Migraine evolved to cough headache
I feel very worried that what I have been told is a migraine, is not a migraine.
My headache started 2.5 months ago and has never went away. No history of headaches. It started one sided, left side, near front top of head, temple and eye. After 3.5 weeks it moved to the other side of my head. Now the pain only happens when I turn my neck, cough, laugh, sneeze, move my eyebrows, move my eyes, light and sound triggered, even when I move my body parts. The pain could be at the back of my head, top, sides, forehead, or even in my neck and face. I've started getting weak on one side of my body and twitches and muscle spasms. Also body aches. Also it hurts my head to touch my head. It is day in and day out. No breaks from the pain. When I do any of the triggering things, the pain comes on, and when I remove the trigger.. the pain will usually subside within a few seconds. It is a burning and radiating pain. None of this is what I read a migraine feels or acts like.. but that is what I have been diagnosed with and I am scared. I did one MRI without contrast and all the doctors said it looks good and I dont need anymore tests.... I am really worried. Has anyone experienced this???
Hi @meganovickblakely,
The area that you are describing and the triggers you mentioned could be signs of Trigeminal neuralgia: https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Trigeminal-Neuralgia. The most complicated thing is that both trigeminal neuralgia and migraine can be triggers for each other, kind of like a chicken or the egg kind of thing.
Have you already discussed these new symptoms with your doctor? It's really important that you mention all of these symptoms so that he can decide how best to proceed, and which course of treatment would be best. Make a list of all the symptoms, and any new ones that occur between now and your consult.
Please keep in touch and let us know how you are doing. - Warmly, Donna (team member)
Hi.
I have status migraines which is all the time and, I have my heartbeat pounding in my head all the time. Do you have that? I have all the symptoms you have described, and I agree with Donna that it could be Trigeminal neuralgia. I didn't have that yet. Furthermore, I get nerve blocks in both of the nerves going up on each side of the back of the head into the brain, which really helps with the neck pain and shoulder pain and head spasms. I have TIA'S, small strokes that are on the left of my body that make it go numb from these migraines. It took a long time to diagnose me right. You have to find the right doctor. I also get Botox shots every 10 weeks now. It used to be every 12 weeks. They are a huge help. I couldn't make it without it. Just make sure to ask for what you want to be done for you. YOU are the patient and if the doctors don't seem like they are listening, get a different one, maybe a female one may be better. Also, I was told I have the start of Dementia 7 yrs. Ago, so that is not a good sign. But I don't let it get me down. My mottoes are, Be positive and have a glass of wine, try to accomplish a task every day and be kind to all on this earth, we all live here together. We are all the same, Any other questions, please send me a note.
Your Friend, Sharon
Thank you for weighing in with your experience and giving support. ~Fondly Lynne S. (Migraine.com team member)
Hi Sharon, thank you for replying and sharing this with me. I do not have my heartbeat pounding in my head, and I do not have pain all the time. The is only produced when I move my neck or head, when I cough or laugh or sing, or when I press on my head or lay it on a pillow. Or if I look at my phone screen or move my eyebrows up and down. If I dont do these things, it doesnt actually hurt... the pain only occurs with these triggers, and it will last only a short time if I remove the triggers.. no more than 5-20 seconds. And then it will fade away. It is a sharp, radiating, sometimes electrical pain. My right side is gradually growing weaker. But it can be intermittent. How long do you experience the numbness on the left side of your body? My weakness has been intermittent for the last few weeks. My fear is I have been misdisgnosed. I do not think I have trigeminal neuralgia because my pain is not mostly in my face.. very rarely. I think my symptoms match a cough headache much more than they fit migraine. Unfortunately I fear it is a secondary cough headache, because I am experiencing neurological symptoms with it, which would be a big indicator something is abnormal in my brain. I've done a lot of research and listened to expert doctors talk about different kinds of headaches and I fear this is what I have. I had 1 MRI without contrast and it didnt show anything... but typically more tests need to be done to rule everything out. I am just really worried. I know that migraines can be so different though for everyone... Thank you for sharing your experience. I am glad you found some things that help with your pain.
- Here's a link from the Cleveland Clinic - As stated, it sounds eerily similar to trigeminal neuralgia, which can be misdiagnosed as migraine disease. https://my.clevelandclinic.org/health/diseases/15671-trigeminal-neuralgia-tn Wishing you relief - Rebecca (comm advc)
I know there are so many types of migraines, and you can even have them all over your body. I have been dealing with these for 35 years. I know medication is a key to the nerve part of the brain. Furthermore, I had to try different ones and dosages to figure out what worked and adjust them. I wish you all the best in your search for the right diagnosis and treatments, and I am here to talk if you need to.
Your friend,
Sharon
