Scans

Hi everybody

thought i'd update as haven't been on for a while.

I have changed doctors and asked for a referral for a neurologist.

I have been and they have referred me for MRI scans for the veins and arteries in my head- this is in a few weeks. If there is anything untoward then i may need draining around my eye or a needle puncture to release the pressure around my brain.

I really hope this works, but recommend anyone to see a neurologist for advice.

Many thanks!

12 Replies

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  • Hello. I eventually saw an NHS neurologist, but I couldn't understand him; not from this country. Seen him twice now. He sent me for an MRI scan after first visit. He told me he was happy with the result but the second guesser wanted a further scan done due to a fluid filled vessel. He could not tell me more. I thought the the MRI scan showed the most, apparently not. He told me to cease triptan at first visit which I did; I believe he told me I could take 800 mg ibrufen, but no more than once a week, which I then did. On second OPD he told me that I should have stopped all such meds, and that ibrufen can cause further headaches. But as per the 123 diet by Dr Buchholz, they do not cause these rebound headaches. Give up. I should have asked him to explain. My hopes have been ruined by this neurologist because I was hoping beyond hope for the best care. At second OPD he asked if things had improved, and they had. He did not ask about intensity or frequency. I am a nurse; I assess better than he does. I should have pushed for a beta blocked but I suppose I wanted to carry on with my elimination diet; which so far is useless, despite eating porridge, gluten free and water for 3 days. If its not the oats, then knowing my luck it will be the water. I am really starting to give up.

  • I understand how you feel- i've had very regular migraines for 17 years and seems to be getting worse, been on all the meds from the GP that they throw, have now detoxed off them and now rely on sumatriptan which causes neck and joint pain, and Paracetamol 500mg/ Metclopramide 5mg effervescent powder sugar free sachets which seem to help but need this daily. I do really hope they will find something in the scans and that i'm not going crazy but hearing your story i'm getting a little worried. Gluten may affect some migraines, but have you written a food diary to see what food you regularly eat and what could be a trigger? I've cut out orange foods, citrus, chocolate and am trying to cut down on caffeine, but for me there's no definitive trigger. Please don't give up, we are all in the same boat and it's nice actually having people understand what you're going through so we can stand up and talk together. Don't hesitate to message me :)

  • I have also used beta blockers and this doesn't seem to help for me either- have tried a few. Have you tried Hijama/ cupping therapy for some relief? I have heard some people have had Daith piercings as this is in a pressure point and seems to help.

  • Thank you for your interest. I completed a food diary for about 2 months and only gave up a few days ago. It just takes too long and I couldn't find anything other than milk that now gives me belly ache. I got back to basics, much more strict than my 123 elimination diet. I tried non gluten oats and water for 3 days. No good, but too much of any one thing can raise the trigger. Can't be water, so now I am trying buckwheat and rice milk - although rice milk has things other than rice in it. All to no avail. I cannot stand such safe food anymore. Now I am just eliminating the foods that the book suggests. No good for the last 2 days but I did eat overripe strawberries. As another forum member said - just pass me the rope! I am concerned about beta blockers just in case they don't work, and other than amytriptaline, what is left? I don't mind amytriptaline, but escalipram and sertaline gave me such nightmares every night that in turn caused morning migraines, and I kept on them in total for 3 mths. I have not faith in my present neurologist at Walton Neuro Centre, but what can they do apart from give meds and organise scans? Nothing. Advice from him is virtually none existent, hence forums such as this. Keep in touch.

  • Thanks for replying.

    At least you're trying all you can to eliminate what can be a trigger, but from experience too, determining what is actually a trigger is so difficult and time consuming. I found before dairy can affect me, so occasionally have semi skimmed milk- i did like soya milk or almond milk but this would curdle in my drinks so decided against it in the end. Soya yogurts etc are really tasty so i tend to eat this instead of normal milk based. I also found a lot of high carb food like bread can give me migraines, and fatty meats so i try to avoid these too. It seems to be different for everyone but as you've stated, it can quickly limit what one can eat.

    Could you give me some more info on this 123 diet? Is there a booklet online as only from you have i heard about it.

    I've tried a few beta blockers and they don't work- but research for yourself and see if anything does. We can only keep trying.

    Apart from scans and meds, have you been referred for eye scans? I have a lumbar puncture procedure coming up so they can analyse my spinal fluid and determine any neurological issues, but they also mentioned about a blockage in my left eye which could cause these problems so i'm really hoping something will be found so i know i'm not as crazy as i think i am.

    These forums are a god send, and at least we can all keep in touch and support each other.

    All the best and keep in touch.

  • Hi again. I now only drink H20 and naturally caffeine free camomile leaves in the form of a 'tea' bag. At first I thought they were not nice - the smell was not to my liking and if I recall correctly, they tasted wrong, but it is now 6 months since I stated them and I can't recall what the taste was like then. After the about 40 cups I got used to them, and now look forward to them. How taste can change. I did try fruit teas also, lots of them and quite highly priced, but they all tasted so bland; and some did have added things in them like flavouring (potential MSG, so a no-no), so who needs them if they were bland? In the beginning I also tried decaf tea and coffee. Decaf Yorkshire tea (a popular one in the UK - are you UK or US?). It was okay, and now my hubby has one of a night because I told him caffeine can stop sleep. If he likes it then it must be okay 'cos he is a firm - buy it in a box and heat it in the microwave type. Why do I get migraines and not him - it's so unfair! The coffee just tasted like it was missing the kick. Decaf also gets the caffeine removed by processed methods so who needs to take the chance, especially when all it took was time to like the camomile stuff - and it did take time. When I'm out I always feel so hippy!

    The 123 diet book - all over Amazon - Heal Your Headache, The 123 Program. No 1 is to stop all migraine and non needed meds (who knows what nasties are added to the med capsules, gelatine for one). But you need to keep this up for 3 months I think. I now don't take any. I hear you gulp. Just think of your worst and decide if you can live with it for the greater good. If all fails you can wean yourself of the heavy stuff by taking 800g Ibrufen - but then you have to wean off these too. Then try his elimination diet, ie, step 2. If this fails or isn't as good as you hoped, try step 3, ie, preventative meds, eg. beta blockers. I've been stuck in step 2 for a few months. It's not easy, as my set of triggers can differ from that of others. I started too harshly, eg, gluten free porridge and water for 3 days. I have now started to just omit the triggers he suggests. Things are easier. The other day I used frozen Atlantic, non-farmed, Salmon. Hubby had some a few days earlier and advised it was fine. Mine tasted far, far too fishy, which confused the hell out of him! Why did I keep on eating it. I only had it with brown rice, which is fine for me. But as the 123 book states, who knows how long it was sitting around before it was frozen, as tyramine builds up over time in dead animals. I suffered the next day, but nothing that I didn't wish I could take Ibrufen for, but I just lived with the dull ache for the day. Also, canned fish even in water, can sit for too long before canning, so the tyramine builds up. I found an excellent study on this by accident.

    Cutting a long story short, I visited a private ENT consultant in Spires, because at the start of my migraines I couldn't work out if my sinuses or my migraines were the worst, but went to private ENT cos lack of sleep made my migraines worse - a big circle. He was useless. But sent me for private MRI scan, saying that if he only wanted to check my sinuses he would have opted for a CT scan, cos MRI scans show up the vessels as you state. He found nothing. But I doubt if he checked it good enough. My most recent NHS neuro consultant, advised the CT scan would show up my vessels better than the MRI - I give up. If he spoke understandable English I could have asked him. NHS may still be free, but if you can't understand them, then what is the point. NB, eventually got to see ENT consulate on the NHS, he told me that when I lie down my soft palate falls to the back therefore blocking my nasal passage. The private Spires consultant just told me that my nose blocking on lying down was 'just one of those things' - ******* useless etc! Still don't have a nose cure though, but it's better than it was, no doubt due to the 123 diet. I don't trust any consultant. NB, the 123 doctor advises against scans if the symptoms are definitely migraine, and I think he has a point. Phew! Hope you read this with a cup of 'tea'. Also, 123 book advises against all nuts.

    Also, this 123 plan is so different from one main other book on Amazon, namely, the ancestral approach by a Doctor Tulketh (spelling?). I have the book somewhere but do not follow it. He advises against wheat, barley, rye and is not keen on dairy. But the first half of the book goes on about the aforementioned, but then he provides recipes that contain lots of things he advised against. Too confusing. Take your pick I suppose.

  • Hi again,

    haha, I've got a variety of tea flavours so grabbed one and read your reply (I'm in the UK, Birmingham, and you?)

    I used to have camomile originally for my depression and other mental health problems but found it tasted and smelt like hay! I've started drinking raspberry and peach recently but do love my coffee!! i know i need to cut this out but i'm too much of a caffeine junky! If you go to lidl/aldi their prices are quite good and the quantity/taste is also good.

    Ah i see, i will download an ebook about the 123 diet but actually seem to have done step 1 already- i have been on every type of meds (high dosage) and decided i needed to go cold turkey to see if the heavy use for so long was affecting me too. This was so painful and i literally felt i was on deaths' door- i started this maybe a year ago and i still don't think my body is fully recovered. I constantly feel numb and that i can't think well. Motivation is also lacking, but i hope in time i'll get better. I will research into the diet and see what I can do to follow it, thank you :) I hope you are feeling better after the salmon incident.

    Do you definitely know the issue is migraine? I understand if it is definitively migraine then tests/scans are not worth it, but if you could be referred to another neurologist or register at another GP and get referred this way as they need to make sure nothing untoward is happening.

    It does seem very confusing and any steps performed to eradicate migraines seem like a long process and sometimes not worthwhile. I hope you will find a means to an end with this diet and i suppose anything natural without chemicals is better in all aspects of being healthy.

    Keep at it, and good luck!

  • That was quick. I'm in Liverpool. Oh you naughty girl! Caffeine in coffee. I'd buy more Ibrufen if I were you. And raspberries - another no-no. You live dangerously. I did mean to say at the end of my essay that I hoped I was not teaching my granny how to suck eggs. I wish the 123 diet could be updated by the doctor. I wonder why not? I did expect there to be more books and more recipes online, and they all seem be American, and I don't understand their cup measurements. Why can't they speak English! Well I'm now off to my homemade (I hate cooking) soup, leeks and lots of them, scallions, carrots, garlic, home made chicken broth (well get me!), and potatoes, care of a US site. I had to put salt in it though, so I'm a bad girl just like you, but without it it was a tad bland.

  • Oh Liverpool! I visited there for a day trip as I adore The Beatles (doesn't everyone!) but didn't see too much. i'm originally from Plymouth but grew up near Lands End in Cornwall.

    Haha, i use 800mg ibruprofen when needed but find Paramax useful.

    No of course not, i appreciate any advice and if i hadn't heard it before then even better!

    I cannot cook to save my life! I do try but even following recipes i'm terrible. That sounds yummy, and homemade soups are gorgeous; enjoy!

    I need to grab another tea and read through the 123 diet- another hectic lifestyle change ahead then!

    I must admit i'm dreading this lumbar puncture procedure though 😓

  • We love Lands End. We holiday in Porthleven at least every 2-3 years. I had most holidays in St Erth as a kid, but others places also. Got the train to Plymouth from St Erth a few years back for a day out.

    Never heard of Paramax, and don't want to! Have taken Q-10, B2 and Magnesium for a wk or so, maybe that's why I have been feeling better of late. Murder to buy them without the usual suspects of additives, eg, gelatine, in them. Q-10 was cheap at 30 quid! There was a better one but at over 50 quid but I thought I'd chance the other one. All 3 as per NICE guidelines.

    Soup got a bit monotonous towards the end; and I still have 3 days left in the bowl. But better than porridge.

    They seem to be looking after you well. Doesn't sound like the Liverpool version of the NHS. Maybe we should both live in Cornwall; very spiritual and all that. May be good for migraines. I keep meaning to ask a question in the letters page of our national newspaper, ie, do Yoga teachers ever get migraines? I'd really like to know.

  • Being honest, the health service for migraines and my mental health was not good in cornwall or plymouth, but seem to be receiving better help in birmingham currently, fingers crossed it continues!

    What is Q-10? sorry I don't know much about this sort of thing. I heard magnesium can be good, feverfew and b vitamins but i never knew the right amount to take or dosage so gave up in the end. £30?? that's a lot! is it recommended in the 123 diet?

    It would be an interesting case study, i think also if a national survey on how much of the population in the u.k. get migraines and what they do to cope with it- would be a good read and help people to know other ways that they can cope.

  • I have no idea what Q10 is! But, women in work have taken it for losing their hair during menopause. Just Google NICE guidelines for migraine, which advises that it is good (although they put it differently) for migraine prophylactically, including B2 (riboflavin) and magnesium. But NICE does not give the doses, don't know why. There is quite a bit on the net regarding all 3 for migraines including doses that were tested/researched. But, taking all net advice with a pinch of salt, I am always mindful of dodgy advice, and advice that is just copied from other sites. But as I work for the NHS I never trust them 100% either. I don't recall the 123 diet advising for or against them, but I'll have to look it up, but, as I never trust anyone 100%, as long as the advice is from a good source, I'll think about going with it. But if the NICE/NHS advises for them, then who am I to not trust such esteemed sources? The NHS would not even mention them if they came from dodgy research. And, the NHS/NICE is not known for even mentioning, never mind advising for, alternative-type meds. Also, bear in mind that the 123 book is about 16 years old, and even older considering that it was probably finished a year or two earlier, and then it would take time to print. Magnesium will be excreted in urine if not needed; don't know about the others; but look them up on the NHS website as if I recall correctly, either one or both of the other 2 are harmless if too much is taken.

    I am totally disappointed with the UK info on the web regarding migraine. It mostly seems to be US based, including recipes which are all in cups. I even think that there are not enough up to date books on migraine, and most seem to be US based anyway. Half an isle in my Tesco is devoted to gluten free. More people get migraines than there are people with gluten intolerance. Gluten is big business due to the press and celeb coverage. Its most annoying. Whilst triggers vary, so many packets, tins and cartons include the usual triggers. If I see lemon juice or flavouring/spices, ie, MSG, I'll throw a wobbler in the isle! I can't even find up to date research - I wonder if any is being done?

    I asked my GP for amytriptaline today. I wonder if I'll take it tonight? I haven't even got rid of the nightmares that I experienced during taking my SSRI's; I took the last 4 1/2 wks ago. Migraines have certainly got better in terms of intensity and frequency, but when I suspect I'm home and dry, I'm not.

    God I miss salt! I stupidly only took sea then rock salt for a few wks, only to then realise that the Reduced Salt, being 50% less salt than these and table salt, is just that, 50% less and therefore, no doubt better. I should have kept with it; I'll resume this first. I also have rosacea, very mild and now controlled, but my nose will flare up like Rudolph if I take too much salt, and as both conditions are related to vasodilation, you'd smell a rat. So if my nose flares, then I know I should keep away from that trigger. It's like an early warning system! I accidentally took celery salt for celery seeds the other day; and I could have lit the whole of Merseyside with my nose. The greatest ingredient in it was salt. I don't know even if there is a difference. TTFN

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