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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Any CH Breastfeeders?
        
(Message started by: Tray-C on Jul 5^th, 2002, 1:15pm)

Title: Any CH Breastfeeders?
Post by Tray-C on Jul 5^th, 2002, 1:15pm

I'm new to CH. Started two weeks ago. All of a sudden I thought my head was gonna explode - honestly I thought I was about to die from a brain aneurysm. Had my boyfriend take me to E.R. (He thought I was gonna break the dashboard!!) and was given about 3 Morphine shots and some phenergan and sent me home. Next morning, pain was still present (about a 4 on Kip Scale) and so I went to the Urgent Care clinic. I thought it was a migraine cuz about 6 years ago I suffered from migraines for a year and then they suddenly went away. He gave me Stadol and Phen and sent me home. Next day we thought it was safe to go out to dinner in our fav restaurant in another city so off we went. We were there for 5 minutes and another dance with the beast began. Off to Doctors on Duty (a walk in clinic chain) and I was given Stadol and phen and two shots of a numbing drug into my shoulder/neck muscle. Next day it hit again and we went to the local Doc on Duty where I was given a stern lecture of becoming a drug adict and told to settle down and stop yelling and thrashing about cuz I'm just making it worse. I let him talk and agreed with everything he said just to get the drug, but I wanted to kill him AND had the strength to do it. Given the usual drugs and sent home. Next day (Monday) I saw my Doc who diagnosed as Cluster Headaches and prescribed Norco every 4 hours - which I took religously. Next night I was awakened exactly two hours after falling asleep by the beast and boyfriend took me on another trip to E.R., with our 3 month old baby and my 8 year old sister who had just begun a 2 week visit with us. E.R. doc gave me the stadol and Phen and admitted me for testing. All tests were fine - CT, Blood, MRI. and so began 3 days of around the clock shots of Bupernex and oral drugs of Klonipine, and Celebrex (throw in an allergic reaction to DHE). Had 1 CH mid week and then declined the Klonipine (that's the pain med) for 24 hours and asked to be released. Now I take 1200 mg Neurontin every day and with a molecular weight of 178, I can't breast feed. I carry around my emergency drug (Troche) and have had one CH which happened as soon as my head hit the water when I was showing my 14 year old how to dive (I CAN'T EVEN PLAY WITH MY KIDS!!) The Troche brought the pain level down to a 2/3

My problem?? Since this all began I've had to switch my beautiful baby son to formula and pump and dump. I'm slipping into major depression over this!!! Does any body know of any preventative meds other than Neurontin. For doc's or pharmacologists out there, I need something with a molecular weight around 600 or more.

Sorry this is so long.

Title: Re: Any CH Breastfeeders?
Post by BobG on Jul 5^th, 2002, 1:56pm

Tray-C,
Please get to a doctor that can refer you to a neurologist. From your list of drugs it looks like the doctors you have seen are in the dark about clusters.

Morphine- pain killer- no good for clusters, could make them worse.
phenergan- antihistamine- not much help for clusters here.
Stadol- narcotic analgesic- pain killer do not work on clusters DO NOT take this stuff if breast feeding!
http://my.webmd.com/drug_article/article/4046.1542?bn=Stadol%20NS
numbing drug- ????
Norco- (Acetaminophen and hydrocodone) another narcotic analgesic-
Bupernex- ? what is that?
Klonipine- do you mean Kolopin?- aka Clonazepam, affects chemicals in your brain that may become unbalanced and cause seizures.
Celebrex- nonsteroidal anti-inflammatory drugs (NSAIDs) to reduce inflammation.
Troche- what this? a medicinal preparation for solution in the mouth, consisting of an active ingredient incorporated in a mass made of sugar and mucilage or fruit base.
Neurontin- aka Gabapentin, is used to control seizures.

Click on the 'medical info' button on the left side of the board. Read, print and arm yourself with information to take to your doctor.
Good luck and let us know how it goes.

Title: Re: Any CH Breastfeeders?
Post by Becca on Jul 5^th, 2002, 2:36pm

Phenergan is an antiemetic (for nausea) and has some synergistic value when used with pain medicines like morphine and demerol. Is it an antihistamine, too? I didn't know that - it certainly will make most people very sleepy, like a lot of antihistamines will. It's really my favorite drug for the difficult patient - chills 'em right out. Of course, we only give it if appropriate - I just love it when it's appropriate...........good ole vitamin P.

Morphine has been marginally useful (we think) to my CHer hubby in the ER on a couple of occasions, but by the time he got it the attack was almost over on its own.

Title: Re: Any CH Breastfeeders?
Post by BobG on Jul 5^th, 2002, 2:58pm

You're right Becca,
Phenergan is used for nausea.

Here's what webMD syas about it.

Promethazine
brand names: Phenergan, Promethegan

Promethazine is also used to cause sedation (sleep), to assist in controlling postoperative pain, to control nausea and vomiting (especially after surgery), and to prevent motion sickness.
Promethazine is an antihistamine. It blocks the effects of the naturally occurring chemical histamine in your body.
Promethazine is used to treat allergic symptoms and reactions such as itching, runny nose; sneezing; itchy, watery eyes; hives; and itchy skin rashes.

Title: Re: Any CH Breastfeeders?
Post by Tray-C on Jul 5^th, 2002, 3:56pm

Yes, all most of those drugs were given by idiots who obviously have not researched Clusters. They were treating a migraine - and I used to have migraines - they are much different. With Migraines, one wants to be still and quiet and in a dark room. With Clusters, one CANNOT be still or quiet and screams for relief. Until I found this site, I thought my behavior was rediculous and inappropriate for any adult. Now I know it is, unfortuately, normal.

Back to the subject matter. I am only taking the Neurontin, Celebrex, and carrying around the Troche for emergencies. AND am not able to breastfeed my boy. Tonight I'm seeing the neurologist. I just found a drug with a Molecular weight of 461 (I really need to be at 600 for the drug to be completely unable to enter the breast milk) called Verapamil. I read the warning posting and am wondering which form people are on?? Is anybody using Calan SR?

Another method I am considering is going completely off the preventatives and just carrying around a Stadol nasal sprayer. That way I will only have to supplement formula for about 48 hours following a CH??

Any thoughts?

Title: Re: Any CH Breastfeeders?
Post by BobG on Jul 5^th, 2002, 4:11pm

Verapamil is probably the most used preventative. Lithium is sometimes used along with the verapamil.

Imitrex is the most used abortive.

100 percent Oxygen, 10 to 15 lpm flow rate, non-rebreather mask is a popular abortive.

With any drug be sure your doctor knows you are breastfeeding. And to be double sure type webmd into your Google or Yahoo and research the meds.

Again, click the 'medical info' button on the left side of the screen.

Title: Re: Any CH Breastfeeders?
Post by Tray-C on Jul 5^th, 2002, 5:13pm

I've read the medical information.

I've also just finished MORE research including a conversation with a lactation consultant.

Verapamil has a molecular weight of 491. I thought I needed to hit 600, but I only need to get over 200, so I'm good there. It has a plasma protein binding score of 94%. The higher the better, so I'm good there. It has a Lactation risk of L2 - the lower the better; score another. It's recommended by the Accadamy of Pediatrics as a safe Breastfeeding drug. Need I say more?

Imitrex has a molecular weight of 413 (very good), but Plasma protein score of 4% (very bad). However, it has a half life of 1.5 hours so I can either BF 2 hours later or just pump and dump to be safe. It's lactation risk is L3. The scale is L1-L4.

I'm going to ask my doc for a RX of Verapamil and Imitrex.

;D

Title: Re: Any CH Breastfeeders?
Post by Tray-C on Jul 6^th, 2002, 11:37pm

Doc said no to Verapamil. Apparently with my size, and the fact that my blood pressure is a little on the low side anyway, Verapamil is not for me. With the dosage I would need, I would faint everytime I stood up.

There is an alternative, but I have to see a doc at Stanford.

So yesterday I began to taper off my neurontin and was awakened with a CH at 6:30 this morning. Have been battleing it all day.

This sux.

If there are any breastfeeders who want to know what I find out at Stanford, let me know.

>:(

Title: Re: Any CH Breastfeeders?
Post by kristi on Jul 7^th, 2002, 9:11am

Tray-C,

Good luck finding something that will work! Hope you are pain free soon!

K

Title: Re: Any CH Breastfeeders?
Post by tommyD on Jul 7^th, 2002, 9:05pm

You should check with your doctor before trying anything, of course, but there are ways to cope without drugs.

Oxygen is a favorite way to stop an attack amoung the folks here. You will need high flows -- 7 to 12 liters a minute through a non-rebreather mask.

Click on the "water X 3" button to the left for a way to break a cycle by drinking lots of water. I have stopped attacks by drinking a quart of cold water quickly.

There are all sorts of tricks for coping: cold showers (hot showers for some), running around the block, ice packs, pressing your eye against air conditioning vents...

Look around the site, read the info, use the search button, then ask more questions. There are lots of experienced clusterheads here.

Title: Re: Any CH Breastfeeders?
Post by NotH20 on Jul 9^th, 2002, 1:11pm

Tray-C - from one mother to another - my heart goes out to you. I know how important breastfeeding is for both you and your baby. I'm sorry that I cannot offer you any words of wisdom - but we are all here for you. I would definitely ask for the O2 - I'm no doc, but I would think that it would be safer than anything else you're taking along with breastfeeding.

Keep up the hard work you are currently doing even though it's so very difficult. Just looking in those little eyes just makes ya melt!

NotH20

Title: Re: Any CH Breastfeeders?
Post by Jack on Jul 9^th, 2002, 2:54pm

I have had no problem breastfeeding.

I haven't had a cluster since I began nursing my son Flatulencia.

It is a rather sensual experience that I am enjoying.

Title: Re: Any CH Breastfeeders?
Post by jonny on Jul 9^th, 2002, 3:58pm

nurse me, Jack.

Im really into breast feeding when im doing the feeding.

..................jonny ;D

Title: Re: Any CH Breastfeeders?
Post by Tray-C on Jul 9^th, 2002, 5:16pm

Guys, please stop contributing sexual stuff. I'm in serious need of advice on this subject, and have been lucky enough to get some.

I'm practically in tears most of the time and in tears the rest of the time over this situation.

Not only am I dealing with being new to this syndrome, but I am having to throw all my pumped milk away and give my beautiful son crappy formula.

While your comments may be somewhat funny, they are not appreciated in this forum and are only making things worse.

Title: Re: Any CH Breastfeeders?
Post by 9erfan on Jul 15^th, 2002, 2:45pm

Stay away from the Stadol! It's my understanding that this is a narcotic that is extremely addictive! I use to work with someone who got hooked on it and basically couldn't function at work. I got a STadol injection at the ER one time and got SO sick I thought I was going to die!