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Chiari Help?: Spine Tingling, Numbness, Vomitting
Please help me, if you can? Chiari malformation: how can I help these symptoms?
Right now: I have bad neck muscle spasms, dizziness, a severe tingling-pressure in my spine, and numbness in my legs and arms. The numbness is in my face and tongue if it is severe enough. I will choke on pure air occasionally, and not really have much warning for when I will choke, like my throat/airways decide to not work anymore. I collapse during these episodes, and if I try to walk I am likely to fall a few times until the episode ends. Sometimes I have vomiting if it is bad enough (like today and right now). These symptoms have been going on for a couple days after I had an MRI (the moment they sat me up from the MRI I could hardly walk, vomiting, all these symptoms, they said I'm fine to go since I've experienced this before)
Of course I have a headache with this, but I always have a headache. It is now over 24 hours AFTER the MRI. I also experience these symptoms when I take an overly-hot shower, if I exert myself in strenuous activity, or travel long distances in a car. I haven't felt this terrible since a car accident one year ago.
-Michelle
Right now: I have bad neck muscle spasms, dizziness, a severe tingling-pressure in my spine, and numbness in my legs and arms. The numbness is in my face and tongue if it is severe enough. I will choke on pure air occasionally, and not really have much warning for when I will choke, like my throat/airways decide to not work anymore. I collapse during these episodes, and if I try to walk I am likely to fall a few times until the episode ends. Sometimes I have vomiting if it is bad enough (like today and right now). These symptoms have been going on for a couple days after I had an MRI (the moment they sat me up from the MRI I could hardly walk, vomiting, all these symptoms, they said I'm fine to go since I've experienced this before)
Of course I have a headache with this, but I always have a headache. It is now over 24 hours AFTER the MRI. I also experience these symptoms when I take an overly-hot shower, if I exert myself in strenuous activity, or travel long distances in a car. I haven't felt this terrible since a car accident one year ago.
-Michelle
COMMUNITY LEADER
I want to warn you on wanting to feel "normal" again as many of us have new "normal's" ...your path may change in the pursuit of treatment and you need to understand that now so as not to be disappointed later.
Endometriosis is related to the EDS and MCD is also...it stands for Mast Cell Disease...basically it can cause one with it to over produce histamines and a few other issues but it can explain not only PND, but reflux due to PND and it can affect sleep.
People with EDS can also have intolerance to medications...
I am not sure what MCD is, I will google it..
Thank you for answering, I type so much...it is nice because honestly no one else is listening to me.
I have daily activities now involving doctor appointments, meditation, yoga, reading, writing each day, going out to the library, shopping, or movies with friends on good days. I was doing ballroom dancing but I stopped a month ago due to symptoms. I was in college part time but the semester ended (thankfully as my health was getting worse and now is even worse than end of semester) I am often on the phone dealing with trying to get SSI for disability. I go outside each day, watch the sunrise/sunset. I am effected greatly by heat so I go out for ten minutes at a time and then cool off and drink water inside.These are my daily activities. I rest each day with heat pads, cool packs, self-massage with lotions, do my makeup and get dressed up when I leave the house, I drink a few cups of herbal tea, cook/clean when needed, and have classical music whenever I can turn it on. Just the necessary things sometimes like showering, eating, answering calls...I am overwhelmed.
I want to get off of neurontin as I am having heat flashes and heat intolerance on this medication, and have had in the past. But it helps my depression greatly- although with passing out often I am getting depressed for obvious reasons as I just want to feel "normal" again. My dr who prescribes it is on vacation for the next seven days. When I try going off it, even slowly, I get seizure-like symptoms (yesterday my eyes blink rapidly and then stare open, and have full body convulsions for a couple of seconds, flashing lights, bad headache afterwards and exhausted. Pounding heart in head feeling.... I have trouble forming words and speaking when this happens, and then so much confusion) I think neurontin is making this worse, as I am also on Oxycodone for severe pelvic pain. They want me to get endometriosis surgery this summer as well. When I have been off all medications I have had things like hallucinations, depression, more pain. But being on all of the medication I am on doesn't seem to be a good answer either. =/
Thank you for answering, I type so much...it is nice because honestly no one else is listening to me.
I have daily activities now involving doctor appointments, meditation, yoga, reading, writing each day, going out to the library, shopping, or movies with friends on good days. I was doing ballroom dancing but I stopped a month ago due to symptoms. I was in college part time but the semester ended (thankfully as my health was getting worse and now is even worse than end of semester) I am often on the phone dealing with trying to get SSI for disability. I go outside each day, watch the sunrise/sunset. I am effected greatly by heat so I go out for ten minutes at a time and then cool off and drink water inside.These are my daily activities. I rest each day with heat pads, cool packs, self-massage with lotions, do my makeup and get dressed up when I leave the house, I drink a few cups of herbal tea, cook/clean when needed, and have classical music whenever I can turn it on. Just the necessary things sometimes like showering, eating, answering calls...I am overwhelmed.
I want to get off of neurontin as I am having heat flashes and heat intolerance on this medication, and have had in the past. But it helps my depression greatly- although with passing out often I am getting depressed for obvious reasons as I just want to feel "normal" again. My dr who prescribes it is on vacation for the next seven days. When I try going off it, even slowly, I get seizure-like symptoms (yesterday my eyes blink rapidly and then stare open, and have full body convulsions for a couple of seconds, flashing lights, bad headache afterwards and exhausted. Pounding heart in head feeling.... I have trouble forming words and speaking when this happens, and then so much confusion) I think neurontin is making this worse, as I am also on Oxycodone for severe pelvic pain. They want me to get endometriosis surgery this summer as well. When I have been off all medications I have had things like hallucinations, depression, more pain. But being on all of the medication I am on doesn't seem to be a good answer either. =/
COMMUNITY LEADER
Have you been tested for MCD? With the hives it makes me wonder.....
What are your daily activities? You may need to cut some things back a bit to help manage pain and symptoms.
COMMUNITY LEADER
I believe there are meds to help with POTS symptoms.....not having POTS myself I can not say what they might be as I am sure it is adjusted to the individual.
I will see if I can find some info for you.....but if your Drs suspects you have POTS he should be treating you for it......
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I am surprised my neurologist doesn't say much to help POTS... (he specializes in Chiari and related conditions, as I have EDS and POTS as well) I called them the last few days since the choking episodes- no call back yet and I do not trust other doctors to be of much help at all.
It seems I need to do so much research on my own. My usual regimen involves occasional massage, started with Alexander Technique, postural and breathing correction on my own throughout the day, TENS unit, heat or cold packs depending, healthy diet, yoga, herbal teas and essential oils, self-hypnosis, and medications Oxycodone, Propanolol. The propanolol helps the heart pounding and arrhythmia that I get, and calms spasming muscles. Low dose in the evening I take Lorazepam, and three times daily of Neurontin. It helps with energy a bit so I'm motivated to fight through the pain and function. Syntroid for thyroid problems (hoshimotos), and zyrtec for chronic hives...vitamin D for deficiency.
I've tried many things that do not help at all, mainly for headaches is my main symptom, but now with the full body numbness and tingling and throat closing from spasms I need to add some new things to try ASAP! Thank you. Do you have any suggestions for anything I can check out?
-Michelle
It seems I need to do so much research on my own. My usual regimen involves occasional massage, started with Alexander Technique, postural and breathing correction on my own throughout the day, TENS unit, heat or cold packs depending, healthy diet, yoga, herbal teas and essential oils, self-hypnosis, and medications Oxycodone, Propanolol. The propanolol helps the heart pounding and arrhythmia that I get, and calms spasming muscles. Low dose in the evening I take Lorazepam, and three times daily of Neurontin. It helps with energy a bit so I'm motivated to fight through the pain and function. Syntroid for thyroid problems (hoshimotos), and zyrtec for chronic hives...vitamin D for deficiency.
I've tried many things that do not help at all, mainly for headaches is my main symptom, but now with the full body numbness and tingling and throat closing from spasms I need to add some new things to try ASAP! Thank you. Do you have any suggestions for anything I can check out?
-Michelle
Yes, my chiari specialist is certain I have POTS, ironically I was too ill the day I had scheduled the tilt table test, and I could not complete the test.
Is there anything I can do about these symptoms possibly?
Is there anything I can do about these symptoms possibly?
COMMUNITY LEADER
Have they tested you for POTS? Have you had a tilt table test?
What you describe could be a related condition called POTS-https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
See if any of this fits and have a Dr test you for this, if for any reason but to rule it out.
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