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Title: Cluster/Migraines for 29 years Ready to give up Post by Happygma on Jun 3rd, 2004, 12:26pm Hi, my name is Dotti (Happygma). I was in a horrendous auto accident 29 years ago. I crushed the entire pelvis and the TMJ. The Pubic Symphisis was severed and after many deliberations they decided to fuse it (which has never been done, and has never been done since). Because of this fusion my entire spine was misalligned causing chronic Cluster/Migraine headaches that have nearly destroyed me. I have been through pain clinics, bio-feedback, injections into the base of the skull of lidocane, every drug known to man. I am now contemplating having an implant placed to block the nerves to my head. About every 4 to 6 weeks they have to put me to sleep with high doses of narcoitcs.. this is the only thing that breaks the cycle when they become unbearable. I am willing to try anything anyone can think of. Live isn't very worth living these days. I have stopped complaining to anyone anymore and just hold it inside. Of course, my husband SEES the pain I am in but doesn't know how to help me. Pain is the loneliest emotion in the world, isn't it... only those who have experienced it know that. If anyone has any ideas for me... I am game. Thanks for letting me vent |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Elaine on Jun 3rd, 2004, 12:38pm WOW you been through a lot. Never give up! Have you tried Imitrex? Have you tried o2? Those seem to work best for us. I know some Doctor more than likely said that caused your clusters. I don't know anyone in this world that knows what causes our pain. I just know a lot of people who have it. |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Happygma on Jun 3rd, 2004, 1:23pm Hi, Thanks for your reply. Yes, I have tryed imetrix, but it constricts my heart way to much, after several times I stopped, fearing it was doing more damage to my heart that it was to curing my headaches. Tryed O2 also. Because of the combo makeup of my headaches it has been impossible to find any relief. Thanks for your concern and prayers. |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Edna on Jun 3rd, 2004, 10:47pm HUGE BUMP HERE (let's offer up some advice and support here) Hi Happygma, So very sorry to hear of the pain you're going through. My advice to you would be to read all you can stand that's available here for you. Lots of ppl went through a lot of hard work to make it available. And if there's something you don't understand, let us know. We're here to try and help. Come back to us for support, but please stick with us. We care. Wishing you the best of luck in finding your relief. pf wishes, EDNA |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by cootie on Jun 3rd, 2004, 11:00pm Wow.......that's alot to have to go thru. Even tho I am a supporter here I know what you mean by pain and no one understanding. Actually it seems that people don't believe you or that it could possibly be 'that bad' and if they ignore you on the pain subject you will forgit it hurts that bad. Did your doc tell you imitrex was hurting you.......cuz it seems to help alot of people here.It's been Brad's salvation to get him thru....doesn't always work fast enuff but at least he knows some releif is due when he takes it. Good luck to you .....I'm wishing you some PF days ahead !!! When it aches it hurts Pam |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by TxBasslady on Jun 3rd, 2004, 11:14pm Unfortunately, giving up is not an option here. LOL Seriously, you need to read all you can. Check out the links on the left. Remember that you're not alone. We have all felt the same as you at some point. This board offers some great support and some good advice. It's always good to be able to talk to others who suffer as you do. We understand the pain.... Stay with us... PF vibes, Jean |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Charlie on Jun 4th, 2004, 2:14am Welcome and so sorry you have to deal with this horror. Lots of good ideas here and I hope you stick around to let us know how you're doing. Here is something to try: Dr. Wright’s Circulatory Technique What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as a slight expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by cathy on Jun 4th, 2004, 2:25am Give up....we don't do give up here, everyone here understands your pain like noone else can offering you vibes and prayers is all I can do from here, I have heard that the implant you are referring to has had some good results I hope it does for you too, let us know how you get on, and stick around the support here is second to none. PF times to you from across the pond. Cathy |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Opus on Jun 4th, 2004, 7:47am Dotti, I used to get headaches in the form of Cluster/Migraine syndrome. I feel for you, I was having 4 hour ha's with the pain of clusters, the nausea and sensitivities of Migraines and nothing would stop them. It is very rare and there is not much information. The only different treatment I read about was that a beta blocker's as a preventative was used. I never tried it because my Cluster/Migraine's split into the separate headaches. I still get them but they are not the norm for me any more. There is a horrible paradox because everything I did for clusters can trigger migraines, ( for example, coffee, cigs, stress ), and vise versa ( relaxing, laying flat, sleep) so finally I started doing nothing for the Cluster/Migraines and just lived them out. I did find that keeping from doing the cluster dance, and boy was it hard, did help reduce the pain. Opus/Paul |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Rock_Lobster on Jun 4th, 2004, 7:53am Happygma, How much Imitrex did you dose with? The 'suggested' dose is 6mg/0.5ml, but most clusterheads feel that is waaaay too much. About 1/4 that (0.15ml) does the trick for me, with zero side effects. That is with vials an syringes... preferred since you control the dosage. There are other triptans out as well... others may offer opinions on those. Mayhaps clusterbusters.com may have be your ticket... read some of the post on this site from those who have had luck with that route. Best of luck, Wrokk |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Happygma on Jun 4th, 2004, 12:46pm WOW... I am amazed at the response I have had... this is amazing. AND, I do not take anything any of you have said lightly... I will try it all. The relaxation technique, the lower dose of imetrix. I can't thank you all enough... you don't know how much it means to me to have so much support... it is crazy! Where have you been all my life? LOL! ::) I will continue to research and study this site and others for answers... the right one has to be out there. I did call my Dr. yesterday and asked to try Topzmax. God bless you all |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Woobie on Jun 4th, 2004, 12:50pm HI Happygma Welcome!! I just wanted to say hello ... i dont have anything to add... but I'm sorry you're in so much pain. I hope something someone suggests works for you! tina :-* |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by purpleydog on Jun 4th, 2004, 1:34pm Hello Happy I too get the cluster/migraine combo and they were hard to treat. When I had them together, I couldn't get control over either one. I'd be in agony holding still so I didn't puke and I'd be in agony from dancing to my cluster HA. There is lots of good info on this website. Do some reading, there are lots and lots of meds to try. Make sure your doc is willing to take this on, if not get a neuro. Hopefully oxygen will work for you. Welcome to the board! purpleydog |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by John_D on Jun 4th, 2004, 2:06pm Hi Dotti, That is an amazing story. Quote:
That is an amazing thing to say. Welcome and I hope to read more of your posts. John |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by stuey on Jun 4th, 2004, 2:39pm My suggestion would be to perhaps try to get on Verapamil SR as a preventative. I take 960 mg a day and that amount finally broke my cycle. If you have high blood pressure and take meds for it verapamil is also used to control high blood pressure so you'd be knocking out two vultures with one prescrip. Ask your doctor about it. I hope you get the pain under control soon. Wish you could do the imitrex, have you tried any other sumatriptins? In any event, verapamil helps many people here and after two days on it my cycle stopped. Prayers for you. Stuey |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by purpleydog on Jun 4th, 2004, 6:38pm bump |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by UN_SOLVED on Jun 4th, 2004, 8:04pm First of all ... NEVER GIVE UP ! on 06/03/04 at 12:26:24, Happygma wrote:
NOBODY knows what causes CH. Some things may trigger an attack. on 06/03/04 at 12:26:24, Happygma wrote:
There are TONS of meds to try. I've been doing this for years and still haven't gotten around to them all. You must keep looking if your not finding pain relief. on 06/03/04 at 12:26:24, Happygma wrote:
I was 'the first' in the US to have a "bi-lateral Occipital Nerve stimulator' implant at MHNI. It was a 'trial' implant which means alot of wires were left external to see if it would work. IT DID NOTHING TO HELP ME. If you still wish to try this ... ask about a 'trial implant'. on 06/03/04 at 12:26:24, Happygma wrote:
I've never heard of anyone breaking a cycle with narcotics. Never works for me. Best of luck Unsolved |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by jonny on Jun 4th, 2004, 8:07pm 29 years and ready to give up? Suck it up, I got 30 years "CHRONIC" You got help now so STFU!!!! Christ!!! ..............................jonny |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Happygma on Jun 5th, 2004, 1:23pm Nice guy Jonny..... thanks for your comforting words! Sorry you have a year on me.... it must have hampered your personality along the way, too. Your brand of "support" I can live without... thanks! Happygma |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Happygma on Jun 5th, 2004, 1:35pm I was wrong to say I have tryed allthe meds.. you are right, that would have been impossible. It just seems that way. I did call my Dr. about Tomamax and he called a scrip in for 25 mg. Now I don't know what to do with them. He gave me no indication. I read somewhere that you begin with low dose and work up and that sometimes works. Does anyone know how to use this med? I also called yesterday afternoon and asked Dr. for a nasal spray imetirx thinking that I would control the dose better than the injections. I have been on several of the anti-depressants, prozac for 12 years actually. I am off them now... they didn't seem to work. As far as narcotics... the Dr. used to prescribe everything for me... they didn't work, just made me sick. But, the Dr. now has me go to the hospital and they give me enough to completely put me to sleep when it gets so bad (about every 4 to 6 weeks). That does help for a couple of days... it doesn't take them away, but it makes it possible for me to get control again. It is only when the pain is out of control that I need that. Other than that, I do not take any narcotics.... hate them. I don't know why it works, but it does help. I was interested in your reply about having the pain receptor put in.... I haven't heard from anyone that has had that done... it just sounded good. I have had lidocaine injections in the base of my skull and that didn't work, so maybe this won't either. I would like to know more of your experience with the transmitter. I have also done TENS of several variaties to no avail. I use bio-feedback constantly and I think that is why I haven't completely lost my mind. I don't know about any blood pressure meds... I normally have a very low pressure as it is.... don't know how it would work on me. ANy other suggestions? Thanks.... Happygma |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by OneEyeBlind on Jun 5th, 2004, 2:21pm O2 sometimes doesn't work because people do not use it correctly. Read the O2 link to the left and make sure you were dosing correctly and using the proper mask. O2 works great for a lot of people here, this is, once they start using it correctly. Also, the suggestion of Verapamil as a preventative sounds like it might be a good one for you. Also, ask your doc about the lower doses of Imitrex ..... Imitrex is a Godsend for me. Good luck, and welcome to the board ! |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by jonny on Jun 5th, 2004, 2:24pm on 06/05/04 at 13:35:52, Happygma wrote:
Lithium/Verapamil combo. .......................................jonny |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Rock_Lobster on Jun 5th, 2004, 2:43pm Actually with Nasal Imitrex you will have no control over the dosage. You will understand fully when you try the first one. I am guessing that you had the Imitrex Stat-Injector. Ask for the syringes/vials instead. For chronics Jonny preaches the truth... try his cocktail. |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Jayne on Jun 5th, 2004, 3:03pm Yes the Lithium and Verapamil combination is the best for me. Also why don't you tell us where you live. That way if there is another sufferer in your area that has a doctor who knows his stuff they could recommend them to you. |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Jayne on Jun 5th, 2004, 3:07pm Here you go Happygma belowis a link to the recommended doctors list. See if you can find a new doctor. You will have to email the people who recommended these doctors, or look them up in your phone book. Getting a doctor who UNDERSTANDS clusterheadaches is the key to getting better. http://www.clusterheadaches.org/doctors.htm#usa |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by jonny on Jun 5th, 2004, 3:08pm " Because of this fusion my entire spine was misalligned causing chronic Cluster/Migraine headaches" Thats total bull shit if you ask me......but whos asking. Aint CH a thing to do with grey matter? I could be wrong, but I doubt it ;;D .......................................jonny |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by Happygma on Jun 6th, 2004, 2:07pm Unsolved, could you please tell me more about he neuro-transmitter you had.... I am really interested in it, but if it doesn't work I don't want to have to go through that. Thanks everyone for all the support and advise... WOW. I am glad to know that the nasal spray doesn't give you any more control over the doseage... I will definately ask for the springe and vile. I am a little hesitant to take blood pressure meds as I have a very low pressure anyway. My Dr. will prescribe anything I ask for but doesn't research it very well... All the Drs in Utah are in Salt Lake City... does anyone have any Drs. near the Ogden area? Thanks again... I am so desperate here. Dotti |
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Title: Re: Cluster/Migraines for 29 years Ready to give u Post by UN_SOLVED on Jun 6th, 2004, 3:23pm Check your PM. Feel free to ask me any questions regarding this procedure or any of the nerve blocks I mentioned. PF Wishes Unsolved |
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