Is this migraine or cluster headaches?

This is my first posting here. I have found this site because I am becoming rather frightened about what is happening to me. I have always been a 'headachy' person, from childhood. In adult life this worsened. I have had a "headache" now for approx. 7wks still on going. My vision is off blurry, sometimes unfocused, black bits sometimes more red bits all over. I lose balance suffer not quite dizzy but whoosy feeling like the floor is shifting under me. Pain does move round my head. I have had mri to look at sinuses as I thought they were the culprit but apparently not. Painkillers no effect. I cannot take stronger prescribed one's as I have IBS and acid reflux and they make me very unwell. I also have fibromyalgia, underactive thyroid and have had operations on both shoulders for frozen shoulder. The pain in my neck is bad as is my shoulders. I am on various medication. Thyroxine, sertraline, propanalol and zopiclone. I have spoken to my gp but he doesn't know why this is happening and I can't face keeping on going to him with this. It eases off if I go walking or exercise. Usually it starts off painful in morning, eases then by evening builds up again. Or days like today when it is at a constant level of bad to the point when it seems to reach a pinnacle when all I can do is lie very still in a dark room. Am I going mad, is it all "no pun intended" in my head. Please any ideas or advice on what is happening to me. I have tried strong stuff, amitriptyline stuff like that. Thank you.

6 Replies

  • Hi in order to rule it out, please consider getting your GP run tests for this treatable disorder, Hughes Syndrome/APS, sufferers often have a Thyroid problem also, it is best to rule it out, if you do get a result from this, then I can direct you to a list of specialists in the UK who understand the condition, at least you will have looked into it.

    Often families have lots of different autoimmune diseases or a history of blood clots or miscarriage, but not always. MaryF

  • Thank you I have been reading the items about these and the gaps symptoms match mine. But I have been tested for anaemia before is it different from the pernicious type. X

  • HI, yes important to check vitamin B12, D and iron levels, but my link was not about that, it was being tested for sticky blood, Hughes Syndrome/APS - Antiphospholipid Syndrome, not PA. APS. MaryF

  • Pernicious Anaemia is actually a misnomer in as much as the anaemia is a symptom of the underlying problem not the problem itself.

    Pernicious anaemia is an autoimmune condition in which the body produces anti-bodies that attack one of other of the mechanisms involved in the rather complex process for absorbing B12 in the ileum. B12 is used by the body for a wide range of things - from cell reproduction, to maintenance of healthy nerve cells, to recycling some of the waste products used caused by dealing with things like fat. As a result its symptoms are far ranging and include anaemia (generally deformed red blood cells but can affect other blood cells), neurological problems like tinnitus, headaches, numbness in hands and feet, shooting pains and neuro-psychiatric problems like anxiety, depression and psychosis and cardio vascular problems like stroke and heart attacks. It is frequently misdiagnosed as ME, MS, anxiety, depression and even dementia.

    B12 deficiency can also result from lack of B12 in the diet (eg if you don't eat any animal products), gastric surgery affecting the ileum, drug interactions (eg omeprazole, NSAIDs, Metformin) and reducing levels of acidity in the gut as you get older (which is why it gets more prevalent as you get older ... but it is by no means confined to old people). It can also occur during pregnancy because B12 is being passed on to the foetus as it grows.

    B12 needs B9 (folate) to be absorbed and the two are used together for many key processes.

    Unfortunately there isn't a good test for B12 deficiency and there is a significant grey range in which people present with clear clinical indications (symptoms) but labs will label the results as being in the normal range. It also isn't well understood by most medical practitioners who often associate it with anaemia though anaemia may be one of the later symptoms to occur. The NICE guidance in the UK doesn't really help with this but never mind.

    Because it tends to be caused by absorption problems standard tablets aren't something that are going to work in treating it.

  • Hi, there could be many causes of your symptoms (many of which I have or have had) and they are the kind of symptoms for which it can be difficult to get a diagnosis, and treatment that works, as you have found. Very good advice about testing for other conditions above in the previous comments from people much more knowledgeable than me.

    I think you should go back to your GP (although I understand your feelings about doing so) as you do need to rule things out and perhaps ask for a medication review, and referral to a specialist if appropriate.

    It is good that you have a diagnosis of under active thyroid (although not good that you have it, obviously) and I have read that fibromyalgia, frozen shoulder, headache and many other symptoms can all result from this. Perhaps you need more help from a specialist in this area, perhaps an endocrinologist.

    It sounds as if you have had migraine from childhood. I was told by a GP who suffered from it herself and whose children also suffered from it, that it is a genetic disorder, and she recommended a preventive and painkiller, which you already take. She also told me that migraine does not stay the same and can change throughout your life so she was not concerned about the new symptoms and level of pain and frequency I was experiencing, and also suggested that hormonal fluctuations could be a trigger. I do not know if this is true or not, I was not completely convinced, but as she was a sufferer herself she had obviously looked at it in some depth. If you have stomach problems you could ask your GP about different applications of pain killers such as nasal sprays, injections or patches. You could also ask for a referral to a neurologist specialising in headache. In my experience, oral painkillers do tend to cause or increase stomach issues (and can cause other symptoms - I had fainting, dizziness, acute stomach pain and nose bleeds caused by aspirin) which can make you much more ill in general, and also prevent the proper absorption of nutrients you need from your diet.

    If you can work out any triggers which make you worse, or precipitate a bad attack by keeping a log of activities and diet, you may be able to gain a little control (eg cutting out gluten from my diet helped me to an extent) but I appreciate how difficult that is when you are in continual pain. Sleep issues and low blood sugar (missing meals), certain lighting, computer screens, strong scent, and so on, can all be triggers.

    Anyhow, you are not going mad, and it is not 'in your head' or a psychological problem. And you do need more help from your doctor.

    Hope this helps a little - these are just my thoughts and experiences, in no way intended as medical advice.

  • Thank you all for taking the time to respond to me. I know that I will have to see the gp yet again as my life is being so badly affected by the pain I'm in and I'm afraid of what might be happening to me. I don't know how to stop the pain at this time as painkillers aren't touching it. I have used cold compress and eyemask, and migraine patches

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