merkat30

So if you read any of rest my post you no the night time are pure torture for me . Last nite about 11ish I had heartrate of 160 bpm managed to charm it down well it charmed itself full on shakes after horrible ussal got back into bed I been to toilet ended up stuck we all been there am sure. Couldnt sleep but heartrate had went down to low 62s like rollercoaster so tiering . So it got to 4 55 think was it shot back up to 166bpm .all my lymph gland up I feel horridous today I would gone to hostpital but very wary of what they could actually offer plus here in uk we are on lockdown cases are very high and scary with the covid .my cardiologist pot nurse ringing tomorrow so new if made till then hopfully they help somehow .. I just come of clonidine over Christmas so wondering if it of that making me flare more .guess I just needed vent write it down . Generally feeling awful .

Thanks pistol it quiet scary isnt it . Figures crossed he just been careless with the leftover food .

SO GLAD U WERE NEGATIVE FEWWW!! .My husband has temp now !! But I think mabye could be food poisoning he ate left overs u see he had shivers been cold with the temp to he been stuck in bathroom I have sent of for a test for him to come in the post just to be sure though cant take no chances. He can taste he got no cough...quietly worrying now two children in the house and me having hyper pots mast cells seizures my BP been really high so my heartrate today even more .I darnt let my my mum come in incase luckly my son 14 so he very helpful (santa may of bought him xbox ) so he happy to help .I just got out of mast cell reaction so it all stressful in here today .Nin I can see what u mean u were relived though as least u new it will pass I totally understand that .glad u are ok

Yes I see a dr. Croom at Nottingham hospital she seem nice.hoping she will help .

Glutamate is something else I noticed cause them so now stay away from that.

I have thought it could be related most definitely so has my husband .I also think the very high blood pressure has sumit do with them and my cortisol levels on a night . . Doctors dont seem to though . They been little help I think cause I stay at home instead going into hstpl everytime they dont believe me . Also think they no use so I stay at home only so many times u can go in and get treat horrible even with specialist doctor notes .I am going to ask my mast cell doctor in april if my appointment dont get cancelled that is. ....again. it just terrible I so sorry hear others going though it to .

🥳Arw I wanted to also write this but i didnt no If was appropriate being newish here. I also like to thank u for sharing all your posts it really does help knowing it is not just me hope everyone has healthy new year love from the uk

Also like thank all for writing this post awful other people suffering but it comforting to no am not some freak that just has all these unexplained weird symptoms.

Ooh sorry I did put link but dont think u aloud link product I got a 8lbs one and it does help it not magic but it comforting .yes I get my husband to steam mine to keep it clean hate cant go in wash dryer ha.

This sounds so much like me shakes shivers goosebumps horrible nightly with tachycardia up down BP nausea headache bone pain seizures or aura . I also have a weighted blanket from ebay I will link it . It seem help but does not stop it also sometimes if am agitated it hard get up but would recomend I will go find the link.

I allways get a delayed reaction to everything so frustrating I have mast cell activation syndrome and hyperangrenic pots my doctors call me complex.hope u feel better soon.

That sounds so like me . Yes I had letter of dr g a cardiologist I used see and one Male doctor at ane had me in tears if u really unwell u take the sickness tablet he said me I have mast cell I didnt dare he refused saline was generally horrible had stop husband shouting at him same hostpital was a awful nurse kept coming in turning the saline up which seem to make me very dizzy and nausea headache shakes like shock really if I get the drip fast my husband turn it down she kept coming in squeezing bag cause she wanted me gone . I am very quiet person so I never said anything went home crying feeling worse .. i just feel i dont want go back that hostpital they never belive me even with doctor note and BP machine saying other wise ...no no sorry all the machine in hstpl are broken I forgot

Plus with bp going so high dont no if saline would even help now anyways .

Ooh I no going to those 🏥 is so scary .alot the doctors think the machine is broken 🙄🤥really upset me going though same stuff everytime .I also have awful viens and last person who tryed to take blood got other person in to try she was hitting my hand generally going really rough with me then put canular in wrong was horridous had to then have other person do it ended up saying my husband please take me home I feel even worse now next day full of bruises hand not been same since was over 11 month ago i have been extremely unwell since i just dont want go back .so i am even more not wanting to go anywhere with the virus . So scary being so unwell not feeling safe under care of the medical professionals . 😔😔😔

Yes waiting seem to be horridous on everything . I refuse to go to 🏥because they treat me horrible last time i went come out covered in bruises and they had no idea what i needed wouldn't give me saline and because i refused anti sickness medication because of mast cell activation syndrome they were very rude I couldn't cope with other reaction on top everything else. I tend avoid them .I do worry with my temperature up when I am reacting or having dysautonomia pots flare they keep in thinking it covid now .

I have been having seizures autonomic I am assuming I have been told they is a 3 year waiting list!!! That gp will get advice of them . Feeling very alone allready with the clonidine withdrawal been week from h*** then got told this this morning I am scared am upset generally feeling horridous.

Ooh my that horrid sounds very much like treatment I have had in the UK. Do hope u get decent doctor soon so unfair I also having autonomic seizures and took 2week for doctor even say to there secretary's they get back to me it scary and just not on really .

This is me 😪it has got even worse since I am weaning of clonidine . I am waiting on hopfully a neurologist referral things very slow in uk at moment

It been horrible today I am not on beta blockers as I am allergic to all i try no idea why Joy's of mast cells. Not taking this clonidine today set my heart rate up to 188 bpm and BP was in 217s yesterday luckly doctor stay on phone till went down I did not have to go to hostpital.

Pistol I am going though what u described over last 4 weeks they lied said it settle I have been so irritable and felt like crying all time . I had palptaions nausea shakes shivers worse than all even more high BP today though might have to call ambulance luckly it settle my cheast is sore .it also make me sleepy but I cant sleep !! It has brought on my seizures I not had one since I was 11 years old I am now 30 Worse headache I ever had I have suffered migraines since small child it felt like my head was going to explode I really wish I gone with my gut not upped dose like they told me to .i feel it has made me more poorly 🤧

Sorry this just show up . Thank I for reading my post . I have what think hyper pots mast cell activation syndrome I also have seizures mainly on night time . Only spinal op I had was awake caseran in 2012 all my probloms started after that just seem be getting worse. We started clonidine to help honestly wish I had time machine never took it i am now trying to stop it as made me alot more unwell but u cant just stop it I found out so have to stop by half tablet three time day then slowly wean it out horrible .

Anyone had to stop clonidine tablet. It has made me very much more unwell I now trying to wean it as of two days ago I have chop in half take half three time day doctor said for 3 weeks I have been having horrible side effects .

I get this all time esp when just woke up horrid.

😍wow!!that sounds amazing so jealous

I have this it just horrid I have hyper pots mcas I also have leg arm uncontrollable movements eye go funny pin like pain in legs rush of adrenaline I no to well agitated feeling come out no were everynite it horrible .hot sweats nausea feeling