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burning sensations


greeneyes87
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I have a question... when my headaches first started I was getting the pressure and pain all on my left side and my eye would be on fire and that's how I knew I was about to get hit.  I have noticed in the past week that the pain is starting more in the top of my head.  Still pain and pressure on my left side but my eye has not been as affected just in the past week but really intense burning and stabbing in the top of my head.  Is this common or has anyone else experienced this?  Just kind of confusing for me... I still have yet to see the neurologist to get an actual diagnosis-but saw my reg dr this week and he gave me imitrex but in pill form and told me to take it with naproxen. I did not notice that it made a difference at all except make me feel sleepy and numb faced.  The burning never went away... 

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Hi green,

we all experience the beast in different ways...but the nerve pathways are quite clear and unilateral...top of head....temple...eye...teeth. mine started in teeth.... and involved all of those eventually. my prince of a dentist not only REFUSED to pull what he described as perfectly good teeth...but researched and DIAGNOSED me with CH when multiple GP's couldn't. you are describing a variation on the theme...the "good" part is that you know what your "signs" are...and therefore can put into effect your well planned countermeasures! like O2, energy drinks, mayhaps verapamil, imitrex or better yet.... Zomig nasal spray, D3 regimen, trigger avoidance, busting, etc.......you'll find it all here.......

best

jon

ps...drop the naproxen...the benefits are negligible...the dangers plenty

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I'm with spiny.....the few (very few) times when I described CH to "civilians" and they sorta "got" it...was when I said: "even my hair hurts" (and I'm as bald as DJ)...............

...folks can relate to that...even if it's just a hangover..............

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I definitely get the my hair hurts.... it hurts to wear it up or even brush it some days. I sure hope that it does go away. I feel so lost and am glad I have people to help with my questions since this is the first time I have dealt with this. I really thought that maybe it would have gone away by now but I know from reading that everyone's cycles are different. My problem is I have no idea and am just praying that this is the episodic kind :(

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hair hurts?...yeah, been there...so what...it'll go away...REALLY! ...............

episodic v chronic...don worry son....both a bitch....you'll learn how to deal with either here... or ch.com...

...it's all in the attitude, planning and the right tools...............

Best

jon

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I think maybe you misunderstood what I was trying to say... someone that had responded to one of my previous posts... and it may have been batch actually thought beginning of august the cycle should have ended for me except that it has not and I was not specifically referring to the just the hair hurts going away I meant this cycle. Still waiting on the right tools.....so I am just struggling. The energy shots haven't been working as an abortive and I don't have oxygen or anything yet. The imitrex pills he finally gave me don't work either. I don't see the nuerologist until the 19th and my dr again on the 14th. 

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Have you started the D3 regimen yet? Benadryl added to it at night can help many.

Also, have you tried taking Melatonin at night 9-25mg/night? It also can help.

When I had the miserable burning, it was constant. After many months, it vanished.

I am glad that you have the Neuro appt. A bit far out, but it is there. You need to have an MRI to make sure there are no other head issues. The most common meds are a short course of Prednisone and starting Verapamil. The Pred will give you quick relief while the Verap builds up in you system. Some require very high doses of Verap to attain PF status.

He may think that you have one of the hemicrania 'look a likes'. They respond very well to indomethacin. Ch  does not. The med easily rules out CH if it works for you. 

And push for O2 if he says CH. It is the best abortive available.  It can be hard to get unfortunately.

Aaaannd, the energy shots only work if taken at the very beginning of a hit. So if you are waiting for 15 minutes to take one, it may not work. Likely won't.

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I have started the regimen. I have not tried Benadryl but the melatonin does not help me sleep. Seems like I wake up more when I take it. It seems around here getting in to a neuro is always a lengthy process. It was for my mom as well recently. I have had an MRI done and it came back clean. I did mention the indonethacin to the dr but he didn't think it would help as I don't think he thinks it is a look like. I don't feel like it would have hurt to least try... I will keep that in mind on the energy shots. I just feel like it's hard to tell sometimes when mine are going to start. Sometimes I think ok here we go and then it never does. I just hate to use them if I don't need to if that makes sense. I am not an energy drink person in general and never have been. Honestly besides tea and occasionally coffee I rarely even drink pop anymore. We did the pred with nortriptyline and I wasn't sleeping like really at all which then seemed to make it worse. Verapamil was not been mentioned to me yet. Maybe that is something the neuro will try along with hopefully some injectable imitrex or oxygen. The pills don't cut it. Takes way to long to get in my system and by that time I have been on agony for like an hour:/

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Yep, that is true on the pills. They take too darn long. Glad about the MRI.

I understand your reluctance to up your caffeine intake when you do not normally drink much of it. I use coffee for my hits, or V8 Energy. Can't take the major energy ones at all. And I am not a soda drinker either. But, you might try V8 Energy. It works for me and comes in regular V8 flavor and in a juice base as well. I have found them to be very helpful. When I get sick of the juice ones, I return to the V8 one. And it actually has some vitamins in it. Not bad actually. I have also downed a V8 Energy at about 6 or 7pm if I anticipate a hit at 8pm. Seems to head them off at the pass. I am not sure that this would work in High Cycle, but might be worth a shot. 

Pred does give some people the jitters and interfere with sleep. But when you are exhausted from nocturnal hits, this should not be a problem. However. it should only be used as a short term fix. Nortriptyline has side effects that would prevent sleep, so that would have been a double whammy on getting any sleep. I wonder why he prescribed both? It is an antidepressant. A Pred taper would likely have affected your sleep only the first day when you take the most pills. Were you on a 5 day tape of it?  I don't remember.

I would add the Benadryl, two pills (adult dose) at bedtime. It will make you sleepy. But it really does seem to help.

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