Please help-i cant cope anymore :(

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DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/3/2012 10:19 AM (GMT -6)   
Hello, please offer some advice. The pain in awful and stoppin me enjoying life so much so i dont think i want to be here anymore. I ruining my husbands life :( here is a brief history:

Since i was about 19yrs old every few months ive had about 3-6 consequtive days of really really bad headaches (maybe 2-4 Times a year) always in the front of my forehead (between the eyebrow area) always like a pressure/intense feeling with slight nausea. They always started normally in the afternoon, i would  take 1 imigran and within 2hrs feel 100% fine again until the next day when it would start again in the afternoon again (occassionally it would be evening/morning) then i would take another imigran, which would once again stop it until the next day. this would go on for 3-6 days and then just stop! Some days i would take co-codamol or other painkillers if it was being particularly stubborn but it would always stop after about day 6. Until a few months later when it would start again. I was able to work most of the time as the imigran worked quick.

I once went to a private doctor, i think i was about 19/20 and he said they were 'chronic daily tension headache'. I cant remember whether it was him who prescribed imigran or what the outcome was but i remember doing food/drink/weather diaries to see if there was a trigger, but there wasnt.

Ive never worried over the years because ive always known they start, but in a few days will stop. Ive had them all my adult life and it had become a part of my life. My headache 'episodes' i always called them.

On the 15th august 2012 normal pattern of headaches/migraines started (starting around 1pm-4pm) So i started taking 1 imigran daily which took the pain away. After the 6th day i thought it was strange they hadnt stopped but carried on with the imigran. 
On about the 8th day i felt imigran was becoming less effective so over the following days i tried other things like aspirin, ibroprofen etc......went to the doctors who prescribed a different triptan and also a large 900 dose of dissolving aspirin. I tried these but the pain kept coming back.

Went to a&e on 29th who did CT scan which showed nothing wrong.

I had taken a triptan everyday for 15 days prior to the 30th and In those 15 days i had taken maybe 8 co-codamol (4 times x2). 3 aspirin (in 1 dose), approx 3 ibroprofen, 1 diclofenac,  3 naproxen. Also took 1 dose of amtitriptyline and 3 doses of propanalol in those 15 days.


30th August was last time i took ANY painkillers-I was told I could be getting re-bound/overuse headaches. So im now suffering and crying daily and feeling like i want to end my life! I cant work, could lose my job and just want them to STOP!!! 

On the 1st september i started 25mg of topomax (1 tablet in a morning) prescribed by my GP who phoned the on-call neurologist. 

As of 3rd september still getting awful daily headaches!!! Ive not taking painkillers but cant carry on like this! 
The topamax makes me feel sick and weak until evening time when i feel better but thats always when my headaches are worse (they start afternoon time most days but today ive had it ALL day really severely). Went to the doctors AGAIN today who told me to up my topamax dose to 2 from tomorrow (25mg morning & 25mg evening) and from the weekend start on citalopram to help with my anxiety (im upset because im worried they wont stop and dont like being left alone) without my husbane i would have killed myself by now. Please help.

Post Edited (DanielleC) : 9/3/2012 10:27:09 AM (GMT-6)


korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/3/2012 10:43 AM (GMT -6)   
Hi Danielle,

I'm sorry that you're suffering so much right now. Unfortunately the doctors were right--taking pain relievers or abortive headache medications more than a couple of times a week often is a quick path to rebound headaches. In fact, there's a chance that your headaches persisted for so long because you took the Imigran (commonly known as Imitrex in the US) so frequently.

Speaking as someone who has gone through rebound headaches many times since my headache started and who has also been on Topamax on two separate occasions, the best advice I can give you is to try to be patient. Or, if that's too hard (and I know it can be), at least acknowledge that you'll probably be feeling better soon. Rebound headaches can be very nasty while you're taking too much medication but they also tend to persist a while after you stop. To be feeling absolutely rotten 4 days after stopping overused medications is totally normal. Though I realize that's unlikely to make you feel any better, I hope you'll worry a bit less. And even aside from the rebound phenomenon, stopping the medications that were making you feel better is a big shock on your system and you'll take a little while to normalize and redevelop non-medication coping mechanisms.

Regarding the Topamax, it typically takes several weeks at least to reach its full benefit. Many people struggle with the side effects but they do get better with time and the medication is very helpful to a lot of people. I know that you feel like things couldn't be worse right now but I sincerely hope and believe that you'll soon be looking forward feeling significantly better.

Warm regards,

Ben
DX: NDPH (2003-present), CRPS (1998-?) Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Oxycodone

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/3/2012 11:08 AM (GMT -6)   
Thank you Ben, apart from my doctor and husband who gets frustrated your the first person ive spoke to. I gave a big sigh of relief when i refreshed my page and saw someone had responded. I guess i cant understand how ive always used imigran before for over 10yrs for approx 6 days and the daily headaches have stopped just as quick as they started? But this time they carried on? I think thats why im not convinced its rebound? Im terrified they wont stop. Im also reading topamx is for migraine and mine feels more like intense tension in my forehead. The only relief i get is digging my knuckle into my head and rubbing really hard with it! So im scared im on the wrong medication! Iv got no tension in my neck or anything as ive har it checked.
Ive cried off and on all day! I cant wait to start the citalopram and hopefully feel more positive and get rid of these suicidle thoughts! The only reason the doctor told me to wait until the weekend is because she said when i up my dose of topamax tomorrow it might make me feel more sick and also citalopram can make people feel sick so i wont know which is causing it.
I just want this pain to go! If it was anywhere else i could cope! :( thank you again ben

Post Edited (DanielleC) : 9/3/2012 12:03:47 PM (GMT-6)


DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/3/2012 3:00 PM (GMT -6)   
Can anyone offer advice? Thank you

korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/3/2012 5:01 PM (GMT -6)   
Hi again Danielle,

I actually suffer from chronic (well, persistent actually) head pain more than I experience migraines. For example I have my headache 24/7, non-stop, but I only have migraines a few times a week. However, the first time I tried Topamax, at least, I found that it helped decrease my head pain a good bit. The side effects were tough, so I ended up moving to Zonegran at the time, which is also an anticonvulsant medication.

To grossly simplify how these medications work, they both regulate levels of neurotransmitters in your brain that play a major role in the headache cycle for migraines, other types of headaches, and just neuropathic pain. Specifically Topamax works with the GABA/Glutamate neurotransmitter system increasing the activity of the inhibitatory chemical GABA and block the activity of the excitatory chemical, Glutamate.

You'll read that Topamax is for migraines because it was one of the first medications to be FDA approved to treat them in the US. However, as you're seeing, it's prescribed for many similar ailments. It is considered one of the most effective preventative medications for chronic headache sufferers. So try not to worry, you are on the right path.

Ben
DX: NDPH (2003-present), CRPS (1998-?) Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Oxycodone

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/3/2012 5:25 PM (GMT -6)   
Thank you very much, that puts my mind at rest, im terrified of going up to 50mg tomorrow. But hope i will be ok. Thanks so much for helping me. Your a star! I know your not a fortune teller but do you think my headaches will just randomly stop again like they always have done or will i always have them everyday now? :/

Post Edited (DanielleC) : 9/3/2012 5:29:16 PM (GMT-6)


korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/3/2012 8:11 PM (GMT -6)   
Well, at the very least your goal in treatment will be getting the headaches under control so that, even if they do continue, you'll be able to live a happy and mostly normal life. I hope that Topamax helps you reach that goal. Even if it doesn't, though, there are still a lot of very good options out there.

Take care,

Ben
DX: NDPH (2003-present), CRPS (1998-?) Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Oxycodone

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/4/2012 4:59 AM (GMT -6)   
Im have to take 2 from tonight and im terrified. I have to go back to work in the morning as this is my last chance they will give me before giving me my p45! Im in a new job in a 6mth probation. Ive been laid all morning feeling ill and crying. Will taking a night time 25mg as well as the morning one make me feel worse? :(

korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/4/2012 6:21 AM (GMT -6)   
Danielle,

I hope not, but it's hard to say. Among the many people I've known who've taken Topamax, there can be a large range in what dose is tolerated. Generally speaking though, the low range tends to kick in around at least 100mg daily. The side effects might become a little more pronounced but I think you'll be able to handle it.

I know it's very hard but it'd probably be a great help to your ability to cope if you could lower your stress level. For instance, there really is no reason to feel terrified about going up on the Topamax. It might end up making you feel a little "off" because of the side effects but it's rather unlikely that you won't be able to cope with these changes, especially with your history of headaches.

I know it's unsettling (to say the least) when you don't have the medications that have helped in the past to fall back on, but there are still plenty of things you can do to cope. For example, try to have a relaxing day before work. Make sure you stay hydrated and eat well. If there's anything that particularly brings you pleasure (or relaxation, as I mentioned), focus on that for at least a little while. And, perhaps most of all, realize that you have the strength to get through the day, even if it is a hard one.

Best wishes,

Ben
DX: NDPH (2003-present), CRPS (1998-?) Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Oxycodone

I'm a patient at the Thomas Jefferson University Hospital Headache Center in Philadelphia, PA.

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/4/2012 9:08 AM (GMT -6)   
Ben thank you so much. I have had 2 miscarriages this year and had just recovered emotionally from them without medication. I think this has tipped me over the edge and i now definately know i need antidepressants. I dont however feel like citalopram are th right ones as they are known for causing headaches. Prozac was briefly mentioned by another doctor so i migh mention that instead at my next appointment on friday.
As for these headaches they are killing me! Ive just phoned the headache clinic and the referal is 16weeks!!!!! Its disgusting!

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/4/2012 1:07 PM (GMT -6)   
Is it normal to have pain from the moment i wake up until i go to
Sleep? Its unbearable. I broke down and took 2x
8/500 co-codamol today and it didnt touch it! Surely its barbaric
To leave people with pain 24/7
:,(
Im losing the will to live!! I could deal with a migraine a few times a week but constant is enough to make anyone want to finish it all.

Im sorry to go on. Your all i know eho responds :(

Elpis
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 9/4/2012 2:25 PM (GMT -6)   
Danielle, please know that you are not alone, there are many here who care about you. Stay strong, know that you can do it, things will get better. I don't suffer with the horrible conditions that those on this migraine forum do, but my daughter does and has for years, so I experience pain of a different kind. I have watched in awe at the strength that she and others on this forum display and have faith that you all will see better days. Listen to Korbnep (Ben), he has been through a lot and is very kind and knowledgable. Hang in there, you will get this under control!

lab01343
New Member


Date Joined Aug 2012
Total Posts : 18
   Posted 9/4/2012 4:00 PM (GMT -6)   
Danielle, you really are not alone. I have been with chronic migraines that are mostly daily for about 7-8 years. I can understand how hard it is to be patient to allow the medication to work. You can't let the pain "win". We are strong. Most of us at some point have had the same feelings that you are working through at the moment. Although each of us have found slightly different things to help, I know that finding this forum was a life safer from me.
On my bad days I will try the following and it usually helps:
- warm bath with little bit of mint foam or salts
- Placing a ice pack on my head when I get out for about 15 minutes
- gravol to settle the stomach
- An icy/hot muscle gel (after the ice pack) across the forehead, temples and back of the neck
- ear plugs, mask and laying down in a cool room.
If I get lucky I fall to sleep.

I try to keep some icy/hot muscle gel in my desk and will apply a little if the head pain starts during the work day.

Stay strong. You can control the head pain.

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/5/2012 10:20 AM (GMT -6)   
Thank you for th replies, i went back to work this morning. Work have let me do half days for 1 month. I really struggled. My husband dropped me off and i cried like a child on the first day of school, i was so wobbly and weak from the topamax. does anyone know if it should be helping take the headaches off by now? This is the 5th day, im now on 50mg a day and for th first 3hrs of taken a tablet i feel weak, wobbly, uncoordinated, dizzy and sick! Then have diahhreah on and off all day with stomach and wind pains (sorry too much info). But the headaches are the same! :,(

korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/5/2012 8:10 PM (GMT -6)   
Unfortunately the side effects kick in very soon but the drug effectiveness usually takes a few weeks. I know that's a long time to wait. Dealing with illness and treatment all of these years really makes everything seem like a waiting game to be honest. But it gets better. Even with has been a remarkable lack of progress in my own treatment, I sincerely assure you that it gets better.

Medications can help, hopefully a lot, but as much of that help has to come from ourselves. And I can tell that you're coping better already Danielle. Having a support system (or at least the start of it), making accommodations so you can keep going with your life, even just not giving up. You'll get through this.

Ben
DX: NDPH (2003-present), CRPS (1998-?) Abdominal Migraine (2010-present)
RX: Lamictal, Indomethacin, Propranolol, Provigil, Viibyrd, Oxycontin, Clonazepam, Zyprexa, Melatonin, Magnesium, Boswellia Serrata extract (Boswellic acid)

CPAP for mild sleep apnea
PRN: Oxycodone

I'm a patient at the Thomas Jefferson University Hospital Headache Center in Philadelphia, PA.

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/6/2012 1:19 AM (GMT -6)   
Thank you once again. The tablets at night are stoppin me sleeping! I had 4hrs sleep last night :( i take it when i go to bed. Should i be taking it with my evening meal instead? Thank you

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 909
   Posted 9/6/2012 1:37 PM (GMT -6)   
Danielle, I was told to take Topamax with meals (I take mine with breakfast and dinner). Hopefully within the first two weeks you'll see it having some impact on your headaches. It's not a miracle "cure," but it brings down the intensity of the pain for most people who take it. I've been on it for 5-6 weeks now and while I still experience some degree of daily headaches, I'd say that in general they went from a 7-8 out of 10 (on a 1-10 scale) down to a 2-4 most days. It's also decreased the frequency of migraines I get from 2-3/week to maybe 4 in the last six weeks (although one did last seven days). If it continues to impact your sleep after a few days, you should call your neurologist and ask about it.

Dealing with chronic pain is a daily challenge and I would not wish it on anyone. People who do not have to deal with daily pain cannot understand how it affects even the smallest aspects of our lives.

I also have Crohn's Disease and in that community we've circulated this piece around multiple times over the years: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. A woman with Lupus came up with the idea of Spoon Theory to help describe chronic illnesses and what they "cost" those dealing with them. I think it makes a lot of sense describing how hard little things like just getting out of bed in the morning can be when you're sick.

The important thing (which many other people have noted) is that you are not alone. It may seem like that a lot of the time, but there are communities fo people like this one who are here to offer support and advice.

I wish you luck and I hope you start to feel better soon.
Crohn's ileocolitis dx 2/2006. Inflammatory arthritis. Chronic daily headaches + migraines. Currently taking 2g Pentasa, Flagyl, 100mg Trazadone, 1mg Klonopin, 100mg topamax, Maxalt and Sumavel for migraines (as needed), Lorzone for pain (as needed)

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/6/2012 3:06 PM (GMT -6)   
Thank you for the reply. I cried all day on and off and constantly have suicidle thoughts. To those who suffer pain like this and life with it you must think i need a slap but in all honesty im a weak emotional person anyway and have had the worst year ever, ive just recovered another illness and was just starting to enjoy the simple things like th cinema, meals out and shopping. Now im too ill to plan anything. So i cant see the point to life at the moment! I cant understand why these headaches have just starter out of nowhere for this long. If i cant enjoy basic things then neither can my husband because if i have to stay in the house then he will stay in as well and thats no life!! I just dont want this anymore :,( its not fair on my husband and im not emotionally strong enough to have a life in 4 walls! Im back at my doctors tomorrow and i will explain 1 last time and see if they listen. Im so sorry if i seem pathetic. But ive gone through so much with everything.

Elpis
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 9/6/2012 4:36 PM (GMT -6)   
Danielle, hang in there and good luck at the doctors tomorrow. Be sure to tell him/her about your emotional state as well as your pain. I know that where my daughter goes, they have a psychiatrist and psychologists that help with the emotional aspects of what the patients are dealing with because they do realise that it is tough. Perhaps they have that support where you go too or can lead you to someone who does. Stay strong and keep us updated on how it goes!

lab01343
New Member


Date Joined Aug 2012
Total Posts : 18
   Posted 9/6/2012 8:14 PM (GMT -6)   
I recently spent sometime off work just because life got to be too much. There is not only my illness but both my sister and mother are in bad shape. It has been a rough few years and I also have a very stressful job. I ended up not even being able to talk to anyone because I was crying so much and was a complete basket case. As you can imagine this irritated my migraines. I also suffer from insomnia, again not a good combination for the migraines.
My doctor has given me cipralex to help calm my emotions. I was also directed to this website https://moodgym.anu.edu.au. It is a series of exercises to help manage your emotions and let's you know that it is ok to be at your limit, take care of yourself and be just that little bit selfish that most of us won't allow. I truly believed when I first logged on that it would be a waste of time. I cried my way through the whole first module as it kept identifying my thought patterns and letting me know that we all can be tough on ourselves, but we don't have to be.
My doctor also had to give me sleeping pills as I was going days on end without a minute of sleep. I have to admit that it was getting a little scary.
I know it's hard. Take a deep breathe, tell yourself that you do come first, and talk things over with your doctor. Patients is so hard when you are in so much pain, but eventually you will find something that helps you manage it and you will feel better.

meshell67
New Member


Date Joined Jul 2012
Total Posts : 7
   Posted 9/10/2012 6:57 PM (GMT -6)   
Hello Danielle, I am offering you my book to read for free, it will help you. I was a chronic migraine sufferer and I suffered far too long, many years and I do understand. My email address is on this website under my name I believe, email me so I can send you my book. My book covers what I did to turn my life around. At one time in my life I was at the stage of averaging around 26 migraines a month and they were very bad ones, that I ended up taking sleeping pills for. Imigrain no longer worked. Please DO NOT TAKE SLEEPING PILLS THEY MAKE THEM WORSE. SO MUCH WORSE.... Not at first, but in the long run, and the pills are very addictive. I was only existing for many years, however I have gained my life back :). Hope to hear from you.... Michelle

Post Edited (meshell67) : 9/10/2012 7:07:33 PM (GMT-6)


Jtoz54
Regular Member


Date Joined Mar 2012
Total Posts : 30
   Posted 9/11/2012 7:07 AM (GMT -6)   
Hi I suffered from headaches and dizziness all my life. 5 years ago I discovered that I was Salicylate Intolerant, allergic to aspirin and all foods containing salicylates. Aspirin is a salicylate that comes form the bark of the willow tree. All plants produce salicylates as a natural insecticide. It is in things likes fruit,most vegetables, tomato sauce, olive oil and many more. Theres a good list of foods in the book,"Salicylate Intolerance and The Healthier I Ate the Sicker I Got."

Right before I hit bottom I had such a pain in my right eye that I went for a CAT scan to rule out a tumor. Once I went on a low sal diet I got rid of my headaches,sizziness, nausea, neck pain, arthritis, asthma, dry eyes, nosebleeds, swollen glands and a foggy headed feeling.
Check out sickfromsalicylates.com
No one should just accept a diagnosis of Migraine Headaches or Fibromyalgia when they can prevent them by finding out whats causing them. Its usually a food intolerance. Unfortunately there is no test for Salicylate Intolerance because it isnt an allergy. You have to go off the foods that are high and very high in sals and see how you feel. Good luck, Joan

tiltv4
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/11/2012 12:09 PM (GMT -6)   
Danielle, I hope everything is going better for you. I completely understand your feelings and issues with Topomax. I was on it for several years until the side effects became too much, even though it was somewhat helpful for my headaches. However, I just wanted to let you know there is a sister medication of Topomax, called noritriptyline that my headache specialist says is more easily tolerated. I'm hoping your finding some help and getting relief. Some of the medications used for treating headaches can cause suicidal thoughts and nasty depression in some patients, so please don't be too hard on yourself right now. We are all rooting for you!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 328
   Posted 9/11/2012 9:18 PM (GMT -6)   
tiltv4 said...
I just wanted to let you know there is a sister medication of Topomax, called noritriptyline that my headache specialist says is more easily tolerated.


I hate to make a post just for a correction but nortriptyline is a tricyclic antidepressant, while Topamax is an anticonvulsant. They both are often prescribed for the prevention of headaches but they are much different medications. In terms of similar-but-sometimes-better-tolerated medications Zonegran (Zonisamide) is one medication that fits the bill.

This isn't a statement about the efficacy or anything else about the two medications other than to say that Topamax and Nortriptyline are very different medications that work differently and have much different side effects.

Ben

tiltv4
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/24/2012 11:16 AM (GMT -6)   
Your right Ben, sorry for that.  I mean to say zonisimide and typed the other instead.  Thanks for setting it straight.
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