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Severe Pain and Suspicious Doctors

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Migraine Headache
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Posted 7/6/2009 9:26 PM (GMT 0)
I've just started seeing a new doctor at a specialty headache clinic, and he seems very enthusiastic and compassionate.  I think he has good ideas and that we both have high hopes of finding a treatment for my daily, severe headaches.  The thing is, it's only been a few weeks since I saw him and we began a current course of treatment (a few preventatives, a couple of abortives) ... and, as I've let him know, my headaches are still bad, if not worse on some days.  Now, I realize that many of the everyday treatments are going to take time to work at their most effective dose, and it will take some time for us to work together and find that correct dose for me as well.  But doesn't anyone out there ever feel like I CAN'T WAIT ANY LONGER FOR RELIEF???!!!!!  I really want to ask him for something stronger (he currently gave me only a small number of some fiorcet 3's, which have not helped me...nothing else that's a painkiller or narcotic), for in the meantime.  I don't want to take tons of pills, but what about when this pain is just too much?  I have found that doctors of us pain sufferers seem reluctant or even suspicious when it seems like we're asking for "drugs."  Has anyone had a successful conversation about this with their doc?
Posted 7/9/2009 2:30 AM (GMT 0)
Yes! I have found the same to be true. It is very hard to let a doctor know what works for you (from experience) without coming off or being perceived as a "drug seeker" (Addict etc)

I would have the conversation with your doctor, face to face and be very calm and try to keep your emotions separate from your actual pain.

"Doctor, I understand xyz medication is going to take some time to work. What do I do in the mean time to fight this pain (spell out the specific pain such as "stabbing, severe, relentless pain on the right side of my head near my ear" ) or ask specifically for a plan of action IF it gets to the point of an ER visit. Explain that you want to be prepared and need to know how to address this as it affects your ability to function during daily/routine activities!

Good Luck!
Posted 7/11/2009 6:36 PM (GMT 0)
I'm a healthcare administrator who has seen Seeker behaviour more times than I can count. The people most likely to become addicted really aren't the alcoholics or those perceived as drug users. It's the working person who starts taking something addictive to help a sincere medical problem.

Everyone thinks they will stop and can do so "as soon as the pain stops". The only problem is the pain never stops unless you take more of whatever you've been prescribed. You are completely incapable of differentiating pain from your ailment from that caused by an addiction. Few people come back from that state but those who do know it's so wretched; they will insist on never taking a single pill again-even after major surgery, etc.

Whatever you can do to avoid taking addictive medication is worth doing. Do your own research and explore every possible alternative. For me, one of the biggest helps for excrutiating classic migraines was drinking LOTS more water throughout the entire day. I made it a priority that upon waking, before eating and before bedtime I would drink almost a quart of water. That may not work for you but it's been shown to helps lots of headache sufferers of all types.

I had to do something since my migraines were God-awful and nothing seemed to help at all. Some of the meds I tried were worse than the migraines. I was migraine free for several years just from a very balanced, healthy lifestyle and increased water intake.

Unfortunately I seem to have developed a super rare form of migraine that involves severe tremors, dizziness, a little nausea, temp drops, little to no headache, etc. A barely discernible aura occurs once in a while and sometimes there is no warning at all...but that's a different story.

Hope you've had some relief since your posting!
Posted 7/11/2009 11:39 PM (GMT 0)
Akhiker. OH do tell us about your RARE Migraines. I for one want to hear the story please and preferrably not in RED font. It makes me get an instant headache.

 

HARA turn

Posted 7/12/2009 1:25 AM (GMT 0)

Sorry but don't know why it appears in red font on your computer.  On mine it's in black and I haven't selected any color for the message.  I've seen a few people here w/ blue messages but nothing in red.

As for your annoyance on my info; I wish I had something that was workable the same as everyone else.  I came here hoping for a little help from anyone who has experienced something like I'm going through.  If you think it's fun to start shaking so bad you can't walk and sometimes without warning; think again.  It stops just short of convulsions.

I'm now afraid to drive since I can't predict these episodes.  Even more afraid my license will be taken away.  I'm bypassed for projects at my job because no one wants the liability of stressing me into an episode even if I tell them stress doesn't seem to be a factor.  Think it's special to hear your soon to be sister in law arguing w/ your brother about why I shouldn't be part of the wedding party because I might "have a fit" and steal her day?

It does, however make me feel better that I haven't become so bitter that I attack other people without provocation.

Posted 7/12/2009 5:46 AM (GMT 0)
I'm sorry it was not your posts that were in RED. I know we all get grumpy sometimes. I was just asking about the RARE Migraines you have.?..... I did not mean to offend you. I will not post in here anymore.

HARA - Yes, I know some people like me and some don't.

Posted 7/12/2009 8:29 AM (GMT 0)

Hi akhiker!!! I too have tremors when i have my migraine, often before i get one attack of aura followed by the headache and often i barely have none headache just the aura witch in mine case is speech problems nausea, paralysis etc. The symptoms that you´ve mentions here above is symptoms of the rare form of migraine that i have FHM= Familial Hemiplegic Migraine and Sporadic Hemiplegic Migraine.

In 2006 i had some attacks with Tremors ( Yes shaking like a leaf ) that lasted for days . I don´t have the temrature dropping however but i no that some can have fever too. And yes it is rare but some of us can have theese attacks without the actual headache ( i some times have they too ) But many people and many doctors have never heard of this form of migraines, I am sorry that your attacks come without any warning, i guess i am lucky then beacuse mine gives me a warning 5-15 minutes before ( Feels like i´m shaking a little inside ) I too do´nt drive the car anymore beacuse the first attack i ever had, came when i was driving so...... that surely scared me.

Take care!!!!   Sweden

Posted 7/12/2009 3:11 PM (GMT 0)
THANK YOU Sweden! I'm sorry you have this but it really makes me feel better to chat w/ someone else who knows what I'm talking about.

The dismissive docs are the worst!!! Unfortunately for them that I decide whose contract gets renewed! :o) Love the demanding probes of "how long" and "when did it start exactly"...it's a little hard to be exact when inability to concentrate is one of your primary sx!

If I might ask, what kind of work up was done for you? I'm just not comfortable w/ just a basic chem panel and an EKG. Are there any meds that work for you? I've had 7 really bad attacks and bunch of minor ones in the 2 months since it started. It shows no signs of letting up unfortunately.

When I had classic migraines; I used imitrex but the pen made me feel worse than the headache at times so I stuck to the pills. Doesn't seem like that would work for this though.

I also have Raynaud's bad but diltiazem really helps with that. I have polyarthralgias that a Rheumy in Seattle is working on differentiating now. I take Indomethacin but it really doesn't help a whole lot. I used to run about 7 miles a day before that started a year ago. Now I walk with my dogs and try to do whatever yoga or pilates I can but it isn't much.

My trigger for the CMs was change in barometric pressure but I've found no particular triggers thus far for this. Still eating super healthy and tons of water so nothing I can change there. I've even done an elimination diet to be certain of what fruits, nuts or grains I have any allergies to but there was little help there. The fruits I thought caused me problems definitely do and I try not to eat them or in very limited amounts.

Luckily my first attack came at work. Two nurses held me in a vice grip walking me to a wheelchair I was so bad. Now I try to stay in my office and close the door when I get any warning. The confusion really stinks too. It's scary when you stop and have to reason w/ yourself why you're doing something. It's also embarrassing when you realize people notice it and can affect on your job.

People understand pain. They don't understand uncontrollable shaking and confusion.

THANKS AGAIN Sweden!!! Sorry to bombard you but you're the first person who has any idea what it's been like.

And Hara, you did try to make me feel stupid by saying how "everyone" wanted to hear about my problem. If you're in a bad mood review your posts before sending them. No one needs that kind of negativity in a healing or help forum.
Posted 7/12/2009 7:08 PM (GMT 0)
I did not say "everyone" in any of my posts.

 

I was just very interested in what you had to say about the Rare Migraines you have. Plus you are not stupid and no one else is either. Some people just want some knowledge about things that is all.

 

I've also been having some migraine problems. (sighs)

 

Plus I only said, "I know WE all get grumpy sometimes." Although I was not grumpy in either of my postings. And I do re-read my posts before I send them.

 

I don't usually post in this forum anyway and I'm not going to anymore so please don't send me anymore in this thread. I don't need the negativity either. Now I'm hurting I'm going to go lay down.

 

HARA cry

 

Posted 7/12/2009 8:34 PM (GMT 0)
Hi First i have to say that i no this was a topic about stupid doctors and so on, well bealive me i have met many of them too. I have had migraine for over 20-25 years  and in those years have been several and several times at the ER beacuse of such a pain that i was ready to get use of my head if that could help me. After many years one of the times in the ER one neuro said that he thought i had migraine and he gave me one preventive med but it did´nt help at all and when he heard that the second time i met him, he said :- Well if Imigran doesn´t help you at all then it ca´nt be migraine, it has too be coming from your bad neck.

 

Exuse me???????? as we all no one medicine doesn´t fit and works for everyone .......... so YES many doctors are in the wrong line of work.

I often say that there are good and bad car mechaniks, so of course there must be good and bad doctors too!!!!

In 2006 i got paralysed when i was in my car and ended up in the ER and was in the hospital for a lttle over one week, they thought i have had a stroke

they took a MRI and some bloodtest but all was ok, and when my body worked and i could move again they´ve sent me home and said we don´t no what iswrong with you.

 

After that i started to have attacks of paralysis and speech problems etc etc 4-6 times a week from 8-24 h every time, many times for many days too.

It was´nt before i met another neuro professor in 2007 that i got the answer that i had FHM, wow what a relief to finally get the answer.

 

akhiker i don´t mind at all it´s ok to bombard me with questions, beacuse no one can understand it if they don´t  have been through it themselves!!

As you see above they´ve took MRI and bloodtests all was ok, but when i finally met my neuro professor ( He´s really great and understanding by the way )  The first thing he said to me after i told my whole story was that he thought he new what was wrong with me, but that he had to rule out some things first, so i got EEG and more blood test and strenght test and so on.

 

He after theese said that i had FHM, and then he told me that there is 2 diseases who have similar symptoms and he had to role them out first one was Myastenia Gravis and the other one was a rare form of Epilepsy, well the first thing he suspected was FHM so he was right he said, and it was 17 years since he had a patient like me with FHM...... so here it´s  VERY VERY rare, but of course my home country Sweden is´nt so big.

 

I Use Lamictal= epilepsy med , as a preventive med  for theese attacks and YES there have been a really big different in my life, now i only have 3-6 attacks per month and seldom so hard like before.

 

But i have migraine headaches many times a week instead and for that i have some pain killers and Zomig nasal.

 

akhiker there is a topic called " Hemiplegic migraine " here on page 3, go and check it out we are many there who has been talking about this condition, I was soooooo glad when i found others here who had theese same problems as me, SO I UNDERSTAND YOU COMPLEATLY!!!!

We can chat there more!! if it´s ok for you?

 

OKEY enough for today i hope you all will bee migraine free!!!!!

 

With Love / Sweden

Posted 1/13/2010 12:43 AM (GMT 0)

Thanks for all these responses about my question ... basically how to approach your doctor regarding what works for you, how to be direct and your own advocate without seeming like .... I don't even know what, I guess without seeming like an addict or drug seeker. 

I appreciated the responses from health care workers, and I really do appreciate the difficult situation they face; especially emergency room staff who do not know me when I come in screaming, Please!  Help!  The PAAAAAIIIIN!  Oh, and last time only x,y,z painkiller worked.  Thanks.

I am facing the situation again, as my beloved doctor has left the practice and I will now meet another doc in the practice.  I've been on a great program over the last six months and hope not to have to defend or change anything!  I've been quite responsible, though, because the last thing I want is to become dependent on a medication or addicted or to have one stop working from over-use.  It's such an ongoing balancing act!

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