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Title: Just feel like telling someone.... Post by jon69 on Jul 19th, 2003, 8:31am I'm posting this not for any real reason, just feel like telling someone... I’ve been getting mild attacks for a few weeks now and I’ve been controlling the H/A with verapamil (two 40mg tablets, three times a day). Also been using oxygen to abort attacks and have only had to resort to injections two or three times (once because I’d run out of oxygen). Last night I went to a restaurant with friends and towards the end of the evening I felt an attack coming on. I told my friend I really ought to leave and we called for the bill. The bill took ages to come and I could feel the H/A getting worse, so I went outside. Somebody bought a chair from the restaurant for me to sit on. Although the cab was due at any time, I was getting panicky and told Kieran(my friend) to phone my wife to pick me up. I think by this time I was on about level 5 on the Kip scale. Two of my friends came out and sat with me. I was crying and in pain and I felt awkward. Lynn arrived and got me home. Her mum is down for the weekend, and we were due to go to her cousin's wedding today. Had an injection and went to bed. Woke up later with another H/A coming and took a second shot (out of oxygen). Woke up this morning with yet another attack looming. Lynn gave me some paracetamol and some Ibuprofen and I had two tablets of each. She called for the doctor so I could get some oxygen. The pain came and went for a while (about a kip 4). Lynn had to go off to the wedding as she was being a bridesmaid together with my 4 year old daughter, Ella and they left at about 8. Her mum wasn’t due to leave until midday so she and my 9 year old son were around while I dozed on and off. Doctor called, took my BP and left a script for oxygen. When he arrived the pain had subsided, but I was feeling weak. Stella called Kieran and asked him to pick up the O for me. Then the pain came back and I ended up on a level 8 kip. I was pacing and rocking, all the usual stuff , and I felt like I was going to throw up, (feeling sick is not usual when I get a headache, but this sometimes happens). I went downstairs and was pacing, groaning etc. and Stella wanted to call an ambulance. I had to reassure her that it would pass, and I gave her the Cluster notes to read. Although I want to be alone during attacks, I still like to have someone in the house for reassurance. Stella and Jack were due to leave for the wedding soon, and the pain was unbearable. Kieran had called to pick up the script for O and it seemed to be taking forever. I called him and he was just at the top of our road with it, so I was relieved. By the time he got here the pain was subsiding a little, and I took the oxygen. The pain had gone soon after he left. I reassured Stella and Jack that I was OK and they left for the Wedding. 2.15pm as I write this and the H/A is gone. I feel bad about missing the wedding (Ella and Lynn are bridesmaids, and Ella was looking forward to me seeing her), but I know I couldn’t face it. I can’t take any more Imigran (sumatriptan) until about 11.30 tonight, so I hope I don’t get hit again today. I have my oxygen and that is reassuring as during this last spate of attacks it has worked really well if I catch the H/A early enough. As I said, this last period of clusters has been relatively mild. I don’t know if it has anything to do with the Verapamil or not. Last night and this morning reminds me how bad these headaches can get. Normally during the cycle, I will have one or two really bad attacks in the middle of the cycle and then the attacks get less severe and fade out , so maybe this is the sign that they are on the way out. Here's to all fellow sufferers out there. PF days to all. |
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Title: a day in the life Post by rumplestiltskin on Jul 19th, 2003, 9:20am Quote:
I can relate. Clusters bend time. For journalings sake I always try to check the clock. After all these years I'm still amazed at the length of 5 minutes of CH pain. Manage yer pain at yer pace...butt...in my experience, I found that after being painfree for a time on yer level of Verapamil and finally the pain returned...I simply upped my level of Verap and the pains once again disappeared. For over 2 years using this method of raising my dosage I have been virtually painfree. I am now taking 420 in the morning and 240 at night and am reevaluating whether I want to go higher....BUTT I certainly consider the past 2+ years of "managed pain" as a deep blessing which I owe to the good advice I received from people at this site. Walk in the sunshine den |
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Title: Re: Just feel like telling someone.... Post by cathy on Jul 19th, 2003, 10:57am Hi Jon, sorry you had to miss the wedding and I hope the beast is on the way out. PF times to you. Cathy |
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Title: Re: Just feel like telling someone.... Post by don on Jul 19th, 2003, 11:01am This post really pissed me off! This is why. I manage pain because thats what I have to do. My cross to bear. Have been doing it for 26 yrs. An attack is an attack is an attack. Severe head pain 20-40 minutes. Gone till next time. Its become a lifestyle. Its the affects on the quality of life that piss me off and jon exemplified it perfectly. Everyones life gets disrupted. Everyone around us is socially, economically, and personally disrupted sometimes for months at a time. Our loved ones and supporters worry sick, we scare our children. WHY? Where are the research dollars? Where is the education the neuros and medical professionals need to have? Some good solid research with continuity WILL produce adequate, dignified treatment and possibly a cure. Where is it? It 's where you say? Oil fields? Finding WMD? Bailing out Amtrack and a few dozen airlines? Oh well then, I guess that justifies it now dont it! I always try to walk in the sunshine but some days are overcast. |
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Title: Re: Just feel like telling someone.... Post by Mark C on Jul 19th, 2003, 12:12pm Welcome Jon. Thanks for the post, very well put. Don....dead on...I'm starting to like you! ;D |
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Title: Re: Just feel like telling someone.... Post by kim on Jul 19th, 2003, 4:03pm Hi Jon, that post brought back a stark wedding memory of my own. Clusters were peaking. Had two small babes and hits were rough. We had a wedding on a weekend afternoon. I got hit bad early in the morning and went to ER.......At the time, was on Prednisone, 02, ...........and pain meds.........fiorinol and percoset.........it was a disaster. The 02 was the nose plug thing that was useless..........the Pred mussed me UP, and the pain pills were a joke. Hubby piles kids in car and takes me to ER in the morning..........they tried imitrex shot, 02 (which I ripped outa my nose and flung aside), some other crap that did didley..........i was literally a slab ...........just raw, can't really explain it........finally bout 11am go home. Still had the shadows, but got my butt in shower, dressed myself and went to that damn wedding. Felt like a ghost, but pasted a smile on my face.........hubby stressed.........kept looking at me and we both were so drained(and nervous another attack would come on). I don't know how we did it. You know the food and drink at a wedding. I looked at the food blank expression......drink? NO WAY!!!! Your NOT alone. And it means so much to me to be able to talk to folks who will not look at me with "that look"............. And yep, makes a body MAD at the way things are. But as I get older I also know that things could always be much worse.....Life's a crapshoot. I'm glad I did not draw something worse on the straw.... PFDAN :) |
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Title: Re: Just feel like telling someone.... Post by smfaison on Jul 19th, 2003, 6:40pm I have had CH of the episodic variety all of my life. I am now 47. My pattern is that I get them in late summer in even years. We all have our own personal "Headache Hall of Fame". I can still remember vividly headaches that I had when I was a little boy. I think every cycle, I have 1 that I will never forget. I had a real good neuro in Venice, FL and he was very understanding. He said that he sees 10 migraine patient for every CH patient, and that there just hasn't been enough research done. I think this site is the greatest. I have actually been able to find other sufferers through this site and talk to them. I think only another sufferer can understand the intensity of the pain. The other thing is we can all compare notes on what works and what doesn't. Otherwise, we are at the mercy of our neuro's favorite cure. Each time I change doctors, it seems as if they all want to reinvent the wheel. It doesn't matter what I tell them has worked for me in the past. They all want to try their way. And leave me suffering until they figure out what works. I'll stop rambling on now ;D |
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Title: Re: Just feel like telling someone.... Post by Locomotive_Skull on Jul 19th, 2003, 8:13pm Boy oh boy jon, I can tell by your post we are in the same boat. I have friggen days like that all the time. I wish you some relief and strength brother. :( |
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Title: Re: Just feel like telling someone.... Post by ShariRae on Jul 19th, 2003, 8:28pm jon I would have to agree with den's post re: managing your pain.Talk to the doc about upping your Verapamil dose.. that may do the trick for you..I can tell you it worked for me and I remain pain free (yay) Also, although you are having a rough go of it, try to enjoy the painfree moments...fight the good fight.. Huggs Shari |
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