Topic: has anyone had CLUSTER HEADACHES go away with lyme treatment?
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
????? thank you very much.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I had horrible headaches on one side and always the same area. It went away, I think flagyl helped me a lot and also longterm doxy.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
posted
I had migraines (but not cluster) since puberty. Having undiagnosed lyme and co for 20 odd years made me so chemically sensitive I could get a migraine off the smell or someones deodorant or dish soap etc. Now many years later, 2 years treating for lyme and co, no more migraines. lpkayak - yours are cluster migraines? any improvement at all with lyme treatment?
Posts: 234 | From BC Canada | Registered: Aug 2008
| IP: Logged |
posted
I have cluster headaches. They began simultaneously with my Lyme infection, so they are surely related.
Although my neuro calls mine "variant cluster" headaches because the pain lasts for days instead of hours. Enough to totally incapacitate me and make me wish for death to make the pain go away...thus the term "suicide headaches", I suppose.
O2 therapy did not work on my clusters, though I've heard that it is supposed to be pretty effective.
I CANNOT take flagyl, it triggers them within hours and they don't go away without triptan injectables. And even that doesn't work sometimes. Flagyl is my worst enemy when it comes to my clusters.
I started verapamil and lamictal almost 3 months ago, and I haven't had one since. I'm taking biaxin, malarone, and tindamax, which I started after I began the verapamil/ lamictal combo.
They had me misdiagnosed with trigeminal neuralgia for a while, until after I tried a dozen anti-seizure meds and still nothing was taking my crushing head pain away.
So, no, I'm not sure if they are gone yet, but I've only restarted tx in December, and the neuro meds seem to be holding them at bay.
I do, however, panic everytime I get the smallest of headaches, afraid that it's going to blow up into a cluster. I'm sure if you suffer from clusters you can understand why!
Posts: 12 | From NW Ohio | Registered: Feb 2011
| IP: Logged |
posted
headaches/pressure has been one of my most dibilitating symptoms. High dose amoxy was the only thing that helped.
Reading Pamela Weintraub "Cure Unknown" put it into perspective for me. The same thing worked for her but we're all different.
I feel like I'm beginning to relapse so I guess I will try again. BUT I was headache free for 6 months.
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
YES, YES, YES, my headaches went away with treatment (though I'm still being treated).
I've had what the doctors call migraine headaches, cluster headaches and vascular headaches. MY WHOLE LIFE!!!
I also stay away from asparatame and I think that helps too.
posted
this is a great thread, thanks. 'migraine' since teens, lyme tx x1yr, syptoms as far back as 10 yrs...wait! 30yrs?
makes ya go hhhmmm!
my head hurts, but, working on it....
Posts: 40 | From CT | Registered: Dec 2010
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you guys very much. i also searched this and there is a lot of inf
it is not me with the headaches but my adult son-only one of 4 not dx and t for lyme so far
a doc told him women get migrains and men get clusters
not sure if that is true after reading the search i did on here...but it is sometimes hard to know if a poster is male or female
5 yrs ago he had a bunch of these headaches ...he feels them coming on...thank god cuz hes a salesman and has to pull over in the car...his eye tears...pain in eye, jaw, teeth...i think he says he feels his teeth loosen up...
back then mri was normal
he didn't have them again til last week. has had them daily...but i think he said they hit at night...and they always lasted about 5 min but once monday one lasted 2-3 hrs...thats why he called me for help. it stopped him from working.
so thanks a lot for inf...please if anyone else has anything to say let me know. i need to pritn this and my search out and go thru possible ways to manage them for him.
doc yesterday dx him clinically with lyme...and told him to use peppermint oil for pain...but this kid doenst like any docs...and it was a real insult to him to hear the doc say peppermint oil for something that hurt so bad. one person in my search said that helped them tho.
so blood has gone to local lab for regular stuff and to igenex for Bb-couldn't do all co's yet ($)
thanks again...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
HA tx...you will find a thread that lists several other migraine meds. I have been through all the pain meds, preventatives, and most migraine meds though there are a few new ones out now. I haven't. me.... topomax 2 per day for maintenance (not applicable in your son's case at this point)
Fioricet-very good headache relief, very commonly used, not necessarily effective for full on migraine
vicodine-when the going gets tough
Imitrex-well known migrain med to be taken at first sign of migraine, constricts blood vessels limited number dispensed initially so I try to manage with other means
sometimes a 'cocktail' of Imetrex, pain reliever and benadry then off to bed.
head pain can be debilitating, some of us have to learn to function with a daily headache. one thing doesn't work for everyone. I fortunate have a compassionate physician who gives me what I need. If your son wants help he has to be pushy, call md. demand relief.
ps, wish this site had spell check : P
Posts: 40 | From CT | Registered: Dec 2010
| IP: Logged |
posted
I refer to the clusterheadaches.com site often.
It's kind of like this board, only for us clusterheads as well. It's a great place to share medication advice, experiences and various treatments that have worked for us.
Posts: 12 | From NW Ohio | Registered: Feb 2011
| 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!
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic