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Title: Hi - new to board Post by Valerie on Oct 1st, 2004, 2:19pm Unhappy to have CH, but glad to be here. I've had CH since I was 12 - I'm 36 now.... I was diagnosed about 5 years ago. I'm currently in week 3 of what I hope is a 4 week cycle. I took Melatonin for the first 2 weeks and it really helped. I did a prednisone taper in week 2 - it knocked the ha out for 3 days, but once the taper started they came back strong. I've been having them every night right after I fall asleep and again in the morning. They suck! I've been taking verapamil, but it doesn't really work for me - it makes me feel wierd. I'm going to the doctor shortly and will ask for Zomig - hopefully it will help. I've been checking out the board and reading the links - this site is great and it's a huge comfort to know there are others out there that know what I am going through. I wish none of us had to be here. Looking forward to getting to know you all!! Valerie |
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Title: Re: Hi - new to board Post by BobG on Oct 1st, 2004, 2:28pm Hi Val. May I call you Val? Welcome Val. Sorry you had to find this place. Many of us find that sleeping with the head elevated, or better yet, sleeping in the La-Z-Boy will help lessen the cluster attacks. It won't stop them but just lessen them a bit. Attacks after falling asleep is a sure sign of clusters. Just as you get into the REM sleep mode, POW! You might try Dramamine (sp?) before bed. It'll help you from entering the REM sleep mode. Please keep us informed on how you are doing. We hate it when new people come here but worry when they don't keep in touch. |
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Title: Re: Hi - new to board Post by Valerie on Oct 1st, 2004, 2:35pm Thanks Bob - yes you may call me Val :) Do some find that Melatonin works for a while then stops? It worked great for 2 weeks, but then I started getting hit at night. I've been taking 6mg before bed - I'm afraid to take more. One night I had a k7-8 and was so groggy - it was not pleasant. |
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Title: Re: Hi - new to board Post by BobG on Oct 1st, 2004, 2:55pm Zomig (Zolmitriptan) is a abortive medicine. It is to stop a headache that is in progress. Another triptan is Imitrex. There is a button on the left side of your screen about using only part of an Imitrex injection (2 or 3mg instead of the whole 6mg shot) About you verapamil (a preventative)...........how much are you taking? Some folks are taking 800-900mg a day (your doctor would probably freak-out if you told him/her that). And some are taking Lithium along with the verapamil. Click the medical info button on the left and/or the OUCH website button. There is more information on medicines under those buttons. I have no experience with Melatonin but I'm sure others can answer that question. |
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Title: Re: Hi - new to board Post by Valerie on Oct 1st, 2004, 4:49pm Just got back from my GP - I'm new to this area so I don't have a neuro - she is referring me to someone. I've been to the Diamond Headache Clinic, that's were I was first given pred and verapamil. They had me on 240mg of verapamil, but I already have low blood pressure. It made me feel like I was constantly going to faint - it also gave me tingly hands and feet. I've been taking 160mg for the past few days and it doesn't seem to be helping - I don't know if it's not enough or if it hasn't been long enough. Anyway, my GP gave me Zomig to use as an abortive until I get to the neuro. I'm hoping these things are gone by then but at the very least I will have someone who will hopefully be understanding and I'll be prepared for next time. I spent the first half of the appt listening to the nurse tell me all about her migraines, and the second half listening to the doctor tell me that females don't get clusters - that's great, if I not supposed to have them I'll happily give them away ;) |
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Title: Re: Hi - new to board Post by Redrum on Oct 1st, 2004, 6:16pm You didn't mention oxygen (link to the left) but a lot of folks here really get help from it but its important you do it right and not let Dr's or insurance companys talk you into the wrong equipment. many of us also like melatonin a common dose seems to be 9mg. keep reading and posting this is a great sight. you may want to also look at the clusterbuster sight for an alternative treatment that looks promising, links around here somewhere. Sorry you have a reason to be here but welcome! Andy |
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Title: Re: Hi - new to board Post by thebbz on Oct 1st, 2004, 8:28pm Hi Valerie, I too have had the demon strike back on the taper. The neuro increased the dosage and lengthened the taper. The prednisone sucks. Although it beats the alternative. I have the migraines with the cycle so when they go into the "Oh I have migraine ",speel I just want to tell them "I did'nt say migraine did I? My diagnosis is Cluster/Migraine, so they all think migraine and don't have a clue about CH. I just want to kick em. [smiley=laugh.gif] [smiley=laugh.gif] Anyway keep your spirits up and good luck with the neuro. [smiley=jammin.gif] |
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Title: Re: Hi - new to board Post by yikes_another_one on Oct 13th, 2004, 10:09pm Diamond clininc in Chicago??? I am new to Indiana, and my GP has migraines.... it will be easy for me to get zomig.... I don't know it I want a preventative, so far i only get 4 attacks a year, and zomig will/ should take care of them.... any new news???? wishing all a long PF and happy day/night |
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Title: Re: Hi - new to board Post by TxBasslady on Oct 13th, 2004, 11:03pm on 10/01/04 at 16:49:20, Valerie wrote:
LMAO....this doc visit shoulda been free [smiley=huh.gif] I certainly will not downplay the migraines....they are bad....I had them several years ago. However, if given a choice, I would gladly give the CH away, and opt for the migraine. There are several here who suffer from both at the same time. This must be horrible. CH by itself is bad enough. Hope you get the meds you need to take care of the beast. Let us know how you're getting along. PF vibes, Jean |
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