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IV Infusion question for Migraine
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NANA1377 posted:
Two Neurologists, have examined me and found that I am stuck in Migraine for over a year, with the option to have a series of Intravenous Infusions for several days (4-5) for 4 hours at a time to stop this.

Though I do not have terrible headaches constantly, I do have light, sound, motion, smell sensitivity daily. Also when looking up, down, turning to the right or left , moving around, walking, doing stairs etc. with all that is mentioned it is causing nausea, dizziness, vertigo, seeing feeling things move when they are not, thus causes stumbling, falling over to the left mostly but some to the fight. If headache does get very severe, regurgitation occurs. [br>[br>
With this in mind, I have several questions and or concerns:

First, I know Cleveland Clinic (CC) has a great team that does Infusions so says, Dr. John Oas, Neurologist from OSU says. I live in Columbus, Ohio Area, so it is not close to go back and forth daily while on Infusion.
In addition, I was told by (CC) that it is not good to travel 2.5 hours daily after the infusion. Then have to have a mealtime in their somewhere too and that I will need to stay in the area.

Going to CC is not best, as we must have expense of Hotel plus getting someone to take me back and forth daily to the hospital so it would be an issue finding some one taking possible 5 days off if we stayed in hotel.

SO, with that in mind, I ask, Does Duke have a great team there used to doing these as well as CC, since I have a good friend in Raleigh near Duke and she said it is doable if I need to go there daily as it is about 30 - 40 min away and she would take me?? That would be so good for me to offer to Dr. Oas as an option to CC.[br>[br>
Are different drugs used each day of the infusion(I assume they are)?
Are there side affects?
If so, what are the side affects
How do they know if someone is to have 3, 4, or 5 days of Infusion treatments to get the migraine issue healed, so to speak?[br>[br>
I have an allergy to topical Iodine and IV contrast dye but am sure they will not use that at all but must ask.[br>[br>
Also IBS (Irritable Bowel)

Are there other considerations that I need to think about before doing this? I have Asthma, and now it is a fully blown case right now caused by bronchitis cough but usually my Asthma slight to moderate and bothersome much at night as I lay down.
Have been told by 3 doctors they think I also have Sleep Apnea-- (blood in way back of my tongue at night that I find in the morning when I brush my teeth many times in the last 2 years. Plus about 10-15 years ago, I woke up and could not breathe; no air would come in; with just a terrible sound in my windpipe.
I felt like a fish out of water; it was terrible. Just as I started to fall to the ground and pass out, I prayed for Jesus to help me and for breath and then a huge breath just poured into my mouth. I will never forget it as long as I live.
Much later told that , that was Apnea, and that it needs to be addressed. Other issues, with ill parents, five children, plus working came first. I just thanked God for answering my prayer and had no more nights gasping for air (or I would have addressed it) but, I put it on the back burner. Two different doctors, one this week and last week said to address it now and an appointment is being set up to for me to see a sleep clinic doctor soon as they can schedule.
Have not slept well with this case of Asthma Monday night and tonight am not good at all, (Whizzing). Sorry for all the questions but want to get all my answers since Duke is one of the best in the USA, but want to be sure that Infusion medication will not affect these breathing situations further.

Thanks so much,
Nana1377
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kaysus responded:
Nana1377 - First of all let me say that I feel your pain. I treat at the Cleveland Clinic. I live in PA and treated at the University of Pittsburgh Medical Center Headache Center for 2 years was not getting anywhere...........and was really getting worse............I went to the Cleveland Clinic last September in the midst of a 6 week migraine cycle.........mine was a headache for that whole time with the issues you described............I didn't have to do the infusions.........we tried oral prednisone...........it broke thankfully.

I went from having migraines 3-4 times a week and some other kind of headache every other day (even while being treated at UPMC) to now I think I may have had like 5 or 6 since last September.................a couple of them were related to the medication that I was on...........the medication was stopped and the headaches went away.................

Your sleep issues HAVE to be addressed BEFORE any headache treatment is commenced or at the same time! I have sleep apnea..............you can have severe morning headaches from that if it is not treated........plus it can cause many other problems like high blood pressure and things of that nature. I treat for that as well at the Cleveland Clinic.......I see Dr. Nancy Foldvary......the director.......they have done wonders for me..........I have been diagnosed with sleep apnea for 12 years and have been treated for that long.......but the Cleveland Clinic has really tweaked my treatment so that I am much more comfortable and am more compliant with treatment!

I had on many occassions the infusions that u r speaking of.......that was while I was in Pittsburgh..........but I was always admitted as an inpatient............

For me........I only needed as many infusions as it took to break my headache cycle. I too am very allergive to IV contrast dye........they r not used as well as the lidocaine........for me the same drug was used every day. But there r many options as to what drugs they can use in case one doesn't work..............

I was on DHE...........there were side effects that weren't too bad........I also had iv prednisone........iv depakote that made me VERY incoherent and can never take again!............and they gave me an IV infusion of straight caffeine.........and that worked wonders!

I would get on Duke's website and research and see if they have a headache center. I am sure that they probably do as they r a major teaching and research hospital.......

Once they break your cycle hopefully they will get you on some good preventative meds........I take Namenda........which is actually a drug that treats Alzheimers disease, but in the research has shown to prevent migraines and it has been a life saver for me! I take Zonegran - a anti-seizure med, Verapamil - a high blood pressure drug, although I don't have high blood pressure many of the BP drugs help prevent migrainses and I also take Magnesium Oxide which you can get over the counter as a preventative.

Please google the terms "medication overuse headaches" and "rebound headaches".......if u take too much tylenol, advil or even prescription pain killers for your headaches........it can turn your original headache worse and make it chronic.

Good luck and let me know about what happens! Let me know if u have any other questions!
 
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carpetcrawler5 replied to kaysus's response:
How far along in your headache did you get the caffeine? That usually only works at the beginning of the migraine and if you were in the ER I'm assuming you were pretty bad off by that time? Was it actually Cafergot that they gave you intraveniuosly?


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