Question for the Guys about Cialis use...

[ArgyrosfeniX]

Hi Guys,

This past month I was able to obtain a script for Cialis due to some ED issues I've been having for several months (at my wife's urging). I've had 3 doses now of the 5mg variety and have been rather surprised by some of the unintended side effects (outside of the normal reasons for taking it).

After the first dose, I had a reduction in my overall ME/CFS symptoms for about 4-5 days. Was surprised by this as I've been having a fairly steady decline the past several months. After those 4-5 days however, I crashed pretty hard without warning over a period of a few hours.

Not sure if the above scenario was related to the medication or not, I tried the Cialis again a few weeks later after I had recovered.

I had a similar period of reduction in my symptoms that lasted 3 days before I started feeling like I was cresting and starting back down again (hard), so I immediately took another to see what would happen. That apparent beginning of a crash appeared to be mitigated and I climbed back into the "better than my norm" range. Thankfully, things worked out where 3 days later when that one wore off, it was a weekend where I could just rest and not exacerbate the return to increased symptoms. I was able to level out after that and haven't taken another dose since then.

Has anyone else had something similar or some other reaction to the Cialis?

I've been trying to research it some in the forums here and have found some posts about how NO might be good for ME/CFSers, but the Cialis doesn't reportedly increase the levels of NO, it just interacts with what the body already has on board.

Anyone have any idea might might be going on?

If this were to be a consistent result of my taking this drug, I might have to purchase stock in the company that makes it!

 

[MDL]

Hydrogen Sulfide is an important vasodilator...

Hi ArgyrosfeniX (Arginine reactive oxygen species..?)
My belief is that hydrogen sulfide will prove to be illuminating in its underlying role as a mechanism of this disease. Please see:http://www.ncbi.nlm.nih.gov/pubmed/22016355
All best,
Marian

 

[heapsreal]

Hi Guys,

This past month I was able to obtain a script for Cialis due to some ED issues I've been having for several months (at my wife's urging). I've had 3 doses now of the 5mg variety and have been rather surprised by some of the unintended side effects (outside of the normal reasons for taking it).

After the first dose, I had a reduction in my overall ME/CFS symptoms for about 4-5 days. Was surprised by this as I've been having a fairly steady decline the past several months. After those 4-5 days however, I crashed pretty hard without warning over a period of a few hours.

Not sure if the above scenario was related to the medication or not, I tried the Cialis again a few weeks later after I had recovered.

I had a similar period of reduction in my symptoms that lasted 3 days before I started feeling like I was cresting and starting back down again (hard), so I immediately took another to see what would happen. That apparent beginning of a crash appeared to be mitigated and I climbed back into the "better than my norm" range. Thankfully, things worked out where 3 days later when that one wore off, it was a weekend where I could just rest and not exacerbate the return to increased symptoms. I was able to level out after that and haven't taken another dose since then.

Has anyone else had something similar or some other reaction to the Cialis?

I've been trying to research it some in the forums here and have found some posts about how NO might be good for ME/CFSers, but the Cialis doesn't reportedly increase the levels of NO, it just interacts with what the body already has on board.

Anyone have any idea might might be going on?

If this were to be a consistent result of my taking this drug, I might have to purchase stock in the company that makes it!

A few things that could be helping., Its main action is to dilate blood vessels, this has an effect of lowering blood pressure, so u may have hyertensive/hyperadrenergic POTS. SO lowering the blood pressure is then going to help increase brain perfusion. As a bonus u cant roll out of bed, lol. Something i am looking into and others have tried is clondine which is used for high BP and also lowers our adrenergic response, some find it improves sleep. I have tried small doses of viagra which has helped brain fog, but hasnt been consistant.

Are u a tired but wired person or a tied and sleepy person???

 

[mellster]

I think it is similar to Viagra which increases nitric oxide which increases blood flow and lower BP. Its use has been pondered before by medical professionals as a supplement for certain conditions.

 

[ArgyrosfeniX]

First off: MDL / Marian Back in college some 20 years ago, I decided to create a "handle" for my online persona. I chose to do it by using 2 different languages and mashing them together. I ended up with Greek and Swedish -> "Argyros" which I believed at the time meant "silver" in Greek, and "Fenix" which I know means "phoenix" in Swedish. Hence, "Silver Phoenix"...

Thanks for the link, btw. I'll follow it as soon as I complete this reply.

---------------------------

Considering the responses I've had so far, I feel that I need to add a bit of background on myself that I hadn't anticipated being part of this puzzle.

I was hospitalized back in April of this year (2011) for a chest pain rule out after having a near-syncopal episode at home. During the follow up with the cardiologist, I had a tilt table test and was diagnosed with some mild POTS (was borderline for results). I have been taking fludrocortisone (Florinef) since May.

I had an episode a few months ago when I tried going off the Florinef (lasted a month) where I walked up the stairs and started having air hunger again, immediately took my blood pressure which was in the 180s systolic range. I continued to take it while standing up for about 4 minutes until it dropped into the 140s systolic. Then proceeded to lie down and continue checking the pressures. I got as low as 86 systolic before coming back up again slowly... I saying this, it is in support of the idea that POTS has more to do with BP regulation (both up and down) than with just surges in one direction or the other. Also requiring postural changes, of course.

------------------------

heapsreal:
I find that I'm a tired person that fluctuates between wired and sleepy depending on how much sleep I get. Usually about 6 hours a day is normal for me.


Thanks everyone for their responses!

 

[richvank]

Hi, Argyro.

Given that you have POTS and that Florinef helps you somewhat, it seems clear that you have low total blood volume. This is common in ME/CFS, as shown by the work of the late Dr. Streeten and Dr. David Bell. Others have found that it is due to low secretion of antidiuretic hormone by the hypothalamus/pituitary, which produces diabetes insipidus (not to be confused with diabetes mellitus).

According to my hypothesis, this is caused by glutathione depletion in the hypothalamus/pituitary, and this, as well as the other symptoms of ME/CFS, can be corrected by lifting the partial block in the methylation cycle, which causes glutathione to come back up automatically.

This is explained in detail in a seminar I presented last month in Sweden. A video and the slides from the seminar are available here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Best regards,

Rich

 

[ArgyrosfeniX]

Hi, Argyro.

Given that you have POTS and that Florinef helps you somewhat, it seems clear that you have low total blood volume. This is common in ME/CFS, as shown by the work of the late Dr. Streeten and Dr. David Bell. Others have found that it is due to low secretion of antidiuretic hormone by the hypothalamus/pituitary, which produces diabetes insipidus (not to be confused with diabetes mellitus).

According to my hypothesis, this is caused by glutathione depletion in the hypothalamus/pituitary, and this, as well as the other symptoms of ME/CFS, can be corrected by lifting the partial block in the methylation cycle, which causes glutathione to come back up automatically.

This is explained in detail in a seminar I presented last month in Sweden. A video and the slides from the seminar are available here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Best regards,

Rich

Hi Rich and thanks for your reply!

Just wondering how all of the information above would correspond to the Cialis question. I haven't had a chance to look at your link yet, so if the answer is in there, I'll get to it asap. One of the items that my cardiologist suggested that I do while taking the Florinef, is to continue drinking the Gatorade G2 (less sugar), so your comments about the low volume make sense.

In noting the seminar you gave, what are your credentials (without needing to view the video - for those that are just reading this thread)?

Thanks much!

Brent

 

[richvank]

Hi Rich and thanks for your reply!

Just wondering how all of the information above would correspond to the Cialis question. I haven't had a chance to look at your link yet, so if the answer is in there, I'll get to it asap. One of the items that my cardiologist suggested that I do while taking the Florinef, is to continue drinking the Gatorade G2 (less sugar), so your comments about the low volume make sense.

In noting the seminar you gave, what are your credentials (without needing to view the video - for those that are just reading this thread)?

Thanks much!

Brent

Hi, Argyro.

I'm not sure why the Cialis produced the effects for you that it did. Cialis, Viagra and Levitra are inhibitors of the phosphodiesterase enzymes. Phosphodiesterase-5 normally breaks down cyclic GMP in the penis and the lungs, which is a second messenger used by nitric oxide in those organs to relax smooth muscles and thus dilate blood vessels. These drugs do not impact nitric oxide itself. Rather, they make it more effective for dilating blood vessels.

It's puzzling to me that one of these drugs gave you benefits when it appears that you have low blood volume. It would seem to me that this would make POTS even worse. So I don't understand this.

Credentials? Well, I'm an ME/CFS researcher, and have been studying it for over 15 years now. I have a Ph.D. degree, but it is in engineering and the physical sciences, not the biological sciences. I'm a member of the IACFS/ME, and have been for a long time. I've attended 6 of their conferences, and have presented poster papers at four of them. I've attended three NIH workshops on ME/CFS. I was a subscriber to the Journal of CFS for several years, until it went out of business. I wrote the nutrition chapter in the Handbook of CFS, published in 2003. I'm the proponent of the Glutathione Depletion--Methylation Cycle Block hypothesis for ME/CFS, developed in 2007, and coauthored a treatment study of a protocol based on it with Dr. Neil Nathan, M.D., reported to the IACFS/ME in 2009, and published in this month's issue of the Townsend Letter.

I hope you will take a look at the video.

Best regards,

Rich

 

[Valentijn]

Given that you have POTS and that Florinef helps you somewhat, it seems clear that you have low total blood volume. This is common in ME/CFS, as shown by the work of the late Dr. Streeten and Dr. David Bell. Others have found that it is due to low secretion of antidiuretic hormone by the hypothalamus/pituitary, which produces diabetes insipidus (not to be confused with diabetes mellitus).

I was wondering if low levels of albumin could also be contributing to low blood volume. It's another substance that relies heavily on cysteine, and from what I've read it sounds like having too little of it can result in less fluid in the blood stream, and that fluid moves into extracellular tissues.

Unfortunately there doesn't seem to be much (any?) ME research into ADH or albumin levels in patients.

 

[richvank]

I was wondering if low levels of albumin could also be contributing to low blood volume. It's another substance that relies heavily on cysteine, and from what I've read it sounds like having too little of it can result in less fluid in the blood stream, and that fluid moves into extracellular tissues.

Unfortunately there doesn't seem to be much (any?) ME research into ADH or albumin levels in patients.

Hi, Valentijn.

I think that low albumin production is a possible cause of low total blood volume in general, because albumin provides the main contribution to the osmotic potential in blood.
Albumin is made by the liver. In order for it to become depleted, I think there must be a protein deficiency status, leading to low amino acids levels in the blood. This can be detected with a plasma amino acids panel. I have seen some cases of low protein status in ME/CFS, but more commonly, I think the low blood volume is caused by low ADH secretion in this disorder. Dr. Shoemaker routinely measures ADH in his patients, and finds it to be low.

It's true that there isn't much research on this. I have heard from a small number of people who tried the methylation treatment and found that it corrected the high urine output and the constant thirst.

Best regards,

Rich