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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Nero Visit, New Meds jcmquix
        
(Message started by: jcmquix on Jun 30th, 2005, 3:00pm)
Title: Nero Visit, New Meds jcmquix
Post by jcmquix on Jun 30th, 2005, 3:00pm
Well I went to the NERO Dr today. We actually talked for about an hour and I told him all my symptoms. He agreed that I had CH, So that was a good start.

It was about 8:30am in his office, I started to get a shadow that I had a HA coming on, he had me take a Repalx 40mg pill, I did not get a full hit and about 15 minutes later, all was good.

He told me no about doing the Varapamil, told me that he wants me try DepakoteER 250mg 2x a day as a prevent, I can even take 3x a day if nescessary. Also told me he wanted me to try to use the Relpax 40mg as an abortive, instead of the TREX.

THe Dr told me he has 3 other patients on the same thing, and they are having good progress with those meds.

He told me the Varapimil & TREX have to many side effects and are a major cause of rebound HA. So we agreed that I would try DepakoteER 250mg 2x a day as a prevent, for 1 week and if I was still getting the CH, that he would let me have as much of the Varapimil, TREX & O2 that I wanted.

I also took 1 DepakoteER 250mg, before I left his office, I ask him if would help or if it would take a few days. He told me it will start working right away, that it was a non-seizure med. Well No matter, I have not gotton any HA all day so far, I am doing cartwheels right now, but I am holding my breath.

I have read alot of threads on this board, my mind is brunt from the CH and no sleep. I am wondering if anyone else is using this product at this time or have tried it in the past ?

It was just nice to actually have a Dr listen to me, and answer each question with an answer and not a question, He said it was great that I have really read up on all the treatment options, but he also told me that he had just came back from a conference on all types of HA, and one major topic of about 60 Dr's was CH syndrome.

Well my true test will be tonight, I will keep everyone posted.

PFDAN's to ALL !!!!!! [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by marlinsfan on Jun 30th, 2005, 3:42pm
Good luck. I hope all those meds do the trick for ya. I hate to say, but you should have fought for O2. It is by far the best abortive form the majority of the people here.

If you do get a headache (I really hope the preventive keeps them away), and relpax takes more than 15 minutes to abort, call your doc right away and demand O2.

O2 is safe, cheap, fast and very effective.

Keep us  posted.
PF wishes.
Jose
Title: Re: Nero Visit, New Meds jcmquix
Post by E-Double on Jun 30th, 2005, 4:45pm
What happened to the O2???????

Come on dude!!

Wish ya luck on the Depakote......you may find that you have to ramp up quite high to find it helpful...it did squat for me... and if ya feel a bit dopey.....That is a side-effect.

Good luck!
Title: Re: Nero Visit, New Meds jcmquix
Post by bnfreeman on Jun 30th, 2005, 11:53pm
When I first started using Relpax it worked great. THen the CH found a way around it. Then it was Axert. Same thing happened. Trex is the only one that works now. Glad to see  you had a doc who listened. I was going to be put on Depokote, but am on Lamictal instead. It is along the same lines of Depokote in a way. It is also used in epilepsy and also used in high doses for bipolar. I have no side effects so far. Been on it about 3 months. Good luck.

BF
Title: Re: Nero Visit, New Meds jcmquix
Post by unsolved1 on Jul 1st, 2005, 12:20am
I took up to 1750 mg of Depakote per day with no luck.

Hope you have better luck

Unsolved
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 1st, 2005, 5:32am
Well its been about 20hrs since I started the DepakoteER 250mg 2x a day as a prevent, I know its has not been 24hrs yet. But I got the best sleep I have had in a long time, I slept through the whole night, did not wake at all. I just hope it holds.

I have not had any CH in over 24hrs, I do not think its was the end of my cycle, cause just Wedneday, I was still having about 3-4 HA a day. I don't know for sure, it just hope it atleast gives me a break.

Thanks for the info from everyone.

Eric, sorry I did not push harder for the O2 yet, but he told me that if I wanted it, he will give me the script. But that my INS told him, I will have to pay 100% out of my pocket. The last few weeks here have been really tought on cash, but if I need it I will get it.

PS: My brother-in-law has a weilding shop, so he already told me he can get the O2 for me and I just pay him. So I think I won't need a script anyways. But I just found out yeaterday, when I was talking to him.. :)

Well I am still praying for everyone here to have PFDAN to ALL !!!!  [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by E-Double on Jul 1st, 2005, 7:19am
Feel good my friend!
SHHHHH don't wake it up;)
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 2nd, 2005, 9:18am
7/2/05

Well I wanted to let everyone know that I was doing real good until last night. I got a really bad visit from the BEAST at 1am, but that was good news in a way, I only had 1 visit.

As I said I got hit about 1 am, out of a sound sleep. I got up and was at about an 8 on the scale, I took a Relpax 40mg, I took the HA away. But like everyone warned me it took about 30 minutes before it kicked in my system, I was still getting hit full force when I felt the pill take effect.

I went back to bed afterwards, and slept till 8am, which is good. The other good side is that I do not have the normal shadow that I usually have, I feel really good the AM.

So I think I will be calling the Dr on Monday and asking for the O2.

I am also going to step up taking the DepakoteER 250mg 3x a day, insted of 2x a day. The Dr said I could step up if I was still getting hit, so I'll keep everyone posted.

I just want to Thank eveyone here for the Suppoprt and PM's, I do not think I could have made it this far, before I got here I really felt like giving up. But I know I can beat this thing, just gonna take some time.

PFDAN to ALL !!! I love you guys.. :)
Title: Re: Nero Visit, New Meds jcmquix
Post by burnt-toast on Jul 2nd, 2005, 1:45pm

on 06/30/05 at 15:00:29, jcmquix wrote:
He told me no about doing the Varapamil, told me that he wants me try DepakoteER 250mg 2x a day as a prevent, I can even take 3x a day if nescessary. Also told me he wanted me to try to use the Relpax 40mg as an abortive, instead of the TREX.

THe Dr told me he has 3 other patients on the same thing, and they are having good progress with those meds.

He told me the Varapimil & TREX have to many side effects and are a major cause of rebound HA. So we agreed that I would try DepakoteER 250mg 2x a day as a prevent, for 1 week and if I was still getting the CH, that he would let me have as much of the Varapimil, TREX & O2 that I wanted.

I also took 1 DepakoteER 250mg, before I left his office, I ask him if would help or if it would take a few days. He told me it will start working right away, that it was a non-seizure med. Well No matter, I have not gotton any HA all day so far, I am doing cartwheels right now, but I am holding my breath.


BOX WARNING DEPAKOTE
HEPATOTOXICITY

HEPATIC FAILURE RESULTING IN FATALITIES HAS OCCURRED IN PATIENTS RECEIVING VALPROIC ACID AND ITS DERIVATIVES. EXPERIENCE HAS INDICATED THAT CHILDREN UNDER THE AGE OF TWO YEARS ARE AT A CONSIDERABLY INCREASED RISK OF DEVELOPING FATAL HEPA-TOTOXICITY, ESPECIALLY THOSE ON MULTIPLE ANTICONVULSANTS, THOSE WITH CONGENITAL METABOLIC DISORDERS, THOSE WITH SEVERE SEIZURE DISORDERS ACCOMPANIED BY MENTAL RETARDATION,AND THOSE WITH ORGANIC BRAIN DISEASE. WHEN DEPAKOTE IS USED IN THIS PATIENT GROUP, IT SHOULD BE USED WITH EXTREME CAUTION AND AS A SOLE AGENT. THE BENEFITS OF THERAPY SHOULD BE WEIGHED AGAINST THE RISKS. ABOVE THIS AGE GROUP, EXPERIENCE IN EPILEPSY HAS INDICATED THAT THE INCIDENCE OF FATAL HEPATOTOXICITY DECREASES CONSIDERABLY IN PROGRESSIVELY OLDER PATIENT GROUPS.

THESE INCIDENTS USUALLY HAVE OCCURRED DURING THE FIRST SIX MONTHS OF TREATMENT. SERIOUS OR FATAL HEPATOTOXICITY MAY BE PRECEDED BY NON-SPECIFIC SYMPTOMS SUCH AS MALAISE,WEAKNESS, LETHARGY, FACIAL EDEMA,ANOREXIA,AND VOMITING. IN PATIENTS WITH EPILEPSY,A LOSS OF SEIZURE CONTROL MAY ALSO OCCUR. PATIENTS SHOULD BE MONITORED CLOSELY FOR APPEAR-ANCE OF THESE SYMPTOMS. LIVER FUNCTION TESTS SHOULD BE PERFORMED PRIOR TO THERAPY AND AT FREQUENT INTERVALS THERE-AFTER, ESPECIALLY DURING THE FIRST SIX MONTHS.

TERATOGENICITY

VALPROATE CAN PRODUCE TERATOGENIC EFFECTS SUCH AS NEURAL TUBE DEFECTS (E.G., SPINA BIFIDA). ACCORDINGLY, THE USE OF DEPAKOTE TABLETS IN WOMEN OF CHILDBEARING POTENTIAL REQUIRES THAT THE BENEFITS OF ITS USE BE WEIGHED AGAINST THE RISK OF INJURY TO THE FETUS. THIS IS ESPECIALLY IMPORTANT WHEN THE TREATMENT OF A SPONTANEOUSLY REVERSIBLE CONDITION NOT ORDINARILY ASSOCIATED WITH PERMANENT INJURY OR RISK OF DEATH (E.G., MIGRAINE) IS CONTEMPLATED. SEE WARNINGS, INFORMATION FOR PATIENTS. AN INFORMATION SHEET DESCRIBING THE TERATOGENIC POTENTIAL OF VALPROATE IS AVAILABLE FOR PATIENTS.

PANCREATITIS

CASES OF LIFE-THREATENING PANCREATITIS HAVE BEEN REPORTED IN BOTH CHILDREN AND ADULTS RECEIVING VALPROATE. SOME OF THE CASES HAVE BEEN DESCRIBED AS HEMORRHAGIC WITH A RAPID PROGRESSION FROM INITIAL SYMPTOMS TO DEATH. CASES HAVE BEEN REPORTED SHORTLY AFTER INITIAL USE AS WELL AS AFTER SEVERAL YEARS OF USE. PATIENTS AND GUARDIANS SHOULD BE WARNED THAT ABDOMINAL PAIN, NAUSEA, VOMITING, AND/OR ANOREXIA CAN BE SYMPTOMS OF PANCREATITIS THAT REQUIRE PROMPT MEDICAL EVALUATION. IF PANCREATITIS IS DIAGNOSED,VALPROATE SHOULD ORDINARILY BE DISCONTINUED. ALTERNATIVE TREATMENT FOR THE UNDERLYING MEDICAL CONDITION SHOULD BE INITIATED AS CLINICALLY INDICATED. (See WARNINGS and PRECAUTIONS.)

Depakote is no gem when it comes to serious side effects.

Most meds. being prescribed for CH have some side effects  but clearly some are worse than others - make sure you research all meds. being prescribed thoroughly before accepting that your doc. knows best.  If you can live with the prescription drug warnings thats your call but at least weigh the potential results of what your taking against the CHs.

Good luck finding something that work for you.  I know it can be difficult.


Tom  
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 2nd, 2005, 9:46pm
Well again today has been a good day for me, again I missed several HA's that I usually have. I am taking it one day at a time.

I failed to mention that I am going in next friday morning to see the Nero Dr, and they are going to do the EKG and Blood work up. He said its for 2 reasons, he wants to know how I am reacting to the DepakoteER 250mg 3x a day, and I did call his answering service today and left a message that I was going from 2x to 3x a day. I even got a call back and he said that was fine and that if for any reason I have a problem, go to the ER and have him paged. So I feel pretty good.

He even said that if the EKG turned out ok, he would give me the script for the O2 & Mask. So I'm a happy camper right now.

The big problem that I have is that I do not care much for the Relpax 40mg as an abortive, it took almost 30 minutes last night to work, I know it kicked in cause the HA just ceased, usually if I ride them out, they ramp up then down.

But from what I understand is that I should have had an EKG from my GP Dr this time around before I was given the TREX inj. This is why the Nero Dr gave me Relpax 40mg. Now I am wondering how true this is ?? Does anyone know the answer??

Are you supposed to have an EKG before you get the TREX or TREX inj.????

I kinda though that TREX and Relpax was the same, but I was told the Relpax is safer until I got EKG and Blood work done ??

Well I have rambled too much here, Yes I am worried about the side effects from the DepakoteER 250mg, but everything that I have taken has some side effect. The Verapimil gave me chest pains that stressed me all the time, I was worried I was having a heart attack. I do know that I can not handle the CH, without something.

PFDAN to ALL!!! Happy July 4 !!!

[smiley=headbanger.gif]SUPPORT OUR TROOPS [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by E-Double on Jul 2nd, 2005, 9:59pm
Triptans are triptans!!!!!!!!

Some just take longer to take effect than others and stay in system longer.

Explanation for relpax over imitrex didnt make sense to me.....but I'm not a doctor so go figure

Feel good brother
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 2nd, 2005, 10:42pm
Sorry, This is what I mean:

I did not understand the difference. He told me the Relpax was safer till I have all the EKG and Blood Work-ups done..  [smiley=huh.gif]

Told me I needed an EKG, ??? [smiley=huh.gif]

He just told me not to mix them, TREX and Relpax.

If I did get a bad one that would not go away with the Trips to go to the ER and have them Page him.. I dunno. I think something was up when they took my BP like 4 time in 1 hour, but they never said anything. Just told me they wanna do the EKG and blood work next friday.. ??  [smiley=huh.gif] :-/ :o

If they take blood all they are gonna get is Code Red Mt.Dew..   [smiley=smug.gif]

PFDAN to ALL!!!  
[smiley=headbanger.gif]< I like this guy .. :)
Title: Re: Nero Visit, New Meds jcmquix
Post by don on Jul 2nd, 2005, 11:35pm
I'll say this. Sounds like you found an excellent Doc!

Who is he?
Title: Re: Nero Visit, New Meds jcmquix
Post by Lizzie2 on Jul 3rd, 2005, 2:01am
Ex2 - triptans really aren't all equal.  Amerge and Frova are most likely the 'safest' bet for people who may have problems with triptans as a whole.  Imitrex is the one which carries the most side effects as it works quickly with one hell of a punch - hence why most CH'ers like it!  It depends on the person and the physician, really!

Tom - yeah the black box for Depakote is bad, but......it's probably more important to list side effects rather than the adverse events/black box warning as a general indicator for side effect profiles.  Of course the black box warnings are important and everyone should know if there is a black box warning on their med and find out what that is.  However, even side effects listed for drugs are mainly listed because even if it is rare, they've gotta write it all down.

Some drug books put the % for each individual side effect.  Often, the side effects are 1-5% for certain drugs, which isn't bad on the whole!  I think the best way for someone to really approach a new med is to read all of the information, but also to ask their physician what kinds of side effects they see most commonly in their patients who take the med.  Also - asking around never hurts.  However, since side effects are so individual from person to person, it usually doesn't make sense to avoid just trying a potentially beneficial med because of the side effect profile.

Of course, there are exceptions to this!!  There are certain side effects that are not tolerable, especially depending on what other conditions the person may have.  I've had a bunch of side effects with various meds (including depakote), but I've only ever said no to trying 1 med based on side effects, and that was Keppra.  Generally I try them and come off if the side effects bother me.

Of course it is always good to exercise caution with meds like depakote, but I don't think the black box or side effect profile necessarily means it's a bad drug.

With depakote, I had to come off ultimately due to sleeping all the time and acid reflux.  However, in addition to that, I also got very puffy and my hair fell out.  So I definitely know the power of the side effects of Depakote, but at the same time, it one of the only meds that helped my chronic daily headache.  If it weren't for the side effects I experienced, I'd take it again!  The IV form temporarily raised my LFTs, but they reverted back to normal pretty quickly.

Just wanted to present the other side of reading the black box warning!

Lizzie :)
Title: Re: Nero Visit, New Meds jcmquix
Post by E-Double on Jul 3rd, 2005, 6:41am
I stand corrected.......
Nurse Lizzie to the informational rescue :)
Title: Re: Nero Visit, New Meds jcmquix
Post by burnt-toast on Jul 3rd, 2005, 9:37am

on 07/03/05 at 02:01:35, Lizzie2 wrote:
Tom - yeah the black box for Depakote is bad, but......it's probably more important to list side effects rather than the adverse events/black box warning as a general indicator for side effect profiles.  Of course the black box warnings are important and everyone should know if there is a black box warning on their med and find out what that is.  However, even side effects listed for drugs are mainly listed because even if it is rare, they've gotta write it all down.

Some drug books put the % for each individual side effect.  Often, the side effects are 1-5% for certain drugs, which isn't bad on the whole!  I think the best way for someone to really approach a new med is to read all of the information, but also to ask their physician what kinds of side effects they see most commonly in their patients who take the med.  Also - asking around never hurts.

Lizzie :)


Lizzie - I just wanted to highlight the fact that since most of our meds. have some kind of side effects it is best to fully understand what we're taking - You also make this point.  Our docs. are a good place to start but my Pharmacist has caught several oops from what I believe are really good docs.  I understand this because docs. are focused on treating patients and not necesarily prescription drugs/interactions/side effects.

jcmquix - what caught my eye in your original post was the fact the your doc. seemed to be up-playing the side effects of some meds. without indicating that Depakote had side effects of its own.  And didn't communicate  key short term and long term symptoms to be aware of when taking this drug - missing these could be fatal.  

Liver function testing is highly recommended prior to taking Depakote and recommended frequently thereafter for the first 6 mos.  The first 6 mos is highlighted as a period to be particularly cautious so I was suprised that you were given Depakote in the office apparently w/o this test and without mention of the frequent follow-up testing for the first 6 mos.    

I guess my point is one that I make frequently - Be an informed patient - Even the best docs. won't know everything so it's really on us to do some homework.  Given the variety of treatment options we endure to find something that works - we're probably gonna' get more education than most.

Tom
Title: Re: Nero Visit, New Meds jcmquix
Post by maffumatt on Jul 3rd, 2005, 12:06pm
Glad you found the right Doc for you. That makes all the difference. I want to relat my experiance with Depakote. I was given the same doseage as you. First my HAs went from 3 or 4 a day to around 10, all high on the Kip scale. The third day I wasn't  "right" in the head (if I ever was before) . I felt like I was seeing everything in third person, kinda like TV, or looking through someone elses eyes. Very erie. Hope it works for you though, just watch for the #rd person.
Title: Re: Nero Visit, New Meds jcmquix
Post by Lizzie2 on Jul 3rd, 2005, 1:36pm
Matt--

That sounds similar to what happened to me on prozac.  It was the strangest thing ever, and I didn't really pick up on what was happening until my mom finally said, "You have to get off this med!  You aren't yourself at all!"  Scary when that kind of thing happens!
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 4th, 2005, 7:44am
Hi all. Sorry I missed a day, but I had some personal stuff to handle yesterday, but even though it was one day I missed not being here reading and posting.

OK well I am not sure but I think the BEAST found its way around the DepakoteER 250mg, I am still getting the CH, but I only got 1 Saturday night at 1am, that was all, took the Relpax, about 45 minutes it was gone went back to bed and slept, PF rest of the night.

The daytime Hrs are doing good with the DepakoteER 250mg 3x aday, cause its stopping the CH during the day, which I was starting to have before I started this medicine.
So I am going to take it 3x a day until I contact the Dr on tuesday am.

But I did get the usual 1 am, but insted of using the Relpax last night I used my TREX inj. I used 3mg, the HA went away in about 5 minutes (God I love the TREX inj.).
The draw back is I got hit again at 3am, I did the same thing, I used TREX inj. 3mg, HA gone in about 5 minutes.

Then I got hit again at 7am, I didn't use nothing for this hit except for a Cold Bottle of water in my temple and I downed a can of Mt.Dew. The reason for this was I knew it was a rebound HA, from the TREX ing @ 3mg.

So I am going to cut the TREX inj. back to 2mg and if I get another hit I will try that. I am still new at dividing up the TREX inj. So I just got to find what works for me.

About the O2 thing, My brother-in-law is out of town till tomarrow, So there is nothing I can do yet.

I do not feel any real side effects from the DepakoteER 250mg yet, that I can tell, all my organs are still in working order, I feel my temper is not so short and as for the hair thing, shit its been falling out for the last 5yrs, Guess my brain cells are doing that not the DepakoteER 250mg. :)

I hope I did not miss anything here, except I am going to ask the Nero Dr on Tues about still using the Melatonion & Benadryl at night, I was sleeping alot better, I just do not know the drug interactions.

[smiley=headbanger.gif] HAPPY JULY 4th TO ALL  [smiley=headbanger.gif]

PFDAN to ALL !!! Thanks for all the input ..

Title: Re: Nero Visit, New Meds jcmquix
Post by Kevin_M on Jul 4th, 2005, 8:28am

on 07/04/05 at 07:44:27, jcmquix wrote:
I did get the usual 1 am, but insted of using the Relpax last night I used my TREX inj. I used 3mg, the HA went away in about 5 minutes (God I love the TREX inj.).
The draw back is I got hit again at 3am, I did the same thing, I used TREX inj. 3mg, HA gone in about 5 minutes.

Then I got hit again at 7am, I didn't use nothing for this hit except for a Cold Bottle of water in my temple and I downed a can of Mt.Dew. The reason for this was I knew it was a rebound HA, from the TREX ing @ 3mg.


Let your doctor know about this night time continuance.  For me, the day hits are the first to decrease in frequency with a prevent that is not fully working.  Your pattern at night though seems to indicate the Dep is not fully effective at that level or may not become fully effective.  
 The morning hit is when I am most suseptible, whether oxygen or trex was used to abort during the night.  When my prevent is inadequately performing, nights like your's described, are routine.


Kevin M
Title: Re: Nero Visit, New Meds jcmquix
Post by burnt-toast on Jul 4th, 2005, 8:50am
jcmquix -

Remember to discuss the recommended blood work  with your doc. as well.  Keep your long-term health in mind.

Tom
Title: Re: Nero Visit, New Meds jcmquix
Post by cazman on Jul 4th, 2005, 10:38pm
not to sound negative i think the doctors persribe what the drug companys are pushing that month relpax will stop working at some point been there done that the freaking pills are 20 bucks a piece ask him for something that really aborts like o2 they say no cause the drug companies dont get fat and rich off that just my 2 cents but anyways i hope you feel better and find reilief
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 5th, 2005, 6:41am
Well first I just want to say thanks to everyone for posting the information, it really helps... :)

Went to the fire works last night got home about 10pm, got a good hot shower, used my neck massager for about 15min, then went to bed. I did wake at 1am, with just a small shadow. I did not take anything, I got up had a bottle of cold water and it just seemed to fade away. Then the alarm wentoff at 4:30am, time for work.

I feel so/so today, just really still feeling sore from Sunday night, was a really bad night and Shadows all day till about 3pm in the afternoon.

I noticed that I did NOT take the usual nap on Monday, I seem to have a better night when I do not take any afternoon naps, which is hard for me. I usually take a nap when I get home from work and stay up a little later and Watch TV with the wife. But since this cycle started about June 1st, I just avoid the naps and try to get to bed early to start the battle, so that at some point in the night I will get a few hrs sleep.

I am going to call the Nero today, I'm just going to explain that I am having Good days, but bad Nights. I just need something to work at Night, if I can just get the sleep I need, I can beat a** on the BEAST during the day. Just at night the BEAST has me beat up before I wake up.

I am going to ask for the O2 script & letter to the Ins Comp. and I either need stronger Relpax or I am sticking with the TREX. I found with my self I can get rid of any rebound HA from the TREX if I just hold a cold bottle of water next to my head for about 10 min. ?? I really do not know how to explain the difference in the HA types, but I know when I am getting CH or just a Rebound, the rebounds a much smaller... ??

Well I hope everyone has a Good Day  :)

PFDAN to ALL !!!!!
[smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 6th, 2005, 11:49am
Hello All, Well I am still waiting on the trusty Dr to call me back so that I can get the script for the O2, but I did find a place to fill the Script and the Lady even told me how to have the Dr fill the script out, so that she can get me all the equipment that I need. She seemed to be well informed in CH, she told me she is currently serving 3 people in my area with CH. So I have everything all lined up as soon as the President (oh I mean Dr) calls me back. I think I could reach the President before I could this Dr, what a pain in the A**.

Well I asked my other Dr (The Wal-Mart Pharmisist) if I could take the Melatonion & Benadryol, with the Depakota. She said that it was ok, just to be careful with other drugs, because the Depakota has alot of bad drug interactions with them.

I got 4 hits last night, 1 really bad one that I had to use the TREX inj (only 2ml out of the statpen refill) about an hour after I fell asleep, then 3 smaller HA's through out the night, I just knew they would be light, so I had a cig & cold bottle of water and walked them off.

These things just kill me, cause they come about 2-3 hours apart. Just as soon as you fall asleep, its like the BEAST waits till you get there, then outta no where, just Kicks you in the side of the head as hard as he can. If I ever catch him, he is a DEAD BEAST.

So I am now taking:
Depakota 250 3x a day
Melatonon 9-12mg about 1 hr before bed
Benedryol 50mg about 1 hr before bed
Using TREX inj (2ml in a diabetic needle) to Abort

At night I take the meds, then get a good hott shower, then head off to bed to relax and try to sleep. I have been using a damp wash cloth to cover my eyes at night, I don't really know if it helps the CH, but it helps me to relax and thats the point.

Well I'll keep everyone posted about the O2 DRAMA &
See how the nights go. I know the Melatonon & Benadryol will help me get some sleep.

Keepin' up the GOOD fight..

PFDAN's TO ALL !!!!
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 6th, 2005, 4:20pm
Hi All, Well now I am going to see the Nero Dr tomarrow (Thurs) about getting the O2. I was supposed to go in Friday, but I kept calling & calling. It pays to be persistant.  
[smiley=bash.gif]

I guess I am also going to see their HA Dr, insted of the Nero Dr, I was just informed. Thats what I told them in the first place, but its always the same run around.
[smiley=bunnybash.gif]

I just hope I can get somewhere with them tomarrow, or I am just gonna dump them and search for a new Nero again.  
[smiley=crash.gif]

It bugs the HELL out of me they act all like, "Ohh Sorry you have CH". Then you have to go through all this BS when you ask them questions, if they act offended tomarrow, I am just going to bit my lip, get my meds.

I thought they took some sort of Creed to become a Dr, they are all worried about what my Ins Company is going to say about the O2. I really will never understand the Medical Field. Other than something that is gonna kill me, I'll take it to put this BEAST asleep for a couple of hours in the night time.

Damn just wish they could have this for only 10 minutes, so they could understand where we all are coming from, when we ask about a treatment option.
[smiley=ohjez.gif]

Making me  [smiley=gocrazy.gif]

Well I am ready for tomarrow  [smiley=bigguns.gif]

Keepin up the GOOD FIGHT

PFDAN to ALL !!!!  [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 7th, 2005, 7:39am
Well it was another one of those nights...  :-/

I was ok till about 3pm yesterday, then started getting some shadows, but I held good until bed time.

I took the Usual meds:
Depakote ER 250mg (Dr script 3x a day)
Melatonion 9mg
Benedryol 50mg
Hott Shower about 9:30pm

Got to bed about 10pm or so, well I woke at 12am. Felt like the BEAST was doing some Road Work in my head, didn't know the roads were in such bad shape.  

[smiley=hammer.gif]

So I got out of bed, grabbed to AMMO (TREX inj) and headed to the bathroom. I took 2ml of TREX, and paced to bathroom for about 10minutes, then the HA faded. (I LOVE THE TREX !!!). But my head was still so sore, It was hard to lay back on the pillow. So I got back to sleep.

At about 2 am I woke again, seems like the BEAST was still trying to get his equipment going, I got up and went to the battle ground (bathroom). I had a cig & a cold bottle of water, about 35 minutes later it just faded away. I didn't use any abortive, I am running low on Ammo (TREX inj).  

[smiley=JAW_DROP.gif] [smiley=JAW_DROP.gif]

Got up at 4:30am, had a bit of a shadow, until I got to work and had the first Code Red of the day, doing better now. My head is still sore, guess the pavement is still warm.  [smiley=frown.gif]

I think at this point I would give a week's (hell a life's pay) just to get a normal nights sleep. I'm starting to get back to where I feel  [smiley=gocrazy.gif]


Oh well see the Dr (not sure which one today), but I think I am just going to ask to go back to the basic meds (First Line Prevents) and the script for the O2, and ask for just more TREX inj, from the Dr and the Ins Company. So I will post again later.

Fight the Good Fight !!  [smiley=bigguns.gif]

PFDAN's to ALL !!!!  [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 7th, 2005, 3:27pm
Hi All quick post.

I met the HA Dr at the Nero Dr's office, WOW perfect woman, listened and gave me what I wanted... Well almost..  [smiley=smartass2.gif]

I did get the O2 script, gonna try to pick it up before 5pm, Hope no one gets in my way on the Hiway..  [smiley=bigguns.gif]

Got a couple of TREX inj samples and a new script for the Vials of TREX.. We see what the Ins Comp says.. [smiley=worried.gif]

Blood work ok, up my Depakota ER 250 to 4x a day, If not better will change next week. Also do blood work in another 2 weeks.

Post more later :)

PFDAN's to ALL !!!!  [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 8th, 2005, 6:12am
Well all went well at the Nero Dr (Thursday), I got the script for the O2. I got the entire setup. Script says:

O2 Treatment for CH
8-10LPM
Non-rebreather mask
99 months

The price I was quoted was for an E-tank setup, (which is kinda small, but when I went to pick up the rig, this is what they gave me for the price of $55.00 a month, If I want to buy it for $195.00 total. The $55 a month goes toward the purchase price, if it works for me.

I got :
2 E-tanks (the lady said that way I will not run out to fast at 8-10LPM) Refills $10.00 each.
1 0-15LPM regulator
2 non-rebreather masks
1 cart

So it turned out to be a pretty good deal.

I still have to practice with the O2 when I am getting hit, learning to remain calm until the O2 kicks in.

Warning: The Nero Dr & The Med Supply Place both warned me to start at about 6LPM until I get used to the O2, which was good advise.
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 8th, 2005, 6:27am
Hi All,

Well I had an ok night, if you can call it that, the hits were few, at least.

Took the usual meds, except went from Depakota ER 250mg to 500mg 2x a day. (1000mg total a day)

Got the usual hit at 12am, I tried the O2 first, but I had to give in to taking a TREX inj (2mg). The reason for this, is that I woke up with like an 8 on the scale, I could not sit still long enough to the O2 to take effect. I will practice more though. :) HA aborted in about 10 minutes.

Woke again at 3am, with a mild HA or Shadow, was not really sure. I got up got some water, had a cig, got ready to use the O2 again, but before I got it all going, it just went away. So went back to sleep till 4:30am, time for work.

I am feeling pretty good today, a little bit better than the last few days, I know I got some stress off by seeing the Dr & getting the O2, but I am hoping for some sort of brake in this cycle. I can hope so anyways.

Today will be the first full day of doing the Depakota ER 1000mg for a day, so I hope something starts to break a little.

I'll keep you all posted.

PFDAN's to ALL !!!!  [smiley=headbanger.gif]
Title: Re: Nero Visit, New Meds jcmquix
Post by Topical on Jul 8th, 2005, 8:44pm
I hate to say this but consider locking the trex in the cabinet and try the O2 until it works next time.

I know what you mean about having to sit there with it. It is aggravating as hell. The complete trust in O2 as an abort isn't quite there for you yet. That's why you went for the trex. I can totally understand.

Clusters are so weird how fast they go from total intensity to fading away. I always picture myself climbing a hill, finally reaching the top and coasting down. Such a relief when that happens.

Just guessing here, but I have noticed the sooner I get on the O2 the better it works. Immediately when you feel a shadow drop everything and start the O2. Even the slightest twinge of pain, get in there and start it going. If you are like me, you'll never feel the pain and wonder if in fact you were about to get a full blown HA.

It may be because you woke up with such intensity it would have taken longer to work. If it isn't working and the intensity is rising boost the LPM up.  You probably did that anyways but try to ride out a big one with O2. Look at the time it took to take effect when you were going to give up on it in favor of the trex.

I have so much confidence in O2 now I think, "Ok, I am in total pain but it should go in 5 minutes....(5 minutes later)crap, it will be another 5 minutes."  Two minutes later I am at the top of the hill and feel myself starting to coast down. That is a psychological edge that comes only after more time with any med. At some point let it bring you out an 8-10. If you can't make it and reach for the trex, again I totally understand. You do what you need to do.

The possible rebounding from the trex and it's side effects are other reasons why I am saying to put it away. It is crappy being a guinea pig when you are searching for the right abort and preventative.

Cheers to getting PF, I wish you well.  ;)
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 9th, 2005, 12:54pm
Hi all .. I just wanted to check in..

Well I had a so/so day yesterday, I started getting the shadows late in the day yesterday. I am not sure yet if going to the Depakota ER 1000mg a day, is making any difference yet, I'll give it a few more days, then I will know.

I got the usual hit at 12:30am, I woke up feeling like someone just dropped a brick on my head, I was going to do the O2, but its just too hard to manage at that time in the morning. I am like stupid, during that hit. I looked at the O2 tank, and just grabbed my TREX inj and went to the bathroom. HA gone in about 10 minutes.

Got hit again about 3am, but I was so sleepy, I did not even get up. I took 12mg Melatonion, before bed, seems like it hits me later in the night. But I slept till 7am, woke up with a small shadow, I drank a Mt.Dew and it just faded, so doing pretty good today. I am glad of that, with this Hurricane passing by us, I need to be PF.

Will be online as long as we have Power, the bad thing here is if the wind blows the power goes out.

Praying for all in the path of the HURRICANE !!

PFDAN's to ALL !!!
Title: Re: Nero Visit, New Meds jcmquix
Post by Topical on Jul 10th, 2005, 4:01am
Stay down low during that hurricane. I hope it turns into a big blow out and disperses quickly.

I got hit two times last night as I slept. First was a 5 and I sucked that O2. I could feel it start to creep up but it calmed down in about 10 minutes and went back to sleep. Second one, was much easier like a 3. I was sitting up breathing away and suddenly fell asleep for a microsecond. I easily caught myself as I was falling over on my side and wondered if I was using O2 or knock out gas!

Tonight was sort of weird. I felt a shadow and ran in and started breathing away. Less than 5 minutes the shadow retreated. Sure enough though the little bastard wanted to have another try at me. Again I went back in and knocked it down within 5 minutes.  :D

Be safe down there!
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 11th, 2005, 7:30am
Hi All..

Well we Survived Hurricane Dennis, we are praying for the People that took the hit, still waiting to hear from family at the Navy Base there... :(

I have lost complete track of my HA's this week end, I was getting them off & on so much and at different times. Sometimes we had power, sometimes we didn't.
I lost my internet connection sometime Saturday night, we were watching the news and the cable went out, then the power. We have the worst power, the people acroos the street had power, we didn't. Power came back on late Sat/Sun am, but Cable/internet still out... :(

I am trying to do the O2 during the day, when I get hit around 5pm & 8pm, as for the night right now I am still using (1/3 Trex inj) @ 1am, seems to be the worst hit, then I am getting hit about 3am, I can usually walk this one off in about 15 minutes, then head back to bed.

Still not getting any major hits during the day(Thank God) just some Shadows, some days are better than others. The Dr just asked me to stay with the Depakota ER @ 1000mg a day, until I get the Blood Work done. I do not think its doing much for the CH cycle, but its not really affecting me too much, other than I noticed that I don't get all worked up over the HA's when they come and other things, All-most like I'm just relaxed all the time. Who knows.... ??

PFDAN's to ALL !!! HURRICANES SUCK !!! :(
Title: Re: Nero Visit, New Meds jcmquix
Post by Boyce on Jul 11th, 2005, 2:21pm
Charlie.....

My advice if you still have some of those replax laying around.....is to take a 40mg relpax, 9 mg melatonin, and 25 mg benadryl right before you go to bed.....Even when I'm in roaring mid-cycle, I can still get a good night's sleep (8+ hours) on the ol' rel-ben-mel cocktail....
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 12th, 2005, 9:09am
Hi All..

Well I had another rough night, Still using :
1000mg Depakota ER 2x a day @ 500mg (Have not gotten over a 2-3 HA on the KIP scale during the daytime since starting this med.)
Melatonin 12mg @ 45min before bed
Benadyrol 50mg @ 45 minutes before bed
To bed at 10pm (any earlier to bed I get another visit from the BEAST about 11:30pm)

I got the BEAST at 1am & 3am... I had to use the TREX inj (2mg) for the 1am HA, it hit so quick & fast.. I tried for about 10 minutes with the O2 for the 3am, started to ease a bit, then the HA kicked back, I needed sleep I went ahead a did another TREX inj (2mg).. I got back to bed about 20 minutes later... Woke at 4:30 am for work, just getting really tired, not getting over a few hrs sleep each nght.

I am going to have to use the O2 I think for the daytime & weekend night hits. If I use it during the week for the HA's at 1am & 3am, I start to fall asleep while on the O2, and I start taking shorter breaths and I think it makes the HA RAMP back up...

I realized that with the O2 to be effective for me I must take deep breath's ... Then it will abort a HA in about 8 to 10 minutes for me.. but if I start to fall asleep, I get kicked in the head bad from the BEAST...

Anyone else like that.. ??

Well I am just hoping that this round will end in August sometime, but I do not know... I noticed that the HA's are alot more intense this cycle. I am just hoping I feel that way cause this is my first cycle in about 2-3 yrs.. ??

I am just tring to get through this cycle and not keep trying to figure it all out..

I'm also wondering with the Hurricanes acting up so early this year, if I will end sooner or last longer in my cycle. I know I am hurting more when a Big Storm is closer ..??? Another Crazy thing I wonder about ...????

PFDAN's to ALL !!!


Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 12th, 2005, 9:11am
Sorry that the Post I make are so long, but I am tring to put as much information as possibile to either help myself or someone else.

PFDAN's to ALL !!! Thanks for being here... Charlie
Title: Re: Nero Visit, New Meds jcmquix
Post by Topical on Jul 12th, 2005, 7:38pm
I've had O2 start to work then the HA ramps up, That's aggravating like you are sliding on icy ground and can't make progress. Some times it caps the HA and doesn't let it get beyond a 5 before it takes hold and gets rid of the HA within 15 minutes.

Another thing that can happen is you stop the O2 too fast thinking the HA has passed and then it comes on again or lingers. I always try to wait until totally PF and then after a minute will stop the O2.

If I was having an attack like you describe, I would have probably stopped the O2 and been frustrated. I would have gotten up and taken a piss or smoked a few puffs on a cig. NOT in the same room where the O2 was then continued it again. (Disclaimer...I always keep the door to my b-room closed after I start the O2. Fire scares the hell out of me. Oxygen molecules attach to objects such as bedding making it flammable area. Do not smoke in the same area where the oxygen is located,)

Anyways....taking a very short break or regrouping helps me out. Like a baseball batter at the plate. I step out of the box and then back in.

I think you may be getting frustrated, "screw this, I need to sleep", then reaching for the imitrex. I do the same thing but don't have any imitrex to reach for so it is back to the O2 with a renewed state of mind of kicking the beasts ass.

Do you think the injections may be causing some rebounds or does it match the pattern before you were on the med? An HA every 2 hours sounds suspiciously like rebounds. I know others say rebounding is less with smaller shots. But our bio-chemistry is different and we can only tell you our experiences and hope you are similar.

The best advice is to keep a log each day and talk to your doc to help evaluate your situation.

Have you set aside one or two days/nights where you don't use the imitrex at all and see if you are still getting multiple headaches? I think you may to see if you are getting rebounds from the imitrex.

Mentally evaluate the results including how long the O2 took after you would have taken the shot. Imitrex has a lot of bad effects long term. It can screw with your heart. The restrictions on it should tell you that it is a fairly dangerous substance.

I am looking at what you wrote:
"I went ahead a did another TREX inj (2mg).. I got back to bed about 20 minutes later... "
"....the O2 to be effective for me I must take deep breath's ... Then it will abort a HA in about 8 to 10 minutes for me.. "

What are you a junkie? [smiley=laugh.gif]

I thought that was funny....if I was the doc I would have went with no more imitrex.
"...but Doc, I need my TREX!"  [smiley=laugh.gif] CH isn't funny and your pain definitely isn't, lauging at is rare. Hope you got a laugh there too. Take care. Hope you get PF soon.
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 13th, 2005, 7:46am
Hi All..

Well I had a good night as far as the HA's go, I did not get anything last night. Got to bed about 11pm, woke at the usual 1am time, had a minor shadow. Got up, went to the bathroom, had a smoke and the HA didn't happen, I went back to bed about 30 minutes later... Slept till 4:30am time for work.

When I woke up this morning though, I have the STIFF neck from hell... I wonder if this is something new with the CH ?? I can not take anything yet, I am still doing the Depakota ER 1000mg a day, I need to ck with the Dr before I take anything. I can barely lift my head today, its that stiff.. :(
I usually do not get a stiff neck like this unless I had a bad night, with the BEAST.. ?? Hmmm ??


Quote:
Topical Posted on: 07/12/05 at 7:38pm
Have you set aside one or two days/nights where you don't use the imitrex at all and see if you are still getting multiple headaches? I think you may to see if you are getting rebounds from the imitrex.


I try to set aside the weekend nights Friday & Saturday nights to try and experiment : Using the O2 at night, Change sleeping Patterns & Positions, Different ways to relax before bed... Etc.. Looking for something that might get me through the night..


Quote:
Topical Posted on: 07/12/05 at 7:38pm
Have you set aside one or two days/nights where you don't use the imitrex at all and see if you are still getting multiple headaches? I think you may to see if you are getting rebounds from the imitrex.  

Mentally evaluate the results including how long the O2 took after you would have taken the shot. Imitrex has a lot of bad effects long term. It can screw with your heart. The restrictions on it should tell you that it is a fairly dangerous substance.


I have had really good luck with the TREX inj, since I learned how to divide the shots, I have not gotten any rebound HA from it. I have been using only 2mg of TREX inj, when I abort a HA. If I were to use the full 6mg shot, I think my head would EXPLODE and I would have rebound HA for a week....

As for the frequency of the attacks, they have not really changed to much (with or with out the TREX), other than I am not getting the daytime attacks that I usually get, Right now I am attributing it to the Depakota ER 1000mg a day, only cause I missed a dose one morning, and I got a visit from the BEAST that morning about 7am. Truely I do not know.???

I know what you mean about the Druggie thing, I feel like an addict, trying to find his next fixx..

I am always planning, making sure I have the TREX divided into 2mg shots, enough needles, checking my script meds and checking the O2 tank at night....

I just decided this time I was going to live my life, if I have to use the O2 somewhere, or bring the TREX on a family outing, so be it... I do not want to let this thing make me a SHUT IN CASE... If that BEAST shows his face during the daytime, I am gonna kick his A** !!!

Thanks for your Help Topical :)

[smiley=bow.gif]Special Thanks to Redd & E2

PFDAN's to ALL !!!






Title: Re: Nero Visit, New Meds jcmquix
Post by E-Double on Jul 13th, 2005, 11:49am
Valium  or Xanax......double bonus....no angst and relief from stiff muscles  ;)

Glad ya got some sleep.....My neck tweeks out a lot.....could actually because you did sleep. Never a dull moment huh.

Best to ya my man!
Title: Re: Nero Visit, New Meds jcmquix
Post by Topical on Jul 14th, 2005, 4:32am
"I just decided this time I was going to live my life, if I have to use the O2 somewhere, or bring the TREX on a family outing, so be it... I do not want to let this thing make me a SHUT IN CASE... If that BEAST shows his face during the daytime, I am gonna kick his A** !!! "

Excellent attitude bro! :)

I hope you get to those PF nights soon and slam the door on the dungeon where that monster belongs. Take care.
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 14th, 2005, 1:35pm
Hi All .. Thanks for the support..

Well I wanted to post sooner, but I have just been really busy today, as soon as I got to work..

I had my second PF night in a row in about 45 days.. I feel pretty good today, I have not had to use any TREX in over 48 hrs, at this point I am just keeping my fingers crossed.

Besides having a few small shadows and a minor stiff neck, I feel really good today. I did wake at the usual 1am & 3am, feeling a little confused and waiting on the hits to come, but they never did. (So COOL)

I am glad that I did not give up on the usual bedtime meds:

Melatonin 12mg
Benadryl  50mg

I do not know if they are directly related to this PF break, but I know I sleep better with the Melatonin and I do not wake up in the AM all stuffed up, thanks to the Benadryl.

NOTE: I am still taking the Depakota ER 1000mg a day.
All those concerned I go to do Blood work again next week, to make sure that the Depakota ER is not making my system TOXIC. I am not having any CRAZY thoughts. I also have my wife checking all my Vitial signs 2 times a day, just in case anything is changing that I do not notice.

At this point I do not think I am in remission with the BEAST, but the break is nice. If it is remission COOL.
I am going to stay on all the smae meds until I see the HA Dr in 2 more weeks.

[smiley=bow.gif]Thanks to ALL !!!! [smiley=bow.gif]

[smiley=me&mb.gif]Ya'll Have a GOOD & SAFE time in TX !!!! [smiley=hug.gif]

I miss all the action on the board though...  [smiley=gocrazy.gif]

PFDAN's to ALL !!!
Title: Re: Nero Visit, New Meds jcmquix
Post by jcmquix on Jul 16th, 2005, 8:08am
Hi All..

Well its Saturday morning, I am on my 4th night PF... I feel like doing cartwheels... I'm just hoping it lasts..

I have just been trying to get lots of sleep, while I have had the PF night & days.

I have been taking the same meds, I am not changing anything.

I still have had a few shadows, but nothing compared to the HA's that I was having. I am starting to believe that the Depakota ER @ 1000mg a day has helped me this cycle. I have never had a cycle end this way, if it is the end. These CH HA's usually last 3 months at a time, and Ramp up & then Ramp down.

As I was told before, I am not going to spend alot of time trying to figue it all out, I am going to enjoy the PF time and live my life.

I am still going to CK in daily and stick around, I do not think I can ever repay the help I received here, But I am willing to try. its nice to give & to receive the Support.

PFDAN's to ALL !!! Thanks to Everyone.. :)
Title: Re: Nero Visit, New Meds jcmquix
Post by Grandma_Sweet_Boy on Jul 16th, 2005, 8:17am
That's welcome news Charlie.  Glad to hear you're catching a break.  Enjoy the PF time while you have it.

Carol


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