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Topic: HI, I´m new to all of this. I need help (Read 364 times) |
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couso
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HI, I´m new to all of this. I need help
« on: Mar 24th, 2004, 11:54pm » |
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 Hi everyone,
I have just been diagnosed with cluster after two years of suffering and missdiagnostics. I was diagnosed with sinusitis. My nose was really ugly because I had two fractures, so I went into surgery last month. I was suffering from a lot of pain in the left side of my face, with a lot of nasal congestion, so I thought that surgery will end it. To my surprise three days after surgery the pain started again, so two weeks later (desperated) I came into the web to try to find an answer. I discovered that I may be suffering from cluster, so I went to a neurologist who told me that it was true. My problem is that he also uncovered a hypothiroidism. I had high blood pressure, palpitations, high heartbeats, etc. (That I hadn't even noticed.) Now, I'm been treated by an endocrynologist also, and he says I can not start taking any medication for cluster until my thiroid is kind of fixed. I have continued reading, and I think my cluster is chronic, because I've had pain for the last two years without any rest. My pain is almost always at day time, and the other day I read something that said that chronic cluster is suffered mostly at day time without remission periods. But I forgot where I read it, and now I can't Find it. Does anyone please know what I'm talking about? I would like to take that information to my neurologist.
Thank you 
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couso
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It´s me again. I made a mistake.
« Reply #1 on: Mar 24th, 2004, 11:57pm » |
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I'm sorry I made a mistake. What I have is Hyperthiroidism.  
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Tiannia
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Re: HI, I´m new to all of this. I need help
« Reply #2 on: Mar 25th, 2004, 12:14am » |
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Welcome to CLusterville, Sorry you had to find us.
Read everything you can. Not sure about the specifics on chronics getting hit during the day time specifically. But to be Chronic you should be getting hit at least once a day with no more then a 30 day break contiguously. (ie 30 days PF all in a row) At least that is what I think it is. Mine only started in July and the longest break I had was 4 days but that was after I had a nerve block done. Read as much as you can from the buttonsand links to the left and on the OUCH Site. I dont know if there is a Mexico Chapter of OUCH, but you might be able to learn from the Italian Board as well.
I to have a issues with my thyroid. I have Hypothyriod and Hoshimodos Syndrom (thyroiditis). There is no corrilation as far as I know between Thyroid disorders and CH.
What is the Endocronologist giving you for the Hyperthyroid? Normally it is a daily dose of synthitic Thyroid, isnt it? That takes about 30 days before they can test your blood and see if you levels are normal. But they should be able to at least get you some sory of preventative for the CH or if nothing else O2. Make sure to print out everything and make copies for your neuro.
Glad to have met you Couso,
PF Wishes to you,
Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Superpain
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GOT O2!?
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Re: HI, I´m new to all of this. I need help
« Reply #3 on: Mar 25th, 2004, 12:22am » |
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Welcome.
Yep. O2 is going to be your best hope right now.
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Chris
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Luke63
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Re: HI, I´m new to all of this. I need help
« Reply #4 on: Mar 25th, 2004, 4:59pm » |
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Hiya...look to the left and read about Oxygen.....give it a try...many of us swear by it. Glad to see you're here...you've found the best support you'll find anywhere in the world....Welcome  ....Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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t_h_b
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Re: HI, I´m new to all of this. I need help
« Reply #5 on: Mar 25th, 2004, 7:15pm » |
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on Mar 24th, 2004, 11:54pm, couso wrote: I have continued reading, and I think my cluster is chronic, because I've had pain for the last two years without any rest. My pain is almost always at day time, and the other day I read something that said that chronic cluster is suffered mostly at day time without remission periods. But I forgot where I read it, and now I can't Find it. Does anyone please know what I'm talking about? I would like to take that information to my neurologist.
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I don't know about everyone else but I'm chronic and an hour after bedtime is a favorite time for an attack.
Is your pain constant throughout the day or do you mean you have had an attack or attacks every day? How long do your attacks last? Have you taken the cluster quiz at the link on the left?
Hyperthyroid is frequently encountered and relatively easy to treat.
If you have CH it's not clear why your neurologist couldn't start you on some preventative meds.
I can understand why he wouldn't want to give you abortives that affect the neurovascular system while you are still showing symptoms of hyperthyroidism. However, I agree with the others that there is no reason for him to not prescribe oxygen, one of the top abortives.
It's really cool that you got your insurance to pay to fix your "really ugly nose" though I bet you would rather have kept the nose and not had so much pain.
Hope you can find some relief soon.
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| « Last Edit: Mar 25th, 2004, 7:19pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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t_h_b
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Re: HI, I´m new to all of this. I need help
« Reply #6 on: Mar 25th, 2004, 7:17pm » |
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on Mar 25th, 2004, 12:14am, Tiannia wrote:
What is the Endocronologist giving you for the Hyperthyroid? Normally it is a daily dose of synthitic Thyroid, isnt it? |
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That's really for HyPOthyroid. (decreased function).
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Tiannia
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Re: HI, I´m new to all of this. I need help
« Reply #7 on: Mar 26th, 2004, 1:54am » |
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on Mar 25th, 2004, 7:17pm, t_h_b wrote:
That's really for HyPOthyroid. (decreased function).
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No my father has hyper thyroid (ie it produces to much) and he is actually prescribed a higher daily dose of synthroid then I am.
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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couso
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Re: HI, I´m new to all of this. I need help
« Reply #8 on: Mar 29th, 2004, 3:15pm » |
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Hi, Its me again. Sorry for not having answered back before, but I spent a lot of time in labs and doctors offices. But now I think I can give you an update.
My endocrinologist is giving me tiamazole for my thyroid and propanolol for the high blood pressure and the other heart signs. He also told me that the propanolol should help me with my face pain and... (((IT DID!!!  ))) I have been free of cluster pain for one week today(after two horrible years).
I have to say that I still feel the shadow(I think you call it that (its like having the feeling that the pain is there, just waiting to start)), but when I have felt the attack starting I have taken two aspirins and it has gone back to just shadow (I don't realyy know if the aspirin has really helped or not, but the pain kind of stops).
The endocrynologist doesn't want the neurolgist to start me on any regular medication until all my lab exams are done, because he thinks that meds like veripamil could change my thyroid results. And tomorrow I have to go make a blood count (I think is called like that in english) to see if I'm not allergic to tiamazole, because if I am, my white cells count would go down, and I could be "open" to a lot of infections.
If that is OK and my thyroid levels are going down, he will stop the propanolol (cry, cry, cry) and then the neurologist will start treating me.
I'm trying to find a portable oxygen tank, so I can take it with me, because as I told you before most of my attacks are during daytime, and they can start at work, or in any "*#**##" place you can think of.
The only thing the neurologyst gave me is an emergency pill called (zolmitriptane) Here the commercial name is "Zomig rapimelt". He told me to try it during an attack, but Thanks God I haven't had one this week.
And, yes my insurance company paid for my nose job (because my nose really was (uuuugggglyyy), and I hope it pays for cluster labs, etc..
Thank you all for your support, you are marvelous.
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TxBasslady
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Re: HI, I´m new to all of this. I need help
« Reply #9 on: Mar 29th, 2004, 10:24pm » |
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Hi Couso,
Welcome to the board.
Hope you get what you need to iron out the problems you're having.
Let us know how you are doing.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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I adopted a Vietnam POW/MIA from El Paso, Texas! 
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