Why does this keep happening

Over the past 3 months I’ve only had a couple of days of breakthrough migraines. 

Until 18 days ago. 

Fucking “breakthrough pain”…migraine pain. The mother-fucker…it hit me nearly 20 days ago.  The fucking beast is back, despite my hopes and prayers that I’m healed. I have too remain hopeful. Although not feeling so right now. This migraine, migraine, like most I’ve had, included a trip to the emergency room. I’ve been on steroids, and steroid injections, IV fluids, narcotics, anti nausea medicine/therapies. Since my ER visit I’ve drank nearly 400 ounces of migraine specific, chamomile and ginger tea. I’ve been using the Celafy device religiously and now on my second dose of Prednisone. Yes, this one is really bad and I’m up in arms as to what to do about it…

When seeking treatment at the ER, back in the day, they use to give me a heavy narcotic to STOP the migraine pain in its’ tracks. I would leave feeling fine- no more headache. Not anymore. Times have changed. Even though the local ER staff know me and what helps me they only give me steroids and Tylenol. 

I’m sorry, but if I leave the emergency room with the headache still remaining, I know there’s nothing I can do at home to help. If I leave ER with a pain level of 6- I know I am doomed. I cycle between hope and faith and discomfort and tears.

Migraines interfere in my life for weeks at a time and months a year. I do so well, managing pain and symptoms, then it will hit me out of no where…what the hell, is this madness? One day one medicine will help and the very next day, it won’t. I’ve been in bed, in my dark room with my own air conditioner, for nearly half the month. Ice, cold showers, aromatherapy, chill music, stretches, breathing exercises and of coarse eyelid kisses from my man, all help me creep along the way. 

I know a lot of people who suffer from migraines find they eventually just go away. A lot of women sufferers find that their attacks are associated with their period and that the migraines stop for them after menopause. Not me. 

So when will this miraculously go away? (haha! Let’s laugh about that)

After 12 years of dealing with this totally life changing, debilitating disease, and thus 12 years of spending a majority of my time on the sofa, I can’t imagine that my migraines will just miraculously go away. They are such a big part of me, a huge part of my life. I feel like I have an extra limb that’s attached to my body that Is awkward and unusable. I have to make adjustments to my care, daily. It is a full time commitment to keep me out of pain. 

To think geez,  what would my life actually look like without migraines- Total freedom of pain?… I think I’ve earned that. We all deserve peace. 

I pay my respect to all migraine sufferers. We are a strong group of people. I’m pretty bad but I know there are thousands of people that have my type of migraines. 1% of all chronic migraines suffered have the type I do. 

I lift all of us up. 

This pandemic has been good for my well-being, and maybe for you too. Or you could be feeling worse due to all the changes we’ve had to make, those being our natural comforts. 

Much of my work is done online. So I can still develop my business while I have this time so when we do reopen the economy I’ll be prepared to meet the demand of self healing. Being creative stimulates me and working on things that I enjoy is all more of a plus. 

I am on social security disability and get a check every month. (Thank you God). This is what I’m living on. It’s no where near enough but I’m grateful for all the assistance I’m given. Having my disability check and Medicare with supplement coverage… I feel very secure that my needs will be met, unless my health declines as I fossilize or circumstances change (Who knows, I may win the lottery!)

I’m spending this time on my needs and wants! Investing in my well-being. I’m much less stressed and I’m starting a new adventure. Life after Quarantine. I’m doing things I enjoy that I’ve never had time for. And during this time, focusing on things that make me happy. I’m promising myself that my new hobbies will not go away as the world moves forward and we “open up”. 

My neighbors and I have started a huge garden full of veggies and fruits that will hopefully grow and grow enough food for 7 people. My neighbors are a family 5 than there’s us, a family of two. This garden is about 500 square feet and it’s packed. In addition to the garden itself we have planters full of tomatoes and lots of flowers. I’m in love with this garden!! We spend have spent countless hours on it. To sow these baby seeds, inside, then to anxiously watch them flower until they are ready to go into the ground. I can tell you, at this moment, the garden is ALIVE. It’s so satisfying to see our hard labors come to life. We’ve been blessed with growth, and l hope that continues. It’s something that I love having in my life. 

Here’s something exciting which I couldn’t wait to share is that I’m soon starting physical therapy for my migraines. How cool is that?! And something I would have never thought of. None of my doctors have suggested this and why not? I’m going to try it. My posture is far from good. Yoga this last year has strengthen me and has lengthened my spine. (So yes I’m taller now!) My hips are unbalanced, one shoulder is higher than the other and I carry stress in my neck and back…. this could be causing or at least attributing to the migraine pain. So shit! I’m going to go for it! Why would that not help?

Have any of you had physical therapy for your migraine pain? And if so, did it make a difference? 

An update:

I’ve been on the Ajovy injection preventative treatment since January and it has worked WELL!  Well, not so good these past 3 weeks. It works with my other medication to help stop the migraines from developing. But I’m all too disappointed that this current migraine has broken through. I’m not giving up on Ajovy.

I tried the Emgality injections last year and it had no affect on me. 

I also just purchased a Neck Sling which uses traction to eliminate neck pain and stretch the muscles. It is also suppose to be good for posture and relieves tension headaches. I bought mine on Amazon. I’ll let you know how I like it. 

But I kept the battle going by having continued hope and having a positive attitude to try something else and thus my doctor recommended Ajovy. These past few years has brought much hope for migraine sufferers. We have more choices than ever before. 

Now is the time. KNOW YOURSELF AND YOUR DISEASE. 

Are you thriving or surviving? 

God bless all pain sufferers and for the support you give me by reading my posts. 

Chao for now. 

Sunshine

Ps- the last time I posted I had action steps to do where you determine your top 5 most important priorities? 

Now-look at your upcoming schedule then discover what actions in your future 2-week schedule are not within those priorities. Delete at least one scheduled event. This could be the start of your transition and willingness to commit to a calmer more fulfilling life with your focus clear. 

Migraine pain? Natural remedies and therapies…read here.

A bit of facts to start with…

Migraines are a common problem seen in doctor offices or the ER.  They occur from changes in the brain and the blood vessels surrounding it.

Migraine treatment can include natural or home remedies, over-the-counter drugs, and prescription medications used to prevent or subside the migraine headache pain. 

Migraines are not the same as ‘regular’ headaches, Nor is cluster headaches, sinus or tension headaches. 

If you have a migraine and are trying to figure out what type you have- read below. Or else scroll below to My Natural Remedies. 

Migraine headache, on average, last 4-72 hours and can occur from daily to less than one a year.   Common Migraine, also called absence migraine, accounts for 80% of all migraines. There is no “aura” with a common migraine.  Classic Migraine headache, which is with an “aura” also called ‘migraine with aura’, experience an aura or visual disturbance before as a symptom that the migraine headache is coming on. Classic migraines are much more severe than common migraines.   Silent or Acephalgic Migraine headache is migraine without head pain, but with aura and other visual disturbances and nausea, photophobic (light sensitivity) and phono phonic (noise disturbance) can accompany the aura.  Hemiplegic Migraine is where you feel weakness on one side of the body, loss of sensation, or feeling on ‘pins and needles’. Head pain may not be severe. A Retinal Migraine is a migraine that is accompanied by vision loss in one eye. The loss can for a few hours to months. It is usually reversible but this is a sign of a more serious medical issue and if you have this you should seek care and see your doctor.  A Chronic Migraine is a migraine that lasts for more than 72 hours and 15 days per month.  A Status or Intractable migraine  is especially severe and last beyond 72 hours. Emergency room visits and 1-3 day hospital stays (to manage pain and nausea) are common for stays migraine. Status migraines affect less than 1% of people with migraines. 

I have chronic, status migraines…Lucky F&*cking me.

A

My Natural Remedies and Therapies

After years of being on so many medications, all sorts, every kind in my blood stream and it became flooded.  My brain has changed, my memory is poor and it can be hard for me to focus. As well as prescribed meds, I have developed a repituar of natural remedies and  therapies I can do that will help in some way. I do a lot of these, a lot of time, and others not so often. I feel that the natural remedies I use, could help with decreasing most types of chronic pain. You can use these ideas and customize them in a way that works best for you.

Some of the natural remedies that work for me are:

–  Turmeric supplement- 1200 mg per day (great for any inflammation in the body)

-Vitamin B2- 400 mg (this is suppose to be a big help in reducing migraine pain)

  • Vitamin D 1,000 IU (keeps me from feeling low or stressed)
  • Sun exposure (I try and get 20 min of sun a day, while not wearing sunblock. Sunblock will mostly prevent the absorption of  Vitamin D)
  • Aromatherapy (I use a lavender blend and a Stress relaxing blend which are both very healing. You can either inhale by sniffing or putting it on your upper lip or oils can be taken orally, but not all types are edible so do your research)
  • Drinking stress reducing tea (I sip on Chamomile, Ginger (a natural pain reliever), Tension Tamer and Lavender tea’s…this mix I drink 2-3 a day) 
  • Healthy eating (I consistently try and eat organic, non-GMO, un-processed food, fresh fruits and veggies, wild caught fish high in Omega’s, organic chicken and eggs, nuts and grains. I don’t eat dairy, sugar and very little gluten. 
  • I count chemicals, not calories
  • I use all natural personal products (deoderant, shampoo, toothpaste, soap, lotion, etc.)
  • I use only non-toxic, natural cleaning products and laundry detergant 
These use these products to clean my home
  • I make a Flax seed cocktail to help with constipation, a side effect from pain medications. (recipe for a flax seed cocktail: 2 Tablespoons of ground flaxseed mixed in 8 ounces of water, stir quickly, drink quickly and follow up with another 8 oz of temped water. Do this as you first drink in the morning. Store ground flax seed in the refrigerator)
  • I have a healthy bed time wind-down routine. (You should always turn off electronics 1 hour  before bedtime. I get in my pj’s, have tea, smell and apply aromatherapy, will write a bit and put on my Celfay device which is numbing and helps me to fall asleep)
  • I go to sleep at night and wake in the morning, the same time every day. 
  • I practice yoga 2-3 times a week (have gained 3/4 of an inch in height in just 6 months, from doing yoga. Yoga provides me with over all relaxation and clarity and my brains likes learning new things. It is also social which is important)
  • I practice deep breathing exercises daily
  • I do tapping on myself (repeating out-loud  “I love and accept myself”) 
  • I practice Eco-therapy (being in nature as much as possible-I love long walks or hikes, enjoying the views and animals)
It’s in scenes like this that I feel the most FREE…
  • Being active (If I am having a good day then I try and move all day and this can build the feel good hormones we have)
  • Listening to Affirmations (I listen and repeat ‘Health, Wealth and Lifestyle affirmations’ – available on youtube.com or other apps)
  • I put myself in peaceful soul enriching situations (I go to various church’s to pray, walk the Labyrinth path to pray and set goals, or I’ll visit the Buddhist Stupa to walk and think. Absorbing the positive energy in these places is restorative)
Carrying joy everywhere I go
  • I tie jeans around my head (when I am having a lot of pain I will wrap a pair of thick jeans around my head and tie the legs tightly at my forehead and this creates pressure, which is an aversion to the migraine head pain)
  • I wear earplugs out in public (when I know I am going to be somewhere noisy I’ll wear my earplugs so the noise does not give me a migraine)
  • I wear hats and sun glasses to keep the bright light away from my eyes.
  • I blackout my house (I put cardboard on my windows or use black out curtains to have a dark house)
  • I where a eye mask to bed (this helps me to not wake up as much and it helps to keep me asleep longer in  the morning light)
This helps me to have restful sleep and I sleep longer
  • I meditate in stillness and while moving (I ask the Universe “what is it I need to know” and answers come. I love to mediate while walking or stretching)
  • Celafy. -This is a device made for specifically for migraine suffers. (There is an adhesive you put on your forehead and connect a small electronic device with electrodes that manipulate nerves in your head. This device has been proven to very helpful to me)
Celfay device
  • Sleep or rest (I rest as much as I can and even put rest time in my calendar. When I see it there, that’s what I do; I rest as it’s so critical to decreasing migraine break pain and symptoms)
  • Massage (specifically on neck, shoulders and back)
  • Chiropractic care
  • Energy healing therapies such as Reiki and Acupuncture
  • Hydration (I shoot for 3 liters a day or 100 ounces. I also drink tea, coffee and sometimes     coconut water because it’s great for helping dehydration)
As much as I can
  • Ici (an ice pack on my forehead)
  • *** Lifestyle change*** (this has significantly changed my life for the better, 100%)
You can find this within you

I have had Botox therapy injected into my head and neck and I think that worked pretty well.

None of the ‘preventative’ subscription medications for work me, but Celafy does the trick (it is a device not a medication). celafy.com

These natural remedies I have learned, mostly on my own. If you have tips to help pain and symptoms, you should share them in the comments section. It is important for us to share things that help or or not because most often migraneurs suffer in silence and so much is not-known about migraine disease or ways to treat it. Please share. 

All migraines have similar symptoms such as:

-nausea

-vomiting

-phonophobia or sensitivity to sounds

-photophobia or sensitivity to light

-hyperosmia or a heightened sense of smell

-changes in Vision or aura

Some other symptoms a migraineur may feel during a migraine include:

-Throbbing pain

-Drilling

-Ice pick in the head

-Giddiness

-Burning

-Nasal Congestion

-Nausea

-Vomiting

-Insomnia

-Anxiety

-Feeling depressed

-Neck pain and stiffness

Some of the Prodrome symptoms- those that come before the migraine attack-include:

-Irritability 

-Depression

-Fatigue and stiffness all over the body

-Difficulty speaking and reading

-Yawning

-Problems concentrating

-Dizziness

-Food cravings

-Photophobia

-Increased urination

What symptoms can you feel after the head pain is relieved or has stopped- or called Postdrome symptoms? 

-Severe fatigue

-Diarrhea

-Inability to concentrate

-Depression

-Euphoric mood

-Lack of comprehension

My longest migraine lasted 3 months…I’ll never forget…it started just before my birthday on September 10th and lasted until after Thanksgiving. I missed the holiday celebrations that year but mostly just missed being with my family. For me, after my head pain was gone, I had Postdrome symptoms or what I like to call the ‘recovery symptoms’ for a full month…then life started to go back to my normal life. Well, normal redefined.  

I am pretty isolated here where I live, in Northern AZ. I live in beautiful Sedona AZ however it is 2.5 hours from Phoenix which is where my doctors are and most of the support groups and classes. We have no local news, so I do not hear about trials or see ads for new meds, support groups or here from local activist. I also have commercial free TV, as the commercials were driving me nuts! I’ve had to be creative and learn a lot on my own. Shit- it’s only been since I’ve started this blog that I am now opening up channels of learning from others. For years I was in the dark; literally. 

Trying to survive

If you have migraines or chronic pain, I encourage you to seek out others like you. Join a support group or create your own with a couple of people who can relate to what you are going through. Join with those who have similar struggles. It is important to share information because you never know what could help someone else cope, even if it did not work for you. Share your tips and tricks. Having a support group will help provide you will acceptance of your disease. You know, you are not alone and you will have people to call on when you need help.  Ask yourself “who do I most desire support from?” And create that relationship. Asking for support is often the only thing you need to say..people naturally want to help (well, most people, but not all). 

People want to help you

I would have to say that I was in isolation. One of the reasons I am so excited to write this blog is because it puts me in touch with the outside world. I feel like my story matters and that my life can be an experience that others can learn from.  I have a great life and I am very fulfilled. My disease does not run me, I manage my disease with lifestyle solutions. (I wrote about lifestyle change and how it has worked for me, in my last blog post).

I am in the 1% of migraine sufferers with the worst type of migraines….and I am in control of my life. I am happy with all that I’ve been able to do, while being sick.

Celebrate your small steps forward…and sometimes you have to take 3 steps back. BUT, keep moving forward and discovering all you can about yourself. Be creative and think outside of the box. YOU are stronger than you think you are and YOU are in control. 

Your life is what you make of it. Find joy in things you wouldn’t normally notice. 

Do a pleasurable thing for yourself each day…enrich who you are. People who have a passion and engage in pleasure each day are less stressed and have happier, more content lives.

I learned this long ago and it has worked for me.

I hope today’s post was helpful in someway to you. As always, thank you for sharing this space with me.

Thank you for reading my thoughts

I write with love and care for all those suffering from chronic pain.

Until next time,

-Sunshine.  (my fondest nick name 🙂

Kimberly