2 Months In - Dialysis Whoas!

[MSWwv]

So I have been on Dialyisis (4 hrs 3x week) for 2 months. The first two weeks went without a hitch. Actually felt pretty good during and after my sessions.

At the two week point, things went bad. Now during my session (about an hour in) I get an EXTREME headache (crippling pain). It stays wit me the rest of the day and make any type of normalcy out of the picture (I sleep the rest of the day - or see my head under a blanket). The next day I am fine, and then it is time to do it all again.

We have tried pulling less fluid. We have slowed down the flow during treatment. We have tried a different dialyzer. It is so bad, if we dont figure it out I am going to just throw in the towel and let what happens, happen.

On top of everything the back of my left eye exploded and I have lost 100% of my vision in it. Having reconstructive surgery on the 16th to hopefully restore some sight. Not convinced dialysis did not play a role in this issue.

If anyone has experienced this type of issue, please let me know what you did to ease the headaches. I really need to stay in treatment, but it is getting hard.

Some thoughts I have had: It could potentially be caffeine withdrawal. Apparently the pain is severe with it and that could make sense seeing as the caffeine would be dialyzed out during treatment. I also worry that my target weight might not be accurate and they might be drawing off too much fluid.

[Ziggydoodah]

Eight months on haemodialysis and the same thing happened to me. Obviously not as extreme as yourself. That sounds terrible. I cant say exactly what it is but I exoerienced terrible headaches towards the end of my dialysis session. I really think its a lot to do with your dry weight. When i started dialysis, i had hardly any appetite and had lost a few pounds. I felt a few weks down the line my dry weight was not right. Dialysis made me so hungry afterwards 😳, so i felt any gain on the scales was more to do with "fat" than fluid. I still urinate and havent seen a decrease in output. I kept saying to them but they said no stick to your dry weight. Eventually I spoke to a nurse who actually listened to me and put my dry weight up by 1 KG. It has made a difference. One of the other patients was complaining about headaches too. I noticed she had started wearing heavy winter boots. I said do you take them off to be weighed? I try to stick to wearing the same style of clothing, so nothing adds weight. They just automatically assume its fluid gain. In my case I really feel it was down to too much fluid being taken off. I hope you find a solution. Its really not pleasant.

[KidneyCoach NKF Ambassador]

Sounds like dialysis hangover. Removing too much fluid and or too fast or both. Target weight sounds like it needs to be increased by at least 1/2 kilo. The headaches, nausea, cramping are all symptoms of too much fluid removed too fast. JMHO.

[LittleDutch]

My best friend is undergoing dialysis and has had some bad side effects: upset stomach and unable to eat afterward and dizziness. It was finally determined that they were taking too much liquid and that her blood pressure was too low, so they are taking less water and giving her meds to raise her blood pressure. This may not be your problem but I know my friend had a really hard time getting them to do something about the situation. She had lymphodema so I assume that is part of why they extract water . Good luck! Be persistent and push you doctor to try to help. Sometimes the dialysis center and the doctor don't communicate very well.

[Hawaiilover]

So sorry you are going through that. Dialysis is hard enough. I started getting headaches & cramps after about 3 months and they put more fluid back when that happened which helped.