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Jtux99

Anyone have any experience with nerve blocks?

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Hey all, 

I'm working on a book about CH, and am looking for stories about personal experiences with nerve blocks. I'm specifically looking to highlight some of the often-overlooked negative consequences of this procedure. Thanks in advance for your help!

 

:D

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i have been getting the nerve blocks for just over 4 years!i have not had positive results,but me and my specialist are convinced the negative results are due to me to 

being in full cluster at the time the,reason for that is when i go into cluster i have to organise appointment and flight,therefore i would be at least 2 weeks into full cluster!

although my specialist informs me that he has had great results with other patients!

good luck with your studies,just let me know if can help with anymore input!

 

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Thanks filacibin! I'm curious why your neuro would continue to prescribe nerve blocks if you haven't demonstrated positive results after 4 years. I hope he/she can steer you in the direction of something more effective! 

 

J

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I think if nerve blocks worked reliably there would be more published.  Blocks are well compensated procedures.  There little data to support and even if there was the injection is very operator dependent.  Also its hard to imagine someone with enough cluster patients to claim "great results".  Not to be negative but......

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Hi

My 18 year old son has had 2 episodic cluster periods ( march 2016 x 3 weeks and sept 2016 x 2 weeks ) He was treated with prednisone and verapamil at onset. Oxygen was helpful the first time and not the second. He is allergic to triptans. He had sphenopalatine ganglion (SPG) block with 4% cocaine drip intranasal 10 days into the last cluster period. The SPG block did cut in half the length ( 25-30 min down to 15-18 min) in each of the final four headaches of his cluster period . The intensity was unchanged but each headache was absolutely shorter (He had 9:30 AM and 9:30 PM headaches so we could clearly track the length). As I anticipate he will have a new cluster period start in the next 2-3 week we will begin SPG blocks on day one or two and assess. I will report back when we see if this plan is helpful.

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Hi,

no way cocain does any good to your son... I recommend digging deep into this forum and reading carefully the main threads.

if your son is not handicapt by other means, probably better he starts by himselfe getting up to date reading in this portal.

hmf

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Interesting that they're still using cocaine.  That was the original substance used, but for quite a while it's been primarily lidocaine.

Would very strongly urge your son to start now on the vitamin D3 regimen that has helped hundreds of people with CH.  You can read about it in the ClusterBuster Files section of this board. 

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sorry id not get back earlier guys,the reason why i  did continue to receive the blocks from my specialist is for many reasons,!the first one being any line of defence

with this condition is another comfort.!for example ,when i blocked my receptors with mm last year it gave me some hope!,as i have not informed my specialist 

of my discovery of mm and lsd treatment !reason for this is i do not want to jeopardise my future treatment ! i have had to much of a bad experience with 

docs all my cluster life ,apart from my specialist who has been treating me for over 15 years !so i also do not question his results ! some might think

why not say !but sure some do understand,!

i will do my very best to get the results for us all ,i do not do web stuff,i am only on this site,"like my life private!"

but will try my best to get these results, or you could probably get my specialist on the web," i would not know,"

"we are here for each other!"

 

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Thanks all! L. Rich, please do keep me posted about your son. Pebbles, my theory is that the blocks DO often work, but for the same reasons (and with the same often-very-serious side effects) that steroids do. I have a hunch that there are people out there who've had necrosis and demineralization due to excessive blocks, but I haven't been able to find any examples. But I do agree with you that the publications (which are almost all glowingly positive) are leaving out a very important part of the story. 

Filacibin, thanks for your reply; best of luck to you. 

 

J

 

 

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I really don't find these reports glowingly positive.  They are more like show and tell stories - individual case reports.  Even if they work for a headache it is a pretty invasive way that has a limit on how much steroid you want to put in a single area.  Our local pain folks are soaking the area with local anesthetics but the cost is so high it becomes impractical with mediocre results.  Like you related there can be some irreversible consequences.  The implantable nerve simulator also is intriguing but again it is largely aborting attacks but at least it is readily available (being an implant - not treatment option yet)   and can be turned on and off repeatedly without causing tissue damage.

 

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there is a device available on the market sending out electric pluses to the area one is pointing it (neck or head) in order to stimulate/block certain nerves involved in migraine  & ch. German based forums where I've seen people speaking positive about this unit...

well, I was not attracted by the device as it claims to help 4 migraine and ch in a extremely unpleasant way. I did not analyze the unit by myself but I'm aware it is a terrible rip-off. The producer makes a funny-ugly statement about what and how the unit works. Most irritating: after just a couple of hundert shoots one has to reload/buy a new one.

What is it really? Basically a battery a kind off mini counter, counting the shoots user applies, sending every time upon users click a small amount of electricity to your scalp/neck/head. To me one of the most brutal/cruel ripp off ever seen.

Working? Yes and  no. I could use it in certain stages during my attacks as my cluster does hit me in 2 phases. Phase 1, pain sneaking slowly but steady from right side of the neck just beside the throat trying to hit the temple at the right side of the head. Phase 2, once pain hit the temple I know I've lost the game and the beast will hit the fan badly starting eating my right eye, feeling the glowing steel from behind...

However I can, when in pf phase suddenly receiving an attack (they are normaly far less painful, sometimes even easy to handle) stop them in phase 1 by pressing gently nerves/chanels at the right side of the throat and aprox. 2 cm above. Breathing technic at this moment too can make big difference on top.

So yes, I can imagine such technics could help a few. But have a look into the way the beast is kicking me in my ass which may differ from yours...
But NO. Being in a real cluster-phase, ch is coming so fast, so fast phase 1 even would be noticeable and fiddling with my finger at my throat will not make any difference.
And again I won't support companies ripping off people suffering, even stating they would have some magic in their expensive ¨bullsh.." device.
And of course there a tons of Trolls in the german ch forums having seen this unit. They shall go to hell too...

my 2 cents on nerve blocking/stimulating DEVICES, :(

***

and finally I may have got it: GammaCore Device 
just found on this portal in one of chf's thread the name of the device and reporting success as abortive even may work as preventive device. Origin Europe, must be available in USA by now.

Yes, this seems becoming quite normal to me in these days: I know I'm right but wrong for sure. In the first approach I always guess I'm right in order to realize thereafter that I'm not right but wrong. So I remember it, correct my head and going on. In this case still being very unsure but understanding I would need to go deeper into the subject (uh, reloading CammaCore Devices) But yes, wondering why this unit/device does not have any space on this portal? Not being available in USA maybe? 

;)

 

 

 

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Hi,

had an spg nerve stimulation nerve block/radio frequncey done on the 23rd March,

through the side of my cheek,under x-ray guidence,was asleep to start with,but the pain when woken for them to position it was unbearable even by cch standards.

said they would call me in 6 weeks to see how im getting on with it,but three weeks in and more or less back to how i was before the procedure.

does this take time to work better or is that it..

any advice off anyone who's had this procedure done...please

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Kev', I would suggest that you also post your questions at the "Cluster Headaches" Facebook group.  More people will see it there.  You have to request membership in the group, so it might take a little while. I tried to put a link here to the group, but the system won't let me.

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The folks there might be able to help you.  That group is not well liked here, but that has to do with "politics" more than whether people there can answer your particular question.  (Leaders of CHSG tend to fight against the alternative treatments -- "busting" -- discussed here, which is not appreciated.)  The group I was suggesting is just called "Cluster Headaches."  The top, pinned post at that group is about 5-MEO-DALT.

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I have the gammacore, as far as I know still not available in the US. I'm in Canada. It didn't work for me and I used it diligently for over a month. It was $750 (ouch and 100% out of pocket and private insurance won't touch it) my device is not empty and still has 150 doses left and just sitting in the box now. 

I give myself SPG nerve blocks at home with 10% lidocaine every 3 days. Day I do it attacks aren't as bad, we just switched to 10% from 5% a few days ago and the 10% is a lot better. Makes the attacks so I only need oxygen for about 20 hrs which is huge for me. 

I have had occipital nerve blocks. Found you need both sides done, i only had decreased frequency for about 4 days after but was told in severe cases it works to redo the block every 3 days then every week then every 2 week to get on top of it. 

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CarAB, is this device gammacore a hoax or are out there really people eq. communities confirming this unit working? I'm interested getting more information on this. I do remember migraneurs talking about it. Thanks

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There are many studies that have been done and it has been effective for some. But like anything what works for one might not work for the next. I don't think it's a hoax, it stimulates the vagus nerve. I was told by my neuro that at the most recent headache conference in the US gammacore was talked about in detail about treatment for CH and they were waiting for FDA approval in the US, but Canada headache specialists were encouraged to try it on patients not responding to treatment. I was picked to try it and unfortunately it didn't help but I was optimistic. 

The spg nerve block has been move effective. Doesn't make them go away, I still get the attacks just reduces the pain level. (That's inserting lidocaine deep in the back of your nose with a thin Tube and having it absorb over 30 minutes) It costs $40 for 10% sterile nasal compound lidocaine for 30 days and a pain clinic charges $100 per spg block so cost effective to have your neuro teach you to do it at home and it's very easy. 

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I'm not sure if I count as a nerve block success or not.

I can't have steroids, I've got a mast cell disorder (most likely mastocytosis, but my allergist doesn't want to do a bone marrow biopsy to confirm, so right now we're just saying Mast Cell disorder.) and I'm allergic to them.

Lidocaine blocks helped.

Radio-frequency-ablation helped the first go-around but I side switched.

So the next month they burned both sides.

Somehow it made the pain much worse. For about 6 months. They said my nerves  grew back within a week? I have no idea if that's even possible or if pain management was talking out of their ass but they didn't want to touch me after that.

Now I get botox every 3 months like clockwork, and it dulls the intensity of the CH a good bit. It's kind of a stop-gap measure and I can tell every 10 weeks or so  that it starts to wear off. I have major alien forehead. Still get hit. Don't always get woke up by my 3:43am screamer anymore though, and I'm taking a shit ton of Melatonin. When it starts to wear off, I start waking up then. Or 2:43am when the time changes...

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