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milo	Dec-02-09, 01:34 PM (CMT)
"Back from the HA specialist. Butterbur anyone?"
It's week three after my botox, and my head is back to a place where I can function, though I've only had three non-medication days and they were not consecutive. I'm glad to have some relief!!!! I saw the HA specialist yesterday. My head was swimming going into it as I had about ten pages of questions to fill out before I went in. She is very nice, and from what I can tell, the best I will ever find in this area, possibly all of Canada. Sadly, she is only here until Feb, then will be out of country. There was so much info, so I'm not 100% sure what I'm doing. I just called to get a cc of her dictation. She wrote a bunch of notes for me on post-it notes...thankfully. Thank goodness for Docs who know to do this! (She is also a migrainer...go figure). She said there are six major factors that research says make migraines worse: 1) sleep apnea 2)obesity 3)frequency of attacks....the more you have the worse they get (sorry) 4)medication overuse including simple OTC meds more then 3 times a week; opioids, more then eight times a month; and even triptans (dunno how many sorry) 5)caffeine 6)psychosocial stressors She highly recommended a product called migravent which is a combo of riboflavin (B2), magnesium, coenzyme Q10 and Butterbur. It's very pricey. I'm trying to locate some Butterbur to start that up. She says this combo has been very effective with several months of use. There is some pretty good stats on their website. We are going to bump up my botox to every eight to ten weeks. How I will pay for that I don't know. She drew me a graph on it's time line of effectiveness and my head follows it to a "T". We also discussed an occipital nerve block, and will discuss that again when I go back in six weeks. We will then discuss lamictal or valproic acid as well, as we are going to see what happens while I cut out all meds and caffeine. I'm already about 30lbs overweight, so valproic would only add to that factor. Oh...and we discussed biofeedback. I'm kind of feeling like an American today...having to pay for my own healthcare solutions...lol....as almost every recommendation is not covered by my really, really good Canadian health care plan. I honestly don't know how I'll afford this all....but if it works it will be worth it.
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re:back from the HA, Gringa, Dec-02-09, (1) RE: re:back from the HA, milo, Dec-03-09, (2) RE: re:back from the HA, pen, Dec-04-09, (3) RE: re:back from the HA, milo, Dec-04-09, (4) RE: re:back from the HA, tortoisegirl, Dec-04-09, (5) RE: re:back from the HA, milo, Dec-07-09, (6) RE: re:back from the HA, milo, Dec-07-09, (7) RE: re:back from the HA, tortoisegirl, Dec-07-09, (8) RE: re:back from the HA, Norma, Dec-10-09, (9)

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Messages in this topic

Gringa	Dec-02-09, 10:40 PM (CMT)
1. "re:back from the HA"
Sounds like this doctor had some good info, thanks for sharing it with us. I'm going to try to cut down on my codeine use, I use it for back pain, but it is probably causing migraines.
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	milo	Dec-03-09, 08:07 PM (CMT)
	2. "RE: re:back from the HA"
	Normally, I take much of what people/docs say with a grain of salt, but this doc is legit. I'm having difficulty locating all the vitamins at a decent price, so I may end up having to buy the combo one I mentioned above. I may just order butterbur. I found some today as well as the B2 and magnesium. The coenzyme Q10 is really pricey and I have yet to find an active one, rather then a precurser. The dose is 150mg, so it would be about 50.00 a month to buy the Q10 alone. I have enough of the others to last me until I can order online. I just hate ordering meds cross border as you never know what customs lets pass. She said it takes a few months to work, so I'll keep everyone posted. I'm a bit foggy today from pain, so I'll update more info later. Hang in there all.....milo
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	pen	Dec-04-09, 07:00 AM (CMT)
	3. "RE: re:back from the HA"
	I got butterbur here in the UK for a very good price, it is an american brand....
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	milo	Dec-04-09, 12:44 PM (CMT)
	4. "RE: re:back from the HA"
	I managed to find everything and have set up my vitamin kit. I am waiting for the Coenzyme Q10 to show up in the mail, but have started everything else. I have huge allergies, so I had to find ones without my allergens in them. I also added 5 HTP. I’m taking 100mg three times a day with meals. I have cut out caffeine, though today is day one with none, yesterday I just cut down. I’m drinking some lovely instant decaf at the moment. Yum. It curdled my soy milk…lol I've been doing a lot of reading on the combination of these vitamins and herbal extracts, and studies show just as much response to them as to prophylactic medication, with one upside....much less side effects. The butterbur shows significant response on it’s own. I’m taking 150mg in split doses. Magnesium has long been known as a factor in migrainers, as much as 50% of us have been proven to have low levels in our system at time of migraine. Many people have a response to increasing this level. Suggestions are between 400 and 600mg a day. (Please discuss with your care provider) The B2 I need to read more about, but am taking 400mg a day in split doses as this is the amount in the migravent. Again, please discuss with your care provider before taking such a high dose, as RDA is normally less then 2 mg. Anyone tried the combo or the migravent?
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	tortoisegirl	Dec-04-09, 08:19 PM (CMT)
	5. "RE: re:back from the HA"
	I tried Migravent as well as a few of the ingredients individually (and many others as well) and I didn't find any help, but migraines aren't my primary issue either. You may try to find it online if you find it expensive near you. It's about $40 USD for a 20 day supply. If you buy all the ingredients separately it would be a higher cost here. I have a comment on the Botox: My neuro who tried to get my insurance to approve Botox (they didn't) said he wouldn't inject Botox more than every three months because if you did it more often such as every two months it has been found to become even less effective as actually your body will have a tolerance to it and block the effects because it is a poison. Although this is the only source I have for this tidbit, I suggest you try to look this up and/or ask your doctor to ensure that in fact you won't put yourself in a worse situation. What preventatives have you tried? There are some like Topamax that have been shown to be very effective, although a high propensity to side effects, but it can cause weight loss instead of weight gain like many of the medications. I personally would exhaust all the cheaper preventative medication options before moving into the expensive options like injections. Not sure what your history is, but many generic (cheap) preventatives can be very helpful for people in reducing migraine frequency and/or intensity. Also, if you have only had Botox once, I wait to pass judgment on the effectiveness until you have 1 or 2 more treatments, as for many people it will become more effective after treatment 2 or 3 than the first one. I would be careful not to try more than 1 or 2 new treatments at a time so you know exactly what is working and what isn't. Keep an accurate log of your migraines as well as the treatments you have tried. Have you identified potential migraine triggers for you? It doesn't matter what the most common ones are, only what triggers them for you as everyone is different. If you think you could be having rebound headaches, stop all analgesics and caffeine for at least a few weeks if not a month. This includes Triptans, over the counters, prescription, sinus or allergy medication with Tylenol, decongestants, etc. Until you have gone that long without the potentially offending substances such as codeine you cannot be sure you are clear from rebound. Just cutting back to the recommended 2-3 days a week max will not help if you are already in a rebound cycle. This is so so important to do because many people with have daily pain for extended periods of time and not realize it is something so simple as rebound. Even if you are currently taking the medication infrequently, if you ever took it nearly daily you need to take a break from them. If you were a daily caffeine user you may find you get rebound from the caffeine withdrawals, so keep that in mind. Best wishes. Hope you find relief soon.
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	milo	Dec-07-09, 12:46 PM (CMT)
	6. "RE: re:back from the HA"
	Hey, thanks for the great info. My meds, that have all failed, are extensive. Axert, cafergot oral, Frova, Gravergol, imitrex, maxalt, maxeran, migranol, zomig, amitriptyline, flonase, gabapentin, propranolol, nasonex, nortriptyline, topamaz, zoplicone, caffeine, dexamethazone, dilaudid, fiorinal, ibuprofen, naproxen, oxycocet, prednisone, tordal, and the whole family of tylenol. ER vsists have combined, gravol IV, morphine IV, percocet, steroids IV and tordal IV. I've also purchased a tens machine, a Dr Zaxx, went on an absolute allergy diet, obtained weekly massage, stopped drinking and both upped and stopped my caffeine. The botox has been ongoing for almost two years now. It has been effective by approx 75% all but twice. For those that botox is effective for, it tends to follow a timeline where the efficacy starts to decrease at eight weeks post injection. For many, they can stretch the efficacy from that eight to about twelve weeks. For me, I see a marked change at eight weeks. I have never questioned it being rebound, simply because I stop all medications the second my HA are gone with no ill effect. I won't know this time either, as I'm mid-botox, so the fact is that I am also cleaning off all meds concurrantly with the other treatment....so I won't know what is actually working if the HA finally go away. I'm actually more then OK with the risks involved with upping my botox simply because it's the only thing so far that gives me enough relief to go on with life.
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	milo	Dec-07-09, 08:20 PM (CMT)
	7. "RE: re:back from the HA"
	tortoisegirl, do you have a place I can read up on your stats about the rebound HA? I'll admit I need more info on it. I'm on the new site, so if you sign up there please feel free to PM me. Thanks!
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	tortoisegirl	Dec-07-09, 09:31 PM (CMT)
	8. "RE: re:back from the HA"
	I haven't got around to signing up on the new site but I am available through the e-mail linked to my user name (click through the error screen). Here is some further information on rebound that I find reputable, citing that the medication must be stopped for the rebound to stop, not just reduced: http://www.webmd.com/migraines-headaches/guide/rebound-headaches http://www.headachedrugs.com/archives/rebound_migraines.html http://headachedrugs.com/archives4/rebound.html http://www.healthcentral.com/migraine/medications-32544-5.html http://www.healthcentral.com/migraine/news-280002-5.html Best wishes.
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	Norma	Dec-10-09, 08:06 AM (CMT)
	9. "RE: re:back from the HA"
	I have been doing botox every 3 months for 7 years, and the results have actually gotten better over time. I have the same problem with it wearing off too soon, and the last 2 weeks are always hard. My Dr. also suggested trying every 10 week treatments, but since it costs me anywhere from $750 to $1,000 per treatment, depending on how generous CIGNA is feeling, I just cannot add another treatment each year. Still, I have to remember that I was practically disabled before I started these treatments. Better to work and spend it all, than to not be able to work, I guess. No, I know! norma
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