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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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not coping

sleepy237

Senior Member
Messages
246
Location
Hell
having a hard time perpetual dizziness/vertigo feel like im going to collapse been given a prescription for prochlorperazine but i have mcs and im scared to take it. i feel in constant danger and i dont know what to do any more please answer someone ....think im going to call an ambulance :(
 

serenity

Senior Member
Messages
571
Location
Austin
hi, i am so sorry, i have felt this way. my vertigo lasted for 3 weeks & got better just a bit every day. i do not know anything about your med, but you might want to try it - if nothing else is working? i dunno, but i just wanted to lend my support & sympathy.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
I am so sorry. I have had this off and on for years. I wish I could help you. Time will help, but if you want to try a medicine, maybe you could try a tiny bit first. A really good ginger drink could help once it gets a bit better.
 

Lisa

Senior Member
Messages
453
Location
Western Washington
Hi sleepy.

First, take a slow deep breath. It sounds like your body is in a flight/fight response right now. It happens to us all (especially with MCS).

So just focus some on your breath and take your mind to a happy place - mine's the beach, you're welcome to borrow it. :Retro smile:

Here is a link to what your doctor gave you to take: http://en.wikipedia.org/wiki/Prochlorperazine

Essentially it sounds like something to help with the vertigo and anxiety you are having right now.

Not knowing all the meds you take, I can't really say if you should take this or not.

From an MCS standpoint - I know it can be very scary to have a new drug with a crazy name that is almost impossible to pronounce.

Have you been alright tolerating stuff in the past? What problems do you have to medications? Is your doctor aware of these problems?

Breathe. Inhale slow and steady through the nose, exhale slow and steady through the mouth. In... out... In... out....

If you decide to take the medicine, you can always try a tiny bit first. Break the pill up and take a small crumb or open the capsule and take a little of that. If that goes well for the first hour then maybe try a little more. Wait a two or three hours and try some more. Just don't take more than the recommended dose in a 24 hour period.

Have you ever tried Rescue Remedy? Here's a link to the one I use: http://www.vitacost.com/Bach-Flower-Remedies-Rescue-Remedy-Kids

It is the kid's formula with glycerin instead of alcohol. There is also an alcohol based one if you can tolerate brandy. (I can't tolerate any alcohol) This stuff is awesome for anxiety.

Have you ever tried GABA before? If not, don't try it now. But if you have and can tolerate it, you may likely find some relief from that. It really helps my anxiety calm down, especially when I take it with some Vitamin C.

Breathe, sleepy. Listen to something calming. Watch some favorite movie or some mindless tv if you can. Do some gentle stretching with slow breathing if you are capable. Sit under a hot shower for a while. Anything at all that will help you to calm your nervous system down.

Let us know how you're doing. Calm hugs, Lisa :Retro smile:
 

sleepy237

Senior Member
Messages
246
Location
Hell
Doing a little bit better today. Dentist made me relapse bad but I do have to go back. Not fully accepted my illness with all its symptoms yet, hope I reach acceptance sooner rather than later. Hugs and big thank yous for replying and supporting me.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Doing a little bit better today. Dentist made me relapse bad but I do have to go back. Not fully accepted my illness with all its symptoms yet, hope I reach acceptance sooner rather than later. Hugs and big thank yous for replying and supporting me.

Yes, this is a big part of this damn disease!
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
I want to second Lisa's recommendation about distracting yourself and calming down. For me, it's become standard proceedure to watch an engaging movie or TV show if I think I might be reaction to something but am not sure, or if I've just taken something new and I want to gauge my reaction to it. My reason for doing this is to completely take my mind off it so that if a symptom is bad enough to cause me to recognize it I can be certain that it wasn't brought on by a hyperattentive emotional state.

Having severe MCS and knowing what tricks our emotions can play on us, I find that in order to properly manage my CFS I have to "outwit" my emotions so to speak on order to get an accurate read on what I'm reacting to. Taking a hot shower, as Lisa suggested, for me is like hitting the "reset" button on both chemical reactions and hyperattentive emotions, and has been a very helpful tool in my arsenal. I also try to test things multiple times, usually with several days to a week inbetween testings, to make sure it's accurate. The same symptom every time is accurate...inconsistent symptoms means it's something else. The second time of testing it will likely be more accurate than the first because you can be more emotionally prepared for what to expect. The key is to distract, distract, distract....if a symptom forces itself upon you, you'll know it. If it doesn't, or if you're not sure, you still got an enjoyable activity out of the deal. :)

If you're concerned that taking the pill is going to potentially make you pass out, stop breathing, or any other symptom that would require medical attention, then a good distraction tool is to spend the first hour or two of taking it talking with a friend either over hte phone or in person (online won't work for this). Let them know that if you suddenly stop talkign or appear paniced that they should call 911, but that probably won't happen. Then just have an enjoyable, goofy, long conversation. You can relax because you'll know if something happens you'll be taken care of, and it'll take your mind off it in the meantime.

As Lisa said, make sure you start with as small an amount as possible. For me, even after having severe, life-threatening MCS for several years, the only time I've had severe reactions to medications has been either from taking a full dose of something bad, or from taking a smaller dose of something that I had previously reacted severely to. In my experience, a miniscule dose has not been the thing to cause severe problems; it's generally when I think that since a tiny dose is fine than more should be no problem that I run into trouble.

Also, again speaking as someone who has severe MCS, some days I'm just too emotionally involved to try anything or accurately test anything or evaluate reactions. My mind is racing on how I'm going to manage my life without ______ if indeed I do react or am reacting, I'm frustrated about the situation and I'm generally sleep-deprived enough for it to affect my clear-headedness. When that happens I just take the day or two or even the week off, because I just cannot afford to have my emotions influence whether or not I get well. Reactions are too severe and make me too ill to be wasted on times when my emotions might influence the results.

So I just wanted to encourage you...I know it's scary to be assulted with all these reactions, but with dilligence, hard work, and time it is possible to learn how to not let those emotions get in the way of your seeking treatment and testing MCS reactions.
 

sleepy237

Senior Member
Messages
246
Location
Hell
Thanks all and Dainty now I m havin difficulty with another medication this is never ending right now...hugs you alll
 

Stone

Senior Member
Messages
371
Location
NC
I will tell you, Sleepy, that there's one thing about our disease that is always a constant, and that is change. If you are feeling very bad, it will eventually change sooner or later. If you are feeling great, it will eventually change (at least that's how it is for me). It's one of the hardest things to get your mind and spirit around and come to peace with. It's also hard for normals to understand this too. Eventually you will learn what usually is okay for you and what usually isn't and how to cope with that. Over time, you will adapt more and you will develop coping mechanisms along with avoidance techniques that are pretty ingenious. Keep posting. Keep asking for support. Keep asking questions. There is invaluable wealth of information and experience here. Listen to your body and remember that no one thing works for everyone, but many things work for lots of us. You have friends here who have been there, and some who are there with you now. Remember also that not everyone is capable of posting (typing, sitting upright or whatever the case) but something you ask might be just the thing they need to know to help themselves, so do ask for help and suggestions and if you can, report back on your experience with things you try. It all goes toward expanding the information out there and weeding out what works and when and for whom. All the best to you.
 

Min

Guest
Messages
1,387
Location
UK
Glad you are a bit better.

I take betahistine for the symptoms you describe, and keep it in hand for when the vertigo etc commence to stop full blown attacks of labrynthitis.