Jesse2233
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@Jesse2233 Does phenylephrine give you tachycardia?
Don't think so, it's supposed to have the opposite effect by raising blood pressure
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Jesse2233 Does phenylephrine give you tachycardia?
What would be the best location to apply it transdermally?
My concern with the list of meds you mentioned is that they might raise my blood pressure further.
The other concern is the effect any of the meds might have on mitochondria.
Thanks, I will.Hey Learner, I think your concern about blood pressure is valid since these are vasoconstrictors. I'm not sure about mitochondrial effect, but if you find something out about this please let me know
at a separate time) an OTC A1 antagonist
Doctors are really adamant I can't take these decongestant drugs, usually containing pseudo-ephedrine, even when I'm very congested (because I take beta blockers).Had a decent day today on the phenylephrine.
What are readily available A1 antagonists?
Jenny, that wasn't understanding, too, (that all forms of pseudoephedrine can cause tachy and not to take w/a beta blocker and bad for POTS).
Have you heard that before, Jesse, or is the med you took not one that contains Epi and I am confused? Thanks!
I'm not sure to be honest, but I'd trust what your doctor says / your experience before listening to me
Took 5mg of Midodrine today and felt a strong positive effect.
these were my vitals.
Maybe there's something to this CellTrend stuff
realized what I wrote in post last night might not have even made sense. I was trying to figure out if the med that you tried (phenylephrine) is like Sudafed or Pseudoephedrine or something totally different? If similar, than I know it is something that I am supposed to avoid b/c it triggers tachy, insomnia and agitation for me. Whereas, Midodrine makes me feel very calm and lowers my HR.
That is great news!
Is your HR always so low (47) or was that from the Midodrine? I have the exact same Omron BP machine as you except I have never seen my HR go that go (usually in the 60's at rest w/Atenolol) and I've never had my systolic BP go up to 127.
I absolutely believe there is and they are on to something. I am baffled though why they are able to test for autoantibodies in Germany that cannot be tested in the U.S.!
Yes phenylephrine is the active ingredient in OTC Sudafed-PE which I took yesterday to little effect.
Very interesting that phenylephrine gives you the bad side effects whereas midodrine helps!
I'm going to try a dose of 7.5mg tomorrow
My rest HR is around 45 (it's always been that) but since illness onset goes up to around 80 on standing.
Yes I agree. I think it should be standard practice to give everyone the CellTrend POTS/CFS autoantibody panel at illness onset and if the ABs show up immeadiately treat with plasmapheresis, IVIG, and the appropriate receptor agonists
Keep me posted what happens. I have tried 4-5 different doses of Midodrine since 2014 (lowest was 1.25 mg and highest was 10 mg) and at present, I take 2.5 mg 2-3x per day.
Wow, you have a very low HR. Were you an athlete prior to getting sick? The raise in HR upon standing would definitely qualify as POTS but the total HR of 80 is still quite low. Did you ever have episodes of your HR going into the 160's or higher? I do not have them any more but did for several years and they were torture.
I think it is very unlikely that any U.S. doctors are going to do plasmapheresis. I was able to get IVIG and Ritux approved but could not find a single doctor who would even consider allowing me to try plasmapheresis.
What happened when you went to 10mg?
Wasn't an athlete per se but I did a lot of yoga / meditation and went to the gym. But even during periods where I was relatively sedentary my HR was always low, not sure why as my parents have always had much higher resting HR
I know 80 is relatively low but for me I get light headedness, brain fog, dizziness, leg weakness, fatigue and anxiety with the increase. I'm convinced that there's more to the symptomatic affect of OI than can be correlated with HR / BP.
In the first day of onset and weeks after my HR went up as high as 120 which was truly a nightmare but fortunately also led me to quickly to figure out what I had in part
Yea it's too bad. I think plasmapheresis is probably the safest autoimmune treatment when it comes to the "big guns" and the quickest acting
I was sitting in the same position both times. So midodrine doesn't seem to be raising my blood pressure :thumbdown: Even at 2.5mg I feel like I get side effects (nocebo?).
BTW the 'before' is relatively high for me, it's not particularly unusual for me to be 80s or 90s over 50s or 60s.
Hey Jenny,
Here's a list of A1 antagonists:
- Doxazosin (Cardura) - Hypertension and benign prostatic hyperplasia (BPH)
- Silodosin (Rapaflo) - Benign prostatic hyperplasia
- Prazosin (Minipress) - Hypertension and nightmares
- Tamsulosin (Flomax) - Benign prostatic hyperplasia
- Alfuzosin (Uroxatral) - Benign prostatic hyperplasia
The effect of taking doxazosin was so severe that it seemed to targeting 'something'.......which must be the alpha adrenergic receptors given its mode of action............that is malfunctioning in this illness.
Horrible! So sorry you had that experience with doxazosin not to mention the hospital. I'm glad you survived and I can't believe they would say that to you!
Have you ever benefited from an alpha agonist?
1) Anti a-1 adrenergic: 22.6 (top of range 7.0)
2) Anti a-2 adrenergic: Negative
3) Anti B-1 adrenergic: 30.4 (top of range 15.0)
4) Anti B-2 adrenergic: 37.5 (top of range 14.0)
5) Anti Muscarinic/Cholinergic R1: 13.0 (top of range 9.0)
6) Anti Muscarinic/Cholinergic R2: 9.6 (top of range 9.0- so this one very slight)
7) Anti Muscarinic/Cholinergic R3: 24.1 (top of range 10.0)
8) Anti Muscarinic/Cholinergic R4: 27.0 (top of range 7.0)
9) Anti Muscarinic/Cholinergic R5: Negative
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