merkat30

I have this to I have hyper pots and mcas this horrible every nite I struggle sorry hear other ppl have it to do u think it  a symptom of pots ? Or more adrenaline?I had petite Mal seizure as child up age of ten then just stopped some time I think mabye it connected? Either way nite time are horrible I am lot pain right now just sometimes I think why me 🙄🙄

Hi everyone hope you well.

Has anyone been diagnosed with baraflex failure?  https://www.vumc.org/adc/4793

I have this every nite 😭😭😭

So sorry u all suffer the same I use a antihistamines called fexofinine 

I also have high bp or low and high heart rate 

So sorry u in same situation it horrible isn't it I also have insomnia.i have all over aches point want cry but hurt to cry nausea to jumpy legs and arm which I have  no control over night sweats and feeling of being very aditative horrible ussally mast cell reaction on cue every night at 6 30 9 40 140 covered in hives nothing seem help .I have not tryed the  g drug cant spell it but no my uncle who has lot problems heart bk etc is on it he says it help .

Hi pistol thank for replying .My pots clinc is ringing me today I had a 5minute talk yesterday with a Male nurse he saying they probably put the dose up well I feel that be a bit silly with me having real low bp to ... we will see what they say today .feeling horrid as ussal .all appointment over phone in uk due to covid .feeling alone my dr on holiday for 3 weeks now not that she much use like. But was somone talk to .it scary feeling like u have look after yourself .

I for what feel for ever now had horrible night time would say adrenaline surges it every night I honstly thought Clonidine would take away or my mcas new trial drug ketoifen would yet still in alot pain jumpy legs arms unvoltry cheast pain flushing high bp and low tremors high heartrate even laid down sweating it scary nausea to anyone else get this .thank u stay safe

Hello everyone I have been prescribed clonidine 25mg for Hyperadrenergic dysautonomia/pots I been on it  11 days mabye I seeing no improvement I give u little background ...I have low blood pressure and high blood pressure daily it goes from  low 76s to high 190s  I have all the ussal pots symptoms sweating on standing nausea shakes tremors  goosepimples blurred vision i also have horrible adrenaline surges it just horrible leg pain arm pain feeling like somone tugging on my viens stomach problems  also have mcas so medication is a problom I could go on but I haven't the energy . So just wondering anyone else has took cloidine how long if it helped cause it making me feel very unwell at moment🤧🤢😪😴top of got toothache ...

I do it just horrible I really feel for u it just nasty hope u feeling ok today .

Could be mast cell activation syndrome  mabye try see a immunology 

Mine goes real low laying so this doesnt applies to the likes me but  thought was helpful read in general for anyone just something I come across 

Only thing I have found on high bp on standing is this . 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860797/

I thought same I gone though 5 bp machines then when I went into a&e with a attack they keep saying ooh cant be that high with hostpital machine then they go get other machine twice the did it still high !! Then I lay down it goes real low took good two year for hostpital to believe me cause i was sat when bp was taking now they do it after making me walk around the room then I got put in resus bit then went down to low bp then after 3 days I was aloud go home as couldnt fix it said because was going low laying was safe go home. it terrorifing that no one believes even if one small amount time it nock u for rest of day 

Unfortunately it a capsule I am taking so we just trying till 3 weeks see if helps is the plan for now 

My cardiologist is going to try me on Clonidine for my hyper pots but I am worried about taking it with the low blood pressure I have also with mcas to today has been horrid when I  am standing it goes real high my bp but sitting it stays low walking around the house say I wanted to go to the  toilet or make a drink it will go real high so  does my heartrate. I worry because the last blood pressure tablet I tryed ended me up in the hostpital with to lows of bloodpressure.if I am honest I  am scared I allready deal with so much on daily basis my life is very limited I dont leave house unless for hostpital even not that now here in uk my appointment are on phone because of covid ....this trial of ketofin for mast cell i have been on for 12 days definitely made my hyper pots worse I been suffering this for 8 years now .the attached picture is walking to get some water but laying I can have 80/54 in mast cell flare so so difficult to treat .

It so horrible isn't it I feel dirty sweaty soon I get out the shower 🥵😪😪😪

I think this is me at moment is ketoifen like a steroid? Cause my hyper pots ten time worse at moment cause I been on trial of it for my mast cell activationn syndrome. Hope today is better day for u and u hugs from uk💕

I cant stand without flushing I have mast cell activationn syndrome is it of this or Hyperadrenergic dysautonomia?

Anyone else suffer hyper side of pots and also have low blood pressure aswell doctors wanting try high bp tablet but last one ended me up in hospital so worried 

I am also 30 two children this has been horrible I struggle so much but think my children are more caring stronger independent for it in weird way ....yes I have mama guilt daily it horrid they see in pain unwell so much it hard for them and my husband took so much from us but think also given us all stronger bond that a normal...family wouldn't get ..like laughing why mam on floor again and little one only bothered about her jelly cause it normal to them now on treatment wish could help but still tryn to find answers this site is amazing though lot of help 

Thank u for your reply currently  1.55am took the ketoifen capsule 1mg at 5 o clk uk time .now sweating high heartrate dizzy hives assuming it setting my Hyperadrenergic pots of more hope it soon settles how long did u last on it if u dont mind me asking yes it so sedating heavy feeling like cant move horrible 

Hi I currently on nearly second day of 1mg of ketoifen for mast cell activationn syndrome 5pm uk time got take other I feel ran over so much bone pain heavy feeling all over I get sore throat foggy like been on the anesthetic. My untreated dysautonomia playn up hyper pots. Please tell me this gna get better.i dont no wifi can take much more I dont have doctor understands at moment .😴😪😪😪🤢😷🤕one if isn't working at moment due to covid virus here in uk I cant see any of them

I have mast cell activation syndrome I have tried antihistamines I have tried sodium cromoglaite which sent me into currant flare of very high blood pressure on standing high  up 200 sometimes 😱😱high heartrate .then it goes to low blood pressure on sitting laying down  all the usual mast cell stuff lymph gland hurt everywhere my toilet is my new home hives flushing are my new fashion accessories bland boring few food diet 😔😔😔 dont forget the swelling and endless epi pens muscle cramps dizziness migraines i also have a form dysautonomia that they cant pin point but do  have appointment with new doctor in April. I guess what am trying say is I don't no if half this is of mast cell or pots. what medicine do they treat u with ?I still at early treatment but been going on for 7 nearly 8 years now mast cells stopped pot meds working i gradually got worse over years  I actally have a appointment with a dr croom mast cell specialist next week been waiting month getting worse hope today is a  a better day