Clonidine Diary (for RRMS)

Tell us what you are using to treat your MS-- and how you are doing.

Re: Clonidine Diary

Postby Anonymoose » Sat Mar 09, 2013 8:30 pm

Scott,
I'll give the ubiquinol (or would you rather I try CQ10?) a try again in a couple days when I'm out of my current state of flux...unless something goes awfully wrong. I'm pretty sure my aldo is peaking a bit because that's what it's known to do when you stop clonidine. My energy is getting up there again too so I want a steady baseline before I do something that is intended to increase energy.

I'll let you know what happens.

Ooo. And I saw something interesting about bicarbonate and the na/k/atp pump today...and promptly lost it in all of my open tabs. :roll: I'll try to find it again tomorrow maybe.

Experiment Update: After quitting the clonidine, legs hurt last night...resorted to electric blanket and icy/hot and they bothered me no more. Blood pressure back to normal. Energy pretty good. Hands a little buzzy with activity today. Everything else still good.
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Re: Clonidine Diary

Postby Scott1 » Sun Mar 10, 2013 12:17 am

Hi Anonymoose,

The form I'm taking according to the label is ubidecaronone coenzyeme Q10. The raw form (or fully oxidised) for want of a better description. The ubiquinol is a reduced form. I really don't know if its better or not.

http://en.wikipedia.org/wiki/Coenzyme_Q10

Regards
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Re: Clonidine Diary

Postby Anonymoose » Wed Mar 13, 2013 1:24 pm

Scott1 wrote:Hi Anonymoose,

The form I'm taking according to the label is ubidecaronone coenzyeme Q10. The raw form (or fully oxidised) for want of a better description. The ubiquinol is a reduced form. I really don't know if its better or not.

http://en.wikipedia.org/wiki/Coenzyme_Q10

Regards

Scott,
So...I picked up some plain ol' cq10 this past weekend, intending to take it this week. Your post on the PPMS meds thread made me curious about how you got to your current regimen. I started reading your regimen thread and when I got to the point at which you were commenting on increased thirst, a large gong started tolling in my head...I'm pretty sure a sumo wrestler in a loin cloth/diaper was in there too.
http://leadspharma.in/pdf/Role-CoQ10-in ... seases.pdf
It is thought that coenzyme Q10 reduces aldosterone secretions
and compromises the effect of angiotensin in sodium retention (Louis
et al., 1965).
There are several reports concerning the effect of CoQ10
on blood pressure in human studies. In an open-label study, doses of
CoQ10 to maintain a serum level N2.0 μg/mL were added to standard
antihypertensive drug therapy in 109 symptomatic patients with
essential hypertension. The average daily dose of CoQ10 was 225 mg.
Gradual improvements in functional and clinical status were observed
within the first 6 months necessitating a decrease in antihypertensive
drug therapy. Fifty-one percent of the patients were able to use 1–3
lesser antihypertensive drugs at an average of 4.4 months after
starting CoQ10 treatment (Langsjoen et al., 1994a,b).

I think my aldosterone levels are still too low at this point. I had to drink some salty lemonade to re-inflate my fingers today. lol I don't think taking cq10 would be a good idea until things have leveled out. If I ever get there, I'll try it though!

Update: Feeling good. Aside from fingertip insensitivity to temperature, I don't feel like I have MS. Maybe the audio hallucinations and visions are MS symptoms. Anyone else have those?
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Re: Clonidine Diary

Postby Scott1 » Wed Mar 13, 2013 6:59 pm

Hi Anonymoose,

I haven't looked at my old thread for a while but it is a reasoanble summary of how I got to where I am. I had almost forgotten about the thirst issue. It wasn't so much that I was thirsty it was more I couldn't understand why every one else drank so much compared to me. I was actually thirsty but I didn't notice it. I saw on Jimmylegs post that when she was conversing with you on page 34 that she also noted she forgot to drink. I sure the transportation of water is affected in our imbalances at a cellular level which is why we don't notice we are thirsty.
Your other issues regarding hallucinations and visions don't sound like MS to me. If they are recent, perhaps you have an unrelated underlying infection. If you are dehydrating I would look at urinary tract infections.

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Re: Clonidine Diary

Postby NHE » Thu Mar 14, 2013 2:29 am

Anonymoose wrote:Update: Feeling good. Aside from fingertip insensitivity to temperature, I don't feel like I have MS. Maybe the audio hallucinations and visions are MS symptoms. Anyone else have those?


Could these be possible side effects of clonidine? http://www.mayoclinic.com/health/drug-i ... de-effects When did they start?
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Re: Clonidine Diary

Postby Anonymoose » Thu Mar 14, 2013 7:07 am

Oh no!! Sorry guys. I was just poking fun at my ridiculous imagination (gongs and sumo wrestlers). It's not a side effect. Sadly, I've been blessed with it and an offbeat sense of humor for a very long time. :oops:
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Re: Clonidine Diary

Postby PointsNorth » Thu Mar 14, 2013 11:16 am

I just started taking clonidine last night .1mg pill form and again this morning. No relief from spasticity (yet). I will take for the next 2 weeks . . . I read that clo is related to Zanaflex, another spasticity drug. I must get relief from my spasticity!
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Hurry up and wait.
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Re: Clonidine Diary

Postby Anonymoose » Thu Mar 14, 2013 12:36 pm

PointsNorth wrote:I just started taking clonidine last night .1mg pill form and again this morning. No relief from spasticity (yet). I will take for the next 2 weeks . . . I read that clo is related to Zanaflex, another spasticity drug. I must get relief from my spasticity!


Hi PN,
Are you still RRMS? You're a couple years ahead of me in this (my first MS blast was during 2010 Olympics). I'm thinking (thanks to Leonard) that our endocrine, electrolyte imbalances, and metabolic issues change as we progress so I'm worried that clonidine might not be the thing for you. (I know...NOW I tell ya...feel free to virtually smack me)

Did you happen to get your Na/K ratio tested in all those fancy tests you just had? If Na is too high relative to K, the clonidine might be just the ticket. Also, while you are taking it, make sure your K intake is good. Clonidine can cause K loss which is the opposite of what one with high or chronic aldosterone release wants.

Oy. I'm nervous about this. Be careful. I really hope it helps you out too.
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Re: Clonidine Diary

Postby jimmylegs » Thu Mar 14, 2013 4:07 pm

iima - what's your serum mag level, pn?
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Clonidine Diary

Postby PointsNorth » Thu Mar 14, 2013 9:06 pm

@moose. I slept most of the day because of increased dizziness, fatigue with NO decrease in spasticity - same as with baclofen. I will try one more day and then on to Zanaflex. No worries . . I just gotta try. Technically I've been SPMS since 2010 but I've been in freefall since early 2012.

@Jimmy as soon as I get some energy I will post results of my Organic Acids Test. - Don't reckon I'm low on Mg as I take 6-8 caps a day for spasticity. My OAT said my vit D was low altho I've been taking 6000 iu/ day for last 1.5 years! I've increased to 10,000 iu now. I'm very happy that I now have a younger, smart naturopath.
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Hurry up and wait.
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Re: Clonidine Diary

Postby Anonymoose » Fri Mar 15, 2013 7:28 am

PointsNorth wrote:@moose. I slept most of the day because of increased dizziness, fatigue with NO decrease in spasticity - same as with baclofen. I will try one more day and then on to Zanaflex. No worries . . I just gotta try. Technically I've been SPMS since 2010 but I've been in freefall since early 2012.

@Jimmy as soon as I get some energy I will post results of my Organic Acids Test. - Don't reckon I'm low on Mg as I take 6-8 caps a day for spasticity. My OAT said my vit D was low altho I've been taking 6000 iu/ day for last 1.5 years! I've increased to 10,000 iu now. I'm very happy that I now have a younger, smart naturopath.

Ack PN!

You are freaking me out! Please stop taking the clonidine...like...YESTERDAY. I think you are on the other side of the hill. Too little sodium/hyponatremia causes spacticity and neurological issues. The clonidine is lowering your sodium...if you already have low sodium that is a very bad thing to do...
A very sad case of a woman with SPMS and hyponatremia (read if you would like to freak out along with me)
http://clinicalcases.org/2005/09/hypoth ... ns-of.html

Posting now so you see this asap...will add thoughts in a sec

Since I think a lot of MS issues are related to electrolyte imbalances (which change with progression!), I think you should get your electrolytes tested under the care of an endocrinologist. If your sodium is too low, you will want to have medical supervision to manage that. Taking a bunch of salt all at once can hurt you...major bbb disruption.

I've got to go scrub something (my version of pacing). Please post to tell me you've stopped taking the clonidine!
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Re: Clonidine Diary (for RRMS)

Postby PointsNorth » Fri Mar 15, 2013 10:23 am

@moose I'm not taking anymore! My last hope is Zanaflex. Waiting for my B12 cocktail which improved nearly all my symptoms including spasticity.

PN
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Hurry up and wait.
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Re: Clonidine Diary (for RRMS)

Postby Anonymoose » Fri Mar 15, 2013 10:53 am

Oh thank goodness! Schweeew and all that.

I've been digging into spms and ppms. I think I might have found something that could help. Trying to figure out why it, in the very least, isn't a popular regimen. Will post it in a new thread when/if I get it together.
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Re: Clonidine Diary (for RRMS)

Postby Anonymoose » Thu Mar 28, 2013 12:13 pm

MS symptoms have stayed at bay with the exception of a little left shoulder tension on last day of "that time" (which coincided with a 12 hour stomach bug) and a few hours of my hands hurting after taking mag l threonate.

I had my blood drawn this morning to get levels to compare against baselines. Only 48 hours until I know if the clonidine had any impact on them. I think it did...the moons on my thumbs and one index finger are coming back :D
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Re: Clonidine Diary (for RRMS)

Postby Anonymoose » Thu Apr 11, 2013 7:12 am

The day before yesterday my neck started tensing up again, so I took .05mg of Clondine and sadly was amazed at how much better it made me feel. Symptoms were slowly creeping back so I didn't notice them. :(

I was going to try amiloride as it is a milder anti-hypertensive and diuretic but it doesn't really address the cortisol issues much. It's more of a downstream blocker for some of the things aldosterone does. I still might try it some day, but I have a new drug interest for today's visit with my neurologist.

I want to try antalarmin now. It's an anti-anxiety drug that blocks CRH receptors. This would work one step upstream of clonidine and not impact RAAS (ie cause my blood pressure to plummet or shrivel me fingers). I'm thinking CRH might be the bugger that is out of hand with me. Why would my symptoms slowly return with no stress?? Is CRH drunk driving my endocrine system? Anywho, antalarmin should help keep my BBB intact and it has been shown to be protective against development of EAE (which isn't MS but whatever :P) Plus, it doesn't impact the parasympathetic system like clonidine does so it should be easier to pinpoint if the cort/aldo cause some of my symptoms. Some related links.

CRH and immune/inflammatory disease http://www.eje-online.org/content/155/s ... 7.full.pdf

CRH and BBB http://jpet.aspetjournals.org/content/3 ... 1.full.pdf

Oral administration of a corticotropin-releasing hormone receptor antagonist significantly attenuates behavioral, neuroendocrine, and autonomic responses to stress in primates http://www.pnas.org/content/97/11/6079.full.pdf

Corticotropin-Releasing Hormone Contributes to the Peripheral Inflammatory Response in Experimental Autoimmune Encephalomyelitis http://www.jimmunol.org/content/174/9/5407.long

I'll be starting a new diary for the antalarmin if my neurologist is willing to prescribe. If it fails, I'll probably be back here at a lower dose or try amiloride. At least they aren't drugs of mass destruction. :shrug:

EDIT: ARRRGGG!!! Antalarmin isn't on the market yet. I guess it'll be amiloride afterall.
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