Autoimmune clusters

[missray136bitters@yahoo.ca]

I can use some advice on how to handle these symptoms. I was diagnosed with multiple allergies when I was a kid which isn't unusual, but then I had chronic migraine by the time I was 10 displayed symptoms of fibromyalgia by the time I was 12 diagnosed with fibromyalgia by the time I was 18 then diagnosed with narcolepsy type 2, 4 years ago but now I am starting to have "episodes." When ever I get stressed out I get really weak, to the point I cant even move. It's really scary, I cant move. Im awake but I can't really respond to whats happening around me. It lasts about 5 minutes to 30 minutes. I went from having this happen once every two weeks to once every two days so I scared it's getting away from me and I don't know how to get a handle on it. Does anyone else have autoimmune clusters or narcolepsy? Please let me know what you think.

[Heavenly_Blue]

Hi missray,

Narcolepsy may actually result from autoimmune dysfunction as well. Your immune system has likely attacked the population of neurons that produce the neuropeptide orexin. This peptide helps regulate wakefulness and energy expenditure. Without it, you can experience narcolepsy.

Get yourself to a primary care physician ASAP. They can refer you to a specialist who will likely prescribe Humira. This medication is an antibody that targets TNF-a and is very effective at mitigating the symptoms of many autoimmune disorders. 

[missray136bitters@yahoo.ca]

Thank you :), That definitely helps, they have me on 800mg of modafinil a day and it still isn't working. I went to see my doctor who thinks they my be seizures, but I don't think their seizures.He's sending me for an EEG to look further into that. He is also sending my back the the sleep clinic for a second sleep study as well though. The first time I went I was one sleep patterns shy of type 1 so they diagnosed me as type 2. Im also keep getting the butterfly rash on my face, but I think that's an autoimmune thing, I hear its common with fibromyalgia and lupus..

Do you suffer from a cluster aswell?

[Heavenly_Blue]

If it is an autoimmune problem, modafinil will treat symptoms, but not the cause. If you have significant demyelination, you can have a peculiar eeg and experience seizures. An antiepileptic still won't treat the underlying cause. 

While you deal with stubborn doctors and await a good prescription, I suggest getting a curcumin supplement to hold you over. Curcumin is the active ingredient in turmeric root and is a potent inhibitor of inflammation. Here is a cheap one.

https://www.amazon.com/BulkSupplements-Curcumin-Natural-Turmeric-Extract/dp/B00GHY368G/ref=sr_1_3_a_it?ie=UTF8&qid=1519264486&sr=8-3&keywords=curcumin+bulk+supplements&dpID=41DXUThA78L&preST=_SX300_QL70_&dpSrc=srch

I do not work for this company.

Also, I suggest getting little gelcaps to put it in. Use a straw to dispense the powder into the caps. 

https://www.amazon.com/Empty-Gelatin-Capsules-Size-1000/dp/B000ACUJRW/ref=sr_1_1_a_it?ie=UTF8&qid=1519265050&sr=8-1&keywords=gel+caps

Good luck!

[Heavenly_Blue]

And yes, I suffer from cluster headaches. I am currently treating mine with some success, hopefully will be out of this cycle within the week. 

[Ricardo]

Some of the more potent TNF inhibitors are the drugs we use for clusters.  All the classical hallucinogens are thought to super potently inhibit TNF.  Caffeine, cannabis and ketamine inhibit it as well.  (cannabis and ketamine have also gotten labeled as "autoimmune modulators" because they tend to increase or decrease the immune response depending on what your body needs.) 

http://jpet.aspetjournals.org/content/jpet/327/2/316.full.pdf

 

-Ricardo

[Heavenly_Blue]

19 hours ago, Ricardo said:

Some of the more potent TNF inhibitors are the drugs we use for clusters.  All the classical hallucinogens are thought to super potently inhibit TNF.  Caffeine, cannabis and ketamine inhibit it as well.  (cannabis and ketamine have also gotten labeled as "autoimmune modulators" because they tend to increase or decrease the immune response depending on what your body needs.) 

http://jpet.aspetjournals.org/content/jpet/327/2/316.full.pdf

 

-Ricardo

Ketamine and a cannabis habit might be a bit extreme to treat something with better, psychologically safer alternatives. I know folks with chrons and psoriasis that do really well on humira. Not devoid of its own risks, but everything comes with something undesirable.

[Ricardo]

Actually the way I found out that hallucinogens lower TNF so well is from talking to a Chron's patient that was not getting enough relief from pharmaceuticals.  He swore LSD was the thing that worked best for him.  My point really though, was that there are substances that may possibly work on both disorders making it so you can take less drugs altogether.  I have been on prescription ketamine for clusters for close to 7 years now and have found it to be extremely helpful.   It has also shown a lot of promise for fibromyalgia. (Not to mention that I would bet that the stimulant effect that comes with the low doses used for cluster would work very well for narcolepsy.)  And I'll take a cannabis habit over most daily pharmaceuticals anytime.   Humira in particular comes with some pretty serious warnings in regards to lowering your resistance to fighting infections.

-Ricardo

[Heavenly_Blue]

I figured out 5ht2a agonists lower tnf alpha by searching on pubmed

https://www.ncbi.nlm.nih.gov/pubmed/24098382

There is still not enough evidence to support their use for autoimmune conditions. Yes, I am aware of the risk of infection with humira. Do you know what its like to take a dump with no colon? My friend with chrons does. And trust me, he's not snorting K or dropping acid to treat it. I suggested curcumin earlier, which also is a strong anti inflammatory agent because it has decent therapeutic potential, but little risk for side effects, cognitive or physical. 

Cluster headaches are not currently characterized as an autoimmune disorder, which OP seems to have given their symptoms. They must be very painful regardless, but likely require a different method of treatment than clusters. 

Bottom line, a licensed physician should still be the first opinion we consider. They can run expensive tests and have years of experience treating folks with similar symptoms. You just have to find a doctor you trust, just like you need to find a mechanic that you trust to fix your car.

[Ricardo]

10 hours ago, Heavenly_Blue said:

I figured out 5ht2a agonists lower tnf alpha by searching on pubmed

https://www.ncbi.nlm.nih.gov/pubmed/24098382. 

Truthfully I found the info the same way.  I heard an anecdotal report that I did not believe it so I researched to try and find out if I was correct.  Turns out I was not.  You can downplay the results if you want, but I have yet to find another "superpotent TNF inhibitor"  

 

Quote

"There is still not enough evidence to support their use for autoimmune conditions. Yes, I am aware of the risk of infection with humira. Do you know what its like to take a dump with no colon? My friend with chrons does. And trust me, he's not snorting K or dropping acid to treat it. I suggested curcumin earlier, which also is a strong anti inflammatory agent because it has decent therapeutic potential, but little risk for side effects, cognitive or physical."

 

You sound really pissed here.  I am just giving people more information so they can make an informed decision for themselves.   Nothing I said was untrue.  Most people on this site seem grateful for more information, not less.  

You also seem like you have seriously fallen prey to drug war propaganda.  If you are really going to say that you should try a pharmaceutical that might increase your chance of a life threatening infection instead of cannabis I'm guessing you don't know enough about cannabis.   And if you take a drug for a condition it is not called "a habit".  It's called taking your meds.

And no I don't know what it is like to have Chron's.  Either do you.  Your friend does and my friend does.  What's your point?

(And I would advise Turmeric over curcumin any day. 1 gram a day, freshly chewed up)

Quote

 

Bottom line, a licensed physician should still be the first opinion we consider. They can run expensive tests and have years of experience treating folks with similar symptoms. You just have to find a doctor you trust, just like you need to find a mechanic that you trust to fix your car.

I agree that you should get an opinion, but remember that it is just an opinion.  Tests and more info is great but quite a few of us have found that when they take the meds that most doctors prescribe they are worse off then before.   Most times I have gotten more accurate from members of this site than I have from doctors.   Remember that you are on a Cluster headache page that most people come to because doctors know almost next to nothing about their condition.  In fact the only way I was able to find a good neuro was through this site and I have been dealing with this since 1998.

My bet is that we will accomplish more by working together and sharing info instead of arguing but I think that is going to be up to you.  

-Ricardo

Edited March 5, 2018 by Ricardo

[Heavenly_Blue]

Someone comes here, says they haven't been to a doctor, might not even have typical clusters, and your first advice is to take ketamine and cannabis because you theorize it might work? I use ketamine at work for animal euthanasia and surgeries, and have seen vet techs get hooked on the stuff, stealing it from the lab, lying about how much they use. I'll catch them passed out limp in the break room from time to time. I believe anything can have a medical use, but I'm very much into harm reduction, not anti drug at all. If OP came here and said "I have been to a doc, prescribed this, diagnosed with this, none of it works, please help." My reaction would be totally different. 

Trust me, I hate the establishment more than anyone. And I'm not angry at all, I think you have provided valuable insight and accurate info. My conservatism actually comes from experience, not propaganda. I have seen all manner of substance abuse ruin lives, hallucinogens and cannabis included. I have also seen them save lives.

Edited March 5, 2018 by Heavenly_Blue

[Ricardo]

The reason that I put that out there is not to convince someone to try something on my theory, it is to remind people that there are more options than just the ones listed and that a couple of them a doctor can prescribe for their clusters.   One neuro that prescribes both Ketamine and cannabis for migraine and clusters is actually a board member here at Clusterbusters.  The experiences that he has reported from his patients do not really match the experiences you have seen in your office.  Very little abuse and very few problems with it.  Myself, over the past 7 years I have only gone down in frequency and amount.  I was taking twice as much but my headaches got better and on my own I decided to cut it in half.  I have also talked to numerous migraine and cluster headache sufferers who have also been taking it for years with no problems.   

And yet people seem hesitant to admit that they have it prescribed.  Probably because every time it gets brought up people talk about it like it's some big debauchery thing instead of a legitimate medication for clusters.   Before I gave a talk on Ketamine at the CB conference two years ago I thought I was the only one on it.  Then I gave my talk and person after person came up to me to whisper that they too had it prescribed and that it was seriously helpful, sometimes lifesaving.   But that they were going to tell no one but me.

When we talk about substances as a "habit" or as "snorting k" it deligitamizes the very real info and experiences that have shown these things to be medicine.   It also gets people to not want to mention the medicine for fear of judgment, making it so accurate info on the subject is hard to find. 

That's why it irks me when people talk about ketamine abusers and chronic pain patents as if they are the same group of people.  Both have issues that they would love to run from but many of the chronic pain patients find ketamine has at least somewhat made their situation better.  Not because they are bombed all the time but because the situation that they wanted to run from is now manageable.  From what I have seen that's when the last thing people want to do is dissociate, instead they want quite the opposite--to get back to their lives.  So far, the experiences of ketamine users for headache disorders have backed this up.

To me the way to go is to put out all the options so people can decide for themselves.  Truthfully I am not against pharmaceuticals.  I think all drugs have their place but that with the huge differences in people and situations we need all options listed as often as possible.

As far as substance abuse (especially cannabis) ruining lives... Are you really sure that's what's going on?  Most research I have read points to the idea that substance abuse is a symptom of a bigger problem in someone's life, not the actual problem.

 

-Ricardo