Help me please

[KICKSTART]

If you have read my other threads you know what has happened to me so far in the space of ten days. Went into dialysis today , took all this new medication (morphine based) for my neck and head problems. Well the tablets took care of about 80% of the pain in my neck but about an hour in i got the terrible pain in my head and over my eye again. I cannot begin to tell you how bad it is , it directly over my left eye (the right hand side of my head is totally fine , no pain , nothing. But now im starting to not be able to see out of my left eye properly , everything is blurred. Again i had to finish early after 3 hours i was in so much agony. This resulted in a massive row with one of the nurses which i dont really want to go into right now, but the end result is i told her i think im ready to stop and she is going to log this. Ive never had so much unbearable pain in my life , my dialysis free days are wasted as the pain is taking longer and longer to go and i just feel my life is a misery. We have discussed the nurses reasons behind why this is happening but none of them are valid, because some of the points she brings up have been going on for years and never effected me. I do find 2 things did relieve it was  firstly i come home craving sugar and have been eating about 6 sugar lumps when i get home and also a hot decent meal have helped it subside , but now nothing seems to be making it less painfull. I am seriously thinking of putting an end to my misery , how i will have the courage to do it i dont know yet , but i know i cant keep on being in so much pain , pain thats getting worse every time i do hemo.

[st789]

Hope you could find a way to lessen the pain.  Take care.

[aharris2]

Two things:

1. Trigeminal nueralgia - a nerve issue that will cause immense pain in one side of your face only. Untreated, the pain is so bad that it can lead to suicide. It is very treatable!!!
2. Arteritis - also pain on one side. It can quickly lead to blindness on the affected side. I don't know much about this one.

Kickstart, I don't know how well your symptoms match, but maybe this gives you a starting point.

Best wishes.

[boswife]

Im so sorry your in such pain.  You need to go to where ever (hubby gets great service in emergency) and offer them the suggestinns given here..  Sending love and prayers for comfort.. Please hang in there.  Mabie you'll get some answers this time...  hugs...

[Jean]

KS, I am so sorry you are having to go thru all of this pain. Keep in mind that morphine and all drugs that relieve pain also can add to depression. Dont let that interfere with your right thinking.

[Poppylicious]

KS, I'm not sure what to sugest, but if the pain is *that* bad then surely a trip to A&E is appropriate where you can be assessed by doctors and nurses who don't see you regularly, and who therefore may have a fresh approach to finding out what's going on? 

I really hope you get this sorted soon.  *hugs*

[Darthvadar]

Thinking of you!.....

Maybe have another chat with the neph... He seems to be taking you more seriously recently....

Hope things get better soon....

Darth...

[billybags]

KS, What is going on in your life? . Things do not go smoothly for you at all. Are you saying that the tablets are not working for your trapped nerves in your neck. I really think you should talk to either your neph or your GP. You should not be in such agony while you are doing your hemo. Are you seeing some one about all this aggro?  I really feel for you my friend.

[KICKSTART]

I have seen a neph (one of the best) on thursday. Because of the possibility of having Gastrointeritis they wanted me at the other hospital where all our doctors are so they could run some tests on me. While i was there they gave my neck a good examination and said what was happening was that my neck was going into spasms and trapping all the nerves in my neck and shoulder, so i have been given a mixture of muscle relaxant tablets and morphine based ones. The neph explained that from my neck the nerves also ran over the top of my head and down to my eye (explaining my eye pain). But on saturday on dialysis the tablets worked great on my neck , but the pain just over the top of my eye was so bad i was begging them to get me off ( it also makes my eye go blurred so i cant see out of it properly)  Normally this pain starts about an hour into dialysis but has up to now eased off when ive been home for a couple of hours and had a good meal (not sure if the meal is relevant ?) However the pain was so bad last tuesday , it last all day wednesday , i had to ring the emergency doctor who gave me some muscle relaxants and said to see my neph (which i did on thursday) but now every time i do dialysis this pain starts up and lasts longer and longer , its now carrying over to my non dialysis days. Im convinced it has something to do with dialysis as thats when it totally unbearable and i beg them to get me off , which of course means im not doing my 4 hours and the nurses are arguing with me .

[Darthvadar]

You could be right, KS...

A friend is on haemo, and for the first few months, she had blinding, migraine type, headaches on dialysis... She too found food helped... Could you have some soft sweets of some kind while dialysing???... Hard sweets being a bit of a choking hazzard if you're not feeling the best anyway...

Hope it gets better soon...

Love to the pawed people...

Darth...

[Lillupie]

hi,
 Boy you have been through a lot recently. I have been on hemo before and I would get really, really bad migraine headaches, and blurred vision, which I never had on PD. THey explained to me that it is the shifting of the chemicals in the body and brain. Maybe a similar thing might be happening to you. I only say this because of you said that you feel better after a meal.
 When you are getting too much pulled off or your getting the harsh treatment like hemo. Hemo drains everything out of you, not just the water. After you eat you are putting the stuff back.

Hope you feel better 

Lisa

[KICKSTART]

Off to A&E spoke to neph again and they want eye specialist to check me over to make sure its not something like Glaucoma going on , if eye gets all clear its back to renal to try more drugs!  By the way the neph was having a good laugh she said i sounded really drunk !

[Darthvadar]

Typical, KS...

You can't GET drunk, but seem to BE drunk!!!... No justice!.... If Mum has a half serving of Baileys Irish Cream, she's almost on her face!... She'd get drunk on half a packet of wine gums, these days!...

Hope you feel better soon....

Darth...

[billybags]

KS How is it going to-day?

[pamster42000]

Maybe you should change your type of dialysis. Thinking back my daughter, Sarah had terrible headaches......had alot of tests run regarding this issue, but never found a reason for the headaches...... could be hemo-dialysis isn't for everyone.

[KICKSTART]

Pamster , sadly cant change my dialysis , just finished 5 years of PD (pain and problem free) so dont have any more options now !

[pamster42000]

Have you seen a pain specialist's? Maybe  could be of some help. Sarah went to one and he was one of the most caring Dr's she had.

[KICKSTART]

I dont even think over here we have such a thing ? My only option so far is my doctor and more and more tablets, while i would really like to find out the cause. The prospect of pain or tablets that dope me up to the eyeballs is not one i look forward too, thats why im considering my life on hemo carefully.

[pamster42000]

Oh how I wish I had an answer to your problem. Maybe you should find out if there is another Dr. that can help you. I found you can't really rely on one certain Dr. Sometimes they are going by their own personal beliefs and don't look at the whole picture. Do some research to find out if there is a pain specialists in your area.....if your not up to it ask the Dr. for a reference to a specialists. He will probley send you to a Dr. that he is affiliated with but you may get a new perspective on your problems.

My daughter, Sarah was taking pain medications in 2006 and looking back I figure she was in a haze most of the time. I wish the best for you and I hope you find someone that can help you!

[Lillupie]

hi,
 How about nocturnal? That seems to be the most easiest on patients' body.

Lisa

[KICKSTART]

Firstly i only have one neph and one neph only , no choice of a different one. Secondly not allowed to do noctural as i live on my own and havent even had my fistula made yet. Im sure things are different over here 

[jennyc]

hi KS, hope you feeling a bit better. Um this will soung wierd but if they can't figure it out get them to check your bowels........ i find when ever i get a migraine that starts in my neck then travels up over my head to my eyes it usually has to do with my bowels. My old boss was having those as well and it was her bowels. Just a thought.