Migraine

Teri,

I have been on migraine meds since 1997. I have tried alot of meds. I have taken the triptans on a regular basis since then. I am going to file for a dissability. If I get it and can stay home for 3-5 months I am thinking of going off all meds except my preventative. My thought is that if I can clean these drugs out of my body I may get some relief just from that alone.

I worry about what the drugs are doing to me. Since this triptans are a newer drug thay really do not know the long term affects.

Besides the fact that my headaches seem to be getting worse with each passing year. They now think I have the fibromyalgia. Could this be due to years of meds? The dr said with fibro the pain sensors just go haywire and they do not know why. What if it is chemicle overload? Recently I have had to take vicodin for that pain. Is the vicodin going to hurt my liver, kidneys, ect. I am on;ly 43 I don't want to be drooling all over myself and in a wheel chair at 50.

Anyway I want your oppinion on this. And no before I did get treated- before 1997 back to 1983 my migraines were less frequent but more severe because I had to ride them out without meds. However I do not even know if I could go without the triptans for that long. I just want to know if you think it could help.

Bev,

This is a tough question. Have you discussed it with your doctor? I'd be curious to know his opinion.

As you know, there are multiple reasons for trying to abort Migraines. Beyond wanting the symptoms to stop, there's the consideration of what having those cerebral blood vessels dilated can do. For this reason, I'd say that maybe your decision should be based in part on how long your Migraines are lasting. Let me give you an example -- I don't think this would be a good idea for someone in my position because my blood pressure rises so much when I'm in pain. I also have to consider that I already have glaucoma and the increased intraocular pressure that occurs during a Migraine could contribute to additional vision loss.

How many days a week are you using triptans?

From what I understand about how triptans work, I don't see how their use could increase Migraine frequency, but then there's so much we just don't know.

I use the Frova 2 days per week and the dhea 45 2 days. I have had 2 dr's tell me not to exceed 2 days per week on either drug. Those two drugs are not compatible so There has to be a 24 hour period between them.

My blood pressure is normally around 80 over 50. When I had 11 months of daily migrain my bp went all over the place because of the pain. That is about the time Dr put me on Inderal. I am now up to 44o mg a day. My pressure is now back down to 85 over 50 which is normal for me. Dr said it is ok that low as long as I am not dizzy or faint.

I will not go off the bp meds because it has cut my migrain by about 15 per month. I still have 12 to 15 per month. I had just wondered since 2 dr's told me that you can get rebound headaches from taking too many triptans if I should stop them and clean house, so to speak. I have been using them on a very regular basis for 10 years so I am sure I have a chemicle build up and mabey a dependancy. Is that possible? I have not mentioned this to my current dr.

About 4 years ago I saw an internist who thought my birth controll, vit, ect might be causing my migrains. So he took me off of everyjthing EXCEPT the triptans. That made absolutly NO diffrence. That is when I found out I had the endometriosis so bad. The Birth controll was covering that up. So I never went back on Bc and wound up having 2 major surgeries to remove endo, ect.

My current nuero that put me on Inderal said that if I saw no Improvement that he wants to take me off of my bioidentical hormones. When I try to tell the Dr's that mine are not hormone related thay seem to be deaf. I take every day an estrogen/testosterone mix in cream form. Then 14 days per month I take a progesterone troche orally. If I forget to take my progesterone on time, say I am a day late I get a really bad headache. Same with the cream if I forget it . So in my case the lack of hormones cause the headache. When I had peroids in my 20's I had hormone tests that showed estrogen dominance and I took progest to balance. That helped headaches. I do have my hormones tessted annually to make sure I have the correct levels. So the hormone thing is so contraversial that I just had to figure out for myself what works for my body. Also all the research I have done suggests that If you are too low on estrogen tht will cause headaches. Tested on myself I found this to be very true. Besides when I did not take the hormones I had the same headaches. So....

I am reading in the forums about vit D deficiencies. I did test low on that in my spectracell test. I am due for my annual pap, hormone test I am going to tell her to test me for d again. If I can remember the name of that test they were talking about. I have been reading that d depletion can cause pain.

Another thing I wanted to mention to you is if I get my dissability I would like to try and raise $$$ for research on migrain. When that time comes can you help me with that? I have never done any fund raising. I feel I need to do something. If I win the lotto I will certainly give. I am appalled at how many lives are ruined by this disease. Personally if it were not for my wonderful hubby and his amazing generosity I would be living in a cardboard box. We are not rich but were certainly not doing without. I want to do something to help others who have to choose between their meds and eating. Ithink contributing to research is the best way of helping them, and I know i cannot raise alot of money as I am limited to working. But I should be able to raise something and every little bit helps.

Any hoo I just thought you may have read something on people with migrain going drug free to see if the triptans can cause some headaches. I am probably grasping at straws because my headaches were bad before triptans ever hit the market. How i SURVIVED BACK THEN WITH ABSOLUTLY NOTHIG IS BEYOND ME. i EVEN WORKED IN A MILL and went to work every day. I would go in the bathroom, throw up, and go back to work.
Ok, I will stop rambling. Thanks for your help FREDDY

quote:

Originally posted by Teri Robert:
Bev,

This is a tough question. Have you discussed it with your doctor? I'd be curious to know his opinion.

As you know, there are multiple reasons for trying to abort Migraines. Beyond wanting the symptoms to stop, there's the consideration of what having those cerebral blood vessels dilated can do. For this reason, I'd say that maybe your decision should be based in part on how long your Migraines are lasting. Let me give you an example -- I don't think this would be a good idea for someone in my position because my blood pressure rises so much when I'm in pain. I also have to consider that I already have glaucoma and the increased intraocular pressure that occurs during a Migraine could contribute to additional vision loss.

How many days a week are you using triptans?

From what I understand about how triptans work, I don't see how their use could increase Migraine frequency, but then there's so much we just don't know.

Holy cow, Bev! I think you may have just answered at least one reason you're having trouble. Does your doctor know that you use Frova and DHE BOTH two days a week? Because of the way triptans and ergotamines work and the way they bind to serotonin receptors, taking each of them two days a week is the same as using either of them FOUR days a week. Triptans and ergotamines are considered the same type of drug for purposes of avoiding MOH/rebound.

I'm going to be very truthful here, Bev. If your doctor knows you've been taking Frova and DHE like this, you need a new doctor who knows what he's doing. I know just how hard it is to change doctors, and I fully understand the temptation to stay with your current doctor and try to come up ways to make things better yourself. I tried that too, but we're not Migraine specialists. Believe me, I think what you're doing is great, but you really do need the guidance of a doctor who knows what he's doing.

When you're ready to work on raising research funds, I think we can find some ways for you to help.

hugs,

Well, heres that story...... I wrote to you the 2 days frova then 2 days dhe because I was taking it that way. The dr that put me on that is the one we fired. I say we because I loved your input on firing her. Remember the 'good doctor' that had me so messed up on the cymbalta? She is the one who told me 4 days a week. She said that triptans and dhe worked totally diffrent. Now I did take it that way for almost a year, the 4 days a week. However now- The Dhe shots make me so sick that I only take them when I think I will Have to go to the E-R. Which if I take Frova 2 days and i still have a headache on the 3rd day After 24 hours from the frova i then take 1 shot. Period. Now when The good dr was treating,for several months,I was having daily pain and not getting any relief. So i fired her. Now I may use 3 dhe shots per month. AND I am not having daily pain. So you probably hit that on the head.

Now, is it safe for me to just use those shots as an alternative to the ER? The demerol and toradol shots they give there work as well as the dhe but do not make me sick. Even though I take a rx anti nausia the dhe still makes feel so tired and like I have been poisoned. I attribute that to being so toxic from the years of meds. However not sure. T
he demerol shots are only about $10.00 or so for 20 shots. However getting the Dr. to write a rx is another issue. Currently I am not seeing a dr for headache. I see a general practioner who writes all of my RX"S . Since I am at 12-15 or so pain days a month I sort of feel like that is the best I have ever been. Outside of a 1 year period when I had none. I am working on exercise, drinking more water. getting a regular schedule and watching and writing down everything that goes in my mouth. In the hopes that I can move fredrick out for good. I am also using herbs, acupun cture and massage. The dr I am seeing that does my herbs also went to 8 years of our med school. He works with onocologist for cancer patients. So he knows every rx i take and doses ect... Because a screw up there can be deadly.
Gee the good dr that I fired sure seemed to want to do me harm instead of good. Especially when I told her some of the meds were not helping and she refused to take me off them. That is why I am hesitant about her and this dissability claim. I am going to tyr and get my records from her first.
Anyway I hope I am not totally confusing you. Alot of times I do not explain things to people very well. The old brain does not always click in for me. Hope this gives you the accurate info. I am glad however tht you told me about those 2 drugs because I sure did not know it was harmful. Thanks

PPS In the page I wrote initially I did say "My current Nuero" I saw him 1 time. He put me on Inderal and sent my to family dr to write the RX. I guess he figured she knew all the meds I take and felt that was a safer way to do it. He said if my headaches did not get better he wanted to take me off of the hormones. So my headaches stopped being daily and I DO NOT WANT TO get off my hormones because if I am even a day late on taking them I get a monster. Then when I do take my dose of progesterone the headach is gone in about an hour without taking rx's. I know I should not be tolerating these 12-15 a month. However I do not have the energy to argue with a man dr who feels he knows more about my body than I do. So he takes me off hormones for 3 months and I am the one who suffers not him. And I already know it wont help.
I also read an article that keeping your estrogen levels at optimum actually HELPS the migrain. So I tinkered with that too. my results seemed to prove that theory at least for my body.