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Hi everyone (Read 264 times)
valomilks
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Hi everyone
Dec 28th, 2017 at 9:30pm
 
Hi everyone, long-timer lurker, first time poster. Smiley

My name is Mary and I'm a 21-year-old college student from the midwest United States. I started having cluster headaches several months ago around late April, so I'm a fairly new CH sufferer. At first I wasn't sure what was wrong with me, I thought it was sinus headache or something, and I didn't have a GP so had no way of treating it. Nothing I tried seemed to work, and the campus doctors/urgent care doctors didn't seem to know what was going on. Finally was referred to a neurologist in September who diagnosed me with CH and put me on Lamictal which has done miracles for me so far.

This website has been a godsend for me in the past - just wanted to reach out and say Hello and connect with other CH suffers. CH is so demoralizing and I think it's nice to have community and support.

Hope all is well, wishing you PFDAN <3
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Hi everyone
Reply #1 - Dec 29th, 2017 at 1:05am
 
Hi and welcome Mary

Although lamictal isn't something commonly given as a preventive, other medications of the same type are used as both migraine and CH preventives. So it is great that you've something that works well for you.

Have you got any CH abortives for when your preventive doesn't work? Something like oxygen or imitrex? This means you can kill off any CH which break through avoiding you having to ride out the CH (which isn't at all fun).
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valomilks
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Re: Hi everyone
Reply #2 - Dec 29th, 2017 at 10:27pm
 
Yes, thank you! I tried two other preventives, Topamax and Verapamil ER, but I had HORRIBLE memory loss and confusion with Topamax, so I switched to Verapamil, which didn't do anything for me, unfortunately. The Lamictal has been good so far, thankfully.

I have a prescribed abortive, Imitrex in the 5mg nasal spray. I like it so far, if it doesn't get rid of my headache completely it at least makes it less painful. I haven't tried oxygen, though. I heard it gets rid of clusters the fastest but I'm not sure how to get it. Do you need a prescription?
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Hi everyone
Reply #3 - Dec 29th, 2017 at 11:33pm
 
You're not alone in having "fun" with topamax. I tried it for my migraines (I get them too) and it did great for losing weight as I forgot to eat and it turned my mind to mush.

With verapamil, how high a dose did you use? Most people need 360-480mg a day, but some go as high as 1000mg. Also some people get better results with the instant release form, whilst others do better with the SR form.

For oxygen, have a good read of - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - it has everything you need to know about oxygen other than how to get it in your country, which varies significantly. Using O2 I can abort my CHs in under 5 min using a non-rebreather mask and 25lpm flow rate.

Imitrex injections work fairly well with CH (along with the injections, but the tablet form is too slow - 20min). Do use it as soon as you feel a CH coming on as it doesn't work as well the longer you wait.

Also you can swig an energy drink, like red bull or similar with both caffeine and taurine. It can help reduce the intensity / duration of a CH.

Keep reading and you'll learn a lot.
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valomilks
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Re: Hi everyone
Reply #4 - Jan 2nd, 2018 at 2:35am
 
I didn't mind the reduced appetite, honestly. Tongue Some days I would just forget to eat, lol.

I wasn't on a very high dose, and I wasn't on it for very long either - I think my max dose was 240 mg/day. I live about an hour away from my neurologist, so I called to tell him that it wasn't working and he just switched me over to Lamictal since the Topamax worked for me (at relatively low levels). I thought he'd raise my dose but I think it was just easier for him to change my meds. (shrug)

Thank you for the link! I will be sure to ask about a prescription the next time I have a doctor's visit.  Smiley
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maz
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Re: Hi everyone
Reply #5 - Jan 26th, 2018 at 11:04am
 
Hi Mary, and welcome home.  Stick around.   You will find more knowledge here than any doctor has.  We speak from experience.
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greeneyes87
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Reply #6 - Jan 26th, 2018 at 11:38am
 
How much Lamictal does he have you on?  I am all the way up to 200mg now.  Started it last October.  Upped 25mg every 2 weeks.  It did seem to work pretty well for me I thought...still normal headaches and still stabbing pains and burning but had taken me down to about 1 attack a week..sometimes 2...as he thought SUNA not clusters.  But come December I was getting 2 a week.  I went almost 3 weeks and then got a pretty bad one.  Since I have had almost everyday with burning and stabbing pains all day.  Then on Tuesday I got hit with a whooper at work that lasted 1 1/2 hours.  So I am starting to have my doubts now...:/
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