cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Other than migraines every 2 weeks or so, I am amazingly well. When I'm well, I'm very, very well.
Have been off abx for months now, and am functioning at around 80 - 90% on most days.
I have some worrisome symptoms that are creeping back, but can't bring myself to go back into major treatment.
LLMD has given me leave to use my judgment, and when I'm ready will re-start babs treatment if the symptoms come back.
But... am getting the same-old, same-old vicious have-been-whacked-in-the-head-with-a-sledgehammer right-sided headaches every 2 weeks.
They last 2 - 4 days, and range from a pain level 6 to a 10 (totally incapacitating, lying on the bed clutching my head).
These "headaches" - which have been called at varying times migraines and/or trigeminal neuralgia... they go down my neck, extend into the upper back... unbearable.
Often all I can do is lie on that side on an ice pack.
Butalbital takes the edge off so I can (somewhat) funtion.
And Icy Hot smeared all over that side of my neck, back and head seems to help as well.
Does anyone else get this?
What is causing the 2 week cycle?
Does this mean it's time to bite the bullet and go back to babs treatment?
Dreading the yellow goo, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
This has been my worst symptom Cactus. Everyday for 2 years I have had a headache. Then at about day 15-20 in my cycle (it varies) I get the sent from hell migraine. It lasts anywhere from 2-4 days....mostly about 3.
Like you, I am rendered useless. Narcotics do nothing. Head meds from the neuro, nothing. The best that I can do is spread the Tiger Balm, get a bag of frozen veggies and alternate it with my hot rice sock.
I was on Mepron for the last 2 months and THIS cycle I did not get the migraines. The daily headache is still there though.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I was watching an alternative health show one day and the host was interviewing a patient and a doctor about using Vitamin B1 or B2 (sorry, I can't remember which...) for migraines. The patient said she had tried many Rx's and this vitamin therapy was the only thing that gave her relief. I also recall that it took a few months for it to "kick in". I can't remember the show's title, but wonder if a medline/pubmed search would bring something up.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thank you. It helps to know we're all in this together.
Feelfit, like you - I've made friends with a few bags of frozen veggies. This is the pits.
Babs treatment has helped me in the past, too. I hope your headache-free run continues.
If not, we'll be migraine buddies.
Dawn, thanks for the Vit B info, and I will google it straight away. Anything to help.
Carol - hypercoagulation? That makes sense.
Where do you order your Wobenzym? I will try it. Thanks!
Still battling the sledgehammer-headache, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
My migraines...every two weeks, resolved with magnesium. If I miss the mag. I'll get slammed.
Linda S.
-------------------- Linda Posts: 39 | From Lexington, Virginia | Registered: May 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, Linda. How much Magnesium do you take - and which kind, if you don't mind sharing?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Shosty
Unregistered
posted
Try bioidentical progesterone. Ou can find info on dosing online here:
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Shosty - thanks. All tools for the toolbox are helpful!!!
I would not have thought of progesterone, but that makes sense as many people report having less migraines post-hysterectomy (full).
I've had a partial hysterectomy, but have continued issues with endometriosis - and have hit a nice balance these days.
Whatever is happening hormonally (or not happening) seems to be helpful for the endo situation.
Would taking progesterone (even bioidentical) shift that balance, I wonder, and end up stimulating more estrogen production?
Something to ponder and research.
Muchas gracias!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Shosty
Unregistered
posted
My daughter also has/had endometriosis, and originally went on the progesterone for that. Then, she noticed that it helped her migraines (and seizure-like events too). After the endometriosis surgery was so successful, she tried going off but the migraines/neuro stuff was horrible, so she went back on. Then, we found a renowned neuroendocrinologist, who is chief of a large urban hospital dept., who has researched and included in his practice the use of bioidentical progesterone for migraines and epilepsy that are hormone-related.
So, what I am saying is, that you could use it for two things at once! The dosing is a little different for each. There is info on that same site (Elizabeth Smith on Dr. Lee). If you can't find it, I can try to send the links.
My daughter was originall diagnosed as estrogen-dominant, and had cysts, even before the problem w/endometriosis, so the progesterone opposed that.
However, after a few years, the neuroendocrinologist did say that a flare of her migraines might mean that she was on too much progesterone at this point (it accumulates in tissue) and that, as you said, it could be causing some erratic estrogen levels. So, she has gone down to 20mg for days 13-26, from a high of 50mg days 1-12 and 70mg days 13-26.
One other thing: do you know about excision for endo? There are controveries with endometriosis, just as there are with Lyme. Lupron, surgery, cauterization etc. versus excision w/scissors. PM me if you want doctor names. It was miraculous for our daughter, and for some others, but is not for everyone.
IP: Logged |
posted
I have had migrains everyday. Of coarse like everyone else nothing seems to help much. I have several different meds i can take to try to curb the headache as long as i can catch it early, but usually even this does not matter and WHAP it hits hard and fast.
I did finally went back to GP doc to see what other options for the headaches I had. I was shocked to find out that I actually had a rib out of place causing the headaches to be even more severe that what I normally get. He adjusted me and did a muscle stimulater(3 x's) and the headaches did lesson, no they did not go away, but a substantial difference. (my primary Dr is a DO)
I am not sure if this is the case for your or anyone else but it is worth checking into. I would have never guessed that you could put a rib out of place without being active! Go figure.
All I know is that although I still have the daily headaches I am not balled up on the bed wrenching in pain everyday. The meds seem to take most of the edge off so that i can function.
The way i see it is that at this point i am willing to do or try just about anything to feel partly normal in this vicious cycle.
-------------------- Lyme Newbie...be easy Posts: 3 | From Texas | Registered: Mar 2009
| IP: Logged |
posted
I am not a lymie, but benadryl and Headon help my migraines. My daughter has an intractible headache and nothing helps her much, although Headon helps sometimes if it spikes too much.
Anyway, she spent some time in a headache clinic to try to help hers and one of the protocols was benadryl. It did not help her, but everyone is different.
Just thought I would mention those 2 meds because they are cheap and easy to get.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
One of the members here has been saying that her LLMD (and I think it was *the* Dr. B) told her that babesia can have a one week and/or two week cycle.
So maybe it is from babesia.
Migraines are a babs symptom.
Maybe you could try knocking it down with herbals if you don't want to go back on prescriptions.
Something like Enula, or maybe cryptolepsis? I dunno. I would do artemisinin, but I think I remember that that is one you can't do. But since babs can form resistance, maybe put something like Zithromax with one of the herbs.
Good luck!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Shosty
Unregistered
posted
Anti-convulsants like Topamax have helped my daughter, and also acupuncture.
But if you have a problem every two weeks, the use of Topamax may not be warranted. If your migraines go on for days, every time, though, and especially if you get auras, you might want to ask to try something like that.
Lamictal is a great one too, or mixing the two (Topamax keeps weight down).
Have you tried triptans like Imitrex or Maxalt?
The fact that Icy Hot helps would seem to indicate a muscle involvement. Massage or acupuncture might help with that. Neck muscles and migraines interact in both directions.
We also know people who use Cymbalta for migraine.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic