I am suffering with hay fever, although I know antihistamines are a trigger, hay fever is so bad I had to try it BIG MISTAKE 😪 my nose is so itchy, even when the sneezing and watery itchy eyes ease a little, any ideas would be really appreciated
Thanks guys
Hi Doreen,
Oh no! I bet your legs are going crazy. According to Dr Buchfuhrer, these antihistamines might be a safe alternative.
Safe alternatives: Claritin, Alavert, Clarinex, Allegra, Zyrtec (usually)
This is on his medical alert card rlshelp.org/
I hope one of those works for you.
Hi, you could try Quercetin (if you don't want to risk more antihistamines), which is a mast cell stabiliser. Best avoid it if you have issues with legumes or lectins though. Best wishes
Have you had any success with that Bookish? I bought a vegan one but I was too worried it would make my RLS worse so I didn't take it.
My RLS (if that is what I had - never diagnosed - lots in the family, and all the usual symptoms) has gone, with diet and lifestyle changes and multiple supplements as now have several autoimmune conditions, Fibro, Small Fibre Neuropathy (Folate and B12 issues) etc, so I don't want to imply that I am dealing with the same as you, because I'm not - we are all different and as I am hypersensitive to medication I understand your reluctance. I use the Quercetin (Lambert's, as it is very clean, grain free) for histamine and mast cell dysfunction, but yes, it works well for me. Sorry if that isn't very helpful! I guess try it at a low dose if not contraindicated. Maybe someone else on here has some views/experience. Best of luck.
That's really interesting. I was asked to try antihistamines to see if I had mast cell dysfunction but of course, I couldn't with RLS. I'm going to look into the Quercetin some more - thanks for that. It's so great you've found a regime that works for you.
Bookish
just dipping in to ask did your GP diognose SFN and was it her/him that suggested it? Just asking because I gave been dgnsd with Fibro but have researched and it could be anything. Feel I'm being fobbed off. SFN is perhaps treatable and Fibro not particularly?
I dont know .....
Sorry Doreenw for this brief hijack!
😉
Hi. I asked GP for referral to (3rd!) Rheum who was supposed to be an Antiphospholipid Antibody Syndrome expert, as I had some signs but not enough. Rheum, although good, hasn't been helpful (yet) other than referring me to a very good Neuro because I was getting numbness in increasing and odd places. He sent me for large and small fibre tests including thermal threshold which is what has indicated SFN. Not on any treatment, partly as only diagnosed at start of Covid so no more appointments, and partly as I can't tolerate anything much anyway. SFN, as far as I can tell, can be caused/contributed to by most of the usual neuropathy causes - low B12, low folate, low or high B6, copper deficiency, diabetes (and more importantly blood sugar imbalances that are borderline so less likely to be diagnosed), chemo, also AIs like Sjogren's, heavy metal/toxin issues etc. I may have (neuro) Sjogren's, have genetic weaknesses causing actual issues with B12 and folate and also likely metals/toxins (same genetics) and blood sugar. So I've been working on those! Methylfolate in small amounts has reversed some of the numbness for me.
Some say that Fibro is actually SFN in 50% (you've probably already seen Dr Anne Louise Oaklander), others disagree. I don't know, but do have both diagnoses. Fibro has also been linked to COMT genetic SNP (which I have) and raised inflammatory cytokines (and I have a genetic predisposition for that too). Working on improving general overall health seems to be helping me, so far, but a long way to go.
Best wishes to you.
Bookish
Thank you for all of that information. OMG if we are not in charge of our own health we could carry on bumping through life with just the nearest available label thrust upon us. It us hard though isnt it? such an effort when you least have the strength
🤔
I know what you mean. We get to that tipping point where we realise that however good our doctors are at many things, they don't have the time and don't know us, so becoming our own best advocate, learning as much as we can and making it a partnership if possible, seems like the only way to go. I got worse for a lot of years before I got to that dawning realisation that I had to do something - and I'm sure I've made lots of mistakes - I wish I'd known more sooner, but it is never too late to make some improvements. One small step at a time, and breathe!! x
Ha! yes. So true.
I feel for those folk that cannot be their own advocate though. We are the lucky ones.
Like you say GPs only have a few mins with us and dont know us.
Thank goodness for the help, advice , support and information I've received from this site.
I'm breathing!
😉
Absolutely, we are the lucky ones. I have learned so much from the kind people on here and other forums - pointers to people maybe to read and things to ponder on - as well as huge amounts of support just knowing other people are out there trying to get sorted and help each other. It cheers me up when things are harder.
And that made me smile, thank you !
I used to get very bad hay-fever. I would stop my car while I sneezed 50 times with almost no interruption between sneezes. I saw a specialist and she used a scratch test to determine what specific seeds and pollen I was allergic to. They then gave me desensitizing treatment with very small doses increasing until I could tolerate the usual spring and summer load without fuss. That has worked for 40 years so I thoroughly recommended it.
I agree with that. I got desensitized about 20 years ago. I still have to take one Zyrtec over the hay fever season (no impact on RLS for me), but the hay fever is totally manageable now.
I’ve made the same mistake in the past: Ugh! However, I have no problem with Claritin and Non Drowsy Sudafed. Feel better!
I use AllerClear which is generic Alavert
Loratadine is a non-sedating antihistamine and is the active ingredient in Alavert.
Thanks guys, really appreciate your input.
I used a saline nose spray, and nervously took a Zyrtec.
Happy to report, did not trigger my RLS
Stay Safe
Kind Regards Doreen
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