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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Any suggestions?
        
(Message started by: clarence on Feb 11^th, 2005, 2:09pm)

Title: Any suggestions?
Post by clarence on Feb 11^th, 2005, 2:09pm

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

Title: Re: Any suggestions?
Post by E-Double on Feb 11^th, 2005, 2:20pm

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.

Title: Re: Any suggestions?
Post by nani on Feb 11^th, 2005, 2:26pm

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

Title: Re: Any suggestions?
Post by Langa on Feb 11^th, 2005, 2:49pm

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

Langa

Title: Re: Any suggestions?
Post by BikerBob on Feb 11^th, 2005, 2:51pm

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

Title: Re: Any suggestions?
Post by Margi on Feb 11^th, 2005, 3:17pm

on 02/11/05 at 14:49:26, 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!

Title: Re: Any suggestions?
Post by floridian on Feb 11^th, 2005, 3:45pm

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.

Title: Re: Any suggestions?
Post by Frank_W on Feb 11^th, 2005, 4:06pm

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

Title: Re: Any suggestions?
Post by clarence on Feb 11^th, 2005, 5:27pm

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

Title: Re: Any suggestions?
Post by Frank_W on Feb 11^th, 2005, 11:03pm

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

Title: Re: Any suggestions?
Post by Mr. Happy on Feb 11^th, 2005, 11:25pm

on 02/11/05 at 23:03:16, 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

Title: Re: Any suggestions?
Post by Frank_W on Feb 11^th, 2005, 11:30pm

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. :)

-Frank

Title: Re: Any suggestions?
Post by BarbaraD on Feb 12^th, 2005, 8:49am

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