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Message started by valomilks on Dec 28th, 2017 at 9:30pm

Title: Hi everyone
Post by valomilks on Dec 28th, 2017 at 9:30pm
Hi everyone, long-time lurker, first time poster.  [smiley=wave.gif]

My name is Mary and I'm a 21-year-old college student from the 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 I had no way of treating it. Nothing seemed to work, and the campus doctors/urgent care doctors didn't seem to know what was going on either. Finally I 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. It's nice to have community and support.

Hope all is well, wishing you PFDAN <3

Title: Re: Hi everyone
Post by Mike NZ on 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).

Title: Re: Hi everyone
Post by valomilks on 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?

Title: Re: Hi everyone
Post by Mike NZ on 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 - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE - 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.

Title: Re: Hi everyone
Post by valomilks on Jan 2nd, 2018 at 2:35am
I didn't mind the reduced appetite, honestly. :P 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.  :)

Title: Re: Hi everyone
Post by maz on 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.

Title: Re: Hi everyone
Post by greeneyes87 on 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...:/

Title: Re: Hi everyone
Post by valomilks on May 28th, 2018 at 4:23pm
@maz Thank you so much! The clusterhead community is wonderful - an awful community to be in, to be sure - but everyone here has been so helpful and kind. It means a lot.

@greeneyes87 That's the same dose I'm on. I've noticed that if I'm not diligent about taking it, I'll almost certainly have shadows - maybe your dose hasn't been high enough? I don't know enough about SUNA to say, I thought the main difference is that the attacks are shorter?
I'm sorry about replying so late. I haven't been checking the forums lately. I pray all is well with you, sending PF wishes your way.

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