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Nighttime headaches

Cb1963 profile image
12 Replies

Anyone else with constant migraines? I suffer with B12 deficiency and I'm on a 3 monthly cycle for the injections, I've posted before but was wondering how many fellow sufferers also get headaches or migraines, mine always happen whilst I'm asleep, I've now had a constant lower eyelid flutter and occasionally the right eye has started to do the same, now I'm 100% sure this and the headaches are caused by the B12 symptoms, I honestly feel like I'm banging my head against the wall with the doctors, I have to wait until the end of the month for a blood test to see what my levels are standing at, but in the mean time I've been on propananol and a migraine tablet, I don't think I have high blood pressure (yet) but putting me on another medication and not treating the B12 issues is causing me more untold symptoms, now have constant ringing in my ears and tingling tongue, as well as permanent pins and needles, I'm so hacked off taking another medication when I'm sure that these symptoms are all becoming permanent, why can't doctors listen to what I'm saying, and in the meantime early hour headaches that are brutally painful, anyone else in a similar situation, thanks to you all.

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Cb1963
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12 Replies
Nackapan profile image
Nackapan

Yes I have been

I was also prescribed propranolol but haven't taken it. It dosent sound like it's working for you. I found raising my vitamin d levels helped. I avoid artificial lights which is a problem! But es reduce headaches.

I think you best to review medication. I do less and less to reduce thrm. I can't do much walking as exercise can set them off.

I feel for you as it's miserable . Can you negotiatemail more b12 injections? Say for a trial. You shouldn't have your b12 tested once on injections. I'm on 2 weekly. Bnf guidelines say 2-3 months. Also doctors should go by symptoms . Push for what might help. Hope you get some relief soon.

Cb1963 profile image
Cb1963 in reply toNackapan

It's feeling like a battle of the wills, I'm saying one thing and the doctor is saying something else, I can't understand why I have to take propananol when I'm sure it's a B12 problem, as I'm finding that the propananol is not working and I'm nearly at maximum dose, and to be woke up in the early hours of each morning 3am,or so is having a impact on my thought process, I've had numerous major health problems in the past but this is right at the top of the list for pain, and of course I'm thinking it's something more sinister, just a nightmare, thanks for your reply.

Nackapan profile image
Nackapan in reply toCb1963

Have you had an MRI scan? Or CT. I was told by last neurologist I was having some migrains and mostly chronic ongoing daily headaches now. where the group of muscles from spine to over too of head cramping. The propranolol was prescribed as a second option after amitriptyline to try and prevent headaches. It lowers your bp. The reason I didn't take it was my bp is low and I was/am quite dizzy. Gp also thought best to wait. If your headaches are the same or not less frequent I would have that drug review. I was told trial and error . I've tried 2 drugs now. I also had to stop paracetamol to make sure I wasn't having rebound headaches. If you have it about 15 days in a row it can do this. Same with other over the counter pain killers. Migrain/chronic headaches have been a huge factor in My b12 defiency. I also did not suffer before with migrain or infact very many headaches. There are so many sorts of headache that its hard time finding what will help. Try and keep your b12 up. Get more bloods done. Iron magnesium anything else that could make them worse. If your bp is on the high side propranolol or a similar drug in theory should help. I was also prescribed clonidine another drug that reduces bp and helps with some menopausal symptoms. I tried hrt as am of that age. It didn't help me but gave me more headaches! Some women it helps. I find I avoid things that i know might start one. Very restrictive to what I csn do. The most annoying is not reading. TV and radio. Try a different positions to sleep. When I was getting them in the night i had a routine if sitting uo in the dark first at least an hour with appropriate aromatherapy oils. Sometimes ice on the back of my neck hepled sometimes warmth sometimes nothing! I also paid to see a neurologist with a special interest in headaches. He was reassuring nothing sinister in his view was going on. So dibilitating. I hope you find some sort of respite from them soon.

Gambit62 profile image
Gambit62Administrator

propranalol can help some people with migraines - probably because migraines involve spasms in blood vessels and as a beta-blocker it can help with this.

I was prescribed them at one point for hypertension but found that they helped with migraines at one point in the past - tried them again a number of years letter but they didn't help then. Being woken in the night is very common in migraine sufferers.

Doesn't help with the not treating B12 but propranalol is a valid suggestion in terms of treating migraines.

Cb1963 profile image
Cb1963 in reply toGambit62

Thanks for the reply, and the information, just so frustrating that I never used to get headaches /migraines and getting them whilst asleep is now giving me a different type of headache during the day one of more tiredness, I never thought a headache could cause so much havoc and make me feel so miserable, I appreciate your feedback, thank you.

Nackapan profile image
Nackapan in reply toCb1963

The different sort of headache I called the hangover from the migrain

pvanderaa profile image
pvanderaa

I have had two distinct but separate headache symptoms in the past. One is from the deficiency and includes brain fog and me wanting to isolate myself from crowds. The other is from a side effect of the B12 jabs. It feels more like pressure and anger.

With correct B12 injection frequency and supplements, for 10 years, both are pretty much gone. I’ll still get the second one if B12 gets too low before the injection is due.

For the first one, the headache was also associated with loss of direction when hearing noise or sounds, I couldn’t tell where the sound was coming from. Once I got enough B12, my hearing directionality returned and the headaches diminished along with the brain fog.

I can also get a headache from monosodium glutamate (MSG) also known as “natural flavor” on the ingredients list of foods. I avoid soya for the same reason. This MSG will give me brain fog about 24 hours after I eat it.

Have you looked at dietary issues or tried going gluten and dairy free?

Do you keep a logbook to be able to sort out the symptoms from the cause several hours earlier?

Gunj_redjem profile image
Gunj_redjem in reply topvanderaa

How often do u inject for 10yts?

Gunj_redjem profile image
Gunj_redjem

U don’t u try migraine meds?

helvella profile image
helvella in reply toGunj_redjem

Please follow guideline 31.

31. Do not use 'Text Speak' when posting or replying.

Cb1963 profile image
Cb1963 in reply toGunj_redjem

Yes I'm on naratriptan, but only when a headache comes on, thanks for the reply

Gunj_redjem profile image
Gunj_redjem in reply toCb1963

Wats ur b12 level...ask ur doc for regular flunarizine it’s good

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