Does anyone suffer from migraine, if so do you relate it to your mast cell activity? What medications do you take for immediate relief of a migraine, especially anything  that might be in light of a mast cell condition rather than what is generally recommended for migraine? My sister has been recommended by her neurologist to take antihistamines preventatively for her severe chronic migraine, but I have had an allergist tell me that they don't work for migraine. Just interested to see what the experience is here, and grateful if anyone can shed any light on the possible mast cell connection.

Ruth

Hi Ruth!

My migraines improved a lot since I began antihistamines.  But there are days....  

I've found that when I hit in quickly with medicine that it will more often than not resolve itself quickly.  Before my masto came out of hiding and I got onto daily antihistamines I'd get these migraines for 2, 3, 4, and even 5 days and I found that once those nerves got themselves involved and irritated and even inflammed then it was a matter of putting ice packs and sleeping and constant medicating and just having to bear it out cause nothing would work.  After I got on daily antihistamines the majority of my headaches, when I'd get them, would resolve quickly.  But one of the things I noticed is that some of my headaches were tension headaches and others were I think masto related.  Those that were masto related often had this extrasensitive vision to accompany it.  I'd go out into the sunlight and "feel" that the movement of my eyes hurt and this was one of my signals that a headache was on its way.  I also noticed that when I'm doing a lot of reacting that I get this same issue, so this helped me to associate this feeling with the masto headache, whereas the tension headache was definitely muscular.   Nevertheless, the use of the antihistamines helped me to be more responsive to the pain meds.  

This showed me that regardless of the source of the headache, the mast cells were involved in it.  Since then I've learned that pain can trigger mast cells to degranulate and that degranulation of mast cells and the histamine release end up involved in the pain receptors of the neurological system.  So, you have a situation that's like a two edged knife and both sides are cutting at the same time.  So, regardless of what came first that chicken or the egg, you still have mast cell triggering involved.

So, since you're working with a child, you need to talk with your doctors about this and work up an effective means of dealing with your son's headaches.  He's also got to help you.  Since he's already on antihistamine treatment, you may not have to up his meds, but then, would it hurt to add in an extra one specifically for this purpose?  It' worth talking with your doctors about this.  Then you need to use an effective pain medication in combination right at the very first sign of the pain.  Like I said, my vision is a telltale sign for me and also the feeling of my forehead muscles hurting.  Then you should instruct your son that at the very first feeling of something not right the he takes this combination of the two meds.   And, if the pain does not improve, then about half hour later, another dose of the pain med and then if that doesn't help half hour later one more.  

However, Ruth, this has got to be doctor involved for these are instructions from doctors of how to deal with migraines in that you hit in hard and fast at the first sign, but they've got to accompany this not only because you are using a lot of over the counter pain meds, but also due to the fact that your son is a child and reacts differently and has the need of lower doses.  

Another reason you need doctor involvement is due to the types of pain medication you'd have to use.  I would never use tylenol for this kind of thing!   Tylenol is KNOWN for being toxic to the kidneys and it's also not so very effective as a pain medication.  I've never liked using it on my kids for fevers either for it's not effective as a fever reducer either.  Personally I don't like Tylenol but I know that this is one pain med that doesn't trigger us.   However, for this situation I'd not use it unless there really was no other medication I could use.   Instead I would be using either aspirin or an NSAID.  

Okay, aspirin and NSAIDs are on the NO NO list.  Lisa, how can you say to use it then?   Well, according to Dr. Luis Escribano in a talk he gave at the 2009 TMS conference and according to research done on us, only about 10% of us are really sensitive to the use of these meds.  I know that I don't react.  I've used aspirin and NSAIDs without a problem.  However, I think that the real reason we are told not to use them is not because we ARE reactive, but because there is the POTENTIAL TO BE reactive.  And that's where the danger lies for us.  And Ruth, this is why you MUST have your doctors involved in this for they need to help you find an EFFECTIVE means of helping your son when he gets one of these.  I don't think that Tylenol is as safe as they want us to believe.  It's known to kill off too many kidneys and for a child to be using that as a means to combate a migraine, it's just not effective.

Ruth, I don't know if you can get Dipirona there in Singapore, but I would check this out with your doctors.  It's really a very effective pain reliever and it doesn't seem to be as much of a trouble maker as the other NSAIDs can be.  It's been banned in the US but it's used all over the world.  We use it here in Brazil and I was IMPRESSED at how effective it was for me with my surgical pain with the open heart surgery I went through!!   I was relatively pain free following surgery, there in the ICU and while in the hospital!!!  I couldn't use any narcotics and my doctors used this inconjunction with tylenol and again, tylenol is recognized by doctors not to be that effective of a pain reliever.  It just doesn't call all the allergic reacting which is why they use it.  (I think it's also a lot of advertising too).   But this is a medication that I've learned to have a lot more faith in once I came to Brazil and saw how widely it's used here.  

So, see what your doctors can do to help your son.  I hope you can find some real answers for him !!!

Hugs!

Lisa

Thank you SO much for your replies. While I have a supportive doctor, I feel so much like I have to go it alone with a lot of these issues, until I found the support of this forum.  The medical support I am getting is so inadequate in dealing with the details of things like this.
We saw a neurologist over a year ago now, when the migraines and headaches were more frequent, he did an MRI which was clear, and told us there was nothing more to do, take paracetamol (3 or 4 times a week at that point, the doctor saw no probelm with that  ).  I was hoping he would at least prescribe one of the newer drugs (forgotten what they are, but I know they can stop a migraine in it's tracks very effectively), but no.  He did suggest Panadol extra, which my doctor disagreed with because it contains caffeine.  I know I am not unique in my experiences, of every doctor I see giving advice that conflicts with every other one, and none of them really saying anything useful, but it is SO frustrating.

So as I watched him in absolute agony last night, with the worst migriane he has had in a long time, possibly ever, I figured there has to be more I can do for immediate relief. Lisa I will look for that pain relief you mentioned, I've never heard of it.  He used to take Neurofen, and I used to take Neurofen Migraine for mine, and found it worked really well taken early enough, but I was advised not to give him ibuprofen. Maybe I should go back to that. The panadol last night just did not cut it.  But I do want to consider extra antihistamines and see if that helps - which ones specifically would you recommend? Would Benadryl be a better option for faster effect? Or liquid zyrtec?

I need to go back over the details of your replies, and go back to the articles I have about migraine. He does have classic migraine, with aura, and we are still working on him understanding the need to medicate quickly. Dehyrdation has been a problem, but I think he has improved with avoiding that and his headaches have lessened. But I do want to try to understand where histamine and mast cell activity might be playing a role.  When I can't even get the doctors to take seriously the possibility of a mast cell disorder they just look at headache and migraine and treat the symptoms in the traditional way. It's pretty scary, as many of you know, watching your child in such pain, being able to do nothing about it, and knowing first-hand how agonising that pain can be. He eventually fell asleep then slept for 13 hours, but I didn't, with those concerns you raise Josie about severe headache, and having been through my mother having a sub-arachnoid haemorrhage from a ruptured aneurysm. It's hard not to think about things like that when the pain is so severe, followed by sleep, even though it is unlikely, and he has had  that MRI which was clear.  I guess the aura gives the confidence that it is migraine not something worse.  

Much as I appreciate my doctors support, she really isn't getting down to dealing with things beyond what she already knows.  She is also inconsistent with what she says at times, so I'm not getting far in really finetuning an approach to medications with her.  I may try a different doctor at the same clinic, he called me recently with the latest blood test results and seemed pretty thorough and willing to talk through things with me, and it might be time to push for the referral to the specialist Lisa found out about for me.

Thanks again for all your support.
Ruth

Now here's a bit of the back story to this migraine.  You might know I have had my son on a low histamine diet for months now, but at times we both lose our resolve and get a bit slack on it, especially when a doctor puts doubt  in our minds. The recent consult with the dermatologist did more harm than good really, mainly in undermining Cameron's confidence in what I am saying. At his advice we tried a month of antihistamines, just zyrtec daily, which we had never done before as a preventative rather than symptom relief. But at the end of the month, when his skin and headaches have been really good for several months now, my doctor said he should go off them if he was stable, and Cameron wanted to go off them, and at the same time eased up on the low histamine diet. I gave in, my resolve weakened, but I also felt it might be time he saw for himself the difference the diet and medications make. Within about 10 days his skin had flared (all over itching and rashes, mostly face and upper body), bad enough that he started himself on the zyrtec again on Friday, forgot to take one on Sunday, then had this migraine on Sunday afternoon.  He had also eaten a lot more histamine foods in recent days.

Lisa your explanation about your headache patterns makes sense, and fits with what I have read again about migraine, that there is a bit of a self-perpetuating loop with the pain and whatever is triggering the migraine, and the mast cells reacting.  Chicken and egg, but the bottom line is histamine can be invovled and antihistamines can help. I am not sure what to think about NSAIDs now, they are what is recommended for migraine. Is the concern with them about anaphylaxis, or are there other consequences to be wary of in high risk people?  

The other bit of the story from this episode is that when the migraine started we had visitors so Cameron took a tablet, followed by another  half an hour or so later when the first wasn't helping. Once I realised what was going on he told me he had taken them, but I assumed it was panadol (paracetamol, same as tylenol I think)  because that's what he has been taking lately. It was only today when we talked about it that I found out it was actually Neurofen (ibuprofen, same as Advil I think). His headache got a lot worse before it got better - just the natural course of it, or did the neurofen actually add to his problems before it helped?  

Thanks Kim for the ideas about medications, I will think about the benadryl idea, or a fast acting antihistamine like zyrtec drops, and maybe the ibuprofen for when he has a migraine, but not as a regular option for the more everyday headaches.  He has never taken benadryl before, so I'm thinking we should be trying it out sometime, but not when he's in a full-blown migraine?  Maybe when his skin is really bothering him, which it is at the moment, so that we can see how he responds to it.

So for now we go back to low histamine diet, zyrtec daily, until we see a doctor to go over it again - just bracing myself for another round.  I would like to add zantac, but I think I will talk to a doctor about it.  Thanks again for the advice and ideas, any more gratefully received!
Ruth

Thanks Heather. I hated letting him learn the hard way, especially where health is concerned, but sometimes teenagers will only learn that way.  And without a diagnosis it is hard to insist that this is without a doubt the way he has to go.   However this experience has convinced him.

He has had severe bruising in the past, so I am wary of the NSAIDs, on the other hand if he hasn't had an allergic reaction then maybe occasionally it's OK for the severe migraines, which aren't very frequent at the moment.

Whoa there Josie, Hold on there girl!!   You're getting a bit carried away!!!     You're going to really get Ruth all worried!!!


Ruth, the vast majority of migraine's are tension and stress related and by addressing these issues, you can relax some of that vigil.  when Josie mentioned the prostaglandins, they are a very valid point especially is your son is a masto patient.  This means that the majority of his issues are mast cell mediator related and migraines are indeed a RECOGNIZED SYMPTOM of masto, like syncope is and anaphylaxis is and diarrhea is.  If the basic tests have been performed on your son and he's not showing any major issues, then don't worry about many of these other things which can cause a migraine.  You see, many of these things that Josie has mentioned are short term situations and usually create such intense pain that the doctors run after this and find it.  You don't need to go out talkinga bout intercranial pressure and aneurysms, etc. yet.  Those are often medical emergencies and they are what are called acute situations - strong and short termed and recently occurring.  If you son has a history of migraines then these other things, even tumors, can be discarded if he's done the basic scans and tests.   So, don't get worried about many of these things Josie covered.  She's right, they could be worth a consideration, but most of these situations have OTHER SYMPTOMS involved with them that helps the doctor make a diagnosis.  Remember, they rule out the most common things that line up with the symptomatology so if they've not gone doing spinal taps any time recently, that's because there is something lacking for them to think this.

Besides, again, if your son is working with a mast cell disorder, then this is part of the ballgame and the great likelihood is that this is the cause for the migraines.  

So, since the major things have been taken care of, this seems to make sense, but that doesn't mean it's easy to resolve nor to live with and this is what you've got to do is find answers for your son.  

This is worth having your doctors speak with a masto expert, but it's likely, Ruth, that they won't do this until after they've pinned down his disease.   So, you have to work with your doctors to find some means of dealing with this effectively.  They have got to have something that is more effective, Ruth!!  And I do think that Kim's got some great suggestions worth considering, especially since Brie is in this same boat as your son is, Ruth.

I hope this helps!!!

Lisa

Josie,

I wasn't questioning what you know.  I know you've got lots of years of nursing and I don't question a lot of what you say.  My only reason for stepping is what that much of it didn't seem so necessary in that apparently Ruth's son has been working with migraines as a long time situation and most of what you were suggesting would be indicated for an acute situation, so in this sense, not necessary.  And for many patients, when you start talking about lumbar punctures this get really scary and perhaps it just wasn't needed for this case.  

Although we patients know that many of these things are possibilities, we try to not to go off into the more extreme situations since most of these things really aren't ours to have to raise to the doctors.  I think that if Ruth's son had been showing any real need for some of these procedures, he would have had other symptoms or exams showing the need for it and his doctors would have jumped on it already.  When we patients mention these kinds of things to doctors, they begin getting suspicious and wonder where we heard of them for this is something that someone like you who had to work with this often enough would come up with.  For the rest of us they look at us and say, Munchausens?   This is the fine line that many of us have to walk in that we not only don't want to get ourselves scared silly, but we have to be careful as to how we speak with our doctors, especially if they are not familiar with us.  It's all to easy for them to look at us like something is wrong and with all the notice that Munchausens by Proxy cases get today, it would be way to easy for Ruth's doctors to consider this if they keep coming up empty handed.  

I know you mean well, Josie and I wasn't calling your attention on this.  I was only trying to help ease some of Ruths concerns, for you began that post apologizing to her for having frightened her a bit and then you hit in with more right after.  

So, please forgive me my friend if you felt like I was trying to correct you.  I wasn't.  I was merely trying to buffer your post a bit.  That's all.   Like I said, your suggestions were good and they were, but I don't think that this is Ruth's son's situation especially if the doctors hadn't already questioned such situations that would be as acute as those.  

I hope you understand.


Hugs!


Lisa

Hi Ruth and Lisa ,

Ruth , I am glad everything is ok

Lisa I understand your point . I am careful and only say stuff that is widely available . I would hate for anyone to be accused of munchaussens . I have has the barely veiled accusations. Its all about balance . I do some times get to the nub of a problem and say what I think that person needs . Sometimes that can be forthright so the reader gets my point , as ambuiguity can be dangerous at times . What I write can be read differently . Too many yrs as an RN .

I aim to balance what I write  

None of us know each others whole stories .  So I am aware of the balance in which we want to pass information , which may be relevant to that person if not absolutely mast cell , but don't want to scare .

Onwards me thinks

many hugs ,

Josie