Embarrassing Event Triggering Major Relapse And Arrhythmias...

[Canadiangirl73]

I am so utterly embarrassed to discuss this, but I'm hoping some people could shed light as to what happened and offer advice, help and empathy. Maybe some had the same thing happen to them and can relate and make me feel not so isolated and scared. So here it goes: whenever my husband and I try to get intimate I get real sick. This happened a few days ago: I got tremors, chills, nausea, sky high blood pressure that lasted for over 24 hours, low grade fever, and worst of all, severe arrhythmias. I am used to having some arrhythmias, but this was super scary to the point that we thought of calling 911. That same wacky scary heartbeats happened again 12 hours after the "triggering event" and I am now getting copious amounts of PVCs and what feels like runs of SVT.

I had been doing real well for a Potsie and I was a marathon from where I was year before. I could clean, cook, stand in one spot and wash dishes, was sometimes even able to be on my feet for 8 hours at a time, etc. This is discouraging me to say the least. It feels like my body has way too much adrenaline since and can't get rid of it. My resting HR is at least 20 bpm higher since, I have tremors and chills every time after being upright, blood pooling, shortness of breath, chest pains, I urinate constantly (3 times in 40 minutes!!!), all the dysautonomia goodies. I just cannot understand how intimacy triggered such a relapse, especially since it was cut short, because of my irregular beats, hmm, hmm

I guess my questions are: has this ever happened to anybody else? Why can I not get rid of this adrenaline? Why did I get, and still do get, irregular heartbeats? Should I bring this to my physician's attention? Also, I've been mostly bedbound since, which makes me mad considering I was doing so well, so I wonder if you think it's a good idea to push through this so my body doesn't lose what I had gained, if that makes any sense?

I am on Metoprolol 12.5 mg tid, Ativan 0.5 mg once a day, and was about to start Mestinon but now am relunctant to in case it makes me even worse. I do have Long QT Syndrome, but read that that type of activity doesn't trigger irregular heartbeat for those afflicted by LQTS. I've had dysautonomia (POTS) since June 2011.

My face is beet red while I'm typing this. So embarrassed!!!

[issie]

Don't be. It is a very common response in us with MCAS. Arrousal is one thing that can trigger a mast cell degranulation and cause a massive MCAS attack. It is a scary thing and one that I brought up with Mayo docs about ---so, for me this was the answer. Once proper treatment to keep things as in check as possible ---this rarely happens. If it does ----at least I know what's happening and go and get another vial of GastroCrom and wait a bit and things settle out. I have to keep my H1 and H2's and GastroCrom handy. Sometimes, I'll have to add more in a day - if my body is reacting more than normal. Also, I make sure that I drink enough water. Also, I pay attention to lotions and things used externally - as this could also trigger a reaction.

Issie

[Joann]

Canadiangirl,

I have been embarrassed to ask this also. My POTS started in Sept. of 2011 and although I often am discouraged at how I am functioning, compared to before I am much better. I am also on metroprol 12.5 twice a day and also on doxazosin. I am terrified to be intimate because of this. I have the same symptoms as you, sometimes it will also feel like the area around my nose is being suffocated or I don't know how to explain it. I get pain in my upper left jaw and many of your symptoms, and it can set me back for days/weeks.

I feel like I am crazy, who heard of such a thing. I had to explain my fear to my husband. We had somewhere important to go the next day and I told him there was too likely that I would not be able to do anything for days if we did that. How is that for an excuse?! I felt so stupid, and I know many people will not believe me if I tell them. I told one doctor (cardiologist) and she had no response. None.

I often think how am I suppose to live like this, avoiding stairs, lifting things and anything that is going to trigger arousal or deep emotion?

Issie, so this is common for MCAS but not other POTS? I am still going for testing, I thought maybe hyper pots, because of all my high blood pressure problems, but maybe its MCAS. How do we go about testing for this. If we could get treatment for this that would be soooo awesome.

I have often felt like, although I have been improving, I am not really living, just surviving. Its as if good or bad emotions and any activity can trigger it. What are we suppose to do, just live a blah life?

Canadiangirl, sorry I don't have any answers but just wanted you to know there is someone else having the same problems.

[imapumpkin]

I posted about this several months ago, don't be embarrassed. I don't have MCAS just POTS. It makes me too nervous a lot of the time to get intimate with my bf because my heartrate skyrockets and palpitates all over the place. Issie is right, stay hydrated and take things slow so your body has time to catch up with all the extra stimulation.

[issie]

Since I have POTS and MCAS and have had the two together - it's hard to say which one does what. But, for me using meds that help with MCAS also help with this problem.

I started out by trying H1 and H2's and then adding NasalCrom. All of those things are over the counter. Some have tred this before even seeing a doc about it and then if there is a positive response you have more data to present your case. I found that when a RX of GastroCrom was added to these things - that's what made the most difference for me. Of course, I also have autoimmune issues as some of my problems and GastroCrom works on things of that sort too.

There are so many things that can trigger a mast cell response. Arousal, strong emotions, foods, lotions and soaps, getting overly hot and the list goes on. It's really unpredictable. It can happen out of the blue. That's why for me, I think, suppressing the mast cells from degranulating has made the most difference because I'm not trying to just get rid of the substances that they release - but, stop the release in the first place. The H1 and H2's help in that they sort of correct what has already occured - after the fact. Since there will always be a release - it's trying to get there to be less of a release and not flood the system. We tend to be overly sensitve in nearly every thing.

Issie

[bebe127]

I am so sorry you are having this issue. I have noticed that you are on Metoprolol as am I, although I am on 25mg. 3x a day and on Xanax .5 mg 3x a day and sometimes have to take more Xanax if I know I'm going to be stressed ie: driving somewhere. I do not have the same issues as you as far as intimacy goes (my issues are more in the "no motivation" zone than anything else even though I have severe eye candy at my disposal). Definately bring it up to your dr. Try not to feel embarrassed as we all suffer with different symptoms, many are harder to deal with than others. I wish I had answers for you. {{Hugs}} Sometimes I think that it might be due to meds, although finding out if they are too much or not enough can be challenging to say the least.

I definately feel as though I can react to the weirdest of circumstances. I get more stressed when my daughter is going through teen drama than when even my beloved mother passed away this past Sept. I can't explain it. I don't really think anyone can, other than to say that everyone responds differently to external stimuli.

Hope you get some answers.

[Chaos]

Have had similar issues at time too. Other times, it seems to not be a problem. Then the problem is that you or your partner are so worried that it MIGHT be a problem that it creates other problems. Honestly, seems like you just can't win with this disorder sometimes. It's just a joy every day, never knowing what to expect.

Have you been sick recently? Or are you coming down with anything? Sometimes that will make all the other POTSie stuff flare up and this may have just been the final straw. Have you been keeping up with all the other stuff that you do that's been helpful? Does salt and water loading help? If so, have you been keeping up with it? I know sometimes when I'm feeling better, I get lax about the routine stuff that helps and then have flares. Weather change recently? Change in rest and/or exercise pattern? So many things we all are sensitive too and to me it always kind of like a ticking time bomb where I'm ok, ok, ok, ok, (I mean that relatively of course) and then suddenly REALLY NOT OK!!!. Always seems so sudden but now that I've gone thru several of these flares/relapses, I'm starting to see that there were subtle signs much earlier that I didn't recognize or respond to that occurred before that one BIG EVENT that put me back in bed.

So sorry you're dealing with this! Know that you're not alone in this at all.

[brethor9]

yep happens with me too! and you should never feel embarassed about something natural.....its not like you can control it my husband use to say " my wife is almost passing out during you know (to the specialist) and it certainly isn't because of my performance" lol it can be scary but my episodes are much better now that I am on a medication protocol for MCAS....... but I agree with Issie I don't think it just happens with mast cell issues......I was also tested and showed high catecholamines so I think anytime I have an event that adds more adrenaline my body just can't compensate and it crashes. Perhaps next time you could try taking a small dose of antihistamine and see if it helps? or perhaps a dose of your ativan as that will take the edge off your system......hang in there hugs

Bren

[Relax86]

I'm POTS but not MCAS. Actually in the height of my flare sex helped b/c it increased my BP. But I would often crash afterwards and feel terrible - not because of all the fun, but because of adrenaline...etc. Worry always makes POTs feel worse. I'm a breath holder during...try not to hold your breath. Here's another comment that might get pulled from the forum - but practice yourself. When I said I retrained everything, I meant everything. Driving, light singing, exposure to chatter, TV, light, perfumes/smells, exercise, food...and actually sex. I breath a little different now. And I feel comforted when lots of times POTs is scary. Sex isn't. So I had to retrain my brain to believe some of it. These are just a few things that helped me. Good luck. I've officially discussed having inappropriate lactation over the summer, I believe I've had a poop conversation, and now I've talked about sex both with my partner and with myself. It is what it is....:-)

[Charlotte1]

@Relax86... I love your honesty!! Thanks for that!

[AllAboutPeace]

Hey Canadiangirl,

You are not the first one here to have embarrassing Pots stories of one sort or another...and I'm sure you wont be the last...

Everytime I read your posts I think to myself how much you really need a good, knowledgeable Pots/EP doc to help you sort through all of this. You have soo much going on with the extra heart issues, on top of Pots and given your history of already documented scary arrhythmias, when you say that these were 'super scary', it makes me think that a doc visit may be a good idea. I wish I could share my EP with you - my other docs just give me the deer-in-the-headlights look when I mention arrhythmias.

I hope things settle down for you - soon!

[Canadiangirl73]

I really want to thank everyone for their answers.

Issie: I don't know if I have MCAS on top of POTS. I did have to make major changes to my diet since I became intolerant to lots of foods. So now, I stick to a low starch and sugar diet, lots of fruits and veggies and protein. I also had to eliminate many toiletry products as I started to react badly to them.

Bebe and Brethor: I did think of taking an extra Ativan as it calms down the CNS and hence, the SNS. That's why they don't want us taking any before a tilt as it would affect the results. Maybe I will try IF there is ever a next time

I do find that other sources of stimulation make my system haywire: fluorescent light, flickering lights, violent, funny or tearjerker movies, etc. It is very unpredictable and that's what makes it so frustrating. So, Joan, Pumpkin, Chaos and Relax, I totally understand what you mean by getting easily overstimulated and having to retrain your ANS.

Peace: You are right. I really do need someone who LISTENS to me. I saw many EPs and they all had conflicting opinions. I traveled 6 to 7 hours from my city to see a POTS specialist-EP who believed I had two distinct problems: arrhythmias and autonomic dysfunction. He wanted to do an EP study at a later appt. However, since my body didn't tolerate the trip well at all, my GP thought of asking (again!) one of the EPs I had seen in my city to perform one. Well, that didn't go down well. The EP, who lacks knowledge of autonomic dysfunction, said it was unnecessary since my arrhythmias, although varied and numerous, didn't warrant an EP study because of their nature and duration. And to add insult to injury, he told her I should go see a shrink!!!! I was speechless. I just couldn't believe that this guy was still hung up on the anxiety BS. I mean, I have sooooooo many results that point to dysautonomia, saw two psychologists who had me take all tests available and told me I wasn't anxious, but frustrated from not being heard and treated properly. Thing is, another EP bullied me, verbally abused me, was violent, belittled me, etc., and wrote nasty wrongful things about me in my chart, so how is a fellow co-worker of his supposed to not have a bias opinion? If I go to the ER, docs also read those things and I get treated very poorly. All that too after I have seen the POTS specialist-EP who told me EVERY POTS patient he ever saw had been told they were nuts and it is not the case. He told me this wasn't anxiety, never was and never will be, but my ANS being in sympathetic overdrive. Anyhow, so I am now supposed to travel to another city (closer) to go see another EP. Hopefully, this will be a fruitful appointment.

Again, thank you all!

[bebe127]

Canadiangirl,

I'm so sorry you are having to deal with idiotic doctors. Unfortunately, I (and many others on this site) know all too well what you are going through. My second opinion EP (in the next county up) was supposedly an "expert" and I got pretty much the same treatment as you did. He concurred with the original dx of POTS however said I had a "mild case" since I didn't faint. That right there should've told me that this dr. wasn't worth my time. I then went into all the other symptoms I was having as per Dinet.org information that the original dx dr. gave me and he told me that none of them had anything to do with POTS! Then I expressed my concern about my chest pain and discomfort. He reluctantly asked me to show him where, as if he was placating me, and then told me that my chest pain and discomfort had nothing to do with my heart. He did no testing whatsoever, nor did he suggest any further testing. Pray tell, to whom shall I speak, if not a cardiac specialist about chest pain and discomfort?? After all that, I shut down and was in tears. The dr. asked my husband, who was present for the entire visit, what I was crying for !?!?! My husband expressed that I was frustrated about going to dr.s and getting no real answers and having to just deal with this on our own. The dr., like yours, then suggested I see a therapist. He had told me in an earlier visit that he thought I had developed situational anxiety.

Moral of the story: There are idiotic doctors everywhere. We will have upsetting visits, but we can keep up the search. I do believe that there are good doctors out there, we just have to keep our chins and hopes up that the one we are looking for is right around the corner.

I sure hope you get some answers soon. Know that you are not alone in any of this.

Feel better

[Muon]

On 2/20/2013 at 9:40 PM, Canadiangirl73 said:

So here it goes: whenever my husband and I try to get intimate I get real sick. This happened a few days ago: I got tremors, chills, nausea, sky high blood pressure that lasted for over 24 hours, low grade fever, and worst of all, severe arrhythmias.

Could be MCAS or POIS. People with POIS could get sick from arousal alone. 

 

[MeganMN]

So I was reading all these posts and not really thinking about any of it related to me and then last night, my poor hubby wanted some intimate time and I completely freaked out and felt like I was going to die.  My hands and feet were tingly, felt super heavy, my body felt weird, cannot explain it, felt like my blood pressure maybe was super low but it wasn't when he checked it.  I felt like my heart was beating funny but it wasnt. I could not get a breath and kept having to yawn and then got all trembly and twitchy in my legs. it was AWFUL and my hubby felt like poo because he felt like it must be because I didn't want to be intimate. The whole thing was so rotten.  Never happened to me before. I always flushed but never anything like that!!

[Pistol]

@MeganMN - what you describe sounds like what I have when in a hyper-POTS attack. Especially the yawning and trembling. My cardiologist said that this a reaction to high adrenaline output - in my case it causes vasoconstriction which leads to low O2 levels and to compensate this the body trembles to keep us warm and we yawn to get more air in. And the feeling that your heart was beating funny is from the heart beating extra strong to pump it through the constricted blood vessels. Sorry you had this happen - I hope your husband does not feel too bad. And I hope it will not happen again!!!!

[MeganMN]

@Pistol thanks- it was actually awful- my hubby did not deal with it very well, he felt pretty upset.  This whole thing is just so goofy and life changing. That is the part that most doctors do not seem to get.