Ivabradine - advice on starting low and going slow. Anyone else managed to build up from miniscule dose?

[Kes]

Just wondering how you guys who are incredibly sensitive approach this. This drug is supposed to be taken twice per day. I couldn't handle 2.5mg dose so doctor has recommended trying me on tiny granule. I was thinking of taking this for 3 days and then if tolerated adding in a second granule later in the day for 3 days then moving to 2 granules in the morning and 1 in the late afternoon for 3 days and so on. Does 3 days sound like a sensible amount of time to increase dose at this very low dose?

Also how do you manage to regulate the dose when dealing with such tiny amounts? Do you use v small scales to weigh the tablet or just go by eye or take photo of what you're taking

 

[Celandine]

My daughter is on Ivabradine. Just wondering what happens to you when you take it. What do you mean by not being able to handle it?

 

[Kes]

Within a few hours of taking it I became incredibly fatigued and groggy and couldn"t stay awake and also my mood which was fine beforehand sunk considerably and this took another day to wear off...

 

[Celandine]

Hmm, just wondering because my daughter got worse when she started taking Ivabradine. I thought what might be happening was that it was lowering her HR but with no extra vasoconstriction going on gravity was pooling her blood in her lower extremities even more than before. Did some research and added a times release horse chestnut supplement for vasoconstriction and within a day she started to feel better. I'm assuming you're taking it for POTS.

 

[Celandine]

*timed* release

 

[Kes]

Thanks @Celandine that's interesting. Good to know. Do you remember what brand and dose the Horse chestnut timed release supplement she took was please? Does she still take this?

Yes I'm taking it for POTS. Does / Did your daughter wear compression stockings or calf compression sleeves or anything like that? I'm finding I need to wear them pretty much all the time I'm up as otherwise I crash very easily and get bad inflammation type feeling in my head which I think is caused by brain perfusion. Sometimes I've felt awful for weeks. It depends how much I've overdone it but the compressions seem to protect me presumably by stopping the blood pooling in the legs. I understand some people wear abdominal belts too. I tried it but it made me feel worse afterwards...

 

[Kes]

PS I imagine though with the Ivabradine and timed release Horse Chestnut supplement working for her she doesn't need to wear compression stockings etc..

 

[Celandine]

Hi @Kes

She has prescription compression tights (the thigh high stockings aren't as good) and she wears them in the winter. Not sure how much difference they make. Weirdly, she has always liked wearing tight things. Even as a very young child.

The specific horse chestnut supplement is this one from Swanson. She's run out before and even using another version by Swanson did not give the same benefit. Have found this on more than one occasion so I am now convinced that, for her at least, getting this particular product is important. Luckily it isn't particularly expensive--

https://www.healthmonthly.co.uk/swanson_sup_herb_horse_chestnut

I'm in the UK but have actually ordered from Swanson's own site in the US sometimes because they have super sales on sometimes. Amazon probably also carry it. Daughter takes it twice a day, with her Ivabradine. She is now on the max dose Ivabradine--7.5mg twice a day.

I have to warn you that if you have high blood pressure you shouldn't use vasoconstrictors!

Here's another thread where I posted more comprehensively about this stuff:
https://www.healthmonthly.co.uk/swanson_sup_herb_horse_chestnut

Also, if you haven't checked out pots.org yet, probably a good stop. Also some good stuff on Dysautonomia International's site and forum.

My daughter is 18 now and went from being almost totally bed bound for 2 years with ME and POTS to now being back in school full-time, having a p/t job, social life and looking at universities for next year. You can see what stuff she's taking in the above link. My fingers are very crossed that she doesn't relapse.

 

[Celandine]

Oh, also, to this day when she stops any of the herbals and prescription things she takes (sometimes it seems like a good idea to see if she could) things go downhill. We seem to have found the ideal combination of stuff for her and I am so pleased that so far she hasn't become tolerant to any of it.. I keep hoping the POTS will just go away, but it hasn't. It does feel like just POTS now, though. The ME symptoms seem to have died right down. I attribute that to lots of rest early on and Perrin technique osteopathy and maybe the liquorice, though I feel like that may have mainly improved her POTS. Such a complex illness.

 

[Celandine]

If you have to compress all the time, then a pharmaceutical or herbal vasoconstrictor might be able to give you the same results but be much less of an inconvenience. You should broach this with your doctor. This whole set of illnesses is so strange and individual that what seems to work for one person can be awful for another with similar symptoms.

 

[Celandine]

Sorry! Posted the wrong link to my older post on this subject--
https://forums.phoenixrising.me/threads/morgans-story.80643/page-2#post-2284993

 

[Kes]

Thanks very much @Celandine for sharing your daughter's experience and all the helpful information. Thanks for taking the time to share it all. My brain isn't really functioning now but I'll read through it all again tmrw and yes absolutely re: doctor with vasoconstrictor. I've not got high blood pressure but thanks for the warning and obviously helpful for others who will read this.
Brilliant regarding your daughter doing so well. I really hope she continues to do well