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Title: I need help....... Post by eisgirle on Sep 21st, 2005, 10:37pm I am a supporter and am very upset with what is happening. My fiance's neurologist just keeps changing his meds saying you can't have your bed and sleep in it too--what the &@!$ is that all about. Are doctors not there to help? I agonize everyday seeing what he goes thru and all I can do is sit beside him holding his hand while he tries to recuperate. I then go to work crying because I feel so helpless. Now he is saying he is a loser and why do I want to marry him next year. We feel like we are fighting a losing battle. I am so glad I found this site and am glad people listen --I am especially talking about Major she has written me a few times and been a very big help. Thank you to all that read these and any comments help. Dawn :'( |
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Title: Re: I need help....... Post by jcmquix on Sep 22nd, 2005, 6:33am Hi eisgirle... Its nice to meet you, sorry that you have found us.. but this is the best place to be for You & Your Boy-friend.... I am a CH suffer'er myself.. so I know alot of the feelings that Your BF is going through... The First thing I want you to do is read this post, their is Hope & Help out there... This is how my Wife (Sassy_Lady / Jolene) felt when she got here... http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;action=display;num=1122569603 Now thanks to the Great People and the Information on this Site... We have made it through one of the Toughest cycles of my life.... Get the BF here and get him to Read, Read and Read more.... It helps to know that he is not going Crazy and that he is not Alone in this Battle.....and not a LOSER... It will give Him & You comfort talking to people here.. the lights are on 24/7/365.... With that out the way... Sound like He needs to find a Dr that will listen & work with him.... Print out the information on this site and take it to your DR... if he won'e read it, find one that will... Is Your BF getting the Night time Hits.. ?? If He is, has He ever tried the Melatonin..?? I started using it at the advice of the Veterans here and it reduced the amount & intensity of them.... Melatonin is available OTC, you can find it in the Health Food section of any major store... Just consult a Dr, before starting any OTC meds... ok... Get the 3mg pills.... Start with 9mg each night (3 pills), about 30 minutes before bed. It will take about 3 to 4 days to start working, but He should notice a differance... I also use 50mg Benadyrl with the Melatonin.... If he does get a night time hit and wakes up, he will be a little groggy... but it should help the attacks... Does Your BF use any meds..?? Preventives or Abortives.. ??? The key is finding what works and what does not... but with the right Dr.. You both can survive CH.. I just went through a 3 month cycle, I was Pain Free for almost 3 years and then out of the blue they started again... I have had them all my life... So get Your Gloves on, Grab the BF and get ready to Fight the Good Fight and Kick this BEAST in the A$$.... Keep us Posted and let us know what is going on, this is about the only place in the world that you guys will get the Support you need and the Information to deal with this.... In my Prayer's & Thought's God Bless & PFDAN's Charlie |
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Title: Re: I need help....... Post by Jackie on Sep 22nd, 2005, 7:58am Hi Dawn. I'm married to a clusterhead. Some of the feelings you describe are so true....Feeling helpless is terrible. Keep telling yourself that it will get better. Just having your support helps him a bunch. Charlie has given you some great advice. A new doctor might not be a bad idea. Please try to remember that you all aren't alone. There are people here day and night. Good luck to you and your sweetie..... Jacks 8) |
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Title: Re: I need help....... Post by Emily87 on Sep 23rd, 2005, 6:09pm Hello- the web site listed in the earlier reply is a good one and I think it has recommended drs. I'm suggesting this because we have been through hell with inexperienced and undereducated drs as well. Even Neuro's! One actually wanted my husband to suffer through a full headache in his office rather than take his imitrex injection just so he could "witness what happens". Our current neuro was livid when she heard this. The right dr makes all the difference in the world! I never thought we'd find one but i have to say that in Connecticut I think Dr Tanya Bilchik hung the moon, even when I get concerned about how much or what type of medication she's prescribing, at least she's there, she responds and most important of all she treats my husband with respect, as an adult with a serious condition that he has no control over and recognizes that this is beyond mere pain! Try out the 'Ouch' website and look up drs! good luck! |
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Title: Re: I need help....... Post by Emily87 on Sep 23rd, 2005, 6:11pm http://www.clusterheadaches.org/index.html Sorry, thought maybe I should actually be sure you had the website address. This is for the Ouch site, :) |
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Title: Re: I need help....... Post by eisgirle on Sep 23rd, 2005, 6:22pm Thank you for all the replies that I received. My fiance is on lots of medication that jsut doesn't seem to work. He is on veraphamil, epival, and the imitrex shots. He has the worst ones in the middle of the night. We will certainly look up this melatonin pill and see if he can go onto that to help with the night battles. Thanks again Dawn |
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Title: Re: I need help....... Post by jcmquix on Sep 24th, 2005, 2:59pm on 09/23/05 at 18:22:00, eisgirle wrote:
Try the tip to the left, with the TREX inj Tip.. I divide the Stat dose shots into 1/3 rd's... I put it into Diabetic Sryinges.... I use the 1/3 shot and wait about 10 minutes, if I do not feel any relief I use another, but doing this will also cut down on the amount of TREX inj used for each HA and also the amount for the 24hr peroid..... Try using O2 first... then go for the shot, while waiting for the TREX inj to work, use the O2 again.... Give the O2 a couple of tries, it didn't work the first time... but I learned how to breathe and remain calm, and it worked fine.... just remember to try to remain calm during a HA, seems the more worked up I get the worse the HA will be... God Bless & PFDAN's Charlie |
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Title: Re: I need help....... Post by eisgirle on Sep 24th, 2005, 7:23pm Thanks Charlie for all the helpful info. That is not the first time we have heard about people making their needles last longer--they knock the sh** out of him so that might be worth trying. Today is the first day he hasn't had one--yeehaw!!!! Hopefully the epival and verapamil together are helping. Thanks everyone for you thoughts and information. Take care Dawn |
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Title: Re: I need help....... Post by lionsound on Sep 26th, 2005, 7:48am on 09/21/05 at 22:37:30, eisgirle wrote:
well, if you can't have your bed....you can sure enough can get a new doctor! No, life isn't perfect and we all live with our pain and meds don't always work, but you don't have to put up with a doc that's not listening to you and throwing meds at your fiance that you are unsure about. Your fiance deserves good care. Has your fiance tried Oxygen? http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I use it a lot..it works well for a lot of people. Please do not let his CH prevent you from living your life! You are a fabulous supporter for him and sometimes it may feel like we are losing..... every day we wake up is a win. this place has been a lifesaver for my family and lots of others...welcome and enjoy the best med ...SUPPORT!!! :) Be well and PainFree! -lionsound |
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Title: Re: I need help....... Post by eisgirle on Sep 26th, 2005, 10:28am Thank you lionsound for your response. Well I am glad to say that Frank is back at work today after 3 long weeks so it may look like the meds are helping but if they come back we will certainly try the oxygen. Thank you all for your support towards me-this website is amazing. Thank you Dawn |
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Title: Re: I need help....... Post by sassy_lady on Sep 26th, 2005, 2:29pm Hello Dawn, And welcome, sorry you are here, yet you are in the right place, to the left of this site you will find sooo much good info., & here you will find so much understanding, I am a supporter, jcmquix is my husband. & he is a ch'er. I know how it feels to be helppless in these things, I about lost it, & then my husband found this site, I hide for awhile & read as much as I could, & I still got pissed off!! to me all I found was some answers to questions, yet still nothing new that I could do, that I was not already doing, but the info on the meds. & what to try & what not to try, help alot!!! I have migrains, nothing let my husbands ch's, don't get me wrong, I hurt like hell too!! & it really sucks when we both are getting hit at the same time, talk about needing space between us!! oh lord do we ever!! but we work through them!! & thank god for the support here & the people here. get your so to be husbands butt on here so he can vent & see that he is not alone!! & be careful to read all about the meds here, ask questions, needless to say, people here know more about ch's & meds then dr.s do!! & don't feel bad or scared to find a differant dr., there are dr's out there that will read & help!! Lots of Prayers & Love to you & yours!! PFDAN Jolene |
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Title: Re: I need help....... Post by eisgirle on Sep 26th, 2005, 2:56pm Jolene, Thank you for your comments and Frank has sat down with me and read entries and he never realized that so many ppl have CH. Anything we have read before said 1% of ppl have it well according to this site it looks like alot more and he has printed off lots of info to take in to his employer and info for hi dr. Thanks again all of you. Even supporters can get answers from this site. Great job Dawn |
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