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Friday, February 22, 2013

Migraine must have survivalist kit

Step Bench is for my Dog to get onto 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

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 try to make sure that I remember to post my re-usable laminated "Do Not Disturb" sign on my front door so that no-one rings the doorbell and sets the dogs howling and barking!

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! If it were not for a post by Dr. Marcus on Fibromyalgia I would not have known I had a lot of the symptoms-in which I was just recently tested and diagnosed w/FM and CFS.

 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.
 
Until next time remain steadfast in prayer, be happy, healthy and stay MIGRAINE FREE!
Julie
 
 
 
 

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