Does anyone get headaches daily?  Ever since surgery I've had a nasty headache every single day.  I told the doctors time and time again.  I get the same thing....don't take anything but tylenol.  Tylenol does not help at all.  So, they gave me fioricet.  Which hardly takes the edge off but does make me loopy so I don't care as much that I'm in pain.  Its has an effect similar to being buzzed and I wake up w/ a nasty headache like a hangover everyday, fioricet or not.  When I first got out of the hospital I was on codeine/tlenol.  That stuff worked great.  Not only it took my headache away for days, it made me feel better about life because I didn't have any pain.  But, of course it had to end.  I can't be on that for  a long time.  It was affecting my brain.  I was very forgetful and felt like I was becoming addicted to it.  All I could think about was when I could allow myself to take another narco.   So, I stopped.  I still think about it though, not a day goes by that I don't want some.  I like to say that I want it because its the only thing that I've found that takes care of my headaches, but thats now, and I'm sure if I were to go back on it, I'd feel the addiction pull again.  So, as my coordinators say, I'll just have to suffer through it until the meds are lowered and the side effects decrease.  Oh, well.   Another sleepless night filled with wishful thinking of blowing off my head to stop the pain.

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Comment by Emily on March 29, 2011 at 8:28pm
I finally got myself into a neurologist last week. I had an MRI done....havent heard the result, but they put me on topamax and said that it sounds like I'm suffering withdrawl symptoms of being on dilaudid for a month in the hospital and hydrocodone a month or so after i got home....I don't know. They give that stuff to everyone they said. I stopped taking the codone and didn't have any other problems except my headache and I'd take one and it'd go away, simple as that...

The topamax keep the headaches at bay....they come and go sometimes they are bad, sometimes not. Sometimes they can be controlled with Tylenol. It makes me anxious and jittery and erratic. It makes me spacey and confused and irritable and I say random stuff and get defensive sometimes for no reason. We will see. I just want the pain to go away.
Comment by Matthew J Litkie on February 27, 2011 at 4:47pm

Many Great Dr.s have told me "You can't get addicted If you are in pain''


Tylenol is hard on your Liver, they say do not go over 1200mg pr. day.

Some people take Ox. strait 5mg (no Tylenol)


Comment by NICHOLAS MARINO on February 19, 2011 at 3:37pm
Emily, I do beleive that the headaches are being caused by the lack of sleep. I hate trying to go to sleep now, because I know no matter how hard I work, or how many hours I will be blessed if I can get 5hrs p/nt. It is really getting annoying and I know physically it is not good. I am starting to get irratated at the drs. @ the clinic for just brushing this issue off and telling me to go to a psyciatrist. Such a waste of medical costs for something that is being caused by imuno-depressant medication. The problem that I have is my primary Dr. wll not do anything that the transplant center dies not okay, so why even have a primary Dr at all, other than once again more medical costs+ another co-pay. I am getting disgusted. May switch primary and not tell him about transplant. It is a drastic move ,but options are limited and 8hrs would be a miracle.  Take Care,  Nick
Comment by Emily on February 19, 2011 at 1:12pm
thanks allie.   I call them headaches, but i assumed they were migraines because they don't go away and im extremely sensitive to noise when i have them.  Fioricet doesn't work, but codene did.  I am seeking out a neurologist in the meantime to see if anything else can be done.  I never heard of gengraf i'll have to ask my doctors about it.
Comment by Allie on February 19, 2011 at 9:58am

Hi Emily,

I also had a heart transplant and started having what I thought was just headaches.  Pain killers will not take away the pain of a headache-so you may be having a migraine (I have both headaches and migraines-a migrain is a nerve pain and even narcotics don't cut the pain).  Part of them were caused by Prograf, so I was switched to Gengraf-which for me has worked soooooo much better!  The other thing that I did was see a neurologist that specialized in headaches/migraines and he started me on a new medication that I take twice daily to prevent the migraines/headaches (Topamax/Topiramate) and when I get a migraine I take Epimidrine-it works pretty well-but can take 4 hours to work.  So far I haven't found a miracle drug for me, I just kind of muscle through the pain. 

Hope this helps! 

Comment by Emily on February 18, 2011 at 11:41am
Ya i had the shakes and nasea for a few months from the cellcept and prograf as well, but it went away.  I'm still on prednisone 2x a day, when i wake up and before i go to bed.  It does cause sleeping problems and bad night sweats, which i was told was related to the hormones.  They are lowering the dosage gradually, next change is in 13 days, can't wait.  I normally take two fioricet, but I normally don't take them during the day because they make me too loopy to drive.
Comment by Kathleen Taylor on February 18, 2011 at 10:33am

Have you asked your doc if you can take 2 Fioricet?  (one does not work for me)  Also, if you are waking up with the headache, it still could be low blood sugar at night.  You are right the low blood sugar feels different (shaky, sweaty, etc), but it can trigger a headache.  The key is taking the pain med right away, even if you have to get up in the middlle of the night.  Also, have a protein snack before bedtime.

I am on a steroid free regimen (Cellcept + Prograf) and the only side effects I had were nausea and vomiting from the Cellcept and shakiness from the Profraf, all of which went away after they gradually lowered the meds. 

Steroids definitely affect your hormones, and headaches can also be hormonally related, it wouldn't hurt to ask you doc about trying something other than the steroid.  Also, if you are on prednisone, which can cause sleeplessness, are you taking it very early in the morning?

Comment by Emily on February 18, 2011 at 9:53am
Thank you for the advice.  My mag and calcium are watched carefully.  I am on 1200 mg of calcium and 2400 mg of mag a day.  Blood sugar has been pretty erratic, but it is watched very carefully.  It used to be always in the 250 range and now its almost always under 150.  I got low blood sugar twice since transplant and that feels much different than these headaches.  Doctors have checked me out up and down every which way since I'm a new tx.  Thyroid is fine. became anemic a few months ago from blood loss at the site of my first angiogram.   I'm on 1000 mg of iron as well now.  Headaches are no worse or better since tx, always the same, like a hangover when I wake up and in the late afternoon and a constant nag during the day.    My coordinators say its from prograf and steroids, has anyone heard of that?
Comment by Kathleen Taylor on February 18, 2011 at 8:36am

You should definitely follow your doc's advise on what to take and what not to take, because the interactions vary according to what immuno regimen you are on.  For example, ibuprofen affects the clearance of Prograf.  Also, if you take daily pain meds, like Fioricet, it can actually lead to an increased risk of headache.


Two things I might suggest, being a former diabetic (before my pancreas transplant).  I used to get severe headaches from low blood sugar.  I still do, just not as often.  Usually I would wake up with the headache, but if I got up soon enough and took the Fioricet right away, and went back to sleep for about an hour, the headache would be almost gone, and then I would make sure to get some food in my system.  The low blood sugar headaches were more frequent just before and on the first day of my period.


The other  thing I want to mention is that if you are on Prograf, it will cause your body to excrete magnesium, and low magnesium has been associated with migraines.  Since you are a heart patient you should ask your doctor about this, but you might consider magnesium supplementation.  Both calcium and magnesium are involved in nerve and muscle function, and an imbalance can lead to problems.  (Calcium helps your muscles to contract and magnesium helps them to relax.) I take 1000 mg of calcium and 800 mg of magnesium (plus Vitamin D) all in divided doses.

Comment by Maggie Velez on February 17, 2011 at 12:15pm
I get the same headaches everyday.  I am on Fiorecet for about six months.  Just one to two tablets a day.  They are annoying especially when I first wake up from any sleep.  Motrin is not good for kidney transplant patients.


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