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Title: To Med or Not to Med--That is the Question Post by georgej on Jul 13th, 2006, 2:34am Hi all, I elected many years ago not to use medication. This decision came about back in the days when the stuff they gave us amounted to Sansert, Caffergot, and a smorgasbord of pain medications--I was prescribed Darvon, Darvocet, Dilaudid, Tylenol 3 (with codeine), and so forth. I was even given a morphine drip on one or two visits to the emergency room. Frankly, none of it did a damn thing, except make me loopy and dysfunctional. The side effects sucked so hard they could have sucked a golf ball through a hose. I'd have had better luck visiting a witch doctor. The experience I had was exactly as effective as someone shaking bones and rattles over my prostrate self, and whacking me with inflated pig bladders. I've since had a couple of life-altering experiences with persons I loved being killed with well-intended prescription medications. It seemed to me that, in many cases, the existing pharmacopia amounted to a suite of blunt instruments that were wielded with much enthusiasm and less skill. Since CH is not fatal, I was reluctant to ingest things that may do more harm than good. I'm also aware that things have changed a lot since the bad old days, but it seems to me--after reviewing the medication survey--that a lot of people have made the same kind of decision that I made. Not to med. I realize that the decision to use medications or not is a deeply personal one. I'm episodic. If I were chronic, my decision might very well be different. As time goes on, my cycles seem to be winding down like a pendulum slowing to a stop. At this point, I'm afraid to mess around with this apparent natural process. So I will likely continue dancing with the beast on his own terms. My question is--how and why did you make your decision to use medications or not? And how do you feel about that decision? Best regards and PF wishes, George |
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Title: Re: To Med or Not to Med--That is the Question Post by chopmyheadoff on Jul 13th, 2006, 3:23am I suffered for 7 years undiagnosed. I was diagnosed about 3 weeks ago when i went to a+e screaming with a kip 10. They gave me a shot of imigran and the ch dissolved before the doc had counted to 10. I was so happy i cried all the way home. I finally have a weapon against this brutal dissease and DAM RIGHT IM GONNA USE IT much respect for your own beliefs - but after 7 years suffering med free - now, i personally would do anything to stop the pain. (im chronic btw and things may be different if i wasnt) |
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Title: Re: To Med or Not to Med--That is the Question Post by georgej on Jul 13th, 2006, 3:40am on 07/13/06 at 03:23:41, chopmyheadoff wrote:
I certainly respect that. I have the greatest respect and admiration for the tenacity and strength of the chronics among us--how do you survive? If I were chronic, I most likely would have made the same decision. I'm glad you've finally found something that works for you. Best wishes and many PF days ahead, George |
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Title: Re: To Med or Not to Med--That is the Question Post by sandie99 on Jul 13th, 2006, 3:42am Good Q George. I've danced with the devil since 2001 and I have tried both ways, meds and something else. In the beginning I relied on my then neuro and meds, but now I rely on myself. These days my treatment is a can of red bull/other energy drink when I get hit. I kill shadows with two to four Vicks Red Energy throat tablets (which also have caffeine, guarana and taurine). And this treatment works for me. Actually RB kills hits quicker than any other "meds" I've tried in the past. Plus they're cheaper than other meds! ;) I also use affirmations, healthy diet and visualisations to help me out. The meds I took gave me lots of side effects: other headaches, chest pain, my BP went down & I fainted several times, only to mention few. My body reacts to meds strongly, so I kicked meds asap and decided not to contact neuro at all the last time cycle started. I have met 6 neuros during my ch time in two coutries. I liked 3 of them, trusted 2 of them. Only 2 of them actually took time to listen what I had to say about treatments and my reactions to them. 2 of them clearly didn't know enough about ch to be able to treat me correctly. When one of them said that I know about ch more than most of his colleagues, I decided that it's time to take my treatment into my own hands. It's true that it was meds which finally stopped my chronic cycle, but after 11 months of PF time ch returned. So I thought, if the beast visits me anyway, I might as well get rid of it the way I like the best. And I'm doing it now. My advice to everyone: read lots, educate yourself, update your information. I welcome all sorts of treatments, because what works for one doesn't work for another. Things change and so does the beast. But never start to treat yourself without knowing what you're doing. Best wishes & PFdays to all! Sanna |
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Title: Re: To Med or Not to Med--That is the Question Post by E-Double on Jul 13th, 2006, 7:33am I was un or mis diagnosed for 10 years and episodic. In 2004 my here we go again" began but went heywire, I used to be 2x a yr with only night attacks. This time throughout day and night. I was finally diagnosed and started meds......... Med after med and still heywire. Finally was seen by one of the world's best and got things under control, however after 2yrs and many side effects I decided that I had enough. I had lost my wits and became depressed on Topomax. I developed lithium toxicity. I was just tired and figured that despite now having a 2yr cycle (chronic) that if I am still having attacks with meds I wanted to try again with out. I was going to "ClusterBust" but found that I was dealing well and just never did.....I will do that if it ever comes back to the point where I consider meds again There is a school of thought and some research that suggests that medication can turn one chronic; that some despite decreasing frequency will increase duration. Some meds such as imitrex are reported to increase frequency of attacks. Well I tapered off all meds and only use Oxygen to abort. My cycle has not broken though it is much eaier to deal with. I have high and low cycle within this chronic state as many do. It seems 2 weeks on 2 weeks off. This means, 2 weeks of higher frequency then a 2 week period of lower. I also rarely have "higher"shadows anymore. I will get some discomfort but it no longer lingers. I have my wit back. I feel healthier overall I can not say that I will never go back on meds but I can say that I prefer being med free for now. Personal choice of course |
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Title: Re: To Med or Not to Med--That is the Question Post by Thomas_Martin on Jul 13th, 2006, 8:24am During my first visit of the beast, for which I was quickly diagnosed (Thank you god!), I was medicated. It lasted about 20 weeks and passed. A couple of years later it came back, I medicated and 20 weeks passed. The beast decided to fade, but not totally go away. Since then I've been what you call mildly chronic, I have my good days which are either painfree or only havoked by mild shadows, and then there are the bad days which means means plenty of wakeup calls and screams of distress. I've decided some time ago to forgo meds and see if I can find links in my daily patterns that trigger these attacks. While I have discovered some triggers that I can avoid, I also found some that I cannot. If I hadn't quit the meds, I think that those triggers could have missed or at least, not found as "easily" as without the meds. Again as the other posters said, with or without meds, episodic or chronic, this is a terrible curse to bear. We each carry it and each have a way of dealing with it. regards and respect to all my fellow cursebearers Thomas M. |
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Title: Re: To Med or Not to Med--That is the Question Post by pattik on Jul 13th, 2006, 9:00am Hi George, I have been episodic for over 27 years, but only diagnosed correctly for the last 12 years or so. I was raised to have a deep respect for the power (and potential danger) of prescription meds. I am not reluctant to use them, but I go into it armed with as much info on each drug as possible. My attempts with Lithium and beta blockers were largely unsuccessful. Imitrex is a miracle drug for me, but the cost is pretty prohibitive. Since it is clear that drugs that work for us may stop working or vice versa, I never say never about trying new things or retrying drugs which previously didn't work. But I will always opt to try the gentler approaches first. I agree that if I were chronic, I would probably have a different outlook. Pat |
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Title: Re: To Med or Not to Med--That is the Question Post by seasonalboomer on Jul 13th, 2006, 9:16am George, Great post by the way, and wonderful answers so far on both sides of the question. I went 10+ years of a no-med strategy, after having watched my father struggle with the meds that you mention in your post. He had a severe CH problem that at the time they were trying everything in the cabinet on. With hindsight I was probably a bit closed-minded and stubborn. And this site helped me learn more about each of the medications and treatments and formulate a strategy that was better than gutting out each cycle as though it were my cross to bear. I had my first success with Kudzu, which quickly altered my view with regard to "doing something about my cluster headaches". I realized that I needn't sit by passively and just let it all happen. So even though my success was using an alternative I quickly arrived at the idea that I would formulate a plan that included Kudzu, but also worked in O2 and eventually for when all else failed, Imitrex injections. Imitrex, so far, is very effective for those situations and seems to melt away the beast in minutes. Is it side-effect free? Does it damage anything else in my body? Maybe, maybe not, but I'm willing, at this point, to accept any outcome as my tolerance for CH seems to continue to degrade each year. As you see, I've still avoided the prevantative courses of treatment, so it's not like I don't keep one toe in the world of stubborn-ness, but maybe one day I'll go there too. For now, my strategy is working and the information I've got from this site has changed my life and outlook on life. Good luck in your decisions. Scott |
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Title: Re: To Med or Not to Med--That is the Question Post by Margi on Jul 13th, 2006, 11:31am on 07/13/06 at 09:16:59, seasonalboomer wrote:
Scott, I think my Mike has reached the same point you have because he just doesn't want to dance anymore without some weapons in his arsenal. However, he spent the first 20 years of his cluster career unmedicated and undiagnosed. His cycles came every six months for the first 10 years, lasting about 4 weeks. In his 30's, remissions extended to a year, cycles went about 6 weeks. We figured it was a good trade off. All he ever used was OTC stuff (including my brilliant idea of shoving mustard powder up his nose. REAL bad idea. :-/). Once did have a prescription for Imitrex pills that helped but made him terribly sleepy and queasy. Then, before he turned 40, we found this place and discovered oxygen. MAGIC!! And then we tried Doc Jerry's Water Treatment. Ended that cycle within 7 days. Another year of remission, then he Cluster Busted when he felt a cycle coming on. Extended that remission to almost 2.5 years. Then the beast got smart and he started a brutal cycle at Christmas. Tried to cluster bust again over 4 weeks and the beast mutated. By the end of January, he finally went to see a neuro who threw a wall of meds at him. Pred. Verapamil. Lithium. Imitrex spray. The pred gave him a few pain free days but also turned him into Super Jerk - to the point that he scared himself and will NEVER take it again. Imitrex sprays really helped but we noticed we started having WAY more attacks. Coincidence? Yeah, NO. That cycle lasted FIVE months. Preventatives extended the cycle? Yeah, YEAH. Since this cycle, he has become "silent chronic" in that he gets the "cluster eyes" every day at 4:30, lasting about 45 minutes. No pain but has had these daily phantom attacks for the last, oh, five years or so? One year remission, dancing again that winter. Once again, threw verapamil and imitrex and O2 at it. 7 months that time. One more year remission, tried the lithium pulsing method. Had 4 relatively pain free months of a cycle because of that, but then another morphing took place. The beast switched sides and that cycle went a full 9 months. He's "due" again this winter. Will he go with the prevents? Not a chance. Imitrex? Nuh-uh. Gonna try zomig, maybe, and oxygen only. There's a lot to be said for med-freedom. But it sure ain't for sissies. Even though his cycles were much much shorter when he didn't have meds, I could never ask him to do it again. (I didn't "ask" him back then, we just didn't know there WERE meds out there.) |
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Title: Re: To Med or Not to Med--That is the Question Post by floridian on Jul 13th, 2006, 1:07pm on 07/13/06 at 03:23:41, chopmyheadoff wrote:
But how good is that weapon? For some, very good. Others report excellent short term relief offset by more frequent headaches, more intense headaches, and longer cycles (not an issue if you are chronic, a big issue if you want to avoid going chronic). I think magnesium and melatonin are the most under-utilized therapies. If you have a magnesium deficiency (and a good chunk of us do) then you NEED magnesium. No prescription med will substitute for it - they might shut off the pain, but your health is suffering in other ways. And Clusterheads do not produce the normal amounts of melatonin, and that is a year round phenomena, even in episodics. These are two essential chemicals lacking in many clusterheads. If taking them doesn't give adequate control, then other approaches are needed. But how many docs will skip over magnesium and go straight to verapamil? How many general practitioners recommend melatonin instead of dismissing it as an unproven, over-hyped supplement? |
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Title: Re: To Med or Not to Med--That is the Question Post by LeeS on Jul 13th, 2006, 1:38pm on 07/13/06 at 13:07:18, floridian wrote:
Echo that Flo. Melatonin isn't even legal over here - despite the Institute of Neurology 'allegedly' recommending 'internet purchases' for sufferers. WTF? -Lee |
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Title: Re: To Med or Not to Med--That is the Question Post by Charlotte on Jul 13th, 2006, 1:53pm i've been misdiagnosed, diagnosed, and un-diagnosed. I have been a guiinea pig like most people here. I am currently using liquid kudzu extract and maxalt mlt. I only use between 1/4 and 1/8 of a maxalt mlt. In February, I started getting hit every 2 hours at about level 8. I changed Dr's, took Maxalt & Inderal which lowered it to a 6 until the end of the 4th week when it went back to back top of my scale & then subsided. Since then, I'm still about every 2 hours, varrying high & low cycles, varerying twice with one every hour for a day each, and another stetch of 4 days at every 1 1/2 hours. I stopped the Inderal in April, used 5 mg Paxil for awhile, overlapped with kudzu, and then dropped the paxil and kept the kudzu - with my Dr's approval. Now, that same Dr doesn't even remember speaking to me or emailing me 5 or 6 times, and thinks I'm still taking Inderal. The kudzu makes the difference between functional & non-functional. I don't think I would stop taking it, but I would stop taking the maxalt. Over the years, the patterns are similar with or without meds. My problem right now, even though I am functional & can work, I have trouble thinking & completing all my tasks. I forget things that are every day habits and have to relearn them. Charlotte |
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Title: Re: To Med or Not to Med--That is the Question Post by BobG on Jul 13th, 2006, 2:02pm Quote:
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Sansert is the only med I have ever taken. The last time was about 10 years ago. No other preventative or any abortives have I ever taken. Why? I didn’t know any better. I wasn’t told about them. Under-educated doctor and neurologist? My last, and worst ever, cluster was about 7 years ago. I was 52 years old. I have often wondered if my clusters would still be with me if I had spent the last 30 years loading up my body and brain with all the meds and combinations of meds available. By staying med free all those years did it send my clusters into remission at a young age? I don’t know. I have only been eposodic. If I had been chronic I’m sure my story would be different. If I should go back into a cluster now I think I will go with an alternative treatment rather than drug store products. |
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Title: Re: To Med or Not to Med--That is the Question Post by jenrob2006 on Jul 13th, 2006, 2:11pm I went virtually unmedicated for about 10 years. I had the crap stuff like fiorinal and some pain pills, percocet, etc., but nothing that helped. Four years ago was the first time I tried Imitrez injections. They were like a God-send until I realized all of the side effects. This present cycle, I tried to do sans meds because we do not have insurance yet (not until Sept). Finally after two straight 4 hour kip 10's and vomitting after the third hour, I decided I could not take it. I am newly married and I realized that I was scaring the crap out of my new husband who had never seen me like this. We decided whatever the cost, I was going to the neuro. It cost a lot and still is, but he has been giving me samples whenever he can. I used to think that I had a very low tolerance for paid and that is why I needed medication. Now I know that this is not normal pain. Do you use any kind of natural abortive like O2 or melatonin? |
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Title: Re: To Med or Not to Med--That is the Question Post by georgej on Jul 13th, 2006, 2:19pm on 07/13/06 at 14:11:56, jenrob2006 wrote:
I presume that the question was directed to me. Yes, I do use melatonin--normally 9 mg. I also take magnesium and calcium supplements. I've tried oxygen, but don't normally use it. Didn't seem to do much, although it helped some. That's it, though. Regards, George |
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Title: Re: To Med or Not to Med--That is the Question Post by seasonalboomer on Jul 13th, 2006, 2:45pm Re: O2 If you haven't tried it in some time you might find ti is worth reconsidering on the following points. - Years ago most doc's that ever would prescribe it often provided the wrong equipment -- either too low a flow or by not providing a non-rebreather mask. My Dad fell into this category. - You need 10-15 lpm flow rate and the kind of mask that has a bag on it and no holes that allow air through the mask when breathing in. All the intake is from the bag - pure O2. - Many of us have purchased a special mask that it's creator is calling a "ClusterMasx" which is a nice padded face mask and high flow capability. I swear by it. Some who have found limited results before with O2, after trying the higher flow and proper mask get the results they had originally hoped for. Or, in my case "this ain't my Daddy's O2"....... It might be worth a second look. Scott |
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Title: Re: To Med or Not to Med--That is the Question Post by georgej on Jul 13th, 2006, 3:18pm on 07/13/06 at 14:45:08, seasonalboomer wrote:
Thanks. I'm in remission now, but next go-around I may well do so. You're right--my use of oxygen was some years ago--just a regular mask and a flow rate that I'm guessing was around 7 lpm. Best, George |
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Title: Re: To Med or Not to Med--That is the Question Post by Katherinecm on Jul 14th, 2006, 1:02am When I'm cycling up I always think I'm getting a sinus infection. And constantly in childhood I was treated for sinus infections and pink eye. I guess I always had this I just never had KIP 10's until that fateful night I went to the ER with one. I'm chronic, and I get several 8+ per day. I would be suicidal without meds when I'm in such constant pain. But if I went back to being episodic? It would take a freaking 103 degree fever or a KIP 10 to inspire me to get treatment (I get up to 101 degree fevers when I get hit, so I can't assume from a fever that I'm sick). |
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Title: Re: To Med or Not to Med--That is the Question Post by MJ on Jul 14th, 2006, 2:47am Tough question. For over 20 years with CH I tried 98% of all the drugs mentioned on these pages and many more that I cant even remember. The next 10 years now 11 I took no more than an occasional aleve for CH. The reasons are several. One reason is I found that I could deal with the extreme pain much better and more importantly recover much faster without the aide of meds. wich never did a bloody thing for me anyways. The pain was as intense as ever but without meds its a cleaner and purer pain. I can isolate and concentrate better on the pain itself which strangely enough makes it easier to deal with as it becomes a trial of time vs. pain. Any treatment I did do "was" geared toward staying alert while not being hit which was not very often. Vitamin and Energy stuff with ephedrine, ginseng and the like. I love it when I can use that word "was" being hit because last year after reading about the CB reports I had to try one last time to rid myself of CH and successfull treatment was found for the first time and at last with RC seeds. Only time tells what success is. Hopefully seeds will continue to work for me. If not so be it. I know that for me and my CH I will never again use the conventional medications available today. Its not easy, just easier without. |
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Title: Re: To Med or Not to Med--That is the Question Post by E-Double on Jul 14th, 2006, 3:39am on 07/14/06 at 02:47:15, MJ wrote:
Exactly!!!! |
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Title: Re: To Med or Not to Med--That is the Question Post by Bob_Johnson on Jul 14th, 2006, 10:11am I knew a man in N.C. who died at 75 never having a water heater in his house. Why? Because his grandmother's heater exploded (when he was a young kid) and he never trusted them again. The second leading cause of cancer deaths in men is prostate cancer, although it's quite curable when men allow themselves to be diagnosed and treated. My point is this: decisions about medical treatments are fraught with human issues and technical/medical considerations which make easy and simple decisions--which are also judicious decisions--increasingly difficult. As the number of meds & treatments have multiplied and become more potent and effective, the more side effects we have to be aware of and learn how to manage--if we want the benefits they offer. It's simply an illusion to expect high levels of both effectiveness and freedom from side effects: it's just not in the cards. (More than one science type has commented that aspirin would never pass the FDA licensing process were is coming out today: too many side effects. I have the perspective of age to remember when major surgery was used to treat infections because antibiotics didn't arrive until I was just getting out of grammar school! Perspective is hard to develop and especially so when dealing with a complex area out of our common experience, e.g., medicine. We do have some good sources of information which only became readily to hand with the advent of the WWW. BUT even these resources can be a problem when we don't know the quality of the information or have the skills/experience to interpret what we find. Over the years of reading messages here I've often been anxious about the readiness of folks to manipulate drug doses, play with combinations of meds, and not report problems to their docs--and blow off a med as bad/useless. Even the most conscientious consumer will have some problems; the ignorant and flippant are setting themselves up for trouble. In the end, we are all confronted with trying to strike a balance between benefit and potential cost (cost being $, side effects, and degree of effectiveness). But I'm not about to give up on modern medicine because half a life time ago the picture was so limited and even grim! |
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Title: Re: To Med or Not to Med--That is the Question Post by georgej on Jul 14th, 2006, 11:44am on 07/14/06 at 10:11:37, Bob_Johnson wrote:
Conceded, and a very good point, Bob. I believe that there are many ways in which modern medicine has dramatically altered the outcome of disease--antibiotics, vaccination, surgery and chemotherapy for lethal scourges that killed our ancestors. Would I use those therapies if my life was endangered? Without any hesitation. But, I think, there are many areas within modern medicine where effective therapies do not exist, and where the pharmacopia employed is little more effective than witch doctoring. Crude stuff--perhaps marginally effective. I also believe that where marginally effective therapies can be utilized by the people we trust (physicians) that decisions made on our behalf are not always wise. Who among us who've reached a "certain age" hasn't cared for someone who is helpless and has been hospitalized? How many of us have discovered that we, or someone else, must often mediate as an advocate for that helpless person while they're in the hospital to ensure that they receive even minimal services to ensure their comfort? Who hasn't observed medications in a clinical setting thrown willy-nilly at a medical problem without regard for potentially lethal consequences? People die every day from the careless application of prescription medicines. People who'd be alive if nothing had been done at all. My point is simply that we have to educate ourselves and take responsibility for the things that are used on us and done to us in the name of "modern medicine". The process itself cannot simply be accepted on trust. We are ultimately responsible for accepting or rejecting the therapies on offer. We are responsible for our own lives. In the specific case of CH: To begin with, cluster headache is, in itself, not fatal. There is unbelievable pain associated with it, but it won't kill us. To me, that raises the bar right there--any treatments that I accept should demonstrate maximum effectiveness with minimum consequence. Are the treatments on offer today for CH highly effective with inconsequential side effects? I am not convinced that they are. By this measure, has the therapeutic picture for a CH patient changed significantly in the last forty years? I am not convinced that it has. This is only my own reasoning on this issue, and reflects only my own decision. Please do not think I am attempting to persuade anyone else to my way of thinking. Or that I'm flaming anyone on any level for decisions they've made regarding their own treatment. I just think that the question of whether or not to use medications for cluster headache is an interesting one, and that it is interesting to see what people think about it. Someone (I can't remember who) said recently on the board that the thing about CH is that it really makes CH'rs think about things. It's a pleasure to talk to thoughtful people. Respectfully, George |
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Title: Re: To Med or Not to Med--That is the Question Post by brady713 on Jul 14th, 2006, 8:00pm When it comes to a KIP10 to med or not is almost like suicide or not. I'm talking about rescue meds not preventative. |
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Title: Re: To Med or Not to Med--That is the Question Post by Charlotte on Jul 14th, 2006, 8:15pm Now that's a term I understand. There are no rescue meds in California. I am having a good day, today. It is thanks to people here, not thanks to my doc. I thought my new doc was really doing well and willing to at least learn about ch but he wasn't. Charlotte |
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