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Not Sleeping in a horrible cycle - Feeling desperate


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Hi All,

I am new to this group and my doctor suggested that I check this website out. I just spent 5 days in the hospital and am trying to get approval from my insurance company for oxygen which my doctor said probably won't happen :( which really helped while I was in the hospital. I have spent that past 3 nights with a pain level between a 7-9 and not sleeping and pacing  my apartment I am currently trying 5 days of 500 MG Naproxen and Naratritripran 2.5mg. and daily Topiramate 100 MG. I am also on monthly Emgality 300MG pendig approval from insurance so not in it yet currently on 120 mg. My diagnosis is migraine with aura and Cluster headache. I feel so helpless lately and so sad, cannot stop crying.  It has been a really rough few weeks. I have been in this horrible cycle since January 25th and had to go on a leave from a job that I absolutely LOVE. If anyone  has a similar experience or can offer some encouragement that would be greatly appreciated. Thank you so much. 

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I'm inserting some genuine encouragement <here>. 

Wow, that is beyond nightmarish indeed about your current bout, but first, kudos to your doc for the suggestion to check us out, and second, lots of people have gotten a significant amount of control over the migraine and CH, so there is real hope you can too. For starters:

  • If you happen to be in the US, many here will go for cheap welding O2 (which is the same stuff), for an O2 affordability workaround
  • You'll notice some unlikely, but now about as long proven as you can get (while awaiting completion of large scale scale scientific studies), preventives used successfully by legions of CH'ers, and starting to be adopted by migraine folk. Namely the unlikely-seeming-at-first-glance D3 regimen and busting, which play well together. That "New Users - Please Read Here First" Blue Banner at the top of the page contains starter busting info.
  • If you're not seeing a lot of responses on this very new migraine side of the Forum, we can move, or copy your post over to the long established cluster side, especially since you unfortunately straddle both.
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As far as the oxygen and insurance goes I pay for it out of pocket and it is actually cheaper then if insurance covered it. Yes it does not help my deductible but oh well. You have the script I would start calling around and set it up as soon as you can. Tell them your paying out of pocket and work a deal up. Take what they give you, the tanks are all you will most likely get from them that will be of any use. The regulator you will buy on your own and also the mask. To hold you over you can use 5hr type energy drinks to help slow down and sometimes kill off a hit if you get it early enough. Hot water foot bath with ice pack on your cluster side of your head, Hyperventilate breathing tech, vigorous activity.  People try all kinds of things and sometimes they work and sometimes not but it gives you some hope!. Stick with it and you will find help, This site if full of helpful people that have goin through it all just like you are now. Kind of sucks but this is the place all the cool kids hang out and help each other.  Here are a few links to the O2 supplies you will want to look into getting if you do get some tanks. Also use the search bar up top and look up welding oxygen. Ask tuns of questions and someone will help. 

This regulator will work on E tanks

https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1

This one will work on the M and M60 tanks

https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1
~OR~
wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540

The mask can be found here

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

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14 hours ago, Chelsea Denehy said:

...had to go on a leave from a job that I absolutely LOVE. If anyone  has a similar experience or can offer some encouragement that would be greatly appreciated...

Hang in there. Getting correct dx is good start. I think there's a lot if anxiety w chas. Takes time to figure all this out, as well as what works individually. So - just hang in there.

Sue

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