Jump to content

no rhyme or reason. Nothing works


Uncle Romulus
 Share

Recommended Posts

ive had cluster headaches for 25 years.  No doc ever knew what it was.  I was terrified getting a girlfriend because I thought she would think i was insane if I just stopped being social and stared at the wall moaning for 45 minutes.  I went to explain it to her, and turns out her mother in law has the same thing.  Thats how I found out what it was.  It was such a relief to know i wasnt crazy.  I hate that other people feel this pain, but i figured out what it was.  I least I know now that I am not going to die when I have one.  I always thought I would.  You know what im talking about

Link to comment
Share on other sites

i was just watching the video.  He talks about smoking having something to do with it.  It does for sure.  How do I know?  Some of my clusters are triggered by the littlest bit of smoke.  Some clusters, I feel one coming, have a cigarette and it goes away.  So it has something to do with it, but, no rhyme no reason

Link to comment
Share on other sites

Hello, I am sorry that you are here under these circumstances. I will just ask some questions because my approaches deviate from the accepted. Again, I am sorry that you are here. There is a ton of hope. Don't let people fool you.

Have you had a PCP, preferably a neurologist confirm that you have Cluster Headaches? If so, an ICD diagnosis. Next, have you been prescribed any medications? If so, what are you taking? Or, what bullcrap have you tried? Pardon the cynism.

I never followed thru on it, but yes there appears a casual association between smoking and Cluster Headaches, but to blame that as your source of Cluster Headaches would be speculative. 

Smoking is a vasoconstrictor and most likely why your attack goes away, the cigarette has nothing to do with it. If that approach works, drink a Starbucks Double Shot, or better a Red Bull. All that Caffeine and Taurine will cause vasoconstriction, among things not worth bringing neuroanatomy into.

As far as triggers, that is tough because mine has a mind of its own and comes when it wants. I focus on prophylaxis and aborting when God forbid I get one. There are some things, MSG and processed food. Far too much sugar and caffeine as well.

I'm sure others can dial you in. They will help you with doctors, treatment, all of that. I shy away from all of that. 

  • Like 1
Link to comment
Share on other sites

3 hours ago, Uncle Romulus said:

i was just watching the video.  He talks about smoking having something to do with it.  It does for sure.  How do I know?  Some of my clusters are triggered by the littlest bit of smoke.  Some clusters, I feel one coming, have a cigarette and it goes away.  So it has something to do with it, but, no rhyme no reason

Hi UR...welcome...

...it is by far weird the relationship between smoking and CH. ..

...trigger for some, relief (tho very unusually reported) for others. i could smoke w/o effect on CH before or after a hit ....during  a hit a cig would massively ramp it UP. most unaborted hits were survived with little more than desperation and the reward i knew i was gonna get of having a smoke AFTERWARDS. 

....in cycle second hand smoke was a frequent trigger....both when an active smoker and not...

....many many reports of quitting having no effect on CH (same here)....but it's such a nasty, harmful habit that quitting should be a priority w/o regard CH anyway....

best

j

  • Like 2
Link to comment
Share on other sites

Hi @Uncle Romulus, good thing you've arrived here.

I went for some years with CH just assuming no medical or other intervention could help with it.

Hopefully that hasn't also been the case with you, but if it has, I believe you'll be in for a pleasant surprise at the possibility of finding relief - even to the point of prevention of entire cycles - as many of us have.

Good starter info is found on that when clicking the blue "New Users - Read Here First" bar at the top of the page.^^^^^^^

 

  • Like 4
Link to comment
Share on other sites

6 hours ago, Uncle Romulus said:

i was just watching the video.

I'm sure I should know this, but what video are you referring to? (I've been here 11 years, and I admit that I haven't kept up outside this forum, even with things at this site.)

As others have already said, there's a lot of possible help here, and if you feel like it, you might tell us how you are treating your CH now.

It's possible if you skim through this file, it might have something new for you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  • Like 5
Link to comment
Share on other sites

I rly didnt smoke. Nor do i. But my parents sure did! And they had "cocktail parties' where everyone smoked n the rooms were full of smoke.

Ive had them for decades only recent dx. Also get migraines, tension has, tmj has, normal has, has w no pain, cha w no pain. So i tend to think along lines of - headaches... w.out labeling... i was originally excited to find the label. Dont ever give up hope, as a child? I fell off horse, ruptured spleen n it healed naturally in s.a. written up in journal n changed face of ppl medicine. I also had a 2 yr old colt who got a navicular bone infection. Top vet in u.s. (wrote lameness text bks for colleges) told me he cldnt be saved. I brot him home n said f* that- im saving him. Point is? I did figure out how to cure that.  Doc told me to tell him exactly what id done, that he had ppl who'd pay a million dollars just to save their horse's life (not even sound, just alive). He helped me by drawing diagrams, so i explained.  It was written up n now they r a million miles past that. Done some other exciting stuff.. but don't give up hope. Kinda also ascribe to the body being a vat of basically water w chemical rxns all over, all the time.  So sonetimes changing the chemicals can change the end result? Like adding in a cigarrette.  Ive also seen correlations to hazel eyes, parent being engineer in paper industry. Etc. Neurologist told me, tho, ha's wld change over time. Another doc said thell often resolve w aging.

Mine are slowly (oh so slowly) decreasing in both pain & intensity.  How do u deal w the pain?

Has anyone tried chemically cauterizing cranial nerves?

Wld that help? I suppose that wld presuppose nerves r basic problem, mmm?

 

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...