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Cluster Headache Help and Support >> Getting to Know Ya >> I don't know what is going on, I hope you do. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1270150308 Message started by Loosenuts on Apr 1st, 2010 at 3:31pm |
Title: I don't know what is going on, I hope you do. Post by Loosenuts on Apr 1st, 2010 at 3:31pm
Hello everyone,
I have an interesting case (I think, but hope not) and hope someone out there can help me understand it. To date my neurologist and GP have no idea what is going on. I will try to keep this as short as possible so you do not have to read too much. 6 weeks ago on February 18th, I experienced the most god awful headache. It sent pain down my neck, in my head, my face, you name it. Since that very moment I have had a headache at ALL times that hovers between 2-4 on the Kip scale. I cannot escape it and it is driving me insane, it has taken over my thought and any distraction from it is like a godsend. Coupled with the constant headache, I get shadows frequently (little rushes of 4-5 on the kip scale that last 1 second to 1 minute) and I get what I call spikes at normal intervals in the day and night. The spikes register a 6-8 on the kip scale and last 30 minutes to 2 hours. They were coming every day at 11am, 8pm, and 330 am (waking me and keeping me awake). I went to the doctor and eventually made it to a neurologist. His current diagnosis is a migraine/cluster mix. I have been to ER twice, and have been given handfuls of medication (midrin, diclofen, hydrocodone, sumatriptan, verapamil, lithium, diladid, and some other stuff). I now take verapamil 80mg 3 times a day and 150mg of Lithium at night. Since taking the verapamil my spikes have reduced to a 5 on the kip scale, but they are still there and I feel I am not making any headwind on resolving this (after reading the post, I know I may never resolve it). I have read many post on this site and obviously would not be writing unless I needed some help. I am a very strong person, but this is beating me down and it is very depressing, as I am sure you all know. Except for the very first night, I have not had the level 10 kip scale. This makes me wonder if what I have is cluster headaches or not. Are there levels of it, phases of it, do I have a combo, am I in the honeymoon phase and getting ready for major attacks? These are question I ask myself repeatedly. The constant pain is predominantly in the right side right behind the temple and above the ear. I call it head pain rather a headache. It does move around some to the top of my head and sometimes to the left, but mostly remains on the right. To further complicate this I had an MRI that revealed I have a birth defect. I am missing my left internal carotid artery. Blood moves through my brain "sluggishly" in the neurologist words. I do not know how this affects headaches and have made 31 years so far with no issues until now. So, in summary: I have a constant headache at all times 2-4, I get spikes that were 6-8 but are now 5's since taking verapamil. I also am missing a carotid artery and have sluggish blood flow through my brain. The artery piece aside, has anyone heard of the type of headaches I am experiencing? I know this site is not for diagnosis, I just hope someone can point me in the right direction or inform me that I am in the right place. I think the folks on this site are incredible, whether or not I am a clusterhead, I am suffering and am looking for guidance. I appreciate any help this community can offer. Thanks, Ryan |
Title: Re: I don't know what is going on, I hope you do. Post by Sandy_C on Apr 1st, 2010 at 3:43pm
Hi Ryan, and welcome.
As you said, we are not doctors and cannot diagnose. There are many different types of headaches, including mixes with CH. If both your GP and your neuro aren't sure of what's going on with you, I would ask both of them to refer you to a headache specialist who is well conversant with CH. There are also many different medications out there that work for one type of headache but not for another, so it's important to try to nail this down. I would also recommend that you keep a very detailed diary of your headache patterns. When does it start, when does it ramp up, how high is the pain, how long does that high pain last until it starts ramping down again, what did you eat, drink, did you sleep, etc. EVERYTHING. A detailed diary of what is going on with you is a great tool for your doctors to help figure this thing out. Others with much more knowledge than I will be along shortly and can possibly give you better guidance than I can. Just remember, hang tough. We're here - always. Feel free to ask questions all you like, and read the information on the left of your screen. It's invaluable. Sandy |
Title: Re: I don't know what is going on, I hope you do. Post by Loosenuts on Apr 1st, 2010 at 6:55pm
Much thanks for the replies and info! I definitely have more to learn.
I may have misstated something by saying my nuero and GP have no idea what is going on...they are after all the ones that suggested cluster and got me into investigating this. I also want to add: I was put on prednisone fairly early on then tapered off as the verapamil took hold. I do think this helped the severity of the spikes. The reason I am on such a low dose of verapamil is because of the missing artery and the effects verapamil has on BP (or so I am told). I had a bad reaction to the verapamil at the beginning and was in ER because of it. So we are being cautious. The plan is to taper the verapamil down and ramp the lithium. -Ryan |
Title: Re: I don't know what is going on, I hope you do. Post by Dallas Denny 62 on Apr 1st, 2010 at 7:03pm
Hey Ryan!!
Welcome to the board...sorry you needed to find us though!! You didn't mention O2 in your post....if you don't already have it get the info on the O2 on the left and hit your docs up for a script ASAP....it's been a lifesaver for me and many others on the board!! Dallas Denny |
Title: Re: I don't know what is going on, I hope you do. Post by vietvet2tours on Apr 2nd, 2010 at 2:40pm
You're missing two carotid arteries?
Potter |
Title: Re: I don't know what is going on, I hope you do. Post by Loosenuts on Apr 2nd, 2010 at 5:42pm
I am missing my left internal carotid artery. For those that may not know (I sure didn’t until last week) your carotid arteries in your neck split around the jaw line. At that point you have an 2 external carotid arteries that feed the scalp and muscles. You also get 2 internal carotid arteries (ICA's) that straight shot to the Circle of Willis. The Circle of Willis is an artery (or group of arteries) that form a circle in the center of your brain. The ICA is about 3/5's or 2/3's of the blood flow of the carotid artery.
Apparently blood moves sluggish through my brain. Now I know why! I get another MRI next Friday with die, so we can see how it is that blood flows to my brain. Once I can understand the artery issue, I can then get more aggressive on medications and treatments for these head pains (assuming the two topics are unrelated). I hear CH’s are vascular, I do wonder if the two issues play off each other. My biggest fear is that my funky blood flow system is compromised now and starting to give me issues (ie the constant headache). Perhaps the Marine Corps and backpacking were not the best thing for a 1 artery set-up. Apparently missing an ICA is extremely rare and even rarer if born without. Most cases are from severe trauma. Maybe more than what you asked for, but it feels good to talk about without hearing....."can't they just replace your artery (not realizing I'd have to have my cranium cracked open) and that should also fix your migraine, which I am sure you got because your eyes need a check up, you play that video game too long, your drank too much, and spring started early" -Ryan |
Title: Re: I don't know what is going on, I hope you do. Post by Brew on Apr 5th, 2010 at 7:58am
Hopefully your MRI will be with dye - not die. ;)
|
Title: Re: I don't know what is going on, I hope you do. Post by neuropath on Apr 5th, 2010 at 9:39am
Hi Ryan,
Aside from the fact that you are dealing with an artery anomaly that will require a particularly specialised and cautious approach to diagnosis and treatment, CH can and generally does take years to crystalize into its trademark symptoms. While some of your symptoms are reminiscent of CH (while others are not), they could be any of a dozen and then some headache conditions other than CH at this point. Take your MRI results and a very detailed diary of your symptoms, triggers and attacks and look for a true headache specialist from the reference list that Bob posted. |
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