Share this:
jjgardner
@jjgardner

Posts: 9
Joined: Mar 10, 2017

Anyone with constant migraines, unrelieved by any treatment?

Posted by @jjgardner, Mar 13, 2017

I suffer from constant migraines between 10-30 in 24 hrs un relieved by any treatment including relpex, nemenda, topamax, Botox, amlodipine, forericet, propranolol, Vicodin am at my wits end, feeling hopeless. Also being treated for infectous disease they think is Lyme but unclear because blood tests negative, clearly I have some infectious process going on that happened when I spen time in tropics. Help.

REPLY

Welcome to Connect, @jjgardner.
As a person who suffers from migraines, you are unfortunately not alone. Let me introduce you to @mkell13 @jenapower @lauriedr and @kdubois who understand first-hand what you’re going through. You may also be interested in joining this discussion group.

– Migraines http://mayocl.in/2d3qTUi

JJGardner, did your migraines start at the same time as the infectious disease became apparent? Or do you have a longer history of migraines? We look forward to getting to know a bit more about you.

@colleenyoung

Welcome to Connect, @jjgardner.
As a person who suffers from migraines, you are unfortunately not alone. Let me introduce you to @mkell13 @jenapower @lauriedr and @kdubois who understand first-hand what you’re going through. You may also be interested in joining this discussion group.

– Migraines http://mayocl.in/2d3qTUi

JJGardner, did your migraines start at the same time as the infectious disease became apparent? Or do you have a longer history of migraines? We look forward to getting to know a bit more about you.

Jump to this post

Thank you so much for responding to me. The sensory motor issue happened suddenly while in the tropics, I had been able to walk 5-11 miles daily, work out, one day I was overcome by the heat and humidity became unable to walk, talk, dizzy, tolerate being outside. I should also say that I was getting all kinds of bug bites, fish were dying in the oceans, my husband and I had been in the swamps with all kinds of animals.
I started getting migraines a few months after, then developed other symptoms such as peripheral neuropathy, numbness and tinglingling in face, body, loss of strength hands,motor, cough, SOB, eye pain, double vision, spasms, the headaches became called status migraines, without relief, nausea,
Mult other symptoms, bedridden, went to many different doctors who ordered all kinds of tests- still my neurologist and infectious disease doctor unclear what I have butane been treating me for Lyme – like disease with antibiotics for a month, still symptoms persist.
Have had MRI, Ct scan, blood work, next step is spinal tap,
Don’t think its autoimmune, still going infectious route.
Thanks for your help

@colleenyoung

Welcome to Connect, @jjgardner.
As a person who suffers from migraines, you are unfortunately not alone. Let me introduce you to @mkell13 @jenapower @lauriedr and @kdubois who understand first-hand what you’re going through. You may also be interested in joining this discussion group.

– Migraines http://mayocl.in/2d3qTUi

JJGardner, did your migraines start at the same time as the infectious disease became apparent? Or do you have a longer history of migraines? We look forward to getting to know a bit more about you.

Jump to this post

I’m sorry, I wasn’t finished when I hit the post reply.
I’m not sure whether the migraines are related to the other issues going on, and the doctors are unclear as well.
Again thank you for any help or assistance you might have

Try marijuana thc50%

Hi @jjgardner, you’re certainly going through a lot, and I hope you find some helpful information on here. I noticed that you mentioned nausea above; do you also get aura with your headaches? I’ve had migraines and chronic headaches since age 16, and I’m 45 now. (It’s definitely a family thing for me.) And one thing is for sure, if I am sick with anything else, my headaches will be worse.

When I was in my teens, they tried Cafergot, which didn’t work on my headache but made me stay awake for two days. They tried heart medications as prophylactic treatment, such as verapamil, but these never worked and made me tired. I’ve actually gotten headaches while taking Vicodin and we never knew why, but Mayo figured out last year that I don’t properly metabolize many medications due to a genetic issue called CYP450 Deficiency, and for me, pretty much all pain medications don’t work for me. (I had Pharmacogenomics testing done.)

Have you tried any migraine medications? Sumatriptan works on my bad migraines while Naratriptan did not.

What has worked for me are non-traditional methods… I got a daith ear piercing last December, and my headaches aren’t totally gone, but they are better. I also started to go to acupuncture in January, and it helps with both my body and headache pain, as well.

@tonyc55

Try marijuana thc50%

Jump to this post

I have, it doesn’t help and makes me paranoid and feel funny. I tried at the lowest dose possible. Thank you for your response.

Since I have status migrainosus, sometimes I have auras but most of the time not, just the nausea and sensory issues. I have been treated with both sumatriptan and noratriptan, reload then the cardiac and b/p, Alzheimer’s medications, also tried acupuncture which I hated( getting needles stuck in me)
I don’t know what daith ear piercing is?
I find it interesting you weren’t metabolizing medications due due genetic issue, where did you get testing done?
Again thank you for responding

What I wrote which spell check changed was Relpax not reload as above

@jjgardner

Since I have status migrainosus, sometimes I have auras but most of the time not, just the nausea and sensory issues. I have been treated with both sumatriptan and noratriptan, reload then the cardiac and b/p, Alzheimer’s medications, also tried acupuncture which I hated( getting needles stuck in me)
I don’t know what daith ear piercing is?
I find it interesting you weren’t metabolizing medications due due genetic issue, where did you get testing done?
Again thank you for responding

Jump to this post

My pharmacist suggested the daith piercing because he knows that pain meds don’t work for me and he’s had other customers who’ve had it done with success. Sounds weird, but I went to a tattoo parlor to have it done. I had it done on the right because I get most of my headaches on the right. You can’t sleep on that side of your head for two weeks, which is hard to deal with, but it was worth it.

Acupuncture is definitely difficult to get used to, but at this point, it’s my only choice so I tolerate it, and I’m finding that I am showing progress. I just don’t look at the needles while they are in me.

Sometimes, caffeine helps my headaches, but Mayo figured out that caffeine and I don’t get along genetically, so I try to avoid it. With that said, it might help you.

Though people have always told me to put ice on my head, I find that heat helps my head and cold makes it worse. And definitely darkness and quiet. You have to figure out what works best for you.

Yeah, even percocet doesn’t do anything for me, and now we know why: cytochrome P450 liver enzyme polymorphisms. I had the pharmacogenomics tests done at Mayo Clinic’s Center for Individualized Medicine in Rochester, MN on March 1, 2016. They are partnered with a company named OneOme in Minneapolis, and OneOme now has more tests available than when I had them done and at a *very reasonable* price and by mail order. I actually just asked one of my Mayo doctors to order the newest kit for me, which arrived in the mail yesterday. I’ll just swab my cheek and FedEx it back, and they’ll send the report to my doctor. (I live in New York, and physicians in my state aren’t legally-allowed to order the kit for me due to genetic testing laws, BUT since my Mayo doctors are located in a certified state, they are allowed to order it for me, and I asked my Allergy/Immunology doctor there.)

There are also many other private companies that do pharmacogenomics testing, but it seems that you always need a doctor to place the order. The pricing used to be extremely-high, but now the prices are coming down significantly for many companies. You can Google and check out all of the different places; I suggest googling “pharmacogenomics testing” or “PGx testing” or “pharmacogenetics testing”. On the web sites, they all offer very educational information to help patients, physicians, and pharmacists learn more about this issue (though pharmacists are absolutely the most knowledgeable because they take a ton of classes about this). The sites usually provide guidelines regarding how to ask your doctor to order the tests.

And it’s not just pain meds that are affected by these genetic polymorphisms; it’s tons of different kinds of meds (GI, endocrine, psych, etc., etc., etc.). I also learned that many drugs inhibit these enzymes from working properly because they speed them up or slow them down, which makes the enzymes process other medications the patient is taking too slowly or quickly. Actually, foods can affect these enzymes too. This is what medication TV ads are talking about when they mention not drinking grapefruit juice.

Please login or register to post a reply.