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Topic: WELCOME! (Read 49311 times) |
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LeLimey
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Re: WELCOME!
« Reply #200 on: Aug 19th, 2006, 4:57am » |
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Hello Kazzie its nice to meet you!
Has the doctor given you any meds yet or has he referred you to a neuro? Don't worry, we're going to do all we can to help you. 
Helen
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kazzie
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Re: WELCOME!
« Reply #201 on: Aug 19th, 2006, 7:20am » |
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Hi Helen,
I've been given 3 different things! I was on holiday when they started so saw a different doctor to my usual one. The first was maltex melt which I was to use when I got a headache...that did nothing so was then given something beginning with v (not much help I know but my own doc kept them as didn't think suitable) they were more for heart conditions so not sure why I was given them. My own doctor yesterday gave me Amitriptyline which apparantly is a low dosage of anti-depressant which he says can be effective in preventing the headaches. I took 1 last night but did get a headache this morning. It wasnt as intense though so maybe helped? I do however feel spaced out and weak which I guess is due to the tablet. I'd really appreciate any advice!!
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Charlotte
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Re: WELCOME!
« Reply #202 on: Aug 19th, 2006, 10:07am » |
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on Aug 19th, 2006, 7:20am, kazzie wrote:Hi Helen,
I've been given 3 different things! I was on holiday when they started so saw a different doctor to my usual one. The first was maltex melt which I was to use when I got a headache...that did nothing so was then given something beginning with v (not much help I know but my own doc kept them as didn't think suitable) they were more for heart conditions so not sure why I was given them. My own doctor yesterday gave me Amitriptyline which apparantly is a low dosage of anti-depressant which he says can be effective in preventing the headaches. I took 1 last night but did get a headache this morning. It wasnt as intense though so maybe helped? I do however feel spaced out and weak which I guess is due to the tablet. I'd really appreciate any advice!! |
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Sorry to meet you here, but welcome aboard.
The maxalt melt is an abortive. It doesn't work for everyone, but if you use it at the very beginning it does work better.
The v is probably Verapamil. It is a preventative which works for many people, but not all. It takes a while to get into your system.
The antidepressant also works for some people and takes time to get in your system.
Since ch and related headaches are rare (in the medical community but not here), most of these medications were found to help as a side effect to the original purpose. Many vascular and anti seizure medications may help. Finding a treatment plan may take awhile. Sometimes the cycle is actually over before you have a working plan.
Did anything give you relief?
If not, ask the doc about 02 and injectable imitrex, next.
Charlotte
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jenhogan
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New kid
« Reply #203 on: Sep 3rd, 2006, 10:09pm » |
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Hello everyone, I'm back again after a few years departed.
I'm Jen, the wife of CH Doug. We have been married for 13 years, and have 3 kids...Doug has been a cluster headache sufferer for 8 years.
I guess that's all for now. I'm just looking for a way to network with some people who understand what he and I go through. He is in a long cycle right now, as this is the absolute worst time of year for him.
I was wondering, is it typical for the peaks to happen seasonally? August and September are always really bad for him.
Thanks everybody! I'm glad to be back.
JenH
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Richr8
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Re: New kid
« Reply #204 on: Sep 26th, 2006, 11:30am » |
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on Sep 3rd, 2006, 10:09pm, jenhogan wrote:I was wondering, is it typical for the peaks to happen seasonally? August and September are always really bad for him.
JenH |
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Seasonal attacks are very common for episodic sufferers. For fifteen years my attacks have always occurred in the fall (Sep-Nov). I did have one rogue cycle in the sumer of 2005 following an injury to my neck. Unfortuntely, my typical fall cycle still occurred although a little later than normal.
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pf wishes,
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TxBasslady
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Re: WELCOME!
« Reply #205 on: Sep 26th, 2006, 12:12pm » |
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Hi Jen,
There's an area on this board where you can interact with other supporters, it's the "Supporter's Corner".
There's some great posts there...and lots of supporter's who give their idea and thoughts on how they support their significant other.
Welcome back...
Jean
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Ozark_E
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Re: WELCOME!
« Reply #206 on: Oct 6th, 2006, 12:15pm » |
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Hello, I am the newest of Newbies.
But I am not new to Clusters. I am in my 6th cycle since 1993. From onset they had generally recurred every 24 to 28 months, with cycles lasting 5-8 weeks. This past time, I had a 36-moth reprieve. I thought I was in the clear. Then about 3 weeks ago I started getting (non cluster) headaches every other day for about a week. And finally, the tell-tale red-eye, sinus-drain, cluster.
The doctors have been great so far. I got in to GP and the Neuro within a few days. That was all about 8 days ago. They started me on 60mg prednisone per day. I start tapering by 5mg per day today. They also started me on 50mg Topamax per day then. I start ramping up on it today. Within the first few days of the Clusters return, I successfully aborted a few onsets with Imatrex shots (full 6ml, perhaps overkill), and even with 25ml Imitrex pills. For the past 5 or 6 days, the prednisone and topamax have kept CH in complete check. I have had a few minor tinges in my temple, but have not needed imetrex at all.
Of course, as I taper off prednisone, I am concerned that CH will sneak back in. And as I ramp up on Topamax, well, I am concerned about the side-affects. But that is my boat for the moment. I just wanted to say hello, let folks know that I am managing ok, and that perhaps Topamax is doing some good for someone. We'll have to see. Hang in there.
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bleederbill619
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Re: WELCOME!
« Reply #207 on: Nov 13th, 2006, 6:36pm » |
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I'm glad I found this area; Previously, I thought I was suffering from migraines, but now firmly believe they are CH. Been a sufferer since early adulthood (I am now 49). The symptoms match anyway. It is truly amazing after reading so many letters that so little is known about this condition and treatment.
So, if I have a method of treatment that works for me, should I run it past Dr. Greg first or should I post a new topic in "what works" area?
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E-Double
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Re: WELCOME!
« Reply #208 on: Nov 13th, 2006, 8:42pm » |
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Hiya Bill,
Hope you're not still bleeding 
To be honest, I do not think that Doc Greg is still around.
Please feel free to post anything on what seems to be the appropriate board.
Good luck on your journey and please share your experiences and why you may now believe that you have CH.
Start with the Cluster Quiz though it is not a true diagnostic tool it is pretty damn close for us.
You may also want/need to find a Headache Specialist who is CH knowledgeable.
There are several HA types that present similarly yet differ in duration and responsiveness to medication so it is important that you receive the proper diagnosis so that you will get the appropriate treatment.
Good luck!
Ex2
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buffster
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Re: WELCOME!
« Reply #209 on: Nov 19th, 2006, 5:57pm » |
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Hello everyone. I am a 37 year old female. I have been pf for about 7 months. the ch is coming back again. I pray that it will stay away, but the tinge i feel is all so familiar. I don't know what to do, since i got a new job working at night. That's when the ch starts. There is no way i can get through this. I am raising 5 children and a grandaughter on my own. Any sugguestions would be helpfull. oh and my younger brother is also a ch sufferer. Wishing everyone a pf day.
Thanks, karen
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edbeek
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Re: WELCOME!
« Reply #210 on: Dec 7th, 2006, 10:15am » |
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Hi all, I've been suffering CH since 1985. The first 10 years were misdiagnosed and untreated(I lived 500km from doctor), followed by 5 yearly cycles successfully aborted with cafergot, and 5 years of complete remission.
I wasn't too concerned this year when I felt the familiar signs return. Cafergot will do it's job. But it didnt have any effect at all.
Thats when I started studying this site, and learning more about CH because from my past experiences, our doctors are clueless.
I had a short course of prednisone, which made my CH worse, and irregular during the taper.
Last doc visit, I was given Voltarin. I just shook my head and vowed never to return.
So I am again unmedicated and waiting for the cycle to finish. (been 7 weeks now)
I make a strong coffee as soon as the CH wakes me, and I find that the pain subsides a lot quicker. Most of my CH are Kip 7-9, but mostly only last 20-30 minutes.
I know I should seek better medical advice, but my nearest clueless doc is 100km away, and the nearest neuro of any description is 500km away.
Anyway that's my story.
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AussieBrian
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Re: WELCOME!
« Reply #211 on: Dec 7th, 2006, 11:37pm » |
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G'day Ed, and welcome aboard. Your story is just so familiar there's any number of us here could have written it. Glad you're getting some relief at least with coffee and there's lots of others attacking Red Bull with great results. Seems to be the caffiene and some other stuff called taurine that Barry in WA knows much more about than I do.
Either way, stay well and we look forward to hearing more from you.
Cheers and beers,
Brian up north.
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edbeek
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Re: WELCOME!
« Reply #212 on: Dec 8th, 2006, 4:06am » |
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G'day Brian, Thanks for your reply. I have tried RedBull a bit, when I was away from home and had no access to coffee. Maybe I wasn't catching the CH early enough, but the RedBull would ease the CH back to a shadow but it would quickly rebound bigger than before.
I find the frustrating thing about CH is the variability of the success of treatments. Sometimes a massage of my temple, or the knot in the back of my neck, seems to relieve it immediately, and next time it makes the CH worse. I got 2 PF days/nights with prednisone, but the next week was the worst of this cycle.
One thing I am pretty certain of is the frequency and severity of my CH episodes is directly related to how idle I am during the day. This directly affects how much I smoke. Luckily I have a pretty physical job, and smoke about 20/day. On these days, I usually only get 1 episode during the night. If I'm office-bound, i tend to smoke more, and then I will get at least 1 or 2 before bedtime, and 2 during the night, and wake in the morning with another brewing.
So I tend not to complain too much about my CH because I know I can make the biggest difference myself, if I would just give up smoking.
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AussieBrian
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Re: WELCOME!
« Reply #213 on: Dec 8th, 2006, 8:49pm » |
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on Dec 8th, 2006, 4:06am, edbeek wrote:| I find the frustrating thing about CH is the variability of the success of treatments. |
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Oh don't we know about that! Finally find the wonder-drug and complete cure and next time round not a sausage.
The upside is that treatments that have failed in the past might work this time.
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Barry_T_Coles
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Re: WELCOME!
« Reply #214 on: Dec 13th, 2006, 11:06pm » |
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Hi Ed
Barry from Karratha here, welcome to the best little nut house around.
There’s an absolute shit load of info here, what the people here don’t know about CH probably isn’t worth knowing.
I see you have tried the Red Bull, it’s a goer for me with the little hits when I get them now, the trick is to belt it down the throat as quick as you can & be icy cold.
Oxygen is my best abortive and works a treat for me, I have found a way around getting oxygen without having a prescription & the cost is comparable, if you want more info just PM me & I will pass the info on.
I’m chronic so I treat myself differently to what you may need but the principles are the same.
Cheers for now.
Barry
PS if you click on the Mushy's.com link at the bottom of this post it will take you to Mr Happy's site that holds the info on o2.
Cheers
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| « Last Edit: Dec 13th, 2006, 11:09pm by Barry_T_Coles » |
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edbeek
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Re: WELCOME!
« Reply #215 on: Dec 14th, 2006, 12:44am » |
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Hi Barry, Thanks for the welcome and the info.
You are right about this place. I've learnt so much in the last week or so. I think one of the most valuable thing I've learnt is how fortunate I am compared to others here, and I tell myself this during every CH attack.
I'm hoping my cycle may have ended as I've just had 2 PFdans, and it's been a 9 week cycle.
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tdow
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Re: WELCOME!
« Reply #216 on: Dec 22nd, 2006, 2:28pm » |
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I am new here. I recently have been diagnosed with Cluster Headaches. I have been suffering from episodic types for the past 6 or seven years (Or longer). but was finally diagnosed by the ER doctor on the 11th.
I get them every year at this time, but this year takes the cake (The most pain I have ever felt).
I have been put on hydrocodone for the pain, but that does not usually take it away, but it does dull it and helps my left eye from watering. My cat scans I had recently came back negative so my brain is clean.
I have not started any drug therapies, but I know I don't want to be hooked on narcotics for pain.
Does anyone have a suggestion or recommendation?
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Tom
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Redd
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Re: WELCOME!
« Reply #217 on: Dec 22nd, 2006, 2:43pm » |
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This scares me, because some docs are just idiots. Codine is not the way to treat CH.
Let us try to help get you sorted out, and make sure we know what we are dealing with.
Please take the cluster quiz on the left side there and let us know how you come out, and then please let us know how this particular beast effects you. How long are your cycles, how long is each attack, what behavior do you have when getting an attack, whats worked in the past for you to help east the pain?
We want to help you, and knowing this gives us a good starting point.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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tdow
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Re: WELCOME!
« Reply #218 on: Dec 27th, 2006, 10:40am » |
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Thanks. I did, and failed. I get a pressure on my lower neck. This pressure with a dull ache on my left side. The ache starts to move up my neck and into my left ear, then starts to get sharp. It then moves behind my left eyeball, and the stabbing sensation starts. Sometimes it does not get that far and lingers around the orbital bone. Sometimes I get tinea when I experience these headaches. Sometimes it gets real painful bad. Nothing takes the pain away when it gets like this. It woke me up during my sleep a couple of weeks ago. That is why I had went to the ER. The searing pain. I tried every homeo pathic remedy and nothing seems to work.
It has been suggested to use Riddiln, lythium, Oxygen, Immetrix injectable and other things.
Deep breathing has seemed to help in the past, but usually it takes about 15 minutes or longer for this to work. Also my left nostril flares up like I have allergies. This happens when the pain has moved into and behind my eyeball (Optic nerve?).
It seems that I have a lingering sense I am not out of this cycle activity yet, but I feel I am getting close.
I am satisfied with the diagnosis, but I am seeing my GP next week for further evaluations any suggestions when I see him?
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Tom
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nani
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Re: WELCOME!
« Reply #219 on: Dec 27th, 2006, 10:53am » |
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Hi Tdow. Over on the left, click on the Oxygen info link. Print that out and take it to the dr.
Also, print this page:
http://www.ouch-us.org/medications/medications.htm
These should help get you the treatment you need.
pain free wishes, nani
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tdow
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Re: WELCOME!
« Reply #220 on: Jan 3rd, 2007, 10:48am » |
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Nani and Redd,
I went to my primary care doctor yesterday.
He reviewed my cat scan, did a full check up, and went through a similar checklist. He gave a me a sample of Imitrex nasal spray 20mg which I ended up using last night. It completely killed the headache. So far so good.
Thanks so much for your advice. Talk to you later....
Tom
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Tom
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paulc
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Re: WELCOME!
« Reply #221 on: Jan 7th, 2007, 10:26am » |
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Hi I am Paul. I have been a CH suffer for many years but only got diagnosed 2 weeks ago, brill now I can do somthing about it. Like many I stumbled on this ace site when searching for answers about CH.
Previously I have had cocaine sprayed up my nose and my sinuses drilled and 20 months ago on my last encounter with CH I was diagnosed with Neuralgia, prescribed tegratol and nearly died from Stephen Johnsons Syndrome, "greeeeeeeeat" but having seen so many doctors and surgeons over the past 20 or so years funnily enough it took a phone call from accident and emergency to a ward doctor who made this final doagnosis over the phone, again "greeeeeeeat", no more needles in the spine to take spinal fluid, no more crap drugs etc, it may seem silly that you can be in so much pain but feel better for the simple fact that you know what it is you are dealing with.
Thanks to all of you for welcoming all us new members to this site, its great to know that there is someone out there with more knowledge than the flipping doctors. I just need to get my wife to visit this site too, she may understand better and not get too worried when my next attack of the clusters appears.
I am in my 3rd week of the present cycle and I think the worst is over (fingers crossed), but again thanks for the welcome and for keeping a good and friendly site going.
Paul
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Paul C
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pubgirl
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Re: WELCOME!
« Reply #222 on: Jan 7th, 2007, 11:35am » |
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Hello Paul
It sounds like you are on the right road now, after an all too familiar story of misdiagnosis and mistreatment.
Make sure you get the correct treatment this time (the only licensed treatments in the UK are subcutaneous sumatriptan - Imigran injections, and high flow rate 02) so you can insist on these now you have your diagnosis.
Also, we have an OUCH in the UK which is very active and has many hundreds of members (sufferers and their supporters) and a Helpline manned by knowledgeable, trained sufferers.
There is a Support Board at www.clusterheadaches.org.uk from where you can become a member and talk to and even meet other sufferers in the UK. Helpline number is 01646 651 979.
Hope to see you both over there?
Wendy the Brit
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Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
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tdow
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Re: WELCOME!
« Reply #223 on: Jan 22nd, 2007, 10:03am » |
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So 20mg Immetrex Nasal Injector seems to have solved the onset of the attack and has totally killed the attack after about ten to 15 minutes while it is full bore.
The bad news is, my insurance will not fill more than 12 in a 30 day period. I am in the process of getting it waved, and can only pray it gets approval.
Prevent: My MD prescirbed a beta blocker (Inderal) as I was skeptical of the effects of Topamax. It did not work of course, had about a 5 on the kip a couple days after trying it. Is there something else that works better than Topamax? I have spoken to several people who have tried Topamax and said it made them stupid.
I am three months into this cycle and have only had two days repreive.
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| « Last Edit: Jan 22nd, 2007, 10:05am by tdow » |
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Tom
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LeLimey
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Re: WELCOME!
« Reply #224 on: Jan 22nd, 2007, 10:12am » |
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Hello tdow, nice to meet you.
Have you tried verapamil? Its considered as front line defence against CH and is frequently started with a prednisone taper which holds attacks at bay whilst the verap kicks in. It is a blood pressure med so you will need regular ECG's whilst increasing the dose.
Pred tapers are commonly around 80mg for a week then reducing by 5mg every 3-5 days. Your doctor or neuro would obviously decide on a regime for you based on your medical history.
Verap doses vary, some people get relief at as little as 360mg, 480mg is a common dose whilst some again need to go to 960 mg per day in order to get relief. Its completely personal, we all differ and you just have to persevere until you find the dose that works for you.
Verap used in conjunction with Lithium is also an effective treatment combination.
Obviously your doctor knows your history and what options would be best suited to you but these are options which it would be well worth you discussing with him/her.
Let us know how you get on or if you have any further questions, we're always happy to help.
Have you looked into some of our self help options here such as use of ice or heat, coffee or red bull? There is a wealth of information on this site to fight CH so think of it as a treasure trove and wade right in! As I said, we'll help you all we can
Regards
Helen
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