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Author Topic: Post Transplant Headaches  (Read 2778 times)
SooMK
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« on: November 04, 2015, 07:46:42 PM »

I'm about a year and a half post transplant taking tacrolimus and myfortic. I have had the usual laundry list of annoying problems but only one that is starting to get to me. Every two or three weeks I get a headache that lasts 8 - 48 hours. Sometimes it responds well to Tylenol and sometimes not. Sometimes it starts at night. Frequently it continues throughout the night so I sleep but it is this weird sleep, filled with headache pain and dreams. I can function and carry on with every day activities (although it's not easy) so I don't consider them migraines. My neph believes it's a side effect of the meds. This last visit he prescribed Gabapentin to take at night to help me sleep which he thought might minimize or eliminate the headaches. When I came home I researched this drug and thought it sounded kind of scary so I didn't take it this week when I had one of these headaches. On a previous visit the neph asked if I'd tried acupuncture. I've never had any experience with acupuncture but I couldn't imagine how this could work. Do you have to wait until you have the headache and try to get an appointment then? Or can they treat a headache that you aren't currently experiencing? Anyone else have these kind of headaches and found any relief?
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Michael Murphy
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« Reply #1 on: November 04, 2015, 09:16:10 PM »

About 10 years ago I suffered through almost continuous headaches for two years.  I occasionally get migraines and I began to take a lot of he'ad ache medicine mostly October stuff.  The headaches got worse and I started on imitrex my insurance only paid for 6 doses a month so I used them sparingly t
He pain was so bad the the doctor gave me a mild narcotic.  Problem was I would run out a week before I could refill the prescription.  Finally the pharmacist saved me I went to refill early and she told me no and that I may have rebound headaches.  I was miserable for about 2 weeks then amazingly my headaches stopped.  I had rebound headaches my body was so used to NSAIDs that it would respond with a headache if I hadn't taken any.  I still get the occasional migraine but now if I can I just go to a dark room and go to sleep if I can't do that' I rotate between aspirin and Tylenol and try to do without.  The end result is I am almost free of headaches today.
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iolaire
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« Reply #2 on: November 05, 2015, 06:37:48 AM »

On a previous visit the neph asked if I'd tried acupuncture. I've never had any experience with acupuncture but I couldn't imagine how this could work. Do you have to wait until you have the headache and try to get an appointment then? Or can they treat a headache that you aren't currently experiencing? Anyone else have these kind of headaches and found any relief?

Maybe ten years ago my wife had problems sleeping through the night (not headache caused).  After doing a few rounds of sleep studies including one for Ambien she visited an acupuncture person and after that her issue was basically resolved.  We might not have noticed at the time that the acupuncture person solved her issue, but looking back we realize that was the turning point.

So my recommendation is that if you can afford it there is no reason not to go to the acupuncture person and give it a try.
« Last Edit: November 05, 2015, 06:39:55 AM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
SooMK
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« Reply #3 on: November 06, 2015, 05:36:38 AM »

Thanks Michael and Iolaire. I may give acupuncture a try. And it's good to know that it might be possible to reduce the number of headaches I get.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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