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plazticsoul
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6 months of weirdness
« on: Oct 4th, 2004, 10:37pm » |
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I seem to be going on 6 months now, on what seems to be an almost constant attack, from morning till night. Not typical of many sufferers, I know. I can only imagine that people have more extreme attacks of shorter duration, because I doubt I could survive 6 months of a constant "kip10", as I keep hearing of.
This pain is behind my right eye most of the time, and it causes orbital pain. But sometimes the pain will shift to under my right eyebrow and it feels like something is trying to break out of my skull. It's also not uncommon for this pain to switch over to my left eye. I have trouble keeping my eyes open sometimes and looking upward. I notice the orbital pain increases with neck movements.
I'm also getting anxiety attacks. Going to an unfamiliar public place will totally mess up my vision and I feel "bug-eyed". However if I keep a cellphone handy or go with a close friend this will solve the problem, most times. It's funny because I am normally pretty outgoing and friendly.
Now all of the sudden, my back and neck are tightening. I didn't really have that until just a few days ago.
I have never responded with much success to prednisone. I've been on Verapamil and Topamax for a couple months. Topamax seems to make me loopy enough to "cope" with the pain better, but that's about it. Oxygen therapy only seems to help WHILE I'm breathing it. Hot baths will seem to help but only while I'm soaking in them.
I guess next month I'll have a second MRI done. I seriously doubt they'll find anything new, though.
Do I have some weird chronic case of clusters because I have no leads to go on. They've ruled out everything. I feel silly because you people talk about "aborting" attacks. So that means many of you actually get some relief during some part of the day?
I feel so stupid, lost, and confused 
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thebbz
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Re: 6 months of weirdness
« Reply #1 on: Oct 4th, 2004, 11:41pm » |
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Stupid ,lost, confused..thats my job. Really I abort mine with the trex inj. Sorry about your battle. All other prevents fail for me. I get the prednipoision. Only thing that has worked after 25 years with the demon. Intend on something new this time. Six months is a battle. Been there ,it sucks but you can do it.....maybe see a neuro again, changes indicate another look.
Keep on keepin on. 
BB
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nani
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Re: 6 months of weirdness
« Reply #2 on: Oct 5th, 2004, 12:09am » |
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 I kinda know what you mean. I'm a chronic and it often feels like I get no PF time. When I'm able to get kind of objective and really think about it I probably have about 6 kip 5 a day with constant kip3 shadows. sorry you're going through this...
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plazticsoul
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Re: 6 months of weirdness
« Reply #3 on: Oct 5th, 2004, 7:05am » |
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Thanks. Has anyone had success with xanax or lithium? I really want to get off of the Topamax. It doesn't seem to be doing enough for me, and ever since I've been on it I have had uncontrollable acne  and the thought of kidney stones is scarey 
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nani
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Re: 6 months of weirdness
« Reply #4 on: Oct 5th, 2004, 9:25am » |
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You may want to discuss Neurontin with your doctor. It's an anti convulsant like the Topamx, but seems to be better tolerated and has less side effects. I've not tried lithium or xanax. Isn't xanax anti anxiety?
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toolong
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Re: 6 months of weirdness
« Reply #5 on: Oct 5th, 2004, 10:05am » |
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If you think you Dr.isn't understanding your pain then he probally isn't.You might try a different DR.(Nero.)Your pain is like mine except mine starts on the left and follows the same course as yours,but stays left.I've tried 6 doctors in the last 5 1/2 years and learned more here than the $ spent with them.Do your own research,then make educated suggestions to your doc.Only you can feel the pain and only you will know what works.Good luck.  David
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plazticsoul
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Re: 6 months of weirdness
« Reply #6 on: Oct 5th, 2004, 2:55pm » |
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on Oct 5th, 2004, 9:25am, nani wrote:| You may want to discuss Neurontin with your doctor. It's an anti convulsant like the Topamx, but seems to be better tolerated and has less side effects. I've not tried lithium or xanax. Isn't xanax anti anxiety? |
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Thanks, I will definitely suggest that. And yes Xanax is for anxiety, but unfortunately that seems to have become a new symptom of mine. I think there can be a link between the two, and that one can trigger the other. I know sometimes I'm so worried about how I'm going to feel when I go somewhere in public, it adds stress, and to me it seems logical that worry about pain on the inside manifesting on my outward appearance can make me overly sensitive about my behavior and certainly cause anxiety attacks. What this seems to be is a neurological problem (CH) that's also created a psychological form of anxiety.  So it's probably better to seek other meds to deal with the CH, rather than just the anxiety. But then again I've heard about some other sufferers taking xanax? I also hear Lithium is good for chronics.
My neck is killing me right now more than anything, and that's unusual. I can only hope this beast is draining out of my skull.
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nani
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Re: 6 months of weirdness
« Reply #7 on: Oct 5th, 2004, 4:51pm » |
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Quote:| And yes Xanax is for anxiety, but unfortunately that seems to have become a new symptom of mine. |
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There does seem to be a relation (there's another thread on that somewhere) if nothing else it would be because we go through life dreading another horrifying attack. I also suffer from it, but had it long before the HAs.
Quote:| My neck is killing me right now more than anything |
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I often get HA pain down into my neck, and I'm guessing that, like me, the tension and stress of the chronic pain can get ya all tensed up. Try some massage therapy. I've actually fallen asleep during a kip 4 shadow while getting a much needed massage! 
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plazticsoul
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Re: 6 months of weirdness
« Reply #8 on: Oct 20th, 2004, 7:59am » |
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I saw the doctor's assistant this time. She seems to think my stress/anxiety is a major factor as to why things aren't clearing up. Of course, there is no rhyme or reason to CH's, but in my case, anxiety treatment would be nice as well, since I do seem to now be having panic attacks. So she wrote a prescription for some pill that has both Lithium and an anti-anxiety medication in it. I'm not exactly sure of the name right now. Took it Walgreen's to have the script filled but they didn't have it right then, so I'm picking it up today. I'll let you know what the name of the drug is, and whether it seems to help me or not.
She told me to stay on the Verapamil, and since I've tapered down to 25mg Topamax on my own, stay on that dosage for one more week as this new drug takes effect.
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Charlie
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Re: 6 months of weirdness
« Reply #9 on: Oct 20th, 2004, 4:41pm » |
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Sorry you have to deal with this horror. Stress isn't the reason for clusters to begin. It may be a kind of trigger but that's not always the case. While waiting for drugs and the like, you might look into this technique that worked well for me:
Dr. Wright’s Circulatory Technique:
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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Tom
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Re: 6 months of weirdness
« Reply #10 on: Oct 20th, 2004, 6:55pm » |
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Only an idea:
http://www.ninds.nih.gov/health_and_medical/disorders/hemicrania_continu a.htm
What is Hemicrania Continua?
Hemicrania continua is a rare form of chronic headache marked by continuous pain on one side of the face that varies in severity. Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain. Symptoms fall into two main categories: autonomic, including runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. The disorder has two forms: continuous, with daily headaches, and remitting, where headaches may occur for as long as 6 months and are followed by a pain-free period of weeks to months until they recur. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.
Is there any treatment?
Indomethacin, a non-steroidal anti-inflammatory drug (NSAID), usually provides rapid relief from symptoms. Other NSAIDs, including ibuprofen, celecoxib, and naproxen, can provide some relief from symptoms. Amitriptyline and other tricyclic antidepressants are effective in some patients.
What is the prognosis?
Patients may obtain complete to near-complete relief of symptoms with proper medical attention and daily medication. Some patients may not be able to tolerate long-term use of indomethacin and may have to rely on less effective NSAIDs.
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further information about Hemicrania continua:
http://www.upstate.edu/neurology/haas/hphemi.htm
http://www.blackwell-synergy.com/links/doi/10.1111%2Fj.1526-4610.2004.04 141.x
http://www.headachedrugs.com/archives/hemi_continua.html
Thomas
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plazticsoul
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Re: 6 months of weirdness
« Reply #11 on: Oct 20th, 2004, 7:11pm » |
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I dunno. Doesn't seem like what I've got. But thanks for the input. 
BTW the drug I'm trying now is "Limbitrol".
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thudpucker
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Re: 6 months of weirdness
« Reply #12 on: Oct 20th, 2004, 7:53pm » |
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Disclaimer: I am not a doctor.
My doc gave me a couple of Xanax to help me deal with the MRI--I don't do well when confined in small spaces. Research on Xanax showed that it acts much like alcohol, which made me wonder whether it might trigger a headache. Ultimately, I decided to tough it out with the MRI cold turkey, so I don't know whether Xanax might have been good or bad (and I sure as heck wouldn't have wanted to get a headache while confined on my back in the MRI tube).
I also wonder, if tightness in your neck is a major symptom, whether a muscle relaxant such as Flexeril might provide some relief.
Just my 2 cents' worth as well.
thudpucker
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plazticsoul
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Re: 6 months of weirdness
« Reply #13 on: Oct 20th, 2004, 8:08pm » |
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Well, the neck/shoulder stiffness could be a symptom, or it could just be stress caused by other pain. The eye pain I have learned to deal with, but I've been having recent panic attacks and this is making me anti-social. SO I'm hoping this new drug will help "undo" some of this tension I'm experiencing and maybe, just maybe, everything else will go away too. I don't care if it comes back, but just to get a break from it would be wonderful. Just to know it CAN go away!!!
If I find it to be a trigger that causes more pain, of course I'll stop taking it
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| « Last Edit: Oct 20th, 2004, 8:11pm by plazticsoul » |
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