OI is getting worse - what meds can help ?

I did a table tilt test a while ago and it showed that I had neurally mediated hypotension (NMH). It was mild when the test was done a few years ago, but it’s getting worse and worse. Today I ran an errand and had to have the clerk escort me back to my car. I was about 5 minutes in the store but was ready to faint.

I currently have the flu so it is probably making things worse. Nonetheless, I am afraid if this continues I will not be able to go out of the house anymore. I live alone, so this would be a big problem for me.

What meds should I be looking into? What is the most popular one and is it possible to only take it on certain days, when I am really bad ?

I see my doctor in about 2 weeks and hopefully she can prescribe something. She is the very cautious type and refuses to prescribe anything « out-of-the-box ».

Any tip will be very much appreciated.

 

Have you considered David Systrom's work @Dechi ?

Transcript and video link to the interview with Llewellyn King.

 

I have never heard of him @brf . Thank you, I will look at the infos you posted.

 

From the expert clinicians summit in Salt Lake City earlier this year (bolding mine):

Here's the CDC section on OI. The CDC is, as usual, very nonspecific on medications.

 

I’ve looked in to it and it would be my dream to get treated at his clinic ! Everything he describes I have as a symptom. I would like to try Mestinon too. I asked Dr Hyde last year but he said it was a very potent drug and did not recommend I take it.

 

There are tones of drugs and the type will depend on your symptoms (high or low BP)
you have vasoconstrictions drugs (or vasodilators for those who need it), florinef (volume add meds), beta blockers (for high heart rate), Calcium channel blockers, Ivabridine,....
Takes a bit to get the right combo, but well worth it.

 

Indeed. I recently spoke with a family doc who was frustrated when a fellow doctor refused to treat a ME/CFS patient's orthostatic intolerance (recommending instead GET/CBT). "We have plenty of treatments for OI" he said, or something to that effect.

 

Thank you @Seven and @Webdog My real concern is that so far, my doctor has refused everyone of my requests to try off label medication. She also knows nothing about ME. She tries to be helpful but really she doesn’t know what to do with me. :-(

Let’s hope she takes this issue seriously. It’s really terrible when you live alone and can’t move about anymore.

 

I was looking for evidence to give to my doc about Naltrexone and struck out, i saw it on your link, its ok but a search after sorting out my inability to log in to medscape came up with this, the best reference i have found, so i owe you one.

https://www.medscape.com/viewarticle/894020

I know how this feels, beyond the one i just mentioned i have also had trouble getting my doctor to understand whats going on with me, she was helpful in some ways but she also was giving me well meaning but bad advice and its hard to get things done when she wouldn't cooperate. The latest in my case was that she would not write a referral to get assessed for a scooter because i would deteriorate worse with it...

And i am also getting to the housebound or worse point, i already can't go out much anymore

I wonder if we need to get clinics for ME/CFS patients staffed with docs who keep up on the latest research and reject the CBT/GET lies.

 

@Alvin we definitely need ME/CFS clinics to start with. I’m sure if they also treated fibromyalgia they would have enough patients to justify the clinic.

I got an emergency appointment with a doctor two days ago, I went to ask for help with my dysautonomia syptoms. He didn’t know what orthostatic intolérance was. He didn’t know how to respond to my request so he focused on what he knew : treating a cold. So I got out of there with unblocked ear canals and nasonex for my sinuses...

It is sooo infuriating.

 

Perhaps we should open our own clinic, between forum members we know more then most doctors about this condition

That is infuriating. Is it worth hunting down a specialist who would be able to handle them?

 

@Alvin I’ve been trying to find a specialist for a while but haven’t had any luck. I’ve asked help from my current GP, we’ve sent a referral request to a fibro clinic (I figure they might want to prescribe off label drugs for me) and had no response. I will ask her again for a dysautonomia specialist when I see her.

It really is a shitty illness to have !

Oh, and I’m sure we would do a much better job if we opened a clinic !

 

If all the proposed clinic did was teach pacing, it would be better care than most patients receive in the US.

 

I have mild OI, but it's under control with lots of water, which I always add Celtic salt to, and magnesium and potassium supplements.

Electromix is a really good electrolyte powder that you mix with water. It has more potassium than many other electrolyte drinks.

 

No response
Try calling the clinic yourself and asking the secretary, i've sometimes had to do this to get the gears turning.

Yes it is

I would open a clinic myself (with crummy hours) but i suspect that would not be legally allowed. Plus not being an MD i can't write a script for any drugs...

 

Can you ask for a referral to an electrophysiologist (they treat OI).

 

I’ve never heard of that profession. Do we even have those in Canada? I will look it up, thanks !

I’ve checked and they seem to be technicians who do the radiologies. They don’t see patients, at least in my area.

 

@Dechi They are cardiologists who specialize in heart rhythm issues (vs. other types of cardiac issues). So (for example) if you were having tachycardia, or any type of heart rhythm disturbance, they could run tests to see if your heart is staying in sinus rhythm vs. having an arrhythmia. Some are knowledgeable about POTS, OI, and Dysautonomia and others are not (in my experience).