Topic: Help Please! Any ideas to treat chronic severe headaches?
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I think that my new found more severe and ongoing headaches are from herxing because I am on new medications.
But i have not been able to find relief and they are very severe and so very painful.
Any ideas or tricks you have found that help.. much appreciated.
Breathing exercises are the only thing I have been finding to somewhat take off the edge but it is temporary and I have to be doing it every minute that i want to get that result.
Thank you for any ideas.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi ya Springshowers,
I have had headaches for almost every day for 2 years. I have clusters of 3-5 days when they are excruciating....nothing (medication) touches them.
The best help that I have found is to buy tube socks and fill them with some rice..tie the end and then heart in micro for one minute 30 seconds and tie around my head. Alternating with ice packs also brings some relief.
I have worn these 'sock turbans' for almost two years now....even in public. I don't care what people think
Try it, it just may bring you a bit of relief too!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank you for the quick answer. I will try it! I am willing to try anything. I can see you totally relate and medications and various things do not touch these kinds of headaches. They are so horrible.
Thanks again..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
I've found that heat offers some relief, as well.
Posts: 366 | From MA | Registered: Apr 2006
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi springshowers. My severe headaches are from Babesiosis. They are horrendous!
The only thing I have found to help is Amrix which is a prescription med. I believe it is a muscle relaxer. Unfortunately it can cause fatigue, but it does reduce the headache.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
I had headaches daily for 9 years. Nothing helped much. I started seeing a new llmd about 4 months ago. He put me on the Dr. Schumaker protocol.
Actos for 5 days and then Cholestrymine as tolerated. I had to go slow with the cholestrymine but am up to 2 scoops daily now. I have been doing this for 2 months.
I have not had a headache in almost a month after being on the protocol for about 1 month. I am not saying this protocol is for everyone but it sure seemed to help me in regards to headaches. Maybe ask your doctor about this protocol.
Posts: 27 | From Boulder, CO | Registered: Sep 2008
| IP: Logged |
massman
Unregistered
posted
Find a Doctor of Chiropractic that uses adjusting developed by Dr. Vern Pierce.
Did this w my ex + migraines went from 14 wicked ones per year to 1 moderate one per year.
This worked, IME, about 90% of the time on people I tried it on.
IP: Logged |
posted
Hi Springshowers, Have you tried imitrex? These headaches are really unbearable. I had them for 6 weeks straight every day.
Where are you headaches...top of your head, back of your head, one sided?
I use crushed ice packs on top of my head, face and back of my neck as cold as i can stand it.
Sometimes I try a really hot bath with steaming hot washcloths on my face re-heating them as soon as they cool.
I also take imitrex and exedrin migraine.
Posts: 677 | From Virginia | Registered: Sep 2002
| IP: Logged |
massman
Unregistered
posted
Ahhhhh....the love of drugs !
Mix 'em up.
Anybody concerned about side effects ? Liver toxicity ? Further stressing already greatly stressed organs ?
IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank you for all the ideas!
I do have cholestrymine but not the actos. I am not sure how that ends up helping headaches but thats Great to hear it helped you. I will read up on it..
I have not tried imitrex but i have tried Excedrin. I already am on mscontin for severe all over pain but it does not do anything for the headaches. I had the Doc give me a a couple migraine med samples a few months ago. I just do not respond to meds well when it comes to headaches.
I will look up the Chiropractic Technique. I used to have a great chiro whom worked with my lyme and did Flexion-distraction in a way that did not aggrivate my lyme. I have tried a few since him as he had to move out of state. Nobody can do it even close to what he did. The difference in chiros is so huge its weird. And when you have Lyme (well for me) Just an adjustment sets me off into a flare big time..
I am trying some heat and ice and it is taking a little of the edge off. Anything at all is a bonus!. My doc was asking me how I felt and I said i can not really tell because the headache is so bad my perception of all else I feel is blurred and masked because of the headache.. Its a weird intensive feeling..
Thanks again.. for all the suggestions and ideas.
And oh.. the pain is on top of my head and sides and front forehead and eyes and behind the eyes... and it does radiate down the sides towards my ears and feels even like I have earaches too and down the back of the neck to create shoulder tension on top of it.. Ok thats alot of my head I guess but those are the focal points.
And of course do not Move!! or the pounding starts and gains momentum until you sit perfectly still again and do not movel!
So.... can we say that headaches are all from inflammation ???
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sorry you have such a bad headache...I just read this on
under medical...folk remedies...it said that a couple of glasses of Gatorade alleviates bad headaches right away...I know it has sugar, but if your desperate, maybe you can try it,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
"And oh.. the pain is on top of my head and sides and front forehead and eyes and behind the eyes... "
It was the kind of pain that made me cry. I was on Doxycycline at the time. As soon as I got off, the intense pain went away. I agree with Pabs post above, some medications can increase intracranial pressure.
Also, yeast or bacterial sinus infections can cause pain on top of head, behind the eyes, etc:
but it works for me. PB
Posts: 78 | From Maryland | Registered: Jun 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thanks Gael for the idea. I have actually been downing some of the Sobe waters and my son had some gaterade and of course water. I was worried it could be hydration issues.
Pab - Can you tell me what Cylcine meds are? I tried to look that up and did not really understand.
I am on IV Flagyl and Zithromax and doing IV EDTA too.. Maybe its from the treatments.
My eyeballs are really red too and people keep saying I look like I am crying constantly. I think its the infection showing up from the treatments.
So hence.. Herxing .. Right?
And Yes Baths baths baths.. have been helping some. At least for a couple hours it cuts the edge a bit.
But it grueling when you do not get relief for days and days and getting nauseous too..
I think Morning is right in the fact that when i stop treatment or slow down it may help with the headaches. I hope so.. since these have had onset from when the treatments started...
I would like to get over this and be able to keep doing treatment though.. But we will see.
Thanks everyone!!
I can see i am not alone in these headaches.......
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Cycline meds= doxycycline, tetracycline, minocycline....looks like you are not on any of those.
My guess would be the IV Flagyl. The first time I took Flagyl I had a rip-roaring headache the entire time....It took days after discontinuing for the headache to go away too.
Good Luck hope you feel better.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
The actos is supposed to help with the herx. My llmd says some skip that. As far as the cholestrymine helping headaches I was skeptical too and obviously it may not help everyone.
I told my doc my main symptom was daily headaches. He gave me this eye test that I failed badly.
His theory is that the antibiotics were killing bugs but my system was really struggling to get them and their toxins out and he uses the cholestrymine to possibly help the body in that regard.
Posts: 27 | From Boulder, CO | Registered: Sep 2008
| IP: Logged |
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Just wanted to add that it could be encephalitis. My first year of treatment I developed horrendous headaches, especially near the base of my skull.
My LLMD prescribed Diamox which helped tremendously.
I was taking pain pills and muscle relaxers which really didn't help. The only thing they did was make me pass out eventually so then I didn't feel the pain.
Diamox, ice and massage worked for me.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6159 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
posted
Diamox helped me a lot, too -- the encephalitis is nearly unbearable pain.
I also found amazing relief from migraine meds (imitrex, maxalt, zomig, etc.) I never realized that a lot of the horrible head/neck pain was a migraine until we treated me experimentally, and it worked.
We tried topamax for the migraines, as a preventive -- it did help the headaches, but literally made me crazy -- I had horrible cognitive and mood effects from that, to the point I couldn't function. Apparently it works fine for some folks, though.
Hope you find some relief!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Diamox didn't help me with my headaches, which were monstrous for a couple of years. My LLMD says it helps about 50% of his patients. I found Relpax to be about the only med to touch the headaches.
Most importantly, keep treating whatever it is that is causing the headaches. For me, it was not only lyme but babesia duncani (prev. WA-1). That is key to getting rid of them and living a normal life.
I take Relpax ever-so-sparingly, as it does tend to make you feel totally whipped. Still, when your head hurts that much you really don't care if a med puts you down so long as the pain STOPS.
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi Spring,
I use those squishy blue ice packs and pack my head neck and shoulders in them every night when I go to bed.
I usually feel a lot better in the morning when I use them.
I also keep them on the back of my neck and shoulders in the car and while watching tv etc.
They say lyme hates heat and I know some on lymenet use heat, but that just seems to make mine worse. A sports therapist told me it's inflammation, and the ice is best for that.
I also take Zomig, a migraine med, but it is expensive and I can only take two a week.
It is supposed to be hard on the heart, and I do feel short of breath when I take it. So I only take 'em when the pain gets really bad.
I also tried Topomax for awhile. I felt really spaced-out, but it is a good preventative. I had to quit taking it after awhile; got very short of breath and had chest pain.
Aleve sometimes takes the edge off too.
Hope you find some relief.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You got a lot of great suggestions above. Esp impt is detoxing the neurotoxins, whether using cholestyramine, coffee enemas, colon detox, etc.
Also, you may need to slow down on your treatment so that it's tolerable. Talk to your LLMD about it. Many meds do cause bad
migraines/headaches, esp if you are prone to them. I get them from 75-80% of meds---including Welchol, which is similar to
Cholestyramine. Let us know what happens as you try different avenues. Personally, I need a number of meds to get a migraine
under control, but I've had them for decades. But they are getting a lot less frequent and severe with treatment---but still no fun.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to many good replies above, there may be something of interest in notes from my own searches:
----------
After addressing infection, getting toxins out: Liver support is vital. A stressed liver can create all kinds of pain. you may need some liver support in addition to cholestyramine. That helps take out toxins but does not really nourish the liver.
Carrot juice or some high quality greens powder can be very helpful for the liver and give you a nice amount of condensed vitamins and minerals. Both are good for complex sugars, too. Sometimes, you might just need more good sugars for your brain.
---
Emergen-C packets? They help me. With lots of water.
----
Going gluten-free?
----
While sometimes chocolate can trigger a headache, sometimes, it can relieve it. However, dark chocolate (73% or higher) is best.
---
Cranial-sacral therapy: look up the Upledger Institute to find a doctor near you. this is firm but GENTLE, not "snap + crack" or "twist + shout" avoid those.
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