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Title: For those who get hit every 2 hours, MJ, Star, ? Post by Charlotte on Sep 20th, 2006, 3:18pm I have a neuro follow-up 10-5. The odds are 50/50 I will have a visual aid since I have 60 minutes pf & 66 minutes whatever this is - almost 50/50. I was not extrememly impressed w/neuro & he hasn't been very helpful. He said I have elements of ch & cph but do not have that, or migraine. That sort of makes sense because as soon as I passed up every 3 hours, the beast morphed onward. I've never had hits before at every 2 hours. In 2002, I had 8 to 12 weeks of every hour & a cacophony of mixed vascular headaches, and then back to 1 or 2 a day & the long cycle began again. I'm such a wimp. More than 1 neurontin at a time makes me so dizzy I can't work. I'm up to 7 a day, but 1 at a time. I also use Indomethacin & liquid kudzu extract. I dred seeing the neuro again. I don't expect any help and I don't see what his conclusion can be, but the fact that he said anything at all helped my doc & the doc has really been there for me, backing me up with the 1 at a time thing if it works for me. I still don't have anything that prevents, but the neurontin is a nerve deadener & that helps make it bearable, even though ha still occurs. I have been getting hit every 2 hours or so for 9 months. This is the longest & wierdest pattern ever. Has anyone had this type of cycle, and did anything work for you, and what did the neuro & doc call it? I so want a remission. My personality has changed, like we mentioned in the thread to Annette, and people have been commenting on my behavior, but not to the point where I will lose my job, and actually the response has been of a helpful nature. Thanks guys. I'm not even sure what I'm asking, but thanks, anyway. Charlotte |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by unsolved1 on Sep 20th, 2006, 5:24pm I can handle 1 or 2 major hits per day. But when it starts attacking me every couple of hours, I head for steroids to break up the pattern. I Have you tried busting that pattern with a big dose of steroids? ( maybe 500mg of Solu Medrol ) ?? Goodluck UNsolved PS. I'm kinna in the same boat as you right now. Getting attacks every couple of hours unless I hit the steroids (which I'm doing again now) and I'm headed to see Dr. Diamond 10/4 ... but not expecting results :-/ |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by Sandy_C on Sep 20th, 2006, 5:29pm I don't know what to say Charlotte, other than definitely keep your neuro appointment and see what he says now. With the possibility of having CH and/or CPH, and/or migraine, and/or something else, ask for a second opinion with another neuro or headache specialist. Have you looked into getting oxygen to use as an abortive? Melatonin taken before bed?, many people have had some success taking Kudzu - available in health food stores and some grocery stores. Again, I'm sorry that I can't offer you more information than this. Keep us posted. Sandy |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by kcopelin on Sep 20th, 2006, 8:24pm Charlotte, This truly sucks my friend. I am curious, have you tried prednisone to break the cycle? There are side effects but with the hell you're going through would be worth it. And it really might work on all the various flavors of headaches you have. Please see the neuro-I understand the "dred" part-am the crazy woman who went in demanding that they trigger a hit so the SOBs could see it-but they have the most training (not much) and you may luck out and get someone good. I did last time-thus didn't have to have hit triggered. Hang in there Char! praying you get a break, kathy |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by BB on Sep 20th, 2006, 9:08pm Dearest Charlotte, Big hugs to you first of all. Its dreadful to see anyone getting hit let alone so frequently. The others have suggested Prednisone and Oxygen and I think its a brilliant idea. They are safe enough to take for a short while to see how much they help and they dont interact with your other meds. Also have you tried Lyrica instead of Neurontin, they are both for nerve pain but the literature seems to say that Lyrica works better and quicker than Neurontin. DH is on Lyrica and it does help the pain a fair bit although it doesnt stop the hits from comming, but the pain intensity is a lot less. I have many patients on Neurontin for different types of nerve pain from prolapsed spinal discs to diabetic neuropathy and they dont seem to work that well, ie my patients still complain of pain. Sending you lots of love, hugs and painfree wishes. Hope it breaks real soon for you. Annette |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by starlight on Sep 20th, 2006, 9:19pm Charlotte, I so feel for you...I do usually get hit every two hours at night (sometimes even every hour--not usually--but oh boy is that fun) with the exception being that for about a week AFTER my period (sorry guys close your ears) they dwindle to less 3, or 2, or 1 and a few free nights....then they ramp back up again. O2 and melatonin are my friends and they are helping but I have had only a taste of the maddening nature of this kind of frequency. With your getting hit every 2 hours around the clock, this is a LOT to handle. There is something going on here. Not trying to be critical of your neuro, BUT his saying that there are elements of cluster and CPH yet not being either is how do I put this...not a satisfactory diagnosis. Because it is like a double negative--"you have two things kind of...yet they are neither"--not good enough. Not good enough when you are getting hit every 2 hours around the clock. It is good that your meds are helping but after 9 months a preventive along with a sound diagnosis would be GOOD. Would be progress. I see that you live in California. Maybe with the help of your doctor could you seek out a headache clinic? My doc has mentioned the Michigan Headache Clinic as being really really good--that is far from you though. There has to be somewhere closer to you, much closer. Although with this going on for 9 mos straight I wish you could get there. Does anyone on here know of a GOOD headache clinic closer to Charlotte? Charlotte I just feel like you could benefit so much from a good diagnosis. Certainly you may very well have 2 different types of HAs going on BUT you need a definitive statement not wishy washy. I am going to google HA clinics. Please hang in there. Love, Star |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by starlight on Sep 20th, 2006, 9:27pm Charlotte!!! I just googled--check this out--The California Headache and Balance Center in Fresno, California--the first thing it said was "this is the only headache clinic in central California that specializes in difficult headaches". (God, I hope you are not already going there and then I will feel like a tool.) But anyway, could you go there?!?! Are you seeing just a regular neuro or headache specialist? Charlotte you definitely are experiencing difficult and complicated headache problem--this place...maybe they there will not be so in the dark about what is going on?! Keep it in mind hon! Love, Star |
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Title: Re: For those who get hit every 2 hours, MJ, Star Post by starlight on Sep 20th, 2006, 11:04pm Charlotte--one other random thought--I don't know if you, you're doc has thought maybe cluster headache variant as being a part of what is going on. I will read more about it, but it seems like cluster headache variant which is its own type of headache but which is cluster headache only complicated--it is a "background vascular headache" with cluster headaches occurring also simultaneously. Throw another headache like PH in the mix and I don't know...they need to figure it out for you. Please let us know how you are, Star |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by Dave_S on Sep 21st, 2006, 12:15am I was 2 hours off two on for 18 months read my tag line for a clue while this was going on. I got botox injections and it lessend my attacks by at least 90 percent I get them every 2 months now I still have CH but at a managable leval I just went 5 days in a row with out any which is great life is a lot better now then when it was every 2 hours and lasted just under 2 hours I asked a doctor for codeine 3 for the in between time so I could be better with my family she laughed at me and walked out I should go back and make her wish she had a ton of herion I guess I am still bitter about that it will get better for you it just takes time. Dave S |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by georgej on Sep 21st, 2006, 1:22am Charlotte, You're one of the finest people I've met here--I appreciate our conversations in PM, and always look forward to hearing from you. Your kind words are always welcome. I'm so sorry to hear you're getting nailed this way. Good suggestions from many of the folks here, particularly the thoughts about seeing someone else and trying something else. Obviously what's been tried so far is not working well. I'm afraid that I don't have much to offer besides my very best wishes and hopes that things improve for you soon. I don't know much about meds or about treatment options, but I do know that you are a good friend, and I feel badly for you. Best always, George |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by MJ on Sep 21st, 2006, 2:39am Doesnt sound fun Charlotte. Yes I have had a few cycles last as long as 3 years with symptoms all over the place, those times I was heavily medicated. Other similar cycles without medication were clean and very much easier to deal with mentally. A couple questions: How long have you been using neurontin and what dosage? Were your previous cycles more defined in any way and did you use the same meds then? The reason I ask is that neurontin can cause all kinds of other issues including headaches as well as dizziness as you stated. I think neurontin (gabapentin) is not really so much a nerve drug as it is a phsyce drug that has been thrown at everything out there when it comes to bad pain. I have seen its results on another first hand and it may help with one thing but will cause other things over a very short time including strong personality changes. I am sure that any change or shakeup in medications for my CH only increases the duration and intensity of the cycles. When I combined drugs long ago it was even worse. My personal opinion is that if a drug doesnt get rid of the CH in a short time why bother continuing it. I actually tried immitrex for 6 weeks straight once with as many as 8 shots a day silly me it never did a damn thing for me, except give me more headaches to fill in the small voids between the full hits. While sucking up oxygen like there wouldnt be a tommorrow, that did nothing either. The oxygen did however help me learn to relax a bit because I had to sit still. Some of the confusion on your headaches may be that they are partially medicinally triggered and it would then be hard to properly diagnose in combination with CH. Even a good neuro may have difficulty. I am not saying this is the case with you just a thought. I recomend looking very closely at your meds but dont just stop them. Maybe you could put some more symptoms out here again and someone will relate better. Wish I knew a little more about these things. heres another link to neurontin effects read all the tabs http://www.rxlist.com/cgi/generic/gabapent_ad.htm |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by Charlotte on Sep 21st, 2006, 10:18am The gabapentin is really a low dose, 100 mg. I am using them 1 or 2 at a time, 2 cause more dizziness, byt hte time I reach #6 - my day is over, as low as that is # 6 knocks me out. I came home, checked in, & was out for 11 hours - in my clothes. I go into a tailspin every so often, & I think this is that. Sort of like the end of a high cycle, but not as aware because of the nerve deadening so it threw me off badly. If gabapentin is a psyche drug, it's not very good at that. It is good at deadening the trigimenal nerve in forehead & eye area but not the vascular or nerve action in the right side above the jaw hinge. Since nothing has ever worked better, I can not fault the dr & neuro for not coming up with anything better. This is as good as it has been in the past, it's just that it is going on for so long & is different that the past where the worst would be 3 months of every 3 hours - and I thought that was bad, and one cycle that hopped over to every hour. These are not medically triggered, because I wasn't taking any meds when I hit the every 2 hours in February, and it started out at an 8. It took me 2 weeks to figure out how to get on line & get a new doc through the internet (modern science is wonderful) & he has been good, willing to read stuff & think & try different meds - first Inderal - droped the pain down to 6 but killed the libido (hsuband asked me to change meds),then Paxil - lowered pain at bottom level but not top so I stopped that, then since May have been using liquid kudzu which lowered the pain from the top & i'm still using it. The frequency is why the doc referred me to the neuro. I also used maxalt mlt, cut into 4ths - which doesn't seem like much but I timed the hits & took them at the 2nd ramp up and they stopped it in 5 minute. Both the dr & neuro wanted me to use less maxalt, & the neurontin has cut out the need for it by deadening those nerves that were active in my ramp ups. The symptoms right now - beginning & end with edema on inner elbs, inner knees, ankles, & forehead all tingling, get smacked in the r side jaw/temple area w/ 6 to 8, sweating in there somewhere, ramps up & down for about 50 minutes, ends with same exact tingling & sweating that it began with, & resdiual dizziness. It's the same with or without the meds right now. I think it was the end of a high cycle where they come back to back and varry, and my body was just confused. I feel somewhat better today, a little more stable. Charlotte ps Today is going much better. I feel like a human. ps forgot to mentino the indocin 75 mg time release twice a day, which also helps the trigiminal nerve pain in front but does not prevent, so supposedly that would rule out ch & cph, although it does help. |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by MJ on Sep 22nd, 2006, 2:07am Hi charlotte Like I said it was just thoughts I had. Glad your feeling a bit better. |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by sailpappy on Sep 22nd, 2006, 6:09am Hi Ms Charlotte, I have been chronic my entire 35 years and most nights I get hit 3 times before I give up the battle with sleep, I noticed you said that the Neurontin is a Psyche Drug. Actually its not, its primarially an anti seizure drug that also doubles as a nerve deadening agent for varied uses. I have tried taking it several times and without fail it makes me way too dizzy and I am forced to cease taking it. Doesn't help the Clusters any how! Pappy Brand name: Neurontin Pronounced: NUHR-on-tin Generic name: Gabapentin -------------------------------------------------------------------------------- Why is this drug prescribed? Return to top Neurontin has two uses. First, it may be prescribed with other medications to treat partial seizures (the type in which symptoms are limited). It can be used whether or not the seizures eventually become general and result in loss of consciousness. Second, it can be used to relieve the burning nerve pain that sometimes persists for months or even years after an attack of shingles (herpes zoster). -------------------------------------------------------------------------------- Most important fact about this drug Return to top Take Neurontin exactly as directed by your doctor. To effectively control your seizures, it is important that you take Neurontin 3 times a day, approximately every 8 hours. You should not go longer than 12 hours without a dose of medication. -------------------------------------------------------------------------------- How should you take this medication? Return to top Do not increase or decrease dosage of this medication without your doctor's approval; and do not suddenly stop taking it, as this may cause an increase in the frequency of your seizures. If you are taking an antacid such as Maalox, take Neurontin at least 2 hours after the antacid. You may take Neurontin with or without food. --If you miss a dose... Try not to allow more than 12 hours to pass between doses. Do not double doses. --Storage instructions... Store capsules and tablets at room temperature. Keep the oral solution refrigerated. -------------------------------------------------------------------------------- What side effects may occur? Return to top Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Neurontin. When taken for epilepsy, more common side effects may include: Blurred, dimmed, or double vision, bronchitis (in children), dizziness, drowsiness, fatigue, fever (in children), involuntary eye movement, itchy, runny nose, lack of muscular coordination, nausea, tremor, viral infection (in children), vomiting, weight increase (in children) When taken for nerve pain, more common side effects may include: Accidental injury, constipation, diarrhea, dizziness, drowsiness, dry mouth, headache, infection, lack of muscular coordination, nausea, swelling in arms and legs, vomiting, weakness A wide variety of uncommon and rare side effects have also been reported. If you develop any new or unusual symptoms while taking Neurontin, be sure to let your doctor know. -------------------------------------------------------------------------------- Why should this drug not be prescribed? Return to top You should not take Neurontin if you have ever had an allergic reaction to it. -------------------------------------------------------------------------------- Special warnings about this medication Return to top Neurontin causes some people to become drowsy and less alert. Combining it with morphine makes this more likely. Do not drive or operate dangerous machinery or participate in any hazardous activity that requires full mental alertness until you are certain Neurontin does not have this effect on you. In children, Neurontin occasionally triggers behavioral problems such as unstable emotions, hostility, aggression, hyperactivity, and lack of concentration. However, such problems (if they occur) are usually mild. Be sure to tell your doctor if you have any kidney problems or are on hemodialysis, as your doctor will need to adjust your dosage of Neurontin. Tell your doctor about any medications you are taking, including over-the-counter drugs. -------------------------------------------------------------------------------- Possible food and drug interactions when taking this medication Return to top If Neurontin is taken with certain other drugs, the effects of either can be increased, decreased, or altered. It is especially important to check with your doctor before combining Neurontin with the following: Antacids such as Maalox Hydrocodone (Lortab, Vicodin) Naproxen (Naprosyn) Morphine (Kadian, MS Contin) |
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Title: Re: For those who get hit every 2 hours, MJ, Star, Post by Charlotte on Sep 22nd, 2006, 9:46am Thank you, MJ, Star, Pappy, Kathy, Unsolved, Sandy, Dave, BB, & George. I really needed the input and the connection with you right now. It makes such a difference - like a light at the end of a tunnel. I did test, early on, if only indocin or only neurontin helped more, and it helps more to use both daily, along with my kudzu. If I space the neurontin, it doesn't make me too dizzy. I don't think I will be able to get up to 900mg which is the neuro's goal for the end of the 9 week escalation. The doc says if 1 at a time works, do it that way. I do function at dizzy since I wear bifocals & run up and down stairs all day. It works great on low cycles, but not so great on high cycles & end of high cycles which nothing works for. I'm a difficult patient, and not very obedient. I always want to stop meds. This time, I'm trying to obey. Thank you for being here. Charlotte |
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