I wrote yesterday about going to see a neurologist and thought I would let you know how I got on.
First of all it was a major drama trying to get to the hospital, I had to take the afternoon off work and had arranged for someone to cover me. The person who usually covers my lunch from 12-1 was poorly so my manager said I would have to work through til one. I tried to tell her that my apt was at 1.15 and I would need time to travel to the hospital, she said if my apt was at 1.15 then 15minutes travel time was enough, explained that the hospital is at least a 45 minute drive and she said she technically only has to give me my apt time off so what was my problem... I swear to God I would have be able to explain quantum physics to a toddler better than explaining anything to this woman!
I arrived 20 minutes late for my apt but luckily they were running behind so I could still be seen.
The nuero had got me to complete a headache diary for 6 months so we went through it to try and see if I was any better, even though I get headaches almost daily they dont really bother me they are just a pest.
I explained about having dizzy spell, blurred vision, pressure and rushing in my head when standing, but he was only interested in the headaches.
This is what he suggested to me:
1. I stop taking anti-inflammotories
2. I stop taking all painkillers. Paracetamol, co-codamol, tramadol and dihyrocodeine.
3. I stop taking steroids.
4. I stop having steroid injections.
Obviously I thought this was him having a joke but when I asked him if he was serious he assured me that he was.
He also said that lupus patients do not normally suffer from migraines or headaches so the 2 are not assosiated.
He said he doesnt think my primary problem is lupus, he thinks I am having migrains. I told him I thought that the pain was supposed to be awful with migrain and the headaches I get are only niggly.
All in all it was a bit of a disaster, I told him that I would most definately not be stopping any of my medications as professor D'Cruz has worked very hard getting me to a semi stable state and stopping medication would surely send me into a rather big flare.
He said he is not there to control the lupus he is only able to treat headaches, I said surely he should be looking at the whole picture rather than just one symptom.
We went round and round in circles and in the end I asked him to discharge me from his care as I do not think he is experienced enough to deal with such complex medical conditions.
How annoying!!
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Dumpypug
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He has obviously never heard of the "lupus headache", which is similar to migranes? I get nasty headaches around twice a year, where I can't get out of bed properly and get dizzy spells. I always take paracetamol, which I promptly throw up again and then go to sleep for a few hours. In between this, I also get the odd random headache.
There is nothing worse than an allegedly experienced consultant making you feel like you are either wasting their time or being a complete hypochondriac, which I have had for the past 14 years, until I finally got a diagnosis. Maybe Prof. D'Cruz can find someone who is better equipped to deal with lupus and is able to look at you as a whole, rather than the individual symptom?
Who IS this guy??? He obviously likes to deal with neat little problems that fit into neat little boxes without having to deal with the reality of a human body. Unbelievable!! You definitely need to go elsewhere and think about making a complaint too. Doctors are supposed to collaborate with the other physicians treating you, not ignore everyone.
I cant believe that. it is dangerous even lethal not to be taking anything for lupus.
ive had lupus roughly 23 yrs not had that many headaches, but i had cancer last year and since i had the surgery im getting blinding headaches, some nauseas, once i lost my vision totally, when my eyes totally dried out, but they seem to be getting more often,
He had a point, that is his job. Neurology is a complex area and if you are already seeing a lupus specialist then I would have thought he would be the key. We are often referred (usually by GPs) because people don't know what to do with us. The point if your appt was to make sure there is nothing underlying going on aside from the lupus. I know it's frustrating as it is a continuing never ending saga for me but we have to be glad to get these appts because if you always assume its a part of your condition then one day it just may not be and then there maybe trouble, which I can relate to. So yes it may seem a waste if time but if it saves us from something else then we should run with it
It's so frustrating when the different Hospital departments don't work in conjunction with each other. This is always to our detrement!
But it's us that are not being treated as if we have a complete body problem. Why not take it up with your Rheumy... Rule out anything brain wise - then move forward with the obvious.
I have a similar thing going on with a Urologist at the moment.
So sorry you have had a bad experience & hope you can get some help from other practicioners!!
Sounds a lot like my Neuro consult. He also reported to my GP/rheumy that he didnt believe my symptoms were real -they BOTH were concerned with weakness on rt side, after doing tests, orthopaedic consult was also - neuro did NO test & concluded I was lying, abusing pain meds I have no need for & instead need sedating!
Worst bit... they are all following his recommendation!!!
Thats awful, it really annoys me when we get fobbed off like this. Funnily enough though my GP suggested that maybe my symptoms were to do with stress and could be phsyco-samatic, then when I went to see prof D'Cruz and came back with a long list of medical conditions he very quickly back tracked.
Luckily, my GP is really good and has done a lot of research so is fairly up to date now.
I understand what you're saying but the Dr I saw refused to read any reports from my lupus specialist, he refused to read a list of symptoms I had prepared, he would only talk about the headaches and he performed no tests at all.
My lupus specialist had told me that when I was admitted to hospital earlier that year that the hospital had not done the right scans to rule out a stroke and it was the hospital Dr that referred me to the neurologist, my specialist just said to go along as the apt had already been made.
The referral letter from the hospital stated that they had done the wrong scans and had given me the wrong medication and a poor junior Dr got the blame.
I havent really had any reassurance that there is nothing underlying with my brain as he didnt do any tests and was focussed on one aspect of my problem. Surely he should have been looking at the bigger picture to determine what symptoms could be related to brain involvement.
I just feel that I have been fobbed off as he doesnt know enough about Lupus, to say that headaches are not assosiated with Lupus or anti-phospholipid tells me that he lacks experience.
I think many of us have had the experience of coming up against Drs that dont understand lupus and it is so frustrating, it sounds like you have also been in this position, I honestly think this is dangerous for us to see Drs who dont understand.
Luckily I have enough knowledge to say that I am definitely not stopping my medication as he suggested, but for someone who is newly diagnosed and just learning the do's and don'ts, if they had followed his advice I dread to think what state they would be in.
I'm sorry but I cant bring myself to be grateful for apts with Drs like this, I've had too much trouble and too much heartache in the past. I'm in the mess I am now beacause my old rhuematologist thought that to have lupus you had to have both the dsDNA antibody and a butterfly rash, and even though I had persistantly positive anti phospholipid tests and 7 miscarriages that I was too young for a stroke so APS shouldnt effect me, infact he knew for 5 years that I had APS but didnt think I needed to know about it.
I just hope that one day lupus will get the recognition it deserves and we wont have to fight to get treatment
I gather that there is a condition of mostly continuous headaches that are caused by taking too many painkillers, eg more than three painkillers a week over a long period of time, think its called "painkiller or rebound headache" and medical advice is usually to stop taking all painkillers, this includes anti-inflammatories. Not sure if steroids contain a painkiller as well. Perhaps that was possibly his reasoning, but surely he would know that someone with lupus cannot just stop taking such medication, but then I guess he is a neurologist and not a lupus specialist so who knows. If he did think along those lines then perhaps he should have referred you to the pain clinic for alternatives.
Hi, I think the headaches I get are related to the painkillers I take and when I have to increase painkillers my headache gets worse so pretty sure the 2 are linked. The headaches dont really worry me, I am more concerned about dizziness, pressure and rushing and not being able to process sounds and difficultiy with vision, all points that he wouldnt discuss.
In an ideal world I would love to off painkillers but I know that it just isnt possible at the moment.
Its really irresponsible to even suggest it, as you said you cant just stop taking them.
I like your idea about the pain clinic, I think I'll get more of a benefit from that.
Hi, awful that you had this happen to you, although at some point it has happened to us all.
Since early last year I have had progressively bad headaches, they have brought with them dizziness and loss of eyesight. I couldn't turn my neck very far either side or I would blackout. I was admitted to hospital where they did x-rays then CT scan and a lumber puncture.I collapsed whilst on the ward and was put on all the machines etc and even coughing would send the machine off. The lumber came back with raised presure but everything else was ok. They sent me up to a ward wherei saw a doc. He recognised my symptoms right away. He said that it was all coming from my neck. He actually had a similar thing whilst in medical school. He said it can be caused by long term putting school bags and handbags etc over shoulder causing your neck muscles and shoulder muscles to tighten to such a point were they cause problems in your head(I have a large bust with shoulder straps adding to the problem). He suggested physio and head/neck and shoulder massage. I was a bit sceptical but have done as he suggested and I am now a lot better than I was and never put a handbag on my shoulders. Stress can make it worse as we tense our neck muscles. I know its a long shot but could this be something to do with your headaches. Feel the back of your neck, is it tight? Go from your shoulders up to the back of your head if you can feel tightness then this could be your problem. Even if you get your husband/partner/friend to massage gently so releasing the muscles slowly might help.
OMG yet my rheumy asks me every time how the headaches are and they are most definately part of the Lupus since taking plaquinel my migraines were frequent and severe before now less so I'm so glad I have a very good doctor
I get bad heads all the time and can't get out of bed, have to sleep it off or wait until i am sick then sleep it off. i would never stop taking my pills. When they review my pills one doctor put me on a low mg and i got so ill i went into hospital so won't stop, i have had lupus for 30 years if it wasn't for my pills i wouldn't be here today.
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