OI is getting worse - what meds can help ?

Dechi

Dechi

Senior Member (Voting Rights)
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.
 
From the expert clinicians summit in Salt Lake City earlier this year (bolding mine):
Medscape said:
There is currently no US Food and Drug Administration-approved drug for ME/CFS, so treatments need to be individualized and directed toward the patient's most troubling illness manifestations and symptoms.

Medications that were endorsed by a majority of the panel include low-dose naltrexone for patients with pain and cognitive dysfunction, low-dose beta blockers or fludrocortisone for those exhibiting orthostatic intolerance, and intravenous Ig for patients with a variety of immune dysfunction indications including low IgG or IgA or recurrent infections.

https://www.medscape.com/viewarticle/893766#vp_2
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Here's the CDC section on OI. The CDC is, as usual, very nonspecific on medications.
CDC said:
Orthostatic Intolerance

Many patients with ME/CFS may also experience triggering or worsening of symptom when moving to and/or maintaining an upright posture. This is known as orthostatic intolerance. Symptoms of orthostatic intolerance can include frequent dizziness and light-headedness, palpitations, and feeling faint. Adolescents are particularly affected by this manifestation. Patients with symptoms of orthostatic intolerance can benefit from evaluation by a cardiologist and/or neurologist.

Strategies to address orthostatic problems include:
  • Avoiding factors that aggravate symptoms (hot environments, prolonged standing, inadequate salt and fluid intake)
  • Increasing salt and fluid intake for those patients with ME/CFS who do not have hypertension, renal failure, congestive heart failure, or other contraindications
  • Postural counter-maneuvers
  • Compression and cooling garments
If symptoms do not improve with these non-pharmacological measures, prescription medications for the management of POTS and NMH as well as prescription-strength support stockings can be helpful.

https://www.cdc.gov/me-cfs/healthca...-mecfs/treating-most-disruptive-symptoms.html
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brf said:
Have you considered David Systrom's work @Dechi ?

Transcript and video link to the interview with Llewellyn King.
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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.
 
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.
 
Webdog said:
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.
Click to expand...
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

Dechi said:
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.
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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.
 
Dechi said:
@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.
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Perhaps we should open our own clinic, between forum members we know more then most doctors about this condition :D

Dechi said:
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.
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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 !
 
Dechi said:
@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.
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No response :emoji_face_palm:
Try calling the clinic yourself and asking the secretary, i've sometimes had to do this to get the gears turning.

Dechi said:
It really is a shitty illness to have !
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Yes it is :(

Dechi said:
Oh, and I’m sure we would do a much better job if we opened a clinic !
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Webdog said:
If all the proposed clinic did was teach pacing, it would be better care than most patients receive in the US.
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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...
 
Seven said:
Can you ask for a referral to an electrophysiologist (they treat OI).
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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.
 
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Seven said:
Can you ask for a referral to an electrophysiologist (they treat OI).
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Dechi said:
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.
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@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).
 
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