I need some advice.

[Xanerith]

Hello folks,

I've been on dialysis for a while now and I've been having this constant problem that I just cannot handle anymore, every time after I get dialysis I get severe headaches, these headaches last the rest of the day (after dialysis) until the next day, usually it starts to clear the next night, but the problem is I go to dialysis again as soon as it clears, it's a constant and vicious cycle. I go to dialysis Monday/Wed/Fridays, so I am always in constant pain and severe fatigue, I told my doctor about this and  he lowered the speed of the dialysis machine but I am still having the issue, I am getting to the point where a life in constant pain is not a life worth living and maybe I should just stop, I even visited a neurologist and I had a MRI done and they found nothing. I told the doctor that I am still having headaches but he seems to just shrug it off, I am out of ideas and and I haven't gone to dialysis for the last two treatments just to find some relief. Heck I might not even go today, any advice would be great because at this point I do not know what to do besides just stop going and let the inevitable happen.

[iolaire]

At times I have headaches after dialysis - nowhere near your level.  I believe they are due to one of the following:
1. Removing caffeine (via filtering) and going through withdrawal after dialysis
2. Becoming dehydrated by removing to much water

I don't have enough evidence to support either but I think things have gotten better as I became busy at work and am only drinking two cups of coffee pre dialysis.  And as I get my weight/drinking/urinating in balance it seems better.

[SutureSelf]

Hello folks,

I've been on dialysis for a while now and I've been having this constant problem that I just cannot handle anymore, every time after I get dialysis I get severe headaches, these headaches last the rest of the day (after dialysis) until the next day, usually it starts to clear the next night, but the problem is I go to dialysis again as soon as it clears, it's a constant and vicious cycle. I go to dialysis Monday/Wed/Fridays, so I am always in constant pain and severe fatigue, I told my doctor about this and  he lowered the speed of the dialysis machine but I am still having the issue, I am getting to the point where a life in constant pain is not a life worth living and maybe I should just stop, I even visited a neurologist and I had a MRI done and they found nothing. I told the doctor that I am still having headaches but he seems to just shrug it off, I am out of ideas and and I haven't gone to dialysis for the last two treatments just to find some relief. Heck I might not even go today, any advice would be great because at this point I do not know what to do besides just stop going and let the inevitable happen.

I understand your frustration.  However, skipping treatments shouldn't even be a last resort to solving your problem.  A few questions...how much fluid do you usually have to remove on each treatment day?  How long is your treatment run?  and, how closely do you follow the kidney diet?  Where do you have the most problems?   Also, is your dialyzer (filter) reprocessed/reused?

[Simon Dog]

Ask if you can try a treatment with low UF - say 1200ml.   If that solves your problem, the answer to your quest may be found in shorter daily dialysis with the NxStage machine at home.

[Xplantdad]

My daughter has the same issues as you do sometimes. and I HATE that she has to go through these things

Here are the things that we do to help mitigate her pain:

1) She takes Excedrin right after beginning treatment (it has caffeine)
2) She will drink part of a caffeinated drink during dialysis
3) When she was "in center" we had them flush her dialyzer with a bag of saline before use-as some people are prone to headaches if this isn't done.
4) As a last resort, we will slow down the speed at which we're pulling off fluid-or extend the time that we're pulling fluid off and slow down the rate.

If I can ask, when do the headaches start...at the beginning, middle or towards the end of your treatment?

[Xanerith]

Thanks for the replies, to answer your guys questions, I run for 3 hours and I follow the dialysis diet very strictly They usually only take off 1-2L of fluid if that each session because I control my fluid intake. Orignally when I started dialysis I was 330lbs but now I am down to 210lbs, I tried taking migraine medicine close to when I have dialysis and it didn't seem to help, The dialysis speed used to be at 500, but was reduced to 350 and I still get bad headaches. Usually my headache starts an hour or an hour 1/2 after treatment starts.

[hatedialysis2]

I would check on magnesium levels.  It would be important to work closely with your doctor if you are deficient.   Most doctors will just check the serum levels but that idles not reflect true deficiency.  Only 1% of magnesium is in the serum the remaining 99% is inside the cells.  So You must insist on RBC magnesium test not serum.  They might not do it for you in the clinic but your doctors office can do it, or give you a prescription to take to a lab.

Below is a link about magnesium deficiency and migraines.
http://www.ncbi.nlm.nih.gov/pubmed/22426836

A safe and effective way to get magnesium absorbed quickly into the cells where they are needed is by applying magnesium oil topically.  You can find in any health food store or online.   Again, please work with your doctor on this so he/she can keep tabs on your levels and advise of your dosage.

All the he best

[Michael Murphy]

With the weight loss how good is your dry weight.  Is it possible the fluids they are removing are in reality dehydrating you.  When you go to dialysis are you showing signs of retaining fluid.  Are you still passing urine.  If so how much and is it possible that you are not passing urine due to dehydration.  When I started they were taking too much off, limiting me to 40 oz of fluid and I had stop going to urinate.  I was miserable until I showed up at my doctors with a BP ov 75/45 and they stopped trying to dry me out.  I felt better and my headaches stopped.

[dialysisuser82]

There is a group of patients that are Uber sensitive to dialysis.  The common problems are headache, itching, hive, fever and painful to the touch. 

After six months of suffering and a whole bunch of tests,  I tracked down one company that make dialyzer from steaming process.  it took my Neph. doctor's superior to order this type of dialyzer because

the manager would refuse to do so.

I use the Revaclear 300 Dialyzer type .

So here it is  the Gambro-Polyflux® Revaclear  dialyzer,  REVACLEAR Dialyzer Technology

Three-Layer Membrane1
• Designed to remove critical uremic toxins such as urea while retaining important proteins like albumin and other similarly-sized molecules.
• In addition to the small molecular weight molecules, the REVACLEAR Dialyzer’s membrane removes a large fraction of middle molecules similarly sized to Beta-2 Microglobulin(SC = 0.7, 70%)

Sterilization and Priming1
• REVACLEAR Dialyzer uses steam sterilization; it is never sterilized by E-beam or EtO.

http://www.gambro.com/en/global/About-Gambro/Contact

Hope this will help you.

[hatedialysis2]

Good work finding this dialyzer DU82.  Thank you for sharing!   

[Michael Murphy]

When I started my new dialysis career 3 years ago the first couple of months went fine until they pushed my time up to over4 hours.  I started getting headaches abou 3 hours in.  I tried Tylenol, they tried lowering my pump speed.  My Nurse Practitioner suggested food.  Rarely since then do I get headaches.
I bring a 8oz bottle of apple juice, a piece of quiche (local store makes a mean fresh quiche Lorraine), and fruit. 

[Simon Dog]

REVACLEAR Dialyzer uses steam sterilization; it is never sterilized by E-beam or EtO

There are some people who get thrombocytopenia when using E-beam sterilized dialyzers.

After six months of suffering and a whole bunch of tests,  I tracked down one company that make dialyzer from steaming process.  it took my Neph. doctor's superior to order this type of dialyzer because the manager would refuse to do so.

Generally any change in Rx, other than minor adjustments to UF, require an MD's order.