I joined this forum to ask few questions really I will give little background .
I am 30 I have been unwell abt 8 years on Thursday my daughter 8th bday it is scary in both she will be 8 and I will have been unwell for 8 years no magic cure or relief in sight so far casseran delivery awake I still think was nerve related but no proof ... So I was diagnosed with pot hyper kind we think only end of last year but had pot symptom for years was diagnosed with pots 2014 i have trialled alot meds had lot reactions so far I am on clonidine 25mg that meant be upped soon seen it doing nothing at all though does seem be making me moody . High heart rate197s highest ever had.most days high 160s high BPeveryday I see 200s more but if am sitting it goes to low!!! sweating blood pooling dizzy fainting if u no mast cell u moost likely no pots .if not there is good site called pots.uk if sounds like u .anyways I had on of reactions to all sorts for the last 8years insomnia and hives all ussal mast cell fun as if day is not bad enough the nights are torture all over bone pain horrid jumpy legs feeling of being wired yet so so tired. Shaky temp up and down sore throat swelling of mouth hives at same time every nite 6 30pm 930pm 1100pm 130 am .so strange allways same time try taking to many antihistamines doesn't help paracetamol doesn't touch side of bone pain but all I can take ketotifen doesn't seem help as much I want it to I take 5PM by 5 30 I got rash of it .I just bought a weighted blanket coming this week if anyone want update on if helps I will post one and new bed see if can help me sleep bed lovely hadn't helped spos it looks pretty tho...I feel like I doing all on my own gp lovely but no not much or how to help I seem be constant pain tears hives tantrums at moment.i feel very alone in all this no relief in sight covid stopped appointment till march with specialist to. I guess just wondering if anyone else has such horrid time of it at night time. Stay safe k
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Merkat90
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Hi Merkat, and welcome! I'm so sorry to hear about your difficult nights! It can feel really isolating to be having symptoms at night when there are fewer people to connect with. Have you and your GP talked about whether some of the medications that are typically used as first line in MCAS would help? H1 antihistamines and H2 blockers are often the place people start, and Ketotifen is a particular H1 blocker that also may have some mast cell stabilising effects. Some also benefit from the medication Nalcrom, which can be particularly helpful with intestinal symptoms if that's an issue, though some find wider benefit. Something to discuss with your lovely GP.
I'll be curious about your weighted blanket, as I do like heavier covers, but not an increase in heat at night!
Hi jess thank you for your reply I am on ketotifen and antihistamines took 600mg from morning till 1 40 next day and ketotifen other day no help for bone pain .it so hard when go doctor dont understand no end in sight. I have tried sodium cromglate that made me more I'll dont no what else dr could offer what ussally is next line of meds would offer? Ketofin helps but it no miracle. I will let u ni how it goes if ever turns up the weighted blanket was only £22.99 ebay new so thought was worth a go .
Some folks find some improvement with the addition of montelukast, which blocks the effects of leukotrienes (another chemical released by mast cells). Sounds like you do have a good GP if you've got the ketotifen and tried Nalcrom as some won't even try those!
Ooh no dr croom prescribed both them not the gp good heavens as if get out them without letter of specialist. I will ask about that medication thank u would that help bone pain aswell ?k
Ah, didn't know you were seeing her. That's great. Montelukast isn't particularly known to help with bone pain, but in my experience it has helped with fatigue and overall reactiveness. My bone pain is focused in a few specific areas where I know I have extra metabolic activity going one (had a nuclear bone scan ages ago and the those bits lit up) and if I keep on top of taking my calcium and Vitamin D mine generally is ok.
Yerh seen her 2 ...3 times now cant rember .yerh she prescribed the ketofin right bfre lock down it has helped the hives but still coming back hourly but less but still real bad of uu get me so can feel improvement but same time still horrid. Yes god those scan with the dye scare me they do . It seem be in my arms legs most hurts allot at first thought pots mabye blood pooling but I wasnt purple so assumed wasnt that form torture it is everynite . I was low in vit d and calcuim both ok now my folic acid is low yet to find a tablet isn't yellow ...I will ask her abt those meds u mentioned thank you .
Hi, I suffered similar bone pain for many years and finally gave in to trying Amitriptyline. I started on 10mg and went up to 50mg about 3 years ago. As long as it doesn't upset your mast cells you may feel a bit groggy and have a dry mouth in the mornings at first but I find it helps so much with pain. Hope you find something that helps, Jane
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