Yet Another Bulletin Board

Welcome, Guest. Please Login or Register.
May 17th, 2024, 3:15am

Home Home Help Help Search Search Members Members Member Map Member Map Login Login Register Register
Clusterheadaches.com Message Board « Any suggestions? »


   Clusterheadaches.com Message Board
   New Message Board Archives
   2005 Cluster Headache Specific Posts
(Moderator: DJ)
   Any suggestions?
« Previous topic | Next topic »
Pages: 1  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print
   Author  Topic: Any suggestions?  (Read 364 times)
clarence
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Wake up

    nailinmyeye
WWW Email

Gender: male
Posts: 1020
Any suggestions?
« on: Feb 11th, 2005, 2:09pm »
Quote Quote Modify Modify

I'm trying to figure out the most recent turn in my head problems.  Can't get in to see the doc for a week, so thought I would ask here.
 
I thought I had really eliminated the night time hits with melatonin.  It has worked great for me.  2 weeks ago I start waking up about 3-5 times a night, with small headaches, but am able to go back to sleep.  Don't feel like I am breathing too well.  This past week, I wake up every night literally gasping for breath, get slammed with a huge cluster, and can't (or am afraid to) go back to sleep at all.  I have been up all week.  The time of my waking is always about the same, about 2am.  This doesn't surprise me.  It is the breathing issue that has changed.
 
I uped the melatonin.  I am taking 6 mg a night before bed (of course beore bed, I can't really take it after bed...).  Also up to 480mg verapamil a day.  Can't get oxygen until the neuro prescribes it, the neuro's office won't call me.  I'm getting pissed.
 
It is the whole breathing issue that is worrying me.  Is this some kind of sleep apnea that is aggrivating my clusters?  Could it be caused by my clusters?  And why did it start all of a sudden?  I like breathing, I want to breathe.
 
Any suggestions, wisdom, advice is much appreciated.
 
Thanks,
Casey
« Last Edit: Feb 11th, 2005, 2:10pm by clarence » IP Logged

NY Yankees Suck!!!

"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson

Where I live: http://rainfallsoneveryone.com
E-Double
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Are we ourselves?

  Edoubleitk   Edoubleitk1
Email

Gender: male
Posts: 6458
Re: Any suggestions?
« Reply #1 on: Feb 11th, 2005, 2:20pm »
Quote Quote Modify Modify

Breathing problems should be a concern bro....
Of course you will talk to your doc yet in the mean time could you try those nasal breathing strips??? like the ball players use....They've helped clear my passages....
 
I hope this doesn't sound to weird but if it is a matter of a blocked nasal passage this can possibly  help for the short term until you can see the doc.....
 
Wishing you well!
 
E.
IP Logged

I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
nani
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Got kudzu?

   
WWW

Gender: female
Posts: 7953
Re: Any suggestions?
« Reply #2 on: Feb 11th, 2005, 2:26pm »
Quote Quote Modify Modify

I'm no dr, but it sounds like apnea to me. I have it also. The breathing strips and sleeping with your head elevated (but not on your back) may help until you can get to the doc and get a sleep study done. Good luck, casey. love and pf wishes, nani
IP Logged

Others may come and go, but MY power is MINE.
Langa
CH.com Alumnus
New Board Hall of Famer
USA 
*****




So many donuts, such little time...

   


Gender: female
Posts: 4179
Re: Any suggestions?
« Reply #3 on: Feb 11th, 2005, 2:49pm »
Quote Quote Modify Modify

Clarence can't you get Welder's 02?  You don't need a script for it...
 
Langa
IP Logged

When you saw only one set of footprints, it was then that I carried you.
BikerBob
New Board Hall of Famer
USA 
*****





   


Gender: male
Posts: 680
Re: Any suggestions?
« Reply #4 on: Feb 11th, 2005, 2:51pm »
Quote Quote Modify Modify

Check your blood pressure !
 
You wrote that you're "up to 480mg verapamil". It's possible that this has made your blood pressure too low. One of the symptoms of low blood pressure is "shortness of breath".   When the blood pressure is too low, there is inadequate blood flow to the heart, brain, and other vital organs. The inadequate blood (oxygen) flow to the brain could be triggering the hits.
 
Bob
IP Logged
Margi
CH.com Alumnus
New Board Hall of Famer
Canada 
*****




Nuthin like a good neck rub!

   
Email

Gender: female
Posts: 3757
Re: Any suggestions?
« Reply #5 on: Feb 11th, 2005, 3:17pm »
Quote Quote Modify Modify

on Feb 11th, 2005, 2:49pm, Langa wrote:
Clarence can't you get Welder's 02?  You don't need a script for it...

 
It's not that easy in Canada anymore, Lunga.  You have to prove that you are a welder (i.e. show a business license).
 
Casey, try Gravol.  Go to Shopper's Drug Mart and ask the pharmacist for the generic gravol.  It will help you sleep through the night, avoiding REM sleep which is when cluster hits (because of decreased seratonin levels during REM).  It's really helped Mike get through a lot of nights, unattacked.  Your increased breathing rate could be all part of the attack, your body is panicking, maybe.  I don't know, just a guess. It sounds like your cycle is peaking, with the increased number of hits, so that could explain the sudden change. Gravol really does help with the night time terrors though.  Worth a shot.
 
And, for what it's worth, call you neuro again if they won't return your calls!  Become a pain in the ass if you have to but you DESERVE better treatment than that!  
 
« Last Edit: Feb 11th, 2005, 3:19pm by Margi » IP Logged

http://askusaboutourgrandkids.photosite.com/

And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown

IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
floridian
Guest

Email

Re: Any suggestions?
« Reply #6 on: Feb 11th, 2005, 3:45pm »
Quote Quote Modify Modify Remove Remove

According to some research, as many as 80% of us have apnea to some degree.  
 
I did some digging on melatonin and apnea, and it was thoroughly mixed up.  
 
In one article, melatonin was preferred over clonazapam for treating sleep disorders, especially in people with apnea.  http://tinyurl.com/5mqwo
 
IN this article, it was suggested that apnea was associated with excess peak melatonin, or with poorly timed melatonin (2 am is the normal peak).  
http://tinyurl.com/5sav3
 
This article came to the opposite conclusion: there is no relationship between melatonin and obstructive sleep apnea.  
http://tinyurl.com/4m42d
 
Elevated serum melatonin is associated with the nocturnal worsening of asthma: http://tinyurl.com/66o27
 
And the opposite: Melatonin probably plays a role in decreasing airway hyperresponsiveness and airway inflammation of asthmatic rats model.  http://tinyurl.com/5ccc4
 
Do you take quick release or time released Melatonin?   If I were you, I would eliminate melatonin or {cut back on melatonin and only take time released} and see what happens.  
 
These articles could be significant:  
 
Quote:
Am J Respir Crit Care Med. 1996 Mar;153(3):1080-6.  
 
    Obstructive sleep apnea syndrome and circadian rhythms of hormones and cytokines.
 
    Entzian P, Linnemann K, Schlaak M, Zabel P.
 
    Medizinische Klinik, Forschungsinstitut Borstel, Germany.
 
    Several cytokines exhibit a high degree of temporal regulation as well as somnogenic potency (e.g., interleukin-1 [IL-1], tumor necrosis factor-alpha [TNF-alpha]). Seeking the underlying cause of obstructive sleep apnea syndrome (OSAS), we investigated whether circadian rhythms of cytokine release were altered in 10 patients with OSAS. Ten healthy volunteers served as the control population. Seven of the 10 OSAS patients were reexamined after 3 mo of therapy with nasal continuous positive airway pressure (nCPAP) mask ventilation. Circadian cytokine release (IL-1, IL-6, gamma-interferon [gamma-IFN], TNF-alpha) was investigated ex vivo by short-term culture of blood samples. The circadian rhythm of TNF-alpha release was significantly disturbed in OSAS patients: nocturnal physiologic peaks in this cytokine had almost disappeared and an additional daytime peak had developed. Circadian variations in IL-1, IL-6, and gamma-IFN, and in the immunoregulatory hormones melatonin and cortisol, did not differ from those in the controls. Because TNF-alpha is a known modulator of sleep, and nCPAP therapy did not normalize TNF rhythms, we assume that TNF-alpha could well play a pathophysiologic role in OSAS. Further studies should be directed at whether a physiopathologic and/or pathogenic link exists between TNF-alpha and OSAS.

 
Quote:
J Tongji Med Univ. 2000;20(3):200-2.  
 
    The change of interleukin-6 and tumor necrosis factor in patients with obstructive sleep apnea syndrome.
 
    Liu H, Liu J, Xiong S, Shen G, Zhang Z, Xu Y.
 
    Department of Internal Medicine, Tongji Hospital, Tongji Medical University, Wuhan 430030.
 
    The levels of lipopolysaccharide (LPS)-induced interleukin-6 (IL-6) and tumor necrosis factor-alpha (TNF-alpha) expression in culture of peripheral blood mononuclear cells (PBMC) and the plasma levels of IL-6 and TNF-alpha in the patients with obstructive sleep apnea syndrome (OSAS) were measured and the relationship between OSAS and IL-6 or TNF-alpha expression studied. Both IL-6 and TNF-alpha were detected by using ELISA in 22 patients with OSAS and 16 normal controls. The levels of LPS-induced IL-6 (787.82 +/- 151.97 pg/ml) and TNF-alpha (4165.45 +/- 1501.43 pg/ml) expression in the supernatant of the culture of PBMC and plasma level of IL-6 (50.67 +/- 4.70 pg/ml) and TNF-alpha (299.09 +/- 43.57 pg/ml) in the patients with OSAS were significantly higher than those in the normal controls (in the supernatant of the culture of PBMC: 562.69 +/- 197.54 pg/ml and 1596.25 +/- 403.08 pg/ml respectively; in the plasma; 12.69 +/- 2.75 pg/ml and 101.88 +/- 21.27 pg/ml respectively). There were significantly positive correlation between the levels of IL-6 and TNF-alpha and the percentage of time of apnea and hyponea, as well as the percentage of time spending at SaO2 below 90% in the total sleep time. It was concluded that LPS-induced IL-6 and TNF-alpha levels as well as plasma IL-6 and TNF-alpha levels in the patients with OSAS were up-regulated, which may be associated with the pathogenesis of OSAS.

 
Several other studies came to similar conclusions. They are claiming that immune hormones (TNF, IL-6 ) are too high in apnea while other immune hormones (IL-10) are too low.   This is something that an anti-inflammatory might be good at balancing...  prednisone and lithium for the prescription minded, or green tea and turmeric/curcumin for the OTC crowd.
« Last Edit: Feb 11th, 2005, 4:11pm by floridian » IP Logged
Jeepgun
CH.com Alumnus
New Board Hall of Famer
USA 
*****




BOHICA!!!

   
Email

Gender: male
Posts: 3840
Re: Any suggestions?
« Reply #7 on: Feb 11th, 2005, 4:06pm »
Quote Quote Modify Modify

Thanks for the info, Floridian. Enlightening, as always.
 
Clarence, I hope you are able to find some avenue of relief, whether it be through OTC meds, a sleep lab, or actually being able to score a tank of O2.
 
Hang tough, Pal.
 
-Frank
IP Logged

Her: "Have you ever hit a deer?"
Me: "What, like, in the FACE?"
Her: ..... "WHAT is the MATTER with you!?"
clarence
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Wake up

    nailinmyeye
WWW Email

Gender: male
Posts: 1020
Re: Any suggestions?
« Reply #8 on: Feb 11th, 2005, 5:27pm »
Quote Quote Modify Modify

Everybody, thank you for your responses.  I really appreciate you all.  I think that floridian's suggestion to cut out or back on the melatonin makes sense.   Floridian, thanks for the great info and reasearch.  I don't know if it is timed release or not.  It does say on the bottle however not to take with blood pressure medication.
 
Bikerbob brings up a good point as well.  I just recently went up to 480 (from 300) on the Verap, and have noticed that at times I get dizzy when I stand up and whatnot.    I'll get the BP checked.  My hits are still breaking through, and my cycle has gone on for much longer than normal, maybe the verapamil is doing more harm than good.  I really don't know anymore.
 
I will check out the Gravol option as well.
 
Thanks again everybody.  I don't know what I would do without you.
 
Casey
IP Logged

NY Yankees Suck!!!

"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson

Where I live: http://rainfallsoneveryone.com
Jeepgun
CH.com Alumnus
New Board Hall of Famer
USA 
*****




BOHICA!!!

   
Email

Gender: male
Posts: 3840
Re: Any suggestions?
« Reply #9 on: Feb 11th, 2005, 11:03pm »
Quote Quote Modify Modify

Until I hit the Verapamil and Imitrex on my last cycle, my cycles were always 6-8 weeks in duration, and the hits were 20-40 minutes a piece.
 
With the Imitrex and Verapamil, my cycle stretched out to 13 weeks, and the hits would last 40-60 minutes a piece.
 
This next cycle, if/when it comes, I'm going "bare knuckles." I went eight years with nothing but worthless sinus medications. To hell with all of it. I'd rather go through it and get done with it ASAP.
 
-Frank
IP Logged

Her: "Have you ever hit a deer?"
Me: "What, like, in the FACE?"
Her: ..... "WHAT is the MATTER with you!?"
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
USA 
*****




If I can do it, it ain't art.

6108764393 6108764393   Randy   Piscatorus
WWW Email

Gender: male
Posts: 2217
Re: Any suggestions?
« Reply #10 on: Feb 11th, 2005, 11:25pm »
Quote Quote Modify Modify

on Feb 11th, 2005, 11:03pm, Frank_W wrote:
To hell with all of it. I'd rather go through it and get done with it ASAP.

I _knew_ this place was a mistake and a waste of time, except for whining on a bad day.
 
If only I'd done Vibes,
RJ
IP Logged

May those who don't want any
Have memories of never getting any.
Jeepgun
CH.com Alumnus
New Board Hall of Famer
USA 
*****




BOHICA!!!

   
Email

Gender: male
Posts: 3840
Re: Any suggestions?
« Reply #11 on: Feb 11th, 2005, 11:30pm »
Quote Quote Modify Modify

LMAO, Hap. If/when my next cycle comes around, no whining, here. I'm sure someone else is hurting worse or hurting longer than I am. The storm always passes, and I'm thirsty anyway, so let it rain. Smiley
 
-Frank
IP Logged

Her: "Have you ever hit a deer?"
Me: "What, like, in the FACE?"
Her: ..... "WHAT is the MATTER with you!?"
BarbaraD
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Hugs to ya

   
Email

Gender: female
Posts: 5164
Re: Any suggestions?
« Reply #12 on: Feb 12th, 2005, 8:49am »
Quote Quote Modify Modify

C,
 
My neuro put me on Nadol for BP. It caused a new set of problems including my heart rate going down to 48. Now I have vertigo and can't get rid of it. I quit taking it and my BP has gone back to normal (it's normally low except when I'm getting hit so I'm still wondering why he put me on the Nadol).  
 
I take the melatonin at night (9mg) and have learned that when I get a "small" hit in the middle of the night to GET OUT OF BED and get some O2. I usually get the stirrings at about 4 a.m.  I've just learned to get up at 4 a.m. I can usually abort the HA before it gets too bad, but I can not go back to bed or I'll get hit with a big one every time.  
 
Take your blood pressure and check your heart rate regularly. This could be the cause of some of your problems.  
 
Make a pest of yourself at the neuro until you get the O2. Go to his office unannounced if that's what it takes. Better yet, go to his office when you think you're going to get hit and have the CH right there in his waiting room. That should get his attention real quick. You only have to do it once and after that they're a lot better about having him call you back. Just mention the word CH!  
 
The sleep apnea should be checked, but it sounds like you need to get off the verap.  
 
Hugs BD
IP Logged

What don't kill ya, Makes ya stonger!

Pages: 1  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print

« Previous topic | Next topic »


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.


©1998-2010 Web Vision Enterprises All rights reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

test rss