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Thread: No-one is taking me seriously

  1. #1

    Default No-one is taking me seriously

    Newbie here

    If it makes an difference, I am from the UK.

    In short:
    - diagnosed at 4 with Nystagmus and parents were told there's no cause for it.
    - at the age of 7, I had a CT scan because I kept getting headaches. My parents were told everything was fine
    - have a history of seizures; but was never put on medication for it and parents were made out to be over reacting
    - has seizure around 11, had EEG and was told it was fine
    - from age of 14-16 had migraines

    At the age of 17, I ended up with a neck injury and was given physio

    At the age of 21, I managed to aggravate the injury and was referred to neurology.

    No-one could agree on diagnosis and I was given an MRI scan. Ended up with a few MRI scans because no-one could work out what was wrong. At one point, they believed I have a mild from of Spina Bifida because of how I walk.

    Finally ended up with a diagnosis of Arachnoid cysts and was told neurologist doesn't know the prognosis. Someone has taken this as there's nothing wrong.

    That was 2 years ago.

    I have spent the best part of the last year ill. I have constant headaches and what can only be described as constant pressure in my head, which is starting to get rather painful. This is almost daily now.

    I have seen nearly every GP at my surgery about this. Only one has decided to give me tests - MRI and blood test. No change from 2 years ago from MRI and blood tests are normal.

    I've just had medication after medication chucked at me. I appear to be the only one concerned about the constant pain.

    I am currently in the situation where I'm having to consider giving up my education because of the pain and how unpredictable this is becoming.

    I've been on numerous medication, which either doesn't work or gives some really unwanted side effects. I currently take 500mg Gabapentin daily. Before this, I was on 600mg, which was 300mg twice a day. Because I was only taking it twice a day and taking it three times a day previously, I would get chronic headaches around 3-4pm. According to the leaflet I have, Gabapentin can cause headaches. So, I don't know how much of my pain is down to AC or my medication. The leaflet also mentions depression. I have a history of depression, which the doctors know about. I have spent the last few days with such an episode. I have no idea whether the medication has anything to do with this.

    We're just over half way through the year. I'm into double figures on the amount of doctors appointments I've had over this.

    I am just getting fed up now. I am Autistic and I am convinced that because of this, they are doing as little as possible to help me. Either that, or someone thinks I'm just being a hypochondriac.

    Someone has suggested changing surgeries. But I am worried the same thing is just going to happen again.

    Advice please?

  2. #2
    Distinguished Community Member agate's Avatar
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    Default

    Hi Melian,
    I don't usually visit any forums here except the MS forum but I happened to notice your thread--and see that you're new here. Welcome!

    It sounds as if you're about 23 now--? Severe headaches are a big problem for you if I read your post right.

    Are there headache clinics in the UK? I know that these exist in the US, and they seem to specialize in addressing any and all headache issues. But you seem to have explored many resources already.

    This link might give some useful information:

    http://www.ninds.nih.gov/disorders/a...noid_cysts.htm

    Sorry I can't be more helpful. Maybe others will be able to add something useful for you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #3
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    My thought about this is to reconsider whether Arachnoid Cysts is the true diagnosis.

  4. #4
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    Default Don't give up

    Melian,
    Top priority for you is to get a proper diagnosis. Of course you want your headaches to be treated, but most important is to identify the underlying cause. Drugs can mask the effects of your condition {whatever that is}, but probably won't cure it. The way things work in the real world is that if you have a condition which cannot be identified, but which responds to treatment you will receive treatment and that's it.

    Medical people are human. They are doing a job and treat hundreds, thousands maybe, of people many of which, like you, have complex or unidentified conditions. If your notes or medical file is not on their desks staring at them, demanding attention, you will be forgotten about. That's the brutal truth.

    I think, despite the criticism it gets, the NHS is a fantastic organization and you can get treatment that compares with the best available anywhere in the world provided your GP is prepared to put himself/herself out for you. I speak from bitter experience here. First of all you have to understand that the NHS won't come looking for you to offer treatment. You have to demand it and it is essential to have your GP on your side because he/she is the gatekeeper to the whole system.

    Be persistent and if you come to the conclusion your GP is not taking you seriously or can't be bothered to go the extra mile on your behalf, then change GP's. It isn't difficult and when you find a good one stick to him/her like glue!

    I found that once you have got a consultant really interested in your case (you have to be referred by your GP of course) everything follows from there. Until then you are floundering around in the dark. The stress and uncertainty is probably contributing considerably to your mental state and headaches.

    So be persistent. If you are not satisfied with the responses you are getting, don't be fobbed off. Even if your GP "sacks" you, i.e. tells you to find another doctor(I had this done to me), don't be put off. If things have got to that point, that particular GP is never going to be of any use to you anyway. It's your life and it's your NHS. You are entitled to good treatment even if your condition is unusual or complex but you may have to assert yourself to get it.

    Good luck,

    Mick
    Last edited by mickinuk; 07-20-2014 at 11:22 PM.

  5. #5

    Default

    Thank you for your replies. :) I'm now 25, btw.

    I have to admit that I am rather concerned about the amount of medication I'm having to take just to deal with this. When they put me on Gabapentin, I was having to use a nasal spray because it would give me a blocked nose. And since the dose was upped, I've had a constant dry throat and the only thing that works is throat sweets. The GP I saw on Friday, just told me to live with it. Or change the dose to 500mg to see if that makes a difference. It hasn't; but I don't think a few days really is enough to decide whether it's made that much difference?

    I've never had any GP tell me to find another doctor. They've all just chucked medication at me and when I've not been happy, I've then ended up seeing someone else. And repeat.

    I have spoken to a friend of mine who is a GP (not mine) and he said that what's happened is normal. They don't tend to do anything until you've started having seizures.

  6. #6
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    Melian,
    Why don't you ask to be referred to a consultant neurologist to look at your condition afresh. New pair of eyes and that sort of thing. Let your GP(s) know you are not happy about taking high levels of medication without a proper diagnosis. Don't worry about too many doctor visits. In my experience, I'm sorry to say, being a pain in someone's arse does get things done.

    Mick

  7. #7

    Default

    Thanks.

    I did contact the Brain and Spine Foundation. They did tell me that this is normal and it's generally either medication or surgery. They did mention getting the pressure in my eyes tested and something about cranial osteopathy.

    I getting no relief from the medication I'm on. They changed the dose (600mg / 2 x 300mg to 500mg / 5 x 100mg to be taken 3 times a day) on Friday and it's not helped me at all.

  8. #8

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    This is getting ridiculous now:
    They're running out of options; but won't let me see the neurologist because "they can't do anything". Right, one of the treatments for my condition is surgery.

    They've upped my Gabapentin despite the fact that it gives me a blocked nose and sore / dry throat.

    Every GP I've seen over this, (I've seen all but 3 at my surgery in the last year over this) tells me that my headaches have nothing to do with my arachnoid cysts.

  9. #9
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Melian)))))) ~

    Welcome to BrainTalk!

    Here's a link to the drug info on Gabapentin:

    http://www.nlm.nih.gov/medlineplus/d...s/a694007.html

    Listed side effects include headaches, as you stated. Doctors are often loathe to accept that symptoms are related to drug side effects. There are just too many pharmaceuticals for doctors to really understand fully how they affect patients adversely.

    My question is: what is the Gabapentin supposed to be treating for you? Headaches? Seizures? Neuropathy?

    You mention that you've taken an assortment of medications, some which were ineffective, others with adverse side effects. Depending upon what the drug is intended to treat, are there any other drug options for you besides Gabapentin? This might be something worth asking your doctor. You could also contact your chemist/pharmacist for advice about appropriate drugs for your condition, other than Gabapentin.

    Perhaps you might find some help from:

    http://www.autism.org.uk/

    You might ask whether they offer advocates to assist with medical issues or whether they can offer you referrals to neurologists and neurosurgeons, who might be more compassionate toward you.

    I'm so sorry that you are suffering, and I hope you'll find relief soon.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  10. #10

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    Thanks Rose. In the last year, I've had:
    Paracetamol and ibuprofen
    Paracetamol and aspirin
    Amitriptylne
    Gabapetin

    It's for headaches.

    Been told they won't give me beta blockers because of my asthma. They tend told me to take aspirin, which can cause problems for people with asthma. My asthma isn't triggered by medication. They claim there's nothing else they can give me either. But won't refer me.

    My blocked nose is apparently hayfever, Never had that. Oh, and I've had problems with a blocked nose since January. And I've only had one cold this year, which was April.

    Have given up taking Gabapentin. It's not doing anything at all for me. Apart from giving me a really dry throat and a blocked nose.

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