Hello and much thanks to all at Earth Clinic for all of the information and postings. I have been reading this site for a few years, and have used many remedies from here for several health issues for myself, dear hubby, dogs, relatives and friends. I am female, almost 50, in relatively good health but since childhood I suffer from cluster headaches (episodic) and usually the only thing offered by doctors and which helped somewhat, was prescribed Triptans. ( Imitrex, Sumitriptan) but they also had their problems, such as rebound headaches, built up tolerance to meds, i.e. needing more and more to find relief and sometimes during the last weeks of a 4-6 week cycle, not even working at all. During my period of cluster headaches, they slowly build up from one early in the am, till 3-4 headaches a day. Plus, the doctors say don't use no more than 2 Triptan pills in a 24 hour period!
I saw where cayenne pepper, or rather the capsaicin in peppers worked to relieve headaches. There are some commercial formulations you can buy without a prescription but since I am overseas for a year, and my meds are of limited supply, I decided to make my own intranasal pepper spray. Yes, I was that desperate. I took just 1/2 tsp of dried red peppers, ground them in a fine paste, mixed with a little warm water, let sit for few minutes ( the longer the hotter it is) strained it and put the strained liquid into a old emptied nasal spray bottle. Do not inhale! Spray a shot, in the nostril on same side of headache, just spray and blow your nose afterwards, but more likely your nostril will start running and your eye will tear up too. Wow, I felt the burning over the headache, but the burning sensation was gone in a few minutes, and the headache was reduced. I went on to do this every 15 mins for the next 1 hour and all I can say is that it gets less burning as you continue to use it, and the headache continued to reduce and I could get back to sleep. The next morning, I was not headachy, dopey or as brain fogged as usual when I take the meds. This gives me so much hope that my cluster headaches will not render me as useless and hopeless as it usually does. Many praises to all who suffer! This is what I tried as I had awakened with a full blown cluster headache and I knew meds would take 15 mins to even begin to lower the pain, before I could get back to sleep, so what did I have to lose, either way I would have to endure the pain for 15 mins. Maybe if I had been awake and felt it coming and started right away, it would have taken less shots of spray over less time.
I have suffered from trigeminal pain attacks for almost nine years now. At first they were diagnosed as trigeminal neuralgia and did follow the symptoms pretty closely. Later they changed and became more like cluster headaches, with the drooping eyelid, red eye, nasal discharge, tearing, worsening when lying down, etc. A neurologist at that point diagnosed me with "trigeminal autonomic cephalgia, " which if you read through all the symptoms sounds awfully close to cluster headaches.
I am convinced these three maladies are all closely related. Maybe diff. versions of the same thing. At least, all are triggering off crazy levels of pain in the trigeminal nerves.
I am VERY surprised that I haven't seen others with these problems noticing that they may be intimately and profoundly connected to the condition of the gut. When searching for studies on TAC (my acronym for trigeminal autonomic cephalgia), I found one study showing a link between vaso-intestinal peptide and TAC attacks.
As a result, I tried taking a plain (filtered) water enema at the onset of TAC attacks (not easy to do when you are shaking badly with agony) and found that it frequently works like magic to completely halt the attacks. I have found that the water temperature has to be just right in order for most of it to go in easily. If it is too cold the body seems to repel it more, and if too hot it is probably bad for the gut tissue.
Also, I have found that while 1 bag usually does the trick, sometimes it can actually make the pain even worse at first and I have to use a 2nd, sometimes even a 3rd bag. When the bulk of the water coming out is clear or nearly clear, it seems to inevitably bring the pain to a halt. This makes me think the enema may be helpful more because it is actually clearing out toxins in the gut that may be entering the bloodstream through a too-permeable "leaky gut" or aggravating diverticulae or whatever--if the vaso-intestinal peptide is being provoked by this, it would make sense that ushering the offending toxins out would remove the need for the VIP increase.
I previously speculated the enemas might be somehow stopping the attacks in that they somehow sent a signal that subdued whatever was sending the trigeminal nerves into that insane attack mode, much like I have found that sometimes submerging my head into moderately warm water in the bath tub or standing in a shower with the same temperature of water over the entire head would magically stop the attack. But after a number of years of trying it, I am now leaning toward thinking it is the actual removal of toxic sludge from the gut. The stuff that comes out during an attack is invariably brown muddy water rather than mostly half-healthy looking material.
There were some writings online by TN sufferers about a diet in which eating very "clean, " mainly vegan in my experience and limiting saturated fat intake to no more than 10 grams per day, put a stop to TN as long as the diet was adhered to. I have found that if I walk a tightrope with my diet, keeping sugar and saturated and bad fats (trans-fats, etc) to a minimum, and avoiding all chemical additives (fake colors, preservatives, flavor enchancers, etc), eating just the right amount of total calories and bulk (not too much, not too little either), and sticking to a very regular routine, not eating too close to bedtime, sleeping at the same time every day, ... I can completely avoid attacks. But wow, this is difficult for me as I have a long history of eating whatever I wanted whenever I wanted! Maybe that is how I got into this predicament.
I would be interested in hearing from anyone else who has found the gut to be a key factor in these problems, TN, cluster headaches and TAC. I should note that bowel conditions, frequency of bowel movements, composition of the chyme (ratio of soft to hard fiber, % of moisture, etc.) seem to have to be just right for me to completely avoid TAC attacks--most of the time. But other times of the year, I can get back into AWFUL eating habits, eating way too much sugar, bad fats, junk, too much volume...and yet have no attacks! Usually in winter. Some have observed that these conditions worsen when the days are changing from long to short or vice versa, in spring and fall. I have found this, too, and that is when I need to cool it on the wrong eating and get tough with myself to curb or control or stop the attacks. At times, easing into a 1- to 4- day total fast where I empty the gut first with the help of enemas and then take a total rest from all food (ZERO calories, use Dr. Joel Fuhrman's "Fasting and Eating for Health" book as a guide), has longer lasting benefits.
Finally, there were a number of times over the years that I suspected this condition was related to some kind of yeast or fungus. It has a number of times been set off initially by a sinus infection or head cold or simply spending too much time in a preschool where the germs felt like they were thick in the air and after which a spot under the left eye became super inflamed and set off the whole trigeminal pathway, attacks and long periods of just incredible pain. Recently I found an article online mentioning that some doctors treated these conditions with antifungals.
I found a number of times that when I did an antifungal regimen I got good results cutting down the attacks and pain. Fasting worked best of all for this. But it is again like a balancing act. Yeasts are a natural part of the human ecosystem. So when you go overboard clobbering them, things get out of whack and either they return with a vengeance or you keep teeter tottering trying to keep them in check. I tried diflucan at one point but found it was too harsh for me, made me so sick the cure was worse than the disease. Herbs like olive leaf extract and pau d'arco and thyme capsules are more friendly and work better long term for me. Oil of oregano was much too harsh by itself. Whole oregano in large amounts was okay.
May 2004: I am now Fifty (50) years old. (Date of Birth: 12-February-1954) My crisis with: Migraine Headache, Pretrigeminal Neuralgia, Cluster Headache, Coughing Headache or Trigeminal Neuralgia depending upon which physician you ask, now seems but an unfortunate memory. I now can't remember when I had my last "Head Pain" and that is not because I have a waning memory. I am now able to take Ballroom Dance lessons up to Fifteen (15) hours a week, and have been doing so for the last Two (2) years. And according to several of my dance instructors, I have exceptional energy and stamina while doing Cha Cha and Salsa dancing. This year (March & April 2004) I have already completed Four (4) foreign military parachute jumps while in Cambodia and in Thailand. Two (2) of the parachute jumps in Thailand were into the ocean. It is my hope and desire that this report helps others as it has helped me to go on to living a happy and productive life. I still continue to practice all the recommendations set forth in this report. Hey! Have a nice day!
May 2003 As of this date, I am gratified to report further progressive improvement in the Remyelinization of my Fifth Cranial Nerve. I have continued to practice all Twelve (12) recommendations listed below. At this juncture in time, I have only occasionally experienced trace residual symptoms of Trigeminal Neuralgia / Cluster Headache. I have not experienced any facial numbness or abnormalities of any kind, with fully active and normal cutaneous & subcutaneous sensory activity.
September 2002 I am very pleased to report that through extremely painful and relentless experimentation on myself since 1998, I am almost 100% pain free nearly 100% of the time, 365 days a year with infrequent slight momentary dull residual discomfort of my Trigeminal Neuralgia / Cluster Headache ordeal. My Fifth Cranial Nerve damage was extensive but limited to the Right Cranial Hemisphere of the Ophthalmic (V1) and Maxillary (V2) branches of the Trigeminal Nerve, which is well documented in my Daily Report Log. It is very unfortunate that the Health Care Professionals, Seventeen (17) at last count, could never render a diagnosis past telling me that my "Head Pain" was merely "Psychosomatic" or that: "You need to learn how to live with the pain," or that I needed Gamma Knife Surgery. Now the Medical Professionals are saying that I never had Trigeminal Neuralgia/ Cluster Headache or that my long awaited miraculous recovery was merely a case of "Spontaneous Remission," and had nothing to do with my experimental Remyelinization therapy. Read my Daily Report Log and draw your own conclusions.
Below you will read my recommendations on enabling the Trigeminal Nerve to begin the Remyelinization process of regenerating and healing the Myelin Sheath surrounding the branches of the Fifth Cranial Nerve. After years of experimenting on myself, I now feel that at least in my case, this ended up being the best course of action. I describe my own course of self-treatment here for the edification of those who might be interested. A word to the wise"
1. Fresh Fruit & Vegetable Diet: As many raw uncooked and unprocessed natural foods as possible. Sweet Peas (Spit Pea Soup) should be of special interest because when used in conjunction with MSM Crystals, as in my case, somewhere between Four (4) to Six (6) days, I experience rapid/accelerated fingernail growth. The body metabolizes more readily unprocessed foods effectively. Seafood appears not to have any adverse or impeding factors in the Remyelinization process. Refrain from eating meat products since they seem to inhibit the Remyelinization process (Fatty meats especially). Personally, I am an omnivore by nature.
2. Yeast: Any dry, Super Rich yeast will do. One (1) to Two (2) tablespoons per day. The "B" Vitamins in yeast appear to be beneficial in the Remyelinization process. Can be mixed with natural juice in a blender or capsulate your own. Mfg: Twinlab /Twin Laboratories Inc.: Super Rich Yeast Plus. 150 Motor Parkway, Suite 210, Hauppage, NY, 11788, USA Tel: 631-467-3140 Web: www.twinlab.com Available at any Health Food Store. Side Effects: None
3. MSM, (Methylsulfonylmethane): A Non-Steriodal Anti-Inflammatory (NSAIDS). 1000mg to 4000mg capsulated crystals per day. Best method 1000mg Four (4) times a day. Morning (Breakfast), Noon (Dinner/Lunch), Late Afternoon (Supper Time) and before retiring (Bed Time) in the evening. It has been my personal observation that MSM does not stay resident & active in the body for any length of time. Taking MSM Crystals Four (4) a day seems to indicate greater rapid improvement in the Remyelinization process. (Note: MSM tablets are not as effective as gelatin capsulated crystals and not recommended) Source: Health Food Stores, Farm Animal Horse Feed Stores. Purchase empty Number Single "0", Double "00", or Triple "000" Aught gelatin capsules at a Health Food Store and load the capsules on your own. Side Effects: Rapid Hair and Fingernail growth. Sometimes effective in reducing or eradicating Rheumatoid Arthritis inflammation. I have taken 26,000mg per day for over a year with no evidence of any adverse reaction.
4. Glucosamine Sulfate: 1000mg capsulated crystals per day. Capsulated crystals are recommended. Available at Health Food Stores. Crystals alone can be purchased from Farm Animal Horse Feed Stores. Purchase empty Number Single "0", Double "00", or Triple "000" Aught gelatin capsules at a Health Food Store and load the capsules on your own. Side Effects: None. I have taken 3,000mg per day for over a year with no evidence of any adverse reaction.
5. Chondroitin Sulfate: 1000mg capsulated crystals per day. Available at Health Food Stores. Crystals are available at Farm Animal Horse Feed Stores. Purchase empty Number Single "0", Double "00", or Triple "000" Aught gelatin capsules at a Health Food Store and load the capsules on your own. Side Effects: None. I have taken 3,000mg per day for over a year with no evidence of any adverse reaction.
6. Omega 3Flax Oil: 6000mg capsules per day. Mfg: Spectrum Naturals, Inc., Petaluma, CA 94952, USA. Tel: 800-995-2705, Web: www.spectrumnaturals.com Available at Health Food Stores. Side Effects: None
7. Wheat Germ Oil: One (1) tablespoon per day. Rich in Vitamin "E". Mfg: Viobin U.S.A., Monticello, IL 61856, USA. Web: www.researchprod.com Available at Health Food Stores. Side Effects: None
8. Folic Acid Powder: 1000mg-5000mg capsulated per day. Vitamin B-9. Mfg: Life Extension Foundation Buyers Club, Inc., P.O. Box 229120, Fort Lauderdale, FL 33022-9909 USA. Tel: 800-544-4440, Fax: 954-761-9199. Web: www.lef.com Purchase empty Number Single "0", Double "00", or Triple "000" Aught gelatin capsules at a Health Food Store and load the capsules on your own. Side Effects: None.
9. B-1, B-6, B-12 Pharmaceutical Injectables: Using a 3ml syringe. 2.5ml of "B" Complex and .5ml of DMSO. B-12 Injectable alone with DMSO works very well. Allow to stand combined in syringe for Four (4) to Six (6) hours before injecting into different localized fatty tissue / deep subcutaneous locations every other day. (In my case: Rt. Buttock, Rt. Flank, Rt. Side of Stomach, Lt. Side of Stomach, Lt. Flank, Lt. Buttock). Side Effects: When used in conjunction with MSM & DMSO can cause scalp and hair to appear to become oily. There is a question about "B" Complexes causing Hypervitaminosis / Sensory Nerve Impairment if administered in large doses chronically over several years. Cf.
Vitamin B1/6/12 might help This response submitted by Karin, Switzerland on 9/4/96. Author's Email: -
Peripheral neuropathy is sometimes caused by a lack of Vitamin B. Maybe your husband did not care about his intake of Vitamin B for years. Alcohol or some pills (e.g. Tegretol) may be responsible for a Vitamin B neuropathy.
Even if Vitamin B levels are normal in a blood test, this does not mean that a severe lack of Vitamin B could not have caused the neuropathy long before, and the nervous system seems to need enormous amounts of Vitamin B to recover from the damage (Remyelinization, that is filling up the gaps in the sheaths of the nerves).
I successfully treated somebody with a disabling neuropathy with injections (every 2 weeks) of a mixture of Vitamins B1, B6 & B12 (Neurorubin Streuli, Swiss trademark) for a year, and symptoms disappeared almost completely apart from a feeling of stiff ankles in the morning. Naturally one could take vitamin pills, but sometimes even the intestinal absorption of vitamins is disturbed by the lack of Vitamin B, and then one has to start with injections, but TAKE CARE TO AVOID HYPERVITAMINOSIS (pause the treatment from time to time). If the neuropathy of your husband is accompanied by pain, injections of Vitamin B can make them disappear immediately (2-3 injections/week). This is a very common problem, but most doctors rely too much lab-values of Vitamin B and hesitate to start a vitamin therapy even if the symptoms are typical.
Sensory peripheral neuropathy of vitamin B12 deficiency: a primary demyelinating disease? Steiner I, Kidron D, Soffer D, Wirguin I, Abramsky O.
Department of Neurology, Hadassah University Hospital, Jerusalem, Israel. J Neurol 1988 Jan;235(3):163-4
In five patients with peripheral neuropathy due to Vitamin B12 deficiency, electrodiagnostic studies demonstrated severe reduction in sensory nerve conduction velocities compatible with a demyelinating disorder affecting sensory nerve fibres. It is suggested that in some patients lack of Vitamin B12 may cause primary sensory demyelinating neuropathy.
Phttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2835439&dopt=AbstractMID: 2835439 [PubMed - indexed for MEDLINE]
10. Hyaluronic Acid, (HA) Hyaluronan: Restores the elasticity / plasticity to the Myelin Sheath. Cf. "Ultimate H.A. Formula" (cockscomb extract tablets) Mfg: Purity Products, 139 Haven Ave., Port Washington, NY 11050, USA. Tel: 800-769-7873, Fax: 516-767-1722. Web: www.purityproducts.com/product.asp?sku=134 Video Tape Mfg: ABC News: 02-Nov-2000 Primetime Live, "Fountain of Youth" Program Number: P001102-03 ABC News Video Services: http://abcnews.go.com/onair/2020/PRIMETIME_japanyouth_001102_feature.html 8000 E. Ronda Drive, Canton, MI 48187, USA. Tel: 800-505-6139 (It is advisable to take a maximum daily dose, short of incurring facial skin acne) In my particular case, I elected to produce my own personal supply of HA by processing poultry connective tissue in the same manner that pharmaceutical manufactures produce commercial grade HA. I accomplished this by washing, rinsing, dehydrating, grinding and the capsulation of the connective tissue. It was my desire to achieve the maximum possible strength of HA to be taken orally. I found that my "Home Processed" method produced very favorable results. Side Effects: If acne starts to occur, reduce daily dosage and use Benzyl Peroxide 5% to clear up condition. Resume use with smaller daily dosages. Cf. (Oil Absorbing) "Acne Mask" Mfg: Neutrogena Corporation, USA.
11. DMSO, (Dimethylsulfoxide): Liquid 99.9% pure. Topical Application: DMSO when directly applied cutaneously will permeate the Ophthalmic (V1) side of the forehead and scalp area. This procedure can be done once every other day. Atomized Application: Using a nasal atomizer (fine mist spray applicator) spray once up both nostrils every other day. This will be painful and only necessary if damage has occurred to the Ophthalmic (V1) and Maxillary (V2) branches of the Trigeminal Nerve. DMSO Injections: Undiluted or Unmixed injections of DMSO is not recommended and should be avoided. The stinging localized pain factor is extremely high. DMSO combined with "B" Complex injectables will allow your body to absorb and metabolize continuous large doses of "B" Complex, far more readily than would be possible with injections of "B" Complex alone. DMSO is available at Health Food Stores and Farm Animal Horse Feed Stores. Side Effects: Rapid Hair and Fingernail growth. Sometimes effective in reducing or eradicating Rheumatoid Arthritis inflammation.
12. Steam & Sauna Bath: Daily, promotes highly increased blood circulation to the head and extremities. If the Steam or Sauna precipitates / triggers a Trigeminal / Cluster Headache, suspend this therapy until a later time when the Remyelinization process has normalized most of the Fifth Cranial Nerve Branch hypersensitivity. As of this report date I have not triggered or experienced a Trigeminal / Cluster Headache taking daily Steam Baths at 135"F / 57"C and Sauna Baths at 235"F / 113"C for well over the last Three (3) years
Prednisone falls into the family of Corticosteroids known as Disease Modifying Anti-Rheumatic Drugs (DMARDS) that are used in inflammatory cutaneous & subcutaneous conditions such as Carpal Tunnel Syndrome for their anti-inflammatory properties. The chronic use of Prednisone in treating Trigeminal Neuralgia / Cluster Headache depletes the Calcium from the bone marrow and thus increasing the susceptibility to Osteoporosis.
One of the most immediate common side effects of Prednisone use is Heartburn. It is highly advisable that when taking Prednisone in the Remyelinization process, that one ingests at least Two (2) tablets of Calcium at least Four (4) times a day for every Twenty-Four (24) hour period. This is about the only precautionary defense that I am aware of in counteracting progressive Osteoporosis & Heartburn while taking Prednisone.
Prednisone has been used very effectively as a physician prescribed "Symptom Suppressor / Inhibitor" for temporary short-term pain relief in Trigeminal Neuralgia / Cluster Headache. The efficaciousness is highly reliant on the extent of Demyelinization to any of the branches of the Trigeminal Nerve. Physicians have been prescribing between 60-80mg per day, not to exceed Fourteen (14) days in any One-time interval for short-term pain relief only. In my case while taking Prednisone 20mg tablets Four (4) times a day stopped the Ophthalmic (V1) & Maxillary (V2) inflammation / damage pain entirely. As I have previously stated, Prednisone used in this application is to be strictly considered as a SYMPTOM SUPPRESSOR only! My pain relief was short lived and within a few days after terminating the Fourteen (14) day use period, the reoccurrence of my forehead / facial pain relapsed almost in its entirety. Because my pain levels were so high and relentless, I treated myself again with Prednisone on several occasions over a Six (6) month period to afford myself some pain relief and semblance of sanity, well aware that Prednisone is a major contributor of Osteoporosis, and that I was potentially setting myself up for other negative properties associated with Prednisone use.
Empirically speaking, it has been my observation that Prednisone acts as an accelerant in restoring the Myelin Sheath to some form of normalcy when used in conjunction with MSM, B-1, B-6, & B-12 Injectables. The high doses previously physician prescribed do not seem to be required to achieve the rapid & lasting restoration / rejuvenation of the Myelin Sheath. I was able to acquire very favorable results at 20mg per day, not exceeding a Fourteen (14) day period. Most often, I would discontinue usage after Seven (7) days experiencing that I had enough Prednisone in my system, and had met my tolerance level. At this point in the Remyelinization process I would not again go back on Prednisone for Three (3) to Four (4) months before repeating the cycle. My continuous use of MSM has been indefinite. The use of "B" Complex Injectables has been more or less a discretionary "On & Off" approach. It was through this cyclic procedure that I was able to determine if the Prednisone combination was producing any distinguishable lasting efficacy. Again in my case there has been a continual marked improvement, which has not diminished to this date"