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A shift in symptoms

Nackapan profile image
13 Replies

I'm on B12 injections 2 weekly. I'm on no other medication apart from over the counter pain killers if needed at present. The shift on the positive side are:

Fewer migrains that used to last for days.

Chronic tension headaches do continue but less often.

On the down side:

Dibilitating fatigue

Am also shaking more especially after trying to cook. ?changes of direction with head or standing.

the feeling of legs going to give way (old symptom back today.

Glasses clamped and painful continuing. They are not tight.

I used to try and walk around the block most days. These are getting fewer.

Tried a weekly injection. Headache. One day okayish. I'm trying to believe a shift is good but miserable Im stuck on the bed again with a hissing head .

I was convinced taking more vitamin d has helped the headaches.

Taking less supplements, keeping up vit D and spartone and solgar so not overloaded Having bloods done 1/8 to see if ferritin levels up and on track with folate Magnesium.

Has anyone had theses symptoms when headaches have reduced? I'm hoping new phase to better things?

I do remember months back that I was able to walk on a straighter line with a headache??

Am trying to stay positive .

If any of this familiar to anyone please post. I'm eating so well. I feel I'm doing all I can? So worrying when you feel like you are unable to get uo the stairs or may give into a dizzy state. The only way at present it seems to reduce symptoms is sit still . So frustrating.mind is bright ,body so unwilling.

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Nackapan profile image
Nackapan
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13 Replies
buster_uk profile image
buster_uk

Sorry your having a hard time Nackapan. I'm on the bed today too. The shakey legs I have too as well as the over whelming fatigue.

I was told it could be due to lack of potassium but I am not sure about taking a suppliments. I had the glasses clamped to the head the other week but that's gone. (for now). I take liver pills to aid my ferritin. Just got them from amazon.

Two pills are equil to 3oz of liver it says. (probably bull poo) but as you say you will try anything.

Nackapan profile image
Nackapan in reply tobuster_uk

I tried coconut water fot pottassium that someone suggested on here as a rich source. I really didn't like ithe. You might. Also fibird mentioned Low sodium salt .

The clamped glasses feel has not left me . It is daily

Lurcher-lady profile image
Lurcher-lady in reply toNackapan

I love anything coconut, but the water was awful :( Bananas are good though, so I have one of those every other day for potassium.

Nackapan profile image
Nackapan in reply toLurcher-lady

Yes I eat bananna also baked potato with telephone skin on. I wish I did like coconut water as a rich source.

Thsnks

noszbe profile image
noszbe

How's your blood pressure, from sitting to standing, it should rise. if it falls, then have you looked into adrenal issues like low cortisol or low aldosterone, e.g. does salt help any symptoms? Another possibility is low catecholamines, b12 could aggravate this, tyrosine or phenylalanine would help if this was happening. Headaches and fatigue could also be from amine issues, like histamine or tyramine foods.

Nackapan profile image
Nackapan in reply tonoszbe

Sorry I did write a reply but obviously didn't send it!!

Thank you.

My bp is fine on standing so don't have pots . I di have an over senative autonomic response to flight or fight which makes my heart beat fast aye time and makes me very noise sensitive making me jumpy.

I will certainly discuss with doctor what you have raised .

Hadn't thought of that.

Thanks again

noszbe profile image
noszbe in reply toNackapan

Have you investigated dysautonomia as a possible cause of the headaches? A quick google suggests that it's possible. Some people find that high doses of thiamine helps with dysautonomia or tachycardia. (see amazon or iherb reviews for thiamine in 500mg sized doses) I've never been diagnosed with dysautonomia or heart issues but thiamine helps my racing heart.

Nackapan profile image
Nackapan in reply tonoszbe

I'm glad thar helps you.

I will investigate. I think my probkrms are vestibular disturbance. Also nerve damage in my head. The messages from eyes to brain a strain. Lights set my head sizzling at the back. All horrid and weird. Even though having less severe headaches /migrsins. I have constant head pain in my scalp. When I eat pain runder uo the back of my head. If bad I eat soft food or soup. Why i can't watch TV or read A4 I really do not know. It physically hurts my head. Last try in February gave me a migrain for days. Also tried an audio book. Did the same. Alsi can't use the landline. I've had no explanation.

Take care

esteloca profile image
esteloca

So sorry you're going through that. It's all very familiar to me. I'm afraid I can't help because my own situation is so bad I barely get up off the couch. It's exactly as you say, the only way to reduce symptoms is to sit still or lay down. I lay straight down even after eating!

I used to have frequent migraines that lasted 3-4 days at a time and still have them occasionally but they're not near as bad.

I get so shaky especially after a shower. You can hear it in my voice sometimes. I also have balance probs, dizziness, weakness, debilitating fatigue, memory problems, confusion ... Doctors are little to no help and contribute to my exhaustion. I have tachycardia and cardiologist told me to increase salt intake and avoid hot showers.

Last week gp referred me to vestibular therapy 45mins away for dizziness even though she sd herself it probably won't do any good. I haven't even answered the phone when they call to set up an appointment because I don't have the energy for any more stabs in the dark. I'm exhausted even on good days. I haven't worked since I was 31 & I'll be 38 nxt. month.

Hope my experience doesn't upset you. My situation is different. I have other conditions that contribute as well. I can definitely relate. Just wish I could help.

Take care and try to stay on top of everything. 💖

Hope you feel better soon.

Nackapan profile image
Nackapan in reply toesteloca

The vestibular pysio did and does help me if I'm off balance. I do it at home.

I'm sorry you are akso so restricted in what you can do. I was hoping this shift with less debilitating headaches was a way forward.

I hope you get some respite soon

I wish I could at least watch the TV or read. So frustrating.

Thsnks for reply

Salt will help tachycardia. It will increase your blood volume if you have POTS. Also heavy duty compression tights. I would sit for a shower . Less dangerous. Are you not on medication to reduce bp? Autonomic disfunction is awful. Try eating little and often and drink loads of water. T C

esteloca profile image
esteloca in reply toNackapan

Thank you so much for your kind reply. I'm glad to hear vestibular therapy helps you - so I'll give it a go along with your other advice as well.

Nackapan profile image
Nackapan in reply toesteloca

Midodrine works and could really help you.

esteloca profile image
esteloca in reply toNackapan

Cardio recently prescribed Midodrine 3x's a day but I haven't started taking it yet.

Hope it does help and hope we both feel better soon. Thank you.

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