Help ....any suggestions( kind of a long post but desperate)

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Help ....any suggestions( kind of a long post but desperate)

Post  Artemis on Mon Mar 18, 2013 7:43 pm

I started having chronic migraines ( daily) this past November. Prior to this point I had a basically headache free adult life , literally perhaps three migraines since in the span of almost 20 years ( I am in my early thirties).
A little background, I have found and eliminated any food triggers.This helps in that I know if I am having a migraine free day do not ingest any of these triggers or I will soon pay the price. Having said that this did not really eliminate nearly daily migraines. I still avoid food triggers as well as foods that are not "whole foods" as I something of a health nut for lack of a better term.
Here comes my dilemma ....over the period of time since the migraines started I first saw ER doctors, then my primary care doctor, then the neuro. I have been through a series of trying to figure out what will work for my migraines. So far we know this...I cannot take triptans ( NONE of the many available ones, as we went through several options in the hope of one working/not giving a reaction) I am allergic to them as we found out , so I am not willing to die from anaphalaxis in order to stop a migraine. Beta blockers do not work , I still had chronic daily migraine while on them. So for rescue they are out of the question.
Finally as a preventative I was started on Elavil and now am at the max dose of 50mg nightly, this has offered the best relief so far as it got rid of the daily migraine but I still need in a very bad way an alternative for rescue meds as I still have at least once a week. Why so desperate ? As I just learned this past week and spent time in the hospital for my breakthrough migraines are chronic hemiplegic complex migraine ( complete with paralysis of my entire left side for three days).
I need suggestions for a rescue medication to bring to my doc...I cannot take NSAIDS as I have a history of colon cancer and still suffer from colorectal bleeding , so following ( and appreciating ) the advice of my G.I. doc NSAIDS ,including toradol ( which works great) cannot be my rescue med.
I cannot take fioricet ( and am not really a fan of this due to risk of rebound headache , again this is due to G.I. issues which it causes.
They were giving me dilaudid but I would really like to avoid such a strong narcotic , and again it does bring on rebound headache fairly often.
I can take phenergan ( if I take with benadryl) and while this relieves the nausea that comes with the territory, it doesn't get rid of the migraine.
I do not want to end up in the hospital again, I know now if I get aura, followed by tremors in my hand and leg , that a breakthrough migraine is on its way and withing 24 hours the numbness, weakness, and then paralysis follows.
I have a follow up appointment on friday with my primary care doc ( my neuro is booked a month out so I am on his cancellation list) so I really , really hope someone can give me at least a few suggestions to take to her that will help me at least make it through until my neuro can see me.
So to sum it up...I have found a fairly good preventative ( Elavil) but desperately need something for the once a week breakthrough migraines ( above is listed the ones that are contraindicated for me, pretty much everything that usually works for the average bear )...Please Help !



Artemis

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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Seaine on Tue Mar 19, 2013 9:55 am

I don't think there are any other rescue medications besides the triptans. That's so awful that you're allergic to them! I can't believe Toradol worked so well for you - on my recent urgent care visit with a migraine, I barely felt any difference after receiving a Toradol injection. But if you can't take any NSAIDs, then narcotics may be your only option. As for the nausea - have you tried Zofran? I'm also allergic to Phenergan and Compazine but Zofran works great for me.

Could you please list your food triggers? I started an elimination diet yesterday to find out what all of mine are so I'm very curious.
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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Artemis on Tue Mar 19, 2013 10:36 am

My food triggers are : chocolate in any form, any kind of nitrites or nitrates ( such as in deli or cured meats), aged cheeses, gluten ( I am not gluten intolerant or allergic such as in celiac disease it just triggers migraines in me) caramel coloring , food dyes, caffeine, msg, and sushi ( at this point I am thinking it is the rice wine vinegar that used in sushi rice as I can eat the ingredients separately). tomato any anything made with tomatoes....so far these are the food triggers that I have found will always trigger a migraine for me Smile

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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Seaine on Tue Mar 19, 2013 1:22 pm

Ok thanks! I have already found nitrites and artifical food coloring, and I am strongly suspecting Milk or casein, the milk protein, as well as chocolate.

Interesting that you say caramel coloring, I will add that to my list of ingredients to test.
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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Mini on Tue Mar 19, 2013 2:51 pm

Hi Artemis,
What a lovely name, shame that you are also affetcted by this horrid pain.

I am so sorry that at this stage I cannot make more detailed comments becasue I could not read much of your post.
Many of us here have this ptoblem: we cannot read long blocks of text unless it is devided in a small, easily read paragraphs.

You can do it easliky by going to "edit" and dividing the existing text into some smaller chunks, then you will usually get a better response.

I know you were asking about triggers, there are many which took me years to discover, like all citrus fruits and drinks, and , soy sauce and all soya products which can often hide amnogst other ingredients when we least suspect them.

Also many other environmenyts factors: bright lights, loud noises, and smells (even when they are pleasant) including expensive perfumes.

The list all triggers for some of us is indeed very long, but I've found that avoiding as many as I can has saved me from many unnecessary M (migraines).

Try also to read: "Trying to sort out food triggers" thread on the same page, and you might find some more useful information.
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No NSAIDS for me either

Post  doximom on Tue Mar 19, 2013 3:11 pm

I have GI problems too -- no oral NSAIDs for me at all, though triptans do not affect my stomach. Is there an alternative to oral meds, perhaps injectable or inhalable?

So far my alternative has been to suffer -- not a great alternative!


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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Seaine on Tue Mar 19, 2013 5:09 pm

I just read about Ergots, which is apparently another type of rescue medication that can be tried when Triptans and NSAIDs don't work.
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Re: Help ....any suggestions( kind of a long post but desperate)

Post  Mini on Tue Mar 19, 2013 9:42 pm

Yes, ergots can indeed be very effective rescue medicines.
They were used more widely before triptans (under different names in different countries), but like with many rescue medicines with too frequent use, they might over time loose their effectiveness, or can be prone to rebounds.
They are cheaper them triptans, usually generic, so many doctors do not prescribe them and prefer to prescribe the latest, heavily promoted more expensive medicines.
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