merkat30

Currently getting over horrible night of ridiculous bp up and down I also get seizure with pots it just horrible 

On 9/14/2021 at 11:38 PM, Bergbrow said:

I get that teeth-chattering to-the-bone freezing episodes also. It’s more frequent and worse when my other symptoms are also present. It happens all seasons of the year. Anytime I leave the house I have to bring sweatshirt, socks, ski hat and blanket. I’ve had episodes outdoors during 90 degree weather (i’m the crazy one wearing the sweatshirt shivering if you’ve seen me). I feel like the docs are throwing guesses at me for why it keeps happening.  Then my body seems to overcompensate for the chills and finally heats up then I’m blazing (without the excess clothing).  Just absolutely awful.  I’ve upped my water/salt to be sure i’m not dehydrated. In addition, I take an Allegra daily which seems to work for reducing the range of my freezing/hot but only if my other symptoms are not raging.  During these flares my heart rate is definitely also not behaving properly. 

This soooo me it horrible I really feel stupid in woolly jumper everyone else is in shorts!! 

Teeth clattering after my wisdom tooth out 3 weeks ago hasn't been fun 

On 9/15/2021 at 9:38 AM, Pistol said:

@Bergbrow - I have HPOTS and get these tremor/chills attacks when my adrenaline goes up. I will be shaking uncontrollably, yawning excessiveley ( an attempt by the ANS to provide more o2 to the brain ), hands and feet and lips blue. If I dont lie down I go down, and even take seizures from absent brain circulation. The one thing that has stopped these for the most part are calcium channel blocker ( to provide adequate vasodilation ), avoiding triggers and IV fluids. I get them 3 times a week vie port at home and have not had too many episodes since. Actually NO seizures or syncope this year!

That amazing pistol !!! So glad u feel lil better 💖unfortunately calcium channel blockers made me more poorly .

It just horrible what even weirder I posted this in june I just come in as having this right now nothing helping at all .

I have this so far nothing has helped . Made worse yes clonidine was evil I am still not recovered from that horrible drug .

This 

14 hours ago, POTSie78 said:

h @POTSie78 glad i am not alone. bp swings are a concern. I have had the stroke bp pressures 225/105 then dropped to 108/80 go figure. This is me it horrible 

⁷

Today has been horrible.  

I had what I call a flare hyperanadrinic shakes so bad my teeth clattered cold hands feet for ages high blood pressure high heartrate . So cold ice cold dressing gown jumper heated blanket weighted blanket and other still so cold .Then when finally ended hours later go to burning feet face yet still cold with extreme weakness thinking adreline of upping mmy ketotifen for my mast cells was horridous .

Sorry for later reply been very unwell anyways thank you so much all your comments so true everything I read  .I really dont no where I  be without this  site . I have put complaint in we will see what happens from there.  The appointment with mast cell doctor was alot more promising she up my meds see if it helps anything.

He was just purely useless nin .he even made my primary gp question me!! Who has seen all evidence of my illness even though I got diagnosis on paper !!! And photograph evidence if am honest feeling very alone and bloody sick doctors saying I have mental problom when I have autoimmune disorders and bloody mast cell activation syndrome !! I also had to answer very strange questions of my gp he was all like do u think u are going to die of pots?!!! I said no but I cant live way I am untreated and same goes my mast cell activation syndrome he said when do u give up tho ... I said when I least have some sort normality like I am spos just give up and live this way --this really upset me . 31 and I am meant just give up on myself pretty much not look for help . He then went on to say I could refer u to medically undiagnosed centure... hello I have diagnosis or did u forget I thought then goes on say to me I talk to you in month    ... makes me so mad . I really am not faking I never do sumit like that if I was how would I make all these symptoms appears... 

On 5/14/2021 at 5:58 PM, MTRJ75 said:

So this is happening again today. I'm not sure what kind of neuropathy this is, but every muscle in my body is cramping and squeezing. I seemed to set it off by walking outside with the dog and standing in 70 degree sunshine for less than five minutes. Since coming in, every muscle in my body (arms, legs, chest, abdomen, neck, even head) has been in indescribable discomfort. Feels like it has something to do with lactic acid, but what is the mechanism here? Burning, nausea, bladder and bowel emptying, blurriness. Everything is going on right now. 

The exertions needed to set me off are becoming less and less too recently. I'm generally fine if I don't move from the couch, but d*** it, is this some kind of neuropathy that's gotten so bad that I can barely stand any stimulation at all now? 

 Sorry u feeling so horridous it scary also when dont no the cause. Do you get rash with weather changes ? Do you have mast cell probloms? This sounds soo much like me it just horrible isn't it hang in there x

On 6/6/2021 at 7:46 PM, KiminOrlando said:

So very sorry. I have been there too. Mast cell Activation Syndrome causes migraines. They are VERY real and VERY bad. They get better with treatment for Mast Cell Activation Syndrome. I had to go to an Allergy and Immunologist to get help because my Neurologist basically said the same thing. He said, "You sound worse on paper than you really are." He didn't think POTS was a big deal or dysautonomia. I'm thinking he is a waste of money and I may be dropping him. You DO need to find a different doctor. Maybe try the Allergy and Immunologist and once you get a diagnosis, then go back and file a complaint? I don't think Neurologists know what mast cell is. 

He assumed was migraine I never mentioned a headache to him at all I no it was a seizure as had as child no feeling afterwards think was cause of excessively high bp but he didnt take well me saying this was all I am the neurologist I no best ovs not !! I have migraines so I no what they feel  like horrible sorry u have deal them to . He said  sounds like u disassociate  now I just read letter which if he classes passing out  as dissociating he very strange doctor!!

On 6/6/2021 at 10:58 PM, Nin said:

I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to!

You have to complain. He needs to understand what he said is so wrong. 

I have got email back with form to print of to complain I have. He was such horrid man . What women wouldnt be sad after a miscarriage u have be inhuman or just numb that why they wrote anxiety. I think he thought I was hypo women no idea what I suffered since 2012 at all . Like u said who use  wheelchair if  didnt need lot easier walk  somewhere than get pushed be a burden. 

14 hours ago, cmep37 said:

Big hugs Merkat - I am so sorry the appointment didn't work out the way you had hoped.

I saw a rheumatologist and he said exactly the same thing to me - must be what they learn at medical school in the UK!  I understand you feel you don't have the energy to complain about the way you were treated (honestly I'd probably feel the same in your shoes) but  in the apst I have forced myself to complain about particularly unpleasant doctors so other people don't have to go through what I did!  Is there anyone else you can see? - I know on the NHS you sometimes don't have a lot of choice.  Could your GP refer you for an MRI?  Could you manage to travel to see the specialists at the Autonomic Unit at University College London - I think your GP can refer you to them and they are supposed to be the leading neurology clinic in the UK - they should at least be prepared to listen to you?! 

I actually got so fed up of being diagnosed with anxiety and stress and depression that I went down the route of going to the mental health people and getting them to assess me.  The clinical psychologist gave me a clean bill of mental health, he said he didn't know what was wrong with me but it wasn't depression or anxiety and he believed it had a physical cause and after that the minute a doctor said it's all in your head I could say no I've been assessed and the mental health specialist says there's nothing wrong with me so think again!

I have been seen also for same reason to prove them wrong . They dont seem to care that they said I was mentally fine strong even the lady said . I hoping he refers me somewhere he is ringing today he will now have copy of that vile doctors letter to read .

22 hours ago, Pistol said:

@merkat30 - I have to use a wheel chair when I am in a flare b/c many times I passed out or had seizures when I have to stand in line, so I use it for stores or Dr offices when needed. One cardiologist - many years ago - told me that the reason I am having problems with my HR and BP is because I think I have to be in a wheel chair. If I just got up and walked around I wouldn't have any problems b/c there is physically nothing wrong with me. When I told him that my doc prescribed the W/C due to me passing out in public places, including his office so often, he replied "This is what these docs do that think POTS is real - they create mental cripples". He then went on to say that he knows all about POTS, and that it is a hoax. "Drink water, eat salt and go about your business like anyone else - and for crying out loud stop paying attention to your HR and BP - it goes up and down for everybody!" ---- He dismissed my NCS and POTS diagnosis and my many autonomic seizures as being "hysterical in nature" and finished off by declaring: "You are a victim of misguided specialists with too much time on their hands that want to make a name for themselves by inventing a phantom illness" 

Thank God I have a great PCP that listened to my rant after that visit and simply kept looking for a better doc to refer me to ( which i found ). 

So sorry merkat! I am sharing this experience to let you know that you are not alone, that there are docs like that and that you just need to keep looking for a good one. 

What horrible horrible doctor !!! He ovs never had to live with these illnesses how it ruins people lifes he wants sacking . I have appointment over phone today with my gp they sposbly spos be referring me other neurologist we will see if it happens 

He was so vile so rude plus no help what so ever !! So sorry u had go though that to  . I know why would I want be in wheelchair i miss out on sooo much i do because of this illness .I think he thought i was not all there even before i got to the appointment.  I think personally mentally i deal real well with all this daily torture my family say i am most strongest person mentally they no . I do worry anyone that has mental health issue but also could have cancer or ms or anything g not mental it not diagnosed because he dont help we all no illness domt discriminate doctors do though.

So sorry u hadve had to go though that. Some people are just so rude  they are. Like how or even why did they become doctor if not to help people ? 

I won't I have been fighting for answers for 8 years now I keep going till they help .

Hi everyone so I had appointment I have been counting the days down to see hoping they may help me with a neurologist in a well known hospital here in the uk. I have several illnesses hyper pots mast cell activation syndrome erythromelalgia seizures unknown cause and every vitamin under sun low 

I just gna bullut point all his faults as I may cry again am so mad. 

•I am in a wheelchair due to hyper pots weakness high heartrate blood pressure up down  he goes to me "why u in that thing" this I think is really not a appropriate way to ask yes?

•I have been having seizures adrenaline up and downs  tremors generally bloody scary night time very unwell as I have wrote about in few posts this was the reason for my appointment "I said all this in detail .. he goes to me I qoute "ooh it a migrane " now i have had migraines as i am sure lot u have they are horridous!! But those symptoms were not of migrane i said this politely to him and health care nurse present.  He was all i am the neurologist i no better dam right refused me a mri because i had one in 2016 his words i never asked for a mri or anything I may  add only mri i have had since i was child i may add i am 31 years old women with 2 children I am no wimp i suffer daily with up down of bp and extremely  volatile heartrate mast cell problems i never bug the doctors i am no hypcondriic which what he made me feel 8 years not lot help I thought this was gna bbe the help I needed to not be housebound able to live my life I ovs thought wrong 

○ he then went on to say I need coping strategies for these imaginary..."migraines" !! How a seizure is migrane is beyond me... And wrote in the letter to doctors I need to be on mental health medicine and all in my head my husband who seen all this and was at appointment agree with me that this was very poor care . I feel let down dam upset I been treat this way I do . 😭I also really feel anyone that see him and has word anxiety on file (I miscarried 3 times from 2010 I was grieving this had been holded against me ever since )  I now have asked to be seen by different doctor got no reply do I put a complaint in is there even a point will get me anywhere or just use up precious energy ...

Sorry just seen do hope today was better day for you 

I understand sorry u have go though this I deal with this daily up and downs of my bp and heartrate like rollacoaster it scary nothing has  helped so far tho this doesn't not in no way mean nothing will help u .I hope u feeling lil better mentally at least . U are strong u will get though this !! 💗 keep drinking plenty fluids and eating what u can rest pick good Netflix to watch and when u can walk around room holding walls for support to keep your legs going diconditioned. 

I have  alot tests over years it coming  up to 9 years of this this Oct just after birth my daughter 😪😪😪lots drug trials to nothing helped so far been to lot different specialists all try hard but seems I have to live with way it is at moment till can find sumit to help .

4 hours ago, Pistol said:

@merkat30 - I have this happen to me, My HR will speed up and then plummet and I pass out. In my first TTT this happened and I was diagnosed with NCS ( neuro-cardiogenic syncope, also called vasovagal syncope, a type of dysautonomia ). When I am in a flare ( probably caused by the virus in you ) I faint more often, so the NCS gets worse. Other times the HPOTS worsens and I have problems with seizures and high BP. 

Everytime I post u seem the same our illness seem be so alike pistol I talk to gp (uk) and he may told me of for standing he said next time happens don't stand up . He going try mme on amoxciln for what thinks is sinis infection I not try these sinse I was 13 am now 31 nearly so am very nervous about it due mast cell problems. I finally got in with neurologist in may for seizures .

2 hours ago, Jyoti said:

@merkat30--this is familiar for me too.  A couple of weeks ago, post Pfizer jab #1, I went into a terrible flare where my heart rate resting and in bed was in the upper 40s and when I got up to go to the bathroom or get some water, it rocketed up to 150 in half a minute or so.  I am feeling much better now, and my heart rate fluctuations, while still pathological, are not insane. Yours are so dramatic.  Were the fluctuations orhtostatically correlated?  Or did your heart rate zoom up while you were sitting or lying down?

Jyoti. I was stood when it went to 173 then drop to 159 after while went 56 then hour so later felt even more funny so took it was 41 so I try stand which I no I should not of my instincts was pots mk go higher stand ..  silly me ... I can go up down like yo yo same my blood pressure always worse when unwell tho .go u being brave getting covid jab !! Sorry made you feel horrible .I hope have mine when doc let me due mast cell they being bit cautious ... 

Hi knellie yes I do think sounds like could be maybe try book a appointment with a imuoligist they will do any relevant tests see if can help u hope u get some relief if u need help in uk msg me I have number to a private doctor who deals with mast cell activation syndrome 

so am currently suffering with some sort virus I tested for covid 2 times clear  .I had horrible day yesterday on the morning my heart went 173 bpm and then half hour later dropped to low 50s bpm then on afternoon dropped to 41 bpm I fainted luckly my mother and son caught me . Anyone else experience low heart rate to I had those kind flares few times I just assumed cause my blood pressure so up and down my heart rate be same currently inbetween doctors so only seeing general practitioner for my pots who doesn't understand hyper pots which alot doctor I seen seem think is my problem . I also have mcas assuming virus making mme more potsie generally feeling horridous. 😢😢

What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .