Neuro Appointment - still waiting in pain !

Lubs

Hi,

I've been suffering from intense headaches, or head pain. It starts at the base of the head, spreads around to the ears, which feel hot, like my brain is trying to get out through the ears! Then the pain spreads to the forehead and behind the eyes. I can't wear my glasses, due to the pain, causing changes in eye pressure, so I can't read etc. I'm very light sensitive as well. The only time I gain relieve is when something cold is placed on my forehead.

My husband took me to the A&E dept. today, on the advice of my rheumatology nurse. I only had to wait for a hour, before I was taken in to be seen by the doctor. They checked for meningitis and signs of a stroke! Luckily, I gained the all clear for those! But that put me back to square one. So I was discharged with three day's worth of diazepam. More pain relieve. :shock:

I can't sit up due to my headaches! Can they really just be caused by arthritis in the neck? It's a constant throbbing pain in the head, at times I only feel better lying down, do the GPs and consultants think that it is fine for you to stay in bed all day? I was told today that they are a type of tension headache! My husband said he thinks the young doctor didn't have a clue, and no one will until I'm seen by a consultant neurologist.

I've had enough so I've told him to go on the holiday alone. My husband has informed me that he will put me in with the luggage and still take me on the holiday! 8)

Starburst

Oh Lubs, you're not having much luck at the moment. When is your neuro appt? x

barbara12

Lubs I do feel for you, headaches from the neck are awful the only way I eased them was gentle exercise whilst having heat on it...but you must keep on at them, have you had an head MRI..just in case something else is going on..I do hope you can go on holiday with your OH..please let us know how you get on.

stickywicket

Lubs wrote:

I can't sit up due to my headaches! Can they really just be caused by arthritis in the neck? It's a constant throbbing pain in the head, at times I only feel better lying down, do the GPs and consultants think that it is fine for you to stay in bed all day?

Did you ask them what you should do, Lubs ie are you doing more harm by being up or by lying down? Only a doc can tell you this. Have you tried a neck support?

Lubs

Hi,

OMG this new drug is really good. It was supposed to make me dizzy or sleepy, but I'm very lucky and do not have that side effect. It's just removed the pain from my head and for the first time in a while I've been able to watch TV, sitting in an up right position without being light sensitive. I'm also up and about doing things around our small flat (I live in a two bed flat in the middle of town) but due to the headaches I've not been out in the last three weeks!

As some of you may know from a previous thread, I'm on a lot of medication, am trying to reduce the amount of morphine I'm on. I'm currently down from 100mg to 60mg a week. But now due to these headaches I've started an even more addictive drug - diazepam!

Don't get me wrong, I've been getting a message every night to relieve the tension in my neck, using hot oil. I've used hot microwaveable beanbags, with lavender and placed them on my neck. While on any car journey, even if it's only for two minutes, I find wearing a neck cushion helps support my neck during the potholes, which my husband can't avoid! I've tried to approach my GP and rheumatology team about a neck brace, but feel that wearing it will lead to weakening neck muscles.

This is something that frightens me and my husband, as yesterday the doctor in A&E was seriously investigating or looking for more signs of a stroke. I couldn't hold on her fingers, or push her away, which showed us how weak my right side is becoming.

I may just buy a neck support and keep it for the really bad times. I have to wait until the 28th August for my Neuro appointment before anyone can figure out what is wrong with me. I'm sure the consultant will find it funny that they've given me more pain relief , when in his letters (which I took with me) he says not to take!

Thanks

stickywicket

If I've understood you correctly, Lubs, the doc in A&E gave you diazepam and this has relieved the pain in your neck. I think you are right that it can be addictive but probably only if taken regularly over a period of time. How, and for how long, have you been told to take it?

I'm not quite sure when you write 'I've tried to approach my GP and rheumatology team about a neck brace, but feel that wearing it will lead to weakening neck muscles.' who feels that the neck muscles would be weakened – you or the docs. If the latter then be guided by them. The last thing you need is weakened neck muscles. I have very little movement left in my neck but I exercise it every day precisely to keep the muscles strong. My neck support lies in a drawer, invaluable on extremely rare occasions but no more than that.

I hope your planned US holiday will be after the neuro appointment. How did you manage the insurance with that hanging over you?

Well done on cutting back on the morphine. As for being given more pain relief when the consultant advised less – it was a good idea to take the letters with you but I guess the A&E doc is in a cleft stick – damned if she does and damned if she doesn't.

bubbadog

I suffer from really bad migraines so can slightly understand how you are, and I do get severe headaches some times as well. Funny thing is the severe headaches only happen when it's is going to be humid or a storm! I have been getting the migraines more and more regular recently I only used to have one a month and now it's more close to three a month now. Unfortunately finding something that helps takes a lot of hit and misses. I hope the Diazepam continues to help and you find something that will ease them soon.

Lubs

Hi

Unfortunately my GP has just prescribed the diazepam for a couple of weeks. I did exactly what the A&E doctor asked today. I told him that he must contact my neurologist and insist that they bring forward my hospital appointment. He just shrugged his shoulders, and said it won't do much!

He has instead prescribed me more diazepam and says it's like the morphine, addictive but you can be on it for some time. His exact words are 'we just need to control the symptoms', meaning the pain. My husband informed him we are going away, that was no problem for him.

Again I suggested a neck brace, especially for the car. However, the GP says we do not want your muscles in the neck to weaken. Well they are weak, at times I feel I can't hold my head up. So I insisted that I gain some Physiotheraphy as well.

So, it looks like I'm just stuck on this new drug diazepam until the 28th August. I will be going away before then, and insurance is fully aware of the neck issues. Hence, the problems I had with trying to find an insurance company that would cover my conditions.

stickywicket

It sounds as if your GP knows there is a long waiting list for the neurologist but doesn't feel you're in any actual danger while you wait, especially if he's happy for you to fly out to the USA. I think all he can do is control the symptoms as the underlying cause is a matter for the consultant.

I'm glad you're fully covered with insurance. I'd find it very scary flying to the States with something not covered. I guess, until you see the neurologist, you can only do what you think best vis-a-vis diazapam and morphine. I hope all goes well.

knuckleduster

I can totally sympathise with you, as the degeneration in my neck is now "advanced" and I have head pain constantly. Sometimes it is slight and liveable with, but other times I have to take to my bed. Instead of swallowing large amounts of medication I take myself off to my osteopath who gently relieves the pressure. I know I will have to visit him regularly until my days end and the expense will be horrendous, but rather that than being in constant bad pain. As for going out in the car, well I know my limits as far as distance is concerned and I'm always on the look out for potholes, etc. So it does somewhat limit us as far as travel is concerned, but I'm just thankful that I can at least get out and about locally.

Good luck with your neuro appointment and I hope you have a fantastic holiday.

Janet

Lubs

Thank you,

I know they've finally told me that I have arthritis in the neck, but when I originally asked about this lump behind my neck 6 years ago no one bothered to say you have arthritis in the neck! Or to check for it.

It's only when my spine started to curve at the top (which you can visibly see in the x-rays) I been diagnosed. All this pain I've felt, I've always dismissed it as nothing.

Well anyway, I've just got to make sure that I buy a better neck pillow for the car and plane, something that gives more support than the one I'm using (it's one of those from the motorway services). I also do not travel long distances in the car, we are planning on visiting my in laws in West Wales, which can only be planned by a long train journey.

We have also decided that we need to move out of the city and back to West Wales. Somewhere, I can sit in the garden when it's sunny! Or go for a walk into town or to his parents. At the moment, I'm surrounded by three high rise buildings, I lived on the top floor in out block. The young boys are out playing football against the gates, which will go on into the night. Sometimes, they will try to kick the football to hit our windows (4th floor). The parents, will leave the children out to play, while they are inside their flats. I've spoken to the concierge, who is also tired of these parents who leave their children out playing while they go out shopping. I'm tired of complaining.

I feel like a grumpy old women :x

stickywicket

If you're planning on moving, in view of all your health problems, do ensure your first priority is a good hospital, preferably a teaching one.

Lubs

Hi

Great news my persistence has paid off. I received a letter from the hospital today bringing forward my neurology appointment from the 28th August to the 21st July.

This means that I will be seen before going away on holiday to the states! I just kept on leaving polite messages for them on voice mail and then finally I also emailed the department to bring forward the appointment, informing them of my headaches.

Hopefully my GP also helped!

stickywicket

Good Do let's know how you get on, Lubs.