I took Nitroglycerin tonight and it helped! What does this mean?

[Sidereal]

One thing it does seem to do is boost my mood. Almost immediately. I am almost never depressed or down, but for a while after taking the nitro I am cheerful. This has happened twice now. Is it boosting brain function?

I get this instant cheerfulness from beet. I wonder if it's an effect of improved brain perfusion and oxygen delivery.

 

[alex3619]

I get this instant cheerfulness from beet. I wonder if it's an effect of improved brain perfusion and oxygen delivery.

It could well be, isn't beet a high nitrate food? I also love pickled beets.

 

[alex3619]

Can you get Imdur?? Looks like they have been using that. Sustained release. I think it is available in 30 and 60 mg.

Being housebound I rarely get to see my ME doc. I know sustained release is available, but I am unsure of the brands or dosage.

 

[Sidereal]

It could well be, isn't beet a high nitrate food? I also love pickled beets.

It is. Taking high doses of it over the last few weeks has produced some interesting results. Last night for instance I went for a 20 minute walk, something I haven't been able to do in a couple of years.

 

[deleder2k]

Being housebound I rarely get to see my ME doc. I know sustained release is available, but I am unsure of the brands or dosage.

I am not sure if my ME doc would prescribe it to me or not. Buying from overseas sounds scary to me.


Imdur is a sustained release version which they used on the 6 patients that was mentioned in the patent filing.

http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/apcimdur/$File/apcimdur.pdf

 

[Gingergrrl]

It is. Taking high doses of it over the last few weeks has produced some interesting results. Last night for instance I went for a 20 minute walk, something I haven't been able to do in a couple of years.

@Sidereal wow a 20 min walk, that is unbelievable! This really makes me want to try the beet root.

Just have a few questions:

1) would beet root be low histamine b/c someone mentioned pickled beets and I have to eliminate all pickled foods with this diet.

2) would you take beet root and nitro together or just one vs. the other?

3) it sounds like beet root is not lowering your BP the way nitro does which is my main concern w/nitro. The sublinguals say not to take if systolic BP under 90 which mine often is.

4) what is your dose now on beet root? I think you said you took 10 at a time?

Thanks!

 

[Sidereal]

@Sidereal wow a 20 min walk, that is unbelievable! This really makes me want to try the beet root.

Just have a few questions:

1) would beet root be low histamine b/c someone mentioned pickled beets and I have to eliminate all pickled foods with this diet.

2) would you take beet root and nitro together or just one vs. the other?

3) it sounds like beet root is not lowering your BP the way nitro does which is my main concern w/nitro. The sublinguals say not to take if systolic BP under 90 which mine often is.

4) what is your dose now on beet root? I think you said you took 10 at a time?

Thanks!

1) I don't know about its histamine content. You can check this on histamine websites. The first couple of times I took it it gave me some itchiness but that resolved quickly. I wouldn't recommend eating pickled anything if you have mast cell issues! I take capsules.

2) I wouldn't recommend taking both at the same time in case one or both of them drop your BP. I'd try each on separate days and see what happens.

3) Beet is increasing my BP for a few hours after I take it. I regularly see 110/70 on the monitor now which was previously unthinkable. A couple of times I even saw 120/80. The effect wears off after a few hours.

4) I take 5 or 7.5 grams twice daily.

I'm dealing with some horrible side effects of meds I've been experimenting with lately so it's hard to figure out how I'm really doing.

 

[charlie1]

This thread is so interesting. Thanks for posting

@Gingergrrl You asked, "@Sidereal What supplement is this?!!! If it boosts your BP and gives rapid relief it may help me b/c we have very similar cases in many ways."

I've no idea if Sidereals' supplement is in the KPAX formula or not but because of the pm's that you and I've shared in the past about our low blood pressure and other similarities, I think you'll be interested to know that my low blood pressure has turned around! I don't know if it's a fluke, co-incidence or what but although my diastolic can still be lowish at times, my systolic has seen big improvements! This also randomly happened a few months ago so I can't attest that it's entirely due to the supplementation of the KPAX and CoQ10 or even if it is at all. As I was very deficient in DHEA, I also started .5 micronized DHEA in January which I think may the reason I'm not bradycardic anymore.. Regardless of why my vital signs have improved so much, I just know that I love feeling more 'clear headed' and 'alive' Here's some incredible recordings :

Wednesday March 18 was a regular day... 96/66 pulse 64 88/49 p61 then..... wait for it.........

Started K-PAX Immune am & lunch and CoQ10 am & bedtime on Thurs: wait for it ..............

Thurs- 1 pill@ breakfast, 2 hrs later... 117/66!! pulse 65 , 1/2 pill@ lunch, 4hrs later ....120/55 p63

Fri - 113/74 p58 upon waking, 1 pill@ break, 2 hrs later 121/59 p 65,1/2 pill@ lunch. .midnite 110/67 p60

I had very bad PEM on the Sunday and Monday so on the Tuesday I switched to the KPAX Energy which contains caffeine. The rep said it's unlikely I'd get overly stimulated( the caffeine is used as a transporter to get the nutrients in the cell rather than as a coffee type of caffeine hit) yet I was afraid to take the pill b/c I never drank coffee in my life. But fortunately, it didn't cause any ill effects The KPAX Energy is the formula that is being used in the Synergy Trial (except Ritalin is used instead of caffeine)

So for about 2 1/2 wks now I've had near normal daily blood pressure recordings. Only a few times has my systolic been in the 90's, the lowest being 92/51 for some reason last week. My daily brain fog is much less but I still can feel weak if I do too much. It's a strange thing for me to experience PEM with so much less of the cognitive impairment! Crashes can still be difficult but fortunately I've discovered they're so much easier when a person can still talk and think! I'm going to increase the KPAX dose tomorrow by another 1/2 pill which will have me at still less than 1/2 the suggested dose. Anyway, just thought you'd want to know and rather than send you a PM about it (sounds like you're getting lots), I knew you would see it on your thread.

I get this instant cheerfulness from beet. I wonder if it's an effect of improved brain perfusion and oxygen delivery.

That's often what happens to me when I take my migraine abortive, Maxalt which is not surprising really since it's a triptan. Interesting though that my doctor and pharmacist said they don't know other patients that get the cheerfulness/endorphin increase from taking a triptan. I'd love to take it daily but not allowed
.
Triptans are used in the treatment of migraines and cluster headaches.
Mechanism of action
Their action is attributed to their agonist[2] effects on serotonin 5-HT1B and 5-HT1D receptors in cranial blood vessels (causing their constriction) and subsequent inhibition of pro-inflammatory neuropeptide release.

Thanks to everyone for sharing such insightful posts. I'm learning so much. I am going to change my selenium type and dose (currently 100mcg of Picolinate Complex/day) and look into the link in this thread that talks about magnesium. I want to take the proper dosage of that as well.

@alex3619 You're brave

 

[Gingergrrl]

@charlie1 and everyone else who asked me questions/updates, will try to post tomorrow afternoon after my cardiology appt. Have not been feeling as well today (not b/c of cardiac issues and due to a different issue at the moment which is a med side effect) but appreciate so much all the support .

 

[Gingergrrl]

My cardio appt is in about 2-3 hours but right now my BP is 83/62 and I am having a lot of shortness of breath when I stand (but no angina.). My BP has to be over 90 systolic to take Nitro so not sure this will be an option for me.

I am pretty sure my cardio will suggest Droxidopa again and now I am wondering it I should try it (as long as it doesn't have food dyes in it?). I feel like I have run out of options to raise my BP.

ETA: Just googled it and Droxidopa has about 4-5 food dyes in it including Tartrazine so now I know this one is out too.

 

[charlie1]

I can't remember if if you are already are doing the usual self help measures but these 2 in particular have given me increases. Wearing compression socks and Spanx (abdominal binders with velcro did nothing for me) and taking Sudafed (but might make you tachy??). Have you tried these things? I would often get both SOB and chest pain with low blood pressure so I know how horrible that is. I was always gasping/gulping for air and rubbing my chest. Since my bp has increased, the SOB hasn't happened for awhile now although I can still have occasional chest pain.

 

[nandixon]

@Gingergrrl, I don't know anything more about this than what I'm about to mention, but it sure sounds to me like there's a very good chance that your hypotension is histamine driven, given your reactions and sensitivities to things.

I think the usual treatment is a combination of H1 and H2 blockers, but if you're not able to take both of those for some reason, or they're not working, then Gastrocrom (oral cromolyn) is the obvious thing to try to attempt to address the problem farther upstream, i.e., stop the mast cells from releasing histamine in the first place.

Your doctor at the OMI is familiar with this and I would think he would have already mentioned it. Cromolyn can be pretty expensive, I think, and has to be taken several times a day, but hopefully insurance might cover it.

 

[alex3619]

The primary pattern seems to be a headache that never quite happens at my dose, and better sleep. I will start playing with dosage soon, and also methyl folate and adenosyl cobalamin.

 

[Sidereal]

My cardio appt is in about 2-3 hours but right now my BP is 83/62 and I am having a lot of shortness of breath when I stand (but no angina.). My BP has to be over 90 systolic to take Nitro so not sure this will be an option for me.

I am pretty sure my cardio will suggest Droxidopa again and now I am wondering it I should try it (as long as it doesn't have food dyes in it?). I feel like I have run out of options to raise my BP.

ETA: Just googled it and Droxidopa has about 4-5 food dyes in it including Tartrazine so now I know this one is out too.

For what it's worth, I know those numbers look really bad but I wouldn't get hyperfocused on trying to artificially raise blood pressure because doing so may not do very much for your overall condition. I do appreciate that this is the standard medical approach these days (find some objectively measurable abnormality in the patient, spend no more than 10 seconds thinking about whether it's going to help to bring it in range or why it's out of range in the first place, prescribe some ghastly drug to "treat" it) but just because doctors operate like this it doesn't make it right.

I can tell you that raising my BP to normal leads to only marginal symptomatic improvement. In other words, still disabled, unable to participate in normal life. There are plenty of people with ME/CFS who have normal or high blood pressure and yet experience the same problems with orthostatic intolerance and other symptoms. There are also people out there in the world who are hypotensive and don't have ME/CFS symptoms.

The autonomic abnormalities in ME/CFS are, in my opinion, vastly overhyped because historically it was the only thing we could objectively measure in this illness, hence the obsession with tilt table tests etc. This has also led to prescribing of dangerous drugs like fludrocortisone which have potentially very serious metabolic and psychiatric side effects and have never been shown to actually work in this population in actual RCTs. The same goes for herpes virus titres, NK cells and all other mythological nonsense that's pervasive in this field.

 

[Gingergrrl]

@charlie1 @nandixon @Sidereal I want to respond to your messages before I update everyone on my cardio appt today.

I can't remember if if you are already are doing the usual self help measures but these 2 in particular have given me increases. Wearing compression socks and Spanx (abdominal binders with velcro did nothing for me) and taking Sudafed (but might make you tachy??). Have you tried these things? I would often get both SOB and chest pain with low blood pressure so I know how horrible that is. I was always gasping/gulping for air and rubbing my chest. Since my bp has increased, the SOB hasn't happened for awhile now although I can still have occasional chest pain.

Charlie, I do wear compression stockings from a great company that Sushi told me about and they have been helpful but half the time I forget to wear them b/c my arms are not strong enough to put them on by myself. I cannot take Sudafed or anything with epinephrine in it b/c of tachycardia. But I do know that when my systolic BP is around 100 vs. the low 80's that I do feel better. I just cannot make it go there!

@Gingergrrl, I don't know anything more about this than what I'm about to mention, but it sure sounds to me like there's a very good chance that your hypotension is histamine driven, given your reactions and sensitivities to things.

I think the usual treatment is a combination of H1 and H2 blockers, but if you're not able to take both of those for some reason, or they're not working, then Gastrocrom (oral cromolyn) is the obvious thing to try to attempt to address the problem farther upstream, i.e., stop the mast cells from releasing histamine in the first place.

Your doctor at the OMI is familiar with this and I would think he would have already mentioned it. Cromolyn can be pretty expensive, I think, and has to be taken several times a day, but hopefully insurance might cover it.

Nan, I actually think you could be on to something (re: the histamine affecting my low BP and shortness of breath and so do both of my doctors.) I am now taking Zyrtec, Daosin and Quercetin daily and in the process of having Zantac made for me by a compounding pharmacy (b/c OTC Zantac has food dyes in it.)

My ME doctor mentioned Cromolyn back in Dec when my histamine test was 3x the normal level but at that time I had not had any reactions. I have always been sensitive to medications and to certain foods but had never had a true allergic reaction like I did recently (twice) from food dyes. If my current regime does not work, we may try the Cromolyn.

@Sidereal

For what it's worth, I know those numbers look really bad but I wouldn't get hyperfocused on trying to artificially raise blood pressure because doing so may not do very much for your overall condition.

I normally am not obsessed with BP but today I felt incredibly weak just trying to stand still in one spot which is usually okay for me. At the cardio appt (which I will detail in next post), my BP was 90/60 both lying flat and sitting but the minute I stood up, it dropped to 80/60. I had to grab onto a glass table for fear that I would fall. So I do notice (in my case) when my BP is around 100/70 (which is next to impossible to obtain without some kind of medication) that I do feel better.

I know you said that the beet root extract is raising your BP to the point that you were able to take a 20 minute walk (which made me yell & cheer for you out of happiness!) so wouldn't you agree that raising BP can be helpful? Although I certainly agree with you that it is not a cure for the illness. Also with my BP at 80/60, I am not allowed to even take the Nitro b/c it is too dangerous and my systolic has to get to at least 90 to take it.

I do appreciate that this is the standard medical approach these days (find some objectively measurable abnormality in the patient, spend no more than 10 seconds thinking about whether it's going to help to bring it in range or why it's out of range in the first place, prescribe some ghastly drug to "treat" it) but just because doctors operate like this it doesn't make it right.

I agree with you and most doctors that I have seen will focus on the one slight abnormality that they can find even it is not the thing that is causing me symptoms. I did feel today that my cardio was more thoughtful about my situation and I want to get everyone's opinions in this thread when I explain his recommendations (and then I will see him again in May.) I am also hoping that he will speak to my ME doctor which he said he wants to do but this has always been very difficult to coordinate in the past (b/c of my cardio and not the other way around.)

I can tell you that raising my BP to normal leads to only marginal symptomatic improvement. In other words, still disabled, unable to participate in normal life. There are plenty of people with ME/CFS who have normal or high blood pressure and yet experience the same problems with orthostatic intolerance and other symptoms. There are also people out there in the world who are hypotensive and don't have ME/CFS symptoms.

I absolutely agree with you and I have had low BP my whole life but it was usually more like 95/65 and was never 80/60 prior to ME and it seems to be even lower than usual since I started having these severe histamine issues. So if I can fight the histamine, it may free up my immune system to fight some of these viruses (vs. being busy with the histamines.) Time will tell and I have no idea.

The autonomic abnormalities in ME/CFS are, in my opinion, vastly overhyped because historically it was the only thing we could objectively measure in this illness, hence the obsession with tilt table tests etc. This has also led to prescribing of dangerous drugs like fludrocortisone which have potentially very serious metabolic and psychiatric side effects and have never been shown to actually work in this population in actual RCTs. The same goes for herpes virus titres, NK cells and all other mythological nonsense that's pervasive in this field.

It is interesting that you mention Florinef (which for the record I will not be taking again) but it made me think back to the 3-4 months that I tried Florinef that the generic version that I had was a bright yellow pill that I would now bet money had Tartrazine in it which I am now highly allergic to. I now wonder if this is at least partially why the Florinef made me feel sicker? I am going to try to find the old bottle and google the inactive ingredients just for my own knowledge.

I am not sure that herpes (or enterovirus) titers or NK functioning is nonsense (IMO) b/c I do wonder if I could get the EBV IgM and early antigen titers negative again and lower the high coxsackie titers and raise my NK functioning if I would feel better? Obviously my attempts so far to do this have not worked and I do not know the answers. But I think the studies that OMI are trying to do to measure and test some of these things in the severely ill bed-bound population are really important and on target so we will get some real data in this area. There is a missing link somewhere and we need to find it.

Thanks again to everyone for all of your support and questions.

ETA: I think I am going to type up the post re: my cardio appt tomorrow when I am more alert!

 

[Sidereal]

I normally am not obsessed with BP but today I felt incredibly weak just trying to stand still in one spot which is usually okay for me. At the cardio appt (which I will detail in next post), my BP was 90/60 both lying flat and sitting but the minute I stood up, it dropped to 80/60. I had to grab onto a glass table for fear that I would fall. So I do notice (in my case) when my BP is around 100/70 (which is next to impossible to obtain without some kind of medication) that I do feel better.

I know you said that the beet root extract is raising your BP to the point that you were able to take a 20 minute walk (which made me yell & cheer for you out of happiness!) so wouldn't you agree that raising BP can be helpful? Although I certainly agree with you that it is not a cure for the illness. Also with my BP at 80/60, I am not allowed to even take the Nitro b/c it is too dangerous and my systolic has to get to at least 90 to take it.

No doubt 80/60 sucks big time and I've been there myself in the past. It was awful. Raising BP does generally make one feel better, less weak, but I am skeptical that this translates to major functional improvement for most people. Does raising my BP to 110/70 make me able to go to work? Nope.

 

[Gingergrrl]

No doubt 80/60 sucks big time and I've been there myself in the past. It was awful. Raising BP does generally make one feel better, less weak, but I am skeptical that this translates to major functional improvement for most people. Does raising my BP to 110/70 make me able to go to work? Nope.

@Sidereal I fully 100% agree with you and I was officially medically separated from my job last week that I loved dearly. I know even if I could get my BP to 110/70 (which is looking highly doubtful and unattainable) that I will not work again and my career is over. But if I can do anything to improve my weakness, shortness of breath, allergic reactions, etc, and that raises my quality of life even in the most miniscule way (like allowing me to go back to the park with my husband to push me in the wheelchair to take pictures on my phone- which I cannot do right now) then I will take it! Sorry for all the run-on sentences!

 

[Sidereal]

@Sidereal I fully 100% agree with you and I was officially medically separated from my job last week that I loved dearly. I know even if I could get my BP to 110/70 (which is looking highly doubtful and unattainable) that I will not work again and my career is over. But if I can do anything to improve my weakness, shortness of breath, allergic reactions, etc, and that raises my quality of life even in the most miniscule way (like allowing me to go back to the park with my husband to push me in the wheelchair to take pictures on my phone- which I cannot do right now) then I will take it! Sorry for all the run-on sentences!

Oh for sure. Every tiny bit of improvement in functionality with this wretched illness is huge.

 

[starlily88]

I get what you are saying about your BP. Mine gets quite low last few years.
In 2014 winter it got so low all the time like 90/60.To me I was just fine, With ME/CFS my blood volume in my body is low. I passed out in my bank 3 times in 2014 due to "syncope" or drop in my blood pressure. My BP was now quite low like 85/62 - and made worse if standing in line for long time. My standing in line and having low blood volume along with low BP made my blood pool in my legs, leaving my heart and brain, thus passing out for long time.

I totally understand how you feel. Having my BP a bit higher helps me a lot. Rather having my BP not dropping while I am in public is a big help - for this I have had to change standing in line. This is no longer possible for me to do. Without any warning at all, I pass out - I don't feel weak before it happens - I am just unconscious.

Even non-CFS people have this, like my Neurologist. She told me tricks to help from me passing out, and trying to get my BP to not drop. I wish for you to go to the park with your husband and take all the pictures you want. Good luck!

 

[Sushi]

I have had to change standing in line. This is no longer possible for me to do.

She told me tricks to help from me passing out, and trying to get my BP to not drop.

The best trick I have found is to sit on the floor--damn what anyone thinks! Then I scoot along on my butt in the line. Second best is asking someone to hold my place while I find something more socially acceptable to sit on.

Or, and this one is "fun," ask the establishment what provisions they have made for the handicapped under the Americans with Disabilities Act.

Sushi