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MikeE

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Pain Free in 4 days something new
Feb 28^th, 2017 at 10:17am

Hello Friends, I thought I should share this because it sure helped me and Lord knows I have used this site to gather weapons for the beast many times over the years. I am 50 and have had episodic ch for 18 years. I usually get hit in the spring and fall and they usually last from 6 to 10 weeks..recently in the middle of an cycle I had the great fortune of coming down with shingles..yeah just when you thought it couldn't get any worse,Wrong...while shingles are just a mild irritation compared to ch I still wanted to do what I could to slow the scaring..I went to family doctor and he said ch and shingles are both nerve related wouldn't it be something if this treatment of Valtrex helped your cluster HA..Doc gave me 10 day supply of Valtrex 1000 MG three times a day...Much to my surprise on the 4th night I went from my regular routine of 3 to 5 hits to sleeping soundly..woke up clear as a bell..no shadows, nothing ...I thought well cycle ended clean this time that's different...but at the end of my 10 day treatment the 11th night beast came back with a vengeance..Doc and I thought maybe Valtrex did work let's try 10 more days..sure enough after day 4 ( which was 2 days ago) the clusters stopped again..now 2 days PF ..I was getting hit day and night anytime I tried to relax,6 to 8 hits a day to Zero..so there you go..food for though..are clusters and shingles related? Will Valtrex help others? The only other med I'm on is verapamil 360mg a day and was on it for 8 weeks before shingles started..I was aborting with o2 and imitrex injections..I sure hope it works for someone else..PF to all

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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: Pain Free in 4 days something new Reply #1 - Feb 28^th, 2017 at 12:58pm Hmmm...trex....valtrex, imitrex? Connection? I don't know. Might have to Google it.
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MikeE CH.com Junior Offline Posts: 47 ky Gender:	Re: Pain Free in 4 days something new Reply #2 - Feb 28^th, 2017 at 2:09pm Imitrex is a triptin..Valtrex is for shingles and herpies antibiotics not same family
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MikeE CH.com Junior Offline Posts: 47 ky Gender:	Re: Pain Free in 4 days something new Reply #3 - Feb 28^th, 2017 at 2:29pm The pattern is ch is a nerve in your brain going haywire..shingles are nerves on one side of your body going haywire and breaking out into a rash..Valtrex calms the inflammation and aggravation of the nerves and the rash goes away..consequently calms the nerve in your brain..
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Peter510

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Re: Pain Free in 4 days something new
Reply #4 - Mar 1^st, 2017 at 6:52am

Mike,

Thank you for sharing this. It is an interesting one that I have never heard of before and will do a little research on.

We don't always know why something works for some people and not for others, but that shouldn't stop us from opening a discussion on it.

As the song says, "whatever gets you through the night".

One thing I do know is that there are no two Clusterheads the same.

Peter.

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« Last Edit: Mar 1^st, 2017 at 6:53am by Peter510 »

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Batch

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Re: Pain Free in 4 days something new
Reply #5 - Mar 1^st, 2017 at 10:01am

Mike, Peter,

I found this interesting as well. Valtrex (Valaciclovir) is an antiviral used to treat herpes simplex, herpes varicella-zoster (shingles), and herpes B. Its mechanism of action takes place at the molecular DNA level where it prevents the herpes virus from reproducing by adding a bogus sequence of genes that make the varicella-zoster virus unviable after reproduction.

As a side note, I've found vitamin D3 is effective in stopping the spread of the herpes zoster virus. My vitamin D3 status with a 25(OH)D serum concentration around 90 ng/mL, did not stop the varicella-zoster virus from breaking out of my dorsal root ganglia where it had been hiding dormant since a childhood case of chickenpox at age 5.

However, as soon as I recognized the shingles symptoms, stiff neck and paresthesia along the lateral supraclavicular sensory nerve (I studied anatomy in college) that serves the upper chest along the collar bone to the tip of the shoulder, I started taking 50,000 IU/day vitamin D3.

I took the first 50,000 IU at midnight and six hours later, the symptoms were completely gone. I continued taking 50,000 IU/day vitamin D3 for the next four days. There was no outbreak of the shingles lesions/rash nor any postherpetic neuralgia (lasting pain after the shingles rash clears).

Back to the association of taking Valtrex and a cessation of CH symptoms... We clearly need more information.

Mike, if you are game, are you a chronic CHer or episodic? If episodic, where in the "normal" episodic cycle did the cessation of your CH occur? For example, if you experience a classic 6 to 8 week episodic CH cycle, in which week did the cessation of CH occur?

Were you taking any other CH medications like verapamil.

We also need to know if you remain CH pain free so please keep us posted.

In looking through a number of studies over the last few hours, it appears there may be a mechanism of action where Valtrex (Valaciclovir) down-regulates CGRP, Substance P, or the prostaglandins, all of which are elevated during the pain phase of CH and migraine. That's just a SWAG at this point.

Take care,

V/R, Batch

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MikeE

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Re: Pain Free in 4 days something new
Reply #6 - Mar 1^st, 2017 at 12:53pm

Batch,Peter,
Thanks for your interest..My doc sure thinks there is something to it .He is calling some friends at the medical university here in ky to see if they would like to do a study ..Batch I am episodic usually 2 cycles a year lasting from 6 to 12 weeks..I guess I was mid cycle when the first Valtrex worked and as soon as I ran out they came back ...what is interesting is when I started back on my second script it worked again..on day 4 just like the first time..I remain pain free today ,no shadows, no spikes,I have been napping and catching up on all the missed sleep with no problems..on a side note Batch thanks for all the time and effort on your vitamins..I was reading that this morning and I am almost certain it would work for me..I always said if the sun would just come out i would be fine.I work outside and play on the lake on the weekends..my cycles almost always start in rainy gloomy seasons..Thanks
Mike

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Batch

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Re: Pain Free in 4 days something new
Reply #7 - Mar 3^rd, 2017 at 12:22pm

Hey Mike,

Thanks for the reply and additional information. Two for two takes this out of the happenstance/coincidence category and takes it one step closer towards causality...

The "In Going" response time to Valtrex (Valaciclovir) of 4 days to a cessation of CH symptoms appears consistent. What we need to know now is time from last dose of Valtrex (Valaciclovir) until the CH symptoms return.

A response to Valtrex (Valaciclovir) by shingles sufferers varies between 9 and 22 days depending on age. Your response time to Valtrex (Valaciclovir) and a cessation of CH symptoms is 4 days. That may suggest a different mechanism of action.

It's all over my head at this point and I suspect we'll be shooting in the dark without some sophisticated lab tests.

Take care,

V/R, Batch

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« Last Edit: Mar 3^rd, 2017 at 12:23pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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MikeE

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Re: Pain Free in 4 days something new
Reply #8 - Mar 4^th, 2017 at 9:05pm

Batch
   The ch came back the day after I stopping the first 10 day supply of valtrex..ch stopped on 4th day into the second round of valtrex and today I am still pain free and still on it..in 5 days I will be trying to taper off valtrex and see what happens..in my experience it works a lot like prednisone without the side effects and is much easier on your body.. I wish it would work on others because on day 4 my head was clear as a bell..both times..
                                 PFDAN
                                       MIKE

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MikeE CH.com Junior Offline Posts: 47 ky Gender:	Re: Pain Free in 4 days something new Reply #9 - Apr 21^st, 2017 at 9:44am Just wanted to share that I am still pain free and I am now on the anti inflammatory regime..my level of d3 was 90 yesterday . In my mind the valtrex stopped the ch cycle and I am staying on the anti inflammatory regime to keep the beast at bay..hope this helps someone PFDAN Mike
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: Pain Free in 4 days something new Reply #10 - Apr 23^rd, 2017 at 1:00pm Mike, What you're planning sounds like a great course of action... I'd stick with the anti-inflammatory regimen year round. I've been on it constantly since 10 October 2010... Take care and please keep us posted. V/R, Batch
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Multivitamin

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Re: Pain Free in 4 days something new
Reply #11 - Apr 30^th, 2017 at 3:34am

Interesting. My attacks went down from 8 per night to a single one every morning since 3 weeks and the single attack doesn't even require treatment with o2 anymore (it's gone after 10 minutes and does not even go beyond a Kip 1)

I think there is some down regulation / stronger immune response in place due to upped d3 levels after the regime loading and maintenance as well as reducing food induced side reactions as I stay on a non sugar / diary / wheat / meat diet besides. Pain is not breaking through but still there.

I also had my gut biotics checked (stool probe) and my doctor was alarmed because there was *no* presence of e.coli bactaria (those are very important for the immune system). - also low presence of lactobacillus. Got some pro biotics now.

-however-

Since the attacks went away after d3 dosing and diet adjustment , my upper lip is tingling like crazy since weeks. Started when the attack frequency went down. I never had "herpes" in the sense of having a visible herpes if you know what I mean. I still think it's some kind of herpes based on how it feels. My body fights something, I definitely know this.

I try to discuss this with a doctor and may give valtrex a chance (I'd it's herpes that tries to break through)

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Batch

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Re: Pain Free in 4 days something new
Reply #12 - Apr 30^th, 2017 at 12:12pm

Hey Multi...

I had a brush with shingles last August while fishing in Alaska. I say "brush" as vitamin D3 did not prevent the shingles varicella-zoster virus from breaking out of my dorsal root ganglia where it had been hiding for over 67 years... I'm 72...

That said, my immune system, bolstered by a daily intake of 10,000 IU vitamin D3 and the cofactors along with a 25(OH)D serum concentration around 80 to 90 ng/mL, prevented the spread of the shingles varicella-zoster virus infection down my lateral supraclavicular sensory nerve (C3 C4) across my upper chest from the collar line to the tip of my shoulder.

My problem was I only had enough vitamin D3 with me for 10,000 IU/day during my stay in Alaska... Not enough for a 50,000 IU loading dose...

The few symptoms of shingles I did experience included a mild paresthesia (possibly the tingling/light prickling on your upper lip) and stiff neck. These symptoms continued to increase in intensity for three days until I returned home.

I took a 50,000 IU loading dose of vitamin D3 as soon as I walked through the door into the house... That was around 10:30 PM. I woke up at 06:00 the next morning and all symptoms had stopped completely. I continued the vitamin D3 loading schedule taking 50,000 IU/day for the next 4 days.

There was never any pain on the skin across my chest, no outbreak of the shingles rash and no postherpetic neuralgia.

Another lesson learned and wonderful addition to the growing list of disorders prevented or treated with vitamin D3 at therapeutic doses ≥ 5000 IU/day.

The takeaway from this discussion... I'd try a 50,000 IU loading dose for a day or two... If the tingling stops... It might be shingles... See your PCP...

Just be aware the Standards of Care recommended treatments include antiviral medicines, such as acyclovir, famciclovir, or valacyclovir if the infection is caught soon enough... After that most shingles sufferers are in for some heavy sledding... Topical Lidocaine 4% may help with the pain... then there's capsaicin creams or ointments...

I watched my wife go through an outbreak of shingles on her upper arm 10 years ago and felt helpless... None of the above Standards of Care treatments worked for her as it wasn't until we saw the rash that we went to see her doctor...

Today, there's no doubt in my mind that a loading dose of vitamin D3 at 50,000 IU/day for 3 to 5 days is a far more effective treatment.

As you can imagine, i read a lot of studies related to Vitamin D3 or Cholecalciferol. There are several studies concluding an improved immune system response aided by large doses of vitamin D3 proves effective in limiting the duration and progress of varicella-zoster virus infections.

Take care and please keep us posted.

V/R. Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Multivitamin

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Re: Pain Free in 4 days something new
Reply #13 - Apr 30^th, 2017 at 1:09pm

Thanks Batch that's interesting - I do have a stiffier neck since the tingling started as well, on bad days I run around with a heat plaster between shoulders and neck all day long. I thought it was office desk / posture related.

If I stretch my upper lipp is see lots of tiny white dots on the upper rim. That's the area where it tingles and buzzes (not visible without stretching). Google says multiple things, not helpful.

Gonna see a dermatologist soon. It's really weird I never had this before for so long. I only get this tingling usually when a bad cold virus hits me the next days but then the tingling subsidies. It lasts for weeks now (and no cold / flu)

As said I feel my body keeps fighting something off and d3 supports not letting it through. Might be related to why my cycle also doesn't want to end. (Immune system too busy keeping other stuff at bay ?)

I try the 50k loading with cofactors tomorrow, had my 20k dose this noon already.

Thanks !

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