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Is it just me, or are social events tiring & stressful to anyone else? I enjoy seeing & visiting with people but after an hour I feel like I've tried to run a marathon. I always end up with a migraine headache. My brain has to work overtime trying to remember everyone's name & try to carry on a sensible conversation. It seems to take me 2 or 3 days to rest from this. I feel better to never leave my home but I know it isn't good to stay completely isolated from people. Thanks for your response.

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I totally agree. The worst is when I am in a large group of people I don't know very well trying to think of something to talk about. Even going on a car trip with my 3 rowdy boys can give me a headache (wait a minute, I think anyone with 3 boys could say that :rolleyes: )

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I have lots of trouble with this too. I talked to my neurologist about it and she says it's probably and indication of the severity of cerebral hypoperfusion. If we aren't getting enough blood/oxygen to our brain even things like concentrating can be difficult and tiring. I went to friends' last night, and actually did better socially than I have done for years, which was really hopeful for me.

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I am extremely oversensitive to social events/ movements/ noises /lighting pretty much everything, and I have formed an anger about it which lead me to start desensitizing myself subjecting myself over time to the triggers and it has been working. When I 1st became ill I couldn't even ride in the car with music on the movement of traffic the noise was just tooo much so for the last year I have been wearing headphones at home listening to music kind of loudly and have taught myself to relax and it has really worked. I'd get the same feelings while in groups (socializing) I have had to build up tolerance slowly and tell myself * You are fine * the most harmful thing I have realized is when I feel wiped out I can't rest for too long I have to stay active sitting up instead of laying and not avoiding everything. I feel 60% better during this past 2 weeks than I have in a long time I have been pushing and pushing myself and I know if you have mental strength and determination you can progress immensely.Whatever you do do not avoid situations unless they are dangerous, uncomfortablity sometimes isn't so bad because if you end up like I was avoiding everything I think thats more harm than good emotionally which affects you physically.

Hopefully this encourages some:)

I actually have been walking around Super walmart and getting some sun *recovering from a sunburn:()I stayed outside having a yardsale for 8 hours 2 days ago and I was so amazed by my activity lately. I hope others are having some improvements too and I'd love to hear about it.

Lissy

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I totally agree with everything you've said. My social life is practically zero because being among people exhaust me and I feel extra confused.. In addition, people don't understand that and I feel even more worse..

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Lissy - Your reply was very encouraging. I have retreated from many situations since I became ill. I know that it is not good for me but I fear that uncomfortable feeling that you talked about. I find that when I do get out and participate in life I generally feel better as long as I do not overdo. I fear needing to lie down when there is no place to lie down. Your method of densensitizing yourself is exactly what I would have recommended as a counselor, yet I find it difficult to do myself.

Again, thanks.

Lynne

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I definitely get uncomfortable now during any social events. It is mainly because I can't control where/how I sit or what the room temperature is. I can't be anywhere that is 75Fish, or I vasodilate and feel horribly lightheaded. So, spring/summer are out, as I don't know if the a/c is low enough somewhere, and winter is hard with people running their heaters. I could at least go places before this extreme heat intolerance set in as a part of my POTS.

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Yes. It makes you think hard about what is "worth it" to go through the after effects. But this has gotten WAY easier for me over the years. I enourage you to keep going b/c your body might get used to it.

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I'm so glad you brought up this topic because I think like a lot of others here the ability to handle stress and subsequent social anxiety is an issue for me. I often avoid social environments whereas before becoming sick I used to do fine. I wasn't the life of the party or anything but was always able to enjoy myself in crowds.

I've been doing a lot of research with regards to neurotransmitter irregularities and I've become quite interested in dopamine deficiencies. From the research I've done I've learned that social anxiety disorder usually presents with low dopamine levels. It's also correlated with autonomic control, sleep disturbances, the ability to relax/feel pleasure, CFS, Fibromyalgia, etc.

There are plenty of sites out there, here's a simple one:

http://chronicfatigue.about.com/od/treatingfmscfs/a/dopamine.htm

I'm meeting with a doctor who specializes in neurotransmitter repletion this week so hopefully I'll get some answers.

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Radio, definitely let us know how your appointment goes. You mention dopamine, but I also know that low growth hormone can cause social anxiety. So, it's interesting that there are actual possible reasons(besides the stress of POTS) that could underlie some people's problems.

I tell you, because of learning all this with POTS, I think back over people I've known throughout my life and realize how much our personalities are affected by the inner workings of our body.

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Since developing POTS, I've become a better listener during social situations. This works to my favor because it takes less energy and people really like to have someone to talk to! :P Also, I go to small events mostly with friends and family who understand and support me. If it's a larger event, I often just stay for the most important part if I suspect getting tired quickly. Sometimes I also bring my seat cane to these events (like my hubby's work Christmas party where there may not be much seating).

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If it had to do with dopamine it would be too much rather than not enough - since postural dopamine can be sometimes slightly increased in POTS.

There is no reputable evidence that low cerebral dopamine has anything to do with POTS or OI.

It has a lot to do with cerebral hypoperfusion and increased sympathetic sensitisation.

It might not work for you but in those situations (like sitting around a 20 person round table at a busy, neon-lit, jam-packed restaurant with all your directors from work when you hve to keep it together) - I find a beer helps me. Enables me to concentrate. Im not talking a lot - just one or two. There was a blog by another guy on this recently. But you have to be the type that tolerates alcohol rather than it making you worse.

This symptom is probablyh the least acknowledged by doctors. When ive spoken to a few they doubt it, suggest its panic disorder or something along those lines. For me I think its actually all the movement everywhere makes it harder for me to subconsciously concentrate on firm visual ques in my environment to balance and a large part of it is definately overstimulation. Otherwise a light beer would make it worse rather than improve it.

beta blockers also help this symptom but adversely effect blood pressure.

One thing Ive always done with POTs is try and force myself to do the very things that bring on symptoms. Seems to recalibrate a little over time.

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Thanks, and i find having a drink to be beneficial also. It's calming enough - so long as I don't get dehydrated.

I'm not sure I agree with a high dopamine level being related to POTS. In fact Vanderbilt is enlisting for a study now to administer carbidopa which is a Parkinson's drug used to increase plasma dopamine levels. The reason there is no evidence of a correlation is because it hasn't been measured properly. Urine tests are not accurate. In fact many parkinson's patients aren't measured because it requires a spinal tap. Dopamine is very difficult to measure. I know norepinephrine levels can be elevated in those with hyper pots upon standing but wasn't aware that dopamine was also elevated (i'll need to look into this more).

Also, alcohol works because of its effects on neurotransmitters. Specifically Serotonin, GABA and Dopamine.

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  • 9 years later...

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