verap, anxiety, antidepressants and other fun stuf

[Jilly from Philly]

2nd time posting here, but have already gotten a lot of help, encouragement and tons of info...an oasis in the desert. 

With special thanks to Hipshot & Dallas Denny, I am in the process of getting my hands on some 02, and then I start weaning off the verap.  In the meantime, went up from 240 mg to 360 a couple days ago (I know, pretty low dose) which nipped the slayers in the bud BUT woke up in the middle of the night feeling like my heart was pounding out of my chest and I wanted to crawl out of my skin...kind of like an anxiety attack but in the middle of the night? 

So I don't know if the CHs have started to fly me over the cuckoos nest, if its the verap (I had similar side effects when I started it the first time) or what but I do know it's really unpleasant...and I"m looking forward to getting off the stuff...though I'm bracing myself for these buggers to get really bad before I have the opportunity to bust. 

My anxiety is pretty bad in general right now and I'm feeling really blue about the headaches  :'( but Ii'm hesitant to go on psychiatric meds because don't they interfere with busting?  Considering the headaches are my biggest problem, treating them should take precedence over the mood issues...but I kind of feel like I'm losing it, missing a lot of work, feeling hopeless (which this website has helped me to combat).  My brain feels really scrambled, can't remember things, can't concentrate, etc. 

Any feedback on these topics or encouragement is welcome.  Thanks in advance. 

[CHfather]

Jilly, I believe the O2 is very likely to change things very substantially for you -- giving you relief and showing you that it can be done. Some "breathing room," so to speak.

I don't know all the technicalities of this, but it seems you will want a tank/regulator/mask for work in addition to whatever you're getting for home. Even if you have a typical nighttime pattern, you might find that shifting, and including some daytime incidents, as you bust or detox or whatever you decide to do. Others will please correct me if I'm wrong--I'm just speaking from my daughter's experience.

The other thing I will say about her experience is that after night after night of misery, she literally starting laughing like crazy the first time she used O2, because the effects were so amazing. (No, she wasn't taking shrooms at the same time--this was just laughter of relief and joy.)

It's all gonna get a lot better for you soon, I believe.

[FunGuy]

Jill:

here is a link to some of the side effects of verapamil:

http://www.drugs.com/sfx/verapamil-side-effects.html

I don't want to alarm you, but you should know this stuff.

Please consult your Doc if you have further reactions or symptoms.  OK?   :-)

In your first post you mentioned depression, now the blues and anxiety on top of that.

CH may be "your biggest problem" as you said, but depression may need to be treated also.  The oxygen will hopefully help you greatly and provide some relief if you do need to treat the depression.  Please do take care of the depression if you need to, do not ignore it.

Best wishes

FG

[Hipshot]

Like Dallas Denny told me when we first met: " if you are not sleep deprived and depressed, you don't have cluster headaches!"

You will find the opposite of depression when the mushrooms and oxygen take over. Exhilaration

I used to wake up in the middle of the night completely gasping for air. Terrifying! It was the verap/lithium combo. My neuro wanted me to have a sleep study. Once off the shit I had no more problems in that regard. I had to take miralax by the shovel full and still couldn't "go" . I was taking all kinds of stuff to fight the side effects. A very vicious cycle and bad on the body for shizzle. :-/

You are on the right track jilly, I'm not being silly.

Regards to all

Dan

[Jilly from Philly]

Please do take care of the depression if you need to, do not ignore it.

I am applying all the creative solutions I can to this problem: regular cardio, breathing techniques, yoga, and, most difficult of all, patience.  My experience with antidepressants has been nasty, and from what I've read here they interfere with busting.  I'm on 10 mg of Paxil, miniscule dose, but the last is the hardest to get off of.  When I get off the verap, just going to try busting while on the 10mg because I don't want to send myself into the deep end.  It's all I can do to stay sane on this dose, don't want to chance it.  Hopefully it won't interfere.  Feels like a catch-22, so that's my best solution. 

Seeing the doc on Thursday & pushing (harder) for a script; in the meantime, my dad (who's in medical supplies) got me a small tank, a little higher than 2 feet, and a regulator that goes up to 15 LPM...hopefully that is enough. 

Question: Do you wean off the verap (I'm on 360 mg daily) or go cold-turkey?  That thought sends shivers down my spine...Sounds more like Halloween than Christmas.

Dear Santa, I thought you were supposed to bring me PRESENTS in the middle of the night...

[Jilly from Philly]

The oxygen will hopefully help you greatly and provide some relief if you do need to treat the depression. 

Really?  Do you find that the oxygen helps alleviate depression?

It's all gonna get a lot better for you soon, I believe.

Thank you.  Your daughter is a lucky lady. 

[FunGuy]

Sorry Jill.

I meant the O2 will help with the CH while you are dealing with the depression.

FG

[Hipshot]

You want to wean off the verap. Drop dose by one pill per week. If you're taking 3pills per day...start taking 2 per day for a week and then one per day for the last week. I am not a doctor but that's what my neuro did when I got off the verap.

You will feel sooo much better when you get that poison out of your system and have a couple of doses of shrooms under your belt.

When you aren't scared and in agony daily and nightly the depression will take care of itself. IMHO

Dan

[CHfather]

Jilly wrote: >>Seeing the doc on Thursday & pushing (harder) for a script<<

Jilly, I wrote you a long message a while earlier, and then my ISP messed up and I lost it.  So I'll give you the shorter version here.  This is based on the arduous experience my daughter and I had trying to get a proper O2 setup. Just some things to consider.

1. Maybe have someone come with you to the doc?  We all have had those times when we really didn't get satisfactory service from a physician and later regretted it. Especially if you're already feeling crummy, someone with you as an advocate can help a lot. (My daughter was in the middle of a severe CH attack at the very time of her appointment, throwing up into the doc's wastebasket and crying from the pain. Doc still treated her like she had a hangnail and she (the doc) had more important patients to see.)

2. We found that handing my daughter's doc those articles about O2 that I linked to in your earlier thread seemed to make a difference. The doc became a little huffy when I pushed them at her, but I think it showed her that we were serious and knew what we were talking about, and she (the doc) wasn't going to get away with half-assing this.

3. It turned out that we basically ended up dictating the prescription to the doc.  So it's good if you know exactly what you want: several big tanks, maybe a smaller one or two for travel/office (as I mentioned in an earlier post); at least 15 lpm regulator, non-rebreather mask. OTHERS WITH MORE EXPERTISE, please help here with a full precise list of what Jilly should be demanding. I know many feel you should get longer tubing so you can pace if you want to and a "bubbler" (humidifier?) to make the O2 less harsh as you inhale it. My daughter doesn't have either of those things, so some are more optional than others.

4. For my daughter -- who as I mentioned, is about your age -- a "standard" non-rebreather mask was too big, leaving spaces where room air got in. Her face is fairly small. Honestly, I don't know whether masks come in different sizes, because a C'buster hero had given me a different kind of apparatus to try (more of a tube than a mask) and it turned out that worked great (and was preferable to the mask for my daughter because it's less confining).  But you should check on this with someone who knows, presumably at your O2 supplier (I think many have respiratory therapists on staff).

5. We asked my daughter's doc to please fax in the prescription right away. She said she would. She didn't. We had a hard copy of the prescription that enabled us to call the O2 supplier, read the items, and get the ball started anyway.  (Can you tell how very, very much I dislike my daughter's doctor? But (like you, I think) it was where she could get an appointment quickly.)

6. My daughter's O2 supplier, in a major metropolitan area, had practically none of the equipment my daughter needed. We had to push hard to get them to hunt it down and get it to her. I also faxed them the O2 articles, because they probably never had dealt with anyone with CH before, and we needed them to understand why this was urgent, and why she wasn't like their other patients, most of whom I imagine are folks with COPD.)

7. Don't assume that the regulator your father got you will fit on the tanks you get.  There are two kinds of regulators. Just saying, insist that your supplier provide a regulator -- don't assume you already have one.

All this sounds -- and seems -- ridiculous.  How can suppliers be so ill-prepared?  But ours was in every way, which leads me to

8. They guy who finally delivered my daughter's equipment brought the tanks into her apartment, handed me the regulator in a plastic bag, and, after telling me that all I needed to do was thread the regulator on, he left.  When I screwed the regulator on and tightened it by hand, air leaked out all over the place. When I called the supplier, I was told I needed a special wrench to fully tighten the regulator (just a big wrench, but one my daughter didn't have). The delivery guy was supposed to have given me one, but he hadn't.  That required a trip to a hardware store before the O2 was really set up.

So, when they deliver your tanks, insist that they set them up, make sure they work, show you everything about using them, and let you try it.  It's not complicated, but at least for me when I'm messing with equipment like that for the first time, I want to be sure I'm using it right. (And yet I still didn't insist that the delivery guy set it up and show me!)

I hope you don't mind all this, and I hope your experience is much smoother. (Thank goodness this is the "shorter" version, eh?)

Jerry

[TakinitEZ]

Jerry, Whatever supplier you used for O2 should be shot for not installing the regulator for you. That was seriously dangerous. Keep in mind that O2 saturates things around it and acts as an accelerant. Flame and O2 can be quite explosive.

My supplier couldn't be nicer or better (Miller Medical in Phila).

Jilly, All good advice above. I would recommend one large M or H tank to start, several smaller e tanks. At 15LPM you'll go through an e tank in about 3-4 episodes. You'll want one of these at work or in the car so you can get it fast when hit during the workday. The Nonrebreather mask they provide isn't bad, but for higher throughput and to eliminate seepage of external air, you'll want something like the Optimask (see link below). The regular one is fine.

http://www.lifegas.com/gas_devices_and_therapies/o2ptimask.asp

Keep in mind you can always ask for more once you're started with a company. For good reason, the quantity of O2 is not part of the script. They deliver based on your consumption.

Regarding the verap, I'm currently weaning off by my neuro's direction and dropping a pill every 3 days. I've been on for a lot longer than you, so assume that to be plenty safe. I've never had any of the anxiety symptoms you mention from Verapamil, although I guess it could be possible. I'd suggest though that the panic attacks and anxiety you are feeling are very real symptoms of an anxiety disorder associated with CH, which many have regardless of the therapy they are taking. Don't ignore it, it very well could be a chemical imbalance that could continue to affect your work.

Unfortunately what you are going through is pretty similar to what a lot here have been through. This thing can hammer your ability to work, so go as aggressively as you can to get in front of it. Sounds like you are.

-T

[Jilly from Philly]

Jerry, I'm getting redundant but thanks for all that information...and that was the shorter version?  I'm heading to the doc on Thursday, and I plan to go in armed to the teeth with information.  I am also (as you suggested) bringing some one with me, actually my ex-boyfriend who more than anyone knows the stark reality of suffering through this disease. 

Which brings me to an important point: the commitment you've demonstrated to your daughter is beyond heroic.  I have a stable loving and intact nuclear family, but they have been limited in their ability to offer me support (hence the slightly awkward but necessary invitation to the ex).  My family generally stays away from any and all topics involving these headaches and gets uncomfortable when I push the topic.  Sometimes I hear myself trying to get people to understand, and I just sound so whiny and overdramatic, like I'm seeking attention when all I want is support.  How frustrating when your immediate family and friends continue referring to your headaches as migraines despite the information you've printed up and provided them with....

So can I be your cluster headache adopted daugher?

    :-*

On a practical note, I take it insurance covers this O2 set up, includind delivery?  I'm a little concerned with the holidays coming up and a vacation planned that I won't get my set-up ready until Monday (my appointment is not until Thursday afternoon), but maybe these places will be open on Christmas Eve.  Keeping my fingers crossed.  Did it take a long time for your daughter's set up to get delivered?

Thanks again for all the helpful info.  I'm an English teacher, and you get an A+ for clarity and thoroughness.

[Jilly from Philly]

My supplier couldn't be nicer or better (Miller Medical in Phila).

I'm in the Philadelphia region; perhaps I should go with them...

Don't ignore it, it very well could be a chemical imbalance that could continue to affect your work.

Sound advice for sure, but here is what I see as a serious conundrum: psychiatric meds can decrease your chances of a successful bust, right?  So I feel like I'm in Sophie's Choice.  I could definitely benefit from a handful of SSRIs right now (in the short term) but because of my past experience with them and difficulty getting off, I am VERY wary of going back up (am on 10mg of Paxil now).  So I push push push through, but over the past couple weeks I've been very close to starting again, just so I can continue to function and work....

And we're back to the chicken and the egg.  Treat the clusterheadaches and hope the depression alleviates, or vice versa?  My instinct tells me the former, but conventional medical wisdom tells me otherwise... 

"When the bird and the book disagree, always believe the bird." -James Audubon

[TakinitEZ]

My simplistic recommendation is to take the meds you need to be effective, then plan your bust. It'll take at least a couple weeks - the first to wash out prescription meds (a tough time) and then a bust and a week or so to see if it's working. If you can afford to do it, plan a 3 or 4 week busting period. Hopefully, if all goes well you'll never need to return to the meds.

The holiday breaks seems like a good busting window if you can get through dealing with the relatives.  -T

[CHfather]

Jilly, all I can say about the family thing is that the instinct to find excuses not to have to be present, to be in denial about how hard the kid's life is, is very strong. (Lost my A+ there, for awk structure, but it had to go some time.)  My daughter would always tell me. "It's not so bad, dad. Don't worry."  But this time I was there during her attacks, and a lot of that time -- before O2 and busting -- I just wanted to run away. I'm not patting myself on the back; just saying I can understand how much easier it is to be in denial.  Now that I'm back home and not with my daughter, I still dread picking up the phone to call and find out how she's doing. So far, reports are good, but I always wonder/fear what it will be like if they aren't.

I feel like everybody here is family, which makes you my adopted daughter whether I want you to be or not!

It took a while to get the O2 for my (other) daughter (the one that's not you) -- a couple of days.  Yes, I think insurance will cover the whole deal. I think if I was (or were) you, maybe I'd contact suppliers now, starting with Miller Med, and just ask what it would take, if you got a prescription on Thursday afternoon for a large tank, a regulator of at least 15 LPM, and a non-rebreather mask, to get that prescription filled on Thursday late or on Friday. (More awk)  As I mentioned, my daughter's supplier had never even heard of CH, but you might try telling them (or having the ex tell them) why this is so urgent for you.  If they know CH, I imagine they'll understand. 

When my daughter was scheduled to come to Chicago last week on business, I contacted a local buster who let me borrow one of his tanks (I had a mask and a regulator, but he would have loaned those to me, too).  Maybe you might post a message at this board asking whether anyone would be able to do the same for you.

And, for the tank, there's always the welding-supply method, no prescription needed, that's often mentioned here and that I believe has been suggested to you.  I failed utterly when I tried that, but I think it was because I was so transparently not a welder, and I asked so stupidly.  Apparently it's not hard to get a tank.  Others can advise you better than I can about this.

Wish I knew more.

Pops

[Jilly from Philly]

Pops,

"Wish I knew more." Sounds like you know a lot.  Great idea on calling Miller Med ahead of time, will do that tomorrow, appointment's on Thursday. 

Tired and hoping to get some sleep tonight.  Fingers crossed.  Made it to work today and found the kids to be surprisingly energizing.  Maybe that's because I've given myself a free week before the break and we're just watching Nightmare Before Christmas.  (I know, I know, bell-to-bell instruction, but I'm trying to cut myself a break).  Great movie. 

Understanding is understanding, blood relative or not.  In the spirit of the season, I'm counting my blessings and giving thanks.  So grateful this site exists, buster or not. 

Buster...funny word...I imagine the Ghostbusters theme song playing when I come on here. 

[Hipshot]

I can't imagine being a school teacher and having clusters.

You are probably a pretty good actress too.

Hang in there.

Dan

[Jsmacks]

I can't imagine being a school teacher and having clusters.

CH and that profession is very very impressive! Takes a strong person to handle CH with KIDS EVERYWHERE!

[Bonkers]

Hi Jilly,

My son has been able to successfully bust while still taking Methadone. If access to busting supplies isn't a problem, you might try it before you've totally weaned yourself from the Paxil. Go as low as you comfortably can of course but don't get to the point where you're losing your grip to better insure a successful bust. My son needs to take more shrooms than most and that might be the case for you too but you don't want to take more of them than you're comfortable with either. Good luck.

Ron

[Jilly from Philly]

Thanks, Ron!