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Old 10-20-2005, 01:58 PM   #1
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No help from drs/headaches, dizziness, feeling strange

Hi. I am posting this for my husband. He is 35, and has had problems with headaches and dizziness and an 'unreal' feeling since he was 19. He has been to many doctors (NHS, he is British) and they all tell him that since he's lived with it for so many years, he might as well keep living with it. They won't even give him any type of test to see if anything is physically wrong.

He had his most negative experience with doctors today. He posted about it as a news item on a website that he has. (He is a web designer.) This is what he posted. I hope someone can provide us with some help.

Quote:
Totally let down by York doctors and the UK healthcare system
Iíve had this physical problem with my head for over 16 years now, at best I feel spaced and disoriented and at worst I feel dizzy and get headaches. I first went to see a doctor about it when I was 19, he didnít know what was wrong with me and sent me on my way with some placebos (found this out later). I figured that maybe it was a temporary thing, perhaps something that some teenagers go through, but it kept being the same year after year Ė dizziness, disorientation, and generally feeling spaced out all the time. Iíve been going to see a GP about once every three years (all different doctors as Iíve moved house a few times), hoping that just maybe one of them will know what Iím talking about and make positive suggestions. The only thing is every one of them after the first has based his or her diagnosis on what the previous doctor has written in my notes, nothing ever happens, nothing changes Ė all they ever do is talk to me for a few minutes and tell me that thereís probably nothing wrong with me if Iíve been feeling this way for so long, 3 years, 6 years, 9 years, 12 years and now 16 years, they all say the same thing and do the same thing, absolutely nothing!

I recently changed my doctor to the one next door to where I live and thought I may as well give him a try, itís been a few years after all so they might be able to help Ė also Iíve been getting tinnitus, worse headaches and more extreme dizziness this year so I thought I might be taken more seriously. Anyway, my new doctor spends a few minutes looking through my notes, speaks to me for two minutes, then, surprise surprise, says that he doesnít think there is anything wrong with me. I even plead with him that surly that fact that Iím sitting there telling him there is something wrong with me must count for something, to which he just shrugs and refers back to the notes like all the other doctors have. So I say what about the tinnitus then, thatís a new thing thatís not in the notes? So he concedes to arranging an appointment at the Ear, Nose and Throat department for me to have my ears checked out.


So today was my appointment at the hospital after a two-month wait, but hey Iíve been waiting 16 years for something concrete and physical to happen. I got my ears checked out and they are fine as far as my hearing goes; the doctor assures me that my tinnitus is just something that happens and that I can live with it, nothing bad is going to happen, which is all fine and good I suppose Ė but I donít really care about the tinnitus, I say, itís the headaches and dizziness that are bothering me, the tinnitus is just a bonus. He said that he was sure that I was fine but he could see that I was very disappointed, it wasnít his fault so I explained to him that Iíve had related problems since I was 19, Iím now 35, and nobody ever does anything, they just talk to me and send me on my way; I resign myself to the fact that nothing is going to happen right now and try again in a few years, itís a never-ending pattern of nothing happening and me getting sick of feeling spaced, dizzy, disoriented and now suffering from tinnitus and headaches too.


So at last something happens, he says I can have a scan to see if there is a problem Ė for the first time in 16 years someone is actually arranging for an actual physical look at me, theyíre actually going to do something! He looked in a draw to find the right form to fill in and couldnít find one, so he tells me to wait a while and I just sit there grinning, thinking how great it is that something might actually be done for meÖ But wait, while he went to find the form he had a talk with another doctor who reckoned that having a scan would be a bad thing for me, that if they did find something small it would freak me out or something. He came back and told me this, told me that theyíd decided I shouldnít have a scan after all Ė only minutes after Iíd been told absolutely that I could! I couldnít believe it, Iíd gone from feeling the most positive about my symptoms Iíve ever been, to been fully miserable about them in the space of 5 minutes. The guy he spoke to didnít even come and see me, didnít speak to me at all! Itís a new low in my journey to find a doctor that will listen to me and help me.


All I can do is try again in another three or four years now. Iíve often read about these people that get totally let down by their doctors and turn to alternative medicine, but Iíve always thought there was a conventional treatment for me if only just one doctor, just one of them would listen to me and help me out. I donít know how much alternative medicine could help me with this, but Iím seriously considering it now as it feel like I keep coming up against a brick wall with conventional GPs.
Sorry this is so long. If anybody has any idea what this could be, or how to get help, please let me know.

Thanks.

 
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Old 10-20-2005, 04:44 PM   #2
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Mz Migraine HB UserMz Migraine HB User
Re: No help from drs/headaches, dizziness, feeling strange

Since I live in the US, I do not know how things work in the UK.

Your husband needs to see a Neurologist that specializes in Migraines and Headaches.

Here, in the US you do not have to wait for a referral. You can go on your own (make your own appointment).
If it's a matter of finances, you can make *payment arraingements* or set up *some sort of payment schedule* with the doctor.
-------------
Quote:
Iíve been going to see a GP about once every three years
Why the big gap in years? Probably why the doctors think there is nothing *seriously* wrong with you.
Or is that they way doctor visits are scheduled in the UK?

I've been suffering from Migraines since 1996. Since that time, I see the my doctor(s) on average every 3-4 months.

 
Old 10-21-2005, 02:01 AM   #3
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Re: No help from drs/headaches, dizziness, feeling strange

Thanks for your help. First of all, I would like to say that I lived in the US for 39 years, and you do not automatically get to see a specialist without a referral. It depends on your insurance company.

That is my husband's problem. With the NHS, you have to see a GP, and the GP then has to refer you to a specialist. It has taken him this many years to finally have someone refer him to a specialist. (By the way, I have gynecological problems, and have had no problems getting an appointment for a specialist. The thing is, my problems are visible.)

The reason my husband has only gone to the doctor every couple of years is because he always comes back depressed and feeling miserable. And he knows that if he goes back, they are just going to tell him to deal with it. They just listen to him, read the notes from the previous visit, and don't even examine him.

I don't know how he can convince a doctor that someone needs to actually examine him, and that he needs a scan.

'We won't scan you because we might find something small and it might freak you out.' What kind of medical treatment is that? If they find something small, then they can treat it. And as my husband says, if he's been dealing with this for so long, what can possibly freak him out.

If anyone here (maybe a doctor or nurse) can provide us with advice on how he can actually get a proper examination, please let me know.

 
Old 10-21-2005, 11:25 AM   #4
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Re: No help from drs/headaches, dizziness, feeling strange

Quote:
First of all, I would like to say that I lived in the US for 39 years, and you do not automatically get to see a specialist without a referral. It depends on your insurance company.
Well, I've got you beat by a few years. I've lived in the USofA for 55 years.

And, yes you can see any type of doctor you damn well please no matter what type of insurance you have as long as your medical condition is *related*. You do not have to wait to be *referred*.
Most if not all insurance covers 2nd & 3rd opinions.

------------------

So in the UK, instead of going to a GP, your husband cannot just make his own appointment (without a referral) to a Neurologist that specializes in headaches/migraines?
This would be considered a 2nd or 3rd opinion.

I hope your husband finds some type of medical help soon. There is nothing worse than seeing a grown man who is suffering physical pain.

Good Luck!

 
Old 10-22-2005, 03:25 PM   #5
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Re: No help from drs/headaches, dizziness, feeling strange

hi marcia joy,am sorry to hear about your husbands suffering but can totally sympathise as i suffer severe daily headaches,dizziness etc etc for the last 5 years.
im also in the uk so have exact same problems with doctors!!!!! i dont get taken seriously at all, my doc think im just a depressed nutter.. im sure!!! after the amount of times ive broke out in tears in his surgery!! but its out of sheer frustration that no one will help me!!!
i finally got a scan done after 3 years of suffering but was only after i asked my doctor to refer me privatley for one, with that he said he could send me for one on the nhs!!!! i would recommend your husband sees his doctor again and say his symptoms are getting worse and hes getting concerned,and to say if he doesnt refer you for a scan then you would like to be refered privatley then. im sure he will then send you for one on the nhs,especially if he was so close to doing so before. also there should be a pain clinic in your area somewhere,maybe he could get reffered to one,i go every 3 months for pain shots,dont work for everyone but is worth a try.
i had 2 scans in the end and thousands of tests,but still nothing found. and as each day pass i feel more ill and pick up more symptoms to add to my long list!!! maybe sometimes there are just no answers to the pain!
i hope your husband find some luck in getting seen to!!

 
Old 10-23-2005, 04:43 AM   #6
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marciajoy HB User
Re: No help from drs/headaches, dizziness, feeling strange

Thanks Jellbeans.

I told my husband what you said, and he said he had already thought about asking to be referred privately, but he couldn't afford it. But I told him what you said about being referred to an NHS specialist after all, and he's thinking about it.

I am very sorry that no one has found any cure for your symptoms. I hope you're feeling better soon.

 
Old 10-23-2005, 02:43 PM   #7
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Re: No help from drs/headaches, dizziness, feeling strange

Hiya Marciajoy,
I completely sympathise with what your going through. I'm going through the same thing myself. I'm also from the UK.

I suffer from severe headaches which cause dizzyness, weakness, spots in front of eyes and sometimes I nearly pass out. No amount of pain medication works and because I've took so much over the last several months, I've stopped taking it all together so I don't become addicted. I've tried Paradox, Paracetamol and CoCodamol. CoCodamol was helping but now it isn't.

I'm from the UK too and the GP's here as useless. They make me so mad. I give up seeing the GP about my headaches as they never listen. They don't seem that interested.

I finally got the courage to see my GP because I was experience numbness and poor circulation now and was told my Asthma is causing my headaches. I nearly swung for the GP. It was obvious I was in pain as I had my cap pulled over my eyes to avoid direct sunlight but the GP didn't care. I was given absaloutely nothing for the pain or symptoms.

So honestly, I do understand how you feel. I'm thinking of going private myself. I've enquired at some headache clinics but they say I need a referral from my GP or a letter from my GP. I have no problem with them checking out my records but they wont find much there about the headaches since I hardly tell the GP about them because they do nothing. I was also looking into doing a MRI scan. I need a referral to do this privately also. A Rheumatologist is the only person I don't need a referral for so at least I can get my circulation sorted, lol.

I'm seeing my GP again tomorrow morning about the circulation and while I'm there I'm going to be firm and tell her I want a name of a Neurologist who specalises in headaches. She'll probably think I'm being a drama queen but I'm not bothered anymore. Headaches like these control your life and its horrible. If you haven't go your health what have you got? Good luck to you and your husband.


 
Old 10-25-2005, 02:24 AM   #8
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Re: No help from drs/headaches, dizziness, feeling strange

hi marcia, thought i would just let you know that going privatly isnt always as expensive as you would think.even though i dont think we should have to pay anyway!!!! but my local hospital does scans privatly for less than 300 ,depending on what they need to do.rather than the bigger private hospitals which are alot more like bupa. im sure your local hospital would offer the same service too,and you would get seen within 2 weeks. good luck!! x

 
Old 10-25-2005, 11:34 AM   #9
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marciajoy HB User
Re: No help from drs/headaches, dizziness, feeling strange

But you would still need a referral to the hospital wouldn't you, even if you were paying for it?


And how would my husband know which kind of scan to ask for? He would still need to see a neurologist first.

(Sorry, I only moved to the UK 6 months ago, so I don't know the rules very well.)

Last edited by marciajoy; 10-25-2005 at 11:35 AM.

 
Old 10-25-2005, 02:45 PM   #10
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Re: No help from drs/headaches, dizziness, feeling strange

Hi Marcia,

For a MRI scan which will rule out any medical problem (brain) causing the headaches you will need a referral. It costs around £120 for a first consulation with a neurologist and between £60-£80 for a 2nd consultation.

You don't need to see a neurologist for a scan. You can do a search on the internet for headache clinics with a MR/MRI scanner. To get this scan done on you rhusband you will have to pay. Its under £300. But, you'll need a written letter from your husbands GP or a referral from the GP. You can take this letter with you when your husband has the MRI scan.

 
Old 10-27-2005, 12:30 AM   #11
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Re: No help from drs/headaches, dizziness, feeling strange

hi marcia,my 2nd mri scan i went privatly for. you dont need any consultations when you go privatly,the price you pay is just for the scan and they send the results straight to your doctor.
yes you will need a doctors referal,but i never even saw my doctor for mine,i just phoned my surgery and left a message with his secetary.they will send the letter or fax to the hospital and when they recieve it you then phone that hospital to arrange your appointment,the radiologist would have read the refferal letter and already would have decided what sort of scan etc needed so the you will be given the price when you make your appiontment. and that will be the price you pay,no hidden extras!!! the results would be sent to your doctor a few days after and you will be able to phone for them. hope this helps any more questions just ask!
but if you do decide to go privatly it would be cheaper to go to a nhs hospital with the scans as they are not so expensive and prob would be around the 300 mark .

 
Old 10-27-2005, 12:31 AM   #12
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Re: No help from drs/headaches, dizziness, feeling strange

hi marcia,my 2nd mri scan i went privatly for. you dont need any consultations when you go privatly,the price you pay is just for the scan and they send the results straight to your doctor.
yes you will need a doctors referal,but i never even saw my doctor for mine,i just phoned my surgery and left a message with his secetary.they will send the letter or fax to the hospital and when they recieve it you then phone that hospital to arrange your appointment,the radiologist would have read the refferal letter and already would have decided what sort of scan etc needed so the you will be given the price when you make your appiontment. and that will be the price you pay,no hidden extras!!! the results would be sent to your doctor a few days after and you will be able to phone for them. hope this helps any more questions just ask!
but if you do decide to go privatly it would be cheaper to go to a nhs hospital with the scans as they are not so expensive and prob would be around the 300 mark .

 
Old 10-31-2005, 03:26 AM   #13
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Re: No help from drs/headaches, dizziness, feeling strange

can you explain a bit more about the "unreal" strange feeling, and what you mean by that

 
Old 10-31-2005, 11:37 AM   #14
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marciajoy HB User
Re: No help from drs/headaches, dizziness, feeling strange

Well, it's not me who has the feeling, so I can only report what I've been told. He says it feels like he's asleep, and he's going to wake up. Like his real life is a dream. I imagine it is like the feeling you have when you are having a lucid dream, when you know that you are dreaming, which is fine, because when you are having a lucid dream you really are dreaming. But in my husband's case, he has that feeling even though he is awake.

From an observer's perspective, though, he doesn't seem disoriented or like he doesn't know where he is or is in any way confused. He functions perfectly well throughout the day. The only way I know that he has this strange feeling all the time is that he tells me. Maybe that is why he doesn't get much help, because he doesn't look or act like there's something wrong with him.

 
Old 11-01-2005, 11:21 AM   #15
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Re: No help from drs/headaches, dizziness, feeling strange

Quote:
Originally Posted by marciajoy
Well, it's not me who has the feeling, so I can only report what I've been told. He says it feels like he's asleep, and he's going to wake up. Like his real life is a dream. I imagine it is like the feeling you have when you are having a lucid dream, when you know that you are dreaming, which is fine, because when you are having a lucid dream you really are dreaming. But in my husband's case, he has that feeling even though he is awake.

From an observer's perspective, though, he doesn't seem disoriented or like he doesn't know where he is or is in any way confused. He functions perfectly well throughout the day. The only way I know that he has this strange feeling all the time is that he tells me. Maybe that is why he doesn't get much help, because he doesn't look or act like there's something wrong with him.
The only reason I asked was because I have the same symptoms with the headaches and feeling strange all the time.

My problems started happening when I was about 10 (I'm 22 now). They did all kinds of blood tests and ct scans, and I even saw an ent doctor but they found nothing. At the time I felt it hard to explain fully how my head was feeling, and they didnít take it seriously, they always thought I meant dizziness or light-headed, but its not quite like that.
After a while I think they just thought I was putting it on, to maybe skip school. So I thought I'll just have to put up with it.

A couple of years later when I was about 15 I started to feel worse and now very tired. The doctor noticed heart rate was very quick, so some tests on the heart were done. But all was normal.

Now I've recently moved house, and now going to a new doctor, who seems more hopeful and willing to listen. He wants me to do some more blood tests again so he can rule out some things as symptoms are worse. He also seems open to me possibly having an mri (which is the one test I have never had) or seeing a neuro, so I'm more optimistic.

I can completly understand how your husband must feel and know how frustrating it can be. At times I thought I was going crazy, at least now I know I'm not the only one with these head problems.
But tell your husband not to give up and let us know how he gets on at a neuro if you manage to get it done privately.

Also is there any other doctor in the area he could try or has he got his mind made up on going privately?

 
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