I HOPE YOU ARE DOING WELL. OR GETTING BY. OR HANGING IN THERE. WHATEVER, HELPS YOU. I CAN'T BELIEVE HOW LONG AND MUCH MY HEAD HURTS. I HAVE NOT HAD A PAIN FREE DAY IN 6YEARS. IT IS AMAZING HOW PERSISTENT THIS DISEASE IS. OH, YEAH, IT IS EASY FOR ME TO LOSE PERSPECTIVE WHEN I AM IN THIS MUCH PAIN SO OFTEN. BUT, GOOD NEWS IS MY HEAD PAIN HAS GOTTEN LESS INTENSE OVER THE YEARS.
DOES ANYONE ELSE EXPERIENCE THIS? IF SO, HAVE U DISCOVERED ANY REMEDIES THAT ARE NATURAL AND HELP YOU?
I USED A HOT BATH AND THAT HELPED A LITTLE!
I AM NOT STARTING THIS POST TO HAVE A PITY PARTY. THAT MAKES MY PAIN AND LIFE WORSE, BUT, I AM STARTING THIS POST TO SHARE.
TAKE CARE OF YOURSELF, B Posted by PBizzle (Member # 11463) on :
Wow. I feel your pain. I haven't gone one day in the last three months without a headache or some sort of head pain and/or pressure.
Recently, I've started to get moderate to severe earaches with my head pain. Sometimes it's intolerable and all I want to do is lay on the floor and cry. Anyone else experience this?
My doctor gave me Relpax (a migraine medication) to help with my headaches. I only take it when my head throbs so severely that I can't function.
Taking OTC pain medications never relieves my headaches. I've tried EVERYTHING, including numerous sinus and allergy medications. I'm getting frustrated.
I'm open for any suggestions.
Posted by Lymetoo (Member # 743) on :
MANGOSTEEN. I don't care who you buy it from as long as it is the original mangosteen supplement. It works.
Posted by Anneke (Member # 7939) on :
I highly recommend a good pain management doc!! I lived with 24-7 headaches for a couple of years, and it was unbearable. I have very very few headaches now. Cymbalta and a low dose Fentanyl patch have done the trick. I plan on staying on these until my treatment is over and I am able.
Despite all the bad press, and misconceptions, opiods are quite safe. They are safer than acetometophen and other anti-inflammatories. Most importantly, Fentanyl does the trick.
Chronic pain is NOT benign. It actually damages the brain. It is very important to treat it.
Anneke
Posted by mag (Member # 8920) on :
hi lyme tu
are you taking the mangosteen. how does it work? i tried noni but - not much effects I had such a bad headache - two weeks ago
( but I have one every day)
I used essential oils and that helped thanks so much
mags
Posted by blueocean (Member # 5860) on :
thanks for your posts. pbizzle, i get ear pain too. i have constant pressure in my ears. it is constant. take care
Posted by kelmo (Member # 8797) on :
lymetoo can provide you a good source for mangosteen. She is living proof it works.
We're working up to it. My daughter's LLMD says that the real stuff is so powerful he doesn't want her on it with all the abx.
It may be something we use to maintain health after the load is diminished.
I'll be contacting you, Lymetoo. It will be a little while, yet.
Kelly
Posted by Lymetoo (Member # 743) on :
All I know is that it works.
You can look at research here and on PubMEd or MEdline.
OK, it was not really that simple and I spent a year in lyme treatment before even testing for it. Can you say "Duh?"
Now after two rounds of babesia treatment lasting 2-3 months each, head is much improved.
ONLY Relpax (and sometimes Imitrex) helps the really evil ones. Nothing else touches. As in, NOT even pain meds -- at all. I don't bother.
Relpax and Imitrex are vasodilators and must be taken very sparingly. Also, they cost approximately a bazillion dollars per pill.
So, people with constant headaches improved ONLY by vasodilators (if then!), please consider babesia. Treatment may not be fast. Repeat as needed.
Michelle
Posted by kam (Member # 3410) on :
I had migraines for years. Then I had the bite with a ring around it on my arm. Then, headaches that the imitrex would not help. They were different.
I felt I had found a cure for migraines, but didn't have a clue as to what it was. HA!
No migraines since 2001, until recently. I think they are starting back up.
But, I did have something else going on in the head that was really scary. At first they would last for about 3 days. I could not eat, drink, move, open eyes, etc without tossing my cookies...except no cookies to toss because nothing was on my stomach.
I felt I should not be alone during these times but there was nothing that anyone could do. I just had to wait it out.
I also wished I had a gun to stop the pain during these times. That thought in itself concerned me.
Not sure where I am going with this. I was a happy camper because this head stuff seemed to be getting less and less with treatment for the lyme disease.
When I did have it, it was maybe 24 hours instead of 72 hours.
And I was able to keep water down me.
But, then it hit hard and fast again recently.
Did I over do it?
Was it something I ate? Yes. I believe part of it was something I ate. I know i can not do flour, but since I was doing so well I did have several homemade flour burritos. I also know i can't do gorp. But, since I was doing so well, I thought I might be able to do grop again...wrong.
Was it part of a herx?
All I know is each time it happens I never want to go through it again.
I am going to the primary doctor's this Friday to see if she can get approval from the insurance company for imitrex or some other meds.
I think it is time to try them again.
I also will be continue to keep the flour, sugar, pasta, white rice, potatoes, etc out of my diet.
And I had not been drinking water so I will try to do a better job of it.
I also know something changes chemically in my brain when these hit. I do not think of ending things as a solution to this battle until this brain thing hits. It scares me that ending things seems to be the only solution when it hits now.
I do need to figure out a plan Calling people does not work...because I can not make a phone call during this time. I am pretty much left on my own to deal with things.
Hopefully, I will find meds that will help. Hopefully, the insurance will provide these meds.
That seems to be my latest solution for now.
Posted by orrn (Member # 6672) on :
The one thing that helped my headaces and neck pain was Diflucan. I have been off of it for several months now and they're back. Lucky me!!! Hope you find something that helps!
Orrn
Posted by papersquare (Member # 11497) on :
Hey there, I have suffered from frequent and medium strong migraines. Taking Omega 3 oils regularly has made attacks less often, less bad and they went away with less ibufrofine. It is contained in fih oils (salmon, I think) and also in different oils, especially in rapeseed oil. Latter one may be prefered due to heavy metal toxicity in fish oils. Maybe this helps. Pet PS: no more Posted by kam (Member # 3410) on :
I did not get any sleep last night because I am out of the samples of the lunesta the primary doc gave to me.
It brought back memories. I noticed when I was getting the migraines that they stopped when I was not getting sleep.
I read somewhere that sleep deprivation is a treatment for migraines but I really don't think treatment is the proper word.
Now, I recall why I was not getting the migraines...I was not getting sleep.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: MANGOSTEEN. I don't care who you buy it from as long as it is the original mangosteen supplement. It works.
My statement still stands. This is a free world and we have freedom of speech the last time I checked.
I'm not selling anything here...only hope. You can take it or leave it, but do not INSULT me, LymeEd.
I know you're so closed minded that you will never check the research, but others are smarter than that.
If I've now insulted YOU, I'm not too concerned.
Posted by Lymetoo (Member # 743) on :
LymeEd, Have you ever heard of doctors telling their patients to drink cranberry juice to keep the bacteria from sticking to the lining of the bladder?
How could that possibly work?? It's only a fruit juice! Read the research.
Posted by papersquare (Member # 11497) on :
hey lymetoo, there you are again. Cranberry juice contains a sugar called d-mannose which actually prevents e. choli bacteria from sticking to bladder cells. That means the juice or pure d-mannose (can be found and bought on the internet) can cure cystitis if caused by that type of bacteria. It is said that most bladder infections are caused by e. choli. So this can help. Anyhow, could you answer me about the question if the rifing really helped you? Actually I heard that there are also effective rife frqs that can cure bladder infections. Take care, Petra Posted by wenan (Member # 10993) on :
Blueocean - I am so sorry -agghhh that's awful!! I can suggest only two things - both of which have worked wonders for me. The first is an electrolyte supplement.
My doc became suspicious about the headaches, as I seemed to notice my lips would often become chapped during a bad few days of headaches. She suggested I drink pedialyte. I noticed a difference and soon replaced it with a regular electrolye supplement (Electrolyte Synergy by Designs for Health). I take it every day sometimes twice a day.
I also take bioplasma, by Hylands (homeopathic). I notice a huge difference. I still need to be careful. Wheat and dairy -- big no no's. I do very hot epsom salt baths at night and I have to put an icepack on the base of my neck right when I finish to ward off a migraine.
I hope this helps you or others. Hang in there!
Posted by DolphinLady (Member # 6275) on :
There are different causes for headaches and thus different solutions.
If it is due to inflammation, then taking Xango mangosteen juice might help because it has anti-inflammatory properties. It has helped many and the testimonials are rather impressive. I do not have any financial interest in this product.
Blueocean,
I hope you find relief very very soon. Blessings.
Posted by blueocean (Member # 5860) on :
thanks for your posts again.
wenan, thank you for sharing. how would you describe your headaches?
dolphinlady, thanks for your blessings!
Posted by Lymetoo (Member # 743) on :
papersquare...I sent you a PM yesterday.
Posted by papersquare (Member # 11497) on :
lymetoo, thanks for your pm, but I still don't know if it helped you yet (the rifing)! I'd really, really love to know. I can't reply via pm because it doesnt work! Pet
Posted by Lymetoo (Member # 743) on :
PM doesn't work????
Yes, it's helped me. I took abx for 4+ yrs first. I feel the rife has helped keep me off abx for 2 1/2 yrs.
Posted by groovy2 (Member # 6304) on :
Hi All
I have to agree--Babs-- Gave me migrains for yrs--
Now I only have them when I am herxing-Jay-
Posted by Lymetoo (Member # 743) on :
Sorry pet!! I just went back and read the PM.
Hope we got it all straight now! Posted by wenan (Member # 10993) on :
Blueocean, My headaches were typically concentrated on the left side of my head. They would go from my sinuses, over my skull, to the base of my neck - nausea, the works. They would last for up to 7 days.
Posted by ByronSBell 2007 (Member # 11496) on :
I have had a chronic headache for 17 months that has not gone away if that gives you any comfort? Posted by wrotek (Member # 5354) on :
17 months ? I have 6 years constant headache ^^
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by wenan: Blueocean, My headaches were typically concentrated on the left side of my head. They would go from my sinuses, over my skull, to the base of my neck - nausea, the works. They would last for up to 7 days.
Have you tried the migraine meds? Definitely sounds like a migraine.
I used to have them SOOO bad and so often.
Posted by ByronSBell 2007 (Member # 11496) on :
When I say I have tried every headache drug in the world I have! I have been to 5 neurologist and 3 pain specialist, none of them can even take an edge off the headache.... I have a feeling it is due to constant flow of borrelia toxins or inflamation they are causing
Posted by blueocean (Member # 5860) on :
Posted by Anneke (Member # 7939) on :
To Byron and other headache sufferers -
There was a post recently about Pseudotumoral condition.(not sure on the exact name here) There is pressure in the spinal fluid and part of the brain that cause horrible headaches. Perhaps this is a root of the problem? May be something to look into...
Posted by Lymetoo (Member # 743) on :
Byron, I would really suspect babesia. Once my babs was treated, the headaches subsided. Now are 99% gone. Have one occasionally.
Have you tried beta blockers for the headaches??
Posted by ByronSBell 2007 (Member # 11496) on :
I have tried all kind of beta blockers, inflammatory drugs, pain killers, veso constrictors and dialators (almost died the night I took a veso constrcitor in ER) I have been tested for pseudo tumors, had 4 MRI's, cat scans, MRA, spinal taps OWWW! I have had everything, nothing shows up and nothing helps! Posted by spookydew (Member # 8432) on :
First, have you had MRI,or CT scan? Have you tried elavil?
I had deep seated burning ache in center head, constant with violent attacks and spasms of left temporal lobe (read by docs, of course as a seizure disorder} for 11 and 1/2 years, constant.
Second, is it headaches, a constant headache, or pain such as burning,stabbing, etc?
I took elavil for 11 and 1/2 years and it only masked. But that was relief!!! Then six months before it left I was put on bicillin cr injections 1.2 once weekly. Then on Nov 2,2005, I drank about 4 oz. of oj with 7 teaspoons of baking soda in it straight down.
I knew something was happening while I was drinking it. It is dangerous to do and don't recommend it. Can perforate bowel and cause kidney problems. It has not returned and I still drink, probably once each month.
I stir it quickly and completely.(if baking soda not disolved will cause abd. pain) I drink it fast and especially the fizz. I still have other neuro symptoms and chronic fatigue etc..that I can't seem to beat.
Strange thing is, that I don't feel any good effects without certain other conditions such as the cup must be glass and the oj must be Kroger brand with added calcium in the cardboard box.
Sounds wierd but loving a pain free head. There is always hope. During those long years I never though I had a future. Now looking forward to it.(can't really believe I'm saying that)
So, could have been bicillin cr. Or could have been the drink with some chemical reaction of baking s. and citrus and calcium.
Hope everyone gets resolution from their px as I have.
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I have 6 years constant headache ^^
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