I thought I was very very slowly improving. Last 2 days managed a short walk. 5 minutes. More steady walking although weak. Nasty scary neurological symptoms subsiding or gone. Still waiting for better vision and to tolerate artificial lighting.
Then today headaches returned. Also number head with content swooshing or low key buzzing. Different and new that came with nausea! !
With that explanation had anyone had similar? Very disconcerting as trying to build your body strength after so much time bed or housebound. I feEl I've gone forward 3 steps and back 2!! Fed up-- so slow. Can't remember what my normal is. Injection due Monday and bloods. Folate B12 (doctor ordered ) anything else should I ask for?
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Nackapan
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I have had very bad headaches as well. I have done 6 weeks of every other day injections and have seen significant improvement and even complete healing of some of my symptoms but my headaches are still lingering. They are by far way better and less frequent than they used to be. They used to be all day every day and very bad. The headaches are just taking the longest to heal for me.
Yes money are less frequent as at one stage worried about how many pain killers I was taking. Just so bored of bring in my room. 16/24hrs yesterday. This had improved greatly. Want to gey out even drive . More patience! !! 3 Months in
As others have previously advised, I would make the most of being at the surgery for your injection to put your case for more frequent injections, or at least another two weeks of loading doses. Print info from the pinned posts on this site to show/leave with them to support your case. If you get no joy with more injections from the surgery, you’d be advised to purchase the necessary supplies to self-inject.
I went through similar 3/4 years ago although I did not get the bad headaches I did get this horrible feeling of pressure in my head, the nausea has only eased since eating Polish . pickled veg and pickles and the minor headaches eased by eating more leafy greens.I still get swooshing and noises in my head that I put down to tinnitus as it gets worse in places where there is a lot going on like noise in shopping centers or music on radio or tv. I spent at least 18 months or so getting worse before I started to improve slightly but do tell you GP everything that is going on and you may be lucky and get more help. Also do you keep a symptom diary , if you list your symptoms on a day to day basis it will show your GP whats going on and you will be able to see if anything in your diet is of help. Sorry you are still feeling so rough
Thank you. I'm seeing the nurse tomorrow. Last time I saw the gp I handed him a list of all symptoms. The neurologist did write to gp and said to follow bnf guidelines as I was copied in. That should help. I will see what this injection does and record everything. Good wishes to you
I would not allow them to re test your b12 level as you have been taking sublingual spray , b12 tablets also loading dose , therefore although your level may be high in your blood it won’t have reached cell level so the guidelines say do not re test once receiving b12 injections. You can refuse testing . All the best and hope you feel better soon. I hope other members can explain better than me why re testing is not necessary .
Okay thanks. I hope the injection does something. It should top me up. I will ask to start every other day though . Yes I don't think the B12 necessary but will get folate full blood count ferritin vit D done on blood test
Thanks. I've just read to get Mma tested on bloods as if not high cellular leveks of b13 okay. So thanks for that I will make sure it goes on blood form. Yes the important Healthier New Year! !👍as well as happy!😊
When you are trying to repair damage from being deficient, the more you physically do the more b12 you are “using up”. I learned that the hard way when last winter I decided to shovel the snow since I felt “great” after only 4 injections in one week. BIG mistake!
Maybe someone else can explain that. I have been having 3 injection every week for a year and continue to do so as anything less has me feeling like I’m regressing after a couple of weeks. Even if I drop it down to 2. My level is sitting at 900, which to me sounds like it should be more considering the frequency I receive them doesn’t mean anything. You have to go by how you feel once you start treatment.
I get the swooshing if I do too much and skip an injection.
Yes I have found that if I do anything symptoms come back. I'm really not pushing though as the only time I've left the house is in a cab to the doctors. The last 3 days I've walked a few minutes to the post box and back. I need to move around as I'm thin and deconditioned from being ill. The day I cleaned the kitchen I was in bed all day the following day. Very difficult to pace at such a low level of activity. I do get your point though and when able to do more will hold back a little. Thank you. Now I'm back on loading doses every other day I will hope I can improve. The whooshing sound has been a later development for me. At least that doesn't hurt!
That is a low reading when you having such frequent injections perhaps you need another type that will stay in your system a bit longer??
Thank you! I tried methylcobalamin and thought I was going to die. I’m in Canada so I had to find a pharmacy to make it for me and paid a pretty penny. Only to receive one injection and swore I would never touch the stuff again. For some reason I get rid of it quickly so it makes sense that I need it so often I guess. Apparently some people are like that. There must be some process using it up.
I’m glad you are getting more frequent injections! You will notice a difference.
Btw the swooshing I was getting went away after I discovered my ferritin and iron were being “used up” in the early stages. My ferritin was still “ok” but my iron and saturation were low.
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