Not sure what to do, help please

[cmoc]

Hello,

I took Evenity for 11 months, stopped at that point through side effects, then tried to hold on to gains with a very low dose of Actonel (instant flashing light migraine), then Al Acid (very low dose) migraine again so tried Evista (migraine). I DO get a lot of migraines but these were unbearable, so 4 months after the Evenity I took the last 12th injection to try and hold on to the gains while I waited for something else (Zolendronic Acid infusion at low dose), but, after the 12th shot, it was like my body couldnt take any more and 2 months after it, I have terrible migraine, vertigo every week and feeling sick.

I was due to go and have the zolendranic acid infusion but the migraine, severe vertigo and nausea stopped me. I just feel my body cant take any more.

I dont want to lose all the Evenity gains (it was a struggle) but I dont want to be reduced to no quality of life either. Not sure what to do.

I know there are several people on here who have done the natural route with hormones, strontium, etc. can you give me some advice. My bone density was -4.5 (with 5 spinal fractures) and I raised it to -3.6 with the Evenity, but its probably dropped a bit again (wouldnt know).

My GP has given me HRT (I am 71 and extremely med sensitive). I am most worried about migraines (which are daily right now).

I can also reschedule the zolendranic acid infusion but I really dont feel like it right now. Any advice appreciated.

[HampshireELM]

Hi. Whilst I'm afraid I don't have any answer to your dilemma, I just wanted to say I completely sympathise with your situation as I am also extremely medication sensitive. I find the medical profession seem to find this difficult to understand. I'm currently having to try & have a sensible conversation with them about which medication I take for osteoporosis. I'm trying to do what I can to build my bones myself, such as a lot of walking, going to the gym to do muscle strengthening to help my bones. I also do qigong which is supposed to be one of the best forms of exercise to reduce falls.

I just wanted to say you're not alone. I will watch this post with interest...

[cmoc in reply to HampshireELM]

Hi, yes, its a nightmare. I was diagnosed in 2016 after 2 x lumbar fractures. I then, put off medication for 5 years. The first year I did the diet, supplements etc. and managed to stay the same at -3.6. So kept the same for the next 3 years to find that I had dropped to -4.5 and had 3 more fractures, so I did the Evenity (really struggled through but managed), but, have been worse since finished it trying all the other drugs. I am coming to the conclusion I would rather have some quality of life for a while that put up with these daily migraines and vertigo to have stronger bones as I can function anyway.

[Teriparatide2024]

poor you!!! I’m coming up behind you, but not there yet. I stopped all the orals because they ruined my insides. Then, a few years later, I had Teriparatide. Had to stop that after 7 weeks because of side effects. 10 days ago I had my first injection of Denodumab (Prolia). For 8 days I had unbearable side effects, then I contacted a Homeopath. Yesterday I started 2 remedies.: one for detox, and one specifically for side effects of Denosumab. Almost instantly I felt much much better. Slept better, and, we’ll see today…… Have you tried a Homeopath?

[cmoc in reply to Teriparatide2024]

Hi, I did the Teriparitide for 6 months (every second day) and managed that OK, I had to stop as they diagnosed MGUS and were worried about bone cancer. The Homeopath sounds like someone that might help. Thanks, I may try that.

[MayGodBlessYou]

very sorry to hear it all, the low dose zoledronic acid sounds worth a go... your specialist sounds interesting, as customising doses is a rare thing ?

a specialist told me that prolia follows evenity.

if the prolia didn't agree with you, the specialist might should offer the z.a again.

a friend of mine used to have migraines. she said when she gave up obligations, the migraines stopped.

i mean no offence saying such a thing, i just know she used to have migraines and that's what she told me. gave up social and work obligations. she was a very dedicated high school teacher. i didn't know she was prone to being obligated.

[cmoc in reply to MayGodBlessYou]

Thankyou, I do know what you mean by obligations, I have that nature too, it doesnt do us much good healthwise. I am glad your friend found relief.

[Lottyplum]

Hi. So sorry to hear of yr awful migraines. Our daughter suffered daily +had to take meds daily, start work early just in case a migraine kicked off! We then found out about Dr Sarah Myhill who was a Godsend! Our daughter's migraines were good related+ for her it was dairy! Stopped the dairy+the migraines stopped. She has very occasional ones due to bright office lights but the difference has been life changing. No more meds either. Have you looked at food triggers? I trust you get an answer soon as migraines are horrendous. My migraines (with aura)were hormone triggered during menopause. I do think hormones play a big part. Do take care+be v kind to yourself!

[cmoc in reply to Lottyplum]

Thankyou. Yes I did the elimination test years ago, I have kept diaries for years and sorted out loads of food triggers, I gave up dairy too for years which I now wish I hadnt have done due to not getting enough calcium for my bones. But there were other triggers like onions and maltodextrin that I had never thought of. I also used to get a migraines connected to my monthly periods (when I used to get them). I am too old for those now.

[Lottyplum in reply to cmoc]

For my bones (osteopenia) I take BoneBalance and trusting it prevents any further loss. Trust you get answers to your migraines and get relief sooner rather than later.

[cmoc in reply to Lottyplum]

Thankyou