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

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Having my BP a bit higher helps me a lot. Rather, [not] 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.

I think you left out a word (not is missing?) so I inserted it. Hope that was correct!

My solution for waiting in line is to carry a folding cane/seat like this:
cane-seat.jpg


Here's an image of another brand showing how it's used (have to sit with handle in front):

cane-seat-travelon.jpg

These are not comfortable to sit on for longer than a few minutes of waiting in line. And for very long lines they are not good because you have to get up and sit down a lot (then I use Sushi's method of having someone hold my place while I wait in a single spot) . But for a brief wait at the grocery checkout line or pharmacy this chair has been very helpful.

I used to sit on the floor before I had this chair. Waiting for elevators was when that happened most often. But it is much easier to get up from sitting on this chair than from sitting on the floor!

EDIT - sorry if this went off topic, I just glanced at the posts further up the thread and although dropping BP is related I think the chair might be veering off a bit too much? I don't know, brain not fully in gear yet!

(Waves "hi" to @Gingergrrl ! :oops:)
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
@Gingergrrl - do you know your B6 status? Low B6 is associated with histamine intolerance (http://www.bookorphanage.com/vitaminb6.html) - if you google B6 histamine, you'll find a lot of info. I don't have histamine problems but found that my B6 was very low, and gradually worked up to 150 mg. a day (in divided doses) of B6 in the form of P-5-P and I think B6 deficiency is very common in people with CFS/ME.

B6 is crucial for so many different functions, including utilization and breakdown of protein, and if there's a deficiency, this can lead to leaky gut which can lead to histamine formation, etc.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you to everyone for all the additional info but I am not well enough to take it in right now. I use a wheelchair any time we go to the doctor so I am never standing in line. I can't carry anything (not even a purse) so would never be able to carry that cane/seat device. I am really weak right now and a lot sicker than I was before. I apologize that this response is so brief. Thank you to everyone who is trying to help me.
 

Gingergrrl

Senior Member
Messages
16,171
@AndyPandy, thank you and I know that you too truly understand the loss of your career.

This has been really hard for me to grasp but I guess that probably belongs in another thread (but I am too tired to make one and too sad to really focus on this issue beyond my response here.)

I worked in my field since I was a teenager and formally with my masters & license for 16 years. I did not plan to retire for another 21 years (at minimum!) and was so happy and gratified with my work even though it was not an easy job.

My employer turned on me the moment I got ill and my extreme loyalty to them was ultimately not returned but that is another story not for here. When I look at my degrees and awards and thank you cards from my former patients and their families, they are so foreign to me now and it truly feels like that person is already dead.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
The best trick I have found is to sit on the floor--damn what anyone thinks!:cool: 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.
Sushi, you crack me up, you are so funny :lol: It feels so great to laugh this hard :rofl:
When I asked my Disability lawyer if I had ADA rights in bank, he laughed out loud. Said they have no obligation.
I never returned to my branch, but went to very upscale branch. Treatment was ADA all the way!
I find the more upscale the store and area is, more help rendered.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I think you left out a word (not is missing?) so I inserted it. Hope that was correct!
Thanks - I actually knew it sounded wrong. I did mean to say it your way "Rather not having my BP dropping"
Thank you for the correction. Thanks for the cane seat, ingenious. Never saw that before.

I did write to Dr. Charles Lapp to see how "normal" this is for CFS. His grave concern sort of worried me.
He didn't like that I had no symptoms at all before I passed out. Even when a guy asked me if I was alright, I felt nothing at all. I never found it odd but he wanted me to see a neurolgist.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I worked in my field since I was a teenager and formally with my masters & license for 16 years. I did not plan to retire for another 21 years (at minimum!) and was so happy and gratified with my work even though it was not an easy job.
Ginger I am so very sorry that you have lost the career that you loved so much, and worked so hard at. I totally get how badly you feel. I loved my career. It was my identity, my self-esteem, it was who I was.
I assumed I would get better and go back to work so I didn't mourn at first, plus I was sleeping around the clock.
That person who you were with all the thankful patients is not gone. You are going through a major loss. Loosing a spouse, a parent, or a career is right up there as the greatest losses a human being goes through in life. Look in the mirror - you are still a very valuable person, well at least to me because I love your posts, I love your beautiful dachsund.............just keep posting to us.
 

Gingergrrl

Senior Member
Messages
16,171
Ginger I am so very sorry that you have lost the career that you loved so much, and worked so hard at. I totally get how badly you feel. I loved my career. It was my identity, my self-esteem, it was who I was.

I assumed I would get better and go back to work so I didn't mourn at first, plus I was sleeping around the clock.
That person who you were with all the thankful patients is not gone. You are going through a major loss. Loosing a spouse, a parent, or a career is right up there as the greatest losses a human being goes through in life.

Look in the mirror - you are still a very valuable person, well at least to me because I love your posts, I love your beautiful dachsund.............just keep posting to us.

@starlily88 :heart: Thank you so much for your beautiful post to me and you really captured what I am feeling. My career was everything to me and something I worked so hard to obtain through all my years of grad school, internships, licensing exams, and then 16 years of clinical practice. I wonder now what it was all for and in my mind, I am still capable of working and it is only my body that cannot produce the energy to properly maintain my heart rate, blood pressure, breathing, etc.

I also assumed that I would eventually go back to work and never envisioned any other scenario. I appreciate what you said about my patients being thankful to me and that I am still a valuable person. I am not sure if I have talked with you before but the fact that my posts are meaningful to you (and you love my doggie!) means a lot to me and these little reminders are very helpful so I thank you very much and I really mean it. :hug:
 

Gingergrrl

Senior Member
Messages
16,171
I wanted to post an update re: Nitro since I ended up trying it again (0.3 mg sublingual version) which is the third time I have tried it total.

I've been having some significant improvements in raising my BP with a low dose of Midodrine (1.25 mg 2x/day) and Prescript Assist probiotic. Also, a dear friend :hug: from PR discovered a possible reason that my systolic BP was 80-82 every morning might be b/c I have been taking Zyrtec every night for histamine issues. I've taken Zyrtec throughout my life with no problems so never suspected it but in the post-marketing info it lists "Severe hypotension" so I stopped the Zyrtec and my AM systolic BP was back in the mid 90's! I am now considering the child version of Zyrtec b/c I am still very fearful of histamine reactions.

With the Midodrine my systolic BP was around 100-106 the last few days and I could breath better, walk further without the wheelchair and do more activity. So 2-3 days in a row I overdid it (but to explain "overdoing" it is still about 1/100th of my prior life.) It meant walking to the car without a wheelchair (2-3 min walk) or riding longer in the car to go on some errands, staying up to do homework with my daughter, having more conversations with friends, getting more paperwork done, etc. We are not talking about anything outrageous!

Yesterday, I was home alone and tried to open a bottle of water that was extremely tight. I have virtually no arm strength (from prior Levaquin injury, pinched nerve in neck, and ME/CFS itself.) But I convinced myself I could open the bottle b/c "I was better now from Midodrine" (I guess I was delusional.) I used all the strength I had to open it and then got short of breath w/chest pressure. It lasted 30-40 min until my husband got home and since my BP was still above 100, I decided to try the Nitro.

It worked in about 18-20 min (similar to last time) and my breathing normalized. However, I later got a feeling of really bad indigestion (similar to when I used to attempt taking fish oil which I cannot tolerate.) Can Nitro cause indigestion or is this unrelated? I started to get scared that I was having a serious heart problem but it seemed unlikely since I had already taken the Nitro and my cardio is convinced that my entire cardiac issues are autonomic. I didn't want to go to the ER b/c in prior episodes (in which I felt even worse) they were completely useless and even mean.

I finally ended up eating dinner and my breathing, HR and BP remained normal and just a feeling of indigestion. All I can think of if it is not from the Nitro, is that it could be from something I ate (since I am attempting to drink decaf coffee again) or from my new probiotic, or from the oil of oregano that I have been taking again daily which is strong.

I am always curious to hear different interpretations or hoping this info will help someone else down the line. My overall experience with Nitro is that it works when I have these episodes which are always triggered by some kind of over-exertion or over-doing it. But it does not work in 2-3 minutes b/c I do not have traditional angina (no blockages on CT scan) so it must be working in another mechanism similar to what Dr. Jay Goldstein reported or what Fluge & Mella are currently working on (in trying to patent new NO drug.) I am still unclear if I have some form of micro-vascular angina?

Thanks to all who are still reading :D :heart: :star:
 
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Gingergrrl

Senior Member
Messages
16,171
@Hip or @zzz Do either of you (or anyone else who has tried Nitro) know if it can cause an indigestion type feeling later after taking it? I asked in my post above but realize it was so long and wordy that the question probably got lost!
 

Hip

Senior Member
Messages
17,824
Do either of you (or anyone else who has tried Nitro) know if it can cause an indigestion type feeling later after taking it?

I have not tried nitroglycerin yet, so don't at present have any experience with it. I am going to try it soon though.
 

Gingergrrl

Senior Member
Messages
16,171
I have not tried nitroglycerin yet, so don't at present have any experience with it. I am going to try it soon though.

@Hip Oops, sorry, for some reason I thought you had already tried it or took it regularly! The version I've tried is sublingual and burns your mouth like acid so it made me wonder if it could have caused the indigestion feeling vs. something that I ate (or another cause?)
 

SDSue

Southeast
Messages
1,066
The KPAX Energy is the formula that is being used in the Synergy Trial (except Ritalin is used instead of caffeine)
Hey, Charlie. Don't mean to be a know-it-all, but I'm on the Synergy Protocol and I had to double check after I read your post (to make sure I'm doing it right!) Here is one place where it states that the supplement used is KPax Immune, not KPax Energy.

It might make a difference if you combine KPax Energy with the Methylphenidate as you may end up overstimulated. Dr. Kaiser and the KPax reps are very clear on one thing: you should never "feel" the stimulant.

If I remember correctly, (and that's always a gamble lol) he found that methylphenidate was more effective than caffeine in providing the spark to our cells when combined with supplementation - hence the Synergy Protocol for us sickos and the Energy formulation for less severe cases.

Or, and this one is "fun," ask the establishment what provisions they have made for the handicapped under the Americans with Disabilities Act.
I did this the night I passed out in the grocery store. :D It was met with a blank stare from the manager that lasted until I finally was able to leave the store. Seriously, the man stared at me the entire time and said nothing. I've long since wanted to pay him another visit lol. Purely for educational purposes, mind you.
 

charlie1

Senior Member
Messages
315
Location
Canada
@SDSue - I only know that the rep told me that for people wanting to try the supplements that were used in the Synergy Trial, the K PAX Energy was the close match because of the added caffeine.( albeit the synergy trial used ritalin instead. She explained why they replaced one for the other but I forget the reason!)

Apparently they're seeing a lot of success with people taking the energy pills (the caffeine somehow acts as a transporter allowing the nutrients to enter the mitochondria). Since some people react to caffeine, the other choice is KPAX Immune. The Immune formula uses the same nutrients but has a higher potency AND NO CAFFEINE.

The suggested dose:
Breakfast - 2 tablets IMMUNE + 1-2 tablets ENERGY
LUNCH - the same as breakfast (before 3pm).

I've found the KPAX customer service to be excellent.The reps will spend a lot of time with you on the phone and welcome any questions regarding dosing etc.

Here's the ingredients for the Energy and Immune Formulation.

per 2 tabs- http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/Energy

per 4 tabs - http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/Immune-support-tablets-30-60
 

SDSue

Southeast
Messages
1,066
Thanks so much, @charlie1 . I'm so confused lol. It looks like the only differences are caffeine in the Energy and extra C in the Immune. (Energy label is based on 2 tablets, Immune label is based on 4, so comparing required rudimentary math - no longer my forte lol - but in the end the formulations are nearly identical pill for pill)

So, with KPax Energy, you don't use ritalin but depend on the caffeine for similar effect?
And with KPax Immune, you have to use ritalin? (suggested dosage is 4 tablets am and 4 tablets by 3pm)

I agree with the customer service comment. They've been awesome.