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Hi Richard, I am very sorry for all that you and your wife have had to go through. Your wife’s story is a very sad one. Personally, I hope that on Monday your wife gets back her fiorinal so that she can live again. The only thing I’d worry about is if she keeps needing more and more of it, as 160/mo is already a lot. Since the fiorinal works, then I think it would be criminal not to give it to her and leave her in constant pain. Let the doctor walk a mile in her shoes and see if he himself would not want the fiorinal. Best wishes to you and your wife. Please let us know how her appointment goes on Monday. Oh, and one more thing … your wife is incredibly lucky to have such a caring and supportive husband. Joan ~~~Blackbelt in Migraines~~~ – Hide quoted text — Show quoted text – Hello again group! My wife gets chronic headaches and has just been through treatment with long acting narcotics after nothing else was found to help. Well, this didn’t help either. She got very little relief with any type of opiate and the list was : Oxycontin, Mscontin, Duregic patch, and the last straw, Methadone. She gets allergic reactions to the Triptan meds (hives, trouble breathing) and of course has tried most every other form of "treatment". The only med that has allowed her to function has been fiorinal which she has been using now for about eight years. She also needs Demerol shots during her Time of the month migraines. For the first 5 or 6 years she was managing on about 75 fiorinal per month and about two or three shots. Two years ago she found herself getting more migraines and the 75 pills were not lasting. This put her in conflict with her Doctor since she began coming in more often for Demerol shots since she was out of Fiorinal before the month was done. His solution was to pull out the rebound theory and decide it was time to go cold turkey. Well, that worked swell. She was in even more pain for over a month and took major time off work. She passes out when she is in extreme pain and that’s what she did a number of times during her period. After I had a mini-breakdown her doctor relented and allowed her back on the 75 fiorinal. Of course she still wasn’t managing on this amount. We struggled on for months like this while we searched for alternative treatments that included the estrogen patch. We finally found a new more caring Doctor who has been trying to help my wife find some relief. He made it clear that he was not comfortable treating this condition and really has been trying to refer us to others who are expert in pain and headache treatment. In the meantime he prescribed more Fiorinal and my wife was using about 40 per week. She was still getting Shots every month also, about three or four. Not an ideal solution I thought! I read that many chronic pain patients were on long acting narcotics and thought maybe my wife should be on that instead of the Fiorinal since it was something you could increase if the pain wasn’t being controlled. I got the name of one Doctor in our general area and tried to make contact. He was very hard to get to see. He worked out of the local Addiction center. He treats pain and addiction. My wife had to go through an assessment and was made to go into a sort of detox center for over a week to be taken rapidly off the fiorinal. This was in my opinion just bullshit. They could have easily tapered her off the Fiorinal while they introduced the new stuff. Now she has this on her medical record and every new Doctor she sees is going to think she has an addiction problem. If I’d known how her treatment would have turned out I’d have told them to shove it up their you know what. We finally saw the great man and her put her on Oxycontin and percocet for breakthrough. Guess what? It didn’t work nearly as well as Fiorinal. Even upping the dose didn’t help. She just experienced, for the first time, withdrawl when she needed her next dose of Oxycontin. The percocet gave her an unwelcome buzz and only worked for less than an hour. The Addict doctor felt my wife belonged at the clinic nearby where they treat non-malignant chronic pain. We agreed whole-heartedly. Going to his office was bloody depressing. Heroin addicts would be pacing around jumping out of their skins waiting for the Methadone and cussing out the staff and each other. The new place was in a Local Hospital and I was very hopeful. We saw the new guy and he started my wife on Mscontin and a few other breakthrough meds. After a couple of months and poor relief he let her use Fiorinal for breakthrough. It worked so well that she asked to get off the Mscontin after a month since all it did was give her the withdrawl symptoms and she couldn’t see it doing anything for pain. He also allowed her Demerol shots for me to give her at home. This seemed like a good idea but it didn’t work out too well. She’d come home from work and still be in some pain and I think that the idea that complete relief was so available was too tempting. I gave her the shots, she would rest a bit and then run about doing home chores. Her new Doctor allowed her some more the next month. I was getting concerned and I pushed to have her see the more senior Doctor at the clinic. The new Doctor was all business and right off the bat decided to cut out the fiorinal and the shots. My wife would have to try Methadone since we’d not tried that yet. My wife went on this stuff for over a month. She was to try and increase the dose and had to stop work in order to start this treatment. After two months she was up to the most she could tolerate with no breakthrough meds. She got no pain relief but she had the worst withdrawl symptoms ever. Since that didn’t work she now had to taper off this crap. That meant she was still off work. Withdrawl was very unpleasant. She felt like she was going nuts. Skin crawling etc. She finally stopped all Methadone just before Xmas. The new plan was that rebound was her problem and she had to go without any pain medication. She allowed some Fiorinal for the Time of the Month and my wife was not to have any Demerol shots. I ignored that bullshit order and took my wife to our local clinic when she was fainting during her period. So here we are now in February. My wife is still in pain every day. Some days worse than others of course. Her period is of course a nightmare for migraines. The rest of the time it’s just constant level 4 or 5 head pain. Enough that she couldn’t function at work and can’t do much at home. When she gets some Fiorinal it’s like someone flipped a switch. She’s up and able to do anything. When you ask these Doctor’s how long before the headaches improve they won’t commit. My wife was on these short acting meds so long they say so it will take a long time to beat the rebound headaches. So, three going on four months isn’t doing it yet. My wife want’s to get back to work. If she has to take Fiorinal every day she’s willing to if nothing else out there works. The alternative is to live under the covers of your sickbed. We’re seeing her regular Doctor on Monday at which time we hope to convince him to allow her back on what she needs to function. If he refuses then my wife will have to quit work or find another Doctor who will treat her pain with whatever works. What would you guys do? These bloody experts should feel the pain just once for themselves before they withhold relief. That’s what my wife says. If I’d seen any improvement during these three months I might try and convince her to continue with this treatment. There is no magic cure for my wife. She knows what works for her. She knows what doesn’t. Maybe when they learn what causes these fiendish attacks they will find the key which turns them off. We can’t tolerate this existence anymore. Thanks for listening. Feel free to respond. Richard the Hubby
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Richard: Your post was very disturbing to read. It’s another case that proves that the medical community has a long way yet to go in coming up with an adequate pain medication that stops ALL the pain without being addictive. I know I have no where near the severity of pain as a lot who post on this ng. Mine is a burning pain. I’ve had it for years. Sometimes I burn so bad that it’s hard to be rational about things. It’s been my experience, after many many years of pain, that pain is a no-win situation. One either can find a good pain specialist who uses narcotics for pain relief or one can take the less than the big-time narcotics, get some pain relief (take the edge of pain off) and live with quite a bit of pain. Either way is not good. Narcotics, as most know…….regardless of what some think that if your really in pain then narcotics aren’t addicting……is very addicting and can have serious side effects (and usually sooner or later produces those side effects, such as causing difficult in breathing or stopping breathing entirely). I thank God that there are pain medications. It’s just very sad, and wrong, for them to ease the pain yet play such havoc mentally and physically. Seems to me that out of all the intelligent people in the world that someone would come up with a pain killer that’s not addictive and with no side effects. In my case most pain medications produce severe itching. The stronger narcotic pain medications such as fentanyl produce, in me, breathing problems. It’s dang if you do and dang if you don’t type situation. I do wish your wife adequate pain relief very soon. I’m on your side. It’s obvious, and aggravating, that present day pain treatment isn’t worth a dime. It’s obvious from all the posts from those who take mscontin, oxycont, morphine, fentanyl, etc. and still are in severe pain. That includes myself……I try to get by with Lorcet 10/650 and alprazolam and Darvocet 100 for minor pain……even then I still have bad burning pain. If those medications don’t do the job I have to be hospitalized for pain injections. I think most who use pain medications can truthfully say that they are ever totally pain free. If there are any out there I bet they’re only pain free for a very short while. This post of mine probably means zero but I just wanted to vent about someone needs to get serious about finding an adquate pain medication. It’s nearly as if the medical community don’t want to find a pain stopper……think of the money they would lose from selling the myriads of pain medicine! Take care.
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I can relate to the pain. I have cluster headaches and in between I have what the Doctors say are migraine. I believe there is a strong relationship between the different headaches and the names are just a way to catalog. It is my firm belief that we as sufferers of this disableing pain must join together and lead the study and research for a full understanding of headaches. Basically the headache organizations that now operate serve the system we have for treatment. We need an organization totally dedicated to finding a cure. Maybe it won’t be in our life time but our children and grandchildren will benefit. I need help to find grant money to get this started. I also need support of members. You understand the loss of life as we want to live so we will not loose sight of our single objective. Will you help? Check http://www.galaxymall.com/retail/headache_free . Together we can get this moving and hope the results are quick so we to can enjoy this freedom of pain. Dick Before you buy.
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Boxing, Ask your physician to consider Indomethacin 50 mg suppositories. We are seeing some real relief with this therapy when all others are failing. 1/3 suppository inserted, and repeated after 1 hour up to 3 doses has been very effective in some patients. It is worth a try. Fiorinal does cause rebound headache in many patients, and the butalbital is addictive as well. This is worth discussion with her Dr. You have permission to print this post and take it in with you. We have 3 patients on this therapy, and the effect has been clinically significant. Hope this is helpful. Dave/
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Richard, I am close to the same situation, see post on Migraine/HA/NeuroLyme… My wife got her first 36 hours off yesterday, but is now suffering again. She will be going to the Jefferson Hospital Headache Center in March (typical 2 month waiting list) for evaluation and treatment. They use an in-hospital treatment with dihydroergotamine to desensitize the brain circulatory system. You can find some articles in Pubmed by searching dihydroergotamine and Silberstein here’s one direct reference page. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1446987&form=… m&Dopt=b Other HA clinics use this treatment, is there one near you? Harvey the hubby, too
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Dear Richard and Wife, I held my breathe while reading your post. Trying to help by asking, About where do you live: East Coast, Middle USA, West coast, NE coast, SE coast, North Middle USA. Near any BIG City. If you could sort of say without saying(all of you know what I mean) maybe I would have a name or place. Me, I’m going to bed now. One laugh? I do not have the#&$&& to change my clock, so fall back 1 hour. Prayers and Peace. Where? * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
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Alec: You are correct in stating the breathing difficulty is due to overdosing. But I was talking about taking the correct dosage, as prescribed, and that produces the breathing difficulty in me and a lot of other people. I have never, and don’t plan to in the future, od on pain medications. I’ve taken darvocet, vicodin es, and lorcet 10 for several years…….mainly making an effort to just use the darvocet to edge off the pain and continue to hurt but obviously to a tolerable but uncomfortable level. I usually have my blood checked, complete chemistry, at least twice a year and so far apparently my liver is still clicking along. I hope I never have the choice, but if I did have to choose between the two of stopping breathing or liver damage or "gut" damage, I would every time choose the liver or gut. STOPPING BREATHING tends to be hazardous to one’s health……as in biting the dust (nearly immediately). Kinda silly to carry this on but I wanted to respond to your reply. I’m on your side and all the others on this ng. I was stating a fact, and it is a fact, that narcotics are a bitter/sweet partial solution to pain and that it’s a shame that the "brains" in this world can’t come up with a "stop pain completely" medicine with no side effects and/or addiction. Take care.
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I had the DHE treatment in January. The frequency of the migraines had decreased yet when they do come on they are much worse. Good luck to your wife on this. Steve Richard, I am close to the same situation, see post on Migraine/HA/NeuroLyme… My wife got her first 36 hours off yesterday, but is now suffering again. She will be going to the Jefferson Hospital Headache Center in March (typical 2 month waiting list) for evaluation and treatment. They use an in-hospital treatment with dihydroergotamine to desensitize the brain circulatory system. You can find some articles in Pubmed by searching dihydroergotamine and Silberstein here’s one direct reference page. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1446987&form=… m&Dopt=b Other HA clinics use this treatment, is there one near you? Harvey the hubby, too
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Sorry — on that last message I meant that my migraines < have decreased since the DHE treatment. Prior to the treatment in January, they had escalated to every day from October through December. I had the DHE treatment in January. The frequency of the migraines had decreased yet when they do come on they are much worse. Good luck to your wife on this. Steve Richard, I am close to the same situation, see post on Migraine/HA/NeuroLyme… My wife got her first 36 hours off yesterday, but is now suffering again. She will be going to the Jefferson Hospital Headache Center in March (typical 2 month waiting list) for evaluation and treatment. They use an in-hospital treatment with dihydroergotamine to desensitize the brain circulatory system. You can find some articles in Pubmed by searching dihydroergotamine and Silberstein here’s one direct reference page. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1446987&form=… m&Dopt=b Other HA clinics use this treatment, is there one near you? Harvey the hubby, too
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- Hide quoted text — Show quoted text – Richard: Your post was very disturbing to read. It’s another case that proves that the medical community has a long way yet to go in coming up with an adequate pain medication that stops ALL the pain without being addictive. I know I have no where near the severity of pain as a lot who post on this ng. Mine is a burning pain. I’ve had it for years. Sometimes I burn so bad that it’s hard to be rational about things. It’s been my experience, after many many years of pain, that pain is a no-win situation. One either can find a good pain specialist who uses narcotics for pain relief or one can take the less than the big-time narcotics, get some pain relief (take the edge of pain off) and live with quite a bit of pain. Either way is not good. Narcotics, as most know…….regardless of what some think that if your really in pain then narcotics aren’t addicting……is very addicting and can have serious side effects (and usually sooner or later produces those side effects, such as causing difficult in breathing or stopping breathing entirely).
Opiates are addicting only if taken in doses large enough to totally overcome the pain and bring on the euphoric side-effects. Of course the doctors who verified this must be wrong according to opiophobes who never bother with facts. As for the "stopping breathing" side-effect – how different is it to blowing out your liver on Tylenol, or your gut on Advil? The "Breathing Difficulty" side effect is due to overdosing and otherwise very rare – less dangerous than Advil. I thank God that there are pain medications. It’s just very sad, and wrong, for them to ease the pain yet play such havoc mentally and physically.
No havoc here. I’m able to function all day long, from 8 AM thru 2 AM – my normal hours. The only side-effects are lowered blood pressure, which means that I take less BP meds, and constipation if I don’t consume enough fiber. Plus, of course, greater relaxation when I sleep. According to my wife, it’s even reduced my apnea enough that a simple decongestant nasal spray can replace my CPAP machine. Seems to me that out of all the intelligent people in the world that someone would come up with a pain killer that’s not addictive and with no side effects.
Morphine, Oxycodone, Methadone… With absolutely no side-effects? No possibility of that. In my case most pain medications produce severe itching. The stronger narcotic pain medications such as fentanyl produce, in me, breathing problems. It’s dang if you do and dang if you don’t type situation.
You generalize your problems. While you have them, others don’t. For instance, celebrex exacerbates my tendency towards edema, which is handled by my diuretic that I take anyway and gout, which is handled by allopurinol, that happens to strengthen the effects of the morphine. I do wish your wife adequate pain relief very soon. I’m on your side. It’s obvious, and aggravating, that present day pain treatment isn’t worth a dime. It’s obvious from all the posts from those who take mscontin, oxycont, morphine, fentanyl, etc. and still are in severe pain. That
Yes – if you count the fact that I’m not in pain now but walking grinds the bones in my hip together and hurts for the first 3 or 4 steps after standing up. If I took enough to blank that I would be addicted, but instead I’m just out of pain 95% of the time. I think most who use pain medications can truthfully say that they are ever totally pain free. If there are any out there I bet they’re only pain free for a very short while.
Not for all of us, but I need several meds in concert to do it. His wife may need some special combo. My doctor didn’t nail the problem on day one, either. It takes time to get the right mix.
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Boxing, Your wife is so lucky to have such a caring understanding husband! Reading your letter brings tears to my eyes because it hits so close to home. I take fiorinal, too and sometimes it works if I catch it in the very beginning. If that doesn’t work I do Stadol nasal spray and if that doesn’t work it’s time to break out the big boys(shots of Demerol). My headaches, like your wifes I suspect are at there worst during THAT time of the month. I’ve tried 4 or 5 different types of birth control pills, esrogen pills and patches and nothing works. It’s very frustrating for the whole family when you live your life around a medical condition. And yes, they can try and try new things but unfortunately, the only thing that truly takes pain away are narcotics. So what to do?-Cat * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
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Hello Richard, I am so sorry for you both. A friend of mine (male) has had migraines since childhood. He had to finally apply for disability (after it was fully documented). This documentation was collected by a caring psychiatrist and he also attended an in-care treatment centre where they tried a variety of meds (30 days I believe), saw that the drugs were not helping and declared him "disabled". It was called Homewood in Guelph, Ontario…very expensive, but his work insurance paid for it (and/or Workers Comp). It also cleared up the "issue" of "addiction" formally on paper. At times, he is able to go directly to hospital and obtain an injection of, I believe, Imitrix (sp?) but he tries to "ride out" the pain. He says that when there’s a change in barometric pressure, he feels the onset. Sometimes starts as strange eye problems (aura?). The last I heard, he was investigating the possibility that some foods (dyes, MSG etc) might be causing the onset of such (allergies). She might want to try an elimination diet. There’s lots of info about this on the ‘net. In addition, another friend was having migraines and discovered that perfumes and air fresheners etc were either causing and/or exacerbating the problem..(another elimination tactic). Onset of "monthlies" will exacerbate any medical condition. I had them for two years during puberty. They re-started at age 30 (when my thyroid acted up and I was under a lot of life stresses). Also found this http://www.migraine.ca/HPYLORI.HTM http://www.migraine.ca/ccsiteinfo.htm The male friend for quite a time, kept a daily diary (weather, foods he ate, environmental exposures, stresses) trying to see if there was a pattern. He also practices Yoga which he feels helps somewhat. She might try this also. You don’t mention her age, whether she’s had them all her life or when they started (what was happening in her life at the time). I am assuming that she has had proper tests to eliminate possible physical problems? Since stress can be a precipitating factor, has she tried a low-dose tricyclic to see if that might make any difference in preventing onset? http://www.diseases-explained.com/migrainetreatmen.html You don’t mention any other medical conditions. I noticed on other NGs some complants about headache/migraine concurrent with thyroid meds (Synthroid). here’s a checklist http://www.scionofzion.com/migraine.htm trigger foods http://www.eatright.org/nfs/nfs48.html http://www.alphanutrition.com/headache/index.htm Just some thoughts. Best wishes Jean
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Oh my God, Richard. I read your post with tears in my eyes and a sick feeling in my stomach. You poor things. I just can’t imagine how awful this must be for the both of you. I wish I could give you some medical advice, but you already know way more than I have ever had to learn about pain management. I just wanted to let you know that your dedication to your wife, and her incredible strength in continuing to fight, is inspirational. I hope you can find some answers soon. ((((((((((((((((((Richard and his Wife))))))))))))))))))))))) Warm hugs, Starbug
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Hello again group! My wife gets chronic headaches and has just been through treatment with long acting narcotics after nothing else was found to help. Well, this didn’t help either. She got very little relief with any type of opiate and the list was : Oxycontin, Mscontin, Duregic patch, and the last straw, Methadone. She gets allergic reactions to the Triptan meds (hives, trouble breathing) and of course has tried most every other form of "treatment". The only med that has allowed her to function has been fiorinal which she has been using now for about eight years. She also needs Demerol shots during her Time of the month migraines. For the first 5 or 6 years she was managing on about 75 fiorinal per month and about two or three shots. Two years ago she found herself getting more migraines and the 75 pills were not lasting. This put her in conflict with her Doctor since she began coming in more often for Demerol shots since she was out of Fiorinal before the month was done. His solution was to pull out the rebound theory and decide it was time to go cold turkey. Well, that worked swell. She was in even more pain for over a month and took major time off work. She passes out when she is in extreme pain and that’s what she did a number of times during her period. After I had a mini-breakdown her doctor relented and allowed her back on the 75 fiorinal. Of course she still wasn’t managing on this amount. We struggled on for months like this while we searched for alternative treatments that included the estrogen patch. We finally found a new more caring Doctor who has been trying to help my wife find some relief. He made it clear that he was not comfortable treating this condition and really has been trying to refer us to others who are expert in pain and headache treatment. In the meantime he prescribed more Fiorinal and my wife was using about 40 per week. She was still getting Shots every month also, about three or four. Not an ideal solution I thought! I read that many chronic pain patients were on long acting narcotics and thought maybe my wife should be on that instead of the Fiorinal since it was something you could increase if the pain wasn’t being controlled. I got the name of one Doctor in our general area and tried to make contact. He was very hard to get to see. He worked out of the local Addiction center. He treats pain and addiction. My wife had to go through an assessment and was made to go into a sort of detox center for over a week to be taken rapidly off the fiorinal. This was in my opinion just bullshit. They could have easily tapered her off the Fiorinal while they introduced the new stuff. Now she has this on her medical record and every new Doctor she sees is going to think she has an addiction problem. If I’d known how her treatment would have turned out I’d have told them to shove it up their you know what. We finally saw the great man and her put her on Oxycontin and percocet for breakthrough. Guess what? It didn’t work nearly as well as Fiorinal. Even upping the dose didn’t help. She just experienced, for the first time, withdrawl when she needed her next dose of Oxycontin. The percocet gave her an unwelcome buzz and only worked for less than an hour. The Addict doctor felt my wife belonged at the clinic nearby where they treat non-malignant chronic pain. We agreed whole-heartedly. Going to his office was bloody depressing. Heroin addicts would be pacing around jumping out of their skins waiting for the Methadone and cussing out the staff and each other. The new place was in a Local Hospital and I was very hopeful. We saw the new guy and he started my wife on Mscontin and a few other breakthrough meds. After a couple of months and poor relief he let her use Fiorinal for breakthrough. It worked so well that she asked to get off the Mscontin after a month since all it did was give her the withdrawl symptoms and she couldn’t see it doing anything for pain. He also allowed her Demerol shots for me to give her at home. This seemed like a good idea but it didn’t work out too well. She’d come home from work and still be in some pain and I think that the idea that complete relief was so available was too tempting. I gave her the shots, she would rest a bit and then run about doing home chores. Her new Doctor allowed her some more the next month. I was getting concerned and I pushed to have her see the more senior Doctor at the clinic. The new Doctor was all business and right off the bat decided to cut out the fiorinal and the shots. My wife would have to try Methadone since we’d not tried that yet. My wife went on this stuff for over a month. She was to try and increase the dose and had to stop work in order to start this treatment. After two months she was up to the most she could tolerate with no breakthrough meds. She got no pain relief but she had the worst withdrawl symptoms ever. Since that didn’t work she now had to taper off this crap. That meant she was still off work. Withdrawl was very unpleasant. She felt like she was going nuts. Skin crawling etc. She finally stopped all Methadone just before Xmas. The new plan was that rebound was her problem and she had to go without any pain medication. She allowed some Fiorinal for the Time of the Month and my wife was not to have any Demerol shots. I ignored that bullshit order and took my wife to our local clinic when she was fainting during her period. So here we are now in February. My wife is still in pain every day. Some days worse than others of course. Her period is of course a nightmare for migraines. The rest of the time it’s just constant level 4 or 5 head pain. Enough that she couldn’t function at work and can’t do much at home. When she gets some Fiorinal it’s like someone flipped a switch. She’s up and able to do anything. When you ask these Doctor’s how long before the headaches improve they won’t commit. My wife was on these short acting meds so long they say so it will take a long time to beat the rebound headaches. So, three going on four months isn’t doing it yet. My wife want’s to get back to work. If she has to take Fiorinal every day she’s willing to if nothing else out there works. The alternative is to live under the covers of your sickbed. We’re seeing her regular Doctor on Monday at which time we hope to convince him to allow her back on what she needs to function. If he refuses then my wife will have to quit work or find another Doctor who will treat her pain with whatever works. What would you guys do? These bloody experts should feel the pain just once for themselves before they withhold relief. That’s what my wife says. If I’d seen any improvement during these three months I might try and convince her to continue with this treatment. There is no magic cure for my wife. She knows what works for her. She knows what doesn’t. Maybe when they learn what causes these fiendish attacks they will find the key which turns them off. We can’t tolerate this existence anymore. Thanks for listening. Feel free to respond. Richard the Hubby
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