What to eat... or not able to eat.

[Sue mcdonald]

Felt this deserved it's very own folder/topic.

It's rather common for people, when their lives seem to spin out of control? For them to try to control their food intake. Its called an ed or eating disorder. One of the first things people will show the door to - is protein. Keep them carbs and chocolate.  LoL. But ed's are mental health issues and not a good sign. You might start out thinking you are controlling your food? But its an insidious slide into where you cannot get back on track with normal eating patterns, a snake that often turns on you and bites.⁸ And so? If eggs (or whatever-)  are a food you can tolerate? Its better to eat that twice a day rather than fade out meals and to not eat. I have heard it said, dealing with chas is much more difficult when you are not eating. So far so good for me and eating. But i gather there's some other folks who have rly had difficulties with food. 

[Shaun brearley]

7 minutes ago, Sue mcdonald said:

But i gather there's some other folks who have rly had difficulties with food. 

Just can't bear the sight of food when in cycle . Plus I vomit like no tomorrow when under attack.  I lose so much weight when I'm in cycle then take months trying to put it back on again

[Sue mcdonald]

Well. Truth is we r better off health-wise to be thinner rather than heavier. But i kno... too thin and not eating isn't good.

[xBoss]

On 1/27/2022 at 4:48 AM, Shaun brearley said:

Just can't bear the sight of food when in cycle . Plus I vomit like no tomorrow when under attack.  I lose so much weight when I'm in cycle then take months trying to put it back on again

Wow, I did not know this was a thing. Sorry mate.

[Sue mcdonald]

I had it only a few times and i wasn't nauseous, but the vomit came on real fast. I was trying at 1 point just caffeine pills and I'd vomit them - screwed up electrolytes - and brought on chas fast & bad.

Now ? I try to keep saltines and little kid graham crackers and if i start to feel even a little bit off stomach wise i try to get something in fast and that seems to help. I also try to even everything out, including food. And thats rough, for me... i normally prefer 1 meal in evening but now i try to have brkfst, snax, and dinner - at least. I just try to keep everything across the board stabiluzed. Its just where I'm at. Seens to help me. 

[Juss]

I have that issue, and it is not specific to a food group. Unfortunately, I know others as well with CH that experience this. Ondansetron never does the job-costs a fortune. The fortunate news is that you most likely don't live in an area with junkies and pushers that lace Promethazine with Codeine, as I do.
 

That means that you can get the old neuroleptic, which oddly is a much better antiemetic, Promethazine. It is available as a suppository, in a tasty dissolvable form, and as a tablet. This aborts and shuts down, all nausea. I have not met one person that had nausea after taking this. You may need a few follow-up doses, but you will be able to have food. 

Since promethazine was developed in the 1940s, it should not cost more than $3 or $4. It appears to only be a major hassle/issue in Baltimore to get a script for the said drug. My friends in Texas, Pennsylvania, and other States get shitloads of this stuff. We have a multi-billion dollar narcotic illicit industry in Baltimore alone, and I-95 is Heroin Highway. That is why.

 

[Sue mcdonald]

Its just that i have a different perspective on this, because of my dog.  She usually n often alerts to my chas 30 to 60 minutes prior to my knowing i have one.  So.. in real life? that means our bodies (or at least my body) is undergoing a bio.chemical change prior to my self-knowledge.  This leads me to respectfully believe our bodies are undergoing a change that *IF* we could all just have that immediate first readout? We could all do something to head off the crisis of being so sick w chas. Thats my thinking.. and yes - she frequently, kinda like, scans other people's bodies, too, but has never alerted on anyone else. 

Maybe its the:

strong acid <-->weak base

change that causes the gi tract issues. Bicarb undergoes change (well, yes - why?) Prior to realising it's ongoing chas. See? If you could get on top of it *before its problematic? It prolly would help ease some of the severity of symptoms. Thinking down the line... the chas change. Theres a triad of asthma, eczema, & allergies. The eczema changes often in that, what works for awhile? Then doesn't work so well. So people rotate thru about 5, 6 different protocols to tx it. We dont think of allergies or asthma as being autoimmune, but eczema does fall under that label. I knew a man who ate "bad" chicken. most likely contaminated w a virus.  And a component peice of viral dna combined w chicken dna and for the rest of forever?  Eating any chicken caused a rxn as though it was bad, even when it was not. Our immune systems can react to good food if it has identified its dna as previously contaminated. Did that come across right? Food for thought

[BustOrNothing]

On 1/27/2022 at 3:48 AM, Shaun brearley said:

Just can't bear the sight of food when in cycle . Plus I vomit like no tomorrow when under attack.  I lose so much weight when I'm in cycle then take months trying to put it back on again

I am the exact same way. I don’t get the vomiting, but the pain just kills any appetite, and I have lost 20+lbs in under two months. And takes foreverrrrr to get it back.

[Juss]

Find the strongest antiemetic your doctor or NP feels comfortable writing for, in copious quantities. As far as I know, only Promethazine is by suppository. By orally dissolving tablet form, Odanestron is minimally effective at best, Promethazine is superior. The junkies have their pusher cut promethazine with codeine and ruin obtaining it for us normal folk who don't have problems with control.

[ACHUK]

I do find I get significant changes in my appetite when in cycle. I find that my hunger levels become low or disappear completely and also the thought of eating makes me feel sick. On occasions when I am hungry or want to eat I inevitably find that once I start to eat I feel sick again and this results in a partially eaten meal, even though it was likely something I enjoy and was looking forward to having. I would not class this an eating disorder though. I think it is just another symptom of the condition. I appreciate some clusterheads will have issues relating to food though and my thought are with them having to manage in addition to CH.

As a general rule apart from food related nausea I don't suffer with nausea and vomiting when in cycle or during an attack, although I have had a couple of cycles when nausea and vomiting has been a constant issue which I've required antiemetics. I remember once dealing with an attack in the night and decided to use my GammaCore at the same time which caused me to projectile vomit into a high-flow mask. Lets just say there were several opposing forces of physics involved and with electrode lubricant at play also it was rather a messy night and one I'm not keen to repeat.

I tend to be mindful of nutrition now when in cycle as I want to make sure my body is getting some nourishment and have found I tend to have small meals / snacks rather than a full meal which I struggle with. A protein shake I find helps and I do love avocados. My diet won't be as good as when in cycle but I guess it's better to have something you will eat and in a more manageable portion that wasting food or going without. I do find I loose some weight but just surviving a cycle reduces my worries about food as sometimes just staying alive is a real struggle and the overriding priority for me. I try to be kind to myself and beating myself up for not eating well isn't helpful and an area that I can try and give myself a break on.

[CHfather]

That's a nice post, Adam'.  Thank you.

5 hours ago, AdamCHUK said:

decided to use my GammaCore

Can you tell us how the GammaCore has been for you?  It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).

Edited March 14, 2022 by CHfather

[Shaun brearley]

As far as I know the cost in UK for gammacore is first 3 mouths free then it works out around £2250 a year , but being in the UK it's all covered by the NHS ,but not all areas in UK will cover the cost .so it depends where you live in the UK if you get offered this treatment 

[ACHUK]

16 hours ago, CHfather said:

That's a nice post, Adam'.  Thank you.

Can you tell us how the GammaCore has been for you?  It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).

Yeah absolutely. So I got prescribed the device by my neurology. I didn't have to pay anything and have had three top ups so far. You get a 93day card with the device and it will run for the 93 days and then stop working. I just email my neurologists secretary and she sends a prescription form to GammaCore and they send out another 93 day card and lubricant. I haven't had to pay anything for this which is something I'm grateful for. 

So you can use it in two ways - as an abortive (3 x two-minute stims, 3 minute wait and then 3 x two minute stims) and as a preventative (3 x two-minute stims in the morning and 3 x two-minute stims in the evening). I was mainly using it as a preventative and I think it might have reduced the intensity or attacks but didn't get rid of them. There was some residual nerve pain / sensations afterwards for about 5-10 mins I guess I could liken to shadows in intensity but running up the nerve in the neck and head. It's difficult to say how benificial it was as it's something I'm still experimenting with.

In terms of using it as an abortive I stopped using it for nocturnal attacks as they were always so well developed and I found it didn't really help with the pain and if anything agitated them more so. I use as an abortive for some attacks I get during times I'm awake and again although it doesn't get rid of them I almost got the sensation that it was spreading the pain out over a larger area and so it almost didn't hurt as much as the pain was spread over a larger area and so hurt less even thought the pain didn't really dope. I hope that made sense but I always find my CH feels like a nuclear bomb has gone off inside a single cell. 

In summary I'd say I'm sceptical about it's effectiveness but it's definitely something I'm gonna continue with as I really haven't used it enough so say either way. I hope that helps, let me know if you want to know anything else.

[BoscoPiko]

5 hours ago, AdamCHUK said:

I was mainly using it as a preventative

This is interesting as I bought the cfaley (I am assuming they are similar devices) when this debacle started and tried it as an abortive. The device never aborted any CH attacks but was sort of a good distraction after you got used to the sensation. You are supposed to use it daily on prevention mode but I never followed through after it failing to abort. Now I am curious if I should give it a go for prevention. Anyway you have to have a script here in CA to purchase and the device costs about $500.00 after shipping and taxes but there is no subscription or monthly fee after that. My true thoughts however are that it's more of a welcome distraction than anything else.. I could definitely be wrong!

[ACHUK]

I'd not heard of cfaley but just did a quick search on google. I think both devices work on similar principles but the cfaley seems to target the trigeminal nerve from the nerve endings. The gamma core plays with the vagal nerves. I seem to remember the packing note having a price of £3500 or there abouts which would make it a more expensive option. Not sure how much they go stateside or if you need the popup cards. It looks like you end up paying out for the electrode packs on the cfaley as opposed to popup cards and lubricant. I agree with you about being a distraction and one thing I do remember was getting a sense of calm about me after having used it as a preventative.

The reason I'm keen to continue with it is it non-invasive and isn't some kind of drug or substance I'm putting in my body along with everything else. Be interested to see how you get on maybe after some regular use.

[CHfather]

Thank you again, Adam', and thanks, B'P'.

So, GammaCore, which works on the vagus nerve (as Adam said), is an approved treatment for CH.  Here in the US, it is something like $600/month after the first month, which is free.  Somehow, despite FDA approval, I haven't heard of insurance covering it, although maybe it does for some people. Cefaly, which works on the trigeminal nerve (as Adam' also said), is not FDA approved for CH, but just for migraine (I'm pretty sure).  Think I have all that right.  ClusterBusters was, at least at one time, very supportive of the development of GammaCore, and some heroic people actually did clinical trials where they could get a placebo device, which would presumably have no effect for aborting attacks (although, as I recall it, as is so often the case, the placebo devices actually did have some effect for shortening attacks).

It was always hard for me to understand any broad appeal for GC as a CH abortive, since it generally takes at least as long as oxygen to work, at least according to the clinical trials. But I could see the appeal because of portability, allowing you to potentially stop an attack while out someplace, and because of the possible preventive effect.  If it wasn't so expensive, I could see saying "Why not?" and using it for that purpose.

 

[BoscoPiko]

58 minutes ago, CHfather said:

If it wasn't so expensive, I could see saying "Why not?" and using it for that purpose.

 

 

1 hour ago, AdamCHUK said:

cfaley seems to target the trigeminal nerve from the nerve endings. The gamma core plays with the vagal nerves

Really good to know! Thank you for sharing this!

[ACHUK]

Wow the cost incurred by you guys stateside make my eyes water! I can't imagine having to deal with the financial burden of treatments along with the condition as well. You have my admiration for sure. 

[Juss]

Get a prescription for the Zynex Tens unit, it should address all of your issues. If insurance refuses to cover it, the cost is $25 for 10 payment months. It comes with new leads each month, which is most likely what you will have to pay for.

The device is 40 or is 400 times, more powerful than a home Tens unit. It can perform neurostimulation and several other features, I think neuromodulation. 

https://www.zynex.com/products/nexwave/

This is by prescription. I don't use mine. My insurance covered everything. I'm too far gone. Honestly, I have my doctors shoot me up, load me, and prednisone me up. It comes from my days of Ice Hockey when we did not report head injuries (that is what girly men do) and shoved chem tabs up our nose. When injured, they shot us up with steroids and narcotics. I never changed. 

You can have your physiatrist, anesthesiologist, rheumatologist, or the like check it out, and order it. I recommend Fentanyl Transdermal

[Juss]

@AdamCHUKRespectfully, I'd rather pay for my healthcare than have the government take over. I want full control of the doctors, surgeons, Nurse Practitioners, labs, and radiology that I see. If anything, I feel we should pay out of pocket for our GP, Lab, and similar. A flat fee based on income. Insurance should only cover catastrophic expenses. Most of my doctors do such. I don't want or trust the government in my healthcare. Plus, it could impact my right to own a shotgun or.22, which if you come through that door unwanted, you will meet Mr. Buckshot. 

[ACHUK]

I appreciate where your coming from @Juss. I'm just grateful that regardless of what life throws at me and however much money I have I know my health will be taken care of. An income based contribution I guess is kinda how we fund healthcare here. I'll check out the Zynex though. Have you used it for long?

[Juss]

Test

It won't let me copy and paste my text. I'm not going through the process. Forums are antiquated technology and most likely are not capable of such from iOS. I will try another day.