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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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Visitors and Migraines

It was wonderful to see Dianne Clone this morning unfortunately it would have been better to meet up under better circumstances. Wayne came into the hospital yesterday and is just 4 floors below me so I got a visit and it was wonderful.

Dianne Clone It was wonderful to see you today & pray with all my heart that they have found the right med. we are actually getting home – the AFIB med was low dose so didn’t need to spend 48 hrs being monitored. PTL Enjoy your boys, sleep well & hopefully you get to go home tomorrow.

Heather Loose Johnson Great news Dianne! Thank you Joy! Too bad all the commotion of the evening spiked a headache with a vengeance. . At least there is a med that might knock it back down. Now just to get neuro back in to check on me to give that order. I have decided..headaches suck

And now I am looking forward to a visit from my boys. I have missed them a great deal over the past 2 months but especially when I am in the hospital. At least when I am home I get lots of hugs from Gideon. So I am looking forward to their hugs. And to seeing Dan too of course  I am also looking forward to another visit from Melinda Richmond. She had been a lifeline while I have been here. It us so wonderful to look back over our friendships in the ways we have been there for each other.  I will be ready to sleep tonight for sure.  Oh and we think we found a med that may have knocked out the headache. Fingers crossed! Hoping to go home tomorrow if pain continues to diminish.

It was good to see my boys!!!  Unfortunately all the commotion resulted in a very bad spike in my migraine. Good thing I got to see them before it started.

March 11th

Abortive medications are not working…Keppra is not working….Elavil is not working.

 

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And “The Plan’s” Begin: The Plan v 1.0 – Sparrow Hospitalist

The last 24 hours have been horrendous…no pain meds at all, only the magnesium.  Oh and in the midst of this horrendous pain, they decided to do the MRI.  MRI + Massive Pain = severe anxiety and no MRI.  As I sat waiting for my turn in the MRI I began have a panic attack because I knew there was no way I could possibly make it through…my nurse finally came down and pumped me full of morphine.  It was as if I could feel all of my worries and pain melting away.  I made it through the MRI and brought me back to my room.

A neurologist finally came in and laid out a plan to treat the rebound headache.  And so it begins. They have given me the first round of medicine, Topomax, to treat this, what should I call it, shitty headache. I’ve been told that the side effects could be interesting. For example my nurse who had also taken this medicine told me it made her stupid. She would order food at a fast food restaurant, go to pick it up and wonder who ordered it for her or she would get up to go to the bathroom and couldn’t find the bathroom in a one bedroom apt. so this should be an interesting next couple of days.

They tell me it could take 2 to 3 days for this medicine to work, if it works, and if it doesn’t work they try something else. so it looks like I will be in here for a little while yet. On a positive note and even though I feel bad, I am really happy that my mom and Bob are coming home. When I was going into the MRI and was in so much pain all I could think was ” I want my mom” and now I get my mom. Up until today Dan had been so sick he couldn’t come up to the hospital.  I was so glad that he was feeling well enough to come visit today and bring me a few things from home. I am so thankful for such a supportive family and so many supportive friends I love you all and thank you for all you’ve done including all the prayers. I’ll try to update again tomorrow.

feb 16th meme