Other HH symptoms?

PigSnack · Newbie User Joined: Mar 26, 2008 Posts: 3

I have severe compensatory truncal HH secondary to ETS surgery. In addition to anxiety I also feel like I'm suffering heat stroke... shutting down and ready to pass out sometimes. Does anyone else get these or other physical symptoms during HH?

Jezza · Posted: Mon Apr 07, 2008 1:13 pm Post subject:

Difficult to say really cause the actual sweating makes everything else look like minor stuff.

Still, I definitely get a dry mouth in stress situations (which for me, seems to be almost always, that is, in my mind it isn't but my body seems to think it is, and then of course it's impossible not to get stressed out from the symptoms). That's one thing that's for sure.

I also have a feverish sensation sometimes, usually after that the sweating kicks in like there is no tomorrow though.

When I go and play sports I have had some cases where my vision got blurry for a couple of seconds and/or where I saw some green spots floating around (really weird, I know, but I'm not making this stuff up and it happened more than once), with a brief loss of orientation.

Still, I never passed out after this and usually it dissappears shortly after it occurs and it could be just from exhaustion and loss of fluids (obviously).

Also, I living with HH it takes so much of your energy, focusing on your health that it is difficult to say if things are normal or related to HH, especially since so little is really known of the parameters of HH and the nervous system. I think that if I would not have HH, I would maybe still complain about the dry mouth but I don't think I would be to worried by other symptoms, since they don't really effect my life too much (unlike HH) and don't seem life threatening...But, in my experience, not being able to trust your own body makes it tough to dismiss minor complaints since you don't know what will happen next.

I didn't have ETS by the way, cause I was scared of by the bad stories. I went to a hospital some weeks ago and they proposed me undergoing ETS, while I have generalized HH and therefore CS would be a certainty, not to mention some other things. I'm sorry to hear it didn't work out for you either.

The medical system keeps on dissappointing...weeks before documents are transferred, months between appointments, even if they are limited by budget (welfare state, makes public care inadequate and private care unattainable and limited by too many rules) this is just not acceptable...

Ignorance...

PigSnack · Newbie User Joined: Mar 26, 2008 Posts: 3

My surgeon did offer to inject (phenol?) into the particular Sympathetic nerves he was gonna clamp as a way of a test. I felt this test wasn't accurately comparable to clamping and so I opted out of the pre-surgical testing. I also felt confident on the procedure being reversal able if it didn't work out. The results of the clamping were far worse that the original problem and the reversal surgery did nothing to help. I am screwed for life now... so yeah, reconsider the decision for ETS.

Pinker · Posted: Tue Apr 08, 2008 10:13 am Post subject:

I usually have freezing cold hands and feet (I havent had ETS either) and my hands and lower legs sometimes ache because of it. Sometimes I feel a bit dizzy when I go from place to place with different temperature, or different lighting.