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Lfrsweeney

Hi all... newbie here

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Not quite sure where to start other than I was finally diagnosed with CH at 57 yrs old just a few months ago.  Looking back, I probably suffered with them for at least ten years. I'm in a cycle now a doing not great. My dr. Won't return my calls.... trying to get oxygen.... my meds aren't working and I'm going through my triptans rather quickly considering they are limited. I'm new to this and have been reading some of your posts. So I'm sorry to blurt all of this out... I'm just hoping my cycle slows down soon.. 

 

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Hey. I'm from Newtown, Pennsylvania. Sorry I sounded desperate.... was just getting over an episode and well uggh. I was rather amazed reading all of the comments how many are similar to me. I had no idea there were so many of us. And yes... I'm going to need guidance... I'm desperate to get out of this cycle and am obviously not getting any help from my dr.  Ty for welcoming me..

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Hey LFR welcome to the fam, sorry you have to be here. We all understand how overwhelming CH can be, especially going undiagnosed and suffering for that long. It sounds like it’s time to find a new neuro/ headache Specialisl. I would highly recommend oxygen. There is a lot here just dedicated to that topic alone. D3 has worked for many here as well as energy shots. For me the single most helpful thing has been magic or medicinal mushrooms. It gave me my first break from CCH in over a year. My Dr is very supportive and referred me to this community. The people here are great, I can’t say enough good things. 

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Hey. I'm from Newtown, Pennsylvania. Sorry I sounded desperate.... was just getting over an episode and well uggh. I was rather amazed reading all of the comments how many are similar to me. I had no idea there were so many of us. And yes... I'm going to need guidance... I'm desperate to get out of this cycle and am obviously not getting any help from my dr.  Ty for welcoming me..

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No offense but sorry I need to be here too lol  I don't know how..but I'm glad I found this group.  I have found a new neuro guy but he cant see me until dec. I'm stuck until then. So if you or anyone can give me pointers on d3 and energy drinks I appreciate it.

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I just responded on one of your other posts. I am just a few towns over from you and think I can help you out. It took me a few months to get my oxygen delivered to my house but now I have a company that drops it off at my back door the day after I order it. I have been to a few doctors in the Delaware county and Philadelphia area and may be able to help you out with them as well. 

This all sucks but when I found this site everything seemed to just get a little better for me. Feel free to PM me and we can exchange numbers if you would like. 

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No offense but sorry I need to be here too lol  I don't know how..but I'm glad I found this group.  I have found a new neuro guy but he cant see me until dec. I'm stuck until then. So if you or anyone can give me pointers on d3 and energy drinks I appreciate it.

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1 hour ago, FunTimes said:

I just responded on one of your other posts. I am just a few towns over from you and think I can help you out. It took me a few months to get my oxygen delivered to my house but now I have a company that drops it off at my back door the day after I order it. I have been to a few doctors in the Delaware county and Philadelphia area and may be able to help you out with them as well. 

This all sucks but when I found this site everything seemed to just get a little better for me. Feel free to PM me and we can exchange numbers if you would like. 

Not quite sure how to do that.. if you can I appreciate it...

 

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Injectable triptans. Split them 3/1, or at least 2/1:  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

D3. Start ASAP.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Energy shots. Drink one at first sign of an attack.  5-Hour Energy is a place to start (easy to chug, lots of caffeine).

Check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/

Benadryl.  A lot of folks find that their CH ramps up in high pollen seasons, or from other allergies.  "Batch" (one of the great experts) recommends standard dosing of 25mg 3/day and 50mg at night.  That'll make you drowsy, but it might help your CH.

Mushrooms and other substances: Read the numbered files in the ClusterBuster Files section

Big compendium: Read Bob's Big Pocket Guide in the ClusterBuster Files section

Your currents meds.  What, specifically, are you taking, and how much?

Oxygen.  You could set up a system using welding O2 in a few days.  ~15-20% of people with CH use it.  You can't imagine the difference that O2 will make for you.

 

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I just made an appointment with my primary so I can begin d3 regimen. He's ordering blood workup for me. 

Allergies are my number 1 trigger..... so I'm on allergy meds plus benadryl at benadryl at bedtime. 

I'm taking 200 to 300 mg of topomax per day. I cant take verapamil... low blood pressure and swelling of leg and ankles. Also nortriptyline at nite increasing dosage every week till 40 mg.

Sumatriptan for attacks which I'm going thru... trying to get on O2 . Fun times was helping me with it since we're in the same area. This all new to me. Also trying to find a new supportive dr. Would help.

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There's a fairly high likelihood that your primary will be shocked by the amount of D3, and even try to talk you out of it.  S/he will be wrong about that.  You don't need to have the blood workup before starting the D3 at a basic level -- it is virtually guaranteed that your D is low, particularly by the standards required to treat CH, and starting at 10 or 20kIU/day isn't going to do you any harm in any event.  Is the triptan injectable (could be pills (worthless) or nasal spray (iffy))?

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My primary is very on board with all this but asked me to humor him with checking my levels beforehand.

My sumatriptan is in pill form and does work but since I only get 12 a month.... well.... much better to find other options. I need to read the document over.. but it isnt just D3... so I need to get a bunch of other things and see exactly how and to take this. 

I just bought a few 5 hr energy drinks. I'll see how that works. Anything is worth trying. Be nice if I could get my hands on my script today.. could have accomplished something.  I'm open to any and all suggestions.. within reason... ofc lol

I just made an appointment with my primary so I can begin d3 regimen. He's ordering blood workup for me. 

Allergies are my number 1 trigger..... so I'm on allergy meds plus benadryl at benadryl at bedtime. 

I'm taking 200 to 300 mg of topomax per day. I cant take verapamil... low blood pressure and swelling of leg and ankles. Also nortriptyline at nite increasing dosage every week till 40 mg.

Sumatriptan for attacks which I'm going thru... trying to get on O2 . Fun times was helping me with it since we're in the same area. This all new to me. Also trying to find a new supportive dr. Would help.

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