Hi, everybody:

I think I want, if the Neuro Talk Support Group moderators allow it, to change my screen name to icycoldgirl because I am really, really sick and tired of this icy cold feeling running through my veins and arteries. As time goes by, it is getting more and more difficult to live with this feeling. I feel sooo sad and desperate, especially when I have this icy cold feeling. I do not know if you will believe me, but I feel I need to tell you that I also have vasospasms (is this their name?) in the center of my body, right between my two breasts. I did not think this was possible or I must be crazy. The feeling (vasospasms?) I have in the center of my body is much, much worse than my icy cold feeling. It feels like insects are running inside the veins and arteries of the center of my body. It literally drives me crazy: I am lying on my bed in such a way, writhing as if to shake the insects off of my veins and arteries, which is of course impossible, because these are not real insects but just a feeling, a horrible feeling.

I was hoping Catapress (clonidine) patches would help fight this. If this medication does not help, then what will!? Aren’t there ANY medications for this icy cold feeling and for this insect feeling, which probably have the same cause(s) and treatment(s)? If there are no treatments, what will be left for me? Death? I cannot abandon my two-year-old baby boy but, on the other hand, I feel like this full body RSD really is preventing me from being the good mother I would like to be for my son.

Firegirl, I do not have high blood pressure and I do not have low blood pressure either. I would so much like to try Catapress, hoping it is the solution to the problems mentioned above, but I am also afraid Catapress will lower my blood pressure too much and I will pass out, for example from orthostatic hypotension.

I have no big problems with the adhesive of Duragesic (apart from bad itchiness sometimes), but Catapress might use a different adhesive, which my skin will not tolerate. I use tape on all four sides of all the medications that come in patch form because I do not want them to come off and get stuck on my boyfriend (Ha! Ha! A police officer! I imagine his reaction!) or worse, on my baby, whose body is much too small to stand this kind of medication without dying (Duragesic or Catapress). Of course, I could also use tape on all four sides of my Catapress patch to keep it from coming off.

Firegirl, how will Catapress help you if you use it only very temporarily? If I understand right, you are not using it for pain control, but for the control of the withdrawal symptoms from some other medication?

Nyt2, you said decreasing levels of norepinephrine would lower the activity of the sympathetic nervous system. I sure hope Catapress will help with the icy cold feeling and with the insect feeling (described in the first paragraph), if both these feelings are caused by an overactive sympathetic nervous system.

Quote: “If you use this medication as a patch and find it helpful, if you ever need an MRI you need to remove the patch for the test as the backing of the patch has metal in it.” Once removed, does the Catapress patch stick again or does a new patch have to be used? Is there not a way to shield or protect the Catapress patch from the MRI rays? I shielded my fentanyl patch (Duragesic) with something quite thick (lead?), which the radiologist gave me and which I put over the arm that was wearing the fentanyl patch. I was having a knee X-ray and a neck X-ray. I might have other knee MRIs, but the “shield system” used with the X-ray machine probably would not work with the MRI machine.

gramE, I tried the Voltaren gel, but it did not help much. All the doctors claimed it was because topical creams or gels do not penetrate deep enough inside the body to work. They claim Voltaren only helps in cases where the pain is near the skin surface.

The clonidine pills you took were for the treatment of hypertension, not for the treatment of anything related to RSD? Even if this were the case, your high blood pressure would sort of prevent you from passing out because of sudden low blood pressure caused by clonidine.

yiisd, did you have high blood pressure for the clonidine not to cause your blood pressure to drop to a point where you would pass out? If you have normal blood pressure, you are lucky you did not have to suffer from sudden orthostatic hypotension or other type of hypotension. I hope I will be as lucky as you and that these feelings of icy cold and of insects running through my veins and arteries will stop.

You say the dosage of clonidine taken orally can be adjusted easily. What about the clonidine patches? Do the doctors not have available to them the clonidine patches in different dosages, to be adjusted as needed, the same way fentanyl patches are available in different dosages for easier adjustment to the patient’s needs?

Thank you all for the interesting information you gave me, which I will share with my doctors.