|
||
|
Title: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 3rd, 2006, 8:02am Hi I've been suffering from headaches for as long as I can remember. They are not specific to one side of the head, they can vary from being throbbing to feeling like someone is sticking a knife in the top of my head to being at the side of my head. I'm not kidding I feel like I ALWAYS have a headache. I would love to wake up one morning and think, today I don't have a headache. Been through major paranoia that there is much worse going on in my head of mine. Been to the doctor on so many occasions, were on first name basis. I drive my family mad with always moaning about headaches. I tend not to take too many painkillers as I think they sometimes have an adverse affect. I sometimes feel like I'm going mad as I cannot believe someone can have this many headaches on a continious basis - please save me from madness. |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by AussieBrian on Nov 3rd, 2006, 8:15am Firstly, you're no more mad than I am and you've come to a good place where you can learn heaps. Start by looking at the buttons on the left and there's one called Cluster Quiz. Do that and get straight back to us. With luck you'll fail abysmally but we can help you in many other ways too. |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 3rd, 2006, 8:21am Thanks for the prompt reply. I have completed the Cluster Quiz and it seems that the questions I have answered suggest that I do not suffer from CH. I feel rather fed up that I cannot find the answers to these headaches I experience on a daily basis. :'( |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by AussieBrian on Nov 3rd, 2006, 8:31am Believe it or not, that's fabulous news. Gimme a minute because there's another link there that may help a lot. |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by AussieBrian on Nov 3rd, 2006, 8:38am Here 'tis. http://www.headachecare.com/selfeval.htm I personally suggest not reading the head paragraph but going directly to the questions and then looking at your score. Again, let us know how you get on so perhaps we can point you in certain directions. We're not doctors here, but we're top class patients. |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 3rd, 2006, 8:56am Hey, really appreciate your response. I've looked at so many different sites regarding types of headaches. I've taken the test on the link you provided, looks like mine are similar to tension headaches. Which I suppose makes sense seeing as I'm always worried and tense about something, maybe thats why I always have a headache. Thanks again for your help on this matter, much appreciated |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by BB on Nov 3rd, 2006, 9:24am Hello Headachesgalore, Sorry to hear you have headaches all the time, must be awful. Have you seen a headache specialist and get some tests/scans done yet ? Hope your headaches will stop. Annette |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by chewy on Nov 3rd, 2006, 9:32am We specialize in mad crazed people. Aussiebrian for example. Welcome home. |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 3rd, 2006, 9:35am Hi, I have not seen an actual specialist. I have been to my doctors many times over and he referred my to a private hospital and said I could have a scan but it would cost £450.00. Who else could I see? |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by davyp on Nov 3rd, 2006, 9:51am Hi headachesgalore You need to see a neurologist who specialises in headaches. Where abouts in the UK are you as we may be able to point you to a good headache neuro. So glad you failed the cluster quiz it is the 1 test i would have been happy to fail Dape |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by BB on Nov 3rd, 2006, 9:53am You should see a neurologist who specialises in headaches, he or she will do test and make a concrete diagnosis for you and start you on the right treatment course to help controlling these headaches, also to rule out other nasties. Where about are you? Someone here would be able to recommend a good specialist in your area for you to see. Anette |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by davyp on Nov 3rd, 2006, 9:54am Ive just checked your profile and i see that you are in Blackpool we have person on here from Blackpool (I THINK) and i am sure they will be along at some point . Dape |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by AussieBrian on Nov 3rd, 2006, 9:58am on 11/03/06 at 09:32:10, chewy wrote:
I resemble that remark, Chewy, and full moon has nothing to do with it. He wants a bit of help and he's gunna get it whether he likes it or not, and you've got to be the first to admit I never tried to sell him shares in a really nice bridge. HeadachesG, consider seeing other doctors until you find one who actually knows something about headaches. The scans and MRIs really are important to rule out certain other nasty afflictions but may end up saving you quite a few dollars along the track, along with peace of mind. If this turns out to be the case then let me know because have I got the deal for you! |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 3rd, 2006, 10:03am Thanks to all for your replies. I live in Blackpool (UK). Do I just search for a neurologist? Sorry to sound so thick but I have put up with the headaches for so long now that I think it's made my actual pea brain rather smaller than it was! Any advice would really be appreciated, I'm starting to feel much better knowing that I could seek help from a pro. Feeling much happier |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by BB on Nov 3rd, 2006, 10:09am Helen, Yoohoo ... Calling Helen ... She is our CH expert from UK and she has a magic broom to sweep you off your feet, literally .. She will come soon to help you with details of a good neurologist near where you are , as soon as she learns to navigate that broom a bit better and works out how to go *around* trees instead of straight into them ... Annette |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by davyp on Nov 3rd, 2006, 10:14am What Annette said but also OI YORKY The 1 from Blackpool Dape |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by TonyYZF on Nov 3rd, 2006, 1:54pm Hi Carl, Sorry for the headaches. We can certainly relate. This is a long shot...a very long shot...but My wife suffers from a few somewhat rare conditions. Chiari Malformation, cranial instability and a tethered chord. She has fought daily headaches for 7 years with no diagnosis from neuro's and all sorts of other doctors. We finally found through research about these conditions that tied into her symptoms. She was recently diagnosed at the Arnold Chiari Institute where they specialize in these specific and related conditions. Anyway, if you have some other symptoms that may seem wierd and totally unrelated to your headaches you might want to look at the following website. I am not implying by any means that you may have any of these conditions, but i know the frusteration my wife has gone through with doctors always telling her that they could not find anything wrong. Like I said it is a long shot, but it is amazing how many people have these conditions and suffer undiagnosed because many doctors just don't have the expertise in this area. Good luck. http://www.northshorelij.com/body.cfm?id=6458&oTopID=6458&PLinkI D=6407 Tony 8) |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by chopmyheadoff on Nov 8th, 2006, 6:02am alright mate - im from warrington just up the m6. mate, there is no way your doc should be telling you that you have to pay for a scan, thats obsurd. ok, first thing to do is to DEMAND a referral to a neurologist. there is no way the doctor can refuse because at the end of the day, she cant help you. she has tried. The neurologist will be able to give you a firm diagnosis and send you for all the scans etc that you need to rule out any other nasties. there are plenty of treatments available mate, you dont have to suffer, but the most important thing is to get a firm diagnosis so you get the right treatment. If you have trouble , get your doctor to contact dr Silver at warrington hospital. He is a neurologist and a cluster headache specialist. he will see you within a week if it is cluster headache related. if u need any help give us a shout. ps are the lights still on up in blacky ?? |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by headachesgalore on Nov 8th, 2006, 6:13am Thanks for your reply. I'm off to see the doctor today and I'm not leaving until I feel satisfied with some answers. The lights are still twinkleling in wet Blackpool! I live here and I've not even driven through them yet, how bad is that!!! |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by LeLimey on Nov 8th, 2006, 6:49am Hiya, Make sure when you see your doc that you ask for a referral to a neuro specialising in headaches. You do not want to see an MS neuro and doctors tend to be a bit slap happy sometimes about slinging you on any old waiting list! As Chop says, Dr Silver at Warrington is HIGHLY recommended, he is a very well respected doctor and if there isn't a HA specialist at your local hospital ask to be referred to him. Keep a headache diary. How long they last, symptoms, pain and possible triggers that may have set it off. Don't be fobbed off, if you are come back here and we'll help more and DO let us know how you get on regardless okay?! Can you describe your ha's and list any meds you've tried too so we can see if we can help? Helen |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by ferrie on Nov 8th, 2006, 7:33am Hi, add me to the confused and needing help category! I paid over £1000 to see a specialist privately for my headaches and although they didn' t tick all the symptom boxes, he said they were CH and sent me away with a prescription for 3 tablets that didn't work. In the years since then I have had hospital strength painkillers that have set me off my head (I also have M.E./CFIDS) So now I am trying to cope with the headaches with OTC medicines that don't help. At this moment of typing, I am as low as I can get and don't know what to do next. If I could drink alcohol, I would surely have drunk myself into oblivion by now! |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by LeLimey on Nov 8th, 2006, 7:39am Hi Ferrie, lets see what we can do to get you sorted! I'm sure we can help. First off, what meds did the specialist give you? Did he do an MRI? What other meds have you tried over the years? Can you describe your attacks, what they feel like how long they last, how often they come? There is alot we can do and suggest and the very least I can do right now, this minute is tell you that you're not alone any more. You have all of us and we'll help you all we can :) That's a promise! Helen |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by ferrie on Nov 8th, 2006, 8:10am Hi Helen. The headaches ALWAYS come in September and last for maybe 8 - 10 weeks non-stop. I cant remember what the consultant gave me but it was only a one-off 3 tablet treatment. Last year I was given PIZOTIFEN to prevent attacks but it didn't work. Since then I have been trying to cope with strong painkillers OTC but they don't help the headache, only flare up my stomach and make me sick. I have an appointment with the doctor on Friday but I think she is fed up looking at me as I see her quite often with stuff related to my M.E. I am so glad that I can talk to someone here who understands. My family and friends are fed up looking at me wrecked with this and I just want to hide away until its over. When people say to me on a daily basis "do you still have THAT headache"... it drives me crazy...I don't want to have it anymore than they want to hear me say I have it....do you know where I am coming from? :( |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by chopmyheadoff on Nov 8th, 2006, 9:07am ferrie - welcome to the club mate - most of us here have had aweful trouble getting people to listen and understand. to them its just a headache !! have a look for the "letter to collegues" thread, it has a link to a letter to give anyone that metters , explaining what you are going through. from the little you have told us it certainly sounds like clusters, and if that is the case there ARE meds out there that can kill an attack in seconds. but these ARE NOT painkillers, rather meds that stop the CAUSE of the pain, rather than dulling the pain its self. chin up - get reading so your armed to the teeth with info and you can tell your doc a thing or two |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by LeLimey on Nov 8th, 2006, 9:11am Pizotifen went out with the ark Julie, its a very old treatment and not effective for the vast majority. OUCH UK has a GP Info website I would suggest you read and also share with your doctor. It was written largely by Professor Goadsby and his registrar at the time, Manjit Matharu. PG is probably one of the most eminent experts on CH in the world and he is also the one who wrote ALL the info in your doctors BNF (British National Formulary) so your doctor can check up on his validity if he feels the need. The site is http://gpinfo.ouchuk.org/ Another link you'll find very useful is this one. http://www.ouch-us.org/chgeneral/colleagueletter.htm Either get friends and family to read it online or print it out for them. It should help them understand (failing that I'm a dab hand with a hammer.. I'll come and help you!) Painkillers won't help you with cluster headaches. They work in the wrong way. In a hit, the blood vessels on the affected side of your head swell by up to 20 x their normal size which is why they hurt so much. What we need are things that will constrict them as quickly as possible to take the pain away. Painkillers don't do this, we need Triptan drugs such as Imigran injections The tablets and nasal sprays simply do not work fast enough for Cluster Headaches. your doctor may try to fob you off as these are horrendously expensive but tough on him, its all that is actually licensed for CH in his BNF so he CANNOT deny them to you. They are actually an auto injector and are only subcutaneous. You just push the pen against your thigh and push the button and count to ten, its easier than it sounds! Oxygen with a non rebreather mask at 15LPM is also extremely effective, in fact it's my weapon of choice. OTC remedies that will help you are Strong coffee (caffeine is a vaso constrictor) and Red Bull or the cheaper equivalents like Asda's own or Tesco or where ever. They have a high caffeine content and also Taurine which enhances the effect of the caffeine. I hope this helps, ask all you like, we will do all we can to help you as I said and don't worry about "daft" questions.. the only daft question is the one you want to ask and don't. Helen :) |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by ferrie on Nov 8th, 2006, 12:20pm Hi CMHO and thanks for the welcome. Helen thank you for all the info, I have been reading the forum all day and now understand a bit more about CH. I realise now that all the crap painkillers were doing me no good at all. I will have to try to get this information across to my Doctor on Friday but I am afraid she wont listen and I will be back to square one. After reading through all the posts on this forum, I can relate to so much. One thing I havent noticed much was the mention of eye pain. The pain in my eye is as bad as my head. Every bout I have, I go to the optician when I start my cluster as I am convinced I have somthing seriously wrong, and he says my eyesight is fine. It hurts like crazy. Julie |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by LeLimey on Nov 8th, 2006, 4:18pm Ferrie get her to look in her BNF, its all there under Cluster Headaches! Also, if she is worth her salt get her to look at the OUCH UK site, its a registered UK Charity, its not "just another web site" She will get a lot of information on what you need from there. Stand firm, you have a right to the proper meds for your condition. These aren't experimental, she HAS to prescribe them for you. You also have the right to see a Headache Specialist Neuro, now I've seen you're in Aberdeen so this may mean a trip and I don't know if you are working or not but there is help available for people who need help for travel with medical conditions. Your local hospital should have more info on this for you. Let us know how you get on. If you need help, you'll get it, don't worry.. we're in your corner now. Its your doctors turn to worry! LOL Helen |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by Tata on Nov 9th, 2006, 7:41am on 11/08/06 at 12:20:09, ferrie wrote:
Hi Julie- I just wanted to welcome you and let you know I have severe eye pain, too. Back before I was diagnosed, my Dr had me checked for glaucoma because I told her how bad the pain in my eye was and she could see for herself how bloodshot and swollen it was. Unfortunately, it sounds like your eye pain is as bad as mine :(. On the other hand, the good news is that you found this place and you can already see how wonderfully helpful everyone is. One thing I would stress is the oxygen treatment. Try to get your Dr to prescribe some or let you use some during a hit. If CH is what you have, you won't believe how fast it works--the first time I tried it and it took the HA away in under ten minutes, I cried like a baby. Good luck with all the Dr stuff--it's not fun having to deal with all of that on top of pain. Take care and let us know how you're coming along. Tata |
||
|
Title: Re: New, Confused, need help and re-assurance PLS! Post by ferrie on Nov 9th, 2006, 3:17pm Helen, I am not in Aberdeen, I am in North Lanarkshire, just outside of Glasgow. I have been to see a specialist (privately), he gave me something called Maxalt Melt and my doctor wasnt going to give it me!!! However she did, but it made no difference. I am going to give her the website address for OUCH and ask her about the Oxygen etc. I will let you know how I get pn after I see her tomorrow.......Thanks for being there. Tata, thanks for the welcome and telling me abput the eye pain. As I sit here, I can hardly see the screen with my eye shutting with the pain. |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |