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beta blockers and heart rate

Old Bones

Senior Member
Messages
808
The first beta blocker I tried was propanolol, but I'm allergic to that - it made me itch all over.

@Gingergrrl mentioned above that beta blockers aren't great for people with MCAS. I wonder if that's why the propranolol caused you to itch all over.

Is the dietary advice to take more salt and liquids, or the generic "Eat Right, Exercise More, Don't Smoke" advice that is the magic cure-all for most everything?

I suspect the dietary advice would be the typical "eat right" recommended for heart attack patients. I tried the "take more salt and liquids" advice for POTS. The "liquids" part I'm OK with. But, adding even a pinch of salt several times throughout the day caused fluid build-up in my right ear (Meniere's disease?) and auditory distortions so severe, I could hardly recognize my environment. Interestingly, I seem to be able to tolerate natural unrefined sea salt better than the typical table salt (sodium chloride) I was using in the past.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Though I use a beta blocker before a pilates class and it prevents the heart rate spikes that make exercise impossible, I don't use "the formula" when watching my HR monitor--I go by how I feel. So far this has worked in preventing PEM. The way I am seeing it, using the beta blocker only affects the HR spikes, not the HR level that I tolerate.

This is the same for me. In general I take 20 mg Propananol first thing in the morning before I get up (together with thyroid and adrenal meds) and if its a quiet day that is all I will need. However if I have to go to a meeting or function of some sort then I will take another 20 mg and that's it. I also find that if its hot then I might need an extra dose too but usually the maximum in those situations is just 2 doses.

It has enabled me to be fairly active, I regularly do 7000-8000 steps daily.

Pam
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
I have wondered whether perhaps, by causing a little more fatigue, even low doses of beta blockers might reduce our activity a little, and thus prevent our over-exerting ourselves? Or the calming effect might also reduce activity? We might have less 'false' energy caused by adrenaline or nordrenaline, so are just using 'healthy' energy - the energy we have in the bank - so not going overdrawn!

The 20 mg propananol has never given me fatigue. My GP originally gave it to me at a dose of 10 mg before full blown ME hit me. It might be to do with my genetics because I over produce adrenaline.

Pam
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
It has enabled me to be fairly active, I regularly do 7000-8000 steps daily.
That is great, Pam. We're not solving the cause, but in the meantime, this strategy might help those of us for whom HR spikes prevent activity, to do a bit more.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@Sushi Yes definitely the betablocker has been very helpful to me but to be able to be as active as I am I have to stay on some of the Cowden herbs for borrelia or I go downhill. I also use an oxygen concentrator for 30 minutes 3 times daily and this is also a big help (was diagnosed at Breakspear with very low oxygen in my cells via autonomic testing).

Pam
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl mentioned above that beta blockers aren't great for people with MCAS. I wonder if that's why the propranolol caused you to itch all over.

It's hard to say and someone could just have a regular old allergy to a med that has nothing to do with MCAS. I have never tried propranolol and have always been given the cardio selective beta blockers.
 

Gingergrrl

Senior Member
Messages
16,171
:(
It's rather frightening to me to think that a person can have such an acute, observable problem and the doctors have no idea what is wrong or how to treat it.

Thanks @jimells and I really appreciate the support. So far they are all in the dark but are fairly certain it is not a traditional cardiac problem. One doc thought it could be microvascular angina but we no longer think this is the case. At this point, it is either pulmonary, autonomic or both. I hope to find the answer some day, even if it cannot be fixed, just to have some peace of mind. Doctors are still in the dark ages in many ways as much as I hate to say it.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
I also use an oxygen concentrator for 30 minutes 3 times daily and this is also a big help (was diagnosed at Breakspear with very low oxygen in my cells via autonomic testing).
@bertiedog, Low oxygen in your cells, does that have any reflection on your actual oxygen saturation rate reading?

I'm interested in trying an oxygen concentrator to see if it has any impact on relieving my gastropareisis symptoms due to chronic intestinal ischemia. I was looking at trying hyperbaric chamber treatment but that's not possible with having a gastric pacemaker.

Gut ischemia creates a hypoxic g.i. environment but I have good oxygen saturation rates in general so was wondering if hypoxia-induced factor 1 (HIF-1) as the critical regulator for cellular oxygen balance is dysfunctional and would benefit from supplemental oxygen.

That would be a better option for me than a pharmacological solution as I am tolerating very little orally.

One wonders if tissue hypoxia causes some of the problems of neurological dysfunction in ME/CFS. It certainly has implications for cardiac function.
http://www.ncbi.nlm.nih.gov/pubmed/24038279
http://www.ncbi.nlm.nih.gov/pubmed/22800800
 
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bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Low oxygen in your cells, does that have any reflection on your actual oxygen saturation rate reading?

No actual oxygen saturation rate is not the problem, it's the cells where the issue is. Dr David Bell has written a small book about this in relation to CFS.

I find that the 5 litres per minute portable oxygen concentrator from EBay is as good as a large much more expensive machine. I think they are down to around £250 now here in the UK. It's the best thing I have done along with hormonal treatment.

Pam