Attacks after eating???

[CHfather]

My daughter is getting attacks after eating, in addition to regular nighttime attacks.  This never has happened to her before. She's very careful about not eating trigger foods.  Any experiences or thoughts?????????

[mitch brown]

Try glass of water before and after food. Makes for easier digestion. Smaller portions with more meals per day. Spread out the food intake. And as per above something to assist with digestion.

are her headaches more active right now than usual?

[CDog]

I started having attacks after eating about 6 months ago. It isn’t every meal. I can also eat the exact same thing one day and I am fine, other times I get an attack. The other thing that happens is my head gets hot. Haven’t been able to put a finger on what is causing it.

[Bejeeber]

I'm sorry, I have nothing in the way of experience or reference, so for the moment the only real thing I have is deep sympathy, because it's bad enough for sleep to be a trigger, but now both sleeping and eating? Sheesh what's next, breathing? Hmm if there are trigger fumes/smells in the air I guess breathing actually can be a trigger too, so that does it: Everything can be a freeking trigger now.

I do like @mitch brown's ideas, and as a test maybe a benadryl could be taken before a meal to see whether it would make any difference (not that it would be a sustainable approach for regular use)?

 

[BoscoPiko]

What a bummer! Sorry she is dealing with this. Has she had her blood pressure checked lately? I'm not sure where but I recall reading something about foods with high salt levels causing headaches for folks with high blood pressure.  Also what Mitch said makes sense since the water would likely help dilute prior and after consumption.. Sorry I cant be of more help. 

[CHfather]

Thank you all.  She is going to try smaller meals and water before/after.  She's very diligent about all CH-related things except staying hydrated. 

She's currently doing as much of Batch's "Fully Monty" as she can stand. Quercetin makes her very tired, so I think she would only include Benadryl out of complete desperation. 

12 hours ago, mitch brown said:

are her headaches more active right now than usual?

Tough to answer this, since she doesn't have much of a "usual."  Some cycles are very rough, and others not so bad.  Used to have summer cycles, but it's been spring and fall for many years, so this cycle in itself is a little weird.  For her, cycles usually start out with attacks that occur at erratic times but then settle into a pattern.  This one just started about ten days ago.

Again, thank you all.  

 

[Cast Iron]

What are the moments your daughter is taking the medicines, and does she have regular bowel movements?

The reason for me asking is that the last couple of months I am taking Indometacin to see if I have the rare paroxysmale hemicrania, and I tend to see a similarity between the moments I take my medicines, whether or not I can poo and my CH attacks.

What I’ve learned so far is that I have to use Indometacin after lunch and after dinner, If I take them before or during, my logbook indicate I have more attacks. Also the intake moment is important, 13:00 and 19:00 sharp, where if I have not had dinner before 19:00, I skip dinner because I must have had my dinner before I take the Indo. A side effect of Indometacin is an adverse effect on my bowel movements, I can not defecate for days. I have the strong feeling that the longer the poo stays inside of me, the longer the possibility exists the waste products can swarm within my intestines/body. In turn this may elevate histamine where the D3 might not be able to fully counterattack. 

My situation is not the same as your daughter’s, but maybe she can take a closer look at the moments she takes the medicines and her bowel movements to see if there is a time relation between eating, pooing and attacks.  

All the best

[CHfather]

Thank you!  Eating smaller meals and drinking more water seems to be helping her, but I will pass along this information, because everything helps.

Because we often have people here whose symptoms look like a form of hemicrania, I wonder if you would say a little more about your situation.  Here are my questions, but of course you don't have to answer all (or any) of them.  I really hope you are on track for something good to happen, because I know it's been very rough for you.

You mention that you have been taking the Indo for the last couple of months, and it sounds like you still are not sure whether it's PH that you have.  Did you start out on a low dosage and then increase it based on your tolerance?  What is your current dosage?

How has it affected your attacks? 

What will tell you whether or not it's PH that you have?

As I recall, oxygen was somewhat effective for you.  I don't remember about triptans.  Do your doctors have a diagnostic basis for thinking it's a hemicrania, or is it just that you haven't responded well to all of the conventional CH treatments and they are trying something different?

In addition to taking the Indo with meals (which I imagine is partly a way to protect your stomach from the harshness of Indo), are you also taking something else to protect your stomach?

Have your doctors discussed any of the other things, aside from Indo, that sometimes help with hemicrania, or have you looked into them?  One is boswellia serrata, and there is a discussion of others here: https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf   One person has said that busting every five days kept her HC under control, and I think the vitamin D3 regimen is supposed to help (but I feel like you tried that).

Thank you for anything you choose to share!

 

 

[Cast Iron]

Of course CHfather, sharing is caring

According to the international headache society (3.2 Paroxysmal hemicrania - ICHD-3) PH can only be established when there is an absolute positive result on Indometacine. Let me explain why we (me and my neuro) are exploring this rare syndrome. Over the last two years I have turned into chronic, there was not a period longer than a month that I was in remission. The odd thing about this remission period of a month is, that literature does not state if the remission period is without or with medication. I have to say that even when there were weeks without attacks, I still used my preventative medicines; verapamil 720mg, sandomigran 3mg, naratriptan 2,5mg, D3 and the usual abortives O2 and sumatriptan. On occasions when there was too much pain and very frequent attacks I used prednisone. The prednisone tempered the severity and number of attacks, but not to zero. Back to my situation on why I went the Indometacine route. Beginning of this year the number of attacks was increasing rapidly to an average 200+ a month. On a few days I forgot to take my naratriptan, which let to almost 20 attacks that day. On discussing this with my neuro, we came to the conclusion that if I would not have taken my normal preventative medicines, the number of daily attacks would increase drastically to 20 or more. Another conclusion was that the efficacy of my meds is declining, for example when in the past a 6mg sumatriptan injection gave me 5 to 6 safe hours, no attack could break through, it now has decreased to max 2 hours. The attacks I have are not all that severe, but they are numerous, hence my situation could be marked as PH according to the ICHD-3. 

Since PH is quite rare and my neuro does not have any reference patients currently, we embarked on doing a little experiment in adding Indometacine to my regular medicines. According to literature if one has PH the attacks should dissolve over time using Indometacine. The minimum level where people can positively respond on Indo is 150mg. This level needs to be build up gradually starting with 25mg (plus a stomach protection) and every 4th day increased by 25mg. On 150mg I had no response so we continued to 275mg (almost at its limit of 300mg). Indometacine takes an hour to start working after intake and lasts for about 6 to 7 hours. For me there needs to be a split in doses and this is very strict. Cause in the morning I have barely any attacks, I take the first 125mg at 13:00 and the second one 150mg at 19:00, just to make sure I can counter the attacks I have in the afternoon which continue into the night. Also, I figured out that the Indo is better taken after lunch and dinner, not before or during, but this may vary per person. I am taking for granted the side effects of Indo, in my case inability to poo for days, and more importantly an hour after the Indo intake I really get tired. In the beginning of my Indo trail, I used omeprozol to protect my stomach as a remedy for the obstipation, but to no avail, so nowadays I do not use any stomach protection. 

Because of the gradual build it took me quite some time to get to the level where I can now say that the number of attacks has dropped from 10 to 1 or 2 a day. But. The clusterfuck about this is that I do not know whether I am slowly going into remission, end of cycle, or that I actually have a positive response to the Indo. The only way to find out is the next phase, lowering my verapamil and hope the Indo can hold the beast at bay. Not particularly looking forward to it, but it is the only way to prove if I have PH or not. 

Hope this sheds some light, always open to share more info and experiences.

 

All the best

[CHfather]

Thank you so much for this full and clear information.  I'm so happy that your headache situation is so much better now, and I hope you learn all that you need to know from your next phase of testing, without too much unpleasantness.

It seems that naratriptan is an essential part of your preventive protocol.  Of course, I find that interesting because we hear so much about triptan overuse headaches. 

Wishing you the best as you go forward!!! 

[Cast Iron]

Thanks, will post new developments and results in due time.

I sometimes follow subjects where there is a mention of triptan overuse and the possibility of severe rebounds. That is not the case with me and i think it varies per person what the effect is of triptan use. I am a big guy with quite some weight and because of that I can use triptans more and more often, compared to a person with a lower body mass. 

All the best 

[Mastermerls]

8 hours ago, Cast Iron said:

All the best 

what kind of stomach protection  Do you take it?

Since I suspect that this improvement comes from it.

 

[Cast Iron]

Its omeprozol that i used in the beginning with every intake, now I do without. 

Kinda curious right now on what you mean.. is there a correlation between the stomach protection and the decrease of number of attacks?

[Mastermerls]

I had a stomach ulcer.

After taking pantoprazole, my cycle disappeared

 

That's why I suspect a connection.

Let me know how it goes on, with or without stomach protection in the future.

 

liebe grüße

[Tim Hogge]

What was she eating?  Inflammation in general is often a trigger.  Foods that cause gas and bloating could be setting things off.  Everyone reacts differently to different foods so anything can possibly be a "trigger" food item.  Just a thought.  I just pray my kids don't get CH gene.  Good luck.