merkat30 Posted January 6, 2021 Report Share Posted January 6, 2021 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 . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 6, 2021 Report Share Posted January 6, 2021 This have been happening to me all week. I go to bed reading on my phone (calm) and then my heart has been pounding, also blood pressure going up. I've had some scary episodes this week. Im come to the realisation the toothpaste is causing it. I'm brushing my teeth, then instantly they start tingling, about 45 mins after heart starts pounding, body heats up, feeling sick and feels like a seizure is coming. The next day I'm just good for nothing. I wake up in the middle making these weird breathing sounds and my heart just pounding. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 6, 2021 Author Report Share Posted January 6, 2021 Really does sound like u have some sort of mast cell activation issues like me nin sorry to hear you have had horrid week to with seizures and stupid toothpaste deffo can cause reactions . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 6, 2021 Report Share Posted January 6, 2021 Yeah hoping to see Dr croom in next few months as I need this checked. Only problem here now we're in lockdown so probably can't get anything done anyway. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted January 7, 2021 Report Share Posted January 7, 2021 I have to take a small dose of Bystolic at night. It keeps my heart rate down. It's a beta blocker. I'm sorry it's that high, that's crazy. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted January 7, 2021 Report Share Posted January 7, 2021 4 hours ago, Nin said: This have been happening to me all week. I go to bed reading on my phone (calm) and then my heart has been pounding, also blood pressure going up. I've had some scary episodes this week. Im come to the realisation the toothpaste is causing it. I'm brushing my teeth, then instantly they start tingling, about 45 mins after heart starts pounding, body heats up, feeling sick and feels like a seizure is coming. The next day I'm just good for nothing. I wake up in the middle making these weird breathing sounds and my heart just pounding. I have terrible bladder problems and I get a lot of UTI's and the dang thing wakes me up throughout the night. It's terrible. I'm sorry. I get it. Quote Link to comment Share on other sites More sharing options...
Nin Posted January 7, 2021 Report Share Posted January 7, 2021 11 hours ago, CallieAndToby22 said: I have terrible bladder problems and I get a lot of UTI's and the dang thing wakes me up throughout the night. It's terrible. I'm sorry. I get it. When I got really bad last year the one thing I got was bladder problems. I have to say it was one of the worst out of everything! I could hardly walk as it felt like bone was rubbing on bone (it was really weird) i had 2 lots of antibiotics and it just got better. So yeah I really feel for you. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 7, 2021 Author Report Share Posted January 7, 2021 5 hours ago, Nin said: When I got really bad last year the one thing I got was bladder problems. I have to say it was one of the worst out of everything! I could hardly walk as it felt like bone was rubbing on bone (it was really weird) i had 2 lots of antibiotics and it just got better. So yeah I really feel for you. Bone bit sooo me it horridous isnt it . Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 7, 2021 Author Report Share Posted January 7, 2021 My pots doctor rang has told me there is nothing else they can offer me for my hyper pots we tried it all medication wise .So just emotional support all can give now she said. Feeling very crap about it and as am sure all u felt very alone . Hoping dr croom can help in april . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 7, 2021 Report Share Posted January 7, 2021 4 hours ago, merkat30 said: My pots doctor rang has told me there is nothing else they can offer me for my hyper pots we tried it all medication wise .So just emotional support all can give now she said. Feeling very crap about it and as am sure all u felt very alone . Hoping dr croom can help in april . Problem here is we haven't got what america offers! What have you tried so far? Well my pots doctor keeps telling me to take sodium tablets as he's reluctant to try fludrocortisone! They don't seem to be working. When the pots nurse phoned and I said these salt tablets aren't working, she said awww don't say that. Not being funny but those alone don't work for most. She made me feel like they should work. The only thing that seems to keep me on my feet are these horrible compression stockings. I can't keep wearing these especially in the summer, so I need another solution Dr Croom probably has a lot of knowledge about pots also and maybe could suggest something Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 8, 2021 Author Report Share Posted January 8, 2021 midodrine fludrocortisone pyridostigmine clonidine ivabradine beta blockers x3 cant rember names sodium cromglate these just ones I can rember diorlyte daily electrolyte daily compression socks exercise pacing saline at hostpital for emergencys all these made me end up hostpital just torture feeling of hope then have such horrid reactions am still trying to get over clonidine. Salt tablets made me nauseated and stuck in bathroom they horrible hurt lining of my stomach. Compression seem set my heartrate up more .I know feeling as if u let doctor down it your fault it not worked same with family we can only try being gunnie pig sucks . Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 8, 2021 Author Report Share Posted January 8, 2021 Rang up see could get my dr croom appointment sooner they put it from march to april now to june 😪😪was only appointment gna help . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 8, 2021 Report Share Posted January 8, 2021 On 12/30/2020 at 12:38 AM, Pistol said: @Nin 5 hours ago, merkat30 said: Rang up see could get my dr croom appointment sooner they put it from march to april now to june 😪😪was only appointment gna help . Oh no thats a long wait! How long do you reckon I'll wait to get an appointment with her if I made one now? Is it because of the lockdown? You have tried everything....so disheartening 😔 Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 9, 2021 Author Report Share Posted January 9, 2021 At first the secretary said was no appointments then I said I was follow up I had appointment allready she looked was moved without telling me .it so long to wait even before the covid . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 9, 2021 Report Share Posted January 9, 2021 6 hours ago, merkat30 said: At first the secretary said was no appointments then I said I was follow up I had appointment allready she looked was moved without telling me .it so long to wait even before the covid . I wouldn't had thought she was that busy! I know their is a guy in London Dr clive Grattan but don't know if he's as good. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 10, 2021 Author Report Share Posted January 10, 2021 Think she see loads ppl with allergy that to probably or she did say was going help bk in hstpl last march with covid mabye she did get called in the end . Quote Link to comment Share on other sites More sharing options...
Nin Posted January 10, 2021 Report Share Posted January 10, 2021 Yeah they said she's not taking on any new patients so can't even book an appointment now. They said they'll put me on the waiting list. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 14, 2021 Author Report Share Posted January 14, 2021 Well that something I guess Quote Link to comment Share on other sites More sharing options...
Healthixir Posted January 14, 2021 Report Share Posted January 14, 2021 It's really hard to book an appointment now that there's COVID. I wonder how long this will keep on going. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 14, 2021 Author Report Share Posted January 14, 2021 I know it was before but now it so difficult. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 17, 2021 Report Share Posted January 17, 2021 I used to have night attacks every single night they were awful and debilitating. After I started clonazepam along with propanol I have not had a night attack since! Truly saved me. Quote Link to comment Share on other sites More sharing options...
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