Author |
Topic: Nero Visit, New Meds jcmquix (Read 830 times) |
|
jcmquix
New Board Hall of Famer
 
Gender: 
Posts: 738
|
 |
Nero Visit, New Meds jcmquix
« on: Jun 30th, 2005, 3:00pm » |
 Quote  Modify
|
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 !!!!!! 
|
|
 IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
marlinsfan
New Board Hall of Famer
I love this place!
Gender:
Posts: 876
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #1 on: Jun 30th, 2005, 3:42pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
 
Gender:
Posts: 6458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #2 on: Jun 30th, 2005, 4:45pm » |
Quote Modify
|
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!
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
bnfreeman
New Board Veteran
Gender: 
Posts: 165
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #3 on: Jun 30th, 2005, 11:53pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
unsolved1
Guest
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #4 on: Jul 1st, 2005, 12:20am » |
Quote Modify
 Remove
|
I took up to 1750 mg of Depakote per day with no luck.
Hope you have better luck
Unsolved
|
|
IP Logged |
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #5 on: Jul 1st, 2005, 5:32am » |
Quote Modify
|
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 !!!!
|
| « Last Edit: Jul 1st, 2005, 5:33am by jcmquix » |
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #6 on: Jul 1st, 2005, 7:19am » |
Quote Modify
|
Feel good my friend!
SHHHHH don't wake it up
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #7 on: Jul 2nd, 2005, 9:18am » |
Quote Modify
|
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..
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #8 on: Jul 2nd, 2005, 1:45pm » |
Quote Modify
|
on Jun 30th, 2005, 3:00pm, 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
|
| « Last Edit: Jul 2nd, 2005, 1:48pm by burnt-toast » |
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #9 on: Jul 2nd, 2005, 9:46pm » |
Quote Modify
|
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 !!!
SUPPORT OUR TROOPS
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #10 on: Jul 2nd, 2005, 9:59pm » |
Quote Modify
|
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
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #11 on: Jul 2nd, 2005, 10:42pm » |
Quote Modify
|
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.. 
Told me I needed an EKG, ???
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.. ??  
If they take blood all they are gonna get is Code Red Mt.Dew.. 
PFDAN to ALL!!!
< I like this guy ..
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
don
Guest
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #12 on: Jul 2nd, 2005, 11:35pm » |
Quote Modify
Remove
|
I'll say this. Sounds like you found an excellent Doc!
Who is he?
|
|
IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #13 on: Jul 3rd, 2005, 2:01am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #14 on: Jul 3rd, 2005, 6:41am » |
Quote Modify
|
I stand corrected.......
Nurse Lizzie to the informational rescue
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #15 on: Jul 3rd, 2005, 9:37am » |
Quote Modify
|
on Jul 3rd, 2005, 2:01am, 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
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
maffumatt
Guest
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #16 on: Jul 3rd, 2005, 12:06pm » |
Quote Modify
Remove
|
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.
|
|
IP Logged |
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #17 on: Jul 3rd, 2005, 1:36pm » |
Quote Modify
|
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!
|
|
IP Logged |
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #18 on: Jul 4th, 2005, 7:44am » |
Quote Modify
|
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.
HAPPY JULY 4th TO ALL
PFDAN to ALL !!! Thanks for all the input ..
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
Kevin_M
CH.com Alumnus
New Board Hall of Famer
withered branches grow green again.
Gender:
Posts: 6184
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #19 on: Jul 4th, 2005, 8:28am » |
Quote Modify
|
on Jul 4th, 2005, 7:44am, 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
|
| « Last Edit: Jul 4th, 2005, 8:32am by Kevin_M » |
IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #20 on: Jul 4th, 2005, 8:50am » |
Quote Modify
|
jcmquix -
Remember to discuss the recommended blood work with your doc. as well. Keep your long-term health in mind.
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
cazman
New Board Veteran
if ya dont like it take a walk
Gender:
Posts: 223
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #21 on: Jul 4th, 2005, 10:38pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #22 on: Jul 5th, 2005, 6:41am » |
Quote Modify
|
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 !!!!!
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #23 on: Jul 6th, 2005, 11:49am » |
Quote Modify
|
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 !!!!
|
| « Last Edit: Jul 6th, 2005, 11:50am by jcmquix » |
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Nero Visit, New Meds jcmquix
« Reply #24 on: Jul 6th, 2005, 4:20pm » |
Quote Modify
|
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.
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.
I just hope I can get somewhere with them tomarrow, or I am just gonna dump them and search for a new Nero again.
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.
Making me 
Well I am ready for tomarrow 
Keepin up the GOOD FIGHT
PFDAN to ALL !!!!
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss