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Lunch with a fellow Migraneur

Though our time always flies when we get together, I am so thankful to have found someone like me, a Migraneur. Carrie has been there with me and I with her over the past year through the bad times and any success we achieve.  I feel so blessed to have her in my life. 

Today we had lunch at Riverside cafe in Eaton Rapids. Excellent food!!  And great company. It is always nice when our “good days” align. 

My Rueben and fries. Delish!!!  

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Reaching out to Fellow Migraine Sufferers

One more night at the hospital. Though they have done all they can for me, I had a tough night last night and again this morning both points when the medicine had worn off. I haven’t talked with Neurology yet
today but my thoughts are that the meds are acting as a band aid once again and they haven’t found something to actually resolve the headache. I am not sure where I will go from here except home tomorrow.

Heather Loose Johnson: Ruthanne Ovenhouse could I get your contact info? I know your daughter is a serious sufferer of debilitating headaches. Has anyone else out there had success at clinics with chronic headaches like Mayo or Cleveland or U of M. I don’t think my journey is over with this headache and while the extra day here is good comfort wise I don’t think there is anything more they can do.
Ruthanne Ovenhouse: They have a pain specialist scheduled to meet with me tomorrow to talk with me about injections .  You just never know. The neurologist was afraid they probably wouldn’t work because all of my pain is in the front and top of my head but also thought it was worth a try.  Oh I have been praying they could help you because I haven’t wanted to share with you all of Carrie’s disappointments on this journey of over 6 years. She does seem to be having more good days but she deals with another debilitating issue also. Why don’t you pm me your phone # and I will give it to her. That way you can talk or text. You can be sure I will continue to pray for relief for you.

Conversation with family Robin and Rick Wood:

Robin Wood: Heather you really should ask about injection at the base of your like my son Rick had. Took a couple of days before it worked. He had a headache for over six months. Has not had another.
Heather Loose Johnson: Rickandmegan Wood who did you see for your headache and what kind of headache were they?
Rick Wood: They figured mine was a nerve in my neck somewhere but they weren’t sure exactly where was they sent me to a pain specialist but since I AM on blood thinners they wanted to try a different approach so she gave me like 7 injections in the back of my neck and skull about 3 days to a week after the injections and all the sudden I woke up and it was gone haven’t had one sense they tried a bunch of medications before that nothing worked and it was a Henry Ford Dr I will have to get you the name a neurologist.  By the way it was the worst six months of my life hope your headaches go away soon Heather Loose Johnson: They have a pain specialist scheduled to meet with me tomorrow to talk with me about injections smile emoticon. You just never know. The neurologist was afraid they probably wouldn’t work because all of my pain is in the front and top of my head but also thought it was worth a try.
Rick Wood:  That’s exactly where mine were so they so they wanted to do the nerve block they were just going to block all those nerves going through your neck but they didn’t they ended up giving me some kind of cortisone and something else and my whole head face and everything was numb for about 6 hours and after that the headache came back like I said for about 3 days to a week and then they were just gone
Heather Loose Johnson: Here’s hoping and praying Rick!!!
Rick Wood: I know exactly how you feel.  Mine were constant from the minute I woke up does a minute I want to sleep all I want to do is lay around or something over my head and try to sleep
Heather Loose Johnson: Sounds about right. I’ve been in bed for 4 weeks straight and was in bed for much of the 3 weeks prior on and off. I wonder if we have a genetic predisposition for this type of shitty headache.
Rick Wood:  I can imagine it was. I am at 48 days with 3 pain free days.

 

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No more IV…Yay!!!

I got my IV out!! Yay!!!! Ok so I am thankful for little things. It was in my right arm so it made everything a little more difficult. I am feeling quite a bit better today but the headache remains ever stubborn. The new meds have given me slight reprieve and for that I am truly thankful. But the best medicine of all was the paczki from Roma Bakery. I was just as surprised as you that my Dr would order such a thing but thankfully my friend Stephanie Jordan got the memo. Hoping to continue on this road to recovery.

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Paczki

I wonder if I could order a paczki from hospital room service?

Responses from FB

Stephanie Jordan Are you up for visitors?
Rebeccah Burns I’m pretty good at smuggling things into hospitals . .. . probably could talk Kevin Shoemaker into being
convinced that is part of my job for today!
Heather Loose Johnson Yes today I am feeling much better.
Heather Loose Johnson Lol. Too funny. Not sure I should actually eat one since the only activity I have had since Friday is walking to the bathroom:)
Stephanie Jordan If someone were to pick you up one, what flavor would you like
Rebeccah Burns I approve of your hypothetical question, Stephanie Jordan!
Stephanie Jordan So are you smuggling her one or should I Rebeccah Burns
Vicki Kuhlman Johnson I love this thread
Heather Loose Johnson The anticipation is killing me . Haha!!!
Stephanie Jordan Got her a strawberry on
Heather Loose Johnson And it was fabulous!! Just what the Dr ordered I think
Rebeccah Burns You must have the BEST, SMARTEST dr around

Feb 17th

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Rebound Headache

Valentines Day!  What better way to spend the day than to spend it with people waiting on you hand and foot.  I got a Valentine Day card this afternoon.  The doctors decided to admit me after doing an MRI and running a bunch of blood tests.  They decided that I have a rebound headache.  Apparently when you stop all over the counter and narcotic medication all of the sudden you can be left with one of the most horrible headache ever.

Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.”

So they stopped any and all pain medication instantly and started me on Magnesium for 24 hours.  The pain was the worst pain I had ever experienced.  The photophobia was horrendous as well as the phonophobia.

“Photophobia is a symptom of abnormal intolerance to visual perception of light.[1] As a medical symptom, photophobia is not a morbid fear or phobia, but an experience of discomfort or pain to the eyes due to light exposure or by presence of actual physical sensitivity of the eyes,[2] though the term is sometimes additionally applied to abnormal or irrational fear of light such as heliophobia.”

“Phonophobia is an anxiety disorder, not a hearing disorder. Phonophobia is a fear of loud sounds. Phonophobia is also called ligyrophobia. The name “Phonophobia” originates from the Greek words for sound and fear.”

Today I learned many new terms and discovered that head pain could really be that bad.

But today I also felt like a new woman for about five minutes and it was fabulous. A huge shout out to my friend Dawn Tomlin for bringing me toiletries so I could shower and brush my teeth and balloons too. It looks like I’m going to be here for a at least a couple of days as they try to both determine the source of the headaches and to control them.  Thank you for all of the prayers and please keep them coming.  Tonight’s probably going to be a rough night as the first step in trying to find a new medicine to control the headache means eliminating the pain reducing medicines.

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Clean Hair!!!  It is a wonderful thing.

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The great feeling of the shower only lasted for about 15 minutes, but it sure did feel good to be clean.

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Phone a Friend or FB a Friend

  • Me: So I am at a point where no change maybe a little more pressure in my face. Narcotics are just making me sleep and be nauseous and throw up. I am trying to figure out if I should wait for family dr to open tomorrow, call Urgent care (which probably isn’t open today) or go to ER. Do you and Steve have any advice?
  • Kristen: Steve’s at work but will message him. How long ago did they give you the epi and steroids? He said you often get a killer headache after that especially if you had more than one dose. Personally, if you are that miserable I would go to the ER. But would chose either primary care or ER. Urgent care will be limited in what they can do. Primary is at least likely to refer you to ER if that’s where you need to go to stop the cascade.  Does it feel like sinus pressure? Or is the pressure more like in your veins of your neck? General pressure? If you’ve had a migraine before, does the headache feel like that or different? Light sensitivity? Nausea other than from pain meds? Heat or cold improve? Is your neck clamped down like a tension headache?
  • Me: Sorry. I was sleeping again.

    Timing of it all: Wed Jan 21 is when I received 2 epi shots (one was not enough to stop the reaction) a steroid shot and benedryl. I started prednisone the next day for 6 days with a step down prescription of 3 for 2days, 2 for 2 days and 1 for 2 days. That ended the same day the headache started.

    The pressure is in two places throughout my sinuses but not like a sinus headache. Sensitive to light, blurry vision and nausea at times. The clamping down seems to be a better description of what the pressure does to my face. Heat seems to bring comfort but not sure it actually brings relief. Trying ice right now. The second location of the headache is at the base of my head in the neck. Very much like a tension headache but with pressure pain instead of piercing pain. I have had a migraine before and this is more like what is left after the intense pain that I get. The pressure pain is constantly there sometimes with more pressure in my face than others. But it is always there.

  • Me: Ice made it much worse
  • Kristen: I will pass that on to Steve. I think it is too far out to be directly related to the epi. Sort of sounds like you have a combo cluster migraine/ tension headache. Personally I would go to ER to have eval and see if they can break the cycle. They would prob start with fluids and the headache cocktail and move from there. You can also get rebound headaches from narcotics

  • Me: Yah. That is what I am thinking too. Wish the roads weren’t so bad. Hope Steve has a safe drive.  I would go today but no one to watch the kids. Tomorrow we can have day care watch them.

  • Kristen: Yeah me too. I’m thinking he isn’t going to make it home tonight at this rate. He took stuff in case he has to overnight in the staff emergency shelter

  • Me: Yah. Probably a safe move.

  • Kristen: Steve said prob migraine/tension. If you don’t want to go in with the roads, try 600 mg ibuprofen plus 25-50mg Benadryl (only if it doesn’t make you hyper). Otherwise, if you prefer tylenol, you can take a single 1000 mg dose. Just make sure you don’t repeat it for toxicity. If you happen to have a muscle relaxant or anti-anxiety, take that as well. Effectively the 1st line headache cocktail – ibuprofen, Benadryl, and relaxant.

     

    Hope you feel better