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Thank God for this site (Read 5375 times)
coachmule
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Thank God for this site
Oct 10th, 2012 at 12:18am
 
I have been suffering for 3 months now with Cluster headaches,it is terrible and worse yet started on my 50th birthday.  The Neurologists started meds for me today,I can't bare the pain,can't sleep,eat,nausea,pain in my eye,so glad people out there realize that i"m not crazy.  I pray this episode passes with the steroid medicine.  I will pray for all of you that suffer. Cry
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JLoveRee
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Re: Thank God for this site
Reply #1 - Oct 10th, 2012 at 3:09am
 
I am new here myself, and I am just trying to soak up all the information available now. 
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BarbaraD
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Re: Thank God for this site
Reply #2 - Oct 12th, 2012 at 6:40am
 
Ok, kiddo's.. let us know what you're doing?  Inquiring minds need to know these things. Sorry you're here, but glad you found us. We're here to help and we DO understand where you are and what you're going thru...

Most of us SWEAR by O2 (read up on it). Used properly (high flow rate with the RIGHT mask) it works for most of us to abort a hit in a few minutes.

I've been here since '98 and still come here every day to see "what's new" so READ READ READ... you've got a lot of catching up to do.

Again welcome to Clusterville..  Kiss
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Re: Thank God for this site
Reply #3 - Oct 12th, 2012 at 7:52am
 
Welcome coach. What a terrible 50th birthday present. But I can't think of any time that would be good to discover you have this affliction. Assuming the steroid is prednisone, or methylprednisone, it can interrupt a cycle, and sometimes even stop a cycle, but its greater use is as an intermediate med while a longer term preventative is taking hold. Something like topomax, or verapamil, or lithium. That kind of thing. Sumatriptan injections are also helpful for the stubborn attacks, but as Barbara wrote, O2 is your best abortive. Read up on it at left and ask any questions you might have. In the meantime, God bless, and may you find good interventions soon. blessings. lance
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Re: Thank God for this site
Reply #4 - Oct 12th, 2012 at 11:07am
 
Don't mean to alarm you but.....I need to alarm you. Prednisone is a GREAT transitional med. We call it a transitional med because it's great for a short term break from attacks. For a VERY small percentage of CH'ers,a pred taper can actually halt a cycle. For the vast majority, it provides only a break as long as you are on it. As soon as you go off,beasty tends to roar back with a vengeance making up for lost time.

I menon that for two reasons. Is your doc starting you on a preventative med while you are on the pred? Verapamil, Lithium, Topomax? More critically, do you have a home oxygen set up yet? Get it NOW while the pred is in your system. If the pred breaks the cycle, you never use the oxygen, return the set up you're out a few bucks. If beasty roars back after the pred is done, you have the oxygen on hand to slay the beast. I kill my attacks in about 6-8 minutes just huffing 02. You REALLY need to get it on hand now.

Joe
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Re: Thank God for this site
Reply #5 - Oct 12th, 2012 at 3:24pm
 
Good to meet you but I'm sorry is has to be because of this horror. Pay close attention to these people. They know their business.

This is one place though where people really do know the level of pain and scary crapola that this thing brings.

Charlie
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coachmule
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Re: Thank God for this site
Reply #6 - Oct 20th, 2012 at 12:40am
 
Thanks everyone,Yes I have been reading like crazy...Ordering 02 next Monday.  I'm on Prednisone and Gabapentin 300mg.  I also have redbulls in the fridge and am taking B-12.  My friend said her Dad had this and took injections for low Testosterone.  getting mine checked next week.
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BarbaraD
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Re: Thank God for this site
Reply #7 - Oct 20th, 2012 at 10:44am
 
Haven't had many good results with Gabapetin (a few but not many). Have you seen a neuro? That's the FIRST step in getting help.

O2 is the best abort for most of us (a can of Red Bull at the onset helps a lot for "most" of us).

Don't know about the B12 (I believe in that stuff for other things so it may be of help.. who knows). Check out Batch's vit D regimen.. that is helping a lot of us.

But FIND a neuro who knows something about these things.

Keep us informed.. We CARE.. Kiss
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Re: Thank God for this site
Reply #8 - Oct 20th, 2012 at 2:30pm
 
Sorry you had to go lookin for a group like us...but as others have stated...glad you found us! You will learn much from this group, who opens their hearts and much of their personal lives to assist a fellow sufferer. Sounds like you are right on top of some of your treatment already.  Good for you! 

This is the site where you realize that you are not alone in this battle.  Where you learn that you really aren't crazy and it's not all in your head.  (Well, your not making it up anyway. Cheesy )  Where you get support, encouragement, friendships, and information.  (and lots of it)

Welcome!
Beth
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coachmule
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Re: Thank God for this site
Reply #9 - Oct 27th, 2012 at 7:48pm
 
Well I agree the gabapetin isn't doing anything except the negative side effects,numb hands and hot flashes all night.  Its really starting to affect my relationship with my girlfriend ,I think I will ask her to take a break because it drags her down and I don't want her to suffer because I'm suffering.  I am desperate, people can see this all over my face,I'm in pain all the time this crazy pressure on my lobes is making me crazy.  I am on a HMO and I cant see my nero again until November 8th.  I'll get oxygen then.  I'm very depressed from this disease,healthy guy for 50 years and now this,what did I do to get this?  I am having very depressing thoughts if I have to live with this forever.  The pain is unbearable.
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Re: Thank God for this site
Reply #10 - Oct 27th, 2012 at 8:52pm
 
Quote:
The Neurologists started meds for me today

 
I'm on Prednisone and Gabapentin 300mg.


the gabapetin isn't doing anything except the negative side effects


Basically, on Oct. 10th your neuros sent you away without any abortives, an ineffective preventive med, and now the Prednisone has wore off.  I would not understand how they could be so confident a new preventative would work for you that you would not need any abortives.  Truly amazing.  If they knew clusters they would know the consequences when the pred wears off. 

Maybe you can call them with feedback, let them know you have an appointment Nov 8th, but tell them this:

Quote:
I am having very depressing thoughts if I have to live with this forever.  The pain is unbearable.



Ask if they have any Imitrex samples in the meantime, or if they will simply call you in a script until you can see them again.  Even ask if you can pick up an oxygen script, but let them know you are suffering until you can change preventive measures.  Zilch help and now worse than ever.

Based on this experience with them, it almost seems like a gamble they will prescribe oxygen Nov. 8th.  Begin looking into your own setup, mask, regulator, welding tank -- just be ready.
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BarbaraD
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Re: Thank God for this site
Reply #11 - Nov 1st, 2012 at 12:56pm
 
What Kevin said... sounds like you need a NEW neuro.. Check out the neuro's in your HMO and check them out... Ask questions and know what you're talking about when you visit.

One thing we've learned from experience... YOU have to be your own advocate with this CH stuff.. YOU have to know what to do for it and YOU have to insist on the RIGHT treatment for it. Most docs really don't know much about it -- not really their fault   - they just aren't taught much about it in med school and don't see that many CH patients. YOU have to educate your doc.. and YOU have to find one that educatable.. (sometimes you have to go thru several to find one that CAN be educated).

But there's no sense in hurting when there is help available.. We all react differently to different meds and what works for one of us just might not work for you, but eventually we all find our magic formula and start being "human" again. This just takes trial and error, but it is out there.

Now as to the O2... CALL and get a script for it or go to the welding place and get some and get the rig and start using it NOW!

Read up on the prevents that have worked for others and go to the doc prepared with your list of prevents and aborts (imitrex is the drug of choice around here BUT the pills don't work - get the injections or nasal spray).

And we don't KNOW why it this horrible thing hits us.. it just does.. and we learn to live between hits. And we're all here to support, help or kick rear whichever comes first... but everyone on this board UNDERSTANDS where you're coming from cause we've ALL been there or ARE there.. So hang with us and we'll do what we can to help you...  Kiss
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coachmule
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Re: Thank God for this site
Reply #12 - Nov 4th, 2012 at 4:14am
 
Thanks for the kind words,two weeks ago I would not have thought about going on with this pain.  If not for all of you well who knows what I would have done.  OK here's what I do now.  02 yes everyday twice a day for 6 minutes.  Imatrex  UGH I take it but it turns me into a zombie pill formula.  I have figured out that many of us have a serotonin deficiency and so I now am on B-12 B super complex,st. johns wort liquid,vitamin C,magnesium,ginkgo and lastly stay hydrated a Dr. I played golf with said that they will bring on an attack because the vessels in your brain constrict..I know this too be true.  Finally to all of my CH friends I thank you.  I see my nero on the 8th I will beg for the shot formula of imatrax.  Good luck my friends... Smiley
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BarbaraD
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Re: Thank God for this site
Reply #13 - Nov 4th, 2012 at 7:03am
 
Read up on Batch's D3 vitamins. They're working pretty good for me.

My prevents are zonagran and trazadone.. others here use lithium (didn't work for me, but others have had good results with it). 

WHEN you get the imitrex injections read the advice on just using PART of the injection for a hit. We've found out that it doesn't take the whole shot for CH (don't know WHY). Most of us can make ONE shot go about three.

Also there's the Imitrex nasal spray. It seems to be working pretty well for me (if you can't endure the shots). It's easier to carry with you and you don't get the "funny" looks when you snort a hit of it like you do when you poke a needle in your arm or leg. (And trust me - I've gotten some pretty strange looks back before they got the injectors when we had the regular syringes.. I've "shot up" on airplanes, in meetings - whatever.. I'm not the least bit shy when I'm hurting and don't give a rip what anyone thinks.. but that's just me).

Just make sure you've got the RIGHT mask for the O2.. that makes all the difference in whether it works..

Kiss
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coachmule
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Re: Thank God for this site
Reply #14 - Nov 13th, 2012 at 12:08am
 
OK saw the doc on the 8th,he actually listened and wrote down the web site for other patients.  Yes 02 at the house and job now.  Shots of Imatrax YAY...all my blood tests came back out of whack, never in my 50 years have I had bad blood work that wasn't normal, now everything's out of whack..RED,white,B-12,thyroid,acid,I don't know what the hell happened to me.  Never ever took recreational drugs ,exercised regularly,never smoked and drank occasionally.  I am so thankful for this website you all have saved my life.  I know I can at least manage this and hopefully it will pass someday.  I now have 3 cases of REBULL in my house going to buy stock...LOL...Thank you everyone for the advice..I see my primary on the 26th may kiss her because she sent me to a nero that at least admitted he didn't know but listened to all of you and yes I printed out pages from this forum.  Keep up the great work. Smiley

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BarbaraD
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Re: Thank God for this site
Reply #15 - Nov 13th, 2012 at 7:04am
 
Glad you're getting some help. Now stick with us and let us know how you're doing.

But trust me... the banana peel doesn't work.. Smiley You can tell your neuro to forget that one.. (My late husband came up with that one and I was desperate and tried it!)

Serious.. keep us posted.. and we're glad you're doing better.  Kiss
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coachmule
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Re: Thank God for this site
Reply #16 - Nov 19th, 2012 at 11:00pm
 
OK Dr. update, he put me on Verapamil its for high blood pressure which by the way I don't have.  I was told it may open the vessels to your brain and help to eliminate the headaches. I now have the shots I will try the trick to make it last 3X longer.  The redbull in the morning helps,but honestly lately its been a tough week.  The attacks have been tough ,but I deal with it and try to focus on the good in my life.  I'm done asking why,I guess God has a plan for me,I am drinking so much water now its crazy,I will say that 20mg of melatonin and a zanax lets me sleep thru the devil.  When I wake up though, he's there to remind me that he's still there.  My kids have come to this site and worry that many of us just don't want to continue,but I have 3 great kids and look forward to a lot of grand kids.  I'll be damned if it stops me from living my life.  I am thankful that you are all here,you have truly saved my life. 

Sunday morning I could have quit, at my girls house no meds and was able to rally with ,water ,redbull,lots of migraine medicine,and a quick trip to my office for 02.  My daughter brought me some meds and I was off on a long hike with the kids.  Be strong and thank you all.  Net Dr. visit is Wednesday.  I'll keep you posted.
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coachmule
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Re: Thank God for this site
Reply #17 - Dec 29th, 2012 at 2:44am
 
Update,wow when I read my past posts I know the pain was killing me.  I'm now back on the prednisone,the doctor said I was acute a nice way of saying I may do something stupid.  I am on 240mg of verapamil high blood pressure meds.  Listen the steroids work if only for a while I feel normal again.  Talked to my MBA counselor at college I told her I was quitting the program she asked why I told her I have an affliction shes never heard of called cluster headaches,she started to cry her husband has them I asked her when did he try to kill himself she said six months ago.  He was getting bad advice hooked him up with my neuro and gave him this web site.  He is now doing much better thanks to all of you.  You might not think your making a difference but you are for somebody. Wink Wink Wink Wink Wink Wink Wink  Remember 02 lots of 02 red bulls and migraine pills in the morning.  God bless all of you....First one to a cure wins...
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Re: Thank God for this site
Reply #18 - Dec 29th, 2012 at 8:40am
 
More stuff to take to your doc! Your verapamil dose ismon the low side with some going as high as 960 mg a day to get relief:

A widely used protocol. Your doc will recognize the source and author:

Headache. 2004 Nov;44(10):1013-8.
 

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented


Also, read this link. With over 70% showing positive results, and it's healthy for you even without CH!

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Re: Thank God for this site
Reply #19 - Dec 29th, 2012 at 11:01am
 
Hey my friend!
So sorry you had to find us but as others have said glad you did cause you have found not only the best most informative place but with some absolutely incredible people who will stop at nothing to see you through to being pain free and control your CH. I for one after 37 years of being chronic was helped by Batches D3 regimen and have been Pain free for about 70 days now so that's always worth a shot but as others have said also you MUST have a good Neuro that specializes in headache disorders to properly help you and you need to understand whats happening in the CH world as far as medications are concerned because if you don't read up on these meds you will have a one sided conversation with your doc so be prepared to learn and know MORE about CH than your doc does then it will be a partnership to get you to where you need to be!! You have alot of new friends many more than you will ever know so take advantage of this place called "Clusterville" and read read read!! Knowledge is power!!......Johnny  Wink
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Re: Thank God for this site
Reply #20 - Jan 1st, 2013 at 5:24pm
 
Amen to that! Been thanking God for this site for 10 years.  Wink
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Re: Thank God for this site
Reply #21 - Jan 8th, 2013 at 12:06am
 
Verapamil has terrible side effects for men if you know what I mean.  Now my head hurts and well I have a side effects that I dread.  I will see a pain specialist on Wednesday morning,Nero on Wednesday afternoon.  I also have been diagnosed with chronic migraines I hate my life.  I will try everything that you guys suggest D3,B-12, 02.  37 years of this is not going to happen to me. Angry  The pain specialist wants to start botox treatments for the migraines.  I go to a acupuncturists too.  Thanks for everyone's input I am thankful everyday for you guys.  I pray everyday for all of you.  Curious how did your attacks start?

I work in a casino smoke filled environment,I don't smoke,healthy guy,very moderate drinker,no medical problems,no high blood pressure,nothing I got mine during SEX yes during sex I thought for sure I was having a aneurysm my cousin died last year of a brain aneurysm last year 52.  I have had a constant headache for months now the only relief I get is from the steroids.  If you get a moment I would like to know how others started with this dread disease.
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Re: Thank God for this site
Reply #22 - Jan 8th, 2013 at 9:47am
 
Mine started in my teens with what I now recognize as mild CH. Back then I'd never get wake up attacks, and they didn't really have any pattern to them. By my early 20's i was officially diagnosed and getting regularly creamed!

No head trauma, no life style changes, never smoked, they just started. We've done hundreds of surveys trying to discern some common denominator for "what" starts CH, and have been unsuccesful. The current theory is you're either born with a defect in the hypothalamus, or perhaps it's injured by some sort of head trauma.

Verapamil had the same affect on me..little Elvis just doesn't wanna play. It's like it's not bad enough you give me CH, ya gotta take that away too? Cry I used lithium since the mid 80's, at 1200 mg a day blocks 60-70% of my hits with almost zero side effects.

Have you tried oxygen? It is effective on those pesky shadows too. As to the Vitamin D-3 or "Batch regimen" I FIRMLY  believe in that. Started it almost 3 years ago whern Batch first proposed it. Have adjusted it as he has changed it and have not had a cycle in almost 3 years. There's definitely something to it.

Joe
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Re: Thank God for this site
Reply #23 - Jan 23rd, 2013 at 11:21pm
 
Mine started out of the blue also at age 14 just before turning 15 and i went chronic right away ...Like Joe said i never had a reason for starting either, no head trauma, no life style changes or anything that i have been able to attribute to why they started but it took 18 years to finally be diagnosed correctly......Johnny Smiley
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Re: Thank God for this site
Reply #24 - Jan 27th, 2013 at 10:45pm
 
OK,here's' my update hope i'm not boring anyone.  First i am seeing a acupuncturists,Nero,regular MD,holistic person and get regular massages.  I read this site and others to rid myself of CH.  First thing I need to report if your a man and most that suffer are over 85% are men, go have your testosterone checked, my holistic person before ever meeting me said that i had problems with my upper back and I do and to have my T checked ..guess what it was in my doctors words dangerously low he gave me a shot immediately...the next day I felt much better not healed but definitely better.  I go for another MRI in two weeks they think I have a problem with my disks that are causing a problem with the nerve in the back of your head.  I am also waiting for approval for botox and for a block to stop the chronic pain.  Yes I suffer with CH and chronic migraine.  Lastly I had a head injury as a child I was hit in the head with a baseball bat nearly killed me blinded me for 3 months.  Not sure its the cause as it happened when I was 8 and I'm now 50.  Just passing along information.  After my next visits I will keep you all in the loop.  PS the little head is much better after the Testosterone shot...I'm just saying...Thank you God..LMA Cheesy Grin Grin Grin GrinO..
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