DIALYSIS SYNDROME...or One Possible Cause of the Migraines

written on July 24, 2014

I’ve been doing my own research to try and figure out why I keep getting migraines every time I dialyze.  More importantly, I’m also trying to figure out why my blood pressure is high every day (167/101 as I’m sitting here).  I’m on three different blood pressure medications (Diovan, Cardura and Cardizem) and even though I take them every day, my blood pressure now is rarely lower than this.  I know that the blood pressure is somehow tied to my migraines, but I haven’t figured out the link yet.

My doctor and nurse at the dialysis center don’t seem to have any ideas; I get the sense that I’m a “unique” patient in that I’m exhibiting symptoms of something during dialysis that no one else has.  Yay for me!  They keep going back and forth with my dry weight.  They both think if they take more fluid off in each session it should help my blood pressure (if the volume of blood in the body is too high, your blood pressure goes up to help push it through (a chemistry truism – high volumes equal high pressures)).  But I’ve noticed that the more fluid I have removed, the worse my migraine becomes as I’m sitting in the chair.

I’ve been thinking since I started dialysis that it’s a fluid imbalance.  Let’s keep in mind my two kidneys, although their function is very low, still make urine.  Which means even if all the other functions they’re supposed to perform aren’t working any more, they’re still removing fluid from my blood.  Unfortunately I don’t think they remove enough, but according to my dialysis nurse, if the dialysis takes off too much fluid every time I dialyze, then my kidneys have the potential to “dry out,” thereby failing completely and leaving me completely dependent on the dialysis machine.  Not my idea of fun.  The goal is to get the transplant before my kidneys fail completely. 

The last two weeks I’ve been wondering if it’s more than just a fluid imbalance – what if it’s a mineral imbalance? 

Based on what I know about dialysis, when the machine cleans my blood, it removes all the minerals and toxins that the kidney can no longer process (which in my case, and probably everyone who is on dialysis, is pretty much everything).  This ultimately causes an electrolyte imbalance in addition to other things.  Based on my understanding, electrolytes are kind of like the glue that keeps the amount of fluid in your blood consistent.  If you don’t have enough electrolytes, the fluid leaves your cells to replace fluid loss in the blood stream – thereby dehydrating you.  If you have too many electrolytes, it forces water out of the blood and into the interstitial spaces (the areas of your body that aren't directly connected via blood vessels), keeping the amount of fluid in the blood stream constant.  Neither situation is good for a healthy person, and it’s definitely not good for someone like me who doesn’t have healthy kidneys.

I spoke to a retired nephrologist today and he mentioned that the high blood pressure could be caused by an enzyme produced by the kidneys called renin.  Apparently renin is released by the kidneys when it senses too low a fluid volume – so if in dialysis they are truly taking off too much fluid, my kidneys could be sensing a lower volume of fluid and releasing more renin to compensate.  When renin is released, it constricts blood vessels to increase blood pressure.  Man, I’m getting dizzy just thinking about how all the systems in the body work together to try and keep fluids in balance.  They say 60% of all human beings is fluid – that’s a lot of water.  And we have so many systems in place to keep it balanced throughout the body, and to keep the pH of blood normal (should be slightly alkaline).  This is why the kidneys are so important to life – they are a major tool the body uses to keep this in order.  This is also why dialysis, as amazing as it is, is such a crap shoot.  Since every body is different, generic settings for the artificial kidney aren’t the best for everyone.  Perhaps I’m falling into that category.

I’ve been looking up a dialysis-related condition called Dialysis Disequilibrium Syndrome (also knows as DDS - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3491204/#CR4). 

I spoke to my doctor about it this week and he said there is no way I have that, and yet I don’t feel he’s doing anything to reduce my blood pressure.  He thinks the blood pressure is being caused by the migraines – I think the migraines are caused by the high blood pressure.  I’m starting to think I need a different opinion from another nephrologist – Cedars has told me that if my blood pressure continues at this level, they’re going to have to postpone the transplant; it’s too risky for me to go through the surgery if my blood pressure is higher than 140/90.  So right now, I’m not even eligible for the transplant because my blood pressure is too high.  Not good news.

My doctor’s reason for saying I don’t have DDS is that it’s something that would have started as soon as I started dialysis and I didn’t have the symptoms then - although the migraines started right away, as did the restless leg syndrome (one of the neurological components of DDS).  The blood pressure initially was under 140/90 but within a week of hemodialysis treatments it started living around 160/100. 

I’m not a doctor.  The more I research this, the more confused I get.  Part of the problem is they don’t do blood work every week so I don’t know where I’m actually at in terms of lab results.  No one has told me what my creatinine level is, which is a good indicator of how well my remaining kidneys are doing (the higher it is, the less function I have left).  Nor do I know what my urea levels are – if I have DDS, it is tied directly to the level of urea in my blood stream. 

I hate feeling like I’m the only person trying to find an answer to this.  Very frustrating.  I’m glad we have google though – at least it allows me the ability to try and find answers that no one else seems to want to find.