so sad most of the time

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so sad most of the time

Post  gayle on Wed Mar 31, 2010 2:35 pm

two things, the only relief I get for my migranes really is a shot of demorol toradol and phenegan. Its about every other week that I get them. I feel like their are many days that I need the shot but afraid I i will be told that its too soon for another. so instead I suffer and take today. I have taken imitrex, tylenol pm, firenol, and aniti nausuea meds.
I am still in pain and keep having panic attacks cause it hurts so bad. I feel quilty when I get a shot and become afraid that the next time I will be told I cant get one.
last week I had a headach upon waking so bad I couldnt walk on my own. throwing up and diareara. my husband got me to the clinic for a shot and I guess while laying down after the shot I Said to the nurse I would rather be dead than have this pain.

Later in the week my husband said I am beginning to wonder if you need to go to " acadia hosp" that is a detox or mental facility for unstable people.
I was so hurt that he felt I needed that.. I wish I could have put it in words better that I was really just exspressing my need for help with the pain.

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Re: so sad most of the time

Post  HeelerLady on Wed Mar 31, 2010 2:48 pm

Gayle,

So sorry you're hurting. I know what it's like to be in that panicky place because it hurts so bad. I know that depression comes along with the pain too and you have to do what you can to combat it.

I don't know anything about your situation but it sounds like you need to have a serious talk with your doctor. Explain that your medications aren't helping and that the ONLY thing that brings relief is the injections. If they are unwilling to do anything - find another doctor. There is no reason you should be living with that much pain. And never feel guilty that you need to go in - there is nothing to feel guilty about. You are in serious pain, it's not your fault and you need help.

As for the hubby, part of me wants to whack him upside the head. It's not that you have changed (or become unstable), it's what the intense pain has done. I've entertained some bizarre thoughts in the midst of a rager and don't tell anyone cause they would think I've gone off my rocker.

I hope you are able to get some relief soon.

Becky flower
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Re: so sad most of the time

Post  02R96 on Wed Mar 31, 2010 8:05 pm

Hi Gayle and welcome to the site. You won't find a better bunch of people who will help you through the tough ones.

I know exactly what your talking about . I've had to have my wife take me to the ER on several occasions for "thumpers". Your husband doesn't understand how powerful pain can be. Why do you think torture is used to break people?

We don't know enough about your situation and we certainly cannot dispense medical advice, but I agree with Becky that you need to talk to your doctor or find one who specializes in Migraines and/or Chronic Pain and is sympathetic to your situation. Don't walk RUN!!! bounce

You sound like you are in a very bad place physically and mentally and what you are doing now is not working. Please, find that doctor!

If you need to vent someone is always here!
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Re: so sad most of the time

Post  Richard on Wed Mar 31, 2010 10:08 pm

You need to add some experts to your healthcare team:

1. Pain Management Specialist: Pain management is a specialty of medicine now in the USA. Like neurology or GYN, a doctor has to pass certain education and experience qualifications before they are Board Certified in Pain Management. Seek them out online.

2. Neurologist with EXPERIENCE in Treating Migraine Patients ... especially SERIOUS migraine patients like you. ASK, before you even scedule and appointment, what percentage of their practice concerns migraine treatment. Never settle for less than 25% or so. You NEED someone who has experience and knowledge. Demand it of yourself.

My neirologist in San Francisco is also Board Certified in Pain Management. NEVER settle for less. I travel 6 hours round trip AND have to find a driver each month to see this doctor ... but it is worth it! Yes, I still have VERY bad days and bad episodes at some point each day BUT I now have good time regularly too.

Get yourself these doctors and get them soon! "Doc" Richard says so! LOL
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Re: so sad most of the time

Post  LG on Wed Mar 31, 2010 10:16 pm

Richard wrote:You need to add some experts to your healthcare team:

1. Pain Management Specialist: Pain management is a specialty of medicine now in the USA. Like neurology or GYN, a doctor has to pass certain education and experience qualifications before they are Board Certified in Pain Management. Seek them out online.

2. Neurologist with EXPERIENCE in Treating Migraine Patients ... especially SERIOUS migraine patients like you. ASK, before you even scedule and appointment, what percentage of their practice concerns migraine treatment. Never settle for less than 25% or so. You NEED someone who has experience and knowledge. Demand it of yourself.

My neirologist in San Francisco is also Board Certified in Pain Management. NEVER settle for less. I travel 6 hours round trip AND have to find a driver each month to see this doctor ... but it is worth it! Yes, I still have VERY bad days and bad episodes at some point each day BUT I now have good time regularly too.

Get yourself these doctors and get them soon! "Doc" Richard says so! LOL

Making changes like this will save your sanity and your life. Find good doctors. Don't give up, it is such a tiring process. Sometimes you might have to give a doctor a good few visits before you know he/she is the one for you but if you get a bad feeling...RUN! If you do find the right one though, it really will change your quality of life. Very Happy

I hope you feel better very very soon, please don't let anyone get you down. It is nice to come here and have a group that understands. I find a lot of my close family members and friends don't but on the other hand I do find great comfort from all my friends here at Ronda's. Welcome to the forums.
LG
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Re: so sad most of the time

Post  Cindy*W on Thu Apr 01, 2010 2:35 am

Just wanted to say I am sorry you are in so much pain.

I totally agree with what all the other posters have said here.

Basically I get the same injection that you do, but only 1-2 times per month.

Usually only once per month but there are exceptions.

I have good pain meds at home though and that makes all the difference.

Please see someone as soon as you can.

Take care.

Cindy
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Re: so sad most of the time

Post  theresae on Thu Apr 01, 2010 6:37 am

Ditto, to all the above, sorry to hear you have reach a really low point, keep posting and visiting this forum we have lots to offer.
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Re: so sad most of the time

Post  Paradox on Thu Apr 01, 2010 7:09 am

Gayle,

Please take Richards advise. I did. I found a neuro who was also certified in pain management. I also have a six hour round trip drive, one a month. But it is so worth it. I just wrote a note to my neuro and his staff, thanking him for giving me my life back.

I'm now on daily opioids and it's made all the difference in the world. Last week was the first time in over four months that I not only made it through a full work day, I made it through a full work week. I drove 2 hours this weekend to particpate in a Trivia Contest with my son. I had fun! Whoa, what's that!?

We haven't given up trying to find a preventative, but his focus right now is pain management. And what a relief it is.

As for hubby? I agree with the the "slap him up side the head" school of thought.
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Re: so sad most of the time

Post  pen on Thu Apr 01, 2010 7:13 am

Anyone in the UK know if we have Pain management specialists please?

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Re: so sad most of the time

Post  estre004 on Thu Apr 01, 2010 7:56 am

I just wanted to add that panic attacks are common in people who get migraines also. The thought of becoming disabled, even though temporarily, would put anyone in a panic mode.

You also aren't alone as far as your husband not understanding. I don't think anyone that has not experienced this can have a clue as to what it is like. I had a very good letter bookmarked written to explain the pain that we endure to give to non-understanding people. I am unable to find it. Does anyone else have this?

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Re: so sad most of the time

Post  moominamy on Thu Apr 01, 2010 9:12 am

I hope the forum can provide you with some support. I know it's helped me in the past when I felt too low to post much but just reading that I wasn't alone in this was strangely uplifting. Migraine can be a very lonely disease when no-one around you gets it.

Hugs

Amy

Pen - we do have some pain management specialists, you'd need a GP referral. I managed to see one last year. He was all very emminent (an expert witness at the Shipman trial even), but he didn't have anything to offer that I hadn't already tried and wasn't going to prescribe opiates for migraine. I think it would be pretty rare to find someone who did in the uk. I also saw him again in a joint clinic with your neuro. They were both very nice about it but were out of ideas for me. That's when I got a referral to a chronic pain specialist psychologist, who has been helpful in some ways to get me thinking about my life in different ways and vent a bit when I need it.

Worth asking about especially with your fibro too. Plus it's a fresh pair of eyes and new opinions. Go for it!

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Re: so sad most of the time

Post  LizzieB on Thu Apr 01, 2010 9:15 am

I'm so sorry you're having such a bad time. I agree with all the above and hope you can get the right help soon. Perhaps your husband could read some of the threads on here to see how migraines can mess up our minds as well as our bodies. I wish you lots of luck.

Liz
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Re: so sad most of the time

Post  theresae on Thu Apr 01, 2010 9:43 am

pen wrote:Anyone in the UK know if we have Pain management specialists please?

no pen i dont, but i think there is stuff out there,

my friend recently went to gp to get some more diclofenic for her back in case it plays up when she is on her hols, she came back with 75mg of the stuff, able to take twice daily, i have been struggling with 50mg doses, didnt question it at the time, thought the gp could see how rough with migraines i was, and had given me the strongest dose allowed, but no it seems not, which has got me thinking that actually there is probably quite alot of pain relief i could try yet!
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Re: so sad most of the time

Post  Richard on Thu Apr 01, 2010 12:14 pm

Re: Panic attacks and general anxiety over migraine episodes coming on and disabling one.

The solution to the anxiety attacks and the panic attacks in MY life was rather simple yet profound. I simply had to accept that I WAS a migrainer, that I WAS going to have disabling migraine episodes (daily), and that I had a simple choice:

A. Fear the onset of migraine episodes causing panic attacks and high general anxiety in my life ... leading to major depression

OR

B. Accept that, yes, I was going to have migraine episodes and it was in my best interest to:

1. Simply accept reality for what it was
2. Learn to live day by day
3. Plan for migraine episodes ... such as warning seat mates on jets that I may go bonkers and how they can help
4. Experience the disabling migraine episodes as comfortably as possible.

When I fought "migraine" I got VERY depressed, anxious, and was on way too many medications for the anxiety and depression and panic attacks.

When I accepted my life as a migrainer, my friends came to understand me, I was comfortable in my own skin, and the depression and anxiety went away.

It is so simple, yet so profound. I had to ACCEPT migraine episodes as a fact of life ... like the inconvenience of needing to go to the bathroom or my acceptence of my physical body with its limitations (I will never have a "six pack") My life is what it is today. I am having a "good day" so I am getting things done. who knows what this afternoon will bring, much less tomorrow or next week. I have to enjoy THIS moment - and I am ... I love being able to participate here.

I wish you well. When you and your husband ACCEPT your life for what it is TODAY, things will calm down immensely. Good luck!
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Re: so sad most of the time

Post  milo on Thu Apr 01, 2010 12:28 pm

You have found a great site! Welcome. Very Happy

You have had a lot of advice from members already. I totally agree with what Richard has to say, both in his suggestions of finding health care providers as well as dealing with anxiety.

Richard provides a gift to all who are willing to listen, by sharing some of what has worked with him.

That is what makes this site so great.

Each of us has dealt with the same monster.

You will find, with time, that a lot of your hope comes from watching others on this site, both in their struggles and in their success.

I strongly, strongly recommend that each person continues to search for the right doctor. The right doctor can make all the difference.

I fought very hard to finally get referred to my newest specialist, who I think may actually help me. It took a lot of work...but so far has been worth it. If it fails with him, I will continue to search.

Hang in there....we are with you in this fight!
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Re: so sad most of the time

Post  estre004 on Thu Apr 01, 2010 12:36 pm

Richard has good advice as far as accepting the migraines but that doesn't mean you can't keep forging ahead for answers and hoping that it won't be a lifetime of misery. I think that is what keeps most of the people on this forum going - in hopes that a cure or at least remissions will happen some day--which I'm sure it will (maybe not in our lifetime though--or maybe it will).

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Re: so sad most of the time

Post  ShelliB on Thu Apr 01, 2010 4:00 pm

I'm so sorry that you are feeling so sad. ((Hug)) I was in the same place when I first started this journey. You've already received a ton of wonderful advice...this is a great forum!

I have a team of three different doctors that I work with that have helped me greatly. I can function most days which is huge! My docs are an internal medicine doc, a neurologist and a psychiatrist. I am on several different preventive meds, anti depressents, and abortives for the pain. I am also allowed to get the same injection you get up to three times a month at my local hospital. It's a system that has worked for the most part. There have been some glitches, some really tough months were I could use more than the three injections....but I take what I can get.

I hope that as you start researching and finding some doctors that will work with you and hopefully some meds that will help as well, that you will have some better days. It's not an easy fight...but there are people here behind you all the way!
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Thank you for responding

Post  gayle on Sun Apr 04, 2010 9:31 pm

Just wanted to say that I really got a lot out of your responses. I found myself looking to see if I had some post from you all.

It also opened a dialog with my husband as I wanted to share with him some of your input and thoughts.

some days are better than others. And I will have to continue to hope and pray for all of us that we might find some relief. But know that your taking the time to respond did make a difference.

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Re: so sad most of the time

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