I've posted about my headache issues before. This post is going to be long and I'll try to be concise but I struggle to form a coherent tought these days.
TL;DR - Icepick headaches, migraines, strange symptoms since June with very few pain free days. GP not listening to me. Feeling worse and more bizarre than ever. Right side of head and body only.
Symptoms have changed/progressed. My GP just isn't hearing me. Each time I go back I just get given a new medication to try and that's it. No discussion, no reasoning, I try to describe new symptoms and I just get told it's a migraine, try this medicine, see ya. Indomethacin, amitriptyline, topirimate. They always have side effects that ruin me and do not do anything for the headache or the other symptoms. I've had no blood tests, nothing. Doesn't even bother taking my bloody pressure (I'm morbidly obese fwiw), I'm in and out of my appointments in 2 minutes.
I feel like a shell of a person. I am always exhausted, mentally and physically, right to my very bones. In fact my bones just ache most of the time. I used to work a very busy/active job - 45 to 60 hours a week, always on my feet, sometimes a 15 hour day with no break, always switched on and just on it. I'd get tired, absolutely, but nothing compared to this. I could still tidy my house and play with my kids and exercise etc. Just function like a person, basically. When the headaches started I thought I was just burnt out so I quit that job, found something a bit easier going, do only 35 hours a week, so much easier. But I will sleep 18 hours on my days off, I get home and I'm too tired to even shower or cook or do anything. My kids, my house, my partner - everything is neglected.
I had never had a single migraine before this. The occasional headache when I had a cold and I think I had a tension headache a couple of times but that's it.
It started in June. I can't remember the exact date but I remember the exact moment it all kicked off. Icepick headache (according to GP) that blinded me in one eye and almost dropped me to my knees it was that painful. Gone in less than a minute. Freaked me out but google told me they happen and I felt absolutely fine for a couple of days.
Then I had icepick headaches happen 1-10 times a day, had 'auras', stabbing and burning pains in my face and eye, I'd feel drunk - wobbly and unbalanced, tired, slurring my words, purple and blue flashes, dark floaters, vision whiteout, weeping eye, dripping nostril. Intense pressure on the top right of my head 24/7. 99% of the time it only affects the right side of my head/body.
August I had a headache every day except 20th & 21st. But still the pressure on those days.
In September I had 7 days (not in a row) without headaches, just the pressure in the top right of my head. Sometmes I would feel it in the back of my neck and it would get so bad I could barely stand and it I would vomit and sweat and get the stabbing pains in my face. It's also when the tingling started. It's like there is a line running down the centre of me, from the top of my head. The tingling, in fact all of my symptoms, is on the right side of my body 99% of the time. I've occasionally felt the tingling and numbness on the left side but only in the top half of my body and only very lightly.
The tingling is unpleasant. It's not pins and needles, it's more like goosebumps, like all of my hair should be standing on end but it's not. Sometimes it's more of a buzzing. I feel it from my scalp to my toes, arm included. I can be standing or sitting. It's completely random.
In October the muscle weakness started. My right hand would suddenly lose grip and I'd drop whatever I was holding. I had half the strength in my hand and arm. My leg would sometimes just give out. The weakness would just be random, come and go, not all the time. My feet would get burning hot or sometimes feel like they've been dipped in ice water. By this point I was no longer having icepick headaches or headaches every day. I was still feeling awful but for new/different reasons.
November the headaches became even less frequent, or at least mild enough I just ignore them now. However the stabbing headache in the top right of my head was still happening, but not icepick levels of pain. No more weepy eye or auras or blindness. Still the burning stabbing pains on the right of my face though but it also moved to the base of my skull with a deep aching pressure. It makes me want to vomit. Still the tingling, the weakness, the numbness, weird aching feeling in my shin. My lips get this icy but burning hot feeling. If you've ever had a strong mint and than drank ice cold water it's that kind of feeling but in my lips only.
My memory is horrible now. I get my words mixed up and use the wrong one entirely. Sometimes I try to say something and it just comes out like huttrhgjgj. Just a nonsense noise. Or I say 'nice have day!' like my brain and mouth are not syncing. Sometimes I get this deja vu feeling but it's intense and I feel sick and scared. Sometimes it's not deja vu but more like a vision of the future? I don't think I'm psychic! But that's what it feels like, as if it's a memory that hasn;t happened yet. It's a very bizarre feeling. When this happens I sometimes feel fuzzy perhaps? Like someone is hugging me too hard but I don't actually feel like I'm being hugged, just that too tight blood rush feeling.
The strangest feeling is that I can feel the shape of the pain in head. I don't think I can sound any crazier after that last paragraph but when I cough or bend down or laugh or get the stabbing headache I can now feel the specific spot in my head. It's mushroom shaped, in the top of my head. Before, the pain was just in that general area, top right of my head, but now it's like I can pinpoint the origin of the pain.
What is wrong with me? 30+ years with only a handful of headaches and never had a migraine before. Now I am broken and exhausted with a constant barrage of head pain.
I tried seeing 2 other GPs but they just tell me I need to go back to the one that doesn't listen to me because he's the migraine expert and they can't help me.
If anyone manages to read even a little bit of this post - Thank you. If anyone has felt like these and had a doctor that has heard them and fixed them please share your experience with me.
I feel lost and alone.