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issie

Pots And Sex

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What do you do for POTS symptoms when you're either having sex or after? This problem is especially true for those who have the hyperadrenal type of POTS.

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I have the hyperadrenegic POTs. My heart will race afterwards, but I just relax and my heart calms down. What sort of problems are you having. Sex usually makes me feel better even if my heart races a little(I think this is normal for everyone).

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Complete POTS symptoms:

Hot flashes

BP and pulse issues

Adrenal surges that cause anxiety

I'm sure there may be more, but these are the most troublesome. I had been told that this is common with POTS, but I haven't noticed many comments on the forum about it. Not getting many comments back on this question either. Maybe people don't want to talk about it since it is a sensitive issue. But, wondering if others are having these issues too. I had been told that the autonomic system can malfunction with the hormones and that is what causes the issues. Anyone read anything on it?

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For me it is worse at certain times of the month (like the week before my period). It is best right around ovulation. Also, the best time of the day for me is in the morning. That way if I'm feeling tachy, I just get up and do some light housework as a distraction. If I do it right before bed, my heartrate goes up and I can't go to sleep for about an hour (too much adrenaline)

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Actually there have been several previous threads about the effects of intercourse. Flushing, tachycardia and worsening of symptoms are all VERY common after sex. My OB/GYN says that sex releases "a whole lot of catecholamines" if you do it right. :) I get vicious headaches afterwards, as well as all the other stuff. Honestly, the only things I've found that help are Klonopin and sleep.

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Complete POTS symptoms:

Hot flashes

BP and pulse issues

Adrenal surges that cause anxiety

I'm sure there may be more, but these are the most troublesome. I had been told that this is common with POTS, but I haven't noticed many comments on the forum about it. Not getting many comments back on this question either. Maybe people don't want to talk about it since it is a sensitive issue. But, wondering if others are having these issues too. I had been told that the autonomic system can malfunction with the hormones and that is what causes the issues. Anyone read anything on it?

Hi Issie,

Are you having the hot flashes at any other time or just during/after sex? If you are having them at other times you may want to have your hormones checked. I do tend to feel worse around my menstrual cycles.

I do have the pulse problem during and right after sex, but I don't have any of your other problems. I usually feel relaxed and sleepy afterwards. As my brand new cardiologist(as of today) told me, you haven't died yet, so I doubt this will kill you, lol. Maybe you should relax and meditate beforehand. It may just be that you are anxious about how it's going to affect you. I'm not sure what medicine you are taking for you POTs. I am on clonidine, and my cardiologist(diagnostic back in the States) told me that I could take a little bit more if I am feeling really POTsy. That has helped me get over some really bad episodes. You could try talking to your dr and see if you can take a little extra medication when you know your going to have sex. I hope you get this worked out. I know that has got to be tough. Good luck on finding an answer or at least a solution that helps.

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Take a break if you can if things are not in critical moments for either of you ! :) Tyr positions where you don't have to move your head around...supine or on side.

Get creative. There are many ways to have sex w/o wearing us out, though orgasm is exhausting but worth it..though with ANS issues can cause anorgasmia (INABILITY to have orgasm at the time we want too!!) so you can learn to work around that. There are many things I've learned over the years but not sure I could go into detail here that are very helpful. Look into Tantric sex or Tao sex for the alleged extended orgasms which are really just very extended forms of heightened pleasure (In some ways BETTER than the quick 'genital sneeze' as I say though you don't get that release from the big O=however it still keeps me smiling the rest of the day, and well, you can finish things off later if you catch my drift) I am talking heightened pleasure almost to the point of no return, or when you KNOW an orgasm is going to happen. I discovered this accidentally about 15 years ago.

I'm not with a full-time special significant other at the moment but do 'see' an old friend I've known for many years when he's in town and it's a bummer when my earth, moon, and stars and dysautonomia do NOT COOPERATE.

But like I said, get creative, be open-minded to new things (I'm not talking toys though that works for some people) If you can totally be yourself with a partner, there are many ways to work around the triggers. And the physical intimacy is worth it..and also critical imho if you are married/or in full time relationship with a person.

I've often wondered about doing an internet show on sex for disabled but know that folks would be too shy to call in thus, never did. :-D

But I certainly do have some great tips!!!

No brag, just fact. You can google many things on the internet to help out in this situation. But avoid the stuff that makes you feel you have to do gymnastics or get in pretzel positions to 'make things happen'.

Good luck

p.s. this link gives some good general tips for disabled though it's aimed at those with spinal injuries. But it might be helpful for some to open conversations with loved ones.

http://www.thesite.org/sexandrelationships...enyouredisabled

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jenwic - I'm with you on the morning time. If we enjoy ourselves in the afternoon or night - I can forget sleep. Not going to happen - I totally wake up and have a complete adrenal surge and nervous energy.

firewatcher - Maybe the Klonipin might help, but - I'm afraid to try it at night because by BP goes really low in the night when I sleep or try to sleep. I've found that if I elevate my head though it doesn't drop out so bad. I also have sleep apenea and at times my brain doesn't tell me to breathe, so I think a sedative type drug may make this worse. I'll try to pull up some of the older threads and read them.

nmorgan- Thanks for your input. At present, I'm not on any type of medicine. Recent move and haven't found a doctor to follow up with. Using natural things at present. Couldn't do beta blockers or flornif.

Simmy - good for you!!!! You've got a good one there. Sounds like she really loves you and tries to keep you happy and works with your body and what it can and cannot do. Keep her happy!!!!

Sophia3 - sounds like you've figured out some things. I'll be sending you a PM. I'd like to hear what's worked for you. Thanks for your input.

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Sophia 3

I'm post menopausal and my 'big O's' have been replaced by exended (very extended) orgasms or as you put it 'very extended forms of heightened pleasure.' I miss the big orgasims but not sure I'd trade them for what i can experience now

My problem is that being post menopausal and unable to take HRT (and I even react to eostrogen type vaginal cream) I'm -- to use Whoopi Goldberg's analogy -- 'as dry as the Sahara Desert.' Having a really bad time with this that has put a stop to my sex life because it's too painful. And that is making me miserable. They do say 'use it or lose it' (in regards to vaginal lubrication) but I used it and lost it anyway.

I have to stay away from 'natural remedies' too. Most are herbal and high in salicylate content and I react to salicylate. I got quite excited about SYLK, made in NZ apparently, when I first read about it. Only to find myself standing in the pharmacy reading on the label that it is made from Kiwi Fruit. Kiwi Fruit is very high in salicylates. I guess I'm going to have to ask my allergist/immunologist if I should give it a try and see if I get skin burning reactions.

As to faster heart beat etc, I also agree with others. Until I was unable to have sex with this latest problem, I found it much better to do it in the very early evening as I feel better by bed time. At any rate, good sex is so much better than sleep if it comes to a trade off. It took Hubby a while to understand that if we didn't have it as soon as he got home from work he wasn't going to have it at all.

Thing is, not only does 'no sex' make me miserable, it also really negatively impacts on relationship between hubby and me. He feels rejected and gets angry. I feel miserable and 'sexless.' Like I'm a 'sex free zone.''

blue ;)

-

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WOW that stinks about the dry issue and you can't use ANY of the lubricants?! No answer for that.

Just have to get 'creative' for hubby and do other things. Gotta think of his needs even if ours are limited. Heck the late Christopher Reeve still enjoyed sex as a quadriplegic. He said he and his wife got very creative....so read up on sex for disabled people. You can get great tips. Good luck.

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Hi Blue,

Wow, I am so sorry about your problems. Have you asked you GYN if you can use lanolin. I know it's thick but you could thin it possibly with Vit E oil and it has a greasy kind of consistency. It might work for a quicky if you know what I mean. Maybe they will come up with something soon for everyone suffering from salicylate problems.

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Yes Issie, she is wonderful and I'm very lucky to have her. I have hypo-POTS and when I tried being on top my heart rate went ballistic immediately and everything stopped, but when I'm on my back it never passes 90bpm, even when I finish. Obviously, for hyper-POTS it is different.

I agree, Sophia, but Blue's husband must also meet her needs and can supply a different natural lubricant for her by initially being 'creative' himself (which is one way I keep my wife very happy). Afterwards and once inside, he then continues to supply all needed lubrication via another natural 'pre'-method, but, and here's the key, it must be done slowly with full range - 'nearly exiting' every time so the entire expanse remains sufficiently lubricated.

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Hey Issie -

Just offering support that I experience the EXACT same symptoms you do and it has nothing to do with the position, etc., but the actual part of leading up to the big "O" and if I end up with the big "O", I'm in big trouble with symptoms just as you described. I wish I could tell you what helps, but it's the hyperadgrengic - excess catachomines being released that cause all the symptoms. My neurologist recommened I try taking an extra 1/2 of my beta-blocker about an hour before hand and try that, but I just feel too sick to even go down that road right now. Also Klonopin he suggested might help, but again, haven't tried that either. Talk with your neurologist and he might be able to give you more ideas on how to cope with this specific situation.

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beta blockers and other meds mess UP the ability for orgasm, too...so it's tricky. I admit I've had times or arousal where my HR was so high, and chest pounding, I had to take a break and just lie still for a couple of minutes..it happens....but sex is still worth it.

Simmy

True about meeting a wife's needs but I was speaking of the times when women with this ANS junk sometimes are just too tired or go thru a period where they'd just as soon not have sex. and for many, apparently that happens!...then you have to remember the other person's needs...but yes, life/communication/sex should ALWAYS be a two way street, 50/50 situation. BUT, sometimes the other person may need to take or give 75% during times of extreme fatigue. As long as the other person knows it's not neglect but physical symptoms interferring, the relationship will not suffer, hopefully.

COMMUNICATE! Read & talk/COMMUNICATE some more!

:P

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sex....now my children maybe reading this. hum...,

would be nice if i had the perfect man in my life .... though

meeting someone now is hard, being home bound and in hospital

2 full says a week. but when they ask my status, i say single and looking...

at least i can still laugh..... <3 i'm sure one day i'll find the real deal as my little gd

tells me and I'll bring this post right back up, cause i may have pots but my heart sure needs loving.

God will lead me to the right person hopefully soon..... ; ) bellamia~*

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I know some people are not going to agree to the form of oil I'm about to suggest. But, mineral oil works great. It isn't from a plant source so no salicylates. It's also clear, no dye. And it's really cheap.

Sophia 3

I'm post menopausal and my 'big O's' have been replaced by exended (very extended) orgasms or as you put it 'very extended forms of heightened pleasure.' I miss the big orgasims but not sure I'd trade them for what i can experience now

My problem is that being post menopausal and unable to take HRT (and I even react to eostrogen type vaginal cream) I'm -- to use Whoopi Goldberg's analogy -- 'as dry as the Sahara Desert.' Having a really bad time with this that has put a stop to my sex life because it's too painful. And that is making me miserable. They do say 'use it or lose it' (in regards to vaginal lubrication) but I used it and lost it anyway.

I have to stay away from 'natural remedies' too. Most are herbal and high in salicylate content and I react to salicylate. I got quite excited about SYLK, made in NZ apparently, when I first read about it. Only to find myself standing in the pharmacy reading on the label that it is made from Kiwi Fruit. Kiwi Fruit is very high in salicylates. I guess I'm going to have to ask my allergist/immunologist if I should give it a try and see if I get skin burning reactions.

As to faster heart beat etc, I also agree with others. Until I was unable to have sex with this latest problem, I found it much better to do it in the very early evening as I feel better by bed time. At any rate, good sex is so much better than sleep if it comes to a trade off. It took Hubby a while to understand that if we didn't have it as soon as he got home from work he wasn't going to have it at all.

Thing is, not only does 'no sex' make me miserable, it also really negatively impacts on relationship between hubby and me. He feels rejected and gets angry. I feel miserable and 'sexless.' Like I'm a 'sex free zone.''

blue :P

-

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Hey Issie -

Just offering support that I experience the EXACT same symptoms you do and it has nothing to do with the position, etc., but the actual part of leading up to the big "O" and if I end up with the big "O", I'm in big trouble with symptoms just as you described. I wish I could tell you what helps, but it's the hyperadgrengic - excess catachomines being released that cause all the symptoms. My neurologist recommened I try taking an extra 1/2 of my beta-blocker about an hour before hand and try that, but I just feel too sick to even go down that road right now. Also Klonopin he suggested might help, but again, haven't tried that either. Talk with your neurologist and he might be able to give you more ideas on how to cope with this specific situation.

Tammy,

Glad to know I'm not unique in this. Thanks for your support. Just simply lying close starts the hot flashes. It has to be some sort of hormone release and related to the POTS. And, you're right, position doesn't matter on these symptoms. Thank goodness I have a very loving and understanding husband. He can tell when the flashes are about to start before I can.

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I know some people are not going to agree to the form of oil I'm about to suggest. But, mineral oil works great. It isn't from a plant source so no salicylates. It's also clear, no dye. And it's really cheap.

I'm actually going to agree with this one Issie. Just make sure that you use the plain old mineral oil with no scent. You should be good to go! :P

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I have one of the worst responses to sex that exist in the medical world, in fact a lot more severe then any other POTS patient, and there is a reason why I am one of the worst cases out there...it is a somewhat a sensitive and emberassing story which I dont like to discuss but in this case I'm going to disclose what happened to me although you guys will certainly think I am an idiot for this...

I actually damaged my Autonomic System and developed POTS during a recreational drug overdose on ecstacy and methamphetamines whilst a few hours into sexual activity. The fact that I overdosed and developed life threatening hyperthermia during sex whilst my brain chemistry was already flooded with sex hormones released in the brain during sex such as testosterone, vasopressin, oxytocin and dopamine in fact ruined my brain chemistry at its most vulnarable stage during the overdose leaving me with a very unusal version of Dysautonomia. So for the past 10 years whenever I feel aroused I go into a violent and painful muscle spams, hypertenison, arythmias and if I preceed past that point and engage in actual sexual activity I end up with hyperthermia, very rapid hr, disiness, nausea, chills, hypertension and in need of medical treatment, there have been many times where I have ended up in the ER simply for engaging in sexual activity.

I have had high temeperature readings in hospital where they were amazed that I could develop without any other signs of infection or virul causes. I have even lost count as to have many near death type experiences I have had simply because sexual activity made me so horribly ill I didnt think I would live through it.

I also made a post about the topic of sex and Pots in the past titled: Anyone Else Get Really Ill From Sexual Activity ?

http://dinet.ipbhost.com/index.php?showtopic=14427&hl=

For me it has nothing to do with the streneous activity or the physical movement from sex, it is all due to the brain activity that sex seems to mess up in me and unfortunately as far as I know there is no cure for this, although I have contemplated that if I could possibly stabilse my brain chemistry by increasing or decreasing my seretonin, dopamine, testostorone and all the other brain chemical levels involved in sexual activity and thermoregualtion I might find some relief however this is risky and experimental.

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Endure,

I'm so sorry to hear about the way you developed POTS. In that some of us are expressing severe hot flashes with arousal, maybe this is something that our hormones are causing to happen. I don't know if possibly hormone checks would be beneficial or not. I'm post menapausal due to an early in life hysteretomy. Hormone issues involved in that too -- endometrosis. Too much estrogen is the thought in this problem, an imbalance between the estrogen and progestrone.

I seem to have the hyperadrenal type of POTS (though not officially diagnosised, but have ALL the symptoms of it.) I've had adrenal issues in my past and had to use cortisol several times, due to it being low. But, from the way my body looks, I'm overweight, the cortisol should be high. It's not though according to the test. I don't officially have Addisons, because the hormone that was supposed to go up during the test - did.

I think that the hormones do play a key factor in our illness. But, it's not just one endocrine system, it's all of them. And because when our levels or functions are checked and at the time of checking they may come back okay - an endcronologist just thinks it's all in our heads because they can't pick up anything.

Because of the dysfunction of our Autonomic system, which we all know goes completely haywire, I think at certain times when our body releases certain chemicals we over react to the stimulus of the hormone. There is a book I read a while back about the "canary people". Well, they used the canary in the mine as an example. When they take a bird into the mine to check for gases, etc. A birds system is so sensitive to be able to pick up problems and it will die from the slightest problem. The miners know not to go into that vein because the bird died. Maybe there are some of us whose systems are so sensitive that we pick up the slightest problems, unlike the majority of the world. Our bodies are in a constant hyper state, always on alert. We seem to have more food allergies, chemical sensitivities, hormone issues etc.

It is very difficult for us because our systems over react to nearly everything. It may not be altogether BAD but for us it is life limiting. If we could just get our bodies to be somewhere in the middle. It makes me wonder if there isn't some type of autoimmune issue going on too. It seems that it could be a possibility. For sure allergies play a part. Some have the Mast Cell disorder that is related to allergies. I bet they will find that this is an autoimmue issue in years to come.

I do know that inflamation is a big player in my case. My body has arthritis all over it and there isn't one vertabrae or joint unaffected. I do not have positives for ANA however. So they say it is osteo not rhematoid. At present, I'm attempting a food elimanation program to see if food allergies could be affecting this.

As far as sex goes, for you Endure, I hope you will attempt to try to balance ALL your hormones because it seems that you do have us beat with the severity of your issues. I can still enjoy sex, but do have issues before, during and after. But, for you honey, it doesn't seem like it is worth the trauma that it causes to your body. Please keep us posted. Maybe your success will help us find answers too.

I don't want this to sound insensitive, but during your sexual experience with the drugs, was it a good experience or a bad one? If it was tramatic, you could be suffereing from post tramatic stress syndrome. Some of the soldiers from war and other abused people suffer from this. There are medicines they can give to help with this and most of the time there is talk therapy for whatever the trauma was to help your mind to be able to cope with what happened to you. Our bodies can react very strongly to situations that take us back to unpleasurable, tramatic events. Not saying that this is true in your case, just asking the question. In fact, that would be a good question to ask as a conversation. I think, I'll put it in a thread. You don't need to reply to this question, just something to ponder over.

Hoping for answers to come your way.

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Endure,

I knew I had read this somewhere.... I'm so very sorry for your pain and suffering. I also admire your courage for being brave enough to tell your story.....I will pray that healing energy surrounds you and heals you right away.

thank you for sharing.... hang in there.

xxx's

bellamia~*

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Thank you for your well wishes. :)

Issie your question is not the least insensitive, and believe me I have explored that possibilty of post traumatic stress so many times over the years because it was the very first thing all my specialists and doctors questioned when they were confronted with my uncommon and unusual situation. It is natural for people to look for a more logical answer especially when a situation is as bizarre and unheard of as this but in this case I can assure you there is no psychological factor and I will explain a little as to why...

I had been using drugs for many years at rave party's before the overdose incidence had occurred, I had never previously had an unpleasant experience and I had no prior health problems before the overdose. It was that one single incidence 10 years ago when after ingesting a combination of drugs followed by sexual activity when the overdose hit me, I ran for the cold shower to combat the hyperthermia whilst awaiting the paramedics, I lost consciousness in the ambulance, and later was revived in an ice bath and given counteractive drugs to treat the overdose but it was all too little too late as I had already suffered the damage and since that awful day 10 years ago nothing has been the same. Not only did I instantly develop Dysautonomia and these odd sexual problems, I also could not leave my house for 10 months because I had to be constantly in front of a cooling system everyday because I was constantly overheating 24/7, every symptom I had was excessively bizzare and even beyond POTS, I found that every time I experienced an arousal my temperature would fluctuate very rapidly where every single minute it would go up and down giving me a different reading on the thermometer, but when I wasn't aroused my temperature although elevated was gradually shifting throughout the day as it should. So this is only one example and proof that what I have is not of a psychological nature. I also have written several pages of other evidence I show doctors that what I have is in no way related to post traumatic stress, psychosomatic, conversion disorder or and other psychological factor. I would explain all my other evidence and reasosn but it would end up a very long read.

I understand my symptoms sound plausable but every one of my odd and excessive Dysautonomia symptoms is a testament that the damage I incured was of an unusual nature and because of this even my Neurologist have agreed that for me to end up so different from you guys there had to be a factor out of the normal and this is where the sexual activity comes in, the fact that not only did I develop dysautonomia directly as a result of a neuro toxic exposure to illicit substances but the fact that the overdose actually occured whilst my brain chemistry was further shuffled by the prolonged sexual activity I was engaged in from the effects of the drugs. Which is why I have ended up so different then average Dysautonomia patient, because that was the only different thing I did.

Furthermore since that day I have found myself stuck with adverse reactions and hypersensitivity towards every single opiate, sedative, analgesic and stimulant on the market. So here we have another odd quirk and so many doctors have said the reason why I have adverse reactions to all these substances is perhaps because I had an overdose and now I am having post traumatic stress towards drugs and sex. However after pleading with my neurologist to administer the offending substance under labratory supervision whilst monitoring my vitals he is now convinced there is no pyschological factor as all the respiratory depression, lowered oygen levels, hyperthermia, arrythmias, and my calm state of mind during the reaction proved to him there is more to it...So I finally have evidence now to show the medical world however the frustrating thing is that I am stuck in such a crazy and unusual situation that all my odd quirks can be labeled as post traumatic stress making it difficult for me to find help as every odd symptom has some sort of relation to my initial overdose. It raises the question did the egg come first or the chicken and in my case am I having problems with sexual activity, adverse reactions to all psychoactive drugs and thermoregulation because I had a bad experience 10 years ago on drugs whilst having sex and felt feverish, or...am I having these symptoms because the drug overdose and hyperthermia damaged my hypothalmus, thermoregulatory controls and areas that govern sexual activity leaving me with these odd symptoms and the adverse effects I have towards all drugs is due to messed up brain chemistry and seretonin levels and hypersensitivity from the Autonomic damage ?

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Endure,

I had guessed that you had explored the possibility of the post traumatic stress. But, just threw it out just in case it hadn't been considered.

As for the reaction to drugs. I'm not and have never been a drug user. I tend to lean towards alternative treatments. But, at this point in time with the POTS, I am trying some different drugs to see if it will help with these issues. I also have had whats called a paradox reaction to nearly everything I've tried. That means that the drug does the complete opposite of what it is supposed to do. I can't blame this on a drug party, because I've never done drugs of any sort. I think that the drug paradox is related to the systemic issues in the body. Not to mention that at one minute you may need one thing, and at another minute the opposite. With the wild swings in the autonomic system, (I believe) there are just as wild of swings in the hormones and chemicals that are naturally present in our bodies. I feel the drastic swings are why we are so sensitive to everything. We're in a constant swing of extremes.

Therefore, what will work for one, won't work for another. This is also true of natural substances (herbs, vitamins, minerals). What will work one day, may not work the next day. Etc., Etc. You get what I'm saying?

I'm so glad that you at least got your doctor to listen to you and do the experiment and find out that what you were telling them was true. People that don't have this can't understand the wild swings and the odd differences. Maybe seeing scientific proof will convince some. But, I think, they will never really understand all the ups and downs, from second to second. That's why I question whether or not having hormones checked at one time will make that much difference. With the different reactions from second to second and the different needs from day to day. It's hard to say "here take so much of this every day." It may build up and not be eliminated and you will over medicate one day and under medicate the next. It's hard to figure out the balance or to know exactly what you should or should not take for that day. I know with vitamins, herbs - if they smell terrible to you ---you don't need them that day. Wish this trick would work with RX's too.

Thank you for sharing your story with us. It lets us see how interconnected our bodies are and how hormones and emotional related hormones inter play. We really are quite complex creatures, aren't we?

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