Coenzyme Q-10

[Merrill]

Does anyone take this supplement (also called Co Q-10)? It came highly recommended by a family member, who swears it works to boost the immune system and keep her (and others who've started taking it per her advice) very healthy. (That is, it put an end to the endless cycle of winter colds and flus and bronchitis etc.) She also reported increased energy and other benefits. I might give 'er a whirl; I just wondered whether anyone else had tried it.

[Michelle Sawicki]

I tried it, but I noticed a lot of chest pain while taking it. I stopped taking it and the chest pain stopped. When I tried taking it again the chest pain started again, so I stopped taking it once and for all. If I remember correctly, I read somewhere that beta blockers can decrease your Co Q-10 levels, and that was why I wanted to try it in the first place. I hope you have better luck with it than I did.

Michelle

[Jersey Girl]

I take 75 mg of CoQ 10 on a daily basis and think it helps with my energy level. I started with 50 mg daily for a few months before increasing the dose. My mother and sister also take it and they don't have POTS. Martha

[blackwolf]

I had the same effect as Michelle, chest pain.

Blackwolf

[Gena]

Great question...I've been wondering the same thing myself. I presently take 100 mg once or twice a day. I was wondering if it's good or bad for POTs symptoms. It works on the mitochondria of the cell to increase cellular energy and is supposed to be especially helpful for people with heart disease or other arrythmias. I have a book called The Doctor's Complete Guide to Vitamins and Minerals, and it says that CoQ10 "may help reduce the frequency of PVCs-- the early beats, extra beats or skipping of beats of the heart's ventricles." It says that if it's going to help, you should see improvement with fewer PVCs in 1-2 weeks of taking 50 - 100mg per day. HMMMMM, I just haven't figured out if it's helping me or making things worse.

Two other items of interest that the book lists under the subject of arrythmias... it says that a high saturated fat intake (above 10% of total caloric intake) can make your heart's electrical system more susceptible to the production of short-circuited signals. It also says food allergies and sensitivies may cause fluttering or skipping sensitivities in the heart.

[Merrill]

Gena, why do you think it could be making things worse? Have you been having an increase of symptoms lately? How long have you been on it?

And how did you decide how many milligrams to take?

I might try it--and if I have chest pain or other worse symptoms, stop ... it sounds so promising from everything I've heard/read ... not as a treatment for pots symptoms, but as a possible preventative measure for other sicknesses and things everybody's susceptible to.

[Gena]

The reason I said I wasn't sure if it was helping or hurting was b/c I had 2.5 months with very mild symptoms and then the last two weeks I've had a lot of arrythmias and tachycardia. Yesterday was my first day of decent sleep and normal heart rate in 2 weeks. I had been taking CoQ10 during my 2 months of "mild symptoms", but then ran out for a short bit and recently started back on it. I dont' recall if I started back on it before I started crashing or just within the last week of my crash. Brain Fog. Anyway...Here's an excerpt of one of a trillion articles that I found when researching the internet on coQ10....

Coenzyme Q10 has also proven useful in the treatment of various cardiomyopathies (diseases of the heart muscle that reduces its pumping capacity). Studies have shown that supplementation with as little as 100 mg/day for 12 months results in better pumping capacity (increased ejection fraction), increased muscle strength and improved breathing.

Several studies indicate that CoQ10 may be beneficial in the treatment of hypertension (high blood pressure). A study of 109 patients with long-standing, essential hypertension, who were on antihypertensive drugs, concluded that supplementation with an average of 225 mg/day of CoQ10 improved functional status, allowed about half the patients to discontinue most of their blood pressure medications and resulted in an average decrease of systolic blood pressure from 159 to 147 mm Hg and a diastolic pressure decrease from 94 to 85 mm Hg. Smaller, more recent Japanese studies have confirmed these findings.

Studies at the University of Ancona in Italy have provided evidence that CoQ10 supplementation reduces blood levels of epinephrine (adrenalin) and other catecholamines; this is believed to be partly responsible for the drop in blood pressure and may also explain why CoQ10 is effective in reducing the incidence of certain types of arrhythmias.

Boosts energy and brain power

Coenzyme Q10 is a great boost to heart health, but it has many other beneficial effects. Strenuous physical exercise reduces blood levels of CoQ10 and supplementation with 60 mg/day has been found to improve athletic performance. Administration of CoQ10 alone or in combination with vitamin B6 (pyridoxine) boosts the immune system and may be useful in the treatment of AIDS and other infectious diseases. An adequate level of CoQ10 in the body is essential to proper muscle functioning and several studies have indeed shown that supplementation with 100-150 mg/day of CoQ10 markedly improves the condition of people suffering from muscular dystrophy.

[Merrill]

That's interesting, Gena, thanks for sharing that article. I too had read that it's first use was with cardiac patients & hypertensives--and that others are now finding it beneficial (except for those w/increased chest pain! ) I wonder whether it could have a negative effect for those with low bp. I came home to a phone message from that cardiology fellow with whom I talked the morning after my Crazy Night earlier this week. I can only think he was checking up on me! Very cool... If I talk to him today, I'll try to remember to ask him this question and I'll post again.

Thanks,

m

[mindylee1]

merril,

Dr. Stillman(cleveland Clinic) recently started me on Co Q10 150mg a day. and Vit B2 400mg a day. It's been about 2 wks now and I have felt worse. Rapid heart rate, anxiety...really bad at night. I have hears great things about it as well..but so far just getting worse. It's so hard for us to tell what does what to us with all the med we take. I am up to 25 pills a day... how crazy!! Sometimes I wonder why I take them when it seems as if nothing helps. Have you ever had any experience with Ritalin?? I've read some good things about it and considering asking him about it

best of luck to you

Mindy

[Merrill]

Mindy, is Co Q-10 the only new thing you're taking? If so, maybe you should call Stillman back and tell him what's happening ... maybe go on a lower dosage or it or go off of it altogether to see if you feel any better?

Yes, that's a lot of pills! Gosh--it would be hard to figure out what might be having which side effects!

I have no experience with ritalin, tho others may--hopefully you'll hear from them. Hope you feel better soon,

m

[Merrill]

I just talked to the doctor--he said the research is currently inconclusive on CoQ10 ... but he also said that if people tell him they want to try it to go ahead--it certainly can't hurt, he said; it may not help, but it can't hurt either. (I did tell him that a couple people on the pots forum said they had chest pain and stopped it, however.) He looked up the dosage on his computer while we talked, and he told me the dose should be 100 mg a day divided, so 50 morning and 50 evening. (This falls into or near the category of alternative medicine .)

He wants me to keep my Jan. appt w/my regular cardiologist and also referred me to an electrophysiologist with whom he's working for continued care. The electrophysiologist sees more cases like mine, so that'll be a good thing.

Here's a weird thing--I probably should post on separate string ... but I asked him whether an adrenaline surge would cause an increase in gut activity. (I can track several incidents of runs or perhaps slightly less dramatic bms following or during a panicky episode.) He said no--that during flight-or-flight response the opposite would happen (if you were being attacked, the last thing you'd want to do is stop and go to the bathroom ... makes sense to me, actually) but that after the danger passed and levels returned to normal, you'd be more likely to have to go. Does that make sense to folks--or are we dysautonomic folks opposite of the rest of the world when it comes to stuff like this!?

[Michelle Sawicki]

Hi Merrill,

I have read that this can happen in the case of mast-cell activation disorders. This is what we have on the website regarding them:

Mast-cell activation disorders may play a role in the development of POTS in some individuals. Some patients with orthostatic intolerance suffer from episodes of flushing, palpitations, shortness of breath, chest discomfort, headache, lightheadedness, hypotension or hypertension and occasionally syncope (Jacob & Biaggioni, 1999). These patients may complain of increased fatigue, sleepiness, increased urination and/or diarrhea after an attack. Symptoms of orthostatic intolerance often worsen after an episode. An increase in urinary methylhistamine, a marker of mast-cell activation, can be found in these patients. Mast-cell activation results in the release of the vasodilator histamine, which may contribute to symptoms of POTS.

Michelle

[Guest Mary from OH]

Cleveland Clinic has also done research showing that CoQ10 helps migraines! I used to take it for my migraines. I didn't really notice that much of a difference, so I stopped taking it. But, I do know that you should take the soft gel capsules because they are the most soluble and readily available to your body. The other preparations just go through your body without being absorbed. This has been well documented in many studies.

[DawnA]

My Neurologist just put me on the mitochondrial cocktail, I have not starting taking it yet. She put me on Q-10 200mg, carnator 330mg TiD, riboflavin and thiamin. That is a lot of Q-10, I hope I don't ract like others have!

According to those on the mitochontrial forum the best source of COQ-10 is from Tischon, any other is worthless. Many order it through the internet on Epic Health.

Maybe a better source of coQ-10 would work better for those who have had a hard time with it. Just a thought.

dawn

[DancingLight]

merrill,

i was going to say exactly what your cardiologis said...that the verdict is still out on CQ10. i'm glad that i was on the right track in saying that!

as for running to the potty and fight or flight....i have fight or flight feelings all the time pretty much. and i find that i always feel 'clogged' up and if i don't have down time or am too 'over-stimulated' (even watching tv) i cannot go to the BR. i am like a little old lady with my routines to try to go. often, i cannot go until i have taken off my hose, showered, taken clonidine, and then, taken my ambien. it takes that much for my system to relax. and if i have an evening that isn't low-key or something (i.e. the reuninon) there is no hope of movement for me!

i can't believe that i am sharing this, but hey you asked.

but, when i used to get anxious before POTS...i would definitely have the opposite reaction...the running to the potty thing. hmmmm....

if julie logs on...she has a great way of explaining gut motility in relation to the parasympathetic and sympathetic nervou system. i am going to leave it to her to explain, b/c she does it so well and i will mess it up!

for me, it's like i depend on the ambien to go. weird huh? i wonder if anyone else is like this...

hmmmm....

hope this doesn't get lost in this thread here.

guess what? i gotta go EAT some lunch!

later alligator!

emily

[michiganjan]

Merrill,

I have been taking two 30mg CoQ10 a day for several months now. At first I took it in gel caps and every time I would take a 30mg gel cap I would get some palpitations. I stopped it and then tried it again and once more I got palpitations.

Now I switched to a powered capsule form and I don't get the palpitations. However I haven't noticed that it does any good, either.

Michigan Jan

[beala]

I have always been interested in this CoQ10 since reading an article on brain fog.

http://home.tampabay.rr.com/lymecfs/brainfog.htm This Dr. says that CoQ10 helps brain fog and have always wanted my son to try it. Have any of you noticed that it helped with your brain fog? He also mentioned that Neurontin was helpful for brain fog also. Anyone try this ?

Laura