Bad Headaches

[KatieV]

Since getting a catheter in my chest, my dialysis has been running smooth for the most part.  My labs last month were awesome including my phosphorus level! 

However, a new symptom has recently cropped up that is greatly affecting my life.  For the last week and half, I've been waking up (Nocturnal NxStage) with a bad headache.  I've tried a number of things, including Tylenol and Claritin (nurse thought it might be seasonal allergies).  One morning, I threw up in my trashcan at work - it was that bad.  Last week, I ended up basically running every other day.  On the non-dialysis mornings, I'd wake up feeling fine.

Friday, my headache was so bad that Tylenol didn't touch it.  I suffered through work and went right to bed when I got home.  I slept from 6 pm to 11 pm, woke up briefly (husband wanted me to eat something - I think I about bit his head off!), and then slept until 10:30 Saturday morning.  Spent the rest of the day on the couch until I finally felt better in the evening.  Did some baking, cooked dinner, and was enjoying feeling normal.  Went back on dialysis at 11 pm and woke up Sunday morning feeling awful again.

I would think it is fluid related, except that I've been over my dry weight for two weeks (since a blood leak issue, so 2 days in a row were skipped).  My dry weight is 91 kg and I've been between 94.5 to 97 kg this week.  The maximum I can take off in a night without consequences is 2.5 and I actually only set the UF for 2.0 most nights last week.  Maybe I gained a little (dry) weight, but not that much!  This morning I came off at my lowest in a week - 93.3.   

I use 60 liters of dialysate, blood pump speed of 400, UF rate of 0.5 liters/hr, and 5000ml of heparin plus 0.7/hr through the pump.  Nothing has changed, including the same lot number of cartridges for about a month now.  I did take 1 benadryl last night before hooking up, and my headache is slightly less this morning.

Any ideas or suggestions?  Despite the weight increase, my ankles do not have much edema.  I think it's being stored elsewhere and being pulled out.  I turned the UF rate down to 0.3 liters/hr on Saturday night to give my body a chance to adjust better.  It didn't help.

[Riki]

5000ml of heparin???  I hope that's not in one night

[KatieV]

Yes - I run for 8 hours a night.  I use 5000 ml when I hook up and then 0.7 ml an hour through the heparin pump (another ~5.6 ml).  I was using less with the fistula, but the catheter is more prone to clot (and has).  At that dosage, there is just a little clotting in the filter.

[Riki]

Wow.. that 5 litres of heparin.  Do you have to get it by the bag? I've only ever gotten it in small 10ml bottles

[KatieV]

I got my units confused...

I take 5000 units = 5 ml, not 5000ml!  I've gotten better at the metric system, but still sometimes mess up!  Never given myself 5000ml!

[Riki]

oh, good... I was thinking, that much heparin might explain the headaches.. *G*

[LabRat]

Have you ever suffered from migraines or sleep apnea? Those 2 are culprits for morning headaches as well. I've been on Maxalt for the last 3-4 yrs for Migraines, it's an abortive. Pretty powerful too.. knocks the migraine out but it can make you sleepy.. which is fine by me.. rather be sleepy than in agony! 

[Sugarlump]

How about your blood pressure?
High blood pressure can cause morning headaches.

I get funny migraines, with visual disturbances but no pain. They're weird but I can't see properly for half an hour or so.

[obsidianom]

My wife useed to get headaches on dialysis. We found in her case that too much fluid removal would cause it as would too fast blood speed. We find going above 370 blood pump speed on Nxstage sets her off. When in doubt we slow down and remove less water . Just a thought . Everybody is so different that this may not work for you but it may be worth exploring. 

[KatieV]

My blood pressure is slightly high - around 135/77.  I don't have a history of migraines or sleep apnea.  I've been experimenting with changing the flow rate, UF volume, etc.  So far, I am useless the next day.

This was my week:
Monday: Went to work, had dinner at In-law's for BIL's birthday.  Skipped dialysis as we got home late.
Tuesday: Went to work, felt great; walked 0.8 miles after work.  Did dialysis.
Wednesday: Woke up with an awful headache, very nauseous; called in sick to work and then slept until 2 pm.  Spent rest of day recovering, did not do dialysis that night.
Thursday: Felt okay after waking up, mowed lawn for 3.5 hours and fried myself (!).  Made a bunch of food for 4th of July party - got home late and didn't do dialysis.
Friday: Went to work, felt fine (except for my burnt skin).  Did dialysis.
Saturday: Woke up with another awful headache.  Came off of dialysis, went back to sleep until 2 pm.  Felt sick all day.

I've been on NxStage since October 2011 and on Nocturnal NxStage since March 2013.  I am hating this!  Saturday is my day to accomplish projects, try to catch up on chores, etc. and I got NONE of them done. 

[Wildrose]

I get horrible horrible headaches after dialysis.... migraines on steroids I like to call them. Nothing touches the pain except for two vicoden and even then I don't like to use that type of pain med often... so generally I just sleep the headache off. As in sleep all day. I often wake up a few hours, head pounding and just go back to sleep until I can wake up with it gone. Takes most of the day. I am however on in center hemo. What I think causes me the pain is having too much fluid pulled off. I still pee, a lot and have little to no fluid build up in between dialysis sessions. Maybe you've gained some weight and are pulling too much fluid off?