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Topic: I think I have it figured out! (Read 1226 times) |
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brilmont
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I think I have it figured out!
« on: Mar 24th, 2008, 5:37am » |
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I have SUNCT syndrome, a from of CH. Self diagnosed because the doctor's won't listen. My most common triggers are: standing up after lying or sitting, bending over, neck held back (looking up), doing something strenuous, anger, fear, taking a shower and sinus trouble. My pains have gotten progressively worse over the last 20 years. The last 4-5 months have been especially bad. Almost every day, all day. I've gained over 20 pounds cause I was afraid to make any sudden moves for fear of an attack. I could't work or clean my house, and my husband has had to take on most of my chores. I was crying almost daily UNTIL...
On March 15th I found this message board. I don't know why I didn't find it sooner. Wish I did because the Red Bull lots of you suggested was a God's send. I couldn't believe it! I had to know WHY does Red Bull work and I've spent countless hours ever since onresearching why.
First we have to understand these two functions--
Vasoconstriction: a narrowing of the blood vessels resulting from contracting of the muscular wall of the vessels. When blood vessels constrict, the flow of blood is restricted or slowed resulting in an increase of the blood pressure.
Vasodiolation: opposite of vasoconstriction; a result of relaxation in smooth muscle surrounding the blood vessels. This relaxation, in turn, relies on removing the stimulus for contraction and causes dilation of arterial blood vessels (mainly arterioles) and leads to a decrease in blood pressure.
I believe that, for most of us, our problem is low blood pressure (HYPOTENSION). Our bodies inablility to raise our blood pressure in a timely manner when it's necessary (during the trigger moments).
Medications that cause vasoconstriction (higher blood pressure) include antihistamines, decongestants, cough and cold combinations, pseudoephedrine, and caffeine. These are called vasoconstrictors or vasopressors.
That's why Red Bull works. It's a vasopressor. The caffeine is what works, not the Taurine.
When my mom died in December I had a pain free week. I thought maybe because I left my old pillow at a friends and had to use a different one that the old pillow was the problem: or maybe I was so tired each night that I didn't have a chance to turn and sleep on my back: or that I cried so much that bad toxins had drained my head through the tears and mucous. Like all of you...always grasping for an answer. Well, here's what it was! I just figured it out! I felt myself coming down with a cold or flu and knew I couldn't afford to let it get me at this time of turmoil and took a big swig of NYQUIL each night before going to bed as a preventative measure. Nyquil is a vasopressor.
I'm overweight so one of my doctors prescribed Lisinopril about 2 years ago. Not because I have high blood pressure but so that I don't get it. Another prescribed an asprin per day to avoid any heart troubles. Two of the worse headache years of my life! Both of these are vasodiolators causing lower blood pressure. I stopped taking them last week and my headaches have decreased by about 70%. I still keep Red Bull in the fridge for when the other 30% get out of hand.
The following webpages are extremely informative. Substitute "headache" with dizziness, faintness or lightheadedness when reading and it will all make sense.
http://en.wikipedia.org/wiki/Hypotension
http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html
http://www.aafp.org/afp/20031215/2393.html
Now to find out why the low blood pressure is happening. I have a new list of things for the doctors to check including the oxygen suggestions.
Oh, and I'm curious...how many of you sleep with the TV on?
Thanks for this great message board and for suggesting Red Bull. You've saved my life. THANK YOU, THANK YOU!
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Kevin_M
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Re: I think I have it figured out!
« Reply #1 on: Mar 24th, 2008, 7:10am » |
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You haven't mentioned if these headaches are unilateral or if any autonomic symptoms.
Consulting your doctor about this while taking Lisinopril or if discontinuing should be noteworthy.
I've read some get an elevated b/p during or when it is known a CH hit is approaching, but it doesn't seem to help any with aborting an attack.
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| « Last Edit: Mar 24th, 2008, 7:19am by Kevin_M » |
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beachmusic
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Re: I think I have it figured out!
« Reply #2 on: Mar 24th, 2008, 7:52am » |
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Hi Brilmont, 
I especially want to send you a big hug and tell you how sorry I am over the loss of your Mother!!! I lost my father in 07 and never ever think I will get over it. (Yep, daddy's girl here)
Now I am losing my Mom too! Again I am so sorry for your loss!!!
There are many similarities in our stories but I find the BP thing fascinating. As well as the crying thing. I have had have mild high bp but due to the topamax I feel like I am bottomed out and always on the verge of fainting. Would love to stop the bp meds.
I got my first cluster in 2003 and thought for sure would go into another cycle due to stress/crying over losing my dad and most certainly all my mom's health problems. But nope. Well atleast not until jan 08.
Now I have no option but to pack for that final goodbye/funeral/eulogy so maybe there is a key to the crying because I believe my present cycle is winding down. That or it is that flight or fight thingie. Which btw is related to our hypothalumus also.
Well we are all glad to see a cycle end thats for sure 
Good luck and God Bless.
Mary Ann
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| « Last Edit: Mar 24th, 2008, 8:20am by beachmusic » |
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Mybelle
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Cluster what?
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Re: I think I have it figured out!
« Reply #3 on: Mar 24th, 2008, 5:00pm » |
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Well now I'm totally confused - is it the Taurine that must be in the drink or the caffeine? or both? Because too much caffeine can keep you up at night throwing off your circadian rhythm even more -even with a melatonin, so what's the deal? 
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EstieSA
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Re: I think I have it figured out!
« Reply #4 on: Mar 24th, 2008, 5:07pm » |
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on Mar 24th, 2008, 5:37am, brilmont wrote:Oh, and I'm curious...how many of you sleep with the TV on?
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Puts up hand slowly while looking around...
"Me , why?"
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Guiseppi
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Re: I think I have it figured out!
« Reply #5 on: Mar 24th, 2008, 5:28pm » |
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First off I'm really glad you have found something that's helping YOU. That's first and foremost, the goal of this board. Now a whole bunch of words of warning.
You should try to get a neuro to confirm your diagnosis, as frustrating as it can be to get all of the necessary consults and tests done, you're always better off working with a medical professional.
As far as most of us dealing with low blood pressure, an untrue statement based on the many people I know on the board. Our blood pressures tend to sky rocket DURING a hit, the rest of the time we're all over the board with highs, lows and in betweens.
For CLUSTER HEADACHE sufferers, the combination of caffeine and taurine is far more effective then just caffeine. The taurine puts the caffeine to work much faster the if it was caffein alone. for CLUSTER HEADACHE sufferers, speed is of the essence, minutes can spell the difference between a KIP 3 and a KIP7.
I went on aspirin therapy for about 2 years and it had no effect, positive or negative, on my CH cycles. One of the wiser research types will be along to discuss the cold medicine before bed trick. Many with CH use that one, I don't recall why but someone explained how it helps you avoid the night time attacks. The same reason many take melatonin to avoid the nite time hits.
Welcome to the board, I hope we can help you some more. Be really careful when quickly associating cause and effect with this condition. It morphs very quickly and you're never sure if it was a life style/med change or he just morphed again!
Guiseppi
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Superdave
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Re: I think I have it figured out!
« Reply #6 on: Mar 24th, 2008, 6:05pm » |
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Hi Brilmont!
Thank you for your contribution, all the info we can get the better
Superdave
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Wow! you mean it's just in my head?
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LeLimey
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Re: I think I have it figured out!
« Reply #7 on: Mar 24th, 2008, 6:36pm » |
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I find it very interesting as I too have extremely low BP mine is 90/50 at the doctors but if taken after sitting for a while can be 78/40 easily.
Interestingly one of the most used preventative meds for CH is a BP med, Verapamil. I don't think there are any easy answers. One of the worst things about CH is that what works for one fails another. Absolutely no med we use is 100% effective so it stands to reason that different theories can work for different groups of us too.
The BP angle certainly bears more thinking about to me so thank you
Oh and welcome! I'm glad you've finally started posting.
Helen
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Annette
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Re: I think I have it figured out!
« Reply #8 on: Mar 24th, 2008, 6:45pm » |
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I think I have it figured out!
Yeah, me too, many times ... until the beast throws a curve ball and send me back to the drawing board.
Its good though to keep thinking and analysing, it helps with the understanding of the condition, if not for everyone else, at least for your own so that you can fight it better.
Kudos to you and painfree wishes.
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superhawk2300
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Re: I think I have it figured out!
« Reply #9 on: Mar 24th, 2008, 8:48pm » |
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Generally speaking, as far as body function, I am pretty healthy, with perfect blood pressure.
That being said when I am in cycle a suppliment I take always brings on a HUGE hit. The suppliment is a vasculardialator, which makes the blood vessels get bigger and thus increasing blood flow to the mucsles being worked.
Now THAT being said, I have been on and off that suppliment for years, and being on it doesn't seem to bring me into a cycle; only makes me have a hit when I am in cycle. My remission time between cycles has shortened the last 3 cycles so maybe there is a long term effect but I dunno.
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