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Topic: I feel I have had a lobotomy without anesthesa (Read 2925 times) |
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sfgirl69
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I feel I have had a lobotomy without anesthesa
« on: Jan 8th, 2008, 5:46pm » |
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Please help and be kind, I have never posted here or anywhere else for that matter before. I have had Clusters for years but have been in remission for about 11 months. The last round lasted almost a year with a few days maybe two weeks at the most in between of relief. I thought they were gone the way of the devil but NO it has started again! I can't take another year of this pain and am scared out of my already burning like fire mind. I feel like I have had a lobotomy without anesthesa.
After experiancing the shooting stabbing pain my head gets so hot you can fry an egg on it. And it doesn't go away!!! I walk around with ice on my head and oxygen on my face. I can't get anything done and I can't live like this for another year. Does anyone else have this hot head thing? And what is a Shadow headache in the CH.com terms??
Thank you for your time and I would appriciate the feedback before I jump out the window.
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Guiseppi
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Re: I feel I have had a lobotomy without anesthesa
« Reply #1 on: Jan 8th, 2008, 5:53pm » |
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Ouch! All of us have been where you are right now. It sucks.
What else are you taking? Do you have a good preventative medication you take? One that reduces the number of times you get hit? Popular prevents are topomax, verapamil or lithium. Lithium for me blocks up to 90% of my hits when in cycle.
Are you using anything besides oxygen? More importantly are you using the oxygen correctly? It's critical you get ONLY PURE 02 in your lungs. That typically requires a high flow regulator, up to 15 LPM, and a non re breather mask. Rebreathers, the ones that have you inhale what you just exhaled, and nasal canulas are worthless. Read the oxygen link on the left for info on how to set up 02.
Do you have any other abortive medications? Imitrex injectables or nasal sprays? Let us know more about your routine, we will try and help you. You're not alone any more, there is hope for managing these things and you're among friends. Hang in there.
Guiseppi
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #2 on: Jan 8th, 2008, 6:05pm » |
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Right now I am taking Maxalt-mlt and just started a round of Prednisone, I will look at my oxygen when I get home from the office. I have the nose things not the mask, does it make a big difference? And where do I get one if it does. These are things I had in my bathroom not anything that I just got from the doc. I had Kaiser and switched to Blue Cross had started with a new doc who had a heart attack and now am doctorless and desporate. I can't start all over with a new doc who doesn't understand them. All I can do is sit here in pain with tears running down my checks right now scared to death that this is going to take another year of my life away.
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Guiseppi
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Re: I feel I have had a lobotomy without anesthesa
« Reply #3 on: Jan 8th, 2008, 6:41pm » |
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Sorry to say, the nasal things you have are next to worthless. The concentration of oxygen your lungs receive is just too low to have the constricting effect you need. You need a NON RE BREATHER mask. It has a valve that lets out the air you exhale so every inhaled breath is pure 02. A medical supply store will carry them.
If you are getting the "wake you up from a dead sleep" hits, try taking 9-12 mg of melatonin before going to bed. It's an over the counter supplement available at health food and vitamin stores, very inexpensive. Many can avoid the nite time hits using that.
When an attack starts, try chugging down an energy drink, Rock Star, Monster, any that contain the combination of caffeine and taurine. Many can abort or reduce the intensity of an attack that way.
Since you have oxygen, run the nasal canula tubes into a plastic bag by poking a hole in the bottom of the bag. Tape the hole around the tubes as air tight as you can. turn on the oxygen, fill the bag with oxygen keeping the top closed with your hand. Exhale completely, inhale the pure 02 from the bag. Close the bag and let it fill with pure 02. Exhale away from the bag, repeat. You now have a crude "Non Re Breather" mask. It will work exactly the same as a non re breather and you will probably find yourself aborting in as little as 6-10 minutes.
Edited to add...use the above procedure when a head ache starts. Don't let the beast get a toe hold, 02 works best when started at the first hint of an attack.
Stick around the board, no one wants to see the beast win ever, it's a loss for all of us.
Guiseppi
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Annette
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Re: I feel I have had a lobotomy without anesthesa
« Reply #4 on: Jan 8th, 2008, 6:49pm » |
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Hi and welcome and I am so sorry to hear you are hurting that bad. I am a supporter and my husband had a cycle lasted 8 months last year so I know how terrible it can be. HUGS
Oxygen will only work well if it is 100% and no air is allowed to contaminate ie you need a non rebreather mask with a good seal around your face, anything else doesnt work quite as well. Some people use the nasal sprongs and they hold it in their mouth sucking it really tight with the lips seal around them so that no room air seeps through. However that is hard to do, much easier with a non rebreather mask pushed firmly on your face to form a complete seal. You can get a non rebreather mask from the local hospital or you can buy one online at www.clustermasx.com.
Ice and strong coffee helps a lot too. You get a hot head because of all the vasodilatation and nerve activation going on during a hit. My husband's whole body would get extremely hot not just his head. Some people find alternating hot and cold showers help too.
Have you got Imitrex injection or at least nasal spray ? They may work quicker than maxa-melts. You need to start a good preventer along with your prednisone taper, like verapamil and lithium or topamax or something. Otherwise as soon as you taper off the prednisone things will get worse again.
If you get night hits you may want to try melatonin. My husband used to get hit every night between 3am and 4 am until he got on 12mg of melatonin. Magnesium and calcium supplement work well with that too providing your kidneys are fine.
Lastly shadows are those looming headaches and pressure which seem to hang around even when you are not getting hit. They may or may not progress into a hit. Many people find cafeine in coffee and energy drinks work well for those.
Good luck with it all and take heart, not all cycles are the same, even if the previous one lasted nearly a year it doesnt automatically mean this one will too. Hopefully this will end really soon for you.
All the best and painfree wishes.
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #5 on: Jan 8th, 2008, 7:15pm » |
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Oh my goodness. I have been prescribed 5lpm and a nose thing! No wonder it hasn't done anything! Does anyone know how to go about finding a doctor who understands? Apparently just because they are a neurologist doesn't mean they know how to handle them. I am so grateful already for having joined the msg board. Thank you for the info! Anything else would be most helpful. Send everything my way as I am a desperate newbie.
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Annette
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Re: I feel I have had a lobotomy without anesthesa
« Reply #6 on: Jan 8th, 2008, 7:32pm » |
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http://www.ouch-us.org/index.shtml
If you click this link you will get to the OUCH-US website it has a lot of really useful information from recommended CH experienced doctors to forms to print out for work and family/friends to various meds used for CH.
http://www.med-owl.com/clusterheadaches/tiki-index.php
This link is also a good source of information especially on supplements such as Taurine, Melatonin, Kudzu etc ...
Spend as much time as you can reading this site too and post any specific questions you have and someone with practical experience/knowledge will come along to help with an answer.
There are a lot of information you can bring to your docs to discuss a treatment plan for you but first you should try to get an appointment with one who is experienced with treating CH.
Hang on there, it will get better.
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AussieBrian
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Re: I feel I have had a lobotomy without anesthesa
« Reply #7 on: Jan 8th, 2008, 7:32pm » |
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on Jan 8th, 2008, 7:15pm, sfgirl69 wrote:| Apparently just because they are a neurologist doesn't mean they know how to handle them. |
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Truer words were never spoke, darlin'. Dunno what it's called in your country but here we say 'doctor shopping' and you just keep hunting until you find a goodie and either marry him or take his children hostage.
Absolute best of luck and we're on your side.
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maryo
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Re: I feel I have had a lobotomy without anesthesa
« Reply #8 on: Jan 8th, 2008, 10:12pm » |
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You know how much pain you can or cannot cope with. DO NOT ACCEPT a situation where you have pain beyond your coping ability. We cannot cure clusters but there are tools to minimize their impact on our lives.
Re: Oxygen. Doctors, nurses and EMTs operate on "evidence-based" medicine rather than what they theorized or learned in school. Medical literature is replete with evidence that what works for ch is 100% oxygen, which you can only obtain using a non-rebreather mask at a high flow (10-15 liters per minute). I just visited NYC and had my doc call in a prescription to a medical supply company there, and the guy that answered the phone knew that clusters need lots of oxygen. They delivered to my hotel room!!! So it's just not something only a few of us know. It's common knowledge.
I have tried it both ways -- put myself at the mercy of the doc, and the other way -- explaining what I'd found out and what I wanted to try. In my mind, it's me who's the expert on clusters, not the doc!!!!!! I just had to break in a new doc. What a pain! One way to get a response to your cluster situation is to gather solid information. Print out pages from ouch, ch.com, emedicine.com and http://www.ncbi.nlm.nih.gov/sites/entrez. Compose a cover memo, and fax it all to your doc along with the request for a meeting or phone call to discuss the options. This fax will go into your medical file. This is how doctor's offices communicate all the time. This way they get educated (while saving face) and you can have some control over the situation, which you should have. If the doc's the type who needs be a know it all, it's gonna be frustrating. (Might you ask, "What is your experience with people who have cluster headache syndrome?"
Also, I found it helpful to stress in my call to the physician's office that I was despondent, which was true, and soon as the word left my mouth the tears started to roll and my voice quavered. All treatment providers are scared to death of someone suiciding on them, especially if there were warning signs. Not that that's what I'm suggesting but if you are desperate they should know, and it will help get you taken more seriously.
The first doc who helped me, I told him I had to have a drug on hand for those times when I felt like driving into a tree. He wrote the scrip without batting an eyelash. I never took one. It was just my safety net. It meant so much to me at the time, after 20 years of non-diagnosis, for him to take me seriously.
Sorry for the long post but I just went through the most painful and frustrating month of my 27-year history of cluster headaches, and this is what I've found out the hard way. I did have a good doc (29 years) but he retired.
Good luck!
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #9 on: Jan 8th, 2008, 10:48pm » |
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Okay, after all the support I have gotten today I have taken the pain in my own hands as it were. I called doctors until one agreed to see me TOMORROW!
I am going to demand 15LPM oxygen tank and non rebreather mask along with Imitrix.
I am going to print out some of the pages from the OUCH website.
Is there anything else I should bring and ask or even TELL my doctor that I need?? Sorry to sap up so much time but I can't tell you what strength you all have given me. THANK YOU!
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E-Double
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Re: I feel I have had a lobotomy without anesthesa
« Reply #10 on: Jan 8th, 2008, 11:36pm » |
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google todd rozen for literature RE: high flow oxygen
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Crappy
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Re: I feel I have had a lobotomy without anesthesa
« Reply #11 on: Jan 9th, 2008, 12:07am » |
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Yes, in addition to the imitrex and O2 as abortives, you need preventives to reduce the frequency of attacks. These are usually started along with the prednasone tapers, because they kick in by the time the prednasone ends.
Most people use Verapamil plus either Topomax or Lithium. There is a PDF file from DR Rozen available on the Headache Links page - Bob_Johnson will probably post it shortly if he sees this post, otherwise look for it on this site for dosage information. I can't copy links on my iPhone. Keep in mind that effective dosages for clusters are highernthan normally prescribed for those meds. I know my neuros started me at 100mg topomax and 120mg verapamil, but quickly doubled that when it wasn't working. Up to 400mg topomax and 480mg verapamil is used, I believe, but don't quote me.
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Annette
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Re: I feel I have had a lobotomy without anesthesa
« Reply #12 on: Jan 9th, 2008, 1:05am » |
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http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;acti on=display;num=1194921728;start=14#14
This is the thread with video clips of people taking a hit. Short of having one yourself in the doctors office, this is more powerful than a thousand words.
If you have a laptop, you can download these files into it and show it to the docs.
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #13 on: Jan 9th, 2008, 2:34am » |
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OMG! That was very hard to watch, I hope my doctor feels the same and gets it. Thanks for forwarding along.
I now think that I have done myself a disservice in that I have been hiding them from my husband as best as possible and trying to not complain or whine about it. Now I see how important it is to have that support. Don't get me wrong he is great, the best and would do what ever it would take to make me feel better. But I have been good at hiding it until this year when we started working together. Now I guess the jig is up and I have to come completely clean. I just don't know how to explain it without sounding like a hypochondriac or crazy. I have had him read the www.Mayoclinic.com article but it still doesn't really explain what I go through. The crappy part is there isn't anything he can even if he wanted to is there? He does keep the ice packs coming though!
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Annette
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Re: I feel I have had a lobotomy without anesthesa
« Reply #14 on: Jan 9th, 2008, 2:48am » |
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I now have video clips of my husband taking hits, I took it with me to doctors, specialists, hospitals ..... and I showed whoever was taking care of my husband at the time and I can tell you 2 mins of watching/hearing him taking a kip 10 got them scurrying to give him whatever he needed. Before I had to argue/beg/threaten my way through red tapes and prejudice.
Please tell your husband to come to the Board, so he can get support for himself too. Its very difficult for him at times. Most of the time as supporters we cant do much at all but making sure that ice is available, that redbull is stocked up, that the oxygen tank is still full and the mask is clean, or just to run to get a fresh wet towel .... Supporters often feel helpless and frustrated because there isnt much we can do, but then its the little things that count and to be able to hug our beloved CHers at the end of a hit and to hear the word " thank you" is enough to help us through another day .....
HUGS
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mikeh
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Re: I feel I have had a lobotomy without anesthesa
« Reply #15 on: Jan 9th, 2008, 4:27am » |
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I am also a newbie to CH. I started my cycle in late October and it hasn't let up since. I found this site early on and I will attest that the folks here are very knowledgeable and caring people. Listen to them!
I am very fortunate, in that my doctor (Kaiser), has a good understanding of what CH is. He diagnosed me quickly and got me started on the Maxalt melts as my abortive. I have found Maxalt works well (most of the time) to bring the pain to a bearable place and sometimes completely eliminates it, usually in about 15 to 20 minutes. I can't stress the importance of getting the medication and oxygen going at the first twinge enough. I have also tried Imitrex nasal spray, but for me, the Maxalt seems to be more reliable and gets into gear quickly enough.
Oxygen is also really helpful for me most of the time. I keep mine next to my bed, with the non-rebreather mask hanging right there, regulators pre-set. (Guiseppi is right - the nose cannulas are worthless - you need a non-rebreather mask). At the first sign, I pop a Maxalt and get the mask on and open the valves - hopefully, all within the first minute. Non-rebreather masks are available from a local (I'm over here in the east bay) medical supply house. $5.00 each. Evidently Kaiser has reservations about prescribing Oxygen at 15 liters/minute, so the way my doc got around it was to set me up with a half dozen "E" bottles and TWO "0 - 8" liters/minute regulators. The two regulators are each set up on a bottle that then connect to a "Y" fitting that runs to my mask. I simply turn on both tanks at the same time and can get up to 16 l/min. Usually, within 15 minutes I am back in he real world. I can't tell you if it was the maxalt or the oxygen that did it - but I don't care - the pain is gone or at least becomes tolerable until the Maxalt takes hold.
My doc has very recently prescribed one of the Beta-Blockers (Metoprolol) for me as a preventative, so we'll see how that goes, and I am scheduled to see a neurologist in a couple of weeks.
My wife is also very supportive and often opens the Maxalt packet while I get the oxygen going or will make the ice pack for me. Having her understanding and support is a real bonus.
Hang in there. Find a doctor that actually cares enough to work with you to get a program going that works for you. I know ho tough it is when the devil is asking you for a dance, but you can beat him down if you put in the effort.
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #16 on: Jan 9th, 2008, 7:18pm » |
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Okay so I went too the doc and here is what we came up with for a management program.
1) 15lpm of oxygen + non-rebreather face mask
2) Inject able Imatrex
3) Prednisone - 2 months
4) Verapamil to take in conjunction with the Prednisone
5) Butalbital
Thanks to everyone for your kind words and knowledgeable guidance. I wouldn't have this game plan if it wasn't for you. Heck I wouldn't have hope if it wasn't for you.
Wish me luck!
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AussieBrian
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Re: I feel I have had a lobotomy without anesthesa
« Reply #17 on: Jan 9th, 2008, 7:39pm » |
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on Jan 9th, 2008, 7:18pm, sfgirl69 wrote:| Thanks to everyone for your kind words and knowledgeable guidance. I wouldn't have this game plan if it wasn't for you. Heck I wouldn't have hope if it wasn't for you. |
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That's what we're here for. Now, regarding the oxygen, it's important to use it safely and to get onto it immediately you even think you're getting hit. It's far less effective if yon beastie can get a toe-hold. Plenty of info on the oxygen button just to the left.
Also look at the button marked "immitrex tip" as it may help you save money.
Rembering always that the most effective weapon your armoury is knowlege and the most hurtful to the beast is a positive attitude. This will end, sweetheart, it always does.
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Melissa
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Re: I feel I have had a lobotomy without anesthesa
« Reply #18 on: Jan 9th, 2008, 8:08pm » |
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Looks like a great game plan except for this:
on Jan 9th, 2008, 7:18pm, sfgirl69 wrote:
What is this and is it a narcotic? If it is a narcotic, I strongly recommend it not be used to treat your CH pain. The other things you listed are great weapons and will be helpful.
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Ray
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Re: I feel I have had a lobotomy without anesthesa
« Reply #19 on: Jan 9th, 2008, 9:26pm » |
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Butalbital is a barbituate and is used to treat tension headaches. Beware, this is addicting and barbituate withdrawl is supposed to be the absolute worst withdrawl.
Ray
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #20 on: Jan 9th, 2008, 9:29pm » |
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Hi,
From what I have looked up on the web here is the explination as to what it is. I am sure this sounds stupid
but what does a narcotic do? It doesn't say it is a narcotic on it though. I don't know the difference between a barbiturate and narcotic?
BUTALBITAL/APAP/CAFF/COD 30MG CAPS
Common Uses: This medicine is an analgesic, barbiturate, and stimulant combination used to treat tension headaches.
....geez i am sure you guys must think I am an idot. I am new to this game SORRY! Any and all thoughts please!
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rocketman3104
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Re: I feel I have had a lobotomy without anesthesa
« Reply #21 on: Jan 10th, 2008, 10:07am » |
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Alot of narcotic type pain killers (barbituates) will trigger cluster headaches.
Most of us stay away from them (narcotics) because they:
1) have been known to cause cluster h/e.
2) narcotics usally dont work for cluster h/e, don't even touch them.
Glad you got to a doctor that listens.
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jpa
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Re: I feel I have had a lobotomy without anesthesa
« Reply #22 on: Jan 10th, 2008, 3:50pm » |
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I wouldn't recomend the butalbital. It is addictive and for me anyway it triggered alot of rebound headaches. 
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AussieBrian
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Re: I feel I have had a lobotomy without anesthesa
« Reply #23 on: Jan 10th, 2008, 7:19pm » |
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on Jan 9th, 2008, 9:29pm, sfgirl69 wrote:| ....geez i am sure you guys must think I am an idot. I am new to this game SORRY! Any and all thoughts please! |
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The only silly question here is the one you should have asked but didn't. Just keep 'em coming and we'll help you any way we can.
Great to hear you've got a good doc, too.
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sfgirl69
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Re: I feel I have had a lobotomy without anesthesa
« Reply #24 on: Jan 10th, 2008, 8:31pm » |
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Thanks for making me not feel like a complete idiot Brian. Especially in the middle of thinking I am losing my mind or wanting to blow it off.
I think I kind of scared my doctor sitting in his waiting room rocking back and fourth with ice on my head and wild eyed. I think I am lucky he didn't call the big men with the armless white jackets LOL.
I do have more questions since you have been so kind as to not make me feel like a fool.
1) My "shadow's" if I am using this correctly feel like someone has taken my head and banged it against the cement 4-5 times then set it on fire from my neck up.
This part does NOT go away at all during my episodes. Is this what happens to everyone to all of us?
Of course the pressure in the eye and nose thing is also always there but really who cares about that when your head is on fire. I go through more ice the Studio 54 on a Saturday night.
2) Has anyone had the surgery that I have been reading about and what was the outcome?
I am not sure how to handle she shadows if the pain killers are more of a killer pain. I don't have the least bit of addictive personality but I sure don't want to have them be the cause of another hit.
SO 3
3) Given that I am on prednisone, 80mg (I weigh 100lbs so is this the right amount? I guess this is 3A) am I still at risk of have the pain meds cause a cluster.
I am taking the pain meds to take the head on fire and bruised brain feeling away. I can't function with it and live with it 24/7. Trying the water and coffee thing. Can't do red bull, I don't even drink soda. But this is just for the hits not the shadows right???
THANKS AGAIN!
sfgirl69h
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test rss