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Intimacy questions, etc


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I want to address something and I hope it doesn't offend anyone but I bet there are others out there with the same questions(atleast I hope so).....

Actually, I will just put it in question form:

1. Has anyone else experienced a huge decrease in wanting to be "intimate"?

2. Does anyone else have numbness in that area? I have it from time to time and it is generally on one side only.

3. When you get intimate with your partner do you have such bad palpitations that you have to quit? It seems like every time I finally am able to get intimate, I get these crazy heart rythms that make us have to stop(the rate is not always fast, just irregular)

4. Do you have these same crazy beats when you get the least bit excited, slightly angry, sad, tired, etc. I can say that the LEAST little bit of ANY emotion sends my heart into craziness-just wondering if that is normal with POTS or if it may be something else. I can be scary and very bothersome.

Thanks for everyone's help with these questions, hope I didn't offend anyone.

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You are not alone!

1. Absolutely. Between lack of desire and lack of energy, it's a killer - even with a wonderfully understanding partner.

2. Once in a while but more overall than one-sided.

3. Palps, etc. have been there in the past, but never so bad I had to quit. Sometimes helps to cough. Because I know it's more annoying than harmful, I don't worry about it.

4. Yes - it's from an adrenaline rush that our bodies don't handle properly.

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No offense taken here, for sure.

1. I definitely have a decrease in desire, mainly due to being soooo tired all the time- but then there are times when do actually feel like it.

2. I have never experienced numbness, but would imagine that could also be a ANS function gone awry.

3. I do get palpitations, but have gotten used to it. They usually settle down within a few minutes afterwards.

4. I definitely get heart palps and of course tachycardia when I get angry, nervous, or excited- and it is scary, but again it's something I think I have gotten used to :P I have learned to control my emotions a bit more too, so I don't allow myself to get extremely angry or anything.

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When I was first sick I definitely had a decrease in desire, and sometimes I would shake and shake with my heart speeding out of control afterwards. A friend and I were discussing the whole sex connection and he said he'd learned in college that the parasympathetic nervous system is responsible for arousal, while the sympathetic gets you to orgasm (sorry I'm being so blunt...for those of you who don't want to talk sex...you might want to just stop here). The way he had been taught it made me laugh....Parasympathetic = Point and Sympathetic = Shoot (Of course, I'm referring to guys here, ladies) The parasympathetic and sympathetic nervous systems are divisions of the autonomic nervous system.

I never experienced numbness. I did get palps at other times, but rarely as bad as I did after sex.

On the bright side, as I slowly began to recover from POTS the symptoms after sex lessened too. Today I can enjoy sex again without any weird symptoms (Hallelujah!). So hang in there...things can get better.


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WOW I am glad you asked because I have been too embarressed to do so. I have "NO' desire whatsoever. I actually could care less. I have talked to Grubb about this and he has suggested medications but I am so sensitive I hate to mess up what I have established so far. I have thought about using some of the over the counter creams but haven't done so yet.

I don't get palpatations any more but my husband may if he is ever lucky again :P

Thanks for asking the question Lorrell.


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Thanks for posting this question.

1. YES. I think between being a mom of a baby and now toddler, being on prozac and being tired from POTS, my desire has plummeted. Also, my daughter sleeps in our bed, so that doesn't really help matters either.

2. No, I have never noticed numbness of any kind.

3. I often get irregular rythms when exercising, or combined with adrenaline or emotion, it is even worse. I find that drinking much water/fluid before exercise (of any kind :P) helps to reduce this. But, I have to say, that I have also gotten used to it, and it doesn't alarm me like it used to.

4. When I get angry, I get the WORST palpitations. Not that this happens frequently. But, for example, last week I was really angry with a co-worker for his usual lack of attention to detail resulting in poor product, and I had to sit down and calm down--I was having a lot of palpitations. I also get very shaky--it seems like many of my POTS symptoms resurface, in response to strong negative emotion. It's such a pain!--it makes one feel much less in control!


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I want to add my two cents about that.............you know how some of us get short of breath, well that happens to me sometime during sex and I actually feel like I am gonna stop breathing and I am not talking about the normal "fast breathing" you get during this act. It has scared me enough that sometimes I get too paranoid and decline my husbands advances.


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count me in too!

Little desire, no energy, numbness on one side, shortness of breath.

Those of you on SSRI - this is a direct side effect of the antidepressants. I don't take those but still have these problems. Autonomic related, chronic illness related, or hormonal related it just isn't what is used to be....lol.

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What I find that really helps is RELAXATION. Sorry if this is too graphic, but here is what my fiance and I do:

1) RELAX! My fiance gives me a nice massage before sex. We get so stressed running our daily lives, that we don't take time to unwind. Message stimulates the capillaries, and being POTS patients, we all have trouble with those little buggers :P ! A nice massage does help to increase blood flow, and this can help with the numbness anywhere on our bodies.

2) Breathing: I am a firm practicer of Yoga. I practice deep breathing, and I do this BEFORE I have sex. It helps me relax, and focus at the same time. If things start to get too intense, we simply slow down, I reconnect with my breathing, and go from there.

3) Vaginal dryness and numbness: I learned this from my OB/GYN, who by the grace of God, is familiar with Dysautonomias. People with ANS malfunctions tend to run on the dry side everywhere, eyes, mouth, throat, etc. What he advised was two things: 1) Use of lubricant, not just during sex, but periodically throughout the day. I use KY silk-e, it seems to work the best. 2) There is a product called Refresh or Replens. I use it as well. What can happen is, the dryness can throw the PH balance off inside of the vagina. This can lead to dryness and numbness. This stuff helps replenish the PH balance.

Hope this helps! Good luck!

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Guest Julia59

The desire is sometimes not there, but I still go ahead with my husbands advances, because everthing usually works out.

My desire is mostly messed up from the fatigue, or pain from my cervical stenosis/chiari. The good news is that my ability to reach orgasm is fine!

I don't really have any palpitations during or after sex. However, I do have some numbness which i'm sure is due to the upper spine compression---plus I also have problems with my coccyx area after the birth of my son. If it's bothering me, it usually also causes some numbness in the area.

The Wellbutrin does not affect me in the desire department----or the orgasm department. But I do think the propranolol can sometimes put a damper on things.

Julie :0)

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I know how you feel, I've worked out a few things that work for us.

1. More play before sex. The actual act of intercourse goes a little quicker when you're a little more "excited"

2. BREATH, never hold your breath. Slow down, don't nec. have to stop.

3. Positions, experiment with them. I know it sounds bad but rent some videos on Kuma Satra, I can't lay down flat but I can do other things! And I'm a heavy weight(260 lbs).

4. Again, as earlier, message is relaxing. Try reading up of sensual message, great stuff.

5. Lack of desire? oh yah. been there, done that. If it doesn't bother you, mabey offer your partner a "hand job". My hubby and I did this often when I had no desire.

Best of Luck


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I'm with Lorrell! Cheers to a good day ;-)

I tend to get palpitations if I have been standing for a while and then sit or lie down quickly. I like everyone's suggestions about pace, and slowing things down. Maybe this is why this works so well for me and my husband. We tend to lie together for a really long time, with just very slow gentle touching. Which eventually leads (or not) to a very slow session of love making. Either on our sides, or me on top. Oh and it has to either be really early in the evening or when the kids are napping on the weekend. My system would break down if I tried to stay up late for romance. On the few times I've done this, I tend to tremble and collapse afterwards and feel sick the next day.

So much of intimacy in a relationship happens outside of the bedroom. I often tell my friends (who don't have POTS just low/no desire) to focus on some of the cuddling and quiet times with candle light or soft music instead of more physical activity and let your partnet know what you do and do not have in mind.

Good thoughts.


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Dear All

I wanted to add some positive ness. I have the heart, tiredness, pain and many wonderful things happening in my body. But not once have I thought of declining my husband. He is amazing, the more I get to know him the more attracted I am to him. I am absolutely adicted to him. Definitely have a higher sex drive than him. I always say if other women know what I know about my husband I would have allot of competition. I have just had an operation last week and he but always just amazes me on his sensitivity and pacients. Any way I love him to bits and get excited every time as if it is the first. Seven years later and he still makes my tummy turn when he kisses me.

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