CH with TN and A Typical Face Pain

[maddieTN]

Hello fellow CH's  I have been researching Bromo,a derivative of LSD for CH, but it is not being tested for Trigeminal Neuralgia or A typical face pain.  All three of which I have. One will set off the other, etc..   Does anyone else have accompanying syndromes with their CH and if so is busting working for you?  I have been looking for serious relief for 7 years. 

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[Hipshot]

Hi Maddie and welcome to the board.

I'm sorry I can't help you as I have CCH (only  ;D)  and get good relief from mushrooms and oxygen.

Do you use oxygen? It is a must.

Others will help you if they can...hang in there.

Dan

...as far as I know

Bromo or BOL isn't being tested ...period.

[met la]

neurontin helped me alot with the tri nerve pain , but its weird until you get to the right dose , i haven t had this for a long time so i am prob not the best person to ask though,but for me the tri nerve pains last a long time , 2-3 hrs so it s probably not tr neuralgia , as far as my condition ,  but i have had tri nerve pain without eyeball being stabbed to death , i just view it as a 10% cluster ha , or one that really never got started fully

[met la]

point was if you get rid of the ch tri neur should be not too hard to deal with, or at least a lot easier

[maddieTN]

Thanks for your replys they are helpful. I am no longer on the regular meds for TN I am on topomax and propananol and cymbalta which brings the pain level down from a 10 to a 5 or 4 most days.  CH they [Doc] are treating as a side effect of the TN O2 works once and a while, best remedy found so far is an hour of sleep and wake up to dull ache that can be delt with. 

Applying for SSI now episodes are to often to hold a job. So I am looking for alt. anywhere I can and weighing the odds.  :-/

[Pixie-elf]

I've been diagnosed with both, CCH and TN.

For me, it seems that busting has helped the TN too. I don't know if it works like this for others though... I felt the Seeds and Shrooms doing things along both trigeminal nerves. My body is fucked up, and they honestly have no clue which causes which. Neuralgia causing CH, or vice versa? They've told me that.

Wish I could be of more help. Zanaflex helped with the neuralgia pain a good deal.

Mystina

[Bonkers]

You might try Lyrica for the neuralgia pain. Works for lots of different types of nerve pain. I take it for peripheral neuropathy from degenerative disk disease.

[maddieTN]

I was on Lyrica the first year it came out.  Went up to 600 mg.  Still had major break through pain that put me on the floor.  I do have a a level of tolerance, for instance, I walked around for 3 months with an infected appendacitcea and did not know it till I fell pain in my side driving.

Be careful with Lyrica, high doses may put leasions on your skin that look like cancer moles,  mine disappeared when I stoped taking the med.

[les genser]

maddie;

If you can find an illustration of a hypothalamus you will notice that the trigeminal nerve passes directly through the central tuberal region of the hypothalamus. The eye, through the optic nerve, is also directly coupled to the hypothalamus through the suprachiasmatic nucleus.

Forget the big words, my point is you do not have separate conditions; the TG neuralgia etc. are part and parcel and secondary to the CH. It all becomes one large feedback loop and any part of it can trigger any other part.

Treating the CH as a side effect of the neuralgia is a mistake.

Busting with hallucinogens, or using licorice root will remove the hypothalamus from the loop. The TG or other neurogenic pain is, sadly, much harder to get rid of. Busting or LR should greatly reduce the frequency and severity of hypothalamically generated CH and make the TG pain far easier to deal with. Without the actual headaches, the TG triggers are much easier to identify. Nerve complexes that become chronic pain loops are difficult to deal with, and virtually impossible for pharmaceuticals to touch. Everyone knows I dislike pharmaceuticals, but in this case statistics and research bear me out. Apparently, your experience does as well. Drugs will not solve your problem, and in fact are in all likelihood complicating it through side effect and rebound.

Have you tried acupuncture? Trigger point acupuncture can be highly effective in releasing chronically held tension in the shoulder and neck muscles often affected and/or causative in the CH/TG merrygoround. It put me in remission for two years. Massage is very helpful, as are other lifestyle/ behavior changes you can make to reduce your stress level and eliminate triggers.

I know its hard to think of these things when all you really want to do is drop kick your head a hundred yards, but the clusters are something you can treat first and that makes the TG pain much more manageable.

At least that has been my experience, and I've been carrying pretty much the same syndrome you describe for 37 years.

[met la]

do you ever feel like you were punched in the eye between cycles of headaches , this is like the third time i noticed it , each time it coincided with a break in the headaches , followed by some really bad ones again

not really painfull , just feels like your eye has been pounded out of your face ,and is wounded,  like rocky after apollo fight