Dr. Says To Continue Midodrine Despite Heart Attack Sensation And S.o.b. And Emotional Lability, Etc.

[hyperpots]

Trying to figure out how I"m suppose to do this.

I can only get him by email. I typed a bunch of stuff like I was getting flu like symptoms on it as well. I'm dosing 2.5mg 2 x day now. The Shortness of breath hits almost immediately after taking the a.m. dose

I am freezing cold and Nauseated too. The crying is ridiculous and I feel I have no control over it. I call it being tortured now daily with these symptoms. He says continue for a week and we will re-evaluate in his email.

When I asked if any of this is normal, his reply was simply, "Yes".

Again, not sure how I'm gonna do this.. I'm as tough as nails and some wimp, so when I complain, you know it bad if you know me.

Steven

[lieze]

Do you get a feeling that your chest gets really tight with the shortness of breath?

I get this with meds and I'm not sure if it's the medication itself or the fillers?

I just don't know what it is I'm wondering if it's the same sensation....

[hyperpots]

Lieze,

Yes I do get this in the chest, but also in the stomach. If I take Xanax or the like, I get sedated in the head, but it does NOTHING for the Anxiety or Breathing Stuff.. I think the crying stuff come on b/c I am just so uncomfortable.

These are not acute attacks. They last all day. I have also had these in the past off of the Midodrine when I was on Antibiotics to treat my Lyme. Makes me wonder what is what. With the Antibiotics, I'm killing bad bacteria and the so called "Toxins" I'm told are causing the terrible Anxiety.

With the Autonomic Dysfunction, it would have to be the Drug itself.

When I get these symptoms and not treating anything, it's usually the result of stress, which can be something like being short on funds.

I really need to get this under control.

I don't know how else I can communicate this to my Dr. than what I've already told him and balled my eyes out to him to help me.

He apparently thinks in the long run, the Midodrine will help me and those that have bailed from the drug, didn't give it a chance b/c of the bad side effects.

Again, I'm lost and only guessing. I do know that my quality of life has dropped to Zero

Steven

[lieze]

The Xanax makes me more alert and functional-weird.

Okay I get this shortness of breath just out of the blue, with exertion, and in the shower due to the steam and I've also been told it's anxiety and it usually takes me a good 20-30 minutes to recover.

I also get a sensation that my diaphragm is paralyzed and that I have to mechanically breathe.

I had to monitor any laughter at all or I would feel like the wind was knocked out of me and talking too much would do this too.

[sue1234]

I have that same problem, Leize! I never really think to mention it, because it has just been normal for me. I also have to not laugh hardly at all or I am very short of breath. Same for talking too much or reading out loud. I am so used to having my rather talkative husband in the mix with other people around, so that way I can kind of shy away from having to "entertain" and talk very much. It just ends up leaving me breathless. I totally get what you are saying.

[janiedelite]

Does this doctor have any alternative treatments for you, other than midodrine and mestinon? Personally, I had reactions like you describe to both of those medications. There are lots of other meds to try. If he only is comfortable treating with those two meds, I may start looking for a doctor who is more willing to try other treatments.

[issie]

Hyperpots,

Have you read info on the fact that some of us HyperPOTS people have constricted vessels and not lax ones? Look at the info about NO (nitric oxide). Do a search on this site. Lots of conversations about it. Some of us have to be treated the EXACT opposite of the majority of POTS patients with OI.

Issie