My Mission thus far to search for Chronic Migraine coping tools to add to my Migraine Survivalist Kit-updated 5-3-13


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Oh the sun. It’s great for normal people but to those of us who suffer Chronic Intractable Migraines seeing the sun is like being set on fire like a fictitious vampire exposed to direct sunlight. The sunrays feel good on your body. but are so bad for the eyes. Making the Migraine attack more unbearable as the pain increases in sharp stabbing pains when outdoors, or even opening the living room drapes. I often feel like a vampire-more comfortable in the dark than outside in the bright sun. Overcast days are good as long as it’s not raining or snowing. We don’t ask for much huh? Photophobia is a common problem with most Migrainers and starts in the Prodr0me stages, but can last through most of the Migraine attack.

Over the past couple of years I’ve tried in vain to find the darkest tinted sunglasses possible to block out the glaring sun. But I have not hand much luck as to date. What appears to be dark-colored lens doesn’t always mean it blocks out that much of the light. I have lost count out how many pairs of sunglasses I’ve bought the past 2 years alone. Maybe 6 or 8? The ones that were just pure crappy I tossed them. The local stores do not have much of a selection to go by, and frankly my budget will not allow me to go to a specialty Migraine eyeglass manufacturer and cough up almost $200.00 for just one pair-and that’s not even RX glasses. So just today I went to Amazon and for around $30-40.00 I got 3 pairs of sunglasses hoping that these will work. They are biker glasses and have foam inside the frames so they fit close to your face and block out the wind. My hope is that they block out as much bright light as possible. So this is the selection of what I ordered:

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61snno8VyxL__SL1000_ Sunglasses for Migraine Survival. Got this pair today 4-27-13. They are not dark enough to block the sun as much as I’d like, but they are polarized so there is no glare.

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These don’t really block the sun that well, but my RX glasses fit inside perfectly and the foam padding makes these fit close to my head and are comfortable. I guess I will keep them.

So we shall see. Hopefully 1 pair that works will make me happy. Two and I’d try to teach myself to do cartwheels, even thought I’ve never done them before in my life and I’m notoriously a Klutz, and that is meant to be with a capital “K”.

I have used on a nightly basis my H2EO Ultrasonic Diffuser with a mix of Therapeutic Grade Essential Oils. Over the past 3 months I have collected over 50 different essential oils and a few books that have recipes and hints for doing your own blending. So I’ve tried my hand out at making my own blends for the diffuser as well as for massage oils.  The model I got is pictured below. It works quite well and has 4 program modes and holds 8 oz of distilled water. When it gets down to 2 oz it automatically shuts itself off. I have a big problem with manufactured scented products, but I have no trouble with essential oils.

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I have the Breo iSee 371 massagers which has been of some help. I’ve used it like crazy the past 2 days. You make it fit as snug as you can stand it and it will puff up with air, heat up and then vibrate to massage the sore temple and eye areas that are common with migraines. I do have to admit it is on the noisy side so if my migraine has me too sensitive to noise I will wear ear plugs. This runs on AC or Double AA batteries. If you use the batteries it’s portable and you can use it on car trips and plug into the base control unit the supplied earplugs to use the music feature. Or use your own MP3 player. The Breo is pictured below.

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I have also received and mixed for FM muscle spasms and pain Veterinary strength Absorbine and DMSO. 4 oz DMSO to 3 oz Absorbine in a lotion dispenser and rub on sore spots. I picked up this hint by reading some blogs. It smells minty and works pretty well although I do not recommend it for everyone. If Absorbine Jr. bothers you then you want to steer clear of the stronger stuff. And this is in no means an endorsement. These are just ticks and tools I’ve picked up to help me ride out my Migraine Storms. I have found this works best for ME than OTC pain liniments.

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I have also acquired and am using the Heavenly Accupressure mat. It feels pretty good to me but I’m use to this sort of thing. For others you will want to use the guidelines, if this is something you wish to try, by using it in 5 min increments and building up time. It is best if you use it on bare skin. I will lie on it for almost 20 min per side and really feel the blood circulating. This helps with the pressure point tenderness and pain and increases circulation.

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For deeper muscle penetration I have acquired and use on occasion The Soft Percussion Thumper massagers. It works deep into the muscle fibers unlike typical massagers and works out the soreness. If the FM flares up too bad and my tender spots on my upper back, neck and shoulders are too sore I cannot use it because it hurts too much. But when my neck and shoulders are really sore from a marathon Migraine I use this and would not imagine using any other type of massagers.

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And for those body aches that won’t go away and the Hot Epsom Salt bath doesn’t do the trick, I have this large heating pad that has a foam insert so you can use it wet or dry. My daughter has taken off with this and I will hunt it down after I’m done with this post.

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Also sometimes during a migraine when I retreat to my room and curl up in bed I take my microwave bed buddy and booties, as at times during a migraine it’s easy to get chilled and besides the bed buddy is great for shoulder tension and pain.

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And I cannot do without my oversized eye mask. Even though I made sure my bedroom is dark, with room darkening blinds, foam backed curtains and dark blue walls and no window in the adjoining bathroom, to a Migrainer in a full-on attack any light, even low light, has to be blocked or the ice pick occipital Migraine will peak at it’s worse (if it’s possible to get worse). So utter darkness is my friend, not my foe. Ironic that as a child I feared the dark. Now I crave it. What a reversal.

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And I cannot do with the most simplest of tools that I found out about by one of my Migraine Blogging Mentors. Plain ole simple Sea Bands. Wear them while I take my Zofran and chew on organic peppermint candy or take a whiff of pure essential peppermint oil-1 or 2 drops on a cotton ball is all I need. I found peppermint works best for me, ginger works best for others.

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Update 4-27-13

I just knew after I posted this I forgot some things that are in my Migraine Home Survivalist Kit. These help me ride out the storm when a Migraine Attack occurs.

My Cluttered Bedside

My Cluttered Bedside showing all my essential Migraine Survival Tools at arms reach

My side of Headboard

My side of Headboard with my aromatherapy diffuser, iPod, and a couple of bottles of essential oil rubs I blended

My Bedside Table

My Bedside Table with my Bedside Emergency kit in tote w/meds and notebook for recording meds taken

My Bedside Table

My Bedside Table Emergency Kit top layer-peppermints for sour stomach, stash of earplugs and saltine crackers

My Bedside Table

My Bedside Table Emergency Kit bottom layer-all my duplicate abortive meds, Rolaids, straws and q-tips, alcohol wipes for Imitrex Injections.

My Cluttered Bedside

My Cluttered Bedside on floor near bedside stand I have my Breo Eye massager, Absorbine, DMSO and the extra bottle contains the Absorbine and DMSO blended ready for use on FM pain or temple/head sore spots.

Top Drawer of my bedside table

Top Drawer of my bedside table contains my collection of Theraputic Grade Essential Oils. Kept in dark cool spot to use in diffuser or make oil blends-bottom drawer contains empty amber bottles, extra nasal cannula tubing for O2 and extra hand wipes and mints.

My side of Headboard

My side of Headboard up on top contains my backups of Migranal Nasal Abortive Spray and extra earplugs.

My Stash of various ice packs

My Stash of various ice packs in the freezer ready for my use. My favorite is the old fashion ice cap very upper RH corner-it lasts longer as the ice cubes slowly melt in the insulated bag and the outside is soft material so I can put it directly over my eye socket.

My Supplements

My Supplements, Minerals and Other Nutritional support for health and for Migraine support

Emergency Migraine Meds

Emergency Migraine Meds-comparison side by side. LH is kit I carry in my purse w/all meds needed for Migraine Abortives and RH is my bedside Emergency kit w/a double of my Migraine Abortive Meds. Pretty expensive to suffer from Migraines.

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I got a Buckwheat pillow for sleeping-after reading reviews it’s suppose to help w/neck pain and migraines. I got this 5-2-13 and already I can tell there is not as much pain as I had before when I get up. It’s a little stiff at 1st but actually has gotten a little more comfortable. I got also on 5-2-13 Badger Stress Soother Balm, Salonpas pain patches and CryoDerm Pain Relieving Roll on. The patches come in 7 pouches that are easy to travel with and they include 20 patches each travel pouch. Size is 2.56 x 1.65 so it’s for smaller areas. Wanted to get some larger ones for shoulder and back but too much $$.

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Today 5-3-13 I got Tiger Balm and Sombra Cool Therapy and Tiger Balm Extra Strenght to add to my Salonpas pain patches, CryoDerm Pain Relieving Cryotherapy Roll-on and Badger Stress Soother Balm.

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I got also 5-3-13 this bigger purse than the original one. It’s roomier and it is definitely the size of a carry-on bag but if I have to carry my portable kit along w/a couple of roll-on gels for pain it’s needed. The other bag went back.

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5-3-13 Inside view of new bag-larger and roomier but hard to tell from this angle. Won’t bore you with more pictures.

These are just a few extra tricks and tools that work for me that I’ve found them along the way. My portable Migraine Toolkit I listed in an earlier blog for tips and tricks I’ve learned to cope with Migraine along the way as it interferes with daily life. I hope you have found some really good tools to help you. Now I’m off to use my Bed Buddy-my neck muscles are pretty stiff from the past 3 day Migraine. So until next time wishing you all a Blessed Pain Free Day and be Happy.

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Blessings

Julie

This is not intended as a Medical site and this does not constitute Medical Advice in any shape or form.

Please consult your family doctor or a medical professional if you wish to incorporate any of these items into your Migraine preparedness toolkit. This is not an endorsement for any of the listed products. This is just the brands I happened to buy that I tried and found to be keepers.

Migraine survivalist kit and tactics


My Migraine MUST HAVE Survivalist Kit  

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(The Step Bench is for my Dog to get on bed)

1. Dark Bedroom (shades closed, curtains closed, door shut, and cell phone shut off-sanctuary in place

2. Several Ice packs (different shapes for different applications all frozen and ready to go)

3. Cool washcloth to wipe off face or place on forehead

4. Bed Buddy (1 for neck and shoulders and 1 pr for feet for microwave, and a few homemade rice packs)

5. Warm fuzzy socks 

6. Warm, loose fitting, comfortable fleece pajamas (or men’s over sized fleece separates-the baggier the better)

7.*1-2 bottles of water for bedside table (I can tolerate water at room temperature better and keep nearby at all times)

8.*7-up at room temperature (room temperature settles better if I need to take w/saltines so I keep one nearby at all times)

9. Ziploc bag w/straws for 7-up

10.*Abortive Medication on bedside table (Imitrex injector pen kit w/refill, alcohol swabs, Migranal Nasal Spray w/portable O2 tank nearby)

11. *AYR nasal gel packaged in small Ziploc bag w/Q-Tips for use w/O2 to keep nasal passages moist

12.*Backup Medication on bedside table (Indocin and Fioricet-experimenting w/herbal Hylands Homeopathic Migraine Headache Relief Tablets)

13. *Anti-Nausea Meds (Zofran)

14. *Sea Bands for nausea

15. *Organic all-natural peppermints (Yummy Earth Organic Refresh Mints, Wild Peppermint-got these off Amazon.com) great for tummy upset

16. *A pkg of saltines (in 2 large Ziploc bags (to keep from going stale faster)

17. Notepad on bedside table to document medication w/ 2 pens and 1 pencil 

18. Post-it notes for spur of the moment thoughts or to-do’s

19. **Box of Kleenex

20. **IPod loaded with soothing meditation music w/comfortable aftermarket ear buds

21. **Over sized eye mask to block out light

22. **Package of ear plugs to use when IPod not in use

23. Electric Fleece Throw (under comforter on top of blankets and sheets)

24. Extra pillows

25. *Essential Lemon Oil (for use on temples only-massage in and on tender points on scalp)

26. *Small package of hand wipes 

27. Small bedside lamp w/dimmer setting or switch

28. Small flashlight to use in middle of night to get medications and document on notepad as to not turn on any lights

29. Picture on bedside table-family members, friends, or scenic to comfort and focus or meditate on (I change randomly depending on mood)

30. A lined waste can (Just in case)

31. Nightlight in bathroom so you do NOT have to turn any overhead or bathroom lights on

32. Cell-phone w/ringer off (we have no land line)

33. Timex watch w/Indi-glow face (emits a soft glow to tell time to write down medication doses so no need for lamp or blaring screen on cell-phone)

34. My glasses (of which without them I am totally blind as a bat when it comes to reading)

35. *Un-scented lip balm for dry lips (seem to get extra dry during a migraine attack and if using O2 w/Migranal)

37. Heavenly Acupressure MAT & PILLOW Combo (got this off of Amazon as well. I use it on the bed as the floor is too uncomfortable)

38. I make sure to try to remember to post my re-usable laminated “do not disturb-migraine in process” sign on front door

39. My bible and Journal if I feel up to trying to read a scripture bookmarked for inspiration and my Journal to write down something positive for gratitude to focus on positives and not negatives

40.  And last but not least, my most important Migraine Med-my little cuddly dog Paco who snuggles and keeps a watchful eye over me when I’m ill. 

*(I keep most small items in a small basket on my bedside table in an organized layout and what doesn’t fit **I have on my little cove on the headboard, all easily accessible. The only things I need to get up and get is the ice packs in the kitchen and re-heat my heat pads in the microwave)

When I first started getting Migraines over 25 years ago the house we had then had a window in it so when we built the house we live in now we customized it and I made it Migraine friendly, which meant NO windows in the bathrooms. A lot of people thought that was strange but I spent a LOT of time on the bathroom floor in the early stages of my Migraine episodes (and still do from time to time) near the toilet, or porcelain throne if you’d prefer to call it that. And also the feel of the cool floor against my head was comforting in a strange way as I made a pallet to lie on as comfort was not the main focus at that time. Little was known about Migraine disease and there were no medicines at that time targeted to abort nor prevent them so it was just riding the storm out the hard way. Earlier in those times my dad brought me over my mom’s Darvocet as that was all she had been given to fight her migraines. Now I know that is a big no-no sharing ones medications but there was nothing for me to take that would take the edge off. 

Thank God they were not that frequent but after a few years Imitrex came out and I went to see my family MD. I was officially diagnosed with Migraines and when I got my RX filled I about had a heart attack as this was a new medication, not yet covered and had to pay full price for 9 pills and it was an ungodly amount of money-almost $200.00 at that time! But by then I learned to add to my arsenal Ice packs for my head and neck as they seemed to favor one side of my head it was a challenge to keep the ice pack in one place. So I moved to the bedroom and tried to make that a refuge. When we designed the house I made sure that the only bedroom window was facing North, so no direct sunlight would come through and that side is mostly in the shade, but any light is agonizing. The bedroom was still too light so I got room darkening curtains and tried to make due. Then I got soft over sized eye mask and that seemed to work. I used an ace bandage to try to keep the over sized ice pack in place, but that was a hassle when it was time to swap out ice packs when the one I was using melted and I needed a fresh one.  Plus sometimes I got it either too tight or too loose.  I cleared all nick knacks off my side table to keep meds handy and a glass of water. Then later on to keep a notebook to keep track of when I took my meds and what the pain level was-I started keeping a pain diary of sorts,  and also a small lamp that was adjustable in brightness in 3 clicks-from low on the 1st click to too bright on the 3rd click. I know have a handy organizer tray on my bedside table to keep almost everything I need in one spot. 

Then I painted the bedroom a soothing dark blue, the curtains a dark blue and I installed room darkening shades to cover the windows, and I call it my little cave-my sanctuary. I have a dark blue comforter bed set and when the bedroom door is shut and the shades and curtains closed it’s nice and dark.  At first I liked the room cooler and had a small fan on the floor for white noise. I searched online and found ice packs that would form to the head but it was a narrow one, but I got it anyway figuring it was better than nothing. Then later on I connected with a fellow migraine sufferer and she sent me a skull freezer cap! Kathy has been amazing and I will not share her full name but that we met when she posted on Migraine.com which I have followed for a few years. I don’t know what I would have done without Migraine.com!

Then I started getting a lot of neck and shoulder pain and found that heat worked better than ice so I had gotten one of those bed buddies that you warm up in the microwave. I also made some of my own out of men’s white tube socks and raw long grain white rice to use on other body parts that hurt and felt raw-back, hip, knee, shoulder, and elbow and in the interim on my neck when I was waiting for the bed buddy to heat up. My daughter got me Bed Buddies Heat warmers for the feet. Wow, do those feel great. And I am once again a big fan of over sized loose fitting fleece pajamas. I don’t care what the size label says anymore-the bigger and looser the better. Anything that is constricting adds to the discomfort. Even in the summer I am too sensitive to the temperature and now I found out why. I also have Fibromyalgia and Chronic Fatigue Syndrome. That would explain the muscle spasms, sensitivity to temperatures, chronic fatigue and maybe the daily chronic Migraines. But that is a different story for a different time. I cannot do aromatherapy but I found that lemon oil was suppose to be good for migraines after researching online so I got some and apply it only to my temples and tender spots on my scalp and neck. It warms up and does something-I cannot explain it, but it smells fresh and doesn’t overpower and I can tolerate it. I cannot tolerate lavender oil as it is too overwhelming and for those that are the same way try lemon oil. I have read that eucalyptus and rosemary essential oils are good for sore aching muscles so I might try those at some point down the road. 

I turn on the fan and point it away from me now, but the white noise helps drown out any noise that goes on the other side of the door and through the house. I will pop in my ear buds and turn the volume on low and play soothing meditation music and focus on an object in the room-picture on table or wall or maybe a statue and meditate. Sometimes a 7up will help the stomach instead of water and saltines. When it gets bad eating solid food is out of the question and I know they say not to skip meals but come on! When you’re so sick you cannot keep anything down the last thing on your mind is food. So I try to Zen out, chill out and replenish my ice packs as needed and reheat the hot pads also. If I’m home alone that means I am disrupted a lot. If I’m not then I can ask for help when others are in a fair mood. I try really hard to focus on the positive and when others around me are negative I still try to maintain a positive attitude and if I find it hard to do I focus on trying to block it out because negativity makes the pain worse. I found that out by concentrating on it and focusing on it and realizing that it was true. Being positive does not take away all the pain but it makes the burden easier to bear and being negative or around negative people not only brings you down it magnifies the pain. So meditation and chanting a mantra on staying positive helps and working really hard on keeping that up, and I cuddle with my little dog Paco who turns into a little nurse aide and he keeps a watchful eye on me when I’m ill. He will not leave my side and is extra cuddly and affectionate and gives me the unconditional love that I need the most to help me endure and pull through yet another bad spell. 

If my migraine lets up some to where I can semi-function I will get out my laptop or tablet and connect online to get a pep-talk of sorts. But that is only when I’m up to it because sometimes, well most of the time, when I get online I don’t know how to cut it short. I start seeing topics or conversations and I get carried away. Or I think of something I want to search about and before you know it I have a lot of pages bookmarked that I have to check out later when I’m functioning better. I try really hard to keep technology out of the bedroom as it’s suppose to be a sanctuary, but once in a while I break my rule. That is something I’m working on really hard. I have to admit last week I did really well and I did not take them into the room with me, so I’m making some progress there. But this is how I survive my Migraine episodes. Some of these I picked up on my own by trial and error, some from blogging with others on Migraine.com and from other bloggers. 

I hope I have something in my “Kit” and “survival tactic operations” that might help someone else. This is how I stack and prepare my safe zone as I call it-to feel like my sanctuary to ride out the storms and have most of what I need at fingertip reach. Looking into a very small freezer for bedside, but not very practical at this point, but my ice packs would be a lot closer-not that it kills me to go to kitchen except if the lights are too bright. We have a skylight in the kitchen ceiling-that was a bad idea-and a lot of sun comes through it. 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.