Headaches on dialysis as a direct result of photosensitivity ?

[kristina]

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.

Hello JW77,
"My" photosensitivity is directly connected to my suffering from Systemic Lupus (SLE) and MCTD.
Systemic Lupus (SLE) and MCTD plus all the other medical components involved make me as an SLE/MCTD-patient
very susceptible to artificial ultraviolet light (plus direct sunlight which has to be avoided as well).
The reason why this serious problem is hardly ever publicly discussed, is because of all the economical points involved:
If this problem would be openly discussed, as a consequence it would have to be adressed how SLE/MCTD-sufferers
are being discriminated against and then something would have to be done about it  ...
This would involve to use "old" light-bulbs again, because they are not so harsh on the sufferer
... but this recognition would involve an instant economical loss, because existing ultrabiolet light-bulbs
would have to be exchanged for "old" light-bulbs to be installed again ...

... Fortunately my husband and I thought about this problem early enough and as a result
we bought-up enough of the gentle "old" light-bulbs for our home to see us out...

Best wishes from Kristina.

[iolaire]

As far as your kt/v - a discounted indicator of dialysis adequacy to begin with - yes, 1.15 isn't very good.  There are other factors besides the dialyzer that effect adequacy...how long (or short) your treatment time, how well your access is working (recirculation problems), losing more residual function, not adhering to dietary restrictions and meds noncompliance come to mind.   But even 1.2 is the BARE MINIMUM the gov't. has set as a standard.  Try to aim higher.  (-:

So I see my new spKdt/V is at 1.06 with the new dry pack dialyzer!  I'll be interested to hear what they propose on Friday.  I'm not going to be happy if the end result is a suggestion to more time on the machine.

[noahvale]

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[greg francis]

Was interested to hear your thoughts on what may be the cause of real bad headaches. I have the same problem, this comes on after about 2 hours from starting dialysis and even continues through the next day.
So after what I have read from you have turned all lights out until I have to due to it getting dark, its worth a shot anyway. Are there any other thoughts on the reason for bad headaches, have been on hemodialysis for 3 years at home and this has just started early this year had no problems up until then.
Hope some ideas can be given. Greg. 
PS I am new to this group and only found the web site while trying to find where I could find to buy pressure bandages, they arrived in the post last week so will try them out to night.

[kristina]

Was interested to hear your thoughts on what may be the cause of real bad headaches. I have the same problem, this comes on after about 2 hours from starting dialysis and even continues through the next day.
So after what I have read from you have turned all lights out until I have to due to it getting dark, its worth a shot anyway. Are there any other thoughts on the reason for bad headaches, have been on hemodialysis for 3 years at home and this has just started early this year had no problems up until then.
Hope some ideas can be given. Greg. 
PS I am new to this group and only found the web site while trying to find where I could find to buy pressure bandages, they arrived in the post last week so will try them out to night.

Hello greg francis,
I do hope, you have good results by turning the direct lights off ...
... Photosensitivity in "my" Lupus and MCTD often shows, whether or not I am in an SLE/MCTD flare-up.
If there is no flare-up, the photosensitivity might be a little bit easier to deal with even though it is always there...
but if there is a flare-up going on - even a slight one - my generell oversensitivity plus symptoms of photosensitivity
often turn into excruciating pain and unbearable headages plus a very high blood pressure ...
Do you also suffer from very high bloodpressure when you experience these headages during dialysis-sessions?
Please let us know the results of turning off the direct ultraviolet light during your dialysis-sessions...
And please tell me: what sort of "pressure bandages" have you bought? I am asking because I don't know anything about it...
Best wishes and thanks again from Kristina.

[greg francis]

HI Kristina, Have just started using pressure bandages which arrived from the states some days ago, good service from the supplier but postage to New Zealand is just about the same cost as the goods. Now as to the bandages. they work very well just a bit tricky to get right. The idea is to remove a needle nearly out, stick one side to the side of the needle, place the pad on the bandage over the needle site, apply slight pressure on the pad and remove the needle quickly and stick the other  side down. Hold with pressure for 2 or 3 minutes and the bleeding  will expand the pad on the bandage and stop any further bleeding. Was very sceptical   that this would work but it does. Can remove both needles within a few minutes. All this sounds very complicated but works well and saves a lot of time.
I tried turning off all lights until fairly dark but still getting a headache, will have to look further at what may be the cause.

Keep well Greg
       

[kristina]

Hello Greg,
and thank you for explaining the pressure bandages.
I am very sorry that turning off the lights did not help you with the headaches...
... Could the cause for your headaches be one of the medications you take during dialysis? Or could it be air-conditioning?
... I mention air-conditioning, because that can cause terrible headaches as well,
when the air-conditioning starts to "dry-out" body fluids through nose and mouth ...
(I know this explanation sounds a bit strange, but that is how it was explained to me by a doctor)...
I do hope you soon will find the cause of your headaches and I know how very debilitating such headaches can be...
Best wishes and good luck from Kristina.