Hi,
I’m hoping someone may be able to offer some advice.
I’m not sure if it’s the Hydroxocobalamin or PA symptoms but I’ve been SI Hydroxocobalamin EOD for 6 weeks and I’ve noticed that the day of and day after injections I have the worst headache (sinusitis type)....
Does anyone else get this?
I’m m at a loss what to do... should I just ease off the SI or change to cyanocobalamin?
It’s horrible
I’ve not been one to have headaches before and my original symptoms before diagnosis was burning tongue and muscle twitching - I’ve definitely got worse since diagnosis 7 months ago😔
You inject every other day (i.e., every two days). And you have headaches that last two days.
So you have continuous headaches?
Lately, yes.
The headaches seem to be worse after the injection
I had that on every other day b12 injections. A continuous headache if differing degrees. The injection set of loads of symptoms. Too many to list but including tinnitus. It did settle .
I think messages were misfiring all over the place
Thanks Nackapan
Did you notice an improvement once you reduced frequency from EOD?
I’m bracing myself for these side effects each time I have an injection but it’s continuous on EOD as the day you begin to feel better is the day the injection is due again 🤯
I’ve had 15 EOD SI’s now so I think I’m going to really reign it in now because my symptoms improved for a month after the initial 6 loading doses but returned with more symptoms after no injection for a month. Might try fortnightly in first instance
I woukf try s shorter gap say twice a week then weekly .On loading doses. Felt like i was being poisoned but only thing found to treat Thrn was told every 3m. Got to 5 weeks and was back to square one.
After alot of hassle went back on every other day for about 3 m thrn twice a week thrn weekly.
Then 2 weekly fir a year.
Thrn got own supplies abd inject between prescription ones.
In hindsight maybe if I'd stayed on weekly I woukdve progressed better. I don't know.
The headaches a thene all the way through .
Never had a migraine before treatment in my life.
Was starting getting bad tension headaches though which tied in with the menopauseand stress. and dudnt realise signs snd symptoms if b12 deficiency.
First thing found a couple of yesrs before b12 deficiency
Vitamin D. was in my boots 21 range 75 up
Raising vit D certainly reduced severity of headaches
My vision of concern snd I know vision artificial lights text TV landline are triggers feels like I'm under attack. Head sizzles. Stagger walk. Off balance.
So much improved
But a recent visit to another dentist unaware if light sensitivity proved I'm still hiding from it with a reason.
At times I think perhaos I'm avoiding as a habit but no.
I walked into a fully lit room and literally ducked with the head pains before I realised the light was on or what was happening.(that was at homr)
So keep going as long as you can if improvements bring made.
For the last year I've been on weekly.
T C
Omg me too
Same symptoms?
Headaches have not reappeared after injections recently - the neurological symptoms flare up though...
Tongue is fine then tingles like crazy after an injection plus the legs/feet tingling - very random experience after injections
I think this is quite common when b12 is low and injections cause a rapid increase in levels in the blood. I had a hard time tolerating b12 injections after crashing, but I experienced this both with hydroxo and cyano. It only lasted a few weeks. If levels are steady, b12 should not cause headaches. Having said that, I think it’s common for folks with low b12 to have migraines. Migraines were my very first low b12 symptom. I’ve been through lots of treatments and Botox injections work great for me. Perhaps, you are suffering from chronic migraine and the b12 injections have nothing to do with it? Good luck!
Hi, I si cyanocobalamin every four days, the morning and rest of the day after my headache is always a real cracker, always on the right rear of my head. Doesn't matter what time of day I inject or where. Hope you find a difference if you change to cyanocobalamin.
Are you also taking your cofactors. Such as 5mg folate daily, Eating a high potassium diet of 4700 daily to support you. When taking B12 it draws on these to convert the B12 into an active source so you need to be balancing them all. How is your Ferritin (iron) . All play an important part of the healing. I get headaches too but they are better than they were initially. I would continue with your injections. Your symptoms will get worse before improvement. Sounds like you're well on your way. Healing takes time depending how long you've been deficient. Hang on in there.
Such as 5mg folate daily,
Why do you think that 5 milligrams of folate, daily, is necessary?
The highest dose regularly available in the UK, without prescription, is 400 micrograms.
I've read the book . Could it be B12 by Sally Pacholok. She explains the importance of cofactors to help B12. I ordered folate from Amazon no problem
The ability to purchase 5 milligram folate tablets via an internet site says nothing about approved products within the UK.
That quote says that you will likely be prescribed 5 milligrams of folate, not that it is necessary, indefinitely.
Excess folate can cause many issues and needs to be avoided. If 5 milligrams is prescribed, that should be for a short period followed by testing. There are people who cannot tolerate more than about 200 micrograms a day of folate as a supplement on a long-term basis.
Te original poster has already posted they are taking 5 milligrams of folate despite having good folate levels! Which could be a contribution towards not feeling well.
Thanks helvella
I took the advice from my previous post and stopped the 5mg Folic Acid since.
I take a B Complex (incl. 200 Mcg of Folic Acid) but that’s it.
I cannot understand how I’m so much worse since starting treatment 7 months ago as my original symptoms were not really impactful (twitching and burning tongue).
It’s not normal to pump the body with so much stuff all of a sudden so I’m stripping right back BUT there’s no doubt that I experience fatigue and headaches from the Hydroxocobalamin.
Thanks for the advice 👍🏻
Im not an expert. . I'm just learning about deficiency as I go. My initial reply asked if all cofactors have been considered to maximize the B12 injection. The note I posted has clearly stated that folate needs to be checked and what range it should be in to be optimal. It also says its not permanent just 3 months but levels need to be checked by a GP. I only posted as a suggestion to be supportive not as a medical expert.
Mine raised to above range taking 400mcg folic acid so had to cut right back.
sort out sinuses first. ifactivated, blocked can give headaches. if suspect worsening after taking colob.STOP TAKING THAT. As NOT medically trained cannot suggest anymore.One thing I wld comment on SYNUSIS A PART OF LYMPHATIC SYSTEM, one'sappendix, throat tonsils (there are nose ones as well. spleen.TRY TO STIMULATEwith a herbal remedy.monikax
PA is usually caused to thosewho suffer from acid rerflux and I mean a medicated,one pilla day as a maintenance.THE PROB IS malabsorption of ALL VIT Bs.had it NOT PERSONALLY, but at home. Keep an eye on anemia, as can develop into more serious issues, with blood.
Are you on a B complex?
B2 can help with headaches
Magnesium is also important. You can take it topically or start with a small oral dose.
Also need to eat potassium foods e.g. avocado and bacon
Its a good idea to drink mineral water
Would avoid excessive folate if no deficiency.
Thanks Leils.
Yes - on a B Complex and have zinc/magnesium/D3 supplement too.
Will definitely avoid the folic acid and try to ease off the Hydroxocobalamin injections and see how I get on. 👍🏻
A mind boggling condition
Indeed. There is usually more to it as you go down the line...
Have you tried cutting out gluten?
Can be a big trigger for neuro symptoms
Not yet - I will take a look at a workaround the gluten 👍🏻
I know you are relatively sure that the migraines are because of your b12 injections. But just in case I found that my headaches went away with vitamin d supplementation. Have you had that tested?
Guys I had crazy anxiety plus horrific side effects from mythylcobalamin. And a clapping headache after cyanocobalamin. Any suggestions? I really need to take something ... also does vitamin b12 lower any other vitamin in the body ?
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