Migraine life

By duckiegirl47

Last Updated:

1 min read

My name is Colette and I'm 31 years old and have had migraines since I was 6 and chronic daily migraines for 5 years.
My whole life is dictated by my migraines- my activities have stopped, I can't work, I can't go out, or have too much fun since it will trigger a horrible migraine.
I am on disability because my migraines are so severe. My migraines are normally accompanied by an aura, light/sound/smell sensitivity, and nausea.

But now I have a new "symptom" that is extremely scary- I have spasms that cause my whole body to twitch or jerk. It starts with my head jerking back like somebody attached a string to the back of my skull and pulls suddenly. Then it advances to my whole body twitching painfully.
My doctor says it a "migraine phenomenon" and could potentially turn into seizures.
This new symptom is very concerning and adds another layer of stress to an already super stressful migraine life.
I am also a single parent to a 11 year old son who not only suffers from migraines as well but my son is a cancer survivor with 4 years in remission.
I feel like my migraines are past the point of finding an effective treatment but I hope I (and my son's doctors) can find something that can help my son's migraines.
Thank you.

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paco Member

Colette, my thoughts are with you and your son. My migraines are a result of two well fefined head injuries I was told I had 'cervical dystonia' as a result of brain damage. It causes twiching and posturing parts of the body. One time, when the meds at home couldn't stop a migraine attack I went to the ER. After pumping meds into me I sat up and wanted to pull all the needles and probes out. It all started in my cervical spine which has damage, arthritis along with other problems. I felt at the time, my neck was going to twist like a cobra and snap off. Next time, I may have to ask the hospital staff to strap a pad around my forehead to keep my sitting up and my upper body behaving as if it's possesed. I hope you and your son have a great life waiting for you.
Katie M. Golden Member

Collette, Damn you are one strong woman! I'm so sorry for what you and your son have gone through. But I'm glad you found our site and maybe we can help answer some questions. As Paco said there is a condition called Dystonia that cause involuntary muscle reactions. This article, written by someone who suffers from it herself, gives in depth on this condition and may help you talk to your doctor. And there are some treatments that may help keep it in check. Because I'm not a doctor, I can't diagnose your symptoms, so it's possible that dystonia is not the issue. There are also several medications that can cause this type of reaction, which is outlined in the article. Getting off a certain med may help. <a href='https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia' target='_blank'>http://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/</a> I hope this info helps. Let us know if we can be of further assistance! -Katie <a href='https://migraine.com' target='_blank'>Migraine.com</a> Moderator
patrick1 Member

Dear Colette, I am very sorry that you are suffering. You have all my sympathy and more! Before you give up, let me tell you what worked for me - laser acupuncture. This turned my chronic stubborn med resistant migraine around and it has a high success rate. Most people don't know about the laser. I just happened to stumble on it by chance. (My history - episodic migraines that turned into chronic and just about ruined my life. Awful. I tried all the meds, iv etc I could and nothing improved and told it was permanent. Yes, I hear your pain...) My laser acupuncture was done by a MD with qualification in laser (and needle) acupuncture. - I am in Australia. It was quick, easy, not painful. Very effective. It took a number of treatments. As for your spasms, I would see a MD first to diagnose and and laser acupuncturist MD to see if he/she could help. It could be an unrelated problem, or could be a migraine related neck issue - which was my problem with constant eye pain! The treatment that helped my eye pain was the Watson Technique in physiotherapy. Laser acupuncture is apparently safe for children too - speak with the MD. I would love to hear how you go and I wish you all the best. Sarah-Jane
vd1234 Member

Hi Colette- Obviously you are getting this checked out by your doctor- but, rest assured, Migraines do WEIRD things. I started 24 years ago with "normal" migraines- all sensory- sight, smell, touch, PAIN.... but they have gotten worse over the years and now they always have aura. And weird auras. And I had the worst one of my LIFE just a few months ago. I thought I was having a stroke. My one eye twitched for 30 minutes, my legs and arms went into extreme nerve pain... (and have gotten a little better, I think I'm getting used to it) called ataxia. It feels weird to walk... and sometimes you actually lose the use of your hand. I had all the tests, MRIs fine, blood work looked great- they were taking my blood and the nerve pain from the blood work was INTENSE- felt like my arm was being ripped off!!!.... It is JUST my head. Now, all my migraines have the eye twitching, the ataxia is worse, the auras are crazy, and I have mild hallucinations. My brain and I have a love/hate relationship.