It has hit me; I'm gonna be so screwed; small pity party for me.

[PetraPooh]

I am 47, I've had cluster headaches since I was 9. At age 28 when my ex-hubby traveled every week and the doctors had me on a combination (yes, a prescribed combination) of vicodin and darvocet to be taken upon the first hint of a headache and continue taking for at least 3 days; anyway, my housekeeper was there one day when a headache hit full blast, I should've taken the meds a couple of days before but I had an infant and a 4 yo and husband was going to be gone for at least two weeks. So there I was bawling my eyes out, head between my knees refusing to take any meds because I knew I would be too woozy and high from the meds to care for the kids. Usually I had the option of having a neighbor tend the kids for a couple of days but it was spring break and everyone was on vacation and gone.

So the housekeeper asks me whats wrong when she gets there, I tell her. By lunch time I was starting to get hysterical, so she asked, "Have you ever smoked pot for those?" "NO, I don't get stoned,"I responded (my brother is a junkie and he started with pot, so I was very anti-drugs). She says, "I didn't say get stoned, I said smoke some pot." So I tried a bit, three puffs was all, but it was magic, headache gone, in complete control of myself, willing and able to tend my children. It was a miracle.

Since then I have done three things, one I have stayed out of the employee work force to avoid anything like a UA, started quietly growing my own pot every summer outdoors in the garden so as to stay out of the drug dealers lair, and I've smoked 6-12 puffs of pot every day . . . well until my business went down (real estate related photography) in December 06. I had enough money to not panic and I had some pot stored. But it became obvious that many businesses are now requiring a UA, and I need a job, I don't have enough $$ to invest in another business for myself. So last summer I didn't grow figuring I would need to be able to pass the UA's pretty soon.

So far every UA I've taken has been "dirty," mainly because I've still been smoking just a touch when the headaches are the worse, and being so saturated to start with probably didn't help. So I've been unemployed now for quite a while, about a year and a half, living off an equity line of credit. Anyway I ran completely out pot about three months ago, had no discernible withdrawal symptoms except weight loss (more on that in a sec) and some insomnia, both of which I also had before smoking pot but I hadn't connected my healthier weight and better sleeping with pot until I quit. Good news, I'm pretty sure I can now pass a UA. Bad news...I am in so much pain I can barely breathe. It started a couple of weeks ago, but it was just little afternoon headaches, not too bad. Then I started getting insomnia, and I've lost about 20 pounds (I have a very high metabolism and without the munchies I've dropped from a healthy 5'5" and 110# down to about 90#). But yesterday and today have proven that my hope hasn't come to fruition; I was so hoping that when the pot wore off completely I would find that my life long headaches were no longer.

I live alone, I have no one to feel sorry for me except me; I am so sad, so angry, and so despondent I just want to die right now. It isn't fair, the best thing for me, the safest solution to my problems, and I can't have any and have a job. I can have no relief unless I want to socialize with drug dealers and even if I was willing, I have no money left for such expensive illegal product, and I don't even know any drug dealers.

I'm sorry, I'm usually a very strong self sufficient hearty woman, I haven't seen doctors for anything since 1991; that's how healthy I've been since I started toking in 1988. Does anyone have a couple of hugs they could send my way? I'm sorry, a hate pity parties, but I'm sure having one, huh?

[Hawkeye-X]

1. Ex pot-smoker here.

I sympatheize with you. You need to see a therapist - even a drug counselor will help you even if you have dirty UA - I see him on a regular basis, and has helped me out of a lot of jams.

There's always Marijuana Anonymous (www.ma-online.org) if you need a support group.

:hi: :hug: :grouphug:

[PetraPooh]

3. No ouu don't understand, I'm not feeling sorry because of withdrawal,

I'm feeling sorry because I cannot legally or comfortably get what I need to survive these cluster headaches without huge doctor costs (which I can't afford much less a therapist) and employment stigma. I don't need marijuana anonymous, I withdrew without any withdrawal symptoms to speak of. But the reason I started smoking has come back with avengence.

Thanks for the hugs!

[Midlodemocrat]

5. What huge doctor costs?

The drugs you state you were on are available for $4 at Walmart because they are available as generics. Find a compassionate doctor and he/she will allow you to make payments.

Taking prescribed drugs will not disqualify you when you take a UA. Believe me.

Good luck. :hug:

[PetraPooh]

8. Oh, I doubt any doctor is going to prescribe anything for me till

they run dozens of tests to prove what I already know. That would cost thousands of $s. If I attempt to "push" just getting relief, he/she will think I'm just a narcotic wanter/abuser. And lastly, I've never set foot in a Walmart, and I never will.

[Midlodemocrat]

14. Sorry. As a health care practitioner, I'm not buying this.

And your holier than thou 'I won't set foot in a Walmart' really, really stinks. People do what they have to do. If you need to get cheap drugs at Walmart, no one will care. Except apparently you.

Good luck. I'm done with this.

[LeftyFingerPop]

15. What is the problem with erroring on the side of...

believing the OP?

So if you are wrong, so what. It's the internet after all.

Quite a mean spirited post for a health care practitioner.

Quite a mean spirited post period.

[PetraPooh]

18. Well, now you see why I'm not in a hurry to see anyone in the health care field.

They all seem to have "bullshit on you" syndrome. And why should I support Walmart ever. That line is drawn for a reason, I'm sorry you can't see what it is. I'd rather have to deal with the pain and a pity party from time to time, than a guilty conscience for supporting an evil mart.

[mopinko]

27. walmart- costco has most of those $4 drugs

pretty cheap at their online pharmacy.

as far as the rest, i hear ya. i have pain problems, and doc have a very jaundiced eye in these cases.

[JoDog]

35. Some other retailers

now have $4 generics in order to compete with Wal Mart. The one that comes to mind is Target. Check around and see if you can find an alternative that will get you the meds you need at a price you can afford without sacrificing your principles. Although I'll tell you something someone once told me, "Principles are something only the rich can afford to have."

As for going to the doctor only to have them run expensive tests to confirm what you already know...you should check out to see if the doctor you visited in the 1980s is still in business and has your files. Even if they have closed doors, they may have transferred all the old files to another doctor's office. The old files with your diagnosis on them may still exsist out there. If you can present a new doc with that information, it may cut down on the number of tests they need to run.

I have a friend in chronic pain due to a variety of conditions, and I understand where you are coming from. He would use pot if it was legal to do so.

[Fovea]

13. I completely understand

One third of my body is in constant pain from a bit of dead brain, so I take gabapentin and vicodin.

Both of them together get me to the point where I don't just sit and weep.
Then there is marijuana, which not only does a much better job with the pain, but doesn't turn me into a zombie to take care of half the pain. Together with the gabapentin, it gives me something like quality of life.

When the gabapentin makes me feel too much like I am watching myself from 20 feet away, I can cut down a bit and come back to my senses, if I have a little pot.

It also makes the weird sensations from the stroke more livable.

But I live in Kansas.

And Kansas does not care about my pain, only about whether 16 year old girls are on birth control.

We really need someone humane in the White House, and a lot more real Democrats in Congress.

[PetraPooh]

17. Exactly! You get my point. Thank you.

[Tuesday Afternoon]

2. ~

:hug:

[LeftyFingerPop]

4. I'm sorry to hear this....

and I understand your frustration.

Stories like yours make a strong case for medicinal marijuana.

Try not to panic...as you said, the good news is that you can now pass a UA.

Please see a good doctor, and tell him your story. Since it has been so long since you have seen a doctor, my guess is that they have developed much better pain management options.

Best of luck to you. :hug:

DON'T GIVE UP...YOU WILL BE ALRIGHT.

[PetraPooh]

7. Thank you, I wish people would realize the value of Med Marijuana, I shouldn't

have to be going through this. I should be able to have the best thing available for my problems, the one that has the least amount of side effects. The one that allowed me to be a great mom for 20 years without the extensive side effects of pharmaceuticals. If I hadn't tried pot way back when, I had already been told the next step for medication for me was Oxycontin. I was so glad when the pot meant that not only did I no longer have to mix two narcotics for relief, but also I wasn't going to have to escalate to something as addictive and dangerous as Oxycontin.

I have no $$ right now to see a doctor, particularly when after so many years, I'm going to have to have thousands of $'s of tests before anyone believes that it is the same cluster headaches I had been suffering for years.

[LeftyFingerPop]

9. I understand the boat you are in.

even if you can't afford it....just go.

You have to get some relief.

Perhaps you will need the tests, perhaps you will not.

Just get to the doctor. Very few will turn you away where I am from.

[PetraPooh]

11. I'm just curious, when you get the papers you have to fill out when you

arrive and they include medical insurance or payment type, what am I to say? Oh, I was hoping for free services? They will just apologize and send me home. I suppose I could go to the emergency room where they have to see me, but then it really looks like I'm trying to just get some narcotics. Wouldn't it?

[LeftyFingerPop]

12. Try a walk in clinic....

Tell them you are self pay and to bill you.

If they turn you down, go to the ER.

If they have a Sisters of Charity hospital in your area, go to that ER.

[Coyote_Bandit]

16. Are there still medical clinics

where they will bill a self pay patient? Not in my part of the world. Even if you have health insurance here they call to see if you've met your deductible. If not they expect payment when services are rendered.

[PetraPooh]

20. Yep, that's what's here too.

[PetraPooh]

19. No everything around here is a St. Something and they expect payment upon completion.

Amazing to me that the catholic hospitals and small clinics are so greedy.

[zingaro]

21. I'm not sure I totally agree that

thousands of dollars in testing is necessary. I imagine that you were frustrated by the poster who immediately shrugged you off; I would urge you to put out the office visit money for one or two physicians before you determine that any doctor is going to require tons of testing for cluster headaches. If you spell out your history for your doctor and explain your reasoning in addition to discussing financial concerns, I don't think you're going to run into the stonewall you think you will run into.

It can't hurt to try. And in those years, many improvements have been made in migraine and cluster headache pain management.

I am so sorry for your troubles, but I strongly urge you to give it a chance before discounting every doctor out there. Best of luck to you - I hope you find relief. :hug:

[PetraPooh]

30. Will do. It has just been so nice not having to be on that merry-go-round;

but I guess I really don't have a choice except perhaps to move to CA. Been pondering that quite seriously. I've also been really scouring the net for "therapies," "trigger control," and things like this to see if I'm missing something. And we (my daughter came by last eve to cook me some dinner) found that by chance, I actually happen to lean in directions that avoid triggers and bad intakes, and lean toward the things that tend to be relieving factors like long walks at a quick pace, stretching (not yoga for me, I prefer the NYC Ballet workout, though about 7 lessons a day is plenty, I've never tried to do the whole 15 lessons) Also i was reminded that one of the plants I have growing round the yard as ground cover, it actually categorized as a mild narcotic (perfectly legal to grow), so I'm drying some of that and we will see if that might relieve that pain as well as pot. It is just getting warm enough here that these plants are putting out new shoots, so there isn't much, but enough to try anyway.

Thanks for the hugs. This morning it is down to a dull roar, but that is typical, we'll see how this evening goes. Fingers crossed.

[zingaro]

40. So now

I'm wondering how your evening went. Well, I hope?

I have two sisters who suffer debilitating migraines (the FMLA paperwork kind) and they both onset around menopause. Being very close myself, and noticing that my own headaches seem to pop up around the start of my period, I'm paying close attention to triggers too...

:hug: I have plenty of those hugs. Any time you need one, K?

[PetraPooh]

46. Well, the evening was not as bad as the one before, but the headache was there.

And its already starting for this evening, my right eye feels like they are being pushed out of my head. So I'm guessing tonight will be a duzy. Fingers crossed that I'm wrong.

[ikojo]

48. I get those kinds of migraines

[vlas]

6. I'm Sorry!

I had cluster headaches for a few months once and I hope they never come back. This is not medical advice, just my experience - for me cold compress to the back of my neck - particularly at night - sometimes helped as did a shower. I'd read that oxygen helps - so did push ups or swam or walked as soon as I felt one coming on. All the best to you. They are terrible. I can't imagine a lifetime of them and I'm sorry that what worked for you is out of reach now. I would have done just about anything to make them stop. I'm very sorry.

[PetraPooh]

10. I'm so glad yours were only a few months. I have so enjoyed my years off, so to speak,

and tonight I am just so po'd to have to be in this position because of the "war of drugs" bullsith.

Thanks for the care and sympathy.

[StrongBad]

22. Is moving to California an option?

You'd be able to get a medical marijuana license with no problem whatsoever. I know that's kind of a drastic step but something to at least consider...

[PetraPooh]

31. Definitely considering it. I'm in Idaho, so its not so far to move, just a culture shock.

Perhaps even the culture shock would be a good thing. Idaho is a bit "restrictive" in many areas, to say the least.

[Akoto]

23. The only semi-worthwhile advice I can offer is ...

It happens that I suffered from migraines when I was younger. Some were so bad that they made me vomit. These have become less common as I've aged.

Try not to think catastrophically. It's really hard, I know. I have a condition called Chronic Pelvic Pain Syndrome, which is poorly understood and devoid of reliable treatment. Opiates are simultaneously the best and worst methods of pain management for it, as they will mask the pain, but also lower your pain threshold and stop the healing process.

In other words, I'm pretty much "screwed" and have to deal with the pain for the rest of my life. I am only 23 years old, so that could potentially be a very long time. Still, I try to take it day by day. Thinking about what will happen four or five steps into the future does nothing but further tense my body and stress me out, both of which increase my pain. If the things I fear happen, they do, but it has been of no use to me to contemplate suicide and other "solutions," nor to weave stories in my head about how bad the future will be.

You are somewhat more fortunate in that headaches take place in a "non-scandalous" area, unlike my condition. Great strides have been made in the treatment of migraines and related conditions. If you feel the need, then call around to investigate where you can be seen for the least amount of money, or even if someone will bill you/take payments. I have no insurance, and have found many places willing to provide a large discount for people in my condition - so long as we'll pay the discounted fee right then.

Recovery is ultimately prevented by your pain. Before you'll get anywhere, you have to find a way of overcoming it.

[Fovea]

24. Can you cite me studies about pain meds and healing rate

This is either new science or old opinion, IMO.

I say that because the trauma patients I worked with in Orthopedics would never have rcovered at all, considering the amount of opiates they got. Some of the worst ones were on morphine for months. They generally healed fine once out of the critical period.

Anecdotally, I am on enough painmeds that my pharmacy freaks out about everything else, even insulin. And I have had a few bad falls since the stroke, both on foot, and off my bike.

[Akoto]

25. Sorry, I can't.

I don't know where to look for them. :)

This may be particular to my condition, of course. CPPS is relatively new in its current understanding. It used to be called Chronic Nonbacterial Prostatitis in men, until the urologic field began to realize that the prostate was merely a symptom and not the cause. The new name also came about as a result of the fact that, in women, there is a very similar condition called Interstitial Cystitis. Women were having the same problems as these men, but they obviously lack prostates.

Unfortunately, the above revelations still leave us with little to no knowledge about causes or treatments. This is a condition which millions of men and women suffer from (some 50% of men are diagnosed with prostatitis at some point, with the vast majority of cases being nonbacterial), but the private nature of pain involving the genitalia hasn't helped with research pursuit. What's more, it appears that the problem is not anatomical in any way understood by medical science. Urology is a field in which most profits are earned by surgery, and it's simply not profitable or time-worthy to treat CPPS sufferers. I have read it described as a "wastebasket" diagnosis for when all else has been ruled out.

Regarding pain medications specifically, I can only relate what I've read and been told. In the midst of one of my most agonizing flareups, I asked my urologist for something to take the edge off. He told me that, counter-intuitive as it may sound, pain medication appears to stop the healing process within the sensitized nerves. Something to do with Central Sensitization, which is a neurological issue I don't understand well enough to adequately explain. Very basically, the idea is that the nervous system 'remembers' long-term and/or traumatic pains, and then issues false signals perpetuating that pain. This is why folks have chronic issues even after healing of the cause, and why amputees feel pain in limbs they no longer have.

There is also a book (the only one on this subject, to my knowledge) called Headache in the Pelvis, which is written by individuals running a CPPS therapy clinic at Stanford University's department of urology. They have found that opiates tend to reduce the pain threshold and receptiveness to other treatments in their patients. The only pain drug they show any real support for is Valium, which they feel can be useful in giving oneself a 'break' on a very occasional basis. It has sometimes been useful in aborting flareups, which are periods when our symptoms are at their worst, but the risk of addiction is unfortunately quite high.

Still, I am keeping pain management in the back of my head. I know that I'll have to be on it for the rest of my life if I go that route, as this condition doesn't really go away. It merely cycles from periods of intense pain/irritation to periods of few symptoms.

I do have some hope for Stanford's method of treatment, which has helped many men. They believe the issue often stems from chronic muscular tension in the pelvic floor, which refers to other areas like the genitals. They use a combination of external/internal physical therapy and psychotherapy at Stanford (many CPPS sufferers, myself included, are exceptionally prone to anxiety/depression/catastrophic thinking, all of which can intensify tension and pain).

[Fovea]

38. The orthopedic pain management model

Involves allowing the patient to titrate their pain meds within limits.
In the initial post traumatic phase, shock prevention and reduction of pain/spasm feedback are achieved with IV narcotics and hypnotics. After that, meds are backed off, reserved for post PT management.

I wonder if TENS (trans cutaneous electronic neuro stimulation) might be effective? If there is a referred pain component, then TENS might be very effective.

It also might work as a bridge pain reliever, though chronic use is not sensitizing to my knowledge. But valium makes sense. Any of the 'pams' make sense. To my thinking, so would robaxin.

Though of course, I am not a doctor.

[Akoto]

41. Actually, you're not far off.

TENS has proven quite helpful to some people, so much so that there's even a rectal version suited for direct use on the pelvic floor!

One of the most frustrating aspects of this condition is the difference between sufferers. One thing that works for Joe, like TENS, may offer absolutely no benefit to Bob. It's a constant exploration to find out how you can best handle your symptoms.

In my case, I like to think that pain management is a last resort, but is always there if I ultimately need it. It's reassuring to know that. There's no shame in responsibly taking pain medication if it improves your quality of life, after all.

Anyhow, I feel as though I've hijacked this thread, for which I apologize! :)

[LanternWaste]

26. I cursed God last night at 9:45.

I get cluster headaches too. As a matter of fact, my newest cycle only began last week.

To be honest, for me pot is a pretty heavy-duty trigger for me during my cycles. Along with smokes and alcohol-- I'm a wet blanket full of no fun during a cycle...

Anyways-- here's a few tips that I use (they don't lessen the pain to any degree, but they do make it more tolerable...)

Air Conditioner Therapy-- if I can get my face directly in front of and about six inches away from an air conditioner about five minutes prior to the onset, I can be pretty confident that it won't be a real Monster-- merely a baby Monster

Tylenol PM Therapy Once I'm in the Cycle itself and know when they're going to hit (I'm lucky-- this time around, they're coming at 8:30pm and usually end by midnight-- so I'm not missing too much sleep and they don't hit me at work), I pop four Tylenol PM. It doesn't really lessen the pain, but it tends to make me groggy, and muddle and dope up my brain so that it seems I'm not as aware of the pain as I might be.

And here's a real home remedy (more a comfort and less a remedy)-- Find a non-porous sleep mask (plastic or some such) and lightly coat the inside with Vick's Vapor Rub before putting it on. I know-- sounds crazy, right? Well, it certainly keeps the nose from clogging and brings a sense of relief when the eye begins popping out.

I'm so sorry, Pooh. During the worst of a cluster, sometimes I really think I'd kill myself if only I could manage to stand up and find the strength/concentration to do that. But we know that once The Monster hits, we're slaves. Martyr's to the cause of feeling fine.

I cursed God last night at 9:45. I'll probably be doing the same thing tonight. And every night for the next four to six weeks. My only consolation is that it's not chronic in my case-- I've read of sufferers who get two clusters a day every frikkin' day! I wouldn't be alive anymore if I had it that bad.

All my best thoughts, wishes and prayers coming out to you!

[PetraPooh]

32. Oh my, yes you know what I'm talking 'bout. Mine tend to ease in about

2pm - 3pm pretty much daily, then escalate till round 2am and I can manage to drift off at night. Then out of nowhere, with no discernible causation, they will stop for one to three weeks, then back with a vengeance for months.

I am actually quite a fan of VapoRub, so it doesn't sound crazy to me, though I haven't tried a mask quite like that. I'll give it a bash.

[orangerevolution]

28. Does it Impair your judgment?

What if there is an emergency that requires you to operate large machinery, a car. If you are high on your pain medication, does it concern you that you may have impaired your judgment making ability?

To say you refrain from driving during this period is short-sighted.

Not having your problem, I can only imagine.

[PetraPooh]

33. Exactly the pain meds made me worry just even for tending my kids

with proper attention and judgment. Unfortunately there were many times I HAD to tend the kids in this condition as well as pretty much having to drive and do whatever else needed to be done. Done poorly I grant you. That was one reason I was so glad that pot worked so quickly, so well, and three puffs does NOT make a person high in any sense. Some of my clients were police officers and I was pretty much honest with each of them after a few visits; they commented often that they could not for the life of them have known I had smoked just before they arrived, if I hadn't told them that I had. And since I am a control freak, I have never had the desire to get "stoned" like I've seen kids, and my peers back in the 70's do. Just a couple of puffs, lunch, dinner, and bedtime.

[bertha katzenengel]

29. Go ahead and wallow for a while. You deserve it.

:hug:

[PetraPooh]

34. Thank you, this morning is better. Fingers crossed for this afternoon.

[backscatter712]

36. This is why cannibis needs to be legalized.

It has real, powerful medical benefits, as you've seen for yourself.

But nooooooooooo, the drug warriors won't even allow it under a prescription...

[PetraPooh]

37. So true.

[Connonym]

39. I'm sorry that you're struggling

I was just reading something the other day about marijuana being found to be very effective in fibromyalgia pain. Unfortunately,there are still plenty of people who think fibro is all in the head and they're probably the same people who freak out so much about the medical use of marijuana. When you consider that morphine is legal for medical purposes and cocaine is legal for medical purposes you have to wonder why the hell is marijuana so demonized?

Chronic pain is a very real and debilitating thing and there are so many people out there who want to judge you as a hypochondriac or a drug seeker or whatever other nasty label they want to stick on you. It's truly awful that there are treatments that can substantially improve the quality of life for millions of people who suffer with chronic pain and yet the medical community (and government) are so opposed to prescribing them. I wish I had some suggestions to offer. :hug:

[PetraPooh]

45. Yes, I've heard that Imitrex is very expensive. It didn't work for the only

other person I know who tried it. I'm so glad it works for you. I have heard that marijuana works for fibro, but I have no personal knowledge that it does, nor do I know anyone with fibro. I hear is it quite debilitating. My sympathies to you.

[libodem]

42. headaches are the worst

and I should know. I have a chronic pain syndrome from a squished disc at L5-S1. I had it fused last summer but I've been left with unending neuropathy in both legs. I take Lyrica and Norco daily. I don't know if pot would do it for me? I've had migraines all my adult life. Imetrix will prevent it from even happening if I take it at the first sign. I have heard that Imitrix may work on other types of headaches. It's expensive though. I think that pot outta be decriminalized. I wonder how that would work with pre-employment drug testing? If a certain amount of nanometers per deciliter would be acceptable? If a person isn't high at work why should any one care. What about certain professions like your brain surgeon or electrician? Creates a lot of questions.

[conscious evolution]

43. As an electrician

I can say that pots side effect paranoia makes me much more careful when I do my job.And not because I may have to take a test if I get hurt.When one is working with something that can kill you you want to be as paranoid as you possible can be.

[PetraPooh]

44. I had never thought about it that way; but you have a point.

I personally have never gotten high enough to feel paranoid about anything; however I do notice that I tend to have many "breakthroughs" very shortly after I had my evening few puffs. Problems that seemed insurmountable or just plain stuck suddenly I would think of an answer or a solution to the issue.

I do choose not to drive though immediately after smoking because I notice I tend to be a little too much on autopilot, I'm guessing because I become cerebral as mentioned above.

[Mezzo]

47. Have you ever thought of going into business for yourself? nt