Headaches on dialysis as a direct result of photosensitivity ?

[kristina]

Hello,
When I first started dialysis on 13th December 2014 I also started to experience terrible headaches.
At first it appeared that these headaches might be due to me not having had enough to eat before each dialysis-sessions,
so I made absolutely sure that I had a snack before every dialysis-session and I thought,
the headaches became a little easier to manage as a result of my having a snack beforehand.
Unfortunately these headaches have now returned "with a vengeance" and they have become worse than ever,
in fact I now suffer from these headaches at all times, even on my days off dialysis...
I have carefully analyzed and have figured out that these headaches are connected to my suffering from photosensitivity
and they are a direct result of my regular exposure to 4 hours of intensive ultraviolet-lighting in the dialysis-centre.
Is there anyone who also suffers from photosensitivity and how can this problem be approached in a sensible way ?
Thanks from Kristina.

[iolaire]

I have carefully analyzed and have figured out that these headaches are connected to my suffering from photosensitivity
and they are a direct result of my regular exposure to 4 hours of intensive ultraviolet-lighting in the dialysis-centre.

How did you figure this out?  If you are right it sounds like a huge motivator to move on to home dialysis if its an option for you.  Every center I've been in has been brightly lit, but a few I've visited do turn out some of the lights mid session.  I really doubt I could talk my center into making that change, likely its something built in with a new center.

I started to have headaches after dialysis.  Recently I mentioned it to my nephrologist and first he asked me what my blood pressure was and we determined that was not the cause, other than that he basically said the next thing to do would be to talk to a neurologists and they will immediately order MRIs and the like...  Since I can get it under control with Tylenol I'm just dealing with it now.  I read another thread on here where the general consensus (I'm do a huge summarization/approximation here) is the change in blood from D might cause stress in the brain leading to headaches. I also wonder if it might be affected by the amount of liquid removed or amount of cleaning required.

[noahvale]

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[iolaire]

How did you figure this out?  If you are right it sounds like a huge motivator to move on to home dialysis if its an option for you.  Every center I've been in has been brightly lit, but a few I've visited do turn out some of the lights mid session.  I really doubt I could talk my center into making that change, likely its something built in with a new center.

I started to have headaches after dialysis.  Recently I mentioned it to my nephrologist and first he asked me what my blood pressure was and we determined that was not the cause, other than that he basically said the next thing to do would be to talk to a neurologists and they will immediately order MRIs and the like...  Since I can get it under control with Tylenol I'm just dealing with it now.  I read another thread on here where the general consensus (I'm do a huge summarization/approximation here) is the change in blood from D might cause stress in the brain leading to headaches. I also wonder if it might be affected by the amount of liquid removed or amount of cleaning required.

How long is your treatment time, blood pump speed, and the average amount of fluid you have to remove?

3.5 hours, 400 speed, low fluid removal from 500 to 1500 + the 500 they want to take off.  I still urinate a TON so I really just try to tone down the liquid intake on dialysis days to try to have enough for them to remove (they want 650 + their 500).

[kristina]

Thank you iolaire.
You ask how I figured out that the headaches and the disturbances of my BP
are the result of the artificial ultraviolet bright lighting in "my" dialysis-centre...
well ...  I suffer from Systemic Lupus (SLE) and Mixed Connective Tissue Disease (MCTD)
and photosensitivity is one of the medically established side-effects of these diseases...
...  Nothing can be done about the side-effects of photosensitivity, except to try and avoid these artificial ultraviolet bright lights at all times...
This I have tried to avoid for many years, but since starting dialysis, I cannot avoid these artificial ultraviolet lights anymore
because I have "to stay put" in these artificial ultraviolet lights for over 4 hours... three times every week...
... at first I had hoped that my body could withstand it ... but then the symptoms became more and more accumulated
and now I suffer from headaches and uncontrolled high blood pressure at all times, even on days when I am not going to the dialysis-centre...
... But first I had to make sure these headaches were not a direct side-effect of the process of dialysis itself...
... Therefore I collected as much information as I possibly could about everything connected with dialysis and the process involved...
...But, however I tried to put it, the remaining end-result is my body's reaction to the artificial bright ultraviolet lights in "my" dialysis-centre
and the fact that my blood pressure reacts uncontrollable as a result to my suffering from photosensitivity whenever it affects my body...
Thanks again from Kristina.

[kristina]

How did you figure this out?  If you are right it sounds like a huge motivator to move on to home dialysis if its an option for you.  Every center I've been in has been brightly lit, but a few I've visited do turn out some of the lights mid session.  I really doubt I could talk my center into making that change, likely its something built in with a new center.

I started to have headaches after dialysis.  Recently I mentioned it to my nephrologist and first he asked me what my blood pressure was and we determined that was not the cause, other than that he basically said the next thing to do would be to talk to a neurologists and they will immediately order MRIs and the like...  Since I can get it under control with Tylenol I'm just dealing with it now.  I read another thread on here where the general consensus (I'm do a huge summarization/approximation here) is the change in blood from D might cause stress in the brain leading to headaches. I also wonder if it might be affected by the amount of liquid removed or amount of cleaning required.

How long is your treatment time, blood pump speed, and the average amount of fluid you have to remove?

Hello noahvale,
My own treatment time is 4 hours, blood pump speed is 350 and the average fluid removed is ~2 liters...
Thanks from Kristina.

[Deanne]

Is using a sleep mask or sunglasses during your sessions an option?

[iolaire]

Is using a sleep mask or sunglasses during your sessions an option?

I was thinking along the same lines, how about an umbrella?  Does your center have an isolation unit?  Some centers I've been at have a separate room which might have its own light switch.  My center doesn't, it has an area with waist high bars around it but no wall.

[noahvale]

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[iolaire]

3.5 hours, 400 speed, low fluid removal from 500 to 1500 + the 500 they want to take off.  I still urinate a TON so I really just try to tone down the liquid intake on dialysis days to try to have enough for them to remove (they want 650 + their 500).

It's good you still urinate.  Pulling a lot of fluid off in a short period of time is a leading cause of the washed out feeling after dialysis.  Maybe increasing your run time by 30 minutes while decreasing the blood pump speed to 350-360 (slower/longer/a bit gentler) will help keep the headaches at bay.  Personally, I would start with this before going through MRIs and the neurology route.  Ask your neph to write the order. Plus, a major benefit of lowering the blood pump speed is less wear and tear on your fistula.  Also, what size dialyzer do you use?  I'm most familiar with the Fresenius Optiflux® Dialyzers which come in four sizes:160NR/180NR/200NR/250NR. For instance, it's not uncommon for dialysis facilities to use "one size fits all" (to increase profits) instead of individualizing to the patient.  Just something else to look into.

http://www.homedialysis.org/news-and-research/blog/38-dont-flog-fistulas-slow-hemodialysis-blood-flow

Polyflux 21R, I don't see any volume measurements but it's larger than the disposable models I get well traveling.  I'd be hesitant to stay longer for now.

[noahvale]

^

[kitkatz]

They say that amber colored sunglasses the darker the better might help with the light sensitivity. 
I, too, have light sensitivity tot he pint I have had them move my chair away from the lights.  But then I am in a darkened unit at night.
I think sunglasses might help you a little bit.

[kristina]

Thank you Deanne, iolaire and kitkatz for your kind thoughts.
I always wear dark sunglasses (with UV-protection) and wide-brimmed hats, whenever I go out
including the center. Unfortunately, the artificial ultravioled light-beams "seep through" my skin all the same,
despite the fact that my whole body is adequately covered by clothes...
... That is my problem with artificial ultraviolet lighting: given half a chance, it starts "seeping through" my skin,
finds its way into the circulation of my body, gives me terrible headaches and slowly "pushes" my bloodpressure out of control...
Unfortunately the only real medical explanation I have found about artificial ultraviolet lighting and photosensitivity
is a long medical explanation in the 1938 Encyclopædia Britannica ...
Thanks again from Kristina.

[iolaire]

Kristina - also another suggested cause of headaches after dialysis was caffeine withdraw, I don't remember if this sit or another suggested that.  The thought being is the caffeine gets filtered out and lack of caffeine causes the headaches.  I'm thinking that could be a cause of mine, since I drink a lot of coffee throughout the day and non in the evening after dialysis.

Polyflux 21R, I don't see any volume measurements but it's larger than the disposable models I get well traveling.  I'd be hesitant to stay longer for now.

Were you given an informed consent form for dialyzer reuse with the option of declining?  EDIT: I'm also curious to know what dialyzer your clinic uses for its transient patients.
...
My main concerns with reused dialyzers are two-fold: human error in the reprocessing, including getting someone else's filter (it does happen - more frequently than documented), and how low the clinic will allow the fiber bundle rate to go (DaVita is not being honest about the 80% level - their clinic do go lower) before issuing a new dialyzer.  With conventional short time in-center treatment, dialyzer efficiency becomes even more paramount.  The carcinogenic affects of reprocessing fluids don't even bother them since the average life expectancy of a dialysis patients is five years.

I'm at DaVita.  They have a sticker with your name on the dialyzer plus your name written large in marker.  The techs check the name each time and I think they also enter the reuse number each time.  When you first start they tell you also to check the dialyzer, which I do maybe 60% of the time.

I don't know about the fiber bundle rate or how many times they re-use them.  My nephrologist group are also the medical directors of my center so I have faith that its ran in an ok fashion.  Not to mention they should have a good chunk of patients showing up with medical insurance (like me) so they have a huge source of insurance revenue to buffer things.

re:  "A test is performed to make sure no disinfectant is left in the dialyzer. Once it is tested, the dialyzer is ready to use for the dialysis treatment."
They use a test strip prior to hooking me up, and show it to me and another tech who must sign it on the computer and check the dialyzer.  Only once has that test strip come back bad and they ran more saline through the lines.

Also I'm in favor of reuse just from the standpoint of generating less plastic trash. 

[Deanne]

I understand about how ultraviolet light can seep into the skin. I'm using an anti-aging light that uses ultraviolet light just because of this. Those lights aren't visible to the naked eye, but their intent is to go through the skin. I'm sorry it's affecting you like this. I found some UV-resistant clothing through a Web search. What I saw is intended for UV light from the sun, but maybe it provides at least some protection against other types of UV lights, too.

[noahvale]

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[jeannea]

They use paracetic acid to clean them? Seems like you should have a vent hood for that. Just a mask is not acceptable practice in a chem lab for working with that.

[Riki]

I have cataracts and sometimes wear my sunglasses during treatments, but we are able to turn off the lights over our chairs, and once everyone is on, they turn off the hallway light as well.  Some of the workers have issues with the florescent lighting in the unit, so it's not just the patients who enjoy the lights being off.  There is a lot of natural light that comes in the windows, so turning off the lights doesn't mean we're in the dark.  Though, that wouldn't bother me either, as glare from a grey sky bothers me just as much as a sunny day.

As for reuse of dialyzers, wow.  That just seems icky to me.  I remember, one of the first times I dialyzed in the US, I saw "single use only" written in big black type on the side of a saline syringe.  I remember thinking, "isn't that a given?"  The thought of anyone reusing those never even occurred to me.

[Charlie B53]

Is using a sleep mask or sunglasses during your sessions an option?

Polarized sunglasses.

I am near-sighted .  Not so much that I wear my glasses inside the house, but religiously put them on at the door going out.  Grocery stores, also very well lit, if I take off my glasses, (because I'm 'inside'), I start to get a head-ache ofter a few minutes.  I've learned to leave the glasses on, no problem.

My last eye exam, the Dr Lady told me that for my age my eyes are well clear of cataracts because of my regular use of polarized sunglasses protecting my eyes from the harmful UV of sunlight all these years.

UV can penetrate overcast.  You can still sun-burn on an overcast day.  Wear your sunglasses.

[Riki]

My cataracts were caused by steroid use after transplant when I was a child.  I had my first cataract surgery when I was 23, and I'm waiting now for the second one to mature.

[Charlie B53]

Have you tried slathering yourself with say an SPF 50 or higher anti- sunburn UVA/UVB sunblock cream?  Some are even available in spray-on for kids.

[iolaire]

Were you given an informed consent form for dialyzer reuse with the option of declining?  EDIT: I'm also curious to know what dialyzer your clinic uses for its transient patients.

noahvale based one your strong questioning I read up on reuse a bit and have chosen to start using the dry packs.  My nurse weakly tried to claim that the reuse filter was larger and the disposable filters were too small to me, she did agree it was my choice and I said I'd talk to my Dr about it.  It just so happened he came in that day and took care of it for me.  I told the nurse I'm happy to wait until the current filter's life is over. 

But since last week the reuse filter has visually had issues, a lot of it is white without blood moving through (well over 1/3 of the visible part shows no blood).  The nurse was on vacation last week + Monday and Wednesday she read some values from the current sticker and said the volume numbers still look good.  However it was also lab day so she said they would figure out if it was not performing well.  I see the values for spKdt/ and it is at  1.15 below my goal of 1.2, usually I'm in the range 1.26 to 1.3 or so...  So I wonder if they will have pulled the reuse filter.

[noahvale]

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[Alex C.]

In my experience, I start to get headaches when my potassium level is high.

[JW77]

I'm a bit confused about the UV lights.??  Most units are standard fluorescent lights and are very very unlikely to have included daylight equivalent in the specs.

Its a design flaw that's often overlooked, and its bad for the staff as well as the patients.

 I found that the cheap, artificial light did give me headaches, I used to wear a cap when in the unit, just to keep it out of my eyes directly.

Dialyser size should roughly be calculated on bodymass, and existing clearance. My body won't tolerate larger dialysers.  As for reuse. In the UK dialysers are never ever reused.