Migraine

Hey everyone haven't posted for a long time. It's been quite a year and it only February. In early January I developed a blood clot in the artery that my port-a-cath was threaded trough. This was actually Jan 8, I woke up with a very swollen face, eyes, and neck. I measured my neck so I could keep track as that swelling started going down, it was 19inches. When I went to the Dr. he thought at first that I might have a blood clot in my lungs, since my lips were purple/blue and face ashen. Chest x-ray clear, so did Chest CT, which showed the blood clot. This was all very scary. Actually what bothered me the most was, when I looked in the mirror I saw not my face but my Mother's. She passed away in June of last year, of renal failure, so her face was very swollen like mine. The older I get the more I look like my Mother. It was a very emotional time for me. Of course the admitted me to start Coumadin and the shots in the belly not sure how to spell. I had to have my Port removed, this was done 1/30, right after removal during surgery the site developed a huge hematoma, which I call my 3rd boob , I try to find humor in bad situation when I can. Helps to get thru it. . Of course because of the Coumadin I have to have frequent PT/INR, and I do not have good veins, thus the need for the port. I have a few tiny ones on the tops of my hands in the knuckle area, so blood draws are always fun March 11 I'm scheduled to have an ultasound of the area, then see the vascular surgeon to see when I can have the new Port put in, please pray that everything looks good so I can have it put in very soon. I use the Port at home to give meds for Migraines. So not having a Port is making it very difficult to manage pain level at times.
I went into the hospital 2/11 for DHE, the vascular Dr okayed PICC placement in the opposite side from the clot. 2 days into my stay I start running a fever of 101, and a very nasty cough(which didn't not help resolve the migraine) first they thought I might have the flu since my oldest son had just been dx 1/31 with type A, they did the nasal swab test it was neg. Later that night temp spiked to 102, Dr ordered blood cultures and chest x-ray, turned out I had pneumonia, in both lungs. Wouldn't you know it. Well anyway what better place to get pneumonia than in the hospital, plus being on antibotic when on Coumadin, keeps the Coumadin from working as well, so they had to draw daily PT/INR's, at least I had a PICC in. I finally got to go home 2/18. I am feeling much better, no cough to speak of a little at night, just take some Nyquil.
I am making progress with my migraine preventive, starting to notice,
that the migraines are a little less severe, and less frequent. The time between hospital trips for DHE is longer too, used to be about every 4 wks, now is about 8wks!!!! I am up to 300mg of Topamax, 150mg in the am, 150mg in pm. Dr. Burger said that is a higher dosage than most migraine patients, but that I am not most migraine patients. He is a great Dr. he has worked very hard with me this past year. Not only with the migraines, but also with trying to help control fibromylagia pain, we have found that Zanaflex 4mg and Klonpin 1mg taken TID helps allot to control the pain.
Hey it was great talking with you guys, but I've got to go finish supper. Have a great evening.

Roni

Thanks for sharing your story. I'm sorry for all that you've been through. I'm glad you are doing a bit better now.

Hi Roni - sounds like you have had quite a year already - let's declare it a new year again for you so you can have a better one!

- Megs

Well, starting off on the wrong foot means that now you can switch to the right foot, right?

Glad you are doing better and that you made it through a tough beginning to your year.

I'm glad things are going better for you now, including the migraines.

I'm glad you are so optimistic! Great news on your migraine success!

Please keep us posted when you can, k?

All my best to you

Thank you for all your, encouragement it means allot. The hematoma at the surgery site is getting much smaller, this is great. So by March 11th, when I go for the ultrasound and see the surgeon. I hope he will say all is well, and that I can have a new Port put in. I just hope I won't have to wait very long for an opening in his surgery schedule.

One good thing is they are making better and better Ports as time goes on. One that was recommended to me by the UMC Hospital I.V. Team is made by Bard, it called a Power Port. Benefits for patient: lightweight for patient comfort, lower insertion and penetration force than other port access needles and easy to dress. Also is easily identifiable, soft palpation points on the septum, and a unique triangular port shape. It can also be used to insert CT dye, most other ports could not be used of this. If anyone is going to need a port and is interested at looking at what is available the web site for Bard is www.bardaccess.com.
Roni

Wanted to give an update. Had the ultrasound done 3/11 and saw the vascular surgeon, the blood clot is gone . I am scheduled for surgery 4/11 to have the new Port-a-cath put in. In the mean time I have been giving myself I.M. injections (since Jan). You give these in your thigh muscle, my thighs are so sore,swollen and full of knots. I am really afraid of getting cellulitis, this has happen before when giving I.M. inj. before I got my first Port.
I called my Vascular Dr to see if he would order for me to come in out pt to have a PICC line placed. That way I can give my meds thru the PICC, until the surgery. Scheduled to do this on Weds. Could have done it sooner, but my INR(lab test that shows how thin or thick your blood is) as to be at least 1.5. I am still on Coumadin and will be for several more months, INR w/ Coumadin therapy the range they want it to be at is 2.0-2.5 or so. So I have to stop the Coumadin for 2 days have PT/INR drawn early Weds morning. And pray the level is where they want it to be. You guys keep your fingers crossed too, toes too, anything that might help Being able to give my meds I.V. will help to get better pain control. Springs a rough time of the year with all the rain storms, big triggers for me.
Roni