It’s very hard for me to start writing again after I have been away for so long. Especially after I wrote 2 posts that I am very proud of right before I had to go away. Why did I go away? Because my symptoms have been worse than usual. Specifically my migraines.
I won’t go into a lot of detail about what happened to me specifically. Let’s just say, my migraines have been off the charts. Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt! I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible). I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.) I have chronic migraines. Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year. (normally, you have migraines more days than you don’t)
A lot of people think migraines are “just a headache”, they aren’t. So I’d like to take a little time to talk about migraines.
Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment. If you have any of these symptoms, please talk to your doctor. You do not have to have all of these symptoms to be classified with migraines, you can have a few. There are also different types of migraines. You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.
All the information I am sharing below comes from The American Migraine Foundation you can find out much more information there.
- Migraine is an inherited neurological disorder.
- One in 4 households has a member with a migraine disorder.
- Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
- The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet. Chronic migraines are even more disabling. Yet it is almost impossible to get disability due to migraines. If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
- Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
- There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur. And constantly trying to find the right medications with the fewest side effects to help with this goal.
- Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies. This is great if you can figure out your triggers. Also, if your trigger is weather related, how are you going to avoid that? I can’t stop the weather from changing.
- Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications. This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches). See more information below. I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
- Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications. And the 60% just suffer??
- Medication side effects often limit the use of migraine medications. Oh yes. I know this very well. Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?
I only just touched on the surface of migraines. There are many different types of migraines. I haven’t even talked about all the symptoms I have.
I would like to talk a little bit more about the treatments.
Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount. Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication. Sometimes I have to take 2 when I have a migraine. That would only cover 4.5 migraines. If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble. This medication works best if you take it as soon as you feel a migraine coming on. Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills. This is so sad. Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world. Of course, taking to many will cause medication overuse headaches….discussed below.
It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it works. Unfortunately, we haven’t found a preventative medication that works for me. I have had some work for a while, then they stop. We are constantly trying new things. Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own. And that is often too late for the drug to work properly. It’s a Catch 22.
We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic “Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.
It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”
For extensive information on Rebound Headaches, The Migraine Trust has a great article titled Medication Overuse, it if very informative. If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article. This can also include the use of caffeine.
Another issues migrainers face is that we are often labeled drug seekers. I can’t even take narcotics. I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there. They have put them aside and just tell them they aren’t going to give them any drugs. I don’t want narcotics. There are specific migraine medications that I want. Luckily, my doctor has taught my husband how to give me those shots so I have them at home. I’m in the minority, I’m a very lucky patient. I am able to see a neurologist who specializes in headaches. There are very few of these doctors. Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized. All she does is headaches. It’s great. She is working very hard to get my headaches under control.
There is a great infographic that gives wonderful information on Migraines here, and another on Chronic Migraines here.
That’s all I have to tell this time around. I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.
If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….
I wish you all a Happy Thanksgiving! And I want you all to know how very Thankful I am for you. You are pretty darn special to me.
Picnic with Ants 
That just sucks! 😦
I hope you can have a decent or at least tolerable Thanksgiving.
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Rita,
we had a very quiet thanksgiving, like we normally do. My husband makes an awesome turkey breast in the slow cooker. So it was all good.
I hope you felt well enough to enjoy yours. You have been feeling really icky lately. Sucks.
Thankful, I met you.
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Hi, Got your e-mail,sorry for your migranes, I know how that can be. Did you ever check out the site with Dr. Michael Gach, he is into accupressure, he helped me. Also the Tapping Solution. Anything is worth a try. Be well and Happy Thanksgiving.Natalie
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Natilie,
I hope this was supposed to be a comment on here. There was some of the email address in the comment, so I took it out. 🙂
I will look at Dr. Michael Gach. I used to have a wonderful Medical Massage Therapist who helped me, but we moved and the ones here are way out of my price range.
It is crazy. I could have seen my girl there 3 times for 1 time here. I know the girl there gave us a discount because I was a regular, and she loved me, but golly gee.
I’ve heard of the Tapping Solution and tried to look into it before, but got completely lost.
I have found one of my triggers is allergies, and it appears our apartment may have mold. another reason we need to get out of here as soon as possible.
Bad time of year to be looking to move. Add in me going to John Hopkins on the 8th…wow.
You are right..it can’t hurt.
Thank you for your suggestions.
I hope you had a good thanksgiving.
I’m very thankful that you thought enough about me to give me these wonderful suggestions.
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Powerful post about powerful pain.
There is more awareness of the issue of scents in Canada. Government offices, hospitals, clinics, some schools, universities (or buildings on campus) are scent free, and scent free products are much easier to find. Makes a difference! I have to take a deep breath and run through the perfume section of department stores — often right at the entrance so hard to avoid.
Thanks for working through your migraine and providing all these great resources.
You mention the weather as a cause of your migraines. There are those in medicine who now feel barometric pressure is the largest trigger of migraines, out surpassing food, medication, hormones, stress. A friend tracked changes in the air pressure and her migraines and at least 99% of the migraines happened as a direct result of barometric changes.
I had to break down and take a migraine pill tonight. I even do the “taboo” of cutting my pills in half — if half works, then that gives me another 1/2 for another migraine.
Thanks again.
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Scents are horrible here. I can’t walk into any place without getting accosted with scents. I’ll walk by someone who had to bathe in perfume, I think…really? Are you trying to cover up BO or something? Can you not smell how much you stink? Then I start to wheeze. and my head starts to scream. I think…I used to wear perfume, but I never wore much. Often I would wipe most of it off afraid I smelled too much. haha
I just don’t get it. That is another reason I have problems with visiting people. How do I say…yes please visit me…oh but don’t wear any perfume. and I’ve actually done that and someone came over and they hugged me and I started to wheeze. I had to use my inhaler. They said, I have no perfume on. I said, maybe it’s your fabric softener. No…soap…no…then they reached in their bag and put on scented hand lotion, all over their arms. Ummmm…what? Oh my gosh! but when I really want visitors, how do you say, only if you wash your clothes with no fragrance, and you bathe with no scents, and no perfume…ect. heck, I hate it when we go to the vet and the nurse holds my dog.
Yes, barometric pressure is a big trigger for my migraines. Like I can control that one. and scents…and that’s hard to control too. allergies…often hard to control.
For you, you have to take so many pain pills for so much other stuff, you can’t make sure you aren’t getting medication over use headaches, or rebounds. How could you not be? Confusing. Thank you.
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Wendy, over the years I had clients with similar “scent” problems – some milder, some much worse. Description below is actually a blend of their stories, my attempt to respect their confidentiality, but I will write as if I am speaking of one single individual I’ll call Kathy.
Among other challenges, Kathy’s most serious problem was a complete breakdown of her immune response triggered by – of ALL things – breast implants (since removed – and she can no longer use the hair color she’d applied for practically as far back as she could remember – or any products like make-up or bottled moisturizers, hair spray or mousse, etc.). She even had to leave anything new (including furniture) outside of the house to out-gas before bringing it in, she became so over-sensitive and her symptoms were so severe.
Her maid (luckily, her husband could afford one who was willing to work within Kathy’s limitations), had to remove her “outside” clothing and shoes, sealing them in a clean garbage bag left in the garage, changing into “clean-space” clothing as she entered, ducking into a side room off the garage in her underwear (which she had to launder at her own home in special detergent with NO fabric softener) – repeating the process in reverse upon leaving. Even the new sneaks they bought for her (washable!) remained in the house, NEVER to take even one step outside.
Kathy’s husband, who worked outside their home, had a similar process he had to go through every night. During her weekly all-day visits, the maid laundered his bag of outside clothing in the garage, where they’d moved the washer and drier (both vented outside). His clothes rack was in the garage as well, since suit-coats, etc. had to be dry-cleaned and never had time to out-gas. No cars in the garage, either. EVER!
He grabbed a shower the minute he came home, btw. – before giving Kathy a hug or coming into the room where she was. Even though they were childless, vasectomy was their choice of birth control, since those products were verboten as well. NO pets were possible, and food-odors had to be carefully exhausted from the kitchen, where he did most of the cooking and interim cleaning.
She DID have to explain to her friends and family what they could and could not use/wear/even EAT when they visited her – and she kept slippers and robes for them to wear in her house, along with baking soda, clean toothbrushes and special mouthwash, just in case they forgot or weren’t sure. ONLY when “she” became willing to insist on what she really did NEED, did she begin to get slowly and slightly better (years of this for the worst of them – others responded more rapidly to milder interventions).
As you can imagine, “Kathy” only remained healthy when she remained TOTALLY housebound in her clean-house, which – as you know – is impossible, even with help with shopping, etc. She HAD to get out for doctors visits, etc.
So try to think about “Kathy’s” story whenever you feel reluctant to explain – in detail – about what sets off your migraines. NOTHING with fragrance – not even fabric softener. It’s really not much to ask of anyone who is healthy – but they will probably have to be reminded. Every. Time. Please forgive me if I seem to be skipping blithely over how REALLY hard it is to ask for what you need when you are so eager for visitors. It must be awful to feel like you have to choose between your health and isolation.
I hate that you have to deal with this. I have been so fortunate in that regard – allergy induced sinus headaches are my only headache nemesis, and they respond well to the newer 24-hour allergy medication, now available over the counter. I am such a baby when I let THOSE get ahead of me, waiting for the medication to work its magic, that I truly can’t imagine having to cope with what you have outlined in your excellent article. I learned a lot, btw, so thanks again for educating me – even though I can’t really imagine what it must be like to suffer what my college roommate referred to as her “sick headaches.”
BY THE WAY, I have a pdf of an interview with one of the preeminent pain scientists with a life-long career in pain research — a transcript of one of the Brain Science Podcasts I rave about on my blog. He does a great job explaining the mechanism of pain – but there is little, still, he CAN offer beyond information that might allow you to better understand and really believe that you are NOT over-reacting (and intuit why your mindfulness practice is probably helping). Let me know if that might be something of interest, and I can attach it to an email and send it on. (Perfectly okay to say no thanks too – or to take forever to get around to reading it).
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to educate a world!”
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Oh my friend, it is hard to ake those requirements when I barely see other people, except for doctors and such, and Stuart, for months andmonths…well I see the house cleaner every other week, but it’s not like she sits down to visit. She is wonderful about scents though. She uses the best products….products I woulduse, but she got them…she opens the windowing each room she is woking in….well she is just a gem. It still bothers me sometimes if I’m extra sensitive that day, if so, I wear a mask or sit outside, depending on the weather. The scents also get to me because I have asthma. Joy, I kmow. But I am not as chemically sensitive as the friend you mentioned. Poor thing,I’m glad people understood. I don’t even have people who will put up with me not being able to hear them easily. Yes, I have to read your lips, get over it.
I’m totally shocked that my of my old friends were ever my friends, I look back now and think….how did I not see that in them….I can see the clues now. I overlooked and forgave too much.
I’m glad you got a lot of information from this post.
I know my pan is very real, I don’t think they know exactly what causes migraines though…or clusters.
Does the podcast you mentioned have subtitles? I’d love to see it if it does. I’m lost if they don’t.
I do so adoready you.
xo
w
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I promise I’m not trying to spam your blog!
I am playing catch-up from many months when, to cope at all, I simply had to stay away from most of the internet most of the time. I’ve even deserted my own blog for most of 2014. Now, because I finally have a bit of a brain and my “days” are nights currently, I want to use some of that time to see what’s up with you, and can’t help but react to what I read.
I comment like I talk (a lot, I’m told ::grin::). Don’t feel like you have to respond in kind (tho’ I do love it when we dialogue, don’t allow it to be pressure. ) I GET it – some days even reading comments is too much, given all. (Especially wordy ones like mine ::even bigger grin::)
I hope I’m not being annoying in my attempts to support. I KNOW you are dealing with SOOOO much – more than I can wrap my head around, actually. My intention is only to let you know you are not alone, and that I can sort-of understand/relate from my experience with client struggles through the years, even though I, personally, have it easy compared to you (by FAR!)
Still, others have it far easier than I, and I find it so annoying when anyone communicates with me as if they believe that I am over-reacting or haven’t been really trying to recover from set-backs (even tho’, when depression grabs me, I’m NOT really trying to do much besides stay alive and get thru it – and I know you get that!).
I know that my own long-term friends now find it difficult to “be” with me since the crazy set-backs have really piled up over the last 5 years – I think they feel a tad guilty that their own lives are going well, and they don’t want to rub it in, so they’re not sure WHAT to say. Still, a few of my besties DO still communicate to let me know they care. (I hope you know that YOUR comments on my blog have been a godsend.)
I’d like to shake a knot in the tail of some of your ex-friends! I mean, they could at least support your blogging efforts – and leave comments, right? Karma’s a bitch – so I’m sure some tough times are slouching their way!
About your last question:
The podcast does NOT have subtitles – but the transcript pdf is just WORDS – so you can read it, bit by bit if you have to. I read much faster than I listen, if you know what I mean – so I like to get the info in both formats to be able to keep up regardless of time pressures.
I’d be willing to turn it into a Word doc, too, if that would help at all. (Depending on my functional temperature, I do that sometimes so that I can add formatting, etc. for focus and info retention.) I found it quite fascinating. Let me know – but NO pressure. Don’t let it be a SHOULD!
xx,
mgh
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Wendy, What a powerful, informative post! Despite all of the pain you have gone through and are going through, you took this valuable time to share with others. Gratitudes include your name.
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thank you Lisa,
You are forever in my corner, and my dear friend.
I am so grateful for you.
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As Wendy knows I was recently diagnosed with Vestibular migraines.
Mine are very barometric related.
I had noticed that when I was having one I would NOT want to smell any type of food. I’ve been sensitive to candles my whole life.
I also feel better in the mountains !
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Carina…
yes, mine are very barometric related too.
and allergy related. I started taking Flonase again recently…forgot to start at the beginning of the Fall, wasn’t feeling like I needed it.
Well I did. My headaches are better. not gone by any stretch of the imagination, but better.
Funny, you feel better in the mountains. I feel better at the beach….but MUCH better in the desert. Oh the desert was a dream.
Well, Palm Springs was. it does have moisture, so it isn’t as dusty, but the humidity isn’t there, and the barometric pressure is pretty darn steady.
but in Tucson, it is very dusty, and my allergies go crazy. so my asthma..I cough a lot.
Which is better? headache of cough. headache. i don’t like not feeling like I can’t breathe.
Unfortunately, Palm Springs, is the most boring place on the planet to live, and it gets to be 120F in the summer.
Ehhhhh. Oh but the winters. I miss the winters.
love you my friend.
I’m very thankful for you.
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Can you believe I forgot about this post, given all my communication about it?
This is a wonderful choice to add to September’s calendar in the Chronic Pain Awareness section, Wendy. It has also given me an idea about an article I may have time to put together to post during the month. I will link again if/when I do.
Thanks for taking the time to search your archives. I do realize that sometimes even that is beyond you, given your health challenges. NO pressure or censure from me – EVER!
xx,
mgh
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Madelyn, you are a Dear!!
My health has been pretty good, but I hurt my back. It has taken a lot out of me. I’m beginning to wonder if it will ever get better.
One day at a time.
Thank you for believing in me.
Wendy xo
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How could I NOT, Wendy? You are incredible.
Sorry to hear about your back. They seem to be easy to injure and take forever to heal! (I wear my back brace afterwards to remind me not to strain it while it’s still healing).
btw- link to call for study participants re: lower back pain in the Relateds of Friday’s post (9/1). It’s a yoga study. Follow your upcoming ping and click that link (scroll way down) to check it out – you may not have to go anywhere but the i-net to reap the benefits.
xx,
mgh
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