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vix

Problems - Doctor Doesnt Understan

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vix

Hi there

 

I am new here and this may seem a bit off that in my first post I am ranting about doctors!!! But maybe someone on here could help or advise me.....

 

The main sympton with my MS is headache and I have had one for over a year now just a dull ache then it will all of a sudden become so painful that I am actually crying and holding my head. I have spoken to doctors and both my neurologists about this and they dont seem to listen and just this week the doc has put meon 50mg of Dicolfenic 3 x a day well that aint working so I have uped my dose to 150mg 3 x days + 1g paracetamol and still its not working, these headaches normally last at this level of pain between a week and two weeks.

 

Has anyone got any ideas as what I could ask my doc for to help get rid of the pain without me chopping my head off??

 

Vix


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gez

Hi there

 

I am new on here and thought I would offer you a warm welcome!

 

I cannot offer you any advice but I am sure someone else that comes along will be able to. Your symptom sounds awful and must be a lot to put up with.

 

I hope you find some relief soon.

 

Geraldine xxxx :flowerface:


xoxoxo Gels xoxoxo

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Gaynor

Hello Vix and welcome to the forum. I'm sorry to hear about your ongoing headache problem, that sounds awful. I suggest you go back to the Doc's as the treatment is not working for you but I completely advise against controlling your own level of painkiller/anti inflammatory....that is unless the Doc has agreed that you can up the dose. If not then go back and discuss it at least first.

 

Hope you get somewhere soon,

 

Gaynor

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Hezza

Hi Vix,

:flowerface: to the forum. Do you have an MS Nurse? If so have you tried discussing this with him / her? Any time I have received meds it has been my Nurse who has been instrumental in advising what I should try and requesting it from my GP.

 

If not then all I can do is echo Gaynor's advice to speak again to your GP as I'm not regularly taking any medication for MS related pain.


Life is short. Eat dessert first. Jacques Torres

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vix

Hi there

 

The only reason that I have raised my medication is due to the fact that I have medical knowledge, I do not recommend that others do the same without seeking medical advise.

 

I dont have a MS Nurse as my meds come from my neurologist in London who I am due to see again in May and my other neurologist I am due to see in June so I guess that I will just have to ask them again about the headaches!!!!! Maybe this time they will listen?!

 

Thanx guys


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Oops

I get this, and know what you mean about doctors not really understanding it. However, I'm lucky enough to have access to MS Nurses and through conversation with her we between us worked out that what's ACTUALLY happening is similar to Trigeminal Neuralgia (which I also get) but on my scalp. The Trigeminal nerves do actually cover part of you skull as well on each side, meeting at the back. What causes the pain, for me at least, is neuralgia which in turn triggers lots of tiny little spasms on my scalp, hence the pounding version of the milder headache kicking in.

 

The solution for me was a proper neuropathic painkiller - in my case Gabapentin - which calmed the initial nerve pain and stopped it getting bad enough to cause the spasms. It's by no means a magic bullet, but has at least calmed down enough to make it bearable and liveable with. I also take paracetamol 2 or 3 times a day to take the edge off the residual pain. Anit-inflammatories - like ibuprofen and diclofenac - are a waste of time for this sympton because there is no inflammation for them to work on. i do take ibuprofen to ease other symptom, but they don't affect the head thing.

 

In your shoes, I would tell my quack that you think this is a neuralgia, and wish to try either Gabapentin or Pregablin to ease it. Put the Diclofenac in the bin.

 

Hope that helps! :winkgrin:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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Vegged Out
Shirl
:winkgrin: to the board and I hope you soon settle down among your new friends. Oops is right about the type of medication you need. I too get Trigeminal Neuralgia and am on Gabapentin. Wouldn't be without it so ask your GP immediately for neuropathic painkilling med..


Shirley  "one day at a time"

 

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vix

Thanx for the advise I have never heard of Trigeminal Neuralgia so I have looked it up on the net,

 

1. I am on over 50 I am only 31

2. The pain isnt in my face it is in my head the left or right frontal lobe

 

But you can be sure that I will mention this to my doc who I am seeing on the 28th of this month as I have only just moved here and I need to get them to understand. I just need to pain to be eased off that is all that I ask for I never thought that it would be so much hassle!!!!

 

But I am also going to see if they can give me so of this Gabapentin to if that helps

 

Thank you all so much xx

 

Vix


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Sluggish
Marina

Hi Vix and a big belated welcome from me:hearts:

 

I see we're both from Bucks :winkgrin: .

 

Two neuros? Does that confuse the issue somewhat? I see my neuro privately, on my health insurance. He does London (Charing X), High Wycombe (NHS) and Windsor (privately) and specialises in MS. It's not the usual MS neuro for Bucks though (we tend not to mention names here).

 

We're all entitled to an MS nurse. Would you be able to ask to be put in contact with who I suppose would be ours? Normally, as soon as one gets a DX, contact with an MS nurse is one of the first things done. I'm a bit surprised it wasn't suggested to you. MS nurses are handy and helpful and do things like arranging physio or for an OT to visit your house and so on. Many people use them as a first port of call before contacting their neuro, or just contact them for whatever other purpose to do with MS. They can also prescribe some meds, albeit sometimes only the initial dose, then it gets passed on to your GP. When I first got my DX, there was some confusion and I ended up with 3 MS nurses contacting me:winkgrin:. One from Berks, the 2nd one I've forgotten where from and the one I have now, for Bucks.

 

TN is quite a common symptom, it would seem. I get it too.

 

When your doc put you on Diclofenac, did he say what type of headache you had or why you might be having it? If it's THAT painful (sounds like murder!), did none of them think of investigating it further with, say, a CAT scan to rule out anything more serious that might be causing it, if nothing else? It was a totally different type of headache (pain) that I had for weeks which eventually led to a CAT scan and then to a brain MRI which then eventually led to my DX. But I too had to scream and shout to get a doc to listen to me. One I went to just laughed his head off (literally, laughed and raised his eyes to the heavens) at the thought that such a headache might be anything other than just a normal everyday headache.

 

Front lobe headaches and pain can be caused from all sorts of things, from sinus problems to migraine to epilepsy to brain disorders. I would definitely try to instill into your doc just how painful it is.


Marina

(belated DX in June '05, SPMS)

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Michelle

I'm not sure why your doctor put you on Diclofenac for the type of pain you describe. I agree with Oops on this.

 

Regards

 

 

Michelle :winkgrin:

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Oops
1. I am on over 50 I am only 31

I'm 32 and have had this symptom for at least 4 years.

 

 

2. The pain isnt in my face it is in my head the left or right frontal lobe

Don't worry about this bit.

a) The whole of your scalp is innervated just the same as your face, and you can get a neuralgia in any nerve. If it isn't the Trigeminal Nerve it'll be another one.

 

b) Have a read of THIS and you'll see why I think it probably IS the Trigeminal Nerve triggering your headaches, same as mine. (Ps. Ignore the bits about which drug and surgery. It's a page about people who get TN and don't have MS. It's the diagram you need to be looking at so you can see the areas which are covered by each bit of the nerve.)

 

Hope that helps.

 

 

Afterthought re:MS Nurses...I'm full Secondary Progressive (no relapses) so I only see my neuro when I need to talk him into signing my HGV Licence offfor another year. Everything else is done through my MS Nurse, which is fab. My GPs just do as she tells them. :winkgrin:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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vix

Thanx everyone lots there to take in...

 

I am not sure why I have to neuro's but I see one twice a year and the one in London only once a year. I did have an MS nurse come out to show me how to inject (quite funning seeing that I use to inject people in my line of work) but I wasnt informed that she was my main point of call.

 

But as I have only just moved to Bucks I am sure that my neuro that I see twice a year will stop seeing me as I am no longer in his area.

 

I had a CT scan and MRI and god knows how many other tests when I was first DX but nothing since.

 

Everytime I mention the headache they just dont seem worried about it and they just want to give me more pills that dont work. Last month my old doc (as I have moved) wanted me to try anti-depressants and I am totally refusing them. So I thought that I would have more luck with a "fresh" doctor - but hey who am I kidding. He really didnt even seem interested in my medical history!!!!!!

 

But I am definantly taking all of what you guys have said to me when I go back to my doc at the end of this month and also a different doc as I have asked not to see that one again!!!!

 

Vix


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Michelle

My neuro -rehab doctors always tells me that if meds dont work,then dont take them. Of course you must never stop taking meds that you have been taking for long periods,without first weaning off them. I would not be so quick to dismiss anti -d's. I take Citalapram for pain control and they have helped. So please don't dismiss anti-d's because of the label.

You might also like to consider LDN. We have a LDN section here on the forum and a Diary section. They are worth a read.

 

Regards

 

Michelle :winkgrin:

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vix

Thanx Michelle I will work my way round the site to the LDN section and have a little read x

 

Vix


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Sluggish
Marina
b) Have a read of THIS and you'll see why I think it probably IS the Trigeminal Nerve triggering your headaches, same as mine.

Please don't take this the wrong way, but I don't think any of us can say for sure what it is that's causing Vix's pain. As I said earlier, frontal lobe head pain can be due to many conditions, including TN. In my opinion anything else, particularly anything more severe, should be ruled out first as a precaution.

 

When I had my mother of all whopping and electrifying headaches (different to Vix's and not my usual TN), before my DX, I didn't go to the doctor for 5 weeks until someone suggested to me it could be an aneurysm. I looked it up and the symptoms were indeed identical. It frightened the bejasus out of me so I tried to get a CAT scan.

 

One GP laughed his head off at me whilst looking to the heavens, as if to suggest that my head pain was nothing but an ordinary headache. I then went to another GP. He didn't think it was anything to worry about (still amazes me!), but agreed that I could have a CAT scan to rule out an aneurysm. It was early December and apparently only a neuro could give a script for a CAT scan of the head and brain (how true this is, I don't know, but it's not the point). Trouble is, that the neuro was booked up till end of January. I told the doc that he had to be kidding as I could die in the meantime, if it was an aneurysm. I then told him I could fly to France (my second home) the next day and would guarantee him I could get a scan in under a week. He suggested I do that, so I did.

 

Booked my flight on the Monday, arranged with GP in France to have the scan on the Fri and see neuro on the Saturday. Flew out on the Weds. CAT scan was clear - oooph, phew, relief. Neuro did some tests and ordered an MRI which I had on the Mon and flew back on the Tuesday with MRI and results in my hand. All done on my private health insurance, I would add. MRI showed lesions which I knew what it meant, and it shocked the life out me although I got over it pretty quick as I wasn't surprised given my past - and the rest is history. Not that anyone ever told me what this helluva head pain was which lasted 2-3 months and when I couldn't bear bright lights at all and also had a severe neck pain with it. I changed GP and am now very happy with him, without him, I don't think I'd have got my DX (having already waited decades). The first GP retired even though he was under retirement age, the 2nd GP (private) has probably retired as he was already about 80 anyway.

 

My TN affects the left side of my head, face and neck and makes me feel as if I've been battered to hell in a world championship boxing fight. The "Tri" in Trigeminal means it's a nerve split into 3, each of which goes in a different direction. That's why some of us might get one kind of pain whilst another one of us gets a different kind of pain, depending on which of the 3 nerves is affected.

 

I was initially given Baclofen for it, which did seem to help fight it off a bit. I then went on LDN and my attacks of TN now tend to much less and last for about 3 days. The LDN does seem to keep mine at bay, possibly together with the Baclofen.

 

Was your MS nurse in London or Bucks? If in Bucks (it might be one whose name starts with an "E"?), it might be an idea to make an appt with her just for a general chat and ask her what she might be able to help you with. Then you can decide for yourself if she might be of use to you or not.


Marina

(belated DX in June '05, SPMS)

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vix

Hi there Marina

 

I am fully aware that no one can dxme and that I have to leave it to the professionals it is just nice to have some ideas to go back to my doc with as to what these headaches could be as I know that they are not "Normal" headaches.

 

No my MS nurse is not from Bucks or London she is from where I have moved from.

 

Many thanx

 

Vix


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Oops

Fair point Marina, taken on board completely the right way. :lolbash:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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