Question:
I just wondered if Topomax is covered by medicaid. I have gained 35 pounds so far on my meds and am desperate to lose weight. Dieting makes no difference. Right now I’m trying conjugated linoleic acid, but as yet, I see no change. Thanx for your help. Peace Starchild
Response:
Hi there Billy, I am aware of 23 other mood stabilizing medications (not including Depakote and lithium carbonate) Could you provide a list of those?
I am in the process of updating them and will post them as soon as I have finished with my MedLine search of the latest publications. Also included will be my revised conservative titration protocols for the Modern mood stabilizers (to prevent the problems caused by the PDR anticonvulsant protocols). I’ve tried 4 different stabilizers, with no great effect. I can’t tolerate Depakote at a high enough dose to be effective, so I take a smaller amount and it’s marginally effective. Neurontin has no effect on me. Lamictal gave me a systemic rash. Topamax turned me into a totally different person. It made me severely suicidal.
With some patients with BP it is just as critical HOW a mood stabilizer is prescribed as WHAT is prescribed!!! I would be willing to bet that your pdoc followed the PDR anticonvulsant protocols with you. Since these suggested (NOT required!) titration schedules are for SEIZURE Disorder – NOT BIPOLAR Disorder, many of us (approximately 25%) are incorrectly dosed with them. I was one such. The difference lies in the dosage loading (too fast) and the frequency (too infrequent) of the doses. (1) Due to Neurontin’s very short half life, it needs to be taken in equal amounts every 6 hours. Start with 100 mg capsules – rather than the 300 mg that the PDR recommends. Pregabalin (Son of Neurontin) will supersede Neurontin and will probably be FDA approved sometime in 2001. It will have improved mood stabilization, antianxiety, anti-socialization phobia, and analgesic properties as well as a much longer half life. (2) The rashes due to Lamictal can likely be avoided by starting with 25 mg tablets and slowly increasing the dose taking it BID. (Although the half life is sufficiently long to permit once daily dosing, you will likely reduce side effects by taking smaller doses more frequently.) Do not exceed 200 mg (although some can tolerate 400 mg). Apply sun blocker with a high SPF whenever out of doors in the sun. Avoid antibiotics containing penicillin derivatives. Do NOT give Lamictal to children under the age of 16. Report any rashes immediately to your doctor! In the rare event of Stevens-Johnson Syndrome rash it must be treated by a dermatologist who is familiar with it – because it can be FATAL! (3) With Topamax always start with 25 mg pills and do not divide or crush them. Slowly increase the dose BID to a maximum of 200 mg. If you exceed 200 mg, you run the risk of developing painful kidney stones. Drink plenty of water. It is a powerful appetite suppressant so it should be avoided by those who do not wish to lose weight. It has recently come to my attention that Topamax can cause an EXTREMELY SERIOUS VISION PROBLEM called: "Bilateral-Angle Closure Glaucoma" – which if not treated quickly and effectively, can lead to PERMANENT BLINDNESS! So be sure to immediately report any vision changes! For important details please be sure to read: http://www.eyeworld.org/nov00/1100p08.asp (4) I am a Great Believer in polypharmacy (the combination of two mood stabilizers) where the combined effects become greater than the sum of its constituent components. Many progressive pdocs are finding that their patients who do not respond adequately to a single mood stabilizer, are responding most favorably to this approach. There is evidently synergism involved. Depakote (divalproex sodium) commonly causes both weight gain and hair loss. I have been taking Depakote ER (extended release) for about 3 months now. Before that, I was gaining about 30 pounds in 6 months. I haven’t gained any weight since switching to the ER form. However, it should be noted that the ER form is currently approved by the FDA for use for migraines. But in my experience, it does work for bipolar.
That is not only MOST interesting – it is also MOST puzzling (assuming that you are now taking the same amount of immediate release Depakote and Depakote ER and that you are eating and exercising the same)! From my reading of:
http://www.rxabbott.com/pdf/depakote.pdf Depakene (valproic acid), Depakote (divalproex sodium), and Delayed-Release Depakote (Depakote ER) all result in the same valproate ion. The only difference is the RATE at which the disassociation process occurs. Please correct me if my understanding of the biochemistry involved is incorrect. If you further examine this 21-page document, no differentiation is made among the side effects between Depakote and Depakote ER. In fact NO MENTION WHATSOEVER is make of Depakote ER side effects! To me this implies that Abbott Laboratories does not expect any differences to be shown between the meds insofar as the side effects are concerned. One thing I found MOST strange: only 8% reported gaining weight on Depakote! See Table 2 on page 15. I would have thought that at least 50% did from the number of complaints I have read. Of course one hears more about adverse consequences than the positive ones. Perhaps nausea (31%), dyspepsia (indigestion – 13%), diarrhea (12%), vomiting (11%), and abdominal pain (9%) had something to do with keeping the test subjects’ weight gain down? Another interesting observation is that Depakote was tested and found effective for MANIA – but no mention was made of DEPRESSION. I wonder why not? It is most certainly used to treat both ends of the bipolar spectrum. Regards, Billy
Best wishes for better meds properly prescribed from, James D. Milton, Ph.D., Sc.D. — Standard Disclaimer It should be very clearly understood that I make no representations to being a physician. Any opinions stated should NOT be considered as medical advice! They are based entirely upon my education, research, personal experiences, and the experiences of numerous individuals. You should confirm any suggestions made with your physician who is SOLELY responsible for prescribing ALL medications and carefully monitoring the patient’s progress. Make NO changes in your prescribed dosage regimen without first obtaining the approval of your doctor!
Response:
I am aware of 23 other mood stabilizing medications (not including Depakote and lithium carbonate) – so your pdocs are either:
Could you provide a list of those? I’ve tried 4 different stabilizers, with no great effect. I can’t tolerate Depakote at a high enough dose to be effective, so I take a smaller amount and it’s marginally effective. Neurontin has no effect on me. Lamictal gave me a systemic rash. Topamax turned me into a totally different person. It made me severely suicidal. Depakote (divalproex sodium) commonly causes both weight gain and
hair loss. I have been taking Depakote ER (extended release) for about 3 months now. Before that, I was gaining about 30 pounds in 6 months. I haven’t gained any weight since switching to the ER form. However, it should be noted that the ER form is currently approved by the FDA for use for migraines. But in my experience, it does work for bipolar. Regards, Billy
Response:
Who is/has been on Depakote that HATES it??? I was on it once before and I hated it then, and hate it now. What are you taking instead of it??? I’m tired of the docs insisting this is all that will work with me without at least giving something else a try. I do know that my sodium level runs high anyway and they don’t want me on lithium.
I am aware of 23 other mood stabilizing medications (not including Depakote and lithium carbonate) – so your pdocs are either: (1) Not telling you the truth. Or else they (2) Are abysmally ignorant. Take your pick. Either way I strongly suggest that you get a Second Opinion from a competent pdoc (psychiatrist or psychopharmacologist)! First check to ensure that a horse and buggy is not parked out behind the office before entering! If so – you can be assured that your treatment will be commensurate with the pdoc’s mode of transportation. Depakote (divalproex sodium) commonly causes both weight gain and hair loss. To offset the former, I suggest a regular program of exercise appropriate for your age and physical condition. To counteract the latter, I suggest taking selenium tablets available OTC (Over The Counter) at any large drugstore. There is also a potential decrease in your blood platelet level – so I suggest having that monitored whenever you have your valproic acid level periodically measured. Although I sustained a moderate platelet decrease when taking Depakote, it was not nearly so severe as when I took Tegretol (carbamazepine). FYI when I took lithium and Depakote, I gained 100 pounds. I suffered significant cognitive deficits on these two meds and wound up a homeless bum living on the streets. Admittedly not everyone has such adverse reactions. Some people do quite well on Depakote and lithium. We represent opposite reaction polarities. IMO the Modern mood stabilizers (Neurontin, Lamictal, and Topamax) are light years ahead in terms of their mood stabilization effectiveness than the old mood stabilizers (lithium, Depakote, and Tegretol). In general their adverse side effects are significantly less. However the Modern meds are more expensive. But since almost all pharmaceutical companies have Patient Assistance Programs for those who do not have insurance to cover their meds, this should not be a problem. Being indigent (thanks to lithium and Depakote), I get all of my meds free of charge. FYI I take Neurontin (which restored much of my cognitive abilities) and Topamax (which is responsible for the loss of 80 of the 100 pounds that I gained on lithium and Depakote). But forever lost to me are my wife, my profession, my home, my car, my plane, all of my material possessions, etc. I now live on food stamps in a government housing project. Best wishes for better meds and better doctors from, James D. Milton, Ph.D., Sc.D. — Standard Disclaimer It should be very clearly understood that I make no representations to being a physician. Any opinions stated should NOT be considered as medical advice! They are based entirely upon my education, research, personal experiences, and the experiences of numerous individuals. You should confirm any suggestions made with your physician who is SOLELY responsible for prescribing ALL medications and carefully monitoring the patient’s progress. Make NO changes in your prescribed dosage regimen without first obtaining the approval of your doctor!
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I was on depakote for all of two weeks before my doctor took me off of it because it made me worse instead of better. Everyone I have ever known who was on depakote had the zombie effect AND developed tremors that interfered with their ability to control their motor skills. That is why I call it Depakill. Also if you are on depakote remember you MUST have blood tests periodically for depokote levels in your blood and for possible liver damage. This is essential. Ralph
I think Ralph it really depends on the dosage as to what a drug will do to you. Depakote never zombified me, in fact I think I was still manic on it or off it. I didn’t have any tremors but I have seen people with them and they usually were on Lithium too. So I was always of the opinon that it was the Lithium that caused the tremors. But it could also be the combo. It’s hard to get a real assesment of what is going on when there is a combination of drugs involved. Vicky
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Well I took 1000mg last night for the 1st time. The first 2 hours no diference, then all the sudden BAM! I was in bed watching TV and I felt kind of like I was asleep, yet semi awake, kind of like when you goto the Dentist and they give you that stuff where you are asleep yet paralized, kind of weird, i wanted to get up and turn on the radio "Art Bell, Coast 2 Coast am" I saw that the clock said 10pm, and wanted to get up but couldnt, I did however finally get up at 10:35. Then I went to bed and stayed asleep for 9 hours. Best night sleep ive had in years. So now Im about to take 500mg as prescribed, I hope im not sleepy today. RSS – Hide quoted text — Show quoted text -I was too tired. I am going to give it another try though as I had also recently switched from cipramil to efexor and had lost my appetite on the efexor. My doctor says I mustn’t lose any more weight. I don’t know if the tiredness was due to not eating enough so thought over Christmas I might try the depakote again. Good luck if you do try it and let me know how you do:)
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- Hide quoted text — Show quoted text – Hello people, I’ll make this quick… 1. 5 years Dr’s thought i had ADD and Major Depression 2. Dr. Takes me off Dexedrine, keeps me on Celexa and Adds Strattera 3. Strattera induces a Manic State <Never had before 4. Dr. Says Manic state due to Strattera should not have happeded, so he now say im BI-POLAR 5. Dr. puts me on Zyprexa <Gained 26 Pounds in 2 weeks, makes me feel like crap, Dr. puts me on Risperdol. 6. No longer in manic state 7. Dr. Keeps me off Celexa and everything else and now prescribes Depakote 500mg, 1 AM , 2 before bedtime. What should I expect from Depakote? Will I be a zombie, and non functinal like with Reperdol? If I am a Zombie will I start playing games lime Resident Evil on Playstation? <just a stupid joke Thanks Randy
Hiya, Well I recently switched from carbamazepine to depakote (500mgs twice a day) and after 2 weeks I stopped as I couldn’t function properly as I was too tired. I am going to give it another try though as I had also recently switched from cipramil to efexor and had lost my appetite on the efexor. My doctor says I mustn’t lose any more weight. I don’t know if the tiredness was due to not eating enough so thought over Christmas I might try the depakote again. Good luck if you do try it and let me know how you do:)
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7. Dr. Keeps me off Celexa and everything else and now prescribes Depakote 500mg, 1 AM , 2 before bedtime. What should I expect from Depakote? Will I be a zombie, and non functinal like with Reperdol?
I hope not and I doubt it. Resperidol is a anti psychotic and has a very different side effect profile. Depakote is a anti convulsant, it is also used to treat people with seizure disorder… It might make you a little sleepy in the afternoon, but all and all doesn’t really change the essential you. I would think you would have to have a whooping dose in order for it to zombify you. I have switched to Lamictal and it seems to be a little better for me. It seems I am a little clearer, but that could be just total circumstance too. Take care, Vicky
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Hello people, I’ll make this quick… 1. 5 years Dr’s thought i had ADD and Major Depression 2. Dr. Takes me off Dexedrine, keeps me on Celexa and Adds Strattera 3. Strattera induces a Manic State <Never had before 4. Dr. Says Manic state due to Strattera should not have happeded, so he now say im BI-POLAR 5. Dr. puts me on Zyprexa <Gained 26 Pounds in 2 weeks, makes me feel like crap, Dr. puts me on Risperdol. 6. No longer in manic state 7. Dr. Keeps me off Celexa and everything else and now prescribes Depakote 500mg, 1 AM , 2 before bedtime. What should I expect from Depakote? Will I be a zombie, and non functinal like with Reperdol? If I am a Zombie will I start playing games lime Resident Evil on Playstation? <just a stupid joke Thanks Randy
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You should be getting blood tests to tell you when you reach therapeutic blood levels of this drug. Every body handles the dosage differently, and you blood levels can vary even based on other drugs you are taking. It took me a few months to get to therapeutic levels of depakote. Diane
– Hide quoted text — Show quoted text – My doctor put me on Depakote this past Friday and Wednesday raised me from 2 per day to 3. They’re the 250 Depakote ER. Can anyone tell me, how much more will I have to take? How much higher does it get? This is my first time ever taking a mood stabilizer. Rose
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permanently into the ether: My doctor put me on Depakote this past Friday and Wednesday raised me from 2 per day to 3. They’re the 250 Depakote ER. Can anyone tell me, how much more will I have to take? How much higher does it get? This is my first time ever taking a mood stabilizer. Rose
Hi Rose and Welcome to ASDMM. Any medication usually starts out with a lower dose and you work up to a therapeutic dose. Everyone is different. What works for you may not work for me or other people. Medication is a trial and error thing and it can take a while to find the right combo and doses for you. You are on your first medication–most of us go through many medications over the years–so think of it as a journey and a science experiment. What is going to work best for you with the least side effects. Keep a journal so you can keep track of changes. HTH, Nancy Just knockin’ around the zoo. (James Taylor)
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– Hide quoted text — Show quoted text – permanently into the ether: My doctor put me on Depakote this past Friday and Wednesday raised me from 2 per day to 3. They’re the 250 Depakote ER. Can anyone tell me, how much more will I have to take? How much higher does it get? This is my first time ever taking a mood stabilizer. Rose Hi Rose and Welcome to ASDMM. Any medication usually starts out with a lower dose and you work up to a therapeutic dose. Everyone is different. What works for you may not work for me or other people. Medication is a trial and error thing and it can take a while to find the right combo and doses for you. You are on your first medication–most of us go through many medications over the years–so think of it as a journey and a science experiment. What is going to work best for you with the least side effects. Keep a journal so you can keep track of changes. HTH, Nancy Just knockin’ around the zoo. (James Taylor)
Very good advice Nancy, Ive gone through med changes since my 6 year struggle. Finally Im on good meds and happy 
Journals are very good I started with my new doc to keep one.
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My doctor put me on Depakote this past Friday and Wednesday raised me from 2 per day to 3. They’re the 250 Depakote ER. Can anyone tell me, how much more will I have to take? How much higher does it get? This is my first time ever taking a mood stabilizer. Rose
Response:
My doctor put me on Depakote this past Friday and Wednesday raised me from 2 per day to 3. They’re the 250 Depakote ER. Can anyone tell me, how much more will I have to take? How much higher does it get? This is my first time ever taking a mood stabilizer. Rose
Well after a while you will have blood tests to make sure the depakote is not toxic to your system, basicly in my use of depakote the ranges of drug varies, best of luck on your new med…….
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Question:
Don’t know whether or not abstaining from your meds will help with the pain, but here’s some hugs to get you through til the pain gets better. BTW, have you tried Imitrex? It works for some people, and not for others. — Vicky – Hide quoted text — Show quoted text – Hello all (posted to a.s.h.m. to let folks there know I am still alive), I just went to my pain doc today and things didn’t go quite as planned and now I am bit nervous. The cause of my concern stems from me bringing up the subject of my problems (he already knew about the problems from my last visit) w/ Oxycontin (quickly developed tolerance). I have actually been able to get to a tolerance plateau (I can now count on the same doseage working each time) by taking a few days off here and there, but I would much rather have something I can use ANY time I need it. I wanted to ask the doc about switching to another med (e.g., MS Contin) for a while, assuming I was not already equally tolerant to it, to reverse my Oxycontin tolerance. In other words, I thought it might be possible to switch back and forth so I would always have something I could use in reasonable doseages. Anyway, he was in a hurry (an earlier surgery had gone over – not really his fault), and I just got started into asking about this, when he got the idea that perhaps I should take a break from narcotics entirely. I can’t argue that it may be of help to me, I have certainly seen plenty of anecdotal evidence of symptoms improving by reducing/eliminating meds. I didn’t really want to object to this too much, to avoid med-seeking behavior, so I went along with it. What scares me is being without my "safety net." In a nutshell, I have gotten used to having my Oxycontin on hand to rescue me from the worst pain days. Even when I don’t use it (or even when I don’t even need it), it helps me to get by, just knowing that I have something that works available and within my reach, for the worst of times. This security has done wonders to lower my overall anxiety level. I know that this is something I need to do (even if only to tell other docs that I have tried it), but I am anxious about upcoming flare-ups in my pain. I have no concern about withdrawal, even taking over 110 mg oxycodone/day when I take it, since I have stretches of low-pain days where I take none and have no problems. My concern is having a day when the pain maxes out and my family needs me (e.g., my wife gets ill) in a way that accentuates the pain (i.e., lots of arm/shoulder use) and not having the "antidote" for pain. Any comments, especially from veterans of similar trials, are appreciated. — John Martinez "I have a plastic laminated ID card, therefore I am." Remove the nojunk to get my address or URL. Visit our humble home page at http://www.primenet.com/~nojunkmmart/index.html
Response:
John – I can certainly hear your fear and frustration coming through in your words – my thoughts exactly at times. I’m just over 2 months post-op with an anterior cervical diskectomy and fusion at 2 levels – don’t think I haven’t thought – what if the pain comes back someday soon – or even scarier – since it’s been getting a little warmer up here in NJ, I’ve been taking the collar off for short periods of time to allow my neck to "breathe" and it worries me that the left side of my neck (where most of the damage was, and most of the "debridement" took place) hurts quite a bit. I keep telling myself that it’s just being in the collar so long, it’ll go away – but a small part of me doesn’t believe it. Well – I had to come to the decision that if anything like that happens, I’m just gonna have to cross that bridge when I come to it – scream long and loudly at my Ortho and Neuro’s offices, aggresively seek out Pain Management places (which I started doing before the surgery), or even go to the E.R. for an acute episode if I have to. I know that may not be of much comfort to you right now, I’m sorry if it’s not, but I just decided it was easier for me to accept that way of thinking than constantly spending my time worrying about "what if" – know what I mean? I understand where you’re coming from, don’t get me wrong – the other suggestion I had for you is to maybe catch the Doc on a day when he’s not so rushed coming in from a late surgery and explaining all your feelings to him, if you think he’d listen – you could call his office ahead of time and say you need some unrushed "quiet time" with him – they usually understand that – and if they don’t, maybe it’s time to go elsewhere? Not a statement – just a question – depends on how you feel – I don’t like my Ortho. very much and at times have difficulty dealing with him and have had to get "aggresive" with him a few times, but I know he’s tops in his field, and I get along great with my Neuro, so I traded in "touchy-feely" (said FIRMLY tongue-in-cheek <BG) moments with my Ortho. for knowing I have the best, know what I mean? I certainly wish you luck in whatever you decide, I know how traumatic and worrisome this must be for you right now! :( – Heidi and Tony –
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Yes, have you tried Imitrex? or Zomig? or DHE? or anything else that aborts the attack without narcotics? (Sorry, if you have and they don’t work.) My almost-dailies were first diagnosed by my doc as rebounds, but they did not respond to the elimination of offending drugs – in my case, cafergot and caffeine in other forms. Even so, my doc doesn’t give narcotics to migraine patients unless he must, e.g., you’re pregnant. You probably don’t fall in that category….;) Since Imitrex, I’m among the living again. Doc once cut back on that, wondering if it was rebounding. (It wasn’t, and now he says it apparently doesn’t.) Benedryl, if you’re allowed to have it, is an OTC that will at least help you sleep or doze through the pain. Good luck — Julianne
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One thing that I would recomend, now that you have decided to attempt to go without for a while, is to keep a simple diary of the levels of pain that you experience durring the day. An example would be to take a pain reading at least three times a day at specific times. Either by the clock or by events. You know when I got up my pain was at 7, at lunch it was 8, at bed time it was 9. You can also add in flare ups you may have to do a lot of writing, I did. Try to list what you were doing, what worked to reduce the pain, what you attempted to make the pain less, that kind of thing. This really helped me understand what was happening to me. The other big advantage is that when you take tis to the doctor, he gets a much better idea of how you are doing, and how serious your condition is. Give him a copy. A freind of mine who was having trouble managing his pain with medications, was told by several doctors that his pain could not be that bad from this type of injury. He swore it was. He kept this record, and suddenly his Doc had a change of heart, and in fact was looking to do surgery to correct a problem that was not considered. My friend had Carpel Tunnel and Alder Nerve problems. Now he is on the right amount of meds but feels he could use more. He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps!
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John, I haven’t had any pain meds on hand for a couple years now. Not by choice. Unfortunately I am one of those people who doesn’t get relief from Imitrex, or most other abortive agents. DHE shots sometimes help me, and that’s all I have. Besides the ever present wonder drug, phenergen (for nausea). The safety net I do have is when it gets really bad I go in and say I have to have treatment. Demerol/phenergen/toradol shots. It’s a real pain that I have to wait until I can’t function to get help, but at least help is out there. Doesn’t help a lot with day to day life but it keeps me sane to know that when push comes to shove I will get some relief. Good luck to you. Stephanie in OR – Hide quoted text — Show quoted text -BR I just went to my pain doc today and things didn’t go quite as planned and<BR now I am bit nervous. The cause of my concern stems from me bringing up the<BR subject of my problems (he already knew about the problems from my last<BR visit) w/ Oxycontin (quickly developed tolerance). I have actually been<BR able to get to a tolerance plateau (I can now count on the same doseage<BR working each time) by taking a few days off here and there, but I would<BR much rather have something I can use ANY time I need it.<BR <BR I wanted to ask the doc about switching to another med (e.g., MS Contin)<BR for a while, assuming I was not already equally tolerant to it, to reverse<BR my Oxycontin tolerance. In other words, I thought it might be possible to<BR switch back and forth so I would always have something I could use in<BR reasonable doseages.<BR <BR Anyway, he was in a hurry (an earlier surgery had gone over – not really<BR his fault), and I just got started into asking about this, when he got the<BR idea that perhaps I should take a break from narcotics entirely. I can’t<BR argue that it may be of help to me, I have certainly seen plenty of<BR anecdotal evidence of symptoms improving by reducing/eliminating meds. I<BR didn’t really want to object to this too much, to avoid med-seeking<BR behavior, so I went along with it. What scares me is being without my<BR "safety net." <BR <BR In a nutshell, I have gotten used to having my Oxycontin on hand to rescue<BR me from the worst pain days. Even when I don’t use it (or even when I don’t<BR even need it), it helps me to get by, just knowing that I have something<BR that works available and within my reach, for the worst of times. This<BR security has done wonders to lower my overall anxiety level.<BR <BR I know that this is something I need to do (even if only to tell other docs<BR that I have tried it), but I am anxious about upcoming flare-ups in my<BR pain. I have no concern about withdrawal, even taking over 110 mg<BR oxycodone/day when I take it, since I have stretches of low-pain days where<BR I take none and have no problems. My concern is having a day when the pain<BR maxes out and my family needs me (e.g., my wife gets ill) in a way that<BR accentuates the pain (i.e., lots of arm/shoulder use) and not having the<BR "antidote" for pain.<BR <BR Any comments, especially from veterans of similar trials, are appreciated.<BR <BR — <BR John Martinez<BR <BR "I have a plastic laminated ID card, therefore I am."<BR <BR Remove the nojunk to get my address or URL.<BR <BR Visit our humble home page at http://www.primenet.com/~nojunkmmart/index.html<BR
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I tried Imitrex, Zomig, and DHE, and they just made things worse. Fioricet works for me, but I have to watch the the other edge of that sword – rebound. Actually, the oxycontin is for my myofascial pain; though I still get daily migraines, narcotics don’t make a difference unless it’s enough to totally zone me out (I can relieve my myofascial pain at a lower doseage – one that lets me keep my job 
). Sorry if I confused anyone on a.s.h.m. I was just crossposting there to keep in touch with my fellow migraneurs. John Yes, have you tried Imitrex? or Zomig? or DHE? or anything else that aborts the attack without narcotics? (Sorry, if you have and they don’t work.) My almost-dailies were first diagnosed by my doc as rebounds, but they did not respond to the elimination of offending drugs – in my case, cafergot and caffeine in other forms. Even so, my doc doesn’t give narcotics to migraine patients unless he must, e.g., you’re pregnant. You probably don’t fall in that category….;) Since Imitrex, I’m among the living again. Doc once cut back on that, wondering if it was rebounding. (It wasn’t, and now he says it apparently doesn’t.) Benedryl, if you’re allowed to have it, is an OTC that will at least help you sleep or doze through the pain. Good luck — Julianne
– John Martinez "I have a plastic laminated ID card, therefore I am." Remove the nojunk to get my address or URL. Visit our humble home page at http://www.primenet.com/~nojunkmmart/index.html
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… I haven’t had any pain meds on hand for a couple years now. Not by choice. … How many others are "out there" in pain with no pain med’s?! too many jqt….
Hi Karen, I guess we should be careful – some people say they have no pain med’s, and it could mean either they wish they had them, or that they maybe don’t need them. For me it’s pretty simple, as without them I am sure I would not be alive. If I had mild headaches and not severe headaches, then I would probably not "need" them. I do know that I went many years when I was younger with no med’s, and my life was utterly terrible. Now, while I may complain, at least I get some pain medication. It’s a shame it takes decades of suffering (and failed surgeries) to be listened to seriously. Perhaps we can measure victory when we have enough pain medication to throw away extra pain med’s at the end of the month, like sour milk. - jqt –
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… I haven’t had any pain meds on hand for a couple years now. Not by choice. … How many others are "out there" in pain with no pain med’s?! - jqt –
too many jqt…. Karen
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… I haven’t had any pain meds on hand for a couple years now. Not by choice. …
How many others are "out there" in pain with no pain med’s?! - jqt –
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add coronary heart disease to that list Karen – Hide quoted text — Show quoted text – Watch the Benadryl — or any other antihistamine — if you’ve got asthma, closed-angle glaucoma or protate probs.
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Watch the Benadryl — or any other antihistamine — if you’ve got asthma, closed-angle glaucoma or protate probs.
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But there are lots of people out there in pain, severe pain, that are not able to get any medications simply because their doctors are afraid to give them. Next time a doctor says no you can’t have that ask him why. I know when Dr Hurwitz had his license taken away 2 patients chose suicide because after many times trying to get another doctor to take over the regimen that was laid out AND WORKED they never could find one. People like me with fibromyalgia or RSD are in pain and the doctors can see no reason for it and so are reluctant to prescribe anything. Karen
I think SOME of the "blaming the DEA" (done by doctors) is a handy excuse. If the DEA went away, I predict that MANY doctors will *still* be against prescribing opiates/opioids – for our own safety! At least that’s what they will say. Do you disagree? Things can seem one way and, under scrutiny, be another. Look at the intractable pain laws, which are *supposed* to *help* us, but are sometimes used TO MAKE IT MORE DIFFICULT TO GET MEDICATION! My assessment is that society and its perception of us is probably a much larger impediment to getting pain relief than the government. Of course the government has got their hand in it in a big way, but only because society put them there! Look at our friends and relatives, and their reaction to us! "You’re using narcotics? You’re an addict!" This does not come from any federal agency. It stems from a lack of education and understanding about WHAT IT’S LIKE TO BE US! If we had society on our side, the fed’s would soon follow – trying to get the government to change, without addressing the governed, may be futile. Don’t get me wrong: I’m all for the march. But there’s this larger march. If a few of you disagree, then I’ll re-think my views entirely and get back with the band! Maybe I had too much coffee today. Or not enough! Just remember that I’m one of you and that I’m on your side regardless. - jqt –
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- Hide quoted text — Show quoted text – How many others are "out there" in pain with no pain med’s?! too many jqt…. Hi Karen, I guess we should be careful – some people say they have no pain med’s, and it could mean either they wish they had them, or that they maybe don’t need them. For me it’s pretty simple, as without them I am sure I would not be alive. If I had mild headaches and not severe headaches, then I would probably not "need" them. I do know that I went many years when I was younger with no med’s, and my life was utterly terrible. Now, while I may complain, at least I get some pain medication. It’s a shame it takes decades of suffering (and failed surgeries) to be listened to seriously. Perhaps we can measure victory when we have enough pain medication to throw away extra pain med’s at the end of the month, like sour milk. - jqt –
But there are lots of people out there in pain, severe pain, that are not able to get any medications simply because their doctors are afraid to give them. Next time a doctor says no you can’t have that ask him why. I know when Dr Hurwitz had his license taken away 2 patients chose suicide because after many times trying to get another doctor to take over the regimen that was laid out AND WORKED they never could find one. People like me with fibromyalgia or RSD are in pain and the doctors can see no reason for it and so are reluctant to prescribe anything. Karen
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John, Very similar to the story of my life, I’ve been suffering from severe headaches for 31 years and I spent the first 20 with no meds, people may say that I have a vicious imagination but I only started to be treated as a human being and given meds when I started paying taxes, raising my voice when talking with the docs and demanding my meds. *g* coincidence? I dunno….
When I was fourteen, and up until I was about thirty, all my doctors and nurses and caregivers would say, "Oh my! You’re much too young to have so much pain!" Now that I am forty, they’ve finally stopped saying it. Mario (and others with long-time pain): we don’t really know life without pain I guess. This is why I have so much difficulty believing some of the recent "theories" about us, such as the rebound theory (1980s) which purports to blame our medication for our pain. One of our biggest challenges is, What do we do when we get tired of "raising our voices" (as Mario posted)? Talking is a potent trigger of my headaches, so I live in this terrible bubble of self-imposed silence. I try to "speak up" with my written words, but they only go so far. I am glad to have this newsgroup as a place to express my thoughts; yes, even the ones you don’t agree with instantly! Well, I said I was going home. Good hearing from you Mario. Your web pages are a fine addition to some of the pages created by other people here. - jqt –
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I kind of think an additional reason might be fear of lawsuits. My doctors keep saying they want to avoid addiction and rebounds. Add that to government controls and lack of ability to understand our very real pain and you get nothing! I am coming off my 3rd demerol shot since Saturday. I don’t understand why it is preferable to wait until I get so bad I can’t walk rather than giving me pain meds for home use and stopping it in its tracks. Maybe it’s a control issue. I don’t know but my limit is getting really close. I’m just so tired. Hopefully my referral to the pain clinic will come through soon before I break. The doc indicated he would be willing to work with me. I’m not holding my breath though. Stephanie in OR – Hide quoted text — Show quoted text – But there are lots of people out there in pain, severe pain, that are not able to get any medications simply because their doctors are afraid to give them. Next time a doctor says no you can’t have that ask him why. I know when Dr Hurwitz had his license taken away 2 patients chose suicide because after many times trying to get another doctor to take over the regimen that was laid out AND WORKED they never could find one. People like me with fibromyalgia or RSD are in pain and the doctors can see no reason for it and so are reluctant to prescribe anything. Karen I think SOME of the "blaming the DEA" (done by doctors) is a handy excuse. If the DEA went away, I predict that MANY doctors will *still* be against prescribing opiates/opioids – for our own safety! At least that’s what they will say. Do you disagree? Things can seem one way and, under scrutiny, be another. Look at the intractable pain laws, which are *supposed* to *help* us, but are sometimes used TO MAKE IT MORE DIFFICULT TO GET MEDICATION! My assessment is that society and its perception of us is probably a much larger impediment to getting pain relief than the government. Of course the government has got their hand in it in a big way, but only because society put them there! Look at our friends and relatives, and their reaction to us! "You’re using narcotics? You’re an addict!" This does not come from any federal agency. It stems from a lack of education and understanding about WHAT IT’S LIKE TO BE US! If we had society on our side, the fed’s would soon follow – trying to get the government to change, without addressing the governed, may be futile. Don’t get me wrong: I’m all for the march. But there’s this larger march. If a few of you disagree, then I’ll re-think my views entirely and get back with the band! Maybe I had too much coffee today. Or not enough! Just remember that I’m one of you and that I’m on your side regardless. – jqt –
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In article < I do know that I went many years when I was younger with no med’s, and my life was utterly terrible. Now, while I may complain, at least I get some pain medication.
John, Very similar to the story of my life, I’ve been suffering from severe headaches for 31 years and I spent the first 20 with no meds, people may say that I have a vicious imagination but I only started to be treated as a human being and given meds when I started paying taxes, raising my voice when talking with the docs and demanding my meds. *g* coincidence? I dunno…. peace Mario
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snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps! WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing.
I didn’t see the original post in its entirety, due to it having been cross-posted, but… It is probably about counting the pain pills to last the month. I’ve been doing it for years, often on the verge of suicide. Basically, there are state and federal pharmacological board laws, and insurance laws. You juggle them both, and pray that you come out alive on the other side. You don’t want to know more…do you? - jqt –
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My pain-management doc (he was not treating my HA pain, BTW) also told me that he would not increase my narcotic doseages (to compensate for tolerance) beyond a certain point because he did not want to come under scrutiny for "over-prescribing." It was clear that he believed I could use the higher doseage, but he was not willing to risk his license for my unusally high tolerance. John – Hide quoted text — Show quoted text – I kind of think an additional reason might be fear of lawsuits. My doctors keep saying they want to avoid addiction and rebounds. Add that to government controls and lack of ability to understand our very real pain and you get nothing! My doctor came right out and told me that were it not for the restrictions that Kaiser puts on her (their protocols for certain diseases) and the medical board and dea breathing down the doctors necks she would be treatin all my problems differently…and I might also be working Karen
– John Martinez "I have a plastic laminated ID card, therefore I am." Remove the nojunk to get my address or URL. Visit our humble home page at http://www.primenet.com/~nojunkmmart/index.html
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Diane are you in the projection room again… :) Ronnie Queen Of Hugs
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I kind of think an additional reason might be fear of lawsuits. My doctors keep saying they want to avoid addiction and rebounds. Add that to government controls and lack of ability to understand our very real pain and you get nothing!
My doctor came right out and told me that were it not for the restrictions that Kaiser puts on her (their protocols for certain diseases) and the medical board and dea breathing down the doctors necks she would be treatin all my problems differently…and I might also be working Karen
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snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps!
WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing. — http://www.fishnet.net/~mrsunshine/healthzone.html D/FW Assault Crew, West Coast Chapter ICQ # 11867927
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Carey’s email address ends in .ca, so she must be referring to Canadian law. diane I see this is cross-posted and since I don’t know who is where, I also cross-posted my response. My email address has been altered to prevent spam. I am on ashm. – Hide quoted text — Show quoted text – I questioned that also when I read it. I have never heard of "maximum allowed by law" concerning prescription meds nor has my (retired) anesthesiologist husband. Carey, would you please explain to the rest of us what you meant? Ann snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps! WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing. — http://www.fishnet.net/~mrsunshine/healthzone.html D/FW Assault Crew, West Coast Chapter ICQ # 11867927
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I questioned that also when I read it. I have never heard of "maximum allowed by law" concerning prescription meds nor has my (retired) anesthesiologist husband. Carey, would you please explain to the rest of us what you meant? Ann – Hide quoted text — Show quoted text – snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps! WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing. — http://www.fishnet.net/~mrsunshine/healthzone.html D/FW Assault Crew, West Coast Chapter ICQ # 11867927
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- Hide quoted text — Show quoted text – snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps! WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing. — http://www.fishnet.net/~mrsunshine/healthzone.html D/FW Assault Crew, West Coast Chapter ICQ # 11867927 as rediculous as it is I came face to face with it today. My legs are very bad right now with the fibro so I asked the doctor if I could up my flexeril or switch or somthing and she said no that I am taking the maximum dose they allow it happens Karen
Karen,Sorry the fibro is acting up to the point of needing addition doses. According to the PDR, the usual doseage of Flexeril is 10 mg 3x’s a day, with a range of 20-40 mg. a day in divided doses. Dosage should not exceed 60 mg per day. Use of Flexeril for periods longer than two to three weeks is not recommended. I was using Flexeril (Cyclobenzaprine HCI) for close to a year as a migraine preventative without serious side-effects or success, but this is just *my* personal HA medication experience. Mary. – Hide quoted text — Show quoted text –
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– Hide quoted text — Show quoted text – snip He is on the maximum amount allowed by law. It was the diary that helped the doc take him more seriously. I hope this helps! WHATTHEFUCK is this about?????? It seems ridiculous that there is such a thing. — http://www.fishnet.net/~mrsunshine/healthzone.html D/FW Assault Crew, West Coast Chapter ICQ # 11867927
as rediculous as it is I came face to face with it today. My legs are very bad right now with the fibro so I asked the doctor if I could up my flexeril or switch or somthing and she said no that I am taking the maximum dose they allow it happens Karen
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