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Never had a head ache like it!!!!!!! Should I tell MS Nurse?

Hello, I’m wondering if I should talk to my MS nurse about the worst head ache I have ever had (not induced by wine that is)

Last Friday Morning I woke with a very localized pain in the right side of my head that affected my right eye. The pain was astonishing and made me feel sick and having suffered from the odd migraines in the past, I put this one down to just that. However, the pain just got worse as the day went on and by the afternoon the pain was joined with what i can only describe as lightning bolts of pain that ran across my head and into my face and eye. Although at work, a meeting I couldn’t get out of i finally admitted defeat and headed home for my bed. With many pain killers and Gagapentin tablets inside me decided that a very early night should sort it out. However, Saturday morning came and so did the pain. I was becoming quite 'p’ed off by this time and even with all the drugs the pain just wouldn’t go. I had to waste my Saturday doing minimal easy stuff around the house before heading for bed again at a very early time. Thankfully, by Sunday it has mostly gone but it was such a shock to the system and I’m worried that it will happen again. So two questions really, does this sound like something one of you guys have had and should I bother my MS nurse with it?

Thanks for reading this.

Jason

Hello, I’m wondering if I should talk to my MS nurse about the worst head ache I have ever had (not induced by wine that is)

Last Friday Morning I woke with a very localized pain in the right side of my head that affected my right eye. The pain was astonishing and made me feel sick and having suffered from the odd migraines in the past, I put this one down to just that. However, the pain just got worse as the day went on and by the afternoon the pain was joined with what i can only describe as lightning bolts of pain that ran across my head and into my face and eye. Although at work, a meeting I couldn’t get out of i finally admitted defeat and headed home for my bed. With many pain killers and Gagapentin tablets inside me decided that a very early night should sort it out. However, Saturday morning came and so did the pain. I was becoming quite 'p’ed off by this time and even with all the drugs the pain just wouldn’t go. I had to waste my Saturday doing minimal easy stuff around the house before heading for bed again at a very early time. Thankfully, by Sunday it has mostly gone but it was such a shock to the system and I’m worried that it will happen again. So two questions really, does this sound like something one of you guys have had and should I bother my MS nurse with it?

Thanks for reading this.

Jason

Sorry I have no idea why it has come out twice.

Hi Jason,

This sounds like trigeminal neuralgia (TN). It is linked to ms. There is medication you can get for this so it may be a good idea to speak to your ms nurse.

Teresa.x

Hi Jason, I’m sorry you’ve felt so bad and hope it is better now. Btw this isnt something I have ever had so can’t really advise, however Teresa sounds like she knows what she is talking about. You sound worried so for that reason alone I think it is worth telling someone, you could see your gp or if you find it easy to get in touch with the nurse you could run it past them. They could always direct you to your gp. Cheryl:-)

Thanks for the advice. You know what its like, you feel like you are putting every ache and pain down to MS and I dont want to appear to be someone who moans all the time. I will look up trigeminal neuralgia and see if it fits the bill and I will text my MS nurse.

Thanks again

Hi Jason, I too get really bad heads, they don’t feel like migraines it’s like my head is really sore and also feels very hot to touch on my scalp. My ms nurse said it was neuropathic pain and referred me to a pain clinic. I tried a six week course of acupuncture which didn’t help. I do feel for you, when I have a really bad episode of this I just don’t know what to do with myself, if at home I tend to go and lie down. Hope your soon feeling better. Karen

Jason, I had the headache from h.ll when I suffered Optic Neuritis and it went on and on. Even years afterwards I kept getting that knife through the head type headache - with sudden jolts out of the blue on top.

I would discuss it with your ms nurse. My neuro thought it was migrane but Im sure it was caused by the optic nerve either pressing on something or swelling around such? It was no normal migrane and I too used to not know what to do to take it away, no meds did anything either.

I do hope you dont get it again. Hope you get some helpful advice/meds.

bren

x

Hi Jason,

Sorry to hear you had such an awful length of time with the pain, I know where your coming from. Thankfully I only get short sudden attacks of it coz I don’t know what I’d do with myself if they went on only longer than 30 secs (so much for woman having a high pain threshold huh?)

But I have to agree with Teresa it does sound like TN, when I posted something similar before I was told to try this site www.tna.org.uk. It described everything I felt within the first paragraph, it felt such a relief to put a name to something I’d been getting for over 10yrs, that GP just put down to stress!

Definatly tell you nurse about it. Hope this helps

Take care, Jenna x

Thanks for all your suggestions. I have texted my MS nurase and will look into TN.

THanks again

Jenna, Just wanted to say what a fantasic link you gave me, it was bang on and explains so much even down to the MS link. Thank you that has really helped.

Jason x

Hi Jason

sorry for the quick reply yesterday but was a bit rushed.

They say TN is the worst pain known to mankind!!!

We try to keep going regardless - don’t we? In fear that we won’t be taken seriously or that it is nothing more than a bad headache.

It could also be neuropathic pain as someone else suggested but TN is more painful. Your nurse will be able to tell you.

I had TN on my 40th Birthday last year and i am ashamed to say i was not as brave as you and ended up in bed sobbing like a baby!!! LOL!!

Teresa. x

Hi Teresa

I was not brave and can assure you I was feeling very sorry for myself but as you say, you just have to get on.

My MS nurse has texted me back to say it may have just been a Migraine but when I explained it was like having a heavy lead weight of pain surrounded by lightening she has said that should it happen again I go straight to my GP. Having read about TN I would say that some of what happened sounds very like it could be but to be honest while very very painful, the most pain you can have; I have to say that while I have never had anything like it I’m sure there are people out there who have it far worse than I did!

Believe me if it was a case of Trigeminal Neuralgia your MS nurse would have diagnosed it immediately. I suffer from it and have to take morphine. Next month my MS nurse is coming to see me to chat more. I may have to go for an operation. However with only a 25% sucess rate. I do not fancy my chances. The other day my wife spoke to my MS nurse and she, who is very good, talked of a patch I could wear on my face. Being housebound this does not bother me one bit and is more than likely the option I will go for.

Unfortunately I am immune to the drugs prescribed as I have been on them for that long. Morphine is the only drug that will touch the pain. I get maybe an hour or two of relief a day.

And there is no possible way you could work if it is trigeminal neuralgia.

I was once told on this site, many years ago, that TN was the most painful of all MS symptoms. Being relativily new to the world of MS, I foolishly scoffed at this idea. Now I know better.

Good luck.