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Ecaseson

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  1. Several of us have been there...still are there at times. I wish I had some great advice for getting you through this. It is so difficult to explain the level of pain to those that have never experienced this. Do you have oxygen? Even when it doesn't help me much it can calm me down a bit. Hugs
  2. Thanks to all! I am going to go over all of this with my new neuro. You are all so amazing and helpful. I wish we could all be pain free.
  3. Thank you for these links and advice. I had one ER doctor give me indomethacin ,which is good for that type of headache, without much affect. I still have it at home and will give it another go!!! Hope that you are having a good period of pain free days.
  4. Thanks to all! I have had MRI's and CT scans that don't show anything, ( good and bad right? ). I asked the doctor if these were cluster and she said possibly. She is leaving the practice for another position so I will need to find a new Neuro anyway. It is one headache, that lasts 3 days, about every 45 days. I have gone as long as 5 months without but this is rare. I do get migraines in between. I can always tell the difference because it escalates fast, I become very nervous, and the triptans I use sometimes for migraine don't affect it much at all. It can really help my migraine. I am 8 years post menopause so it is not my cycle. On one occasion it went away very quickly, I was in a car knelling in the back seat in horrid pain. I was hyperventilating and I sprayed biofreeze all over my face and breathing in the scent burned my nose but suddenly it was gone. I have tried to repeat this to no avail. On another desperate occasion I decided to breathe my oxygen for 30 minutes instead of 15. It eased up and I feel asleep. It did return but I had a few hours of peace. Let me tell you by day 2 I am hoping to leave this earth. When it is finally over I am happy to be still alive with my family but at times I want it to end so badly....... I have autonomic dysfunction so I am afraid to try the mushrooms or LSD as I can have odd and severe reactions to any medication. Scary BP drops and other things.
  5. I have had migraines since age 30. I have treated with triptans and many other preventatives etc… These are a lie in a dark room ice on my head until I recover, headache. At age 54 I started getting what my neurologist called a migraine on steroids. These would occur around every 45 days. The pain is inhumane. I cry , scream, pace through the night, I have rubbed my face so hard it has bled. My eyes and nose water. This seems like a cluster headache but it goes on for 3 days with no sudden decrease in pain, only lessening pain at times. My question is, could this be a cluster headache with a migraine running in the background?
  6. I have both migraine and cluster headache. They are very different. With migraines I want to lie in a dark room. I use ice, zofran etc...When I get a cluster headache it often triggers my migraine as well. With the cluster I pace, cry, rub my face until it bleeds, beg, plead, crawl on the floor...well you all know the drill. The migraine running in the background of my cluster makes it so that even when the severe pain subsides the migraine pain remains. This goes on for 3 or 4 days then just migraines until the next cluster hits.
  7. I get the cold nose can't stand it on the right side too. When this happens I stop up that nostril with cotton and mouth breathe.
  8. I took amerge ( a triptan ) for migraine and they helped sometimes for cluster too. As others mentioned the triptan did help but kept needing it and headaches and pain increased over time. I am down to one a month and will allow myself no more...this has decreased frequency for me. My goal is to end the use of triptans altogether. I do use O2. My regulator goes up to 15. Sometimes it helps sometimes not. I need to try with a proper mask. When I breathe I take a tylenol tension which is tylenol with caffine. If none of this works, it is nausea and unbelievable pain for 3 days. I have tried many preventatives. Hopefully you will find great tips and advice on this site.
  9. I have had botox injections, they are not the same as nerve blocks. I have autonomic dysfunction and this I believe caused a bad reaction. I couldn't swallow food..only liquids, breathing issues, severe neck pain. Was told not to get them again, however for most I think it would be worth a try. It is used for migraine as well.
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