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New Member and some questions (Read 1399 times)
Jimmyo43
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New Member and some questions
Mar 29th, 2020 at 9:27am
 
Hello everyone my names Jimmy. I am 43 and from Arkansas. I have been having cluster headaches since my late twenties. They started out light about a month and if I stayed away from alcohol they were rare even then. Now I have read alot and I am very lucky and only get them about every 3-4 years and as of now they last about 3 month and approx 3-4 a day. Three years ago was my worst cycle ever. I am 6 weeks into a cycle now that knock on wood is fairly light. After the one three years ago I was put on verapamil daily ( I have high bp and it works great for that). I use Imitrex pills as needed. I just took my first round of emgality a week ago.
  Now my questions. My cycles are usually joined with terrible muscle spasms in my entire scalp that last every minute of the cycle and actually cause as much discomfort as the cluster. I have used a hand massager to help get those muscles to relax and they are sore when you do get them to. Is this normal?
  Second I can tell when a cluster is coming because the muscles in my temple and forehead will start spasm and tight ahead of it. When I take my imitrex it takes 15-20 minutes to kick in the first thing I notice is the muscles relaxing. But they seem to feel tight all the time. It almost seems like if I stay moving it can delay an attack some days. Normal?
  Third: This attack has been strange not many at night period ( I do take benadryl at night seems to help the night ones) They are random times during the day and evening. Usually you could almost set your watch by them.The last few nights Ive almost had a light one all night but seemed like certain sleeping positions would help it but side sleeping would bring it on. Never had this happen.
  I am typing this on my phone so hopefully its legible my computer is backing up so using the phone. I have followed this forum for the last few years and used yall for info for my neuro lol. So I am very grateful for everyone here and the forum. I look forward to seeing any responses. Thank you
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Sean McE2
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Re: New Member and some questions
Reply #1 - Mar 29th, 2020 at 1:58pm
 
Hi Jimmy,  It seems all of us have different symptoms but often a lot of similarities. For you it’s scalp tightness for me it’s my neck. Some say exercise is a trigger but for me it’s a go to tool. Almost all of my cycles have a direct correlation between activity level and hits. Often any period of inactivity would trigger a hit. Lunch break at noon was to be feared. The only exception would be the nights I stayed up late for fear of going to sleep. Though I was inactive they still waited an hour after I went to bed. When in cycle I can sleep on my side but never on my left side. No no no, absolutely not Smiley. Each cycle seems a little different though but really it’s just a variation on a theme. If you’re not on the D3 regimen it is worth the effort, this is probably my 6th cycle since learning about it and each time it seems more effective than the last.   Sean
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Jimmyo43
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Re: New Member and some questions
Reply #2 - Mar 29th, 2020 at 7:29pm
 
I have started the D3 regimen. Thanks for your resonse
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Chelsea Oooo
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Re: New Member and some questions
Reply #3 - May 1st, 2020 at 10:45am
 
I am also new, and I am having a hard time navigating this site. I am 29 years old, my mother is a cluster headache sufferer, and i began getting them at 18 years old but they stopped for a long time.  I have had a headache for about 2 years straight now, but manageable/tolerable, which my mom now told me is called a "shadow" and about a week ago, while i was driving, i got my first attack in years. My PCP prescribed me fioricet and oxy, which I dont like taking since they are narcotics, and yesterday my neurologist, who formally diagnosed me as a patient with cluster headaches, prescribed me 50mg of imitrex, but i can only get 9. I have no idea how to get any relief and theyve been coming every day, and I feel like my husband (whose never seen me get an attack) thinks I am crazy. Sorry to vent, I just want to know what you guys do for any kind of relief, I am scared to take the imitrex when i get a headache since I only get 9.

By the way, sorry to take over your post, I have no idea how to start a chat or a forum topic, I am very new to this, my mother referred me to this site and I am still navigating
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jeffs
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Re: New Member and some questions
Reply #4 - May 1st, 2020 at 3:59pm
 
I am new as well to the board but not the headaches 30 + years and just suffered most of the time.  Have you tried O2 ?  I am going to pick up my bottles shortly people say this helps.  Red Bull will take the edge off if taken soon enough and I also order this tea made out of a root Kudzu not sure if it works but wiling to try anything
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MDR
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Re: New Member and some questions
Reply #5 - May 1st, 2020 at 6:29pm
 
Stay away from alcohol big trigger coffee is good to do if you chug it at the first sign of the cluster coming on and get on the Vitamin D-  regiment .

Mark.
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