This Is MS Multiple Sclerosis Community: Knowledge & Support

Fingers fully re-inflated on .1mg dose but a bit of neck and shoulder tension has returned. I don't want to go back to mega doses of caffeine to give me the boost I need to get to the perfect place with Aldo. I'm going to try a bit of hibiscus tea.
http://naturalmedicinejournal.com/artic ... rticle=215

Should be interesting!

The hibiscus tea seems to have worked though more slowly than I would have liked...5 hours until neck and shoulders completely relaxed again. I wasn't even that tense relative to my pre-clonidine condition. What bothered me most were the occasional throbs of *something* I was experiencing in/around the brain stem area (I think??). I was still relaxed enough (ie not a ball of knots) to be able to isolate where the feeling was coming from. Those are gone for now. I'll be more convinced after a week or so of lasting results.

I've done a bit more reading on hibiscus tea. If you are interesting in targeting the hpa-axis dysregulation but don't want to go the pharmaceutical route, hibiscus tea might be a good option. It works to suppress aldosterone or aldosterone effects and either lowers cortisol or mitigates free radical damage from cortisol (conflicting webidence).
https://www.thieme-connect.de/ejournals ... 327864.pdf
Starting from scratch, it will probably take at least 2 weeks @ 2-3 cups a day to feel a difference. Improvements should continue after the initial 2 weeks. If you take meds, check for interactions before drinking the tea. I think acetaminophen can be a problem...
http://jn.nutrition.org/content/140/2/2 ... nsion.html
http://jn.nutrition.org/content/140/2/298.full

I feel wonderful. If it weren't for some residual numbness in my hands (which seems to be fading even more), I wouldn't know I have MS. I am currently on a .1mg clonidine patch and I am drinking 2-3 half cups of hibiscus tea a day.

Jimmylegs, I threw the bet yesterday. I just can't get enough vitamin d in my mostly vegan diet whilst trying to keep my potassium up and I am trying to get rid of my tinnitus (vit d deficiency can contribute to this). I can't find the vitamin d super mushrooms and the vit d lamps look a bit scary to me. So, I'm taking 4000iu d3 every other day. Did you know d3 supplements come from sheep's wool? Gross! I will happily quit when I can get my pasty self back in the sun.

Off to attempt to wear myself out so I can finally sit still long enough to read a book that's been sadly neglected since my energy has returned. I must figure out how to keep this energy under control...I kind of enjoy having a hubby who no longer acts like his home is a luxury hotel.

yes i knew that vit d3 is isolated from sheep's wool. 'from the sunny meadows of new zealand' as they say in the ads. nothing has to die at least i take my drops like a good girl!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Current status: Frustrated and wondering...

I had a few wonderful days at the end of last week and beginning of this but now I'm having some random sleepy days. I'm not tired...I'm sleepy. <Yawn> Weird. I wonder if my hippocampus isn't becoming re-sensitized to cortisol, causing a reduced need to suppress cortisol and aldosterone with clonidine. Clonidine can make you sleepy. In the past, it only made me sleepy on the first day and the day that I doubled my dose. If this keeps up, I'm going to have to get my neurologist to prescribe clonidine in a lower dose, pill form. Bleh. But maybe this means hpa-axis dysregulation isn't forever with MS. Who knows?

I'm also experiencing strange pain in my hands that comes and goes. It isn't related to activity or touch (touch makes them feel better). It also doesn't affect my sensitivity or feel numb and tingly. I had it previously in my calves and ankles and thought it was because of a vitamin/mineral deficiency and once because my patch had apparently gone bad when I accidentally soaked it (medicine side) and didn't apply a new patch. But now my calves and ankles are great and my hands are feeling it. I'm guessing this too shall pass in a few days and wondering if it isn't some sort of pain from nerve regeneration. Why wouldn't it happen at the same time as my legs though? Taking Acetyl-L-Carnitine to see if that helps.

Despite the sleepiness and mild pain, other improvements hold.

After less than two months on Clonidine, I have become more responsive to the drug (the opposite of what usually happens). Yesterday, in addition to feeling sleepy, I became not dizzy, but something like dizzy. I thought it might pass but it didn't so I stuck a piece of tape on the med side of my patch to cut my dose by 1/3...MacGyver-style medicine. I slowly began to feel better and didn't experience the kick-back effects I felt when I went from .2mg to .1mg. Knock on wood. I'll have to call my neuro today to see how he wants me to proceed...I'm sure he won't be a fan of my tape method. lol

I believe my hippocampus has regained sensitivity to cortisol and my negative feedback loop is once again working...hpa-axis is correcting on short term therapy. This time-frame is consistent (actually a bit longer) with studies performed on cortisol suppression and hippocampus re-sensitization. I still never thought it would really happen like this. I thought I would have to be on clonidine forever. MS-related hpa-axis dysregulation in some cases is NOT caused by lesions and is reversible. (Unless there is another explanation for my sudden increased sensitivity to clonidine.)

Things could change in an hour or a day, as they have all along in my little experiment. But, I am thinking I will soon wean completely off clonidine and monitor my hpa-axis through regular Na and K tests.

PS I stopped drinking the hibiscus tea a couple days ago as I was worried I was suppressing too much. I also stopped the vitamin D for the same reason. I think I will take 5000iu/week though when things settle out. Hands have also stopped hurting.

Well, last night I took .05mg of clonidine. Bleh. I went to bed sleepy and a little "not dizzy but like dizzy" and I woke up the same way. Blood pressure is too low. So, I skipped the morning dose. If things don't get too far out of hand today, I'm going to stop taking it to see what happens. I'm hoping after a day of mild discomfort, I'll be feeling right as rain...if not, I can always try .025mg. <sigh>

Improvements (aside from energy) are holding.

Hi Anonymoose,

I'm sure your focus on Aldosterone is right but like all this stuff is only part of the things we need to look at. Controlling the aldosterone is helping with vasodilation but it won't help with ATP production as it is part of processes that relies on ATP expenditure.

Whilst this animation doesn't talk to aldosterone it's saves a thousand words if you look at it for a moment.

http://highered.mcgraw-hill.com/sites/0 ... works.html

What I think you need to add is a higher input from ATP. The ATP donates a molecule of phosphate to drive the sodium potassium pump and that won't be working properly if ATP is lacking hence you are sleepy.

I'm assuming you are not on blood thinners otherwise seek some advice before trying what I'm just about to propose. Before going to bed take 300 -450 mg of a good brand of coenzyeme Q10. You will need to pay up as the cheap brands unfortunately are just rubbish.
The coenzyeme Q10 will boost the production of ATP so the sodium potassium pump should work a lot better.

My thinking on why ATP is down is the enzyeme glyceraldehyde-3-phosphate dehydrogenase does not work and it is neccesary in the production of ATP. Fortunately we can get around it with coenzyeme Q10 provided the dose is large enough.

As I said earlier, don't do it if you are on blood thinners without real medical advice as the Q10 will elevate the effect of that form of medication.

I take 450mg of coenzyeme Q10 before bed each night. I wake bright eyed at 5.15am and go till 10pm having worked a full day. I still wake early on weekends as I am too full of energy. It's not the only thing I do but I would be very interested to see what you find happens if aldosterone is regulated and ATP is boosted.

Regards

Thanks Scott,

I had read that clonidine can cause CQ10 deficiency so I did take a CQ10 (ubiquinol actually) once. It made me feel weird, kind of shaky and on the verge of something (who knows what?), so I didn't take it again. Maybe I should have taken it at night. I'm not on any other meds but I'm going to give it a few days before I start adding anything else. The low blood pressure is quite enough weirdness for me! If energy continues to be an issue, I'll give it a shot again.

I also had increasingly good, even great, energy while on clonidine until early this week. I'd been suppressing the aldosterone for almost 2 months. Something changed...CQ10 deficiency?? That would explain the sleepiness but not the strange almost dizzy feeling. Or would it?? And the symptoms the clonidine fixed, aren't coming back. I must not be producing as much aldosterone.

I love that simple animation of the na/k/atp pump...I've used it myself before. I agree with you that pwMS have issues with that pump. I suspect it's failure is the cause of our lesions. It doesn't work well with shortage of any of the components and that can result in BBB failure.

Hi Anonymoose,

Recently I tried lowering my PH by using a bit more bicarbonate of soda than was wise. I ended up having very watery bowel movements and had clearly overdone it. The side effect of that is I would have thrown the pump out of balance and I experienced similar shaky wierd symptoms. I backed off the bicarb and introduced two bananas a day to add potassium. I ended up balancing it out with the bananas and one level teaspoon a day of bicarb and the shaky feeling went. I don't think the Q10 had anything to do with it. Maybe your approach is not quite balancing the pump.

I'm also trying to limit iNOS and replace it with eNOS by taking a level teaspoon of l-Arginine a day. I think that works.
In addition I take a large glass of carrot juice for the retinoids to influence RXR and a swig of Olive leaf extract to influence PPAR.
As usual I'm still taking Valtrex but after a decade I'm down to one per day and I have been able to drop Avonex without any ill effect. There was a time when I couldn't have done that.
Regards

Hi Scott,
That bicarbonate...is it sodium or potassium bicarbonate you are taking? Aside from overdose of bicarbonate causing digestive issues, if it is sodium bicarbonate, that would mess with your na/k/atp pump. We already have loads of salt in our systems due to aldosterone's sodium retaining function (sodium also suspected to stimulate MS immune activity). Before clonidine, I was super salty (on a pretty low sodium diet). Now I'm not. Don't ask how I know. lol I think potassium bicarbonate (alka seltzer) might lower your ph and help out your na/k imbalance. I've been hitting the potassium rich foods to balance the pump too. Your carrot juice contains a good amount of potassium as well as vitamin A.

The l-arginine is a good idea too. I'll have to read up on olive leaf extract and PPAR. What does it do?

I think there are a number of ways of dealing with the aldosterone issue. I did it with a drug. Jimmylegs and others are (mostly unknowlingly) doing it with vitamin D (vitamin D is a negative regulator of RAAS). You are dealing with it by addressing the fallout. It's good to have options! I think I'm going to stay on top of my zinc (for cortisol) and vitamin D (for aldosterone) as soon as things settle.

It's been almost 22 hours since my last clonidine dose and I am finally starting to feel normal. Shwew. I'm pretty sure that means low blood pressure was causing my issues. Phase II of the experiment begins. Will my hpa-axis stay fixed??

Did you mean that you were trying to raise your pH as in reduce acidity and make it more basic?

Have you been checking your blood pressure while you've been on clonidine?

NHE,
No. I've been a bit of a nitwit in that regard. Bp has never been an issue for me so my head was in the sand. It was normal when I started. And it is nearing normal once again...based on how I feel not an actual bp test.

Scott,
I can never keep that ph stuff straight in my head either. It's a miracle our pool isn't a swamp.

Hi Again,

Sorry. I was clumsy. I'm taking Bicarbonate of Soda but now only a tiny amount (a small teaspoon per day) and I was trying to be more basic. My bad habit is megadosing to see what happens. I take the small dose because it makes me feel better. Who knows why!!!
The biggest issue we all face is working out how some of the things we do interact or contraindicate. I'm happy with the core of the approach I use and I'm slow to add something new (although I do and will continue to experiment).
My suspicion is our problem is metabolic and not immunological and starts either before birth or in our early infancy. The elevated levels of iNOS imply the endothelium is damaged so the question is how. Your focus on Aldosterone is interesting because it is important in sodium transport and that in turn influences vasodilation, potassium levels and many other issues. this could be the source of damage to the endothelium leading to elevated iNOS. Maybe its Renin or Prorenin, I'm just not sure.
If iNOS is elevated then our risk of excessive Peroxynitrite is also elevated if Superoxide is introduced. The knock on effect of excessive Peroxynitrite is a well documented problem.
Sometimes when I have been experimenting I back off what I normally do and introduce the new element then add back what I've been comfortable with to see what happens.
I'd still be interested to see what you think happens with Q10 but if you have had difficulty doing it maybe you could try flipping the order around as I have tried. Just a suggestion. Please don't do it just for me.

PPAR is another of the thyroid like receptors. VDR is another (in fact Vitamin D has three receptors). PPAR regulates lipids and inflammatory response. The Olive leaf extract is a really good source of oleuropein which upregulates PPAR. The master switch for all thyroid like receptors is RXR which is upregulated by 9 cis retinoic acid which I get from carrot juice.

Regards