anyone shared these symptoms after beginning hemo? not tolerable!

[fearless]

I started in-clinic hemo a couple weeks ago after being on PD for 8 years.

Here's what's happening:
shortly after starting therapy my fingers and eyelids become more puffy than they were when i came in.  Then the headache starts.  It gets worse and worse and by the time i leave I have a full-blown migraine.  Eventually the puffiness subsides and by the next day I'm less puffy than when i went in the clinic the day before.
I'm able to tolerate the fluid coming off without much change in blood pressure.

For the first time today the doctor had the nurse "flush" the dialysate (or something like that:-)  and that seemed to do away with one problem, which was that after the therapy started i would see a little glowing clock face in the middle of my field of vision (visual disturbance)  but i still got the headache thing going on - it was maybe not as bad but still intolerable. 

Anybody have any knowledge or experience about this sort of problem?

[fearless]

PS - this happened even on the couple of days when we hardly took off any fluid at all

[bleija]

i just got put on hemo 3 months ago after 2 yearas of PD, and the migraines are terrible, i get one every treatment, the only thing i can advise is exedrin migraine, idk if we're suposed to take it, but thts the only otc med that helps,. for me anyway. my BP is weird, at first my pressuere would drop, now it stays high and doewsnt come down, but gets higher at the end of my treatment. it sucks bc  the headaches i get wont respond to anything

[Cordelia]

For the first 4 months or so on hemo, I had headaches after dialysis, not migraines, but headaches for sure.

[rsudock]

I would have migraines and throw up afterwards b/c the pain was so bad. I realized the weekends and 2 days without D, then trying to go Monday and take fluid off was the worst. I really had to watch the fluid intake and they could only take 2 liters off max on Mondays. I also would have them shut the UF off 1/2 hour before getting off the machine on Mondays...worse pain ever...still makes me wince just thinking about it...I posted 11 months ago about this same situation....good luck!

xo,
R

[jbeany]

Since you aren't crashing from low bp, it could be that you are allergic to something used in the process.  You might be reacting to things in the dialyzer (filter), which is a good possibility if the pre-flush seems to help.  Heparin allergies are pretty common as well.  Latex is another possibility.  Demand that they start trying different things to see if they can figure out if it is an allergy, and what it is.  Ask for non-latex gloves for one treatment.  Ask them to hold off on the heparin for another, or see if they can use some other form of blood thinner.  My guess is that the dialyzer is the most likely cause, since some symptoms have abated just by flushing it.  They should be able to order different brands or kinds to try.  I'd guess this is going to be the last thing they try, though, since it's the most expensive for them to do!

[The Noob]

this happened to DH in center. first it was due to re-use of dialyzor, so stopped that. then it was too much saline, and also heparin.

is there anyway you'd consider doing home hemo? from what i've learned, its the high pump speed, pulling too much too fast, too much epogen, other things. now that DH is on Nxstage, he takes nothing but phos binders and a vitamin. no BP meds and has not needed epogen in months. and he is peeing again!

[Riki]

Just wanted to add that excedrin is just tylenol with an extra dose of caffeine, so it's ok to take

[fearless]

Thanks SO MUCH everyone.  It seems like there's no definitive answer, but plenty of things to try for a solution.

I'm going to use the information I've gained from all comments to have further discussion with doc.

@ TheNoob: yes, I am looking forward to the possibility of doing hemo at home, but I need to make in-clinic work for now, at least for a while.  My fistula is maturing while I use a neck catheter (wonder if THAT contributes to headache?) and my "homeostasis" seems so screwed up that I need to get on an even keel first, but it's so great to know how much better your husband is doing by dialyzing at home.  So glad!



Thanks again everyone!

[Cordelia]

When I had my neck line in for days, it messed up a nerve in my shoulder, I now have neuritis from the damage to the nerve. I found that the neckline was so heavy and it buggered up my shoulder, it's been a weak spot on me ever since and its been over a year now I've been on D.

[fearless]

wow, that really sucks.  I suspect I may have a similar problem because the catheter really restricts my neck movement (pain) and I think it's starting to make me hold my head in a peculiar, unnatural way.  That can't be good!  Can you get any therapy for that?  I hope there might be a way to reverse it.

[Restorer]

A side note: Extra Strength Excedrin has Tylenol, aspirin, and caffeine. You probably want to avoid the aspirin. Tension Headache Excedrin has only Tylenol and caffeine, and is safer for us.

[fearless]

thanks to those who gave information about exederin - i will make use of that.  i tend to see pain as a message though, too.  If there is a way to prevent the headache i want to find it because it will probably mean that I have found a way to do something that's better for me health-wise.  I know sometimes there's no solution though, and then I'm just really grateful to have the painkillers   

[Big E]

Fearless, you might ask your doctor if you can take Imitrex.  I don't know if it's safe for kidney patients but it wouldn't hurt to ask.  In my younger days I was plagued by horrible migraines and Imitrex was the only thing that helped.

I'm so sorry you have to go through this.   

[fearless]

Thanks Big E!

[jshabanian]

I got migraines during hemodialysis too.  My blood pressure would go through the roof.  They finally decided to do something with the sodium profiling on the hemo machine.  They turned it off, I believe.  They usually give sodium to dialysis patients because their bp tends to drop when the fluid is pulled, but in my case my bp just got higher with the added sodium.  Once they turned it off my headaches decreased. 

[tbarrett2533]

The whole entire 8 months I was on Hemo I was more sick than not 

I would have a 9 hour recovery time, it felt like just as soon as I got to feeling better it was time to go back..... so frustrating 

the best way that I described my headaches after treatments were a 'hollowed' out feeling insdie my head

once I switched to PD...... having Kidney failure is actually a tolerable disease now..... I almost feel human again.... if I have to have kidney failure PD is the way to have it 

[bleija]

The whole entire 8 months I was on Hemo I was more sick than not 


once I switched to PD...... having Kidney failure is actually a tolerable disease now..... I almost feel human again.... if I have to have kidney failure PD is the way to have it 

i agree one hundred percent, i found this out backwards from u, but PD is soo much better, and im trying so hard to go back, if my body/catheter would cooperate... but it will happen

[tbarrett2533]

The whole entire 8 months I was on Hemo I was more sick than not 


once I switched to PD...... having Kidney failure is actually a tolerable disease now..... I almost feel human again.... if I have to have kidney failure PD is the way to have it 

i agree one hundred percent, i found this out backwards from u, but PD is soo much better, and im trying so hard to go back, if my body/catheter would cooperate... but it will happen

I LOVE to read stuff like this  (knowing that I helped someone) 
I say if you are new to PD.......... just give your body some time............. hell its been almost 6 months for me and I am still gettig used to it....... PD is a better treatment option (for me) thats for sure 

I am so happy that I was able to have helped you 
yay for me 

[bleija]

The whole entire 8 months I was on Hemo I was more sick than not 


once I switched to PD...... having Kidney failure is actually a tolerable disease now..... I almost feel human again.... if I have to have kidney failure PD is the way to have it 

i agree one hundred percent, i found this out backwards from u, but PD is soo much better, and im trying so hard to go back, if my body/catheter would cooperate... but it will happen

I LOVE to read stuff like this  (knowing that I helped someone) 
I say if you are new to PD.......... just give your body some time............. hell its been almost 6 months for me and I am still gettig used to it....... PD is a better treatment option (for me) thats for sure 

I am so happy that I was able to have helped you 
yay for me 

i was on PD for 2 years before my catheter colonized with an infection and i had to have it taken out, was not hjappy about it at all, i love PD well considering my other options... i am going to have a tenchoffogram to see whats going on, my nurse is suposed to let me knw