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Title: Permanent damage from CH episode? Post by pieface_49 on May 2nd, 2007, 9:45pm On March 9th I took a Tegratol XL in hopes it would help my CH episodes. My diagnosis at that point in time was Trigeminal Neuralgia. Nothing was working and I had the Tegratol from the previous year. 8 hours later I was in an ambulance heading to the ER. That morning was the worse episode I had ever experienced. I had some Kip8-9's during the following weeks, but nothing like that morning. The episode started at midnight and subsided around 5am. My cycle seemed to end March 27th. A couple minor hits during the following two weeks, nothing to consider much. I have had migraine's every day since that episode on March 10th. It is starting to get scary, pain all day in the back lobes of my skull. Sometimes a quick lancing stab on the left rear side. I wake in the morning with a sore head (rear) and it is not going away. Anyone experienced anything like this? And, no, I have not seen a Doctor about it yet. Considered doing so today and will definitely do so tomorrow. Donnie |
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Title: Re: Permanent damage from CH episode? Post by Brewcrew on May 2nd, 2007, 9:55pm on 05/02/07 at 21:45:56, pieface_49 wrote:
You really need to. I have no clue about any of this. There's only one doc at this site that I know of, and I know for a fact that she won't diagnose you without examining you. Best of luck. |
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Title: Re: Permanent damage from CH episode? Post by LeLimey on May 3rd, 2007, 4:29am You are in this diabolical pain that is so bad you need to go to an ER. You don't have a diagnosis of CH and with over 600 headache types some overlap so a correct diagnosis from a headache specialist neurp is imperative. You're taking meds from last year that could do more harm than good - for some headache types the wrong meds won't just not make the pain go away - they will KILL you. Do you not realise how much worse than CH this could be? I cannot understand why you haven't gone to a doctor, at the very least you need an MRI to rule anything insidious out.. For heavens sake get to a doctor, we aren't doctors, we can't tell you what to do and we can't prescribe - why the hell are you talking to us INSTEAD of the medical profession? |
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Title: Re: Permanent damage from CH episode? Post by Samiam on May 3rd, 2007, 9:29am Donnie, Tegratol is an anti seziure drug which I believe needs to build a level for it to work. Taking one will not do anything other then maybe cause you a big problem due to a reaction. I for one can't touch it. Been there done that. Do you have 02 on hand? That would be the only thing I would use until I was given the right meds. Not to mention you don't even know for sure if this is a cluster cycle there could be more wrong if things have changed. A 5 hr cluster is rare and if this has changed in anyway I would be at the Doctors right away. Keep us posted but get to a Neuro. Sami |
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Title: Re: Permanent damage from CH episode? Post by JeffB on May 3rd, 2007, 8:37pm Go to a Doctor! |
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Title: Re: Permanent damage from CH episode? Post by pieface_49 on May 4th, 2007, 8:37pm Thanks for replying y'all, A little history. The CH episodes started in 1993, lived with them that year. A year later they came back and went to ER due to them. Was to a Neuro in 1994 twice. The diagnosis was CH. Whatever meds they gave me stopped or helped the CH. The cycles back then were short and only in 1994 was there a couple Kip10's, thus the ER visit. I did not have another episode until 2003. Was to many different Docs in 2003, including my current Neuro. I completely forgot what my diagnosis was in 1994. The Neuro stated I had Trigeminal Neuralgia. Oh ya, in 2003 I had two teeth pulled in an attempt to stop the pain, then I had all my upper teeth pulled. Needless to say the teeth got pulled for no legit reason. The Neuro kept persisting it was Trigeminal Neuralgia through February 2007. Thus, all the wrong meds for many years. In March of this year it had gotten so bad I had to find a solution myself. During my study during Feb/Early Mar I came across something called Sphenopalatine Neuralgia. The symptoms were very close to what I was experiencing. I studied Sphenopalatine Neuralgia and took the paperwork to the Neuro's office March 9th. I left with her saying it is Trigeminal Neuralgia and here is some Neurontin and Loricet Plus. She wanted me to get an MRI, but I was so upset, I told her no. I had two MRI's since 2003, both prescribed by her and a CT Scan. I had to find out, so I called her back and succumbed to another MRI. The MRI was once again negative. So, abnormality of the brain or tumor was once again ruled out. I have Health Coach's available through my insurance. I started using them and one day the Health Coach suggested CH. Two days after the Health Coach brought up CH (March 24th) I awoke and CH was heavy on my mind. I googled "cluster headache" and my first mouse click was http://www.clusterheadaches.com I read the opening testimonies and broke down in tears. After 4 years of suffering, I finally found people who not only were experiencing what I was, but, most importantly understood! That same day, I went to my GP with the medical info to the left printed and a 100% score on the cluster quiz. My GP ignored the medical info and prescribed Indocin. I had not been CH free for many weeks and a day after taking the Indocin, I had a PF day. I continued taking the Indocin for about 4 days until it started upsetting my stomach. I can only wonder if my cycle was ending or it was the Indocin that helped? My last Kip10 and a trip to the ER was March 10th. I knew nothing of CH and started drinking (12:30am) in an attempt to stop the pain. An hour later I was in an ambulance. I believe the alcohol not only made the CH worse, but made it longer in duration. The hits since that point in time were normally 5-20 minutes, sometimes a little longer, but nothing compared to a Kip10. On April 9th I went to the Neuro's office armed with information on CH. I even told her with my symptoms "how could she keep diagnosing me with Trigeminal Neuralgia?". I was angry as hell and it showed. Seldom do I get so upset that I shake. I was shaking and talking nervously. Fired up to say the least. Without her saying "You have CH", I left with scripts for O2, Imitrex and Verap. My cycle had ended, so I have not been able to try those meds/solutions. The Indocin helped but, did it help break my cycle? I do not know. I can say suffering for 4 years and taking all the wrong meds turned me into a desperate human being in search of a solution and an answer what was wrong with me. Two days ago I took 2 aspirin and since have had little of the migraine issue. Since March 10th, the worse day I have ever had concerning CH, I still am getting minor hits. Today I had a Kip3 that lasted about 45 minutes. I was grateful it ended and got no worse than Kip3. Foolishly, I had no Energy Drink at work. I drank the one I had a couple weeks ago and after half the SoBe, the hit ended. I know the length of some of my hits were not within the range of what is normal in CH. There are good reasons why and one of them is I drank or took pain meds to stop the pain. My mind thought taking a shot of whiskey would sometimes stop the pain. Sometimes the pain subsided after taking a shot. So, often during bad hits, I would drink. My worse episodes would occur when I drank. Needless to say, it was a vicious cycle. I hope and pray the medication I currently have as well as the info concerning CH helps. Because I am experiencing day long migraines I am beginning to question sleep apnea is another medical issue. Tomorrow I will see my GP concerning sleep apnea. That is another long story. Thanks to all for their help. Donnie |
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Title: Re: Permanent damage from CH episode? Post by BB on May 4th, 2007, 9:34pm Hi Pieface I am sorry to hear you are suffering and in pain and that you still dont have an answer that you are prepared to accept. Also thank you very much for sharing your history, it helps us understand your situation a bit more. However, there are a few things that rang an alarm bell for me and I would like to share them with you so that you can mull over them. Firstly I find it hard to understand how you could have had kip10s in the past where you ended up in ER yet you forgot about it ? As far as I know, CH pain is VERY different from any other type of head/face pain and once you have experienced it, its almost impossible to forget. I heard of people who had had remission for 10 years plus recognising the pain and the symptoms the minute it returned. This makes me wonder whether the pain you are feeling now may indeed be different from the pain you experienced in the past ? Therefore there maybe a chance that what you have now is different from what you had then. My second concern is that you seem to have your mind fixed on CH, almost as if you want to have CH. You get upset and angry at the neurologist who wouldnt give you the CH diagnosis. There are hundreds of conditions that come under the same category of Trigeminal Autonomic Neuralgia including CH, trigeminal neuralgia, SUNCT, migraines, Hemicrania etc. They all have similar symptoms and many cross over so the differential line can be very small. Hemicrania responds so well to Indocin that it can be used as a diagnostic tool in many people. The fact that you stopped having hits on Indocin made me wonder. If you have full blown CH and are in a middle of a cycle, Indocin alone is very unlikely to be able to break it. There are many contradicting things in your post. One is that you believed your cycle had finished because you were painfree, then you said you drank alcohol to cope with the pain ? What pain is this then? Another is that you said your cycle had finished so you didnt have a chance to try the oxygen, the verap and the imitrex injections the neurologist gave you, then later you said you are still getting minor hits around K3-4 and needing energy drinks to abort them? Then you say you are now having day long migraines but taking 2 aspirins stop them ? The worst was although earlier in the post you admitted that drinking alcohol landed you in ER and that your worse episodes occur when you drink, a bit later you said you take shots of whiskeys during a bad hits to stop the pain ? If you really have CH, drinking whiskey during a bad hit would more than likely kill you because they increase vasodilatation. All in all, you keep diagnosing yourself, jumping from Sphenopalatial neuralgia to Ch to day long migraine and now to sleep apnoea. You self medicate with pain killers and tegretol and alcohol. You havent tried verapamil and oxygen and imitrex. You refused to follow medical advices from your doctors. If you are not happy with the docs you see, then change them. There is little sense to keep going to the same ones then ignore their advices anyway. You are indeed a very confused person right now and I think you confuse yourself more and more each day. It would be best if you 1- Stop drinking alcohol 2- Stop self medicating and self diagnosing 3- Start to listen to your doctors or look for new ones. Go to those who are experienced in treating headaches. 4- Stop insisting that you have CH until a neurologist can confirm for sure for you, you may not. Good luck with it all and painfree wishes to you. Annette |
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Title: Re: Permanent damage from CH episode? Post by ClusterChuck on May 5th, 2007, 10:01am on 05/04/07 at 21:34:06, BB wrote:
Annette, this guy has some serious problems. His story constantly changes. He contradicts himself, all the time. I have gotten where I don't believe anything he posts. His problems ARE in his head, but may not be the supposid pain that he SAYS he has. Why anyone would want to be a clusterhead, is beyond me. His story now is that he "forgot" that he was diagnosed as a clusterhead? YAH! RIGHT!!! Like I am going to believe that! Chuck |
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Title: Re: Permanent damage from CH episode? Post by pieface_49 on May 5th, 2007, 3:13pm Hello Annette, thank you for your responses on 05/04/07 at 21:34:06, BB wrote:
I did not forget the pain, nor the experience back in 93-94. I forgot the diagnosis. The pain and symptoms were identical back then as they are today. Absolutely, no different. It took 4 years to remember vividly those past years. I remember pushing on the dash on the way to the ER. I remember being so upset in the ER that I punched a wall in order to be recognized. I remember walking out of the Neuro's office being puzzled over what is CH? Since 2003, my current Neuro never mentioned it and had me sidetracked on Trigeminal Neuralgia. Quote:
You would not understand unless you were misdiagnosed and had CH 2 cycles a year for 4 years. I just looked at the script for O2 from my current Neuro, the same one I have had for the past 4 years. Don't know what 346.21 is? DX: Cluster H/A 346.21 Quote:
I am sorry if things sound contradictory. I drank during cycle because I did not know any better. I did not how to stop the pain, so I drank being ignorant of the fact. Quote:
Yes, minor hits, all at work. I do not need meds at K2-3. Especially if they are 20 minutes in duration. That, I can live with. The one that lasted 45 minutes was stated to be Kip3. Quote:
They appeared to help. Who knows with me. This thing keeps morphing. This is my 3rd day without the migraine. Was it the aspirin? I do not know. Quote:
I will never, ever take a drink again during an episode or during cycle. I can't stand whiskey. I was not drinking to get drunk, I was drinking to kill the pain. I was ignorant and most importantly, almost in shock due to the pain. Scenario: Kip8 pain, no O2, no Imitrex, absolutely, nothing but useless meds and pain pills. Mind is scattered. What do I do to stop this pain? Quote:
You are 100% wrong here Annette. I was following the Doc's advice. I believed them for 4 years. Most importantly, my Neuro. I was not self medicating with Tegretol, Neurotin and other meds. I was following their advice. Their advice failed. Quote:
I do not disagree with you. Smoking as well. Quote:
I wish the misconception that I am self-medicating would go away. I do not disagree with the fact I am self diagnosing. It is so difficult to put into words. This is as simple as I can put it. It is imperative I learn how to stop or lessen the pain. Quote:
I do not know of any Doctors in this area who specialize in headaches. One of my options is to move to Pittsburgh, or Michigan. Pittsburgh would mean leaving my job of 18 years and starting over. Michigan would mean I could be close to a clinic (120 miles) and stay with the same company. I have considered both options and will continue to consider both. Where I live and work, I am blessed to have people understand what I am going through. Elsewhere, they may not be as understanding. Especially, starting anew. Annette, I take what you write to heart. You and many others have told me to slow down and think. I apologize for some of what I have written. I promise to only partake if I have found something that may be helpful and stop posting while I am researching. I will stop getting into posts where my post is done intentionally to upset or rebutt back. I have intentionally posted knowing it would upset someone or a group. Quote:
Thank You, Donnie |
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Title: Re: Permanent damage from CH episode? Post by BB on May 5th, 2007, 9:21pm on 05/05/07 at 15:13:57, pieface_49 wrote:
If your current neuro of 4 years wrote Dx: Cluster H/A on the script it means she has diagnosed you with cluster headache. Dx is medical short hand for "diagnosis". Who cares what the number is, is not relevant to you filling the script. I guess it would be some form of codes for the pharmacy or insurance company. Now go get the oxygen, imitrex and verapamil and start on them please. If you are still getting Kip2-3, you are not out of cycle yet. You should follow your neuros advice and start the meds now and stop thinking about migraines or sleep apnoea or anything else for now. Oxygen and imitrex do help with migraines anyway. Focus on what you have now, spend time writing up a headache diary as detailed as you can for your doctors, instead of jumping in here posting. You are wasting your time and ours. You look after yourself first. Once you get your headaches under control and you have no more pain then you will have a clear enough mind to post to help others. Step away from the keyboard while you are in pain and your head is foggy, because you are likely then to post something that you later will regret or someone will find offensive. I sincerely hope that you will find oxygen and imitrex help to abort the headaches and verapamil will help to prevent them from coming. Remember that not the docs nor anyone else can help you unless you start to help yourself first, and that means doing the right things: 1- No more alcohol 2- If possible, stop smoking too as you have mentioned yourself 3- Eat well, 3 balanced meals a day 4- Drink plenty of water, at least 2-3 L per day 5- Have a good sleep hygiene, go to bed early and get up early, aim for 8-10 hrs sleep each night 6- Stop thinking of other ailments, put them all on the back burner until much much later, you may find once the headaches are under control, you will no longer have them, if you still do, then you can take care of them then 7- Focus on doing one thing of a time only, dont scatter yourself everywhere 8- Slow down on posting, just read read read for a while and keep a detailed headaches diary : when, how long, what the pain feels like, what helps etc and bring it to your docs next time. 9- If you find yourself panicking or your thoughts wandering too much then consult a psychiatrist/psychologist or a counsellor. I am sure if you can do all that, you will feel a lot better and much more in control. Take care now and painfree wishes to you. Annette |
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Title: Re: Permanent damage from CH episode? Post by pieface_49 on May 6th, 2007, 1:02am on 05/05/07 at 10:01:27, ClusterChuck wrote:
I love you too Chuck :o |
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Title: Re: Permanent damage from CH episode? Post by UN solved on May 6th, 2007, 2:34am I can't add anything more to the excellent replies you've already gotten from Annette. What I will add: I fly back and forth to my doctors appointments. It's really not that much cash. Not so much that it wouldn't be worth it to see a doc who knows headaches and can help. I'd be willing to bet you have more cash than I do too ::) ... so make your appointment and schedule those flights. If it's not worth it, then your headaches aren't that bad. ::) PF Wishes UNsolved |
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Title: Re: Permanent damage from CH episode? Post by JohnC on May 6th, 2007, 8:15pm Dude there is no fucking way you could EVER forget a kip 10 |
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Title: Re: Permanent damage from CH episode? Post by clusterwife on May 8th, 2007, 9:13am Oh yes, we have walls with holes punched by my hubby, broken furniture from his seizures, and he constantly appoligizes for the damage. But, I luv him anyway! Leah. |
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Title: Re: Permanent damage from CH episode? Post by clusterwife on May 8th, 2007, 12:48pm on 05/02/07 at 21:45:56, pieface_49 wrote:
sorry, hope it gets better! |
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