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Topic: The more the merrier right? (Read 1189 times) |
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Travis1980
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The more the merrier right?
« on: Jan 8th, 2008, 12:24pm » |
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Hello Everyone,
My name is Travis and I am from Austin Texas. I was diagnosed with CH 3 years ago, but was misdiagnosed for ten years prior. I am currently a month and a half into a cycle that is officially the longest I have ever had and at the point where most of the medication I am taking has no possitive effect. They say that prolonged exposure to violence slowly strips a person of his or her humanity. I consider CH to be absolute violence and I feel myself gradually losing touch with those around me. I know that many of you have it much worse than I and your strength is absolutely inspiring. I just want to talk to people who understand and possibly offer some support myself if I can. So hello! The best to all.
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PollyPocket
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Re: The more the merrier right?
« Reply #1 on: Jan 8th, 2008, 12:33pm » |
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Hi Travis, I'm a 22 year episodic sufferer, cycle lasts 4+ months each time. I wanted to let you know that yeah, it can be a brutal assault on your head, but you'll learn some ways to cope that can and will help you live life fully when you aren't getting hit.
For those times when the ch is sucking the life outta you and you need support, we're all here to help. Read, read, read all the info here...its invaluable. Also, let us know what meds you're on.
Welcome to the board!
Jen
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Travis1980
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Re: The more the merrier right?
« Reply #2 on: Jan 8th, 2008, 12:43pm » |
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Thanks Jen!,
4 months is brutal. have your cycles gotten worse through the years. I am 27 and it seams as though the cycles are getting longer. Currently my meds are as follows:
Prednisone taper, though not really tapering anymore
Verapamil 240mg
Imitrex injections 4mg
Magnesium
Melatonin
I tried the ClusterBuster method just before the cycle started, but had to abort that strategy after one dose because I am dependant on the injections
Trav
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Brew
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Re: The more the merrier right?
« Reply #3 on: Jan 8th, 2008, 1:52pm » |
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on Jan 8th, 2008, 12:43pm, Travis1980 wrote:Thanks Jen!,
4 months is brutal. have your cycles gotten worse through the years. I am 27 and it seams as though the cycles are getting longer. Currently my meds are as follows:
Prednisone taper, though not really tapering anymore
Verapamil 240mg
Imitrex injections 4mg
Magnesium
Melatonin
I tried the ClusterBuster method just before the cycle started, but had to abort that strategy after one dose because I am dependant on the injections
Trav |
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Anybody, including your doc, ever suggest using oxygen to abort individual hits? You might consider this while detoxing before you go the buster route again.
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Travis1980
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Re: The more the merrier right?
« Reply #4 on: Jan 8th, 2008, 2:02pm » |
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My doc has suggested Oxygen, however, I am currently uninsured and I can't find anyone who will sell medical oxygen to an uninsured customer. I should be covered within the next two weeks, but hopefullly this cycle will be over at that point. Do you have any suggestions for getting the O2? Thanks so much
Travis
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Brew
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Re: The more the merrier right?
« Reply #5 on: Jan 8th, 2008, 2:06pm » |
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on Jan 8th, 2008, 2:02pm, Travis1980 wrote:My doc has suggested Oxygen, however, I am currently uninsured and I can't find anyone who will sell medical oxygen to an uninsured customer. I should be covered within the next two weeks, but hopefullly this cycle will be over at that point. Do you have any suggestions for getting the O2? Thanks so much
Travis |
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It would be illegal for a medical supply house to deny you O2 if you have a prescription from your doc and you are willing to pay for it. You do need a Rx for medical O2.
The other option is welder's O2, but you would need a special fitting onto which you would attach the regulator and mask. PM Jonny for more details. He's a savior when it comes to retrofitting welder's O2 for CH use.
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Guiseppi
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Re: The more the merrier right?
« Reply #6 on: Jan 8th, 2008, 2:32pm » |
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A little late in your cycle to talk preventatives I know, but for next cycle you may want to ask your doctor about lithium. Either by itself or in addition to the verapamil it's been a great preventative for me. By preventative I'm talking about the meds you take daily, while on cycle, to reduce the frequency and the intensity of your hits.
At 1200 mg a day it has very little physical effect on me, but blocks 90% of my headaches, 02 and imitrex jabs usually defeat the remainder.
Back when my insurance refused to cover the 02, I took my prescription to PMS....Physicians medical Supply, paid $4.50 a month to rent the tank, $13.00 each time I had an E-Tank refilled, and bought my own regulator. PMS is a nationwide company, see if there is one near you. They require the following on your prescription:
1: oxygen (obviously!!!)
2: the method of delivery...(My doc put "at 15 LPM utilizing a non re breather mask"
3: The frequency or doseage: My doc put "At the first sign of an attack, for up to 15 minutes."
That isn't exactly how I used it but PMS is a pain in the butt if you don't follow those rules. A fairly cheap route even on the bad months when I was really huffing it.
Welcome to the board, you'll never be alone again!
Guiseppi
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Travis1980
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Re: The more the merrier right?
« Reply #7 on: Jan 8th, 2008, 2:41pm » |
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Thank you guys so much! I will contact my doctor today with this info and insist on the oxygen. I will also check on the Lithium for next time. It's comforting to just have some sort of action to take instead of waiting around. Take care,
Trav
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Brew
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Re: The more the merrier right?
« Reply #8 on: Jan 8th, 2008, 2:54pm » |
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As far as frequency or dosage goes, this one has served me quite well for the last 14 years:
"As needed."
It gives me free reign as to how much I order, how often I can call them, what size tanks, all that good stuff.
My doc is a gem.
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Annette
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Re: The more the merrier right?
« Reply #9 on: Jan 8th, 2008, 5:13pm » |
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Hi and welcome
I am a supporter for my husband who has CH. His last cycle lasted 8 months so he tried pretty much everything under the sun for CH !
How much verapamil are you on ? is it 240 mg per day ? If it is it may be increased a bit more, providing that you dont get major side effects with it. Most people seem to require a higher dose. My husband was on 240mg 3 times a day.
Apart from oxygen, have you tried red bull or coffee ( strong ) at onset of an attack? They are vasoconstrictors and can work quite well aborting shadows or lower kip hits.
Ice or heat on the neck and face on your CH side can also reduce the pain during a hit.
Zyprexa tablets can also abort a hit quite well and it takes an average of 7 to 15 mins to work. It can be used alternatively with the trex injections. Just another option for you. Too much trex is not good for your heart.
Again, welcome and painfree wishes.
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Travis1980
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Re: The more the merrier right?
« Reply #10 on: Jan 8th, 2008, 5:56pm » |
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Thanks Annette!,
I'll run these ideas by my doctor. I think I read somewhere that people who are on Verapamil should not drink anything with Taurine in it. Is there any merit to that? I do tend to drink a ton of coffee during the cycle....somedays around 10-15 cups and it seems to help. I tried the water X 3 therapy and was able to have some success for a couple of days until I got what I think are horrible "Rebound" headaches that were especially bad. I have also been using this Vicks personal vaporizor/humidifyer thing with menthol/camphor oil and for some reason it knocks some of them out for me. Thanks so much for your input.
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Annette
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Re: The more the merrier right?
« Reply #11 on: Jan 8th, 2008, 7:10pm » |
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It is true that if you are on Verapamil you need to be careful about taking taurine because the two interact. They both affect the calcium channel and synergistic effect can cause problems with heart muscle contractions.
This is an extract from med-owl.com about Taurine
There have been widespread anecdotal reports of cluster headaches being aborted by the beverage Red Bull, which contains 1000 mg of taurine per 8 ounce can. More recently, a few individuals have reported improvement in their cluster headaches from taking a taurine supplement 2 or 3 times per day.
Taurine has a wide variety of effects on ion channels and ion transport (including calcium, sodium, chloride, and potassium).
Taurine is involved in circadian rythms, as are magnesium and melatonin. Under some conditions, taurine stimulates production of N-acetylserotonin and Melatonin by a factor of 40 fold and 25 fold! It is believed that taurine does this by directly stimulating the beta-adrenergenic receptors in the pineal gland.
Taurine also counteracts the effect of glutamate, reducing cell death associated with an overproduction of glutamate and disruption of calcium homeostasis. By increasing the level of Glutamic Acid Decarboxylase (GAD), an enzyme that converts glutamic acid (a stimulating amino acid/neurotransmitter that can trigger CH) into GABA, an inhibitory neurotransmitter that is not known to trigger or make worse a cluster headache.
Taurine chloramine (Tau-Cl) is a metabolized form of taurine with anti-inflammatory properties. Tau-Cl inhibits lymphocyte proliferation and lowers the production of nitric oxide, Prostaglandin E2, IL-1 beta, IL-6, IL-8 and IL-12. At low levels, Tau-Cl raises Tumor Necrosis Factor Alpha (TNF-A) slightly, but at higher levels, it inhibits TNF.
In migraine patients, the levels of taurine in the CSF are elevated; the level is lowered by treatment with divalproex sodium. It is believed that the elevated taurine was a response to pain, not a cause.
The amino acid/neurotransmitter is responsible for ITau - taurine (Tau)-activated Cl- currents.
It has been observed that taurine levels rise in the cerebrospinal fluid in response to heat stress, and suggested that taurine offers some protection against such stress.
The antinociceptive (pain-reducing) effects of Taurine and Glycine are increased by serotonin. In raphe cells, taurine, glycine, and GABA decrease serotonin production, while glutamate/NMDA increases it.
Like lithium and valproic acid, taurine increases the production of bcl-2 protein. This protein is sometimes referred to as a 'survival protein' and it is protective of nerves, mitochondria, etc. Bcl-2 synthesis takes time, and this protein must be elevated before an insult; this suggests that bcl-2 is probably not involved in Red Bull's ability to abort a cluster headaches, but could be an additional preventive effect.
Epilepsy: Low levels of Taurine and Aspartate and high levels of glutamate were 100% successful in identifying people with a particular form of epilepsy (the 3/sec. form). Some research has shown that taurine supplements reduce epilepsy, while other research indicates that taurine can increase epilepsy. Injected taurine made mice more resistant to kainin induced epilepsy, but taurine in the drinking water made them less resistant.
Low HDL may be attributed to low levels of cysteine, which may be converted to taurine under some conditions.
Taurine administration may increase production of somatostatin by the pancreas, although the stimulatory effect seems weak.
Taurine inhibits the secretion of Acetylcholine that is triggered by light, as do GABA and muscimol. Taurine, GABA, and glycine all reduce the activity of Neurokynurenines, molecules associated with stress, anxiety and certain siezures.
Taurine regulates Protein Kinase C (PKC), a metabolic pathway implicated in CH. Regulation of PKC is important in the action of Lithium and Valproic Acid.
Taurine has a beneficial effect on body weight, triglycerides, and the balance of HDL:LDL cholesterol, according to a recent study performed in Japan. Overweight or obese college students were assigned to receive either 3 grams taurine per day or a placebo, and the taurine group show a significant improvement.
CAUTIONS
Taurine should not be taken if you are currently on a prescription for Verapamil or any other calcium channel blocker. Until more is learned, it is wise to assume that Taurine may increase the action of Verapamil, which could slow the heart excessively, causing irregular heart beats and possibly a heart attack. It is also not clear if Taurine would interact with other medicines like Sodium Valproate or Lithium.
Dosage
One sufferer has reported improvement in his cluster headaches from 200 mg capsules of taurine take twice per day. As an over the counter supplement in the United States, common doses are in the range of 1-4 grams per day. Clinical studies for other conditions have used as much as 3-6 grams per day. At retail prices, the capsule form of taurine costs approximately 7 to 15 cents per gram. As a bulk supplement on the internet, taurine powder costs 5 cents per gram.
Injecting taurine or GABA into a rat's hypothalamus reduced body temperature, while aspartic acid and glutamic acid increased temperature.
In cell culture studies, taurine chloramine increased the activity of ERK/MEK metabolic pathways. Lithium and valproic acid, meds used to treat CH, are known to increase ERK/MEK activity.
Taurine is often called an amino acid, but technically is not (it lacks a carboxyl group). Unlike 'true' amino acids, taurine is not incorporated into proteins, although it does appear in a few short-chained peptides.
Ordinarily, Taurine can be synthesized in the body from pyridoxine and cysteine. It is not know how many people have genetic conditions that might lower taurine levels. Taurine levels tend to be higher in infants and children, and lower in adults. Intensive radiation or chemotherapy has been shown to lower taurine levels. Other conditions (stress, diet) may lower taurine in some people.
Other effects of Taurine include:
Reducing platelet hyperaggregability and coagulation (See Anticoagulants.
Taurine is lowered in the CSF of patients with schizophrenia.
Taurine reduces damage to the retina, lens and nerve of the eye in diabetes.
Taurine and melatonin can protect against kidney damage in the early stages of diabetes, but have little effect on later stages.
Taurine levels are unchanged in people with depression, but treatment for depression often lowers taurine levels. It is not known if the lowering effect is part of the recovery or an accidental (or toxic) side effect.
Taurine can protect against many of the toxic effects of the heavy metal cadmium. Taurine supplements increase the excretion of cadmium.
Chelation therapy plus taurine results in faster elimination of lead from the body.
Taurine can improve the congnitive performance of rats exposed to lead.
Taurine and Acetylcholine are important in the function of CO2 receptors and respiration.
Taurine Inhibits the Angiotensin II system
Taurine slows or inhibits congestive heart failure.
Taurine shows some signs of reducing anxiety. In the 'open-arms' test, mice spent more time in open areas after recieving taurine. Mice are naturally afraid of open spaces (and hawks). The anti-anxiety action of taurine was signficantly different than that of diazapam.
From my husband's personal experience though he was on verapamil 240 mg 3 times a day and he would drink up to 2 red bulls per day on an average of 2-3 times a week. He noticed no side effect and he had regular blood tests and ECGs ( electrocardiogram ) which were all normal. His neurologist was aware of this and he said to continue with caution, and to report any changes. He did that for a good 4-5 months or so without any problem.
I believe if you have a history of heart problem or experience side effects/strong reaction from verapamil and dont tolerate high dose than it is wise to not mix taurine with it.
There has been no clinical trials on humans, the warning was based on findings found on lab rats.
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Travis1980
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Re: The more the merrier right?
« Reply #12 on: Jan 8th, 2008, 10:46pm » |
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The red bull helped me tonight with a stubborn shadow. Thank you all for your help and I look forward to getting to know you better. I will be receiving my Oxygen tomorrow as a result of your input today. Thank you. I wish all a pleasant evening. Take care
Travis
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Brew
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Re: The more the merrier right?
« Reply #13 on: Jan 8th, 2008, 10:50pm » |
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on Jan 8th, 2008, 10:46pm, Travis1980 wrote:| I will be receiving my Oxygen tomorrow as a result of your input today. |
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Now we're talkin'.
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DennisM1045
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Re: The more the merrier right?
« Reply #14 on: Jan 9th, 2008, 1:35pm » |
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Welcome Travis! You've been given some great advise already and I see you are putting it to good use 
on Jan 8th, 2008, 7:10pm, Annette wrote:
It is true that if you are on Verapamil you need to be careful about taking taurine because the two interact. They both affect the calcium channel and synergistic effect can cause problems with heart muscle contractions. |
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Annette, I'm curious, what are your recomendations based on this info?
-Dennis-
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Annette
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Re: The more the merrier right?
« Reply #15 on: Jan 9th, 2008, 6:31pm » |
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Dennis, I have spoken with a cardiologist and a neurologist about this and this is what they told me : the warning was based on finding in lab rats, no study or trial been done on human, so it is more precautionary than clinically proven. Apparently we behave like rats when it comes to chemicals  . Therefore in people who is on Verapamil and dont have CH and just want to drink taurine drinks for fun, it is best to not do so. However, when it comes to CHers, its a slightly different story.
Taurine is an amino acid that is synthesized by the body and everyone has it already. If the level is too high it can cause adverse effects with heart muscle contraction, but no one knows what that level is, and most likely it would vary depends on the person. It had been found that CHers during cycle tend to have a lower taurine level. Therefore it is probably safe for Chers in cycle to take in some extra taurine . Furthermore, if you compare the possible side effects of mixing taurine vs other heavy duty meds used for CH such as triptans, its still relatively low risk.
Both specialists told me that as long as one is healthy, fit, has no heart problem, can tolerate Verapamil in relatively high dose without side effects its OK drink taurine drinks up to 2 cans a day while on Verap and still be safe. They recommended regular blood tests and ECG ( cardiogram ) which you do when on verapamil anyway, and to watch out for any side effects such as chest pain, palpitation, irregular heart beats etc. If you develop those, stop the drinks ( even coffee ) and report to your docs.
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DennisM1045
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Re: The more the merrier right?
« Reply #16 on: Jan 9th, 2008, 7:56pm » |
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Thanks for following up Annette. Very useful info as usual
If you post the info from med-owl you might want to append this extra info. The med-owl info alone left me confused and wondering about my own treatment plan which includes both Verapamil and Energy Drinks.
Thanks again...
edited to add: Sorry for hijacking your thread Travis
-Dennis-
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| « Last Edit: Jan 9th, 2008, 7:57pm by DennisM1045 » |
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tessistired
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Re: The more the merrier right?
« Reply #17 on: Jan 10th, 2008, 9:25am » |
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Good Morning Travis and let me be the next to welcome you to this most wonderful CLUSTERHEAD FAMILY!!
I am very glad to hear of you getting oxygen. It took me forever to get mine but it is a God send and works really well for me aborting most of my hits and I pray it works just as well if not better for you. I am a clusterhead for about 7 yrs now....chronic for about 3 yrs and episodic b4 that.
Stick around and learn lots which you certainly will from everyone here. You are already putting it to good use.
I wish you the best and PAIN FREE DAYS AND NIGHTS ALWAYS!!
Tess
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Travis1980
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Re: The more the merrier right?
« Reply #18 on: Jan 10th, 2008, 10:30pm » |
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Thanks Tess,
I had a little trouble finding a 15 LPM regulator, but I should be good to go for tomorrow. I am so happy that I won't be dishing out $100 every time I get a hit. I'd pay anything, but no one wants to go broke. Everyone has been so helpfull. I had my first PF day in 6 weeks today and it was amazing. Best,
Travis
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tessistired
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Re: The more the merrier right?
« Reply #19 on: Jan 11th, 2008, 10:12am » |
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Hey Travis!
How awesome is that!!!...Im so glad you got a break from the beast...even if it is for a day. I'm praying for you as I do for everyone else here and that your pain free days last longer than one day! It is a battle but we fight it together so dont ever give up!!
Keep us posted and have a great day!!
Many Blessings to you and yours!!
Tess
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