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Title: Hi there, everyone Post by AliceCatherine10 on Sep 25th, 2004, 5:49am Hi there. My name is Alice, and I have just been diagnosed with clusters. I wish none of us were here, but since we are, I am grateful that there is a place I can go to ask questions and comiserate. Here's my story: I'm 24 years old, and have fibromyalgia and Raynaud's, which cause me joint pain and a ton of fatigue. I developed these headaches about 2 months ago, and wound up in the ER about 4 times now. I'm on a narcotic pain med for the pain I have with the fibro, which seems to be making this headache worse, if not triggering it alot of the time. (I've been on these pills off and on for years, and never had this problem) I quit smoking about a year ago, and quit nicotine replacement about 4 months ago. I don't drink alcohol and I drink at least 6 16 oz bottles of water a day. I take daily vitamins and eat well. I've cut back to 0-1 prescription pain med a day, but the headaches still persist. ( I would stop taking these pills altogether if the pain in my joints didn't get so bad. To make matters worse, the heat I use to calm the fibro makes this head pain worse, while the caffeine I use to ease this monster headache makes the pain from the fibro worse)My doc says he believes this is chronic. My CT came back normal, but my GP would rather have me see a neurologist for this. At first my symptoms were classic; droopy, watery eye, stabbing horrible pain, always on one side, always at the same time of day, etc. Now, I have been getting some pain on the other side, though not as bad as it is on the original. I also have dizziness, nausea, and bad neck and shoulder pain. What my doc and I think is that the cluster is causing a tension headache as well. But that doesn't explain why the pain would switch sides like this so suddenly. I have only ever had a week's reprieve from the pain since this started, so it doesn't seem like much of a cycle. Does the pain sometimes switch sides for chronic cluster sufferers? Thank you for your time. Here's hoping for a pain free day :) Alice |
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Title: Re: Hi there, everyone Post by karma on Sep 25th, 2004, 8:48am Hi Alice, Finding this site will go along way in helping the anxiety you may be having with CH. read, read, read. The pain does sometimes switch sides but then you will have the same symptoms (droopy, watering eye, nasal congestion etc. etc.) If these aren't their then it may well be tension. Back and shoulder pain may well be tension. Try and get a proper diagnosis from a neuro or headache speacialist although the symptoms you decribe seem pretty calssic of CH. Narcotics and over the counter pain meds. will usually make the episodes worse so you and your doc need to find a balance of meds that work. Oxygen works great for alot of people for CH attacks and has almost no side affects. If you have headaches that wake you up at nite then 6-9mg of Melatonin (a nonprescription suppliment) before you go to bed sometimes helps. This also has very little side affects. Try and gather as much info as possible on the varoius treatments that are being used and take it with you when you go to see the neuro. Good Luck and don't be afraid to ask questions. Someone is usually here to help. |
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Title: Re: Hi there, everyone Post by EmpressJMB on Sep 25th, 2004, 9:17am Welcome Alice! I found this site 2 wks ago and am so thankful! The people here are outstanding and the info is just as good. I'm a right-sider but they have switched to the left about 5 times in 27 years. Who knows why? As everyone will tell you, educate yourself. There is so much info out there now. I find the narcotics cause rebound HA's. I have been PF for 15 days now. :D My course of treatment was prednisone, verapamil and imitrex. I haven't had to use the imitrex yet and still don't know if it will abort. I'm a little anxious to find out. No doubt I will at some point. I also have a question for those veterans out there, will I be taking verapamil the rest of my life or just until the cycle passes? Again, welcome and hope you find what will work for you with all your other problems. I'll send some pf vibes and prayers your way. Janet |
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Title: Re: Hi there, everyone Post by karma on Sep 25th, 2004, 9:29am My personal opion is that all medication should be taken a sparingly as possible. The verapamil should not be taken when your cycyle has ended although it is sometimes hard to tell when that is. People will usually wean themselves off it over a course of weeks or months. I recently tried the verapamil for the first time and stopped taking it even though I still had some twinges and minor pain. After a couple of days that too cleared up. But check with your doc if you want to make changes. Be careful if you are doing anything that significantly increases your heart rate. The verapamil may decrease blood pressure. |
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Title: Re: Hi there, everyone Post by miapet on Sep 25th, 2004, 9:30am Welcome .. . sorry you're getting slammed. A couple of things . . as was stated earlier, pain medication almost always causes rebound h/as . . .so try to get off them. I know your other issues require medication, but mayber there is something else? I have a couple of friends with fribro, they are on an anti-dep cocktail and it works wonders. One also use accupuncture, and electrically stimulated accupuncture, and she's doing really well. The achey feeling is gone, and she sleeps at night again. Just some ideas? I don't have any experience with Raynauds, so I'm at a loss there, sorry. As was earlier stated, o2 works well for many people, as an abortive. When D was using it, it took his h/as down from 40 min to 7 min. Much more 'doable' *g* As for being chronic, don't let that word whack you right now. Although this past 2 months probably feels like an eternity, it takes a full year with less than 30 days p/f (new standard, as opposed to the old 2 week one). So, have hope *smiles* You might just kick the beast to the curb *smiles* On the verapamil thing . . .some people can take it, others can't. Some take it for a very long time, while it appears others are able to stop. My 2cents, we pay docs to 'practice' which, unfortunately makes us the guinea pigs. *positive light and energy* miapet |
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Title: Re: Hi there, everyone Post by AliceCatherine10 on Sep 25th, 2004, 1:58pm Thank you for all the replies :) The oxygen helps the most, but sadly I don't have that at home and wind up in the ER or at my doctor's office. I am wary of Imitrex because of the chest pain side effects (I have an irregular heartbeat due to a murmur and have chest pains due to asthma anyway), and don't want to take the Fiorocet the doc gave me since I got off the narcotic, and I'd rather not trade one potentially problematic pill for another. I have very low blood pressure, and was on a calcium channel blocker, Nifedipine for circulation problems. (Raynaud's sydrome is a circulatory problem due to the unexplained shrinkage of blood vessels in the extremities, causing pain and numbness) I fainted frequently, even on the lowest possible dose. I take 1 325 mg asprin and 1 325 mg tylenol for my joint pain right now, and it doesn't seem to be making the headaches worse, though I know it can. I have to take something for it, or I will go crazy. Asprin has always worked the best, but due to stomach problems a few years ago, my doc had me stop taking it. The antidepressants I am also wary of, having been on them for this in the past. I was given quite a bit, and wound up a zombie. I may try them again, but the side effects are pretty awful for me. I was given the narcotics as a last resort since there isn't much in the way of meds I can take. Yup, I've tried alot of meds, lol. I take frequent hot baths and try to stay as warm as possible. I am looking into massage therapy as a treatment option, since its a non-medicine approach that I have not tried yet. Acupunture I would love to try, but I can only do what my insurance will pay for, since due to my illness I am broke. The pain last night was from a tension headache, but now the twinge is back behind my left eye. I think the tension headache may be a rebound from the tylenol, so I really need to stop taking it. It could also be from the bunched muscles in my neck ( happens from the fibro) that any little bit of body pain or stress will cause. I just hope this lets up alittle. Thank you again, everyone :) Alice |
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Title: Re: Hi there, everyone Post by karma on Sep 25th, 2004, 8:33pm Hi Alice, You should be able to get an oxygen script for home use. If the insurance co. gives you a hard time I think there is a procedure your doc can follow to put pressure on them. Someone else I'm sure can explain how it works. |
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Title: Re: Hi there, everyone Post by thebbz on Sep 26th, 2004, 7:37pm Hey there Alice, Narcotics are a trigger for me. Other people all react differently to meds, as well as the demon seems to find a way around anything I have taken at one time or another,what may work for a cluster or two may not the next time. The best to you and your battle. Keep on the fight. BB 8) |
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Title: Re: Hi there, everyone Post by AliceCatherine10 on Sep 28th, 2004, 11:52pm Yup, the narcotics are a trigger for me. Sometimes they help, sometimes they make it worse. I'm only taking one codeine or less a day since the fibro pain is so bad I can't sleep now and my well-meaning docs gave me more narcs which set my withdrawl back a few days. Been having some confusion/disorientation that accompanies the pressure on the left side of my head. I've fallen down a few times due to dizziness. I thought it was the withdrawl, but apparently not. Its really scary. My doc has asked the neuro to see me on Friday instead of a few weeks from now. They did some blood tests (sed rate, liver fuction, etc) that I think should have been done as soon as this all started. I'm pretty sure everything will come out fine, and these headaches are just that: headaches with no underlying cause. I keep hoping its all just an allergy to palm trees or something and it will go away soon. I feel like I'm being a baby, but I'm so scared and tired. My doc gave me prednisone and Imitrex, which I don't want. Prednisone always makes me jumpy, and I have trouble sleeping anyway. I'm afraid also of taking the Imitrex, which I've never taken before and can cause heart related issues. My doc isn't concerned, so I'll try it if I have to. The oxygen and caffeine still work the best if I catch the pain in time. I think the neuro will give me an oxygen script. I really think that I'm worrying too much. I just want this to go away. Here's hoping my docs come up with something. Thanks again for all the help, everyone. You really made me feel better. *hugs* Alice |
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