Hi all, I've just been diagnosed with endometriosis. Its taken a very long time to get here, because of my very vague symptoms. Which turn out to be migraines. This may sound silly, but I'm not sure how long I've been suffering with migraines for, because I only very recently realised that it was a migraine.
My symptoms are:
-Seeing outlines (halos) of all people and objects, these then stay in my view but shift was my eyes move.
-Small blue pin pricks of flashing lights
-Yellow light circles forming in the side of my vision
-Large zig-zags of light flashes
-Colored blocks & shapes of floating light
-Large (almost imprints) of light, from lightbulbs and screens etc
-Floaters in my vision
I also experience:
-Numbness in hands and up my left leg
-Slur my words (feels like my tongue is thick)
-Confusion, forgetfulness, saying words wrong, saying a random wrong word, or in wrong order
-Dizziness
-Spinning sensation
-Hallucination (thinking I've seen a cat jump out at me, or someone about to bump into me, making me jump and feel unsteady and very confused and disorientated)
-A drunk feeling
-Light-headedness
-Weakness all over (especially in hands, can't even hold a pen or write)
-Smelling something like a chemical
-Pain in a very specific part of my head
-Neck stiffness
-Ringing ears
I don't always get a headache, which is why I didn't think it was a migraine! These things don't always happen at the same time (although they have done) but I get the weakness, dizziness and confusion paired with the lights frequently, once a day or every two days. I get just the lights every single day.
I'm so confused about all of this! They started very badly about 7 months ago, I need to stay on the birth control pill for my endo, but my GP has said I am a stroke risk, because of these migraines. He's keeping me on it for 3 months until I have surgery for my endo.
Should I be worried about stroke? Are these a type of seizure? I am very confused! I've been put on Pizotifen by a very confused and largely uninterested GP, who only agreed these were migraines after I said I thought they were...Pizotifen isn't helping yet, but I've just been on it a week.
Does anyone else suffer from these and have any knowledge or advice? I am an English Lit student, and getting so behind on work because of this.
Thank you so much!
K x
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kittyIM
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Hi is is possible to have migraines for a variety of diseases, also to have more than one autoimmune disease. Just to rule it out, get your GP to test you for Hughes Syndrome, due to some of your symptoms, I have this, and run a forum which supports it, many of our members are also on this one. hughes-syndrome.org/ List of symptoms, is on the front page, it is important to rule it out, however should you feel you may have this or test positive, it is easily treated.
Please also be aware patients with Hughes Syndrome often have a Thyroid problem also and the birth control pill is a no no. Here are the blood tests, get tested sooner rather than later: hughes-syndrome.org/about-h...
Your various health professionals if they have heard of the disease may also know it as APS, Antiphopholipid Syndrome or Sticky Blood MaryF
It is vital they refer you to somebody off that list... but as mentioned above the blood tests are simple to do, but some of us with the condition do have sero negativity, if they won't refer you, you can self refer privately to London Bridge, also make sure they do a blood test for your Vitamin B, iron and also D, vital with all autimmune diseases. If you need more help please ask. I run the patient forum on this platform for Hughes Syndrome, however also do stay on this one for all the great migraine advice, lots of our members are on both, plus others. MaryF
I'd recommend asking your doctor to test your B12 levels and post your answers on the PAS forum even if your doctor tells you they are 'normal' as your list of symptoms reads like a list of symptoms of B12 deficiency
Unfortunately many GP think B12 deficiency means anaemia (because it was first identified as a condition named 'pernicious anaemia' and you can't have B12D unless you have abnormal blood cells but it most definitely isn't the case.
Unfortunately there isn't a good simple test for B12 deficiency - the ones used - both Serum B12 and active B12 are known to be inaccurate. The normal range used in UK, US and many other countries includes a huge grey range where people where there are significant numbers of known document cases of clinical deficiency (ie on symptoms). Recommendation by NICE in the UK is to treat on the basis of symptoms.
Tests for MMA (preferably in Urine as this tends to be more accurate) and homocysteine levels - a couple of nasties that build up if the body doesn't have enough B12 (or enough B9 (folate) can be better indicators that the actual B12 tests. So, go to your doctor - ask for B12, B9. MMA and homocysteine to be checked.
Like Hughes syndrome it's often associated with thyroid problems ... and other autoimmune problems.
Left untreated B12 deficiency can result in irreversible damage and complete system failure. Treated early enough and aggressively enough people make remarkable recoveries.
My person symptoms have included - migraines, depression, anxiety, thinning hair, carpel tunnel, numbness in feet, loss of balance, confusion and loss of memory, struggling with names and nouns, sudden needs to go to the loo, breathlessness, strange smells, loss of sense of smell, shooting pains in legs, tinnitus, complete lack of energy, disassociation (things not feeling real - bordering on psychosis) ... could go on but it gets a bit boring. If I keep my B12 levels up then nearly all of them go away.
So, please go back to your doctor and make sure that they are looking for an underlying cause and not just treating the symptoms.
B12 is found only in animal products - so vegans and vegetarians who don't eat much dairy/fish are at high risk.
However, the general cause of B12 deficiency is something going wrong with what is a very delicate absorption processes - people can start producing anti-bodies that attack vital parts of the process, there can be drug interactions (acid reflux is a common symptom of B12 and frequently treated with anti-acids that actually make the absorption problem worse) or just the fact that as you get older acid levels in the stomach decrease.
B12 is stored in large quantities in the liver so an absorption problem can take years and even decades to develop into a deficiency.
some passive absorption of B12 - not through specialised cells in the ileum - does occur and some people can get enough by this method - you need to be taking 100-1000 time RDA at least for that to happen - so not really something you can correct by diet.
Whilst you can overdose on some vitamins - eg B6 - you can't overdose on B12 - body just excretes it in the urine.
Endometriosis and fertility problems are listed amongst the symptoms of B12 deficiency.
Hi Gambit, thanks very much for this. I had a simple blood test to check my B12 levels, it came back fine. But I now realised this may not be the best way to test? I am seeing a Rheumatologist and will follow this up, thank you! x
Hi am sorry to hear you are not feeling good. What sort of diet have you got? Alot can be attributed to diet and inflammation including endo. If you havent already cut out caffeine, cheese, booze, fermented food, chocolate, citrus and anything with msg in it. There are other things you could do but these are the absolute basics if you have migraine.
Thank you for this info, I eat a healthy & varied diet, but I haven't looked into trigger foods. My diet hasn't changed since my migraine aura began happening daily 7 months ago. Could it just start from nowhere?
Yes it can start out of nowhere but there are usually clues if you look back. Some theories of migraine work on thresholds and once the threshold is reached migraines kick in. Another theory points to inflammation. Some foods cause inflammation and excitation so reducing them could help with migraine. A neurologist called David Permutter (sp) has written a book called Grain Brain about affects of gluten on the brain. Theres another really good book called Heal Your Headache by another neurologist. I have had migraines for 10 years and they are linked to hormones. I have adapted my diet with a certain amount of success. I am very sensitive to meds so have stayed off them.
The other thing is to try a bit of meditation. Mindfulness is good and I can recommend Headstart.
It is your choice whether you go down the medical route or nonmedical (I dislike the word natural). I advise you pursue them both but don't be bullied into taking meds if you feel worse on them. GPs usually start with beta blockers. Request a neurology appointment. One last thing Nick Silver of the Walton Centre in Liverpool has a good factsheet on chronic migraine if you google it.
Yes! I'm pretty much the same. Turned out I have hemiplegic migraines caused by my menstrual cycle, which they only found out after I'd been on Prostap for endometriosis and ended up on a stroke ward when I came off it again!
You certainly need to see a migraine specialist who can give you a proper diagnosis and treatment plan to help you manage these symptoms when they occur but more importantly to reduce the chances of attacks in the first place. And sooner rather than later if it affecting your education! As MaryF said it is important to rule out other conditions, Hughes being one of them with many of the symptoms you mention. What contraceptive are you taking? If you suffer from migraine with aura you should not take the combined oral contraceptive Pill as it is associated with an increased risk of ischaemic stroke.
As for the preventative you've been put on by your GP, you need to give it around 3 months to see if it really works for you, but if you felt that your doctor lacked expertise in headache, please come to see one of doctors. See our website to request an appointment online migraineclinic.org.uk/ or call for more info about booking on 0207 251 3322. We have factsheets on our website too which might help you.
You poor thing, sorry I can't be of much help but I wish you all the best with this. See a specialist - & change GPs! A dietitian helped me by the way. Rebecca.
Have you asked for the Depo injections? You have them every 3 months and they have been a life-saver for me. I also have endometriosis and have these injections to help. I could absolutely not cope without it. It worked very quickly after your first injection. I did come off it for a while, but couldn't cope so I had to go back on it. Would recommend highly.
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