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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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heapsreal

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ok, the internet pharmacy i get my antivirals from sometimes throws in samples of V. I remember dr jay goldstein who was big into neuro drugs etc and said it can help some with brain fog but careful with people who have POTS which isnt me. I think it was certain parts of the brain have poor circulation and could be causing headaches and brain fog due to poor circulation. Now this go's against a few theories like trying to reduce nitric oxide as V increases nitric oxide which causes vasodilation of the male brain above the shoulders as well as below the waist, lol. Maybe not a long term treatment but i also believe some use blood pressure medications for the same thing, i think goldstein also had some bp meds he also used for this as well as angina medication glycerol trinitrate which is also a vasodilator.

Heres an interesting link on increasing nitric oxide in cfs
http://www.zimbio.com/Chronic+Fatig.../69/Engineering+Perspective+CFS+Dave+Whitlock

Now for the last 10 days of had a strange sort of brain fog which varies between fog and a headache. I have been trying different over the counter pain meds, increasing my dose of lyrica etc but no luck. I feel my personality changing becoming more withdrawn, antisocial and intolerent to kids carrying on etc and concentration problems getting worse. Now amongst the fog i managed to pull out this info from the cob webs of my brain, u know the light bulb flashed above my head, i should try those V samples, nothing to lose but my headache and gain a twinkle in my eye:D, lol. So i took a 1/4 of a V which is 25mg dose. Within an hour the brain fog has lifted, i actually feel i can think clearer and my personality has come back. And for all the guys out there if this works for u and u have to go to work then maybe invest in some hollywood tape to avoid any strange stares, lol. nimodipine which is a calcium channel blocker which is also used to lower blood pressue and causes vasodilation is another drug that goldstein has had success with.

I would be interested to here of others experience with V or other bp meds helping with brain fog and cognitive issues etc

cheers!!!
 

heapsreal

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5. Have you any more information about Nimodipine & Brain Circulation?

Dr Mason Brown never puts any pressure on GPs to prescribe nimodipine on the NHS. it is just not fair if they have a difficult local situation. However GPs, who have seen the improvement in earlier patients, are now increasingly insisting on prescribing it on the NHS. There is no greater advocate than the convert, especially once they realise the dangers of cerebral anoxia and toxicity in CFS / ME.

Dr Teitelbaum is believed to have new double-blind trial information pending, but except for the over one hundred patients that nimodipine has help restore to quality of life with Dr Mason Brown's use of nimodipine over seven years, there is the following:

Re Nimodipine references from Dr Goldstein's Book: Betrayal by the Brain.

Goldstein JA, Mena I (1994) Pre- and post-nimodipine brain SPECT in patients with chronic fatigue syndrome. Presented at American Association for CFS Research Conference, Fort Lauderdale, Florida, Oct 8.

Goldstein JA, Mena I, Yunus MB. (1993) Regional cerebral blood flow by SPECT in CFS with and without firbromyalgia syndrome. Arth Rheum 39(9/suppl.): 205

Goldstein JA
Brain SPECT scans in Chronic Fatigue Syndrome were done with Ismael Mena, MD, Professor of Radiology, University of California, Los Angeles School of Medicine. Temporal lobe hypoperfusion was found in this population. SPECT scans have been performed before and after exercise, treatment, and activation by doing calculations.

Post-exercise SPECT and post-treatment scans show worsening of baseline blood flow impairment. 5) PET Scans in Chronic Fatigue Syndrome were performed with Monte Buchsbaum, MD, and Steven Lottenberg, MD, Department of Psychiatry, University of California, Irvine, School of Medicine. This paper was presented at the American Psychiatric Association Meeting in New Orleans, May, 1991.

Could Low Levels of Cerebrospinal Fluid Endothelin Explain the Vasoconstrictive Response to Nimodipine seen in Pre- and Post-Treatment Brain SPECT of CFS/FMS Patients? Poster presented at 3rd World Congress on Myofascial Pain and Fibromyalgia, University of Texas Health Science Center, San Antonio, Texas, July 30, 1995.

Pazzaglia PJ, George MS, Post RM, Rubinow DR, Davis CL. (1995) Nimodipine increases CSF (cerebro-spinal fluid) somatostatin in affectively ill patients. Neuropsychopharacol 13: 75-83.

Tettenborn D, Fierus M, (1993) Clinical aspects of nimodipine treatment in brain ischaemia. In Scriabine A, Janis RA, Triggle DJ (Eds), Drugs in Development (vol 2: Ca 2+ Antagonists in the CNS, pp. 473-482). Brandford, Connecticut: Neva Press.

Extracted from BETRAYAL BY THE BRAIN: THE NEUROLOGICAL BASIS OF CHRONIC FATIGUE SYNDROME, FIBROMYALGIA SYNDROME AND RELATED NEURAL NETWORK DISORDERSBETRAYAL BY THE BRAIN: THE NEUROLOGICAL BASIS OF CHRONIC FATIGUE SYNDROME, FIBROMYALGIA SYNDROME, AND RELATED NEURAL NETWORK DISORDERSby Dr. Jay A Goldstein
(summarized by Dr. J. A Sherkey; full text available from The Haworth Medical Press 1-800-3 HAWORTH. Reprinted on the CFS Society of Victoria's web site with the kind permission from Dr Sherkey.)

People who have been ill for years can feel normal in a few minutes after taking the right medication. Patients whose symptoms do not wax and wane may have structural lesions and/or genetic dysfunctions that are not amenable to rapid remediation. These patients tend to respond poorly to the medications on the neurosomatic treatment protocol but may improve with antidepressants. The most effective medications are nimodipine, gabapentin, oxytocin, baclofen and intravenous lidocaine. A central noradrenergic deficit appears likely, perhaps accompanied by a neuropeptide Y and an oxytocin deficiency. Some of the medications do not cross the blood-brain barrier yet are still very effective. It is poorly appreciated by many clinicians how profoundly the brain can be modulated by molecules acting at the level of peripheral nerves, or autonomic ganglia. Acupuncture also has this mode of action. Most neurosomatic patients can remarkedly improved in a short time with medications that have a good risk-benefit ratio. Proof of Disability for Insurance: 1)SPECT scan - has to be done on a 'brain dedicated SPECTscanner


6. What if I have a constant headache before I start the nimodipine?

ME is a condition with poor circulation to the brain. This, especially if associated with dehydration can cause chronic headache, that sometimes can be severe. Also there is a varying degree of inflammation due to the toxic substances produced by nerve cells and trapped in the brain, and these can cause headaches. Also any chronic stress or negative emotions, such as frustration, resentment, and especially emotions like anger, can increase headaches and pain.

Read the extended protocol on nimodipine in your ME Action Pack 1 or sent with your prescription. You have to become your own expert in dosage as each individual is different.

Individuals with recurrent or chronic severe headaches have all the greater need for nimodipine, but if they are severely ill or have been untreated for a long time, they may need to start with a smaller dose than usual, in very few people, this may be as low a dose as an eighth or a sixteenth every third day. These are the exceptions, because the usual NHS dose of nimodipine for patients with subarachnoid haemorrhage is eight tablets a day.

If you are suffering from recurrent or chronic severe headaches it is necessary to take quite large doses of Evening Primrose Oil (see related questions) and the Ginkgo biloba. It will also be necessary to take a probiotic. The one Dr Mason Brown recommends is Prime Directive.

Remember to drink eight glasses of water daily to flush out the released toxins.


7: Will nimodipine lower the blood pressure?

No. Not in the doses used in the ME protocol. The doses of nimodipine used in treating ME are tiny, starting at a quarter tablet or less, compared to the dose, eight tablets a day, used to treat someone with a subarachnoid haemorrhage. Look at it this way, it is the difference between having a few sips of wine as compared to drinking the whole bottle.

It is the correct use of dosage for the individual that has taken the seven years work, and those individuals who have had ME Action Pack 1, or been at ME Workshop 1 are given the full dosage protocol, which is constantly updated.

Remember that in ME there is neurally mediated hypotension with reduced circulation to the brain. This reduced brain circulation and lower blood pressure is worse in the morning, when your cortisol level will also be lower. The nimodipine also helps your pituitary circulation as well and that releases the trigger hormones for your body glands, including the adrenals, the thyroid, and sex glands.

Until the backlog of neurotoxins have been removed from the brain and your brain circulation is restored to normal, proper recovery cannot begin.

Please remember that this is only the beginning, the next stages are the whole body circulation, the removal of toxins from the body, returning the digestive tract to normal, replacing all the missing nutrients, including l-glutamine, and finally getting the physical fitness back, so that you can have quality of life with health, stamina, and balance in all the things you do.


8: Can you be allergic to nimodipine?

Answer: You can be allergic to anything. However, in my experience, over the last seven years there has only been one person that was allergic to nimodipine and they had several allergies, including being allergic to all the calcium antagonists. If an individual has a known allergy to calcium antagonists, they should not take nimodipine. There are other brain circulation alternatives that are also being tried, but nimodipine has stood the test of time.

9: What are the side effects of nimodipine?

Answer: In the very small dosages used in the nimodipine protocol for ME the side effects are not usually due to the nimodipine, but due to the release of the neurotoxins. Neurotoxins are the waste products produced by brain cells that, in someone with ME, have been trapped in the brain due to the poor circulation. The side effects of the neurotoxins being released are usually tiredness, nausea, a feeling of facial flushing, or temporary increased heart rate.

Please remember that a very common cause of increased heart rate in CFS / ME is excess and inappropriate use of the Fight Flight response due to improper pacing or due to temporary viral damage to heart muscle.

If an individual has been severely ill or bed ridden for a long time, then the trapped neurotoxins will be greater and these patients should follow the sections in the protocol on starting with smaller doses, for example a sixteenth of a tablet every three days to slow the neurotoxin release.

The work of nimodipine is at least fourfold: to release the backlog of neurotoxins and waste products from the brain, to open up the brain circulation, to allow in oxygen and nutrients to enter and to help cognitions, pineal, hypothalamic, and pituitary function. Nimodipine can later be used, rather like an angina patient uses their spray, or an asthmatic their inhaler.

To begin with, the effect of nimodipine is rather like a car driver using jump leads to start a car with a flat battery. Later on the brain without its toxic load and now with enough oxygen and nutrients, starts to function spontaneously again, and at this point the dose of nimodipine may become too much and be able to be reduced. This is usually shown by facial flushing or by a headache. The patient starts the following day on a quarter tablet less of the nimodipine.

Later there will be further reductions in dose until it is only used intermittently. For example, Dr Mason Brown does not need it on holiday, but may need some if working a twelve-hour day. That was not helped by the fact that he did what he hopes you will avoid, namely after partly recovering, struggling to keep working part time for eight years in the NHS under cover of large doses of prescribed medication, which hid headaches and muscle pains, so that damage was caused. It took him eight years to relearn to write with his right hand. Please do not do that to yourselves. Learn from his mistakes.

Although the above doesnt relate directly to V, it does mention alot about poor brain perfusion and the use of nimodipine which helps improve brain circulation similar to V and probably other meds out there that can also help. This improved brain circulation as they say can help get rid of toxic waste products from hypoxia, which slowly damages the brain.

cheers!!!
 

Enid

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Fascinating information heapsreal and glad to hear of your own "discoveries" - all making sense. Going to investigate for myself. Leave the rest to other members who may have tried along your lines.
 
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My memory is sketchy on this.

Doctor sometimes prescribes nitroglycerin, which might have similar dilating effects viagra? You might want to check it out as an alternative. It probably is less expensive.

I suspect I have sensitivites to nitric oxide. I had to quit the nitroglycerin because of spaciness. But did have good energy for awhile.

I think the nitric oxide might have some studies that shows it kills viruses. You may want to check it out.
 

heapsreal

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yes have read goldstein using it, but he used very tiny doses, large doses causes headaches and bp to drop. he use to cut tablets into tiny pieces.
 

heapsreal

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Hi heaps

There are quite a few threads on nimodipine - see for example:

http://forums.phoenixrising.me/showthread.php?5886-Nimodipine&highlight=nimodipine

nd do a search.

I had a subarachnoid haemorrhage a few years ago, and was given it for several weeks. I felt much better, but have tried it at a lower dose since without any luck. I might try to persuade someone to give me the higher dose again.

Jenny
let us know how u go, hopefully feel better on larger dose.

cheers!!!