Things that help me

So, I think for most people with this condition the headaches and daily pain tend to be some of the worst symptoms to deal with.  After living with this condition now for several years I have figured out a few things that have helped me manage and cope with this horrid condition better.  I hope some of these will be helpful to other people.  I am also hoping that this can be a place where other people can share things they have found that help them.  These are in no particular order, but I have listed my most commonly used ones at the top.

• DISTRACTION--if the pain is "tolerable" but still enough to make me uncomfortable I have found a few things to distract myself so I am not thinking about the pain.  This includes many activities such as reading a book, playing with my kids, watching TV/movie, playing a game, cross-stitching (I am terrible at crochet and knitting, already tried.) 
• MEDITATION--I know this sounds corny, but this has actually helped immensely.  I highly recommend a book called Full Catastrophe Living that taught me how it works.  It has helped many people that live with chronic pain. The book recommends doing it for 45 minutes per day, but this is the real world, I have twins to keep up with, 5 minutes sometimes is enough for me. 
• EXERCISE--I have found when I get regular exercise I tend to do better.  Sometimes just going for a walk actually makes me feel better.  It is hard to go exercise when you feel terrible all the time but you just have to find the motivation to start because it does get better.
• MEDICATION--I am not a person that likes to take medication, I try to use other methods if I can, but I have learned that sometimes it just cannot be avoided.  When this first set in, I didn't really understand how pain medicine works, specifically narcotic pain medication.  I was paranoid about becoming addicted to it, and only took it once the pain was completely out-of-control.  This lead to repeated ER visits because the pain got so bad that I couldn't control it myself and was so dehydrated that I needed IV intervention.  To add to the confusion, I also get a regular migraines which do not require strong pain medication and will usually be taken care of by regular Ibuprofen, but left untreated can become much worse.  Sometimes it was hard for me to know what medication to take.  Over time I have learned how each of the headaches typically feel, and likely what it will respond to.  If I am not sure I usually try the Ibuprofen first and if it does not respond at all, then resort to the strong pain medication, but now I don't wait until the pain is 10/10 to do something about it, and I have since kept myself out of the ER.   Now I rarely need strong pain medicine, which I am very happy about.
• ICE--so while this does not really treat the pain or eliminate it, sometimes it will take the edge off until the pain lessens. 
• WARM BATH--This tends to help relax my muscles if I am having a particularly achy day.
• SLEEP--This is more preventative.  If I don't sleep enough, I definitely have more headaches.
• HYDRATION--Also preventative.  It is extremely important for me to maintain adequate hydration, and not let my fluid status shift rapidly. 
• STAYING UPRIGHT DURING ACUTE HEADACHES--this seems a little weird but I have learned that I absolutely can't lay down and try to go to sleep if I have a severe headache, this only makes it worse.  Yes, there have been nights I am still awake and attempting to sit up at 2 AM because I don't dare go to bed until the headache subsides.
• PILLOWS--I sleep with my head elevated and avoid laying down flat at all costs, especially for extended periods of time.  My husband likes to playfully tease me for the 7 pillows I have on my bed, but it is worth it!
• AVOIDING CONSTIPATION--(I apologize in advance if this makes you uncomfortable) Straining to having a bowel movement increases CSF pressure even more, and can lead to other health complications besides.
• AVOIDING HEAVY WEIGHT LIFTING--I try to avoid lifting anything heavier than my children if I can possibly avoid it, and sometimes that is too much.
• TIGER BALM--Sometimes this is helpful if there is a specific place that is in pain, be aware though, it stinks to high heaven!
• LOW TYRAMINE DIET--This does help me to some extent if I can stick to it.  I have talked to other people that swear by it. 
• PROPHYLACTIC MEDICATIONS--I was on Diamox for over a year but ultimately stopped using it because the side-effects were so severe (I tend to be very sensitive to medications.)   I have been fortunate that my condition is now not as severe as it was initially, and I can usually manage it well with my other methods.