Muscle Spasms

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Is anyone experiencing muscle spasms that can be mistaken for seizures? Also is anyone having tightness in the front of the neck? Almost looks like the neck muscles are too tight. That's a sign when I have muscle spasms. The CHIARI Specialist doesn't know if it's related to my CHIARI Malformation 1.

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  • Posted

    Hi there,

    I used to have what you had but worse..but after decompression I am pain and drug free and got my life back..

    If the specialsit does not know..you might like to print it out from any website of the side effect..or have a look on this website if you could have a read..and print it out show it to your health care professional, majority of them have not got awareness of Chiari..its only 1 in 1000 people suffer from it

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  • Posted

    Thank you for your response. How worse were your symptoms? Because mine were mistaken for Epilepsy. The Specialist thought the seizures were Epilepsy and I was having them everyday where they were lasting 5 -20 minutes. But after the Epilepsy center determined that I did not have Epilepsy, that the seizures were coming from the right side of my brain and triggering a signal on my right side. They said it's an Atypical Migraine. I don't know what to believe. Per Sutter NorthMeducal I have Chiari Malformation 1 and I was told I may or may not benighted from the surgery. I am hoping the Specialists at UCSFare right. That I just need some time for this headache to go away.

    Also, I did research on the Chiari Malformation website about symptoms and i did not find anything about these type of symptoms. I guess every person with Chiari is different. And I don't understand too why some people say it's a disease when it's not a disease. It's a defect. My doctor called it a disease and I just about wanted to walk out of his office. I had to correct him and he did not like it.

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  • Posted

    Hi Evella,

    Well, I had fainted each time I sneeze - cough - laugh (if I was able to), fast movement (from Sit to stand position) not only that was scary but it was so painful..it last only 3 - 5 minutes, but what was scared me the most I could not remember a thing only pain coming down my spine..all over throughout the body..it was really demoralising, I thought I was going to die. I got worse as the time went by, I could not walk..tinggling sensation all over my body, aching, the headache was unbelievable like giving labour..that was persistent. Keep falling over, unable to hold stuff, so no more cooking, no more making tea..as once I dropped the choping board and broke my toes...broke the dishes, I ended up resigning from my job i LOVE SO MUCH, I used to be an Executive Medical Representative, selling a mangement treatment for Cardio, Diabetes, Anti Depressent Drug, Pain Killer, cancer drugs etc..so you can see majority of my health care professional s who treated me were used to be my clients..they all knew I was then and am a very healthty human being, I do not have any disease, I just have defect it was a technical problems, they knew that...muscle spasm, cramped on all my leg.., IBS, bladder issues (I couldnt control it) I used to wear the continent panty, I felt dizzy all the time like the world was turned around..worst of all..I could not remember lots of things  (lost memory) I started getting it back..I cried and cried and prayed and prayed..I read the book of Job- I stopped being mobile..I put too much weight on..despite not eating that well, because of the non working medication...I do not even wish to my enemy to get this (I dont have enemy), I promise you IT WAS THAT BAD..I kept askng GOD to end mylife....come to think about it..how silly I was..all and all whilst waiting for the surgery.....over 1 year..I manage to study about alternative theraphy (on line) so I got diploma in Pain Releave Massage - Reflexology- Nutrition, I realised that our condition can not be managed by medication because its a technical problem we have..it need surgeon, specialist that know about this area..I read on Mayo clinic, watching youtube, talking to my Neurologist (a lot) getting 2nd opinion, I kept them informed what I was doing ante and post decompression, I am still giving them a feed back..I have my life back..my NS told me not to start jumping about and doing like what you normally do (surfing, roller coaster) just take it easy..MOVEMENT IS A MUST...DRINKING 2 LTRS OF LIQUID IS OBLIGATION...AVOIDING STRESS ALSO HELP YOU HEAL.  PLEASE get another opinion..sort this out ..print some information from this testimonies..so that they know how terrible our qulity life it is with this condition. If they have not got the time to discuss with you..sit down..compose a letter :

    1. Express how you appreciate their help.

    2. What you feel each day

    3. Attach the testimonial from others who suffer this condition

    4. Ask them - they are the only hope for you to have your life back

    5. Be assertive

    GOOD LUCK

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  • Posted

    I was diagnosed about 15 years ago and, suffered from body spasms and horrible, migraine like headaches. The neurologist I was seeing the time swore that I was having seizures. I assured her that I was not, but she was insistent. I knew I wasn't but she drugged me up regardless, in the attempt to get my spasms to stop. I no longer see her, as I had many, MANY issues with her. I still have spans, but the headaches have become far less frequent. I have neck exercises that I do to help strengthen my neck and upper back muscles....which helps quite a bit with keeping the headaches at bay. I wish the spasms would stop though. 😔

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  • Posted

    Dear Evella,

    Ashamed about your doctor ..majority of the doctors have no idea what chiari is..hence sometime they are a bit defensive..but yes..I used to get spasm before surgery ..some still got it after surgery some have not - but I have got a bad back now and then but nothing to compare prior surgery - I am drug free start to build my life back...Evella, I am going to put a book about the suffering of chiari patients would that be ok if I quote yours please, the goal is to have people like us underdtand can link with how they feel - they could also give it to their doctor..I like to print it and spread it to all the doctors in the UK

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