How Do You all Stay Happy People??

[Axel_B]

'There is light at the end of the tunnel....................       

[Juss]

Even I have limitations (with Orthomolecular approaches). It’s called copious amounts of Lithium ER, never use Lithium or else you will be up all night pissing. And, the extend tends to prevent renal failure, which seldom occurs unless your Psych NP doesn’t understand how to run a Lithium Clinic. And Lamotrigine (Lamictal). The latter is an anti epileptic that they discovered worked far better as an antidepressant. 
 

I know first hand and advise everyone to stay away from MAOI, SSRI, SSNRI, and Tricyclics. Also stay away from the novel Atypical that aren’t really atypical (Abilify and Latuda). I won’t drag it out, all are proven to cause chronic, deep depression in any type of Bipolar spectrum. The evidence is starting to support it for Clinical Depression.

If you cut, slash your wrists, mutilate, any type of self-harm, surprisingly “Dopamax” Toprimate (Topamax) works quite well. I admit to serious self-harm by suicide and it stoped overnight. I have known cutters and those when shaving that cut, they stopped overnight. I thought I would mention in case anyone suffers in silence as they don’t have to.

If you recognize Topamax, if patient, and you know what to take to counter the cognitive deficits, it works damn well for headaches. AGAIN, it took me two years, however, and a TON of tinkering. I also made drastic changes to my diet and nutrients.

Finally, don't feel defeated and find a good therapist. Nothing fancy, CBT, Rational Emotive, Interpersonal, Rogerian, all help. It comes down to what will help you.

I won't see a therapist that is dogmatic, stuck to one approach. My therapist, for example, employs DBT, ISPRT, Psychodynamic, Interpersonal, CBT, ACT, Transference, and Schema. My point, if they say “ most only need a few months, I use therapy X” RUN LIKE HELL. They most likely have some fancy office and charge $200 an hour, I know those types. The best ones are D.A.P.A. and in their 60s, as they trained in the 70s (appears the golden era), and take cash/work under the table. 

You can try EMDR, it is all the rage, if rich enough. It was designed for Trauma victims, and I know a few that practice and use it to help with Migraines, Depression, hell they are experimenting on about everything. It's a much quicker approach if you hate talking. Around here, plan on forking over $250 for a 1/2 hour, no insurance. 

If you don't risk psychosis and hallucinations, I can't believe that I am saying this, get a weed card, put on some Bob Marley toke on a number and drown it out. Hell, I wish. I wig out and can’t. That is my reason. I don’t advise everyday, there is evidence of creating depression from that. But there is nothing wrong with a fatty once in awhile. You are in a state that allows that, as am I, well 3/8 of an O. 
 

I don’t suggest a good bottle of Red. That is the worst idea, and I hope that this helps.

 

[Juss]

If all else fails I won’t deny the Hydroxyzine comatose. It works every time. It’s a pet hypothesis, if your body can’t take the pain you have three options: shut down/black out, abort, or suffer. If you abort you get rebound headaches or rebound pain, only worse and some turn chronic. If you suffer, oh hell no. Thus, I knock my ass out.  

[Bejeeber]

4 hours ago, Juss said:

If you abort you get rebound headaches or rebound pain, only worse and some turn chronic.

While I know rebounds to be a very real issue, for my personal case of ECH, I've found a different perspective on this - I've experienced a couple not-busted cycles where I've aborted every single attack that broke through the preventative efforts (this could be like 6 attacks a day in high cycle), and I rode the entire 2.5 months duration out that way.

Made it to the end, cycle stopped. Very luckily had long remissions afterwards. No particular threat (YET anyway) of going chronic. So for me, "abort 'em all!" has so far proven to be an effective and worthwhile strategy, in the absence of a full on busting-prevents-the-cycle-entirely success.

[Juss]

Agree, and it is case-by-case, and why I said some. In my case, if I do much as start taking the famous 500mg of APAP and 800mg Ibuprofen protocol that can set the path to chronic. Keterolac definitely does, add DHE and I am screwed. Honestly, can’t speak for Tripitans (automatic serotonin syndrome and allergic reaction).

The same thing happens with the analgesics for chronic pain, on rare occasions I will take one, but not to the extent that I used to. I won't go there. 

Even some of the prophylactic I question, but I am most likely a freak of nature. It doesn't seem odd that when I fired my headache specialist, quite all but a Calcium Channel, and doctored myself, that in due time things got drastically better.

 

 

[BoscoPiko]

I don't take anything anymore aside from the verapamil and D3 reg. I use to use a nasal triptan but I do believe that it kept me in cycle this last round much longer. Shadowing is not a warning for me as I'm always shadowing (every day even out of cycle). It's just a norm for me to have a good deal of discomfort on the rt temple but I'll take it over the thunder. My warnings are the random spikes (same spikes as I experience with a CH just not in every 2 to 3 second succession). I made the mistake of thinking that I was going to go full blown this last time and took the spray, boy was that a mistake...my normal 1 to 1 and 1/2 month cycle turned into 3 and a few.. The D3 reg really has helped with the intensity and while it still hurts like an MF I can at least stop pacing and rocking back and forth..

[Juss]

While pertinent to Migraine prophylaxis it gets you in the ballpark. And it includes nutraceutical and pharmaceutical approaches. Everyone writes it off, hell I did, 3x, then I researched, tinkered, and dialed in for two years, at high doses, topiramate is a huge help (drink a shitton of water or you will piss stones).  

The metabolic face of migraine

https://orbi.uliege.be/bitstream/2268/247255/1/Gross et al Metabolic face of migraine-Nat Rev Neurol 2019.pdf

Open-label prospective experience of supplementation with a fixed combination of Magnesium, B2, Feverfew, Andrographis Paniculta, and Coenzyme Q10, for Episodic Migraine Prophylaxis (Note: I added 3G of Niacin following Dr. Hoffer’s Studies from the 50s (I'm a pill-popping manic depressive crackpot, most only need 500mg), Butterbur, B12 (60,000% the RDA), I take C to the bowel (10, up to 50 Grams per day), crap I have to look at the rest. Oh, pyroxidine. There is more. It works.)

https://mdpi-res.com/d_attachment/jcm/jcm-10-00067/article_deploy/jcm-10-00067.pdf

 

[Shaun brearley]

I've been on topiramate for about 8 years know like kids has said need to drink loads of water of you really do piss stones and that really does hurt . But I can't say that it's really helped me with my CH I have skipped a couple of cycles in that time but I don't know if that's down to the Toptrimate.  I'm in a major 

S--t cycle know have been since end of July.  

[Shaun brearley]

Prodictive text kids is ment to be juss 

[BoscoPiko]

3 hours ago, Shaun brearley said:

I've been on topiramate for about 8 years know like kids has said need to drink loads of water of you really do piss stones and that really does hurt . But I can't say that it's really helped me with my CH I have skipped a couple of cycles in that time but I don't know if that's down to the Toptrimate.  I'm in a major 

S--t cycle know have been since end of July.  

Sorry you're stuck in cycle mine started July as well which was early for me and it lasted until October 11th.. sucked ars.. I was originally on toprimax don't know if that's the same as toprimate but I think it is. It never helped me and only gave me cognitive issues (I write alot for work and found myself double typing words constantly) I eventually ditched it but everyone responds differently so I'm glad you get some relief from it. Hope you get out of this bad cycle soon!

[BoscoPiko]

3 hours ago, Shaun brearley said:

I've been on topiramate for about 8 years know like kids has said need to drink loads of water of you really do piss stones and that really does hurt . But I can't say that it's really helped me with my CH I have skipped a couple of cycles in that time but I don't know if that's down to the Toptrimate.  I'm in a major 

S--t cycle know have been since end of July.  

Sorry you're stuck in cycle mine started July as well which was early for me and it lasted until October 11th.. sucked ars.. I was originally on toprimax don't know if that's the same as toprimate but I think it is. It never helped me and only gave me cognitive issues (I write alot for work and found myself double typing words constantly) I eventually ditched it but everyone responds differently so I'm glad you get some relief from it. Hope you get out of this bad cycle soon!

[BoscoPiko]

Have no idea why that came through twice?

[Juss]

I should have clarified, and in the CGRP inquiry posts that Toprimate seems to work best if you suffer from migraines or have migraines as well. Neither Toprimate or CGRP/Monoclonal seems to do much but piss in the wind for CH; however, if you add in the migraine factor the results can change dramatically. Please remember that I have an armchair M.D./PhD 

My headaches are convoluted, an obfuscated cacophony of CH, Migraine, and baseline, not discernible by Johns Hopkins, Jefferson (you know the doc) Georgetown (Dr. Daughtery is a top headache doc, nice but didn’t do a damn thing) GW (George Washington) (I don’t get myself there, it’s mainly trauma probably best place to go for surgical residency in the country for obvious reasons), GBMC (local does a ton of clinical trials a lot of good surgeons) Union Memorial (Top 50 Hospital affiliated with Cleveland clinic in Baltimore), despite me not going to a University of Maryland hospital with my head falling off I tried there, this could carry on. I gave up. I just see nurse practitioners now and get superior care.

My point, I’m different. It works miracles for me, but for some I realize that it does absolutely nothing. Again, I have met enough people to notice that it appears to work best in people that also have migraines or migraines only. 
 

I don’t agree with sugar consumption, but even my NP’s agree with Toprimate, 32 ounces of Gatorade with your required water intake is a good idea. This restores the electrolyte balance and prevents stones, which, sadly, are about incontrovertible.

 

[Juss]

As we already know, Toprimate significantly impacts(on an fmri) signaling of the ACC (Anterior Cingulate Cortex and Gyrus), and causes basal ganglia activation. Dopamine receptor agonists and antagonists affect ACC activation impacting neuromodulatory regulation. Fellow crackpots understand that emotional numbing is caused by the deactivation of the ACC, above or below activation I do know causes psychpathologies.
 

My guess is the “numb, flat, despondent” feeling is valid, problem is I’m already batshit crazy so I don’t notice it. For the rest of you, I bet that it is intense. Compounding the issue, I have had over 60 shock treatments in my life-that targets the ACC as well.

Also, we all definitely know that Toprimate is designed to target the temporal lobes, which if it impacts you enough it can cause similar symptoms as:

Difficulty in understanding spoken words, selective attention, difficulty with identifying and categorizing things, difficulty learning and retaining information, impaired factual and long-term memory, prosopagnosia, sexual interest can go up or down (you can f*%k like a blender on high speed, or be a prude, no in between), emotional disturbances (aggressive behavior, especially sexually aggressive behavior, I knew a Catholic Girl (never mind)). 
 

Now, you can counter this. But, I always state, “to be fair,” and I’m so far gone that Spicoli looks like a genius next to me. I hope that this helps.

 

 

[BoscoPiko]

1 hour ago, Juss said:

As we already know, Toprimate significantly impacts(on an fmri) signaling of the ACC (Anterior Cingulate Cortex and Gyrus), and causes basal ganglia activation. Dopamine receptor agonists and antagonists affect ACC activation impacting neuromodulatory regulation. Fellow crackpots understand that emotional numbing is caused by the deactivation of the ACC, above or below activation I do know causes psychpathologies.
 

My guess is the “numb, flat, despondent” feeling is valid, problem is I’m already batshit crazy so I don’t notice it. For the rest of you, I bet that it is intense. Compounding the issue, I have had over 60 shock treatments in my life-that targets the ACC as well.

Also, we all definitely know that Toprimate is designed to target the temporal lobes, which if it impacts you enough it can cause similar symptoms as:

Difficulty in understanding spoken words, selective attention, difficulty with identifying and categorizing things, difficulty learning and retaining information, impaired factual and long-term memory, prosopagnosia, sexual interest can go up or down (you can f*%k like a blender on high speed, or be a prude, no in between), emotional disturbances (aggressive behavior, especially sexually aggressive behavior, I knew a Catholic Girl (never mind)). 
 

Now, you can counter this. But, I always state, “to be fair,” and I’m so far gone that Spicoli looks like a genius next to me. I hope that this helps.

 

 

Hey juss I don't have my medical dictionary out at the moment and while I love researching all the info you post just chalk me up as slow if you will. I'm a cowgirl.. I rope, ride and die when in cycle. I do my best to stay apprised but refuse to let my infliction encompasses my life. On my good days I ride. On my bad days I pray..

[Juss]

@BoscoPikothat is an excellent attitude to have on life, and I commend you or anyone that takes that approach. It is best if you do all that is possible to move forward and not let the illness define you. While I don’t let multiple illnesses define me, they have destroyed my life beyond repair. I spend every waking free moment trying to prevent others from walking my path in life. I pissed away numerous golden opportunities, and enormous potential. By 7th grade I was in all college level classes. I’m sure that seems impossible to believe, and it’s not to brag, but true. I did nothing with my life, but rack up debt, get in tons of trouble, and leave a path of destruction. Thus, as stated, I try to help everyone, with everything that I comprehend and have experience in.

The worst thing when you have emotional or physical pain, worse, both, is to have idle time. You can take pills, go to therapy, worse bang dope, in the end, a simple fix-keep moving, keep busy. You have the perfect idea. 

[BoscoPiko]

37 minutes ago, Juss said:

@BoscoPikothat is an excellent attitude to have on life, and I commend you or anyone that takes that approach. It is best if you do all that is possible to move forward and not let the illness define you. While I don’t let multiple illnesses define me, they have destroyed my life beyond repair. I spend every waking free moment trying to prevent others from walking my path in life. I pissed away numerous golden opportunities, and enormous potential. By 7th grade I was in all college level classes. I’m sure that seems impossible to believe, and it’s not to brag, but true. I did nothing with my life, but rack up debt, get in tons of trouble, and leave a path of destruction. Thus, as stated, I try to help everyone, with everything that I comprehend and have experience in.

The worst thing when you have emotional or physical pain, worse, both, is to have idle time. You can take pills, go to therapy, worse bang dope, in the end, a simple fix-keep moving, keep busy. You have the perfect idea. 

Your a good guy Juss. The folks on here are good.. hang with us I've learned alot from you! Happy Thanksgiving to you in the am and happy birthday to me in the am!

[Bejeeber]

2 hours ago, Juss said:

It is best if you do all that is possible to move forward and not let the illness define you

Sage. Advice. 

2 hours ago, BoscoPiko said:

happy birthday to me in the am!

Whoa - Happy ThanksBirthGivingDay, or however such a dual event is negotiated @BoscoPiko ! 

[Shaun brearley]

Juss I can agree with everything you say about the topiramate side affects it's screwing my head my memory is shit know and my aggression us off the wall as for my sex life well what is that !!!!! Lol .I've got 2 weeks of the s--t things left then I'm ditching them . My missus thinks I should keep taking them bless her so just gonna keep getting them off doc then gonna flush down the toilet every morning 

[Juss]

@Shaun brearleyI understand and cannot give that medical advice for obvious reasons. For those of you that functioned well, the drug can be brutal. I am just far gone and don’t notice, and I do think you can counter but few try what I posted.

The FDA and Big Pharma have a symbiotic relationship and so they pass drugs if they stand to profit. I thought that NHS and the EU had yet to approve CGRP use and was correct. It works as well, without the side effects (they claim). Give it a few years and all the evidence surfaces, somehow as if magical. Here is a charity in London that provides the CGRP, 4 options. It’s expensive, but about half the cost of the drug. AGAIN HALF THE COST OF THE DRUG! It should cost £524.96 and it costs £386.5 
https://www.nationalmigrainecentre.org.uk/migraine-and-headaches/migraine-and-headache-factsheets/cgrp-and-anti-cgrp-injections-for-the-prevention-of-migraine/

I know with a common law system everything is different, we have 4 commonwealth states-don’t get a criminal charge in those states. A misdemeanor, I think they abolished that in the UK back in the 60s, can lead to a life sentence. These states operate much like the UK law system. 

Anyway, and so, I found the latest NHS guidelines on Food Supplements and FBO “The Food Informations Regulations Act 2014.” 

https://www.legislation.gov.uk/uksi/2014/1855/made/data.pdf
 

Can you take food supplements? The Amino Acids, Vitamins, Minerals, do help. I’m sure someone can link you to the Vitamin D protocol. 

It seems some, especially with pure Cluster Headache, hitherto CH, are unfortunately, and disproportionately, unable to find a prophylactic. They seem to try drug after drug, without success. Even though I have multiple forms of headache, I didn’t get results until extensive tinkering and using the what you guys call food supplements. 

CH without Migraine is another animal, especially the episodic, and my concern is if that shit turns chronic. That happened to my Uncle. He was episodic for over 30, possibly 40 years, retires and goes chronic. How does that work? And, seriously? He tried everything, and my family is the type that won’t take medication if it were to save their life.

I hope that this helps. And, the charity claims a 50% to 60% efficacy rate. I would suspect hire for migraine, and much lower for CH, and somewhere between the two of you have both. Good luck. I know that Thanksgiving is American, but perhaps you can reflect on all of your blessings for the year. 

[Shaun brearley]

I'm lucky well I think I'm lucky .i do only suffer from CH episodic , and your rite it's my worry that it turns to CCH which is where I'm at know we think !!!!! My last meeting with my Neuro last week was going that way . But I will cross that bridge when I come to it I guess . I'm already on D3 regime which has really helped so much . Pain levels have come down so much 

[Juss]

Unless I am missing something, all the drugs for CH are borrowed, “Off Label.” That doesn’t help things. Worse, abortive measures are split 50, none worked for me, or I robbed Peter to pay Paul. Even Oxygen is a chance, some try to present it as if it works for everyone. I have seen otherwise. 
 

I have my theories on how to prevent, but without a lab, willing test subjects, and being at University it won’t pan out. Besides, I’m not about to pan out several hundred thousand on a useless Biochem STEM major. Talk to people, I talked to several, they are my Uber and Lyft drivers, it is a useless major. That is why I don’t pursue it. And thus, I won’t be able to help you guys. My point, when I do return to University I will invest in what pays serious money, Urban Development and Economic Planning (Real Estate Development) and becoming a Quant. 
 

I will keep researching for you guys, but I don’t know, money talks bullshit walks, niche markets don’t get the drugs, less they stand to profit.

[Shaun brearley]

I understand where your coming from buddy 

[Shaun brearley]

As for meds for CH borrowed i keep telling my Neuro this he keeps telling me that I'm wrong !!!! But I've also told him that he is a jumped up f---ing a---hole that he know nothing about CH and he doesn't want to know anything about CH and that he would be a lot happier if I wasn't his patient 

[Juss]

@Shaun brearleyUnfortunately the “specialist,” as they often demand to be called over on this side of the pond are not much better. Often with something like CH, you are subjected to experimentation, and if not careful, becoming a pharmaceutical lab rat. For the record, having being a well traveled patient with specialists and surgeons, all of those with CH seem to go through a similar battle.

The only advantage that I or we have is in elective surgery, neuroimaging, and surgery. Canada is supposed to be the role model for your style of healthcare, and people fly to Poland, pay a $1,000 U.S. dollars to take an MRI and fly back. If not they won’t know the severity of the suspected cancer, and could wait much longer than 9 months. I can get an MRI the day the doctor or NP writes it, walk in. You tell me. And with surgery, if you have the right coverage, you will get exceptional surgical procedures.

My point in all of this is, as of now, I don’t know what to think of neurologists in any type of healthcare system. Honestly, it doesn’t appear to be that convoluted and complicated, but I could be terribly wrong and hate to oversimplify such a devastating  illness.

The fundamental issue lies in profit and obtaining grants. Research grants are so damn limited and competitive that I just don’t see people in the U.S. excerpting the effort.  
 

The other issue lies in the fact that-and this by no means evidenced or medical based-I have never witnessed another illness whereby a drug works for one, fails in another, and so forth. Even the illicit options are that way. Perhaps that is why none of the pharmaceutical companies jumped on board? Again, in my ignorance I have never seen something so perplexing.

Last, I am sorry for the late reply. Even I struggle, despite my experimental self-treatment. I got nailed with my headaches and was flat on my ass. My house manager came over, woke me up and told me you have to cook, remember? I was like, merde. Jesi li ozbijan? And, every hour I had to wake up baste the bird, and recently fix all the sides. 

The only abortive that I willl use is the antiemetic Phenergan, promethazine, but good luck. In my area it is easier to get a script for Lortab. That isn’t hyperbole. My Psych used to write it, now she can’t. She couldn’t get a script after her surgery. They push odanestron, but that does not cut it. And Phenergan came in every form that I prefer not to blast. Yes, nausea meds can make for good abortive medications.

Last, and again not scientific, you must learn to knock your ass out when going through it. In a cruel twist of fate, it seems that most with CH end up dancing with the nasty bitch. With severe fibromyalgia and a exceptionally rare autoimmune condition known as Stiff Person Syndrome, I am always exhausted, and thus, with extreme pain, hydroxyzine helps in me black out.

Good luck.