Hellouuuu :)

Ok, don't know what is happening here, but 5 days ago I started taking magnesium supplement, (500 mg effervescent  and still am on Amitriptiline and this is my second PF day ::) have slept like a baby for two nights in a row...This last cycle has been going on for 6 weeks,( only one PF night about 2 weeks ago) I don't want to be hopeful and think that it is gone, but maybe the magnesium helped in some way? Or the amytrptilne kicked in? I do not know. As I mentioned before I tried:

Paroxetine (Paxil)
Verapamil
Topamax

My neuro put me on amitryptiline 50 mg , 2 years ago, after going through a 12 week cycle and from one day to the next the CH went away. This cycle, upped the amytriptiline to 100 mg, and no response...then tried adding the topamax, verapamil, paroxetine...but nothing.

I don't know if this is giving me a break? Is it the magensium?... Don't know but I am enjoying and LOVING every single second that I am PF.

Best wishes!!!!!!!!!

Hi Tiffany,
Not sure about this, maybe PM Batch on the magnesium
or it could be the verapamil kicking in.

Hoppy.

Magnesium was the hot item several years ago and there was a web site devoted to it--but all has disappeared. I don't see it mentioned in current medical literature.

Assuming your current med mix is at the appropriate dosage level, the failure of the commonly used meds you list for Cluster (excepting amytriptiline which is not useful) hints at an issue you doc may examine.

Print out this material and ask your doc to consider----


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Reason I mention this is that when standard Cluster meds do not work or work briefly and then stop being effective, this is sometimes is due to you having a disorder which mimics Cluster.

Hi again, maybe I should try to be a little bit more thorough with my explanations hehe :) When I was 25 I started with these aches, and they would last 4-6 weeks, usually when there would be a change of season. I went to several neurologists and they all said it was a migraine, gave me migraine meds and no help at all. Eventually it would just go away and did not reappear until about 2 years ago. 2 years ago, the same thing started to happen, basically I woke up one night and though...OH NOOOOOOOOOOOO....it can't be happening again, and it hit. Was like that for a couple of days, went to 3 diferent Neuros again, and only one said I had cluster headaches beacuse I had done research online ( I was desperate) and had started with the 02 which helped a lot during my nightly attacks. I am a heavy smoker and coffee drinkier, and even tried quitting but it made no diference. I tried to see if something was triggering those attacks but could not find a pattern. All I know is that during these cycles I can not have ONE drop of alcohol, because if I do, minutes later I am on a full blown attack.

I had a hand surgery so because of that , I had several electrocardiograms done, blood tests and everything was normal.

With the nueros I had several MRI'S and EKGs done, and nothing unusual.

Anyways, two years ago they did give me the amitriptiline and it did help. Maybe our organisms respond differently? I do not know.

This time around, I tried the topamax ( only 4 days because the side effects where TERRIBLE...I was a walking zombie, even more so with no sleep from the attacks) the verapamil 1 week ( couldn't stand the side effects either) and the Paroxetine 2 days...and side effects where aweful also. The only thing that did not make me feel worse is the amytriptilne, but even uppin the dose about 2 weeks ago, did not help, so maybe it is just kicking in?

There is always the question if one DOES have CH or not.

Here is a list of my symptoms

Usually about 1-2 hours after I go to sleep, I wake up with a burning sensation in the orbital part...on my right side. It starts getting worse in less than 4 minutes, spreads to my temple, my eyelid shuts, tears keep comming out and out, and my right nostril gets completely congested. The pain is always on the same side, it has never been on the other side, or in other places. The pain is from my orbital part, to my temple and part of my upper jaw....it gets to the point where I can not lie down, and go back to sleep. I have to either walk, move, rock, or anything but I can not be still.  bash something :/ I feel that i NEED something cold, because i start to sweat and my face gets reallllly hot. And just pray that it will be over soon.
Light does not bother me, neither does sound...but i get REALLY irritable, so I prefer to be away on my own....and from one minute to next it just goes away.


Anyways, I am new on this site

I am from Bolivia, South America. And posted on other topics concerning meds. We do not have imitrex here or any form of self injection. All sumatriptans are in pill form. And i realized that some neuros do not know much because I begged for ANYTHING to take away the pain, they have given me : ( for night attacks)because I do not get them during the day, unless I take a nap (when in cycle)
Codeine with acetaminophin, tramadol, Ketorol, but none have helped not even a bit. Just the 02, I realized that if I catch it when it is starting, I can abort this in less than 20 minutes, if not...the 02 does not help and I have to wait till it goes away.

So, about the Mimic CH, I don't think so, since I have had electrocardiograms, mri's, and other tests and nothing is unusal.

The thing is that down here in Bolivia, South America, there is very little knowledge of CH...

best wishes to all of you

Tiffany,

The answer is yes,  The magnesium supplement you're taking could very well be responsible for the cessation of your CH. Magnesium is also one of the vitamin D3 cofactors.

The following graphic illustrates a few of the 600 biochemical reactions that require magnesium...

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See your PCP or neurologist for the 25(OH)D lab test...  The odds are you're vitamin D3 deficient. 

The online survey of CH'ers using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicates, every CH'er with active CH who has gone in for the 25(OH)D lab test before starting this regimen has and their result come back below 37 ng/mL. 

Greater than 90% of them were deficient, i.e., a 25(OH)D serum concentration less than 30 ng/mL.  This survey indicates the average serum concentration reported by CH'ers before starting this regimen is 23.4 ng/mL.

You can find some additional graphics on the synergism between Vitamin D3, Vitamin A and Vitamin K2 at the following link.

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Take care and please keep us posted.

V/R, Batch

Batch, thank you :) Finally found one lab here that does that test. So will try and get it done as soon as possible and am getting ready all the thinngs I need for the D3 regime :)

You can also check our our sister site for alternatives. Sounds like the usual meds are getting you too sick.
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Hi Tiffany,
I noticed you are a heavy smoker, although it's not proven
to be a trigger, it can make the pain more intense during an
attack. Other known triggers, are.

Process foods, Cheese, Bacon, Sausage, Salami, Meats,
Pizza, and Alcohol being the biggest culprit.

Hoppy.

Hi Batch,

Yes, I am a heavy smoker...thinking about quitting or lowering the amount, tried it before while in cycle but did not see any changes. But, for other health reasons, yes...eventually I will quit.

As for drinking, I do not drink...haven't for a couple of years, two years..and precisely because I found that to be one of the triggers of my CH, (not the nightly ones)
Anyway I am doing a detox kind of diet, trying to keep off meats, grease and balancing mostly fruits, soy and avoiding the mentioned above.

After being PF two days  ( almost 7 weeks in cycle....(A GIIIIIIIIIIIIIIIIIIIIIIIIFT)

the beast struck again last night, I am still looking for patterns but can't find them...as in triggers?

Sometimes I feel like I can't take it anymore, I aborted about 4 hits with 02 and am exhausted...but I keep thinking to myself, this will go away and I am stronger.   

best wishes and thank you

Hey Tiffany,

The magnesium you're taking likely depleted what little vitamin D3 reserves of 25(OH)D you had...  Once they were gone...  the beast came back...

I suspect you'll respond rapidly as soon as you start the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

I'm not your typical CH'er... Smoking and drinking never bothered my CH one way or the other over 12 years as an episodic CH'er and 5 years as an active chronic CH'er.

I'm still chronic... All I need to do is stop taking the anti-inflammatory regimen and look who jumps ugly on me in 7 to 8 days

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Look familiar?

Take care and please keep us posted...

V/R, Batch

There are many good reasons to believe that Magnesium deficiency is a trigger for some. Just saying.

It is possible it has helped, 5 days of Mag orally likely wouldn't absorb enough to really play a huge role though. Mag goes both ways, too much or too little can cause similar results. The way your clusters behave are actually very similar to mine! Synthetic Meds do not help some as Cluster typically are a perfect storm of various conditions. Try keeping a detailed
Journal on diet, clusters, exposures, sleep that sorta thing. You will be suprised how useful in the long run that becomes. Your Seritoin levels seem like they are jacked up, Mag increases the production of Seritoin.