was spending 72 hours straight vomiting for years - every two to four weeks. I didn’t know why I was vomiting & had had another condition diagnosed around the same time & kept blaming the medicine I was taking for the thyroid condition.
However, I soon learnt that travelling, boat travel, motorcycle travel, long drives, & things like that made me very sick. I would start to alter my words, get very dizzy, get severe headaches & then vomit non stop for 72 hours. I don’t know if it was increased pressure in the skull caused by diminished CSF flow, & I just vomited until I was dehydrated enough to come right or if it was pressure to the vagus nerve. My MRI report said I had a flattened pons. So, either way decompression helped enormously, but I don’t ride a motorcycle & I couldn’t bring myself to do a boat cruise…too many sick memories associated with vomiting.
It was a whole vomiting thing that my family got really “sick” of!!
I’m new to all of this but I’ve noticed I get nauseated often now. Its like when I eat certain foods and sudden movements seem to make it worst. I don’t want to blame everything on Chiari but as I read and learn more about it this thing is life changing. I’m like you I’m nauseated but it’s more like gagging when I try and vomit…
I’m only about a year into my journey of actually being diagnosed and I still feel new. Have you attempted the whole gluten free, dairy or cutting out other various foods? I definitely agree with the different movements making symptoms worse. I too had the issues with gagging until lately I realized if I tuck my chin in or tilt my head back, then I am able to actually throw up. Which is a relief because sitting there gagging puts so much pressure on your head.
I am in the same mindset, I don’t want to blame it on Chiari either but it seems that all issues coincide with it.
For example, yesterday I was setting up my dual monitors and had to bend underneath my monitor to screw in the screws. Doing that motion made me nauseated before going to bed. Then I woke up with a slight headache which progressively got worse. Which then resulted in me throwing up at least 10 times throughout the day.
Thank you for the reply, Panino.
No, light was not a factor for the headaches, just plain old excruciating pain at the back of the head and along one side…Dr for years kept saying it was migrane, but I have never had one & no family history. Except for three occasions, since the decompression, I have not had a headache with vomiting since.
I don’t ride anymore - more that I don’t want to rather than not advised to…so, self limitation.
Yes, I found an excellent neurologist who said don’t do the decompression & two neurosurgeons who said it could work (reminder I am in Australia & our medical system is a bit more relaxed than USA) & I went with the public neurosurgeon & am glad I did. I had a text book recovery & have almost not looked back again. I am STRICT with neck & head physiotherapy & see a physio regularly. I do lots of careful stretching & strengthening exercises. Today I work three days a week, tend to my large mountain side garden (nearly alone - often using chainsaw & heavy equiment), study regularly, exercise daily & eat a healthy vegan diet. I am SO much better than I was years ago. I am grateful for the Australian health system & for the public neurosurgeon who took me on. He does about 12 chiari decompressions per year.
I think it is really interesting you mentioned the tucking the chin in - I believe this is one of the best physio exercises I have been doing - sort of a self traction to lift the head up & out from the neck. I had a laminectomy of C1, also, so I am self aware to strengthen my neck.
I feel nauseated when I bend my neck forward for too long a period such as marking exams, also if I try to work above my head and have to bend my neck back. Those seem to be no-no’s for a chiarian. I also have to be very careful with excercising. Sit-ups and any exercise that strains the neck causes nausea. The decompression op should only be done if there is no other choice. I put mine off for about 25 years but then it became vital. I am much better but 6 years on I do have to take care which all of us have to do.
That is exactly the issues I have come to find as well Flerrie! It is especially annoying since I am in school. I have found when I do end up having all of these symptoms. It also coincides with when my mental fog happens.
I am still on the part of the Chiari journey where I am trying to find a NS or NL to even consider that my Chiari is relevant. Once surgery is suggested, how would you determine if there is no other choice other than surgery?
I have done physical therapy as well as trying various meds, which I’m sure there are more meds that I could try. It seems like each thing is a very temporary band-aid if it helps at all.
I am a teacher who now teaches only 2 and half days per week. I am not involved with any sport. You need to make a note of exactly what causes you to experience nausea. Is it brought on by sports, jumps, bends or positions of neck etc. Do you experience brain fog after a late night studying/working, little sleep or after a sensory over load etc. You might have a problem after carrying heavy weights, standing to long in one place, stagger walking etc. Once you know what brings it on keep notes which you take with to your doctor. Firstly it will give him a better picture of your situation. Secondly you might need a medical certificate to free you of activities which you find brings on the nausea etc. Chiari is very sensitive to neck position and movement, working for long times with neck bent forward, driving or riding long distances etc. Stay aware to get to know your Chiari and what triggers you.
My Neuro said from the start to wait as long as possible with the operation. I waited 25 years. When I presented with extreme pressure in the upper head as well as back of head we knew we finally would have to operate.
I remain on pain preventing meds. I very seldom need pain meds. I personally am on Remeron (Mirtazerpine) to prevent headaches. It works wonderfully and I have been on it for years. I still have the normal experiences of Chiari dullness, back of head and neck tired soreness etc at times, but not the pain.
Hang in. Because the tonsils sit in such an awkward position down the cervical spine, you will most likely experience problems when you bend your neck back, move from side to side etc. We all experience different things. This is what I experience.
One interesting item my Neurosurgeon told me was that the area in which they Chiari/descended tonsils protrude is also the area of our brain in which controls gag reflex and is the center for nausea.
That is actually very interesting and helpful information, thank you very much!! One thing I remember hearing was that with Chiari is that with everything moving around the pineal gland gets pushed upon and that’s supposed to control your melatonin which might be why a lot of Chiarian’s have insomnia?
