• Good luck 🤞

    Not sure if I am right Lucy.


    Seems to work during the day but all goes kind of tits up at night...


    Either I haven't got a baseline level of meds in my system yet or I have totally stuffed up.


    Anyway, seeing my neuro on Monday. Going to throw myself at her mercy.

  • Last day off work today,so just had a late breakfast,and soon getting rugged up and walking to the allotments,to just take up some compost I have here.After that?Relax and enjoy the day doing pretty much nothing!

  • Sitting here feeling really fecking annoyed.


    After 6 weeks, 6 doctors (one I saw twice), a chest X-ray, a referral to ENT at Aberdeen, one ENT consultant at Aberdeen, a referral for an MRI at Inverness, and a referral for an ENT appointment (in February...) in Inverness, 2 sets on ear drops, 2 nasal sprays, a course of Keflex, diazepam, amitriptyline and syringing (sounds like that carol, I should add 'a partridge in a... etc. etc.).

    None of the doctors paid any attention to one thing I actually stopped mentioning because none of them paid attention to it, that ended up actually mattering, but I mentioned it to the ENT consultant, who also ignored it...the tinnitus started when the drug titration ended, the 'headaches' got worse throughout, as did the sore throat and ear pain.


    I when I found out that the ENT appointment was in February, I looked up how to add Valproate back onto Lamotrigine and Topamax.

    I started on the Wednesday and by the time I had a telephone appointment with my neurologist on the next Monday (where I expected to get ripped to shreds) she told me to keep going and explained how it all worked. I had emailed her the saga before the appointment.

    6 good things came out of this - my chest x-ray is clear, my hearing is fine, my sinuses are fine, I learned how to add sodium valproate onto lamotrigine, which is quite complex pharmacokinetically as they compete for glucocorticoid for clearance (- ya, boo, sucks, University of Aberdeen. However, not the first drug titration I've done myself....), the tinnitus is hugely reduced and I have discovered I get migraines - not bloody tension headaches, stress, or drug side effects - freaking migraines.


    Valproate is a migraine prophylactic as well as an AED.

    Lamotrigine can cause headaches as a side effect.

    Topamax is also a migraine drug.

    Take away a migraine prophylactic from someone who gets migraines and give them a drug that can cause headaches... then put them under stress...

    Tinnitus can be a symptom of migraines (what do you know, I didn't...)

    The ENT consultant said the headaches were migrainous but didn't do anything and a friend who has migraines said that tinnitus and really awful headaches could be linked but I didn't believe her as it had gone on so long and didn't pursue it.

    Perhaps if I had done something earlier or the ENT consultant had acted on her diagnosis.

    Since adding more valproate and reducing the lamotrigine the tinnitus has reduced to the point that now I can barely hear it but I'm terrified to go to sleep in case I wake up and it is loud again.

    Logically I know this won't happen. However, psychologically it is hard to get my head around.


    Really annoyed that for the 2nd time I've had to resort to altering my own medication because doctors don't seem to really listen to patients.


    Please don't anyone tell me I have a bad patient attitude or haven't been getting my message across coherently. I tried writing it down in a timeline - dismissed at the first word she couldn't read and it was printed. Screaming down a surgery in frustration - it got the chest x-ray and ENT referral.


    The control of my epilepsy was on the way out by the time I took matters into my own hands and had been declared as urgent as February.


    The only one who gave a rat's arse was my neuro who didn't wan't me to travel to see her and is helping me get my train fair back.


    Really, really really hacked off just now. So very pissed off that I have to rely on them for prescriptions. I can think of 3 locally who dismissed the drugs and my 'headaches' who will be reminded of this if I'm unlucky enough to meet them again for a long time.


    Luce please don't freak. It's a great drug it just seems that at last it has been discovered that I get crap migraines; looking back on past events possibly vestibular - they couldn't come up with an answer for why I was getting dizzy, passing out, sore ears and blistering headaches on levetiracetam and blamed the headaches on levetiracetam....


    On Topamax alone I got dizzy a couple of times.


    Most of the rest of my life I've been on valproate and .....


    :wall::wall::wall:

    There's no place like 11000000.10101000.00000001.00000001 :evil:

    The post was edited 1 time, last by Daisysmum: medical crap ().

  • You will get there eventually Daisysmum. I had a phone call today from hospital physiotherapy dept. They want to transfer me to another hospital. They originally wanted me to be a inpatient for three weeks. I hoped I could come home at the weekends, now they think I will have more options at another hospital where there’s a working therapy pool.


    Also after being told that Pilates classes and using a Gym ball is too aggressive exercise for my injury. I bought a new boxed gym ball for 50p from the carboot on Sunday. I’m going to try a Little and often. Like you Daisysmum I’m thinking Its better to try help yourself than to be dragged along with a underfunded NHS.

  • Had a lovely day so far.Just returned from a 2 hr trek across countryside alone!I thrive on the peace and tranquility,and the weather is actually ok today too.Expecting OH home for lunch,then will spend the arvo potting about,a few jobs here and there,yoga,abit of surfing the web!

  • We are having fairly mild weather, so I've stuck the birds in the aviary for a couple of hours. It is so peaceful, at least it was until I logged in here. The dog (Spot) has started whinging on, presumably because I have sat down and he wants to go for a run. He can wait until I've had a cuppa. :rolleyes:

    If men bore wings and had black feathers, few would be intelligent enough to be crows.

  • You will get there eventually Daisysmum. I had a phone call today from hospital physiotherapy dept. They want to transfer me to another hospital. They originally wanted me to be a inpatient for three weeks. I hoped I could come home at the weekends, now they think I will have more options at another hospital where there’s a working therapy pool.


    Also after being told that Pilates classes and using a Gym ball is too aggressive exercise for my injury. I bought a new boxed gym ball for 50p from the carboot on Sunday. I’m going to try a Little and often. Like you Daisysmum I’m thinking Its better to try help yourself than to be dragged along with a underfunded NHS.

    Thing is adding Valproate to Lamotrigine is risky because of the potential side effects. I've had a neurologist botch it up minor scale on me thrice, so I know what the side effects of it all going tits up are; also I'm not naive to the drug, I took it before in smaller dosages.

    Thing is, if I wasn't me I'd still be listening to that god awful howling and feeling like my head and sinuses were going to explode because they were so freaking tight.

    OK I didn't make the jump to migraines, but I did make the leap to the end of the drug titration.

    Sent a nice email to Pharmacology - I thought it was an interesting pharmacological/physiological illustration of pharmacodynamics/pharmacokinetics..... they haven't replied...

  • Writing...

    Sick of the internet and the antics of window-lickers in charge of the western world intent on destroying whatever good is left, Ive decided to return to writing (by hand,ya know akchul hand writing with a pen with ink :shock:).Apart from drawing i need another creative avenue to explore.


    Had this discussion earlier with a friend and weve decided to write letters to each other ,not type emails. Time to return some slow culture to life...:/

  • Writing...

    Sick of the internet and the antics of window-lickers in charge of the western world intent on destroying whatever good is left, Ive decided to return to writing (by hand,ya know akchul hand writing with a pen with ink :shock:).Apart from drawing i need another creative avenue to explore.


    Had this discussion earlier with a friend and weve decided to write letters to each other ,not type emails. Time to return some slow culture to life...:/

    If you want to go really retro, i can send you a hand made quill pen (i use Mary Macaw's feathers) if you have an address to post it to. 8)

    If men bore wings and had black feathers, few would be intelligent enough to be crows.

  • If you want to go really retro, i can send you a hand made quill pen (i use Mary Macaw's feathers) if you have an address to post it to. 8)

    Sounds interesting...does Mary Macaw mind you pulling her feathers out lol....so who makes the pens ? you ? I used to make them from Black Back Gull feathers. Ill have to buy ink (which ive not done for 40 years.)8)

  • Sounds interesting...does Mary Macaw mind you pulling her feathers out lol....so who makes the pens ? you ? I used to make them from Black Back Gull feathers. Ill have to buy ink (which ive not done for 40 years.)8)

    i wouldn't dream of pulling her feathers - or those of any bird, half of them come to me bald as it is!


    She moults them, and I put a nib on the end to make them into pens.

    If men bore wings and had black feathers, few would be intelligent enough to be crows.