Yay! Pain is Fun!

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My nerve block from the end of May is wearing off significantly, and I am in pain. My face is very sore, making eating and speaking uncomfortable. The back of my head really hurts, traveling down my neck into my shoulders. I’m trying to be as calm and relaxed as possible. I think this will mean avoiding people for a bit. I’m very much an introvert, and I am quite sensitive. Knowing this about myself helps to make good decisions about setting boundaries. I’m not exactly great with boundary setting, but I need to work on this for my own health.

I tried the Cefaly on cycle 2 and found it surprisingly gentle. Almost more gentle than the gentle cycle. Electrode placement is so important. I’m now doing two cycles a day. It is helping so much. I’m still lying in the dark, but can watch TV, so am not bored too much. Using a tablet is tough for too long, and my vision is quite blurry.

My digestive system is very grouchy. I hope I see that GI doc soon. So uncomfortable. I found some exercises for my pubic bone online. I will try those starting Monday. I don’t want to hurt myself knowing we are going to the Banksy exhibit this weekend.  My first non-doctor outing in a year!

I approached my doctor about a breast reduction also. I don’t know how likely, but I am so uncomfortable all the time. I have sores, I can’t wear a proper bra because the band hurts my stomach. The straps even of a bralette dig into my shoulders. Despite the EDS, I have had 10 surgeries, four non-keyhole, and only one took a bit to heal because it was at my waistband.  Maybe? I sent an email afterwards, so we will see. The EDS clinic doctors seem super nice!

So, I am waiting for my treatment to begin, essentially. Saving my energy. I feel like garbage, but I have felt worse. I need some me-time. I’m pretty exhausted from trying to be social. From trying to make friends, from battling sheer assholishness. Putting up walls for people who refuse to accept boundaries. I didn’t realize it would be this much work to explain and explain again things that seem so simple to me. Like, please don’t ring my phone repeatedly after 9:00 PM because you feel chatty. Or ring my phone repeatedly at all. Or write nasty comments on my Instagram page because I haven’t returned your DM. You can see me writing about chronic pain.

I’m tired.

Happy Pride Month!

🦓

Cefaly at Two Weeks

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My approximation of the box pose, only more ‘me’

Along with getting rid of my chronic case of tech neck, I am dearly hoping mid-July’s Botox treatment will give me the pain relief I seek. The last doctor treatment for migraine (or anything, actually) was May 28 when I had the nerve block. Over time, my facial pain, the pain in the back of my head that radiates down my neck and into my shoulders returns as the day wears on. On the plus side, I can sit up for ages before becoming dizzy. I usually become sore first. I have several lamps now and aim them all over the place at various levels to limit pain. Noise levels are still problematic.

Anyway, The Cefaly.

There are two types of Cefaly units. The US one, and the

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The Cefaly Box

Canadian and rest of the world? European? one. From what I understand, the US model has one speed and an allowable wear time of 20 minutes.

My model has three speeds 1. Active Headache 2. Prevent 3. Gentle and is allowed to be worn all day. (The website at http://www.cefaly-technology.com explains all this).

Included in the box is a set of electrodes, (3 maybe? My husband ordered a whole bunch so I got confused.) And some forehead wipes.

Cefaly works by cleaning your forehead with the wipe. Bioderma is the closest sub for this. It must be non-oily. Next you place the provided electrode (powered by 2AA batteries, don’t worry) on your forehead. The brochure will describe this, don’t worry. Mid forehead. You then slide the lovely Wonder Woman Headband down your head until it engages with the electrode. Press the button on your WWH until you get your program. (In US this is ONCE). Enjoy your 20 minute treatment. Repeat if desired, unless American. Lowest price we found in Canada was $299 at Costco.ca.

I am fortunate to have the gentle cycle, because I am very sensitive to TENS! Yes, I had no clue this was TENS at all. I had used a machine once at my grandmother’s house once about 25 years ago and it was so incredibly painful.

The first time I used it, thoughts I had included:

“Dear God, I hope this thing shuts off eventually. What if it doesn’t?”

“This feels like Dave Grohl playing timpani on my sinuses!”

“Did I buy a home ECT (electroconvulsive therapy) machine by accident?”*

*(I had a family member go through this treatment several times, we discussed it,  plus the awful scene in cuckoo’s nest, I understand it was a very mild situation.  My brains were being scrambled, and I was getting scared. That’s where my weird mind went.)

But I endured. The next therapy I needed to stop about 5 minutes in. It was just too painful. My husband complained of a headache that evening, so it was time for an experiment. He got to wear the band. He couldn’t feel anything! I couldn’t believe it.

 

The next time I used Cefaly, I sat up and carefully applied the electrode supplied, to my forehead using a mirror to judge the best spot midway between my eyebrows/forehead ridge and the start of where my forehead curves. This session was so much less painful. It still hurt, but was much better.  This time I noticed how much better I felt after the session. I had about 10 minutes where I felt I still was wearing the headband, and I was kind of scrambled for a few minutes, like waking from a nap. My shoulder and neck pain was so much better, and my facial pain was from a 6 to a 3 or 2.

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Electrode Placement is Very Important

 

The next three or four days were tough, as I had excessive sleeping. I would lie down for a quick nap, planning to wake around 5 for dinner, do my therapies; and wake up the next morning.  I’ve done sessions over the last three days, still on gentle. However, now the painful part is only a couple of minutes and I tend to fall asleep for the last part of the session. The damn beeping to signal the finish always wakes me. I’m thinking of going up to level 2 soon.

 

  • Having your electrode placed properly is very important. Use a mirror.
  • I found having the TV or something on is helpful to pass time or distract.
  • Bioderma is a fantastic substitute for the included wipes. I have not found a distributor. Alcohol is too drying and will degrade your electrode pad.
  • Just press the button for emergency stop. 
  • Two AA batteries.

 

At this point I am looking forward to my afternoon sessions. It’s like a challenge.

The fantastic part is my insurance reimbursed us for it. Yay!

Verdict: Even though I am sensitive to TENS, this product is highly effective in reducing and treating my headaches. Where I would expect to be useless, I can take a treatment and after 20 minutes my pain is seriously reduced.  I’m amazed.

I will keep you posted!

 

My brain…. molasses or something.

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I am in excruciating pain. My pubic bone and my back are at war. All my fingernails are squishy, so many just tore I ripped them all short. I am taking vitamins,  but I need to sleep again. I can feel the nerve block being gone. My face hurts just so much. It’s not so bad first thing when I wake up, but as the day progresses,  the pain gets worse and my spelling, vision and coordination also deteriorate.

I need to hang on to mid July. Whee! I am working on Cefaly first impressions, but this flare up, which I think was from deviating from FODMAP, actually.  I had some not gluten-free snacks. I think that is my kryptonite. One snack has molasses, and I can have 100 g with no issues. But gluten is out of bounds for me.

My memory is horrible.  I can’t concentrate on anything or think at all. Is it the pain or medication? I don’t know. I am trying so hard. You can tell it’s bad now.

Love.