HEADACHES - What's your treatment?

[lcollins64]

Hey everyone,
I was wondering about treatments options that you have tried for our kind of headaches? After surviving with CFIDS/ME/FMS for 20+year you'd think somehow I would have found some effective treatment; but no; usually headache will be bad for 3-4 days then go away. I have had them to last longer; but something about this one feels slightly different. I describe headache as a migraine/sinus/tension headache. Light and noise sensitivities, feelings of nausea, pain behind the eyeballs and in back of head at base of skull, cement neck muscles and shoulder muscles, and overall I am very irritable! None of the new migraine drugs have helped. I once tried Diamox; but it made me feel so very strange and lightheaded and faint I guess is how I would describe it. Are the Diamox Sequels any different? I used to take Midrin- now they don't make it anymore, it didn't get rid of 'em either, just helped take the edge off. Toradol does nothing.
My current headache has been with me since May 29.
Meds tried for this headache:
Medrol Dose Pk
Darvocet
Lortab 5
Advil
Soma
Hospital outpatient: IV of 750 mg Depacon, Phenergan, 1 0f 3 rounds of D.H.E. (made my chest and throat tight, only did one) IM shot of Demerol
MRI - says normal
I feel like I cannot think; big blanks in my memory;
Dr. wants to refer me to Emory Clinic - next available appointment - September 15.....ahhhh...it's June!
Will go to the orthodontist to check my retainer bite plate (TMJ) to see if it is causing problems...
But really I have just about had it......any suggestions would be helpful. Thanks!
You can reply straight to my email address; as right now I am stretching it to even be on the computer, and then I might forget I posted this here unless your posts come to my email.

 

[Jody]

I will post to your email.

Jody

 

[lcollins64]

Thank you Jody!

 

[Cort]

so sorry to hear about your terrible headaches. This is f from an upcoming newsletter. Dr. Baraniuk is a pretty well known CFS researcher and he treats patients as well. Hope it helps!

The Migraine Connection At the last CFSAC meeting Dr. Baraniuk talked about a possible connection between and chronic fatigue syndrome. He noted that not only do many ME/CFS patients have migraines but that most of his migraine patients meet the criteria for ME/CFS. Furthermore both migraine and ME/CFS appear to involve abnormalities in blood flows in the brain. Both sets of patients have problems with stimuli such as noise, light, smell, etc. and both have a kind of relapsing/recurring nature. Behan and Chaudhuri noted several similarities between CFS and migraine about 7 years ago.

Many migraine and ME/CFS patients are sensitive to light and I asked Dr. Mavrindrin about this. He noted that the vasoconstrictor Imitrex is used to treat migraine another hypersensitivity reaction. My notes suggest that Dr. Baraniuk has used Imitrex successfully to treat light sensitivity reactions in ME/CFS.

 

[Sushi]

I have a big problem with this sort of headache too. And I do find that when the migraine (or whatever you want to call it) is there, sinus pain comes along for the ride--probably due to the migraine enlarging blood vessels and increasing pressure on sinus passages (my guess).

I read a lot about this and discovered a couple of interesting things: migraines are affected by diurnal rhythms of different body chemicals like hormones and neurotransmitters. If you can experiment with adjusting your sleep/wake times you might find a schedule that keeps them at bay. For me, it is getting up early (7 am is waay early for me!) that helps. But...adrenals get repaired if you sleep till 9 am (so they say). What to do?

The other interesting thing that kept showing up is that vasoconstrictors help. I had no headaches when on strattera (which is a norepinephrine reuptake inhibitor--norep is a good vasoconstritor). I was on the low-dose strattera for OI and it worked like a charm. But it is expensive and I was a bit leary of taking it long term, so weaned off.

Taking another look at vasoconstrictors, I realized that dopamine is also one. I have tried, with fair success, using a tiny dose of generic wellbutrin to stave off migraines. It worked 100% for a few months, then I think my level of detox got too much and I started getting migraines again.

I do find it is related to toxicity for me and using FIR sauna also helps to zap one when it comes.

I'd also be interested in others' experience here. The drugs for migraines make me feel like calling 911--seem to raise BP a lot, and mine is low.

Sushi

 

[Lisa]

Hello lcollins64! (is there a shorter form, like lc maybe? hehe)

A lot of information is out that sulfur can be a serious problem for people who are prone to migraines. Through other research I have done, I came across similar symptoms being caused by the body having trouble processing sulfur and people having relief from the headaches this caused by supplementing molybdenum.

For Jeremy and I, we both started getting crazy headaches every night this June after a supplement adjustment. Nothing helped and in Jeremy's case he usually has a similar headache every few months so we had already tried most remedies that are available from home. In early July we added some molybdenum to our daily vitamins and neither one of us has had a migraine type headache almost 4 weeks now.

A good test for us was the 4th of July. We always get very ill from the fireworks around us and the air reeks of sulfur. The molybdenum arrived only two days prior so we were taking very minor amounts to test it and did have the normal 4th of July headache starting. I had us take a little more throughout the night. It took care of the headache and seemed to make the night go easier for us than usual.

Hope you find relief soon,
Lisa

 

[Frickly]

Ouch

With the help of a friend and RN I started my sister on a group of supplements for her allergies. She has terrible migraines and misses alot of work as a result. Since she has started she says she has only had three headaches that never turned into migrains. Also, She has not taken her excedrine migraine once since she started the supplements. This is very unusual for her. My friend says it is most likely due to the cod liver oil (omega 3) which is an anti inflammitory. She also takes the following, any of which could contribute.

Nordic Naturals Cod liver Oil
Thorne multi
Vitamine c
Thorne Quercenase
Vitamine D
Meriva
4life transfer factor
zinc picolinate
Probiotic

My thought is it is one or the combination of anti inflammitories: Quercenase Meriva or Cod liver oil as she has only been taking them for a short time.

 

[SDD1244]

lcollins64,

I'm so glad you started this thread, as I've been struggling with severe headaches for years and they've been pretty bad lately.

I'm hoping my new neuro-chiropractor can help these headaches. Already he has done something amazing. For the first time in years, I can sleep on my right side again.

What I'm doing now for headaches is taking Relpex.. which usually gets rid of them for awhile and massage therapy (which can be expensive). I hope to get to the root cause of these headaches and hope that after my treatment, they will finally go away !!

 

[Wayne]

Headaches - Helpful Therapies

Hi All,

I'm going to make this short tonight. But wanted to mention three significant things that have helped my chronic (decades-long) headaches.

1) Extraction of a non-symptomatic root-canaled tooth.

2) Atlas Profilax (unique therapy to align the atlas in a way that chiropractors are unaware of).

3) Just recently, I've found that far infrared (FIR) saunas are helping my headaches. (They used to aggrevate them).

I still have daily headaches (mostly show up at night), but they are probably about 75% better since doing the above. I've noticed that wearing a night guard has helped as well, but wearing it disrupts my sleep.

Regards, Wayne

 

[Frank]

-Fix your gut
-avoid allergens, toxins

 

[Frickly]

migraines

I also beleive we need to get to the root cause. I took relpax for a while and was thankful to have it as I had terrible migraines alot. Since I started my antibiotics, glutithione/ATP and many supplements, I almost never have them. We have alot of inflammation in our bodies. If we can get this inflammation under control I think it solves alot of pain issues.

 

[SDD1244]

Something that I think every chronically ill patient needs... free acupuncture charts !

When I have a headache, my gallbladder channels on the side of my hip and legs hurt. Anyhow, this website list all kinds of acupuncture spots that you can press for various health conditions, including gallbladder channels for severe headaches !

http://www.all-about-acupuncture.com/acupuncture-free-charts-all-meridian-points.html

 

[Angel]

Headaches/sodium chlorite pack 25%

Let me count the causes of a headache - - there must be hundreds...

When I was taking the medications, Maxalt was the one that would help. Going to the ER for a shot did not.

In 1995 I had a car accident that resulted in a headache immediately. I had that headache every day for 4 years. In the beginning it was really bad, and often changed into a migraine, and it was 24 hours a day. At the end it was usually just an hour or so, and not as severe as often, but on occasion would still become a migraine.

I treated it with many massage or physical therapies. Tens units or electric stim made it worse. Ice helped a bit to reduce inflammation.

One of the main things I noticed was that I often developed a headache around 3 p.m. in the eyes, and it would get worse as the evening went on, often becoming a migraine by 9 p.m.

Last year a Doctor started me on sodium chlorite drops. You begin by putting 1 drop of sodium chlorite in a glass and adding 5 drops of citric acid. You wait 4 minutes and add water, or juice. I use Pomegranite juice, because it covers the taste and smell. Drink it, wait two hours and repeat the dose.

On day two you use 2 drops of sodium chlorite and 10 drops of citric acid two times, two hours apart.

On day three you use 3 drops and 15 drops. When you reach the level of drops that makes you nauseated, you back off two drops and 10 drops and stay at that level for awhile. For me it was around 7 and 35, or 8 and 40.

I noticed that my evening headaches disappeared. I also slept better and had more energy.

recently these symptoms have returned. I stopped taking the drops several months ago because of finances, and apparently whatever was in my body that the drops were controlling has multiplied, and is causing the headaches again.

I have just started taking the drops again this week. I do believe you can google this remedy online.

 

[Wayne]

Acupuncture Charts

Something that I think every chronically ill patient needs... free acupuncture charts !

Hi SSD,

I couldn't agree more! Thanks much for the link.

Best, Wayne

 

[Angel]

Headaches/Prolotherapy

I believe that my previous post dealt with headaches caused by something in the body. I don't know, maybe a virus or something.

The other type of headache that I got a lot was do to a neck injury. I was sent to a Prolotherapy specialist who gave me 8 or 9 Prolotherapy treatments in a 6 month period.

The result was a reduction of headaches by about 90%, especially the migraines. The Prolotherapy really strengthened my neck. It grows new tissue and collagen and can put additional space between your disks taking some pressure off of problem disks or nerves.

I would say that Prolotherapy was the number one treatment in reducing my pain all over my body, including headaches, and returning me to a more normal life.

It also helped me to get off of all pain medication.

Combined with a Therbo Robotic Therapy, that lengthened the problem muscles connected to the neck, I have had a lot of relief.

I still have times where the headaches return for a time, but it is nothing like it was for so many years.

 

[Freddd]

By the mid 80s I had chronic daily headaches and real 3-5 day killers each 2 weeks like a clockwork.

The following is a joke of sorts:
Question: How can you tell a cluster headache from a migraine?
Answer: Suggest to the person that they should bang their head against the wall. The person with a cluster headache has already tried it and found it doesn't help while the person with a migraine finds it too awful to contemplate.


I was in the Phase III Stadol study for chronic pain in 1989. I was taking 15mg of Stadol every day (yuck, what a foul taste). We were using codeine for supplemental pain relief. These worked okay against the headaches. After the study the headaches continued to worsen. I charted every med I took for 6 years and every headache. In 1995 after aborting the 3rd one in 6 years I went back and looked up the first two. Every one was done the same way. I also was able to describe the cycle. If I was unable to abort the headache and took the graduated medication approach the headache was totally gruesome and lasted 3-5 days. The next headache was worse and started harder and faster. If I was able to abort the headache and keep it down the next headache was less painful and came on more slowly and gently. What aborted the headache and kept it down was the following combination. Stadol 3mg (2mg and then 1 30 minutes later same as in the study) plus 20mg of Oxycodone or 120mg of codeine or 30 mg of morphine 15 minutes before the Stadol or 60 mg of morphine without the Stadol plus 10mg of valium with the opioid. With the Stadol 15 minutes after the opiod all traces of withdrawal triggered by Stadol were averted, even when accomodated to morphine. Then, assuming the Stadol and opioid combo, if the headache would be back at hour 3 then at 2.5 hours half the dose of opioid followed by 1mg of Stadol and 5mg of valium. Then 2.5 hrs later 1/4 the dose of opioid and 2.5mg of valium, then 2.5 hours later 1/4 the dose of opioid. This mini taper was essential to keep it from coming back. The nastiness of the cyclic headaches tapered off a little more each time I aborted one and kept it down. By 2003 they were but a shadow of their former selves and came on much more slowly. The chronic daily headache was controled by morphine and the cyclic headache went away completely shortly after starting the methlb12 and the normalization of the muscles in my neck and my neck returning to normal curvature from reverse curvature of 20 years duration. Headaches have not been a problem at all in 6 years for me.

Good luck.

 

[Freddd]

so sorry to hear about your terrible headaches. This is f from an upcoming newsletter. Dr. Baraniuk is a pretty well known CFS researcher and he treats patients as well. Hope it helps!

The Migraine Connection At the last CFSAC meeting Dr. Baraniuk talked about a possible connection between and chronic fatigue syndrome. He noted that not only do many ME/CFS patients have migraines but that most of his migraine patients meet the criteria for ME/CFS. Furthermore both migraine and ME/CFS appear to involve abnormalities in blood flows in the brain. Both sets of patients have problems with stimuli such as noise, light, smell, etc. and both have a kind of relapsing/recurring nature. Behan and Chaudhuri noted several similarities between CFS and migraine about 7 years ago.

Many migraine and ME/CFS patients are sensitive to light and I asked Dr. Mavrindrin about this. He noted that the vasoconstrictor Imitrex is used to treat migraine another hypersensitivity reaction. My notes suggest that Dr. Baraniuk has used Imitrex successfully to treat light sensitivity reactions in ME/CFS.

Hi Cort,

Your comments sparked a memory. For years I had a sneezing response to bright sunlight coming from inside or from a glint off chrome while driving. I also used to be hypersensitive to bright light and had the 98% (6.5 stops) sunglasses. Sometime after starting the methylb12 all of my hypersensitive reactions went away. I rarely need sunglasses and just normal ones when I do now. I never sneeze from bright lights or reflections any more. I also don't have headaches any more. Good luck.

 

[Jody]

By the mid 80s I had chronic daily headaches and real 3-5 day killers each 2 weeks like a clockwork.

The following is a joke of sorts:
Question: How can you tell a cluster headache from a migraine?
Answer: Suggest to the person that they should bang their head against the wall. The person with a cluster headache has already tried it and found it doesn't help while the person with a migraine finds it too awful to contemplate.

So Freddd,

It sounds like you had cluster migraines?

My husband used to get them and your joke is unfortunately quite true.

He tried a medication for them for a time, forget now what it was, and all it did was abort a migraine and then he would get more of them than normal. So it was more like it put off the headache till later, it didn't really kill them.

Believe it or not, what finally ended these headaches 15 yrs ago, was a sheet of bible verses on healing which a friend had suggested he read every time he felt a headache coming on. As your joke indicated, a cluster migraine sufferer WILL try ANYTHING for relief. He did this, reading these verses aloud and while the first few times the headache came on full bore anyway, over a period of a day or two, they became less frequent and shorter duration, and within a week, they would "melt" (his term) by the time he picked up his pages to begin to read them.

Then they started happening in his sleep (something new) so we added some verses about sleep and rest and in a few days, they had disappeared.

Some months later, a migraine began to come on, and he grabbed his old pages again, ... petered out. And he has never had one since.

This was after 20 yrs of these cycles. He'd go for months back then without headaches and then he'd get one. If he had one, he knew he'd have 6 wks of them on one side of his head, and then another 6 wks on the other side.

Such a relief to be free of this torture.

Glad that yours have stopped as well. They are hell.

 

[Sushi]

Question re: migraines

I am always interested in clues about migraines. Reading about sensitivity to light made me realize that my right eye has always been sensitive to light. All photos of me taken outside, even as a child, show me squinting my right eye against the light. My migraines (a big bummer part of my life) are always on the left side.

I believe there is a brain cross-over deal between vision and left/right brain function. Has anyone else noticed a correlation between light sensitivity in one eye and migraines on the opposite side?

Sushi

 

[Zona]

Depending on what type of headache:

* lay on the floor and have someone lightly brush your hear UPwards from the nape of the neck up (trick told to me by cfs friend that works for some kinds of headaches )

* tap lightly between eyebrows (husband does this one)

* for sinus -pressure points on cheeks right to the side of each nostral, around eyebrow bone and between eyebrows. Sometimes steam helps or hot moist cloth

*migraines - wash dishes LOL -- soak hands in warm water or
*migraines - heat on feet (shifts blood flow to head same as washing dishes)
*migraines - avoid fragrances and other chems ----

my husband got migraines 28 days a month even on beta blockers. Imotrex did very little for them. He thot the house was pretty clear of chems (I have MCS) but when I moved in I discovered a few things that had to be removed. Voila! He no longer had them 28 days a month! Yup, he has MCS too but didn't realize it. When a neighbor moved in who burned incense he got them non stop again. The proof was in that puddle! (thankfully she's long gone!)

*migraines - another friend has cfs/fm and migraines continuously EXCEPT she gets a 3 week repreive when taking a course of antibiotics. Dr Lapp is her dr and he says it's because her cfs has some encephelomylitis (brain imflammation).... She doesn't want to take antibiotics continually though.

*migraines - same friend above found that ear candleing <sp> also will cause the migraines to disappear for several days. She has no clue why

Hope these help. I can't take any meds so am always looking for other ways to deal with pain of various kinds. I was trained in "touch for health" many years ago and have used pressure points etc which help some things sometimes...

zona