I am new here, and thank you all for your patience. I'm almost at the end of my second year of Lyme treatment. A month or so ago I had a PICC line put in and started on IV Rocephin. At the same time, I was taking Mepron and Zithromax. On the fourth day of IV Rocephin, the migraines begain and have not left. It is now October 22, and I am living in Migrainia. I started using Imitrex, which I did not realize should not be used more than three times a week. Now I am wondering whether my continuing migraines are from rebound from Imitrex or from some Lyme demon. My LLD has taken me off Rocephin, off the Heparin used to flush the line, and now I am flushing the line with only saline. I am hoping to be able to go back on Rocephin since it's the drug of choice.
Have any of you had experiences like this?
If not just like this, have you had migraines that lasted over a month? If so, what did you do, short of banging your head against the wall and falling into a blubbering heap?
I'm trying to remain upbeat, but all I want to do is eat cookies to console myself, thus sending more sugar into my Lyme infested body.
Would love to hear from you.
Sending healing wishes,
Claire aka Troopergirl 7
Posts: 5 | From Washington State | Registered: Feb 2006
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posted
I got my first migraine the day I got LD - 12 years ago. And I still live in a constant migraine hell. Just recently I had major improvement taking natural supplement.
I would be hospitalized in a specility clinics: Michigam Head pain and Neuro Institute and Diamond Clinic, every year sometimes even for 96 days in a row.
I don't know how I survived last 12 years. You get somehow use to the debilitating pain. I put my life on hold and concentrated on surviving one day at a time. The amount of narcotics I had to use would kill an elephant, but didn't even touch me.
When the pain goes the worst I go into a partial coma - my body shuts down, than I wake up in ICU. Request an early pain control. Find pain specialist who is not afraid to prescribed huge amount of pain meds.
Pain can kill!!! Don't worry about addiction. As soon as you start feeling better, you can get off really quickly without withdrawl.
Good luck! It's no fun. Trust me, I know, as I tried all preventative and abortive migraine drugs, but to no avail. What symptoms do your migraine have - nausea, sensitivities, aura etc?
Let me know, if you need additional information. Petra
Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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I would try a longer lasting triptan like Amerge. I got rebounds from Imitrex because I had to take it more often.
You might need to take a break from triptans for a few weeks and then start with a longer lasting one. Have pain meds ready!
I am getting relief from constant migraines with Arteminisin for Babs. Have also had 1 1/2 years Lyme treatment and 6 months Bart. Hope you are moving from Migrainia soon, Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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I also have severe migraines from neruolyme. The only things I could do is lay still in a dark room with my eyes closed.
Here are things that helped - Never have more than a half cup of coffee a day -No ham, bacon, cold cuts - No smelly cheeses -No alcohol at all
Get enough sleep Stay out of stressful situations Meditate-stress makes migraines worse!!
Any one of these will put me in a bad spiral for weeks so I am militant about these things.
Rocephin is going to help once you get past the herx. Maybe he could start a lower dose?
Hang in there and take very good care of yourself. Try to set small goals around something important to you...this will help distract you and give you some hope.
It will pass
-------------------- We are spiritual beings on a human journey...
posted
The Imitrex can definitely cause rebound. You should read the book "Heal your Headaches" by Buccholz (sp?). He discusses this and also a little bit of they Lyme/headache issue. Good luck.
Posts: 144 | From Connecticut | Registered: Sep 2006
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Along with proper antibacterial treatment, cranial sacral therapy (specifically a type of it called core synchronism) helped me a lot with the migraines I had from Lyme. I don't know how to say it technically, but it basically gives the brain more room to breathe. I think the migraines are related to encephalitis from Lyme a lot of the time. The more oxygen and blood circulation can be opened up to the brain, the more the symptom can subside. That is what I noticed for me. And contrary to common wisdom, having a bit of caffeine also helped me. I would take about a half cup of coffee daily, and that seemed to reduce the frequency and intensity a bit as well.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
The best relief I've gotten for my constant headache and migraines was to get an MRI of the cranium.
It was an "open" MRI, and the noise sounded like a melodic hum, rather than the banging and clanking of the closed MRI that I had nine years previously. (Also, I wore earplugs and meditated during the procedure.)
The effect began to wear off after five or six weeks, and in five or six months I was back to the pain level I had before.
There is a company that is working on a "migraine gun" that uses pulsed electromagnetic energy to stop a migraine.
Boy, are they going to make money when the product comes on the market!
The other thing that has dramatically reduced the frequency and severity of my migraines is systemic enzyme therapy, for hypercoagulation.
I've been taking Wobenzym for a year and a half now, with good results.
Carol
p.s. Previous to all this, I learned to meditate, and also used the Centerpointe system. This seemed to help the migraines somewhat, but nothing like the Wobenzym.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Sorry about your migraines. Just a quick note and a few ideas. I think that babs and other coinfections definitely cause migraines.
I think it's impo to watch out for dietary triggers. Avoid nitrites - found in cured meats, deli meats. These dilate blood vessels and can trigger a migraine.
Keep a regular sleep/wake and meal schedule. Do not allow yourself to sleep an hour late on weekends. This can trigger a migraine.
Possibly bright lights and loud noise, such as watching a movie in a movie theatre may be a trigger.
Try to avoid strong emotion, either happy or sad, or angry, etc., this can be a trigger.
Think of it like your brain is inflammed and needs to rest.
In my experience all the tryptans like imitrex caused a wicked rebound phenomenon, creating many more migraines than I ever had before.
Avoid artificial sweeteners esp Aspartame, which is addictive and is an excitatory neurotoxin. There are some good websites if you google under the work aspartame.
In addition to diet drinks and yogurt, for example, it is found in products that you would not expect such as chewable medicine tabs. Read labels or ask the pharmacist.
The best drug for me has been neurontin 600 mg twice a day. It prevents any migraines from ever getting started. But everyone is different. See what works for you. The website for the tryptan Maxalt has some good headache info.
Do you have a good headache doctor? I found a neurologist who specializes in headaches. Some hospitals have a headache clinic. This has been a Godsend.
I hope you find some answers. Keep up the abx., that's impo too.
Elizabeth
Posts: 156 | From MA | Registered: Jul 2003
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