How much longer??

[Magal]

Hi all

Maggie here. Sorry to have left it nearly 12 months to come back after joining but I've been trying hard to forget what happened & put it behind me but it just won't go!!

To bring things up to date - following my SAH last April I had a fairly reasonable recovery period during that lovely warm summer. However, following a scheduled MRI in September, it was decided I needed more coiling because the neck of my aneurysm was pretty big & the blood was trying to force it's way past the coils. I went back into Frenchay in November for about four days and since then I've felt worse than ever! Whilst I'm lucky enough not to have any visible physical disabilities I suffer from almost permanent chronic head pains. For almost 12 months I tried to fight it with paracetamol & codeine but nothing seemed to work. Things got so bad that I just wanted to end it all and my GP started to treat me for depression but the side effects from the pills made me feel so bad that she stopped them again.

I returned to Frenchay a couple of months ago to see my consultant & he says the head pains are coming from damaged nerve ends on the membrane surrounding the brain. Because I had such a large bleed, and blood is an irritant when out of the veins, the nerve ends are giving out the wrong signals. I've now started on a course of Gabapentin which is supposed to work on damaged nerve ends but again I'm struggling to see the benefit past the side effects. Some days are worse than others but I'm getting really uncomfortable joint pains & backache (all of which are listed on the leaflet with the tablets) and at times the head pain seems to get worse. The only time I have no pain is when I'm sleeping!!

Everybody keeps telling me it's early days yet but just how long is this going to last? I'm trying so hard to get on with life but I'm beginning to think that it's never going to go away. I've been put on the waiting list to see a neurologist for some counselling but I can't see how talking about it is going to help. I know the physiology is all OK (I've had five MRI scans so far including one just last Thursday) but it's little consolation with the pain!

Is there anbody out there in a similar situation this far down the line???

Maggie

[jess]

Hi there welcome to btg.

Yes I used to suffer alot of headaches but my neurosurgeon told me the more I worry the worse they will get it took a while to stop worrying however I did and I don't get them as often anymore.

Hope they go soon. Look forward to chatting sometime. Jess.xxx

[Liz D]

Hi Maggie

Chronic pain is just the worse thing to try and live with. Is there such a thing as a Pain Clinic in your local hospital? We have one in our local General Hospital and one of the clinicians in this team is a consultant clinical psychologist. She has a number of coping techniques that she teaches her patients and each year she runs Mindfulness courses. Although Mindfulness is not for everyone, the people that are suitable find it makes a huge difference. She gets great results and her patients find they can cope with their pain and get on with life. If there is no Pain Clinic might be an idea to ask your GP to refer you to a clinical psychologist who should be able to help you with coping techniques, sometimes there are other answers rather than just a pill.

I hope this helps a little, take care.

[Skippy]

Hi Maggie

I found that the codeine made my headaches ten times worse anyway so I came off that as soon as I could - they got so bad I couldn't lift my head off the pillow - it's an analgesic headache that ironically enough is caused by pain killers - especially opium based one such as codeine and tramadol. We used to have a nurse live across the road and she told me that its unusual to give any opium based painkiller to anyone with a head or brain injury - especially as they can cause hallucinations!!!

It does take a long time for the blood to be reabsorbed by the body and if it's irritating the nerve endings then thats why - it was about a year and a half before I stopped getting the vice like gripping sensation in the back of my head - plenty of water should help too.

Janet on her suffers from constant head pain due to a trapped nerve whilst clipping and I'm sure she attends a pain clinic - hopefully when she pops on she'll post a message for you.

But Jess is right (I think it was Jess) -the more you worry and get stressed about the pain the worse it gets.

Take care

[donnamarie]

Hi maggie i had my bleed last may 3rd and still suffer headaches nothing so far has wroked even though ive been on many diferent meds and seen a different neuro doc ( other than my own ) they think its mirgrines but the tablets for this didnt work either

My uncle was told by a friends that after his bleed it took 18 months for the headaches to go so i only take painkillers when im really bad and am looking forward to the 18 month mark

hope you get sorted soon

donna xx

[Vivien]

Hi maggie, I went to see a psychologist who helped me come to terms with my pain and with the changes in my life caused by me being disabled, I have other health problems apart from having had an SAH which gave me headaches for quite a long time. I found it really helpful and also practice mindfulness. There is a book called 'The Happiness Trap' which is also quite good reading. I think that constantly taking painkillers does actually make the headaches worse, as does fighting them. Try to accept that you have headaches for now and try and live with them ( difficult I know! ) Hope this helps

Vivien

[Leo]

Hi Maggie,

I'm sorry to hear that you are suffering from so many headaches. But at least you have a reasonable diagnosis (nerve damage). All the neurologists I have seen had said there is no such thing and I must be suffering from migraines (!) and the one pain doctor I did see diagnosed nerve damage but then he left the hospital before I could be treated with Pregabalin.

Your post has me thinking, perhaps I need an MRI scan???

"Recovery" such as it is, can be a very long, frustrating and painful process. But the suggestions made by other members here are worth pursuing. When you are having a 'good head' moment!

I, too was on Tramadol for a long time but I found that it was making me feel sick so I had to stop taking it. Chronic pain, especially head pain, is very debilitating.

I know it must feel like it sometimes, but you are not alone.

Hugs,

Leonie

[Winb143]

I was out of it so long I cannot remember if I had headaches ... thank goodness !!!!

I get the odd pain near drill holes in head, but touch wood and whistle... phew phew (me whistling)

I take a paracetmol and all is well.....singing helps cheer me up as my singing is so awful it makes

me laugh....laughter is a good medicine Good luck to all of us

Regards

WinB

[Janet]

Hi Maggie

I have suffered with severe nerve pain since my SAH in November 2006. My Nuerosurgeon told me it is most likely a trapped nerve but is unable to investigate it further as apparently my clips are not MRI compatible. I take a low dose of anti-depressants which works on nerve pain but find that the pain is worse when the weather is at extremes too hot/cold and generally have to increase the dosage.

After living with the pain for over 4 years I finally got referred to a pain management clinic and attended for an assessment in March. I have been accepted and start a course in July that is every Monday for 5 weeks. I'm hoping that I will be learnt techniques for coping with the pain as well as relaxation techniques to help with the anxiety caused by the pain.

I will let everyone know how the course goes once I've completed it.