Here's where I'm going to put some commentary. This will be boring if you're not affected by a chronic, debilitating condition. Heck, it might be boring if you are...
I've had migraines since my 13th birthday, over 25 years of migraines. They have been very inconsistent. I never know when I'm going to get one and they are ALWAYS debilitating for hours or days. Sometimes I get one and it goes away and sometimes I get several for days in a row. There are many symptoms in the days leading up to it. Sometimes I get the symptoms and a migraine, sometimes I get the symptoms and no migraine. When I do get the actual migraine, it's always preceded by an "aura" where I can't see and I get really, really stupid. If I don't do something about it (take a pill), I will get a headache like no other and I will vomit. The nausea and vomiting are the toughest part of having Addison's and migraines. With Addison's, vomiting can be dangerous because we have to have cortisone to live. If one can't keep the cortisone down, it can be life threatening. With nausea, it can be difficult to take the cortisone as well because cortisone can be hard on the stomach, upsetting it more. It's a vicious cycle!
Anyway...the migraines are debilitating. I spent 2 days the week after the 50 completely unable to do more than lay on the couch. I went to the ER for nausea and then, later in the week, to the doctor's office for nausea meds, pain killers (first time requesting them in 25 years!) and a head CT with contrast. I spent one day down last week with a migraine too.
Migraines suck. If you have any hints or suggestions, please make a comment OR email me at contact@addisonssuport.com. I'm currently trying to go gluten free and chocolate free but I don't have high hopes for any success. The most frustrating thing about these suckers is that they are so unpredictable and unexpected. I hate being slowed down, I'm slow enough as it is!
22 comments:
sigh))) Hi Dusty, hope ur feeling better today...so sorry to hear about those crazy migraines, please take care of urself ...really does suck not knowing when they hit & how bad, thank goodness U have a great spirit and you have running to help keep U sane!
I have no help for the migraines other then just KEEP positive and keep running and get ready for NYC Marathon...so excited for u guys that you got in, that is going to be an awesome experience!!
Dusty, as a intermittant migraine sufferer I wish I had some NEW advice. (By the way I've had Addisons & Hypothyroidsim for 25 yrs.,Type 1 Diabetes for 33 yrs and Celiac disease for 15 yrs.) Despite all of that I am as healthy as a horse(I have a 7 yr. old son) I sail competively, I ski and play golf . . but its those darned migraines that can come out of nowhere and ruin all my work and play.
Your story is truly inspiring . . .I so admire those with medical conditions really pushing their physical limits. (Safely !) I will follow your story, good luck. Best, Deb
my mother has addisons and its so hard to find people with addisons.. my mom takes hydrocortison and crtisone. but that s it..wat else can she do for her situation?
Hi anonymous,
Please have your mom contact me with any questions she might have. First she should download the Addison's Owner's Manual. The link is on the front page of my blog.
Dusty
contact@addisonssupport.com
Hello, I have been a migraine sufferer for 23 years( since I was 10), diabetes for 20 years, Hashimoto's for 1 year and now adrenal Insuff.
By far the worst is the migraines, I can get up to 10 per month or more. I was on a triple meds for prevention and it worked quite well. They were nortryptline, zonegran,and aticand. I also do zomig for pain and phenagrin for nausea.
I am off the meds right now because I hope to try and get pregnant so I can't take them, and it is awful!
Good luck, I hope you find something to help?
Tanya
Tanya,
Good luck with the pregnancy! Your migraines sound so debilitating. I hope you get a reprieve when you get pregnant.
Thanks to all for reading my blog!
Dusty
I know this is a very old post but It's never too late to help with migraines! I foung your blog while searching AI. I may have pituitary damage and finally after suffering my whole life( 30 years) and my parents tellig me I am just lazy and unmotivated (from disabling fatigue and blackouts) I may have an answer. Of course, after it got soooo much worse after giving birth.
Anyways, no migraine med has ever worked for me. NONE! And that's trying meds since I was 12ish. My Neuro said to try 250 mg of Riboflavin (Vit B2) a day for 3 months and many people have much less frequent or much less severe migraines. I had 4 a month or so before pregnancy with no vomiting, after giving birth they were as frequent as 2 times a week with vomiting. I now get 1 or 2 a year. He told me it doesn't work for everyone but many people benifit from it. You have to take it for 2-3 months straight to see a change, and continue from there. Some days I miss it for a couple of days and see no migraines return. But, when I miss it for a week I get rebound migraines that last 3 days.
Another Neuro (at Mayo) said I can add Magnesium to the mix. I forgot how much. I was told this because the docs thought my constant dizziness and nausea were constant migraines without headache. I knew better because I had migraines nearly my whole life, so feeling it was hormonal I had to force my way into Endo who is looking into Secondary AI.
Anyway, good luck to anyone who reads this. God bless
Leah,
Thanks for your comments.
I've tried everything you mentioned and more with NO alleviation of the migraines.
Last June, I started on T3 in addition to T4 and, WOW!, my migraines have been nearly nonexistent since!!! I had a mild one when my T3 dropped low due to extreme exercise.
:) D
Hi Dusty,
I was diagnosed with Addison's in November, 2010 and stumbled upon your blog while searching for more information. I just read about your migraines and I felt as though you were talking about me. I have had the exact same type since I was 12 years old...the auras, the symptoms, the unpredictability...exactly what I've experienced for years.
Becky C,
The migraines I was having in 2007 were inconsistent. Right after this post, I noticed that there was a pattern to my migraines. They came on Day 29 of my cycle. EVERY DAY 29! Then, they moved to Day 10 of my cycle. I started T3 last June and very unexpectedly, my migraines virtually disappeared. My T3 needs to stay in the upper third of the range for me to keep the migraines at bay.
It's definitely something to check into!
Dusty
I have a VERY similar condition - pretty much exactly like you described. Fortunately, some years ago, I visited a really good migraine specialist. He told me to not even bother with 200mg Advil. He said to take at least 400mg, and I usually take 600mg. I do not take Triptans, just Advil Gel. This not only eliminates pain, but also takes care of nausea and vomiting. This year, when I was diagnosed with Addison's, I was really glad that these migraines no longer affect my digestion. Couple more suggestions: when you get the aura, lie down as soon as you possibly can. This will cut down on further symptoms, especially pain. Then take a 1-2 hour nap, and immediately after, go for a walk. Do not stay in bed - that will make it worse. All this advice works for me, your mileage may vary though. Good luck!
Matthew,
Have you checked out my Addison's forum? www.addisonssupport.com?
This post is from 2007, with the addition of T3, my migraines unexpectedly disappeared. As long as I keep my free T3 in the upper end of the range, I get no migraines.
I never take less than 800 mg of Ibuprofen. As for laying down, I had no other options because I am often blinded by the aura and unable to see to inject my Imitrex or get to the bathroom!! When I did get migraines, activity would make the head pain worse and make me puke, and, eventually send me to the ER because I couldn't keep my meds down.
Do you have an emergency injection kit? Migraines have sent me to the ER more than anything else in the decade i've had AI.
Dusty
Dusty,
Hi there. I have had daily migraines for 3 months. Heavy aura as well. I had tests run, my cortisol was very low, but I am still making cortisol, just not in normal range. Makes since, I have been so so tired all the time. As well as my free T3 is low. Your post makes me wonder! I was told if you treat low cortisol then your T3 will level out.... just wondering if you found that to be true.
OMG I just found this site! I was just in crisis for the first time and I almost died in August. I have had migraines since I was in the second grade. The ONLY thing that works for me is a nerve block done by an anesthesiologist. It lasted 5 years with NO MIGRAINES!
You need a pain management docotr!
Jill
Lee Lee, maybe they did level out but they leveled out really low!
Jill, my migraines resolved themselves with the addition of T3!!!!!!!!!
I've not even had the hint of a migraine since 11/10. One year migraine free!
Dusty
i also have addisons and these horrible migraines, and have been researching new meds to take for migraines(only cause exedrine migraine no longer workw for me). I found a couple, one is feverfew which is a plant and healthfood stores sell. The other which im trying now with good luck is Magnesium Glycinate. I hope one of these helps you. Please lemme know if it does my email is kikio_27@yahoo.com
Hi my name is Sara and I am so grateful to have found this site and see that I'm not alone. I was diagnosed with primary addisons or the autoimmune form when I was 14 years old. Around that time my migraines began and I have been battling them ever since. I have tried every migraine medication including the triplans and anti convulsants. The one thing that did keep me out of the dreaded emergency room was getting Botox injections every 3 months from my neurologist. I then noticed a decreased frequency and intensity of my migraines. My migraines also seemed to always be hormonal being their worst prior and during my cycle. Things changed for me March of 2011. My migraines became constant, but I was still able to work because I was desperate to hold on to my career. Being desperate led me to the Hormone Replacement Center where in November of 2011 they did implants of estrogen, testosterone and oral progesterone. Immediately after this my migraine intensity was unlivable and debilitating. At this point I was no longer able to work and had to start taking opiates for pain management. My migraines have continued like this for 14 months and counting. My endocrinologist has told me time and time again that Addison's is unrelated to my migraines. I have been trying alternative therapies like cranial sacral therapy, accupuncture, chiropractic, meditation and very low key yoga. None of this has helped and my head continues to pound constantly and my MD's have not been helpful. I have been researching butternut and feverfew as options to try. I just can't be a guine pig to all the migraine meds anymore! I've read here about the T3 being low and migraines so I'm checking that now. Im also planning on going to the Mayo clinic in Rochester to be assessed their.
If anyone has any advise or has the same symptoms I do I would love to talk. I have led a fairly normal life with addisons being diagnosed when I was 14 and now am almost 32 except for the migraines. In the past I've been to afraid to research addisons for fear of what I would find, but I now know that I need to be proactive about this! This site has suggested some great things like splitting my hydrocortisone doses up along the day as opposed to just taking 2 doses as I always have that could lead to a better quality of life - thank you
Sara,
Come join us at the Addison's Support Forum. www.addisonssupport.com
or find us at https://groups.google.com/d/msg/addisonssupport/-/-Fkc5gPYJdwJ.
I'm looking forward to seeing you post!
Dusty
Hi Sara, I do totally agree that Addison's and migraines have a lot to do with each other, at least for me they do! I do three doses of cortef per day, but have done two also. I do know that hormones are a big influence for me and my migraines. I am 38 and I do take testosterone and progest. which does help somewhat??
I really have not found much to help my migraines after having them since age 10. I have even just gone gluten free, as I am gluten intolerant. I hope you get some help, good luck! I too went to the Mayo, just be careful of the Endo. department! Take care!!
Tanya
Tanya, please come discuss migraines and AI at www.addisonssupport.com!
I was diagnosed with Addison's in 2001 after chemo knocked out my adrenals (although there was some discussion about which came first: Addison's or the cancer, since Addison's affects the immune system).
The headaches started. I thought the headaches were from compression fractures in my spine from the cancer.
Nothing worked. I had a headache, non-stop for six months a few years ago. I usually wake up between 2 and 4 a.m. with "the headache."
Then, a couple of weeks ago, I read online that I should be splitting my 30 mg dose into 20 in the a.m. and 10 before bed....this is something my endo told me NOT to do. No headache that morning, nor the next, or the next. In fact, I haven't had a headache in two weeks EXCEPT for the one night I forgot to take the hydrocortisone. I don't have a clue why it is working on the headaches, but I'm just happy it is and thought I'd pass the information on in the hopes it might help someone else.
In fact, that's why I'm online today...to research the "why" of how this night-time dose is working on the headache.
FYI: I keep nausea suppositories AND injectable Solu-Cortef with me at all times. Especially essential when travelling, exercising, etc.
Does anyone else feel that endocrinologists know very little about the REAL in's and out's of this disease? I've been to three, all of which don't seem to give a darn.
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