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hallowich
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 4/30/2008 1:26 AM (GMT -6)   
Hi Everyone.  I am new here.  I hope this is the kind of group where one can vent and also where people might respond with possible suggestions.  I had migraines as a teen, they went away when pregnant with my daughter at 20 (29 yrs ago) and came back fiercely after a car accident 20 years ago.
Today we find I get migraine with aura, occipital migraine, optic migraine, abdominal migraine, high CSF pressure migraine, barometric pressure migraine..............you get the picture.  I suffer with daily headache.  My worst migraine lasted 30 days.  I was hospitalized for that one.  And for several thereafter.  My Chicago doctos sent me to MHNI in MI.  They have actually made great strides in whittling down the headache's severity and duration.  about 5 years ago, on the recommendation of my MHNI doctor, I went to the Mayo Pain Rehab Clinic outpatient program.  I did pretty well with the whole program and many things stick with me today.  That includes that since the ER doesn't do much to treat my headache I rarely go.  I think I went once last year.  One of the things MHNI discovered is that my cerebral spinal fluid pressure is too high, as it would be with a psuedotumor cerebri, but thank heaven there is no optical involvement.    A treatment for that was frequent spinal taps to relive the pressure (problem being the CSF replenishes itself so there is no long term relief).  I have had nerve ablations and radio therapy.  They too have helped to some extent in the past.  But I woke up during an ablation and it was an awful experience I am not in a hurry to relive. 
My big problem that I am venting on now is that I have had a "Sick" migraine for 7 days now.  It ebbs and flows but never goes away and I would say it is in the severe range from 12-18 hours a day.  It is never a low range headache.  I have tried Midrin- the next day I had hives all over my hind end! - Tylenol, Alleve, hydrocodone.  I have tried ice, heat, showers, Tiger Balm, massage........Of course I don't take the meds constantly or on a daily basis because that could cause a rebound headache.  So then there are days where I take nothing for relief except my Skelaxin and anti-nausea (either compazine or Zoloft).  I have no appetite.  If I do eat I might feel a bit better for a little while and then my nausea/ vomitting kicks in.  I am vomitting on a nightly basis.  God!  It makes me want to hold my head on my shoulders and push my temples so my brain doesn't explode!  I don't know what to do or where to turn.  I can't sleep.  My eyes hurt tremendously.  I am wobbly and light-headed.  And I don't know how much more I can take!  I have made it to work (I work evening shift at a Call Center) all but 1 day....and have had my regular 2 days off spent laying around like some sort of an invalid. I need suggestions on getting rid of this please!  I cannot have any of the Triptans due to a possible stroke when I was younger.  I have tried feverfew, zinc and magnesium.  I take Wellbutrin, Indocin, Skelaxin and Diamox for the headaches, Other meds for other health issues.  I have been on various anti-epilepsy but have allergy issues.  Help please!  Hubby is tired of hearing me cry!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/30/2008 6:53 PM (GMT -6)   
Though you mentioned plenty of abortive pain medications, as far as I can tell you are only taking Wellbutrin and Indocin daily, yes? Just from reading what you posted (and additional information may well make my recommendations unhelpful), it seems like you ought to try to expand your horizons regarding daily preventative medications. I have taken both Wellbutrin and Indocin (at the same time also). While the Wellbutrin sometimes improves depression, potentially eliminating an important factor in migraines, it is rarely found to be an effective solution for head pain. Similarly, Indocin, although a powerful antiinflammatory, is not one of the more successful preventative medications available. As you may know, generally the most popular daily treatments are anticonvulsants and antidepressants. In the first category you have drugs like Topamax, Zonegran, Lyrica, Lamictal, Divalproex, Neurontin, Keppra, and many others. While Wellbutrin can be an effective antidepressant, it is less commonly indicated for the simultaneous treatment of headache and depression. More commonly neurologists will prescribe tricyclic antidepressants or SSRIs. Aside from that there are many other classes of daily migraine treatments such as antipsychiotics (like Abilify, Seroquel, and Zyprexa), ergot derivatives (like Methergine), anesthetics (such as Mexiletine and Lidocaine nasal spray), and many others like antiemetics and (rarely) low dose daily steroids.

Another thing that I noticed from what I read in your post is that you seem to be taking an odd combination of abortive (or as needed) medications. You listed a couple of OTC painkillers (which are rarely effective in treating serious migraines) as well as the hugely more potent hydrocodone (Vicodin). I believe that you also indicated that you sometimes take Skelaxin, which, as far as muscle relaxants go, is fairly weak. The thing that seems to be missing is the middle-of-the-line abortives--ones that are neither extremely potent nor often too weak. Some examples of these are be triptans (like Imitrex, Maxalt, Frova, Zomig, etc.), antiinflammatories (like Toradol, Lodine, Voltaren, Diclofenac, etc.), antipsychiotics/neuroleptics (such as Zyprexa, Thorazine, Haloperidol, Droperidol, Phenergan, Seroquel and Klonapin--and many of these are also anti-nausea/antiemetics), muscle relaxants (especially ones that might be more effective than the Skelaxin), ergotamines (especially DHE, nasal or injectable), steroids and corticosteroids (dexamethasone or prednisone, short term), some antihistamines, and many many others. Also, when you said that you sometimes only take Skelaxin and Zoloft, I believe you meant Zofran--just to be clear.

In regard to the CSF pressure issue, drawing fluid via lumbar puncture is a common treatment for this specific problem. However, it is generally regarded to merely be a "stop gap" measure--a treatment to be used only until a more permanent solution can be achieved. You're very right in your observation that it will continue to be necessary over and over again unless you find a better solution. Generally these solutions are achieved either through the use of medication or through surgical intervention. There are various drugs that treat CSF pressure problems, most notably Topamax since it is also used very successfully in the treatment of migraine without CSF issues. Also, you have no need to worry about psuedotumor cerebri (the more recent name is actually Idiopathic Intracranial Hypertension, by the way) if there are no visual problems.

One more thought. Although many migraine sufferers (including myself) often feel the need to visit the ER during periods of especially intense attacks, many neurologists enthusiastically recommend against doing so. Believe me when I say that I know how intense the pain can get--I have not had headaches as long as you have, recently reaching the 5.5 yr. mark, but I frequently experience 10 out of 10 level headaches and have not had a single second/minute/hour/day in these 5.5 years of having severe headaches. I have many times wanted to just end things but I have still adhered to my neurologist's orders to not check into the ER. It's not an issue of being able to deal with the pain or not being able to deal with the pain--I in no way am suggesting that you have lesser pain tolerance because you have gone to the ER. However, the reason behind this prohibition is that you and I both have very complex case histories and conditions. While ER doctors may know how to make the pain go away, their lack of training in treating severe headache disorders (coupled with the fact that they are not familiar with your case history) can often make their treatment cause more harm than good. Ultimately the decision is your's and I would be the last person to criticize whatever that may be. However, I do believe that this recommendation has merit.

Hoping that you feel better soon,
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin

Post Edited (korbnep) : 4/30/2008 7:00:08 PM (GMT-6)


monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 4/30/2008 8:03 PM (GMT -6)   
I am curious about your CSF pressure. You said you did not have problems with your eyes, how did the doctors find this. I am asking because my primary care doctor mentioned this, but sent me to the neurologist instead. After looking up the symptoms, I seem to have many of these. But when I mentioned it to my neurologist he said he didn't see the pressure behind my eyes and blew it off. But more recently my eyes have been hurting really bad, especially my right eye but some times my left to.

hallowich
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 4/30/2008 8:46 PM (GMT -6)   
Hi Monthofpain-
First, let me suggest that you consider that the neurologist might be right. If you haven't had diagnostic testing, if your doctor is just brushing you off you might want to go for a second opinion.  Find a headache EXPERT in your area.  Try them.  If they concur I would not be overly concerned about IH.  Has your doctor done diagnostic testing?  And MRI? Has he done a spinal test to see if your pressure is high?  Have you been to a neuro-opthamologist to see if there is actual opthamalogic involvement?  Have you had visual field testing?    I do have eye pain and pressure, but that does not have to mean I have PTC....I don't have any measurable actual optic nerve involvement so that is not on the table. Yay!  In my case my docotors (and not just at MHNI but at a major University Hospital) are referring more to my problem as IH than than PTC.  I definitely do not have optic nerve development and I thank God for that! 
 
According to the Intercranial Hypertension Research Foundation...." Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above."  They do not say one must have optic nerve involvement.  There are split opinions regarding psuedotumor cerebri (PTC)  (or Idiopathic Intercranial Hypertension- IH) regarding the vision.  Some doctors feel absolutely that unless there is optic nerve involvement, there is no basis for that diagnosis. Others feel differently, in that if it looks like a skunk, smells like a skunk and acts like a skunk it is probably a skunk.
 
Personally, I would be very happy to not have this be one of the reasons for my migraines , but that is what my experts think.  So I accept that, deal with it and go on. 
 
Good luck to you!
Dawn
 
 

hallowich
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 4/30/2008 9:43 PM (GMT -6)   
Hi Ben-
It is to my and my treating physician's dismay that I have 2 problems with medications in general.......allergies to many and rapid growth of tolerance to many others.  Actually for the migraines I take Wellbutrin, Indocin, Skelaxin (I am allergic to most muscle relaxants), & the CSF diuretic Diamox daily.  I can take more Skelaxin if needed although it doesn't seem to make a big difference.  The Wellbutrin is at night- mainly to help with my sleep cycle.  I also take Sonata for that.  We have tried many different anti-epilepsy meds that I usually end up being allergic to.  I went toxic on Topamax....thought I was totally losing my mind.  I cannot take any triptans, ergots or DHE due to an earlier stroke.  Apparently the reason I had quit taking Midrin when I used it in the past is that I am also allergic to that.  Sigh.  We have tried the lidocaine nasal spray and at first it is somewhat effective but loses its efficacy with me rapidly.  We also tried a lidocaine patch that was developed by MHNI, and they suggested I try the Tiger Balm which normally will only help if I have muscle tension from the headache which creates that vicious circle.  I have tried oxygen with little result.  The OTC meds are what I take when I get really desperate and just feel- you know- I have to do SOMETHING.  The Hydrocone was prescribed for an oral surgery and I only ever take 1 and then very rarely.  Part of my treatment agreement is that I will not use narcotics or controlled substances unless given in an ER during a severe flare-up. You are right, I did mean I take Zofran - not Zoloft and if the nausea is not as severe I take Compazine.  Lodine did not help.  Toradol helped for a short time before my body grew accustomed and it didn't work any more.  I have tried Phenergan before....as an ER measure.  It makes me very hot and makes me want to run around for some odd reason :)
 
I also follow a migraineur diet as much as practical and have over the past many years weeded through the foods that seem to bother me and those that do not.
 
Poor treating physicians also have to work around my other health issues of which there are a few.......gastroparesis, GERD, diabetes, Crohn's disease, fibromyalgia, hypothyroid, allergic asthma, sleepnea and bouts of anemia due to the Crohn's........and their accompanying treating medications. 
 
Regarding the high CSF pressure, thank heavens I don't have any eye involvement, although according to the IHRF that is not required for IH....."But when the body cannot effectively absorb or drain CSF, intracranial pressure increases within the fixed space of the skull. And since the brain and the vasculature can only be compressed so far, intracranial pressure must rise. Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above."  Most of my doctors simply call it high CSF pressue though and that is fine with me.  I am not looking for yet another dreadful diagnosis.  Regarding treatment- other than past spinal taps and the Diamox they have raised the ugly spectre of a shunt but I do not want it - it would be fine if they could guarantee efficacy, but of course they can't, and I don't need anymore belly traume no matter how slight.

Regarding the ER, as I said I rarely seek it these days.  The last time I went they offered me acetamenaphen and when I rejected that (as I had already taken too much of it!) they suggested I was a drug seeker and asked me what exactly I DID want them to give me.  (I had not been to the ER in over 2 years).  I only consider it when I am ready to drive myself into a tree because I just can't take it anymore.
 
I have had a 10 of 10 for 8 days now.  With the exception of 1 day off sick and 2 scheduled off I have made it in to work....and stuck.  Amazing considering that I have to wear headphones and deal with phone calls for 8 hours.  People ("friends", family and some medical personnel) suggest I can't possibly have a 10 if I can do that.  Yes, well they aren't here watching the tears course down my cheeks as I work (unfortunately my fellow employees catch me at it occasionally).  And apparently they don't undertstand that I really need the paycheck- I don't get sick time.  They also don't know that the Mayo PRC taught diversion/distraction as a manner of - not stopping the pain but learning to try to life with it.  As I am sure you know, life does not stop, the earth doesn't stop turning, just because I have a headache.
 
Thanks for listening and taking the time to reply!
Hope relief will come to us all!
Dawn
Meds: Diamox,Sonata,Indocin,Wellbutrin,Skelaxin,Levothyroxine,Janumet,Hyoscamine,Nexium,Crestor


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/1/2008 12:25 AM (GMT -6)   
Thanks for the clarification Hallowich--as I said I was just writing in response to the information that you originally posted and I just wanted to cover all of the bases.

A few comments... according to the ICHD (International Classification of Headache Disorders, published by the International Headache Society) guide for diagnosing headache disorders, visual disturbances are a prerequisite to a diagnosis of IIH. See my post in the thread titled "constant pain", posted by charliegirl, or download the guide for your own reference at http://216.25.100.131/Upload/CT_Clas/ICHD-IIR1final.doc .

Also, in your response to monthofpain's post, you seemed surprised that his or her neurologist would not order a lumbar puncture to test for CSF pressure. Again, I recommend that you read my post in the topic that I mentioned in the last paragraph in which I explain that lumbar punctures (spinal taps) are not generally performed when there are no specific symptoms that indicate that there might be a potential problem with in the CSF. If one does not exhibit visual disturbances (a feeling of pressure behind one's eyes is not an example of this) and has an MRI that is read as normal, it is assesed that there is no reason to perform a lumbar puncture (or "spinal test"). Soreness in the eyes is experienced by a large number of migraine sufferers, the vast majority of which have no CSF problems, not to mention an risk of IIH. While the visual disturbances that can be associated with elevated CSF pressure can be observed by a doctor during regular vision testing, most of these symptoms are quite obvious to the patient. If you are not experiencing significant changes in your vision (how you see things, not how your eyes feel). If your neurologist says that your sore eyes are not cause for concern, I would tend to believe him or her. Personally, I have had very bad migraines literally non-stop for over five years. I do not have CSF problems but I very very frequently experience eye soreness and strain. I also commonly feel pain in my jaw, neck and back. These are all very very common symptoms of run-of-the-mill migraines. Unless there is something else to indicate others, these discomforts are in no way indications of a more significant problem.

While you doctor should certainly explain the reason that he or she may disagree with your concerns more clearly, if the doctor is well trained to treat your headaches and you have no reason to believe that he or she has steered you wrong in the past, then you'll probably have greater success in your treatment if you trust your doctor.

I wish you both well,
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


hallowich
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 5/1/2008 1:21 AM (GMT -6)   
Ben-
Thanks again for your response.  I certainly hope my response to you did not sound argumentative as that was the least of any intentions I could have.  I was, indeed, trying to clarify for you what drugs I actually take for what purpose regarding my migraine.
I too have eye pain, eye strain, pressure and photophobia.  I never thought they were due to PTC.  Just to migraine in general.  I know you don't have to have 1 single symptom for PTC to be present until- BAM.
The IHRF is currently doing new research to find the cause and treatments of IH.  That is why I took their definition as they seem quite up to date.  And I had not seen your other post as I have just subscribed to this forum.  I have no quibbl with any doctor or scientist that feels PTC is not a problem without involvement of the optic nerve, I just noted that not every doctor or scientist ascribes to it.
I was not trying to quibble regarding testing for monthofpain.  If she did see another dr and the new dr thought there was was any possibility of IH then I would expect a spinal tap to be done.  Frankly though, I had my first spinal tap as part of my general headache work-up, not specifically for IH....and then was found to have high CSF pressure.  I thought my work up for migraine to be careful but typlical as it was similar at both institutions.  I would expect or desire to be seen by a headache expert, not a neurologist who has no special interest in the area as they are usually less "up" on all the latest.  I wasn't surprised the doctor didn't do a spinal tap, just asked if diagnostic testing including that had been done.  I also started my email with the assurance that the neurologist that has already been seen may just be right. 
A full workup for a headache to my knowledge includes MRI, MRA, CT, physical therapy review to see if there was a neck injury or such involved, blood tests, neuro-psych testing, visual field, neuro-opthamology appt, etc.  Of course it depends on how severe the headache, how frequent and how distressing for the patient also.  But if the patient is already feeling unsure of a diagnosis they should feel comfortable with getting a second expert opinion.
Even a neurologist can see the swelling of the optic nerve.  Or an intern.  I was only suggesting a neuro-optho because that is where I was sent.  On the other hand I am probably not typical because I DID have visual field losses.  So perhaps a regular optho is just as good in most cases.  I guess I should have said an opthomologist, not neuro-opthamologist.
As I stated in my original email I have several different types of migraine.  This is not too uncommon although some times the doctor does not differentiate between them.  The high CSF pressure is definitely affected by barometric pressure and in the stormy Midwest that means migraines 2-1/2 - 3 seasons out of the year.  Winter is usually a great "off" season for me :)
Hopefully things make a bit more sense all around.  I wish you the best with your headaches Ben.  I used to have 10s on a daily basis - for years- and know how awful that is.  If I went back to that state I cannot say what I would do at this point.  I still have daily headache and 4-5 days a week they are 8 -10 for 6-18 hours a day.  But it truly is a big improvement over the way I was living.....amke that existing!
I have great faith in my doctor, he has been very good at sifting through a lot of symptomry and even helps me in other health areas that he sees problems in that my MD misses (now HIM I don't trust!).  I also have great faith in my previous headache doctor who was good enough to admit that my headaches were too severe and too diverse for him to handle and sent me to MHNI.  You are right.  Having faith in your doctor makes all the difference in the world in how you are able to handle an illness.  Thank Heavens for Dr Rozen!
Take care and thanks again!  I enjoy talking with someone who is well informed.
Dawn
 
 

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/1/2008 2:11 AM (GMT -6)   
Hey again Dawn,

Your post wasn't taken as argumentative at all, though I'm afraid that mine may well have come off that way. It was not at all my intent to argue, but really to point out facts that I understood in a different way or to provide extra information. I can definitely see how it may have come off as trying to correct you or the other poster.

As far as IH/IIH goes, I do feel that the ICHD/IHS is a reliable source, though I don't believe that there's any reason to think that the IHRF is not. Personally, I have never heard of a lumbar puncture being part of a normal workup unless there are specific symptoms that necessitate such testing. Though nearly all of the information that I have read has stated that visual disturbances of some noticeable kind must be associated with IH/IIH (though I have read that the older list of more specific types of visual disturbances that were thought to always be associated with the condition has been pared down--but not eliminated), I am merely a migraine sufferer with a BS in molecular biology and a considerable amount of time dedicated to reading migraine research--but no medical training.

Finally, your message concerning seeking a second opinion is truly right on the mark. Whether a doctor may be a genius in his or her field or a dope, if a patient does not have confidence in his or her treatment than another doctor would almost certainly be better.

Thanks very much for your input. As well-intentioned as our posts were it just goes to show how difficult it is to accurately communicate ideas on the internet (though it is definitely a very valuable resource!). Best wishes,

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 5/1/2008 9:15 AM (GMT -6)   
Thanks for the information. I am just very questionable to everything my neurologist is telling me for the fact that when I asked one of my customers at work about him after I found out her husband him self is a neurologist at first she was saying he is nice and everything then when I told her I went to him she just said "Oh, I can get you into my husband". I am planning on switching to her husband when the time is right.

My neurologist has done an MRI, MRA, and MRV, with the MRI he was mostly looking to make sure my tumor on my pituitary gland is not causing any problems. He has not done the spinal top which I am happy about but at the same time wondering if this could help. I got my headaches for two months straight, within this time I went from a healthy 20 year old who has not been to a hospital since the day I was born, worked thirty hours a week, nannyed another 10 hours and being a full time student with 15 credit hours to someone who couldn't celebrate my 21st birthday, been in the ER twice, only worked 5 hours a week in order to keep my job, stopped nannying, and droppped some classes at school, and did go to many of the others I did keep. My neurologist has put me on topamax but I had full out vertigo from that, so he switched me to corgard, magnesium, and riboflavin. They are working but I am still getting daily headaches and some days alot worst then others and this has been going on for another month. When I mentioned the eye pain to my nerologist he didn't say anything about it. I have an appointment to get my yearly eye exam this weekend and I am going to mention the whole thing to her when I go. See what her opinion on it is.

You said you when to a doctor in michigan, what is his name and how far from detroit is that. I am going in July for a vactation to see family and if I am still having problems it might not hurt to get looked at by some one else.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/1/2008 10:14 AM (GMT -6)   
Hey again monthofpain,

I may be reading your post wrong, but are you saying that you've been experiencing these headaches for 2 months now? If so I would highly recommend sticking with your current neurologist, or, if you feel compelled to change, sticking with that new neurologist for at least a fair amount of time. The testing that you described is very rarely accomplished within 2 months of the onset of head pain. Considering that "spinal taps" are only ordered if a patient is experiencing very specific symptoms, if your present neurologist does not feel that one is necessary then it's unlikely that any neurologist would order one, especially so early on in treatment.

My advice to you: Unless I totally misunderstood your post (and my apologies if I did), at least try the teatment regime that your neurologist is planning. You mentioned trying Topamax and having a problem with it (which is very common), but if you haven't yet tried other medications then you honestly need to be patient and take hope from the fact that there are dozens upon dozens of different drug and treatment options available to you.

If you have migraines that are difficult to treat, it is rarely the fault of the neurologist. Even so, 2 months is far too short of a period to be making any conclusions from. In my own personal experience, although I was experiencing excruciating pain every moment of every day, I stuck with the first neurologist that I had for nearly 3 years. Nothing that he prescribed me ended up helping, but, considering the fact that I later switched to a nationally renowned headache clinic that ALSO could not decrease my pain in any way, the first neurologist can hardly be faulted for his lack of success. The bottom line is that, unless you have a very good reason to think that your doctor is grossly neglecting your care, 2 months of treatment is far too short of a time period to draw any conclusions from. And again, I'll repeat that, while your neurologist should have explained why your eye pain is not something to worry about to you, his decision that it is indeed not worrisome reflects the fact that your neurologist likely knows what he is doing. Eye pain, again, is a very very very common symptom of nearly all types of headache, even those that are experienced by totally healthy people who might end up with a headache with such symptoms after a stressful day of work.

While you ought to be concerned about your chronic headaches, I feel confident agreeing with your neurologist on this one. It seems like he is trying out the more commonly used headache medications and will move on from there after assessing their efficacy. I received the exact same type of treatment, as, I can assure you, have the majority of people posting to this forum.

However, as we said before, if you aren't comfortable with your doctor than it is rational to switch. Just don't expect a significantly different type of treatment. And it's also unlikely that you'll stumble upon a doctor that will make an issue of out the eye pain, again assuming that there is not additional related medical information that strongly suggests otherwise.

I wish you the best.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 5/1/2008 1:57 PM (GMT -6)   
It has been 3 months since the onset of my headache.  When it first happend I visited my primary care doctor and she gave me an imitrex shot(this was the last week of feb), and told me to call at the end of the week if the pain is not gone.  I did call her back and she sent me to the ER for a ctscan and they prescibed imitrex pills, and I went back to my primary a couple of days later. She prescibed percocet for when it got really bad and I could not stand the pain, drew blood, and sent me to an ENT.  The ENT did a CT of my sinuses and sent me to a neurologist.  It took a month for me to get into the neurologist and in the mean time.  I started to get really dizzy and ended up back in the ER where they put me on Antivert.  I got so frustrated with all the pain and dizzyness and went back to my primary care doctor and she took me off Birth control pills, and told me she does not believe they are migraines and to call back in a week if it is not better and we will do a spinal tap.  I did call her but she had decided that she wanted me to see the neurologist before doing this and she got me into the neurologist the next day.  Then within a two week span they did the MRI, MRA, MRV, and more blood work.  The neurologsit did start me on topamax which I stopped taking and that is when he put me on the Corgard (blood presure medication), magnesium, and riboflavin. 
 
I know migraines are something that people just have to live with, with the help of medications to lessen the episodes and severity of them.  This is just all completely new to me, no body in my family has ever had a migraine.  I think that the reason they rushed all these tests is because I am still very young and within the first couple of days I was not able to do anything I would normally do.  If I wasn't in class I was in bed or on the couch resting, this went on for the first 2 months. 

hallowich
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 5/1/2008 6:02 PM (GMT -6)   

hi monthofpain-

It sounds to me like you really had a thorough work up.  You are young but then again I first had migraines when I was in my early teens and they lasted until I was pregnant. The problem comes when we are young, scared and inexperienced with these sort of health issues and things just keep seem to be getting worse.  It is really rough - especially to be young and feel like you are missing out on your life.  I would say your neuro is doing everything he should but if you want a 2nd opinion there isn't anything wrong with that.  I would not be overly concerned about not having a spinal tap if the neuro didn't feel you needed it.  I would ask my primary though why she had felt it might be a good idea- that could help to set your mind at rest.

Sometimes it takes a while to find the right combination of meds or anything that help a ton -  many of us are still looking for just the right combo. Migraines can be difficult to treat and to understand, on the part of both the patient and the doctors.

I don't know if you will feel better or worse knowing that I have eye pain and pressure, dizziness, ear pain, jaw pain, back of the headpain, ear noises, stuffiness, tears and many other symptoms when I get a migraine. Very frustrating to me are the verbal & written problems I get.....problems with words coming out right, occasional dyslexia, that sort of thing (these are also common problems with migraine). I do get auras before most of my migraines. I do have several different types of migraines.

Have you ever looked into what foods you have consumed before a migraine or dizzy spell set in?  There are foods that are best for many folks with migraine to avoid.  Also, believe it or not exercise is good for folks with migraines and some even find that the endorphins that are released from light exercise are helpful when a person has a migraine.  There are lots of websites out there with helpful information and ideas. I would suggest passing any new ideas, supplements, herbs, etc past your neuro to get his opinion though.

You asked about my doctor.  It is actually a clinic- the Michigan Head Pain and Neurological Institute in Ann Arbor MI.  (www.mhni.com).  They do have a long list of new patients so it can take some time to get in to see them.   Although I love my doctor to death and am very grateful to he and the clinic for all the help I have had there over the years I must say I am considering changing to Diamond Headache Clinic in Chicago because it is much closer to home.  I am following up every 3 months with MHNI now and that entails a 4 hr drive.  They won't prescribe anything new over the phone, and although they do get existing patients in for emergency appointments so if I have a bad flare up (like now) it would mean another 4 hr drive each way.  That is starting to get us down as my husband, the driver, isn't overly well either. So going to an out of state clinic definitely has draw backs!

I hope you feel at least somewhat improved soon.  Best of luck!

Dawn

 

 


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/2/2008 12:46 AM (GMT -6)   
monthofpain said...
It has been 3 months since the onset of my headache. When it first happend I visited my primary care doctor and she gave me an imitrex shot(this was the last week of feb), and told me to call at the end of the week if the pain is not gone. I did call her back and she sent me to the ER for a ctscan and they prescibed imitrex pills, and I went back to my primary a couple of days later. She prescibed percocet for when it got really bad and I could not stand the pain, drew blood, and sent me to an ENT. The ENT did a CT of my sinuses and sent me to a neurologist. It took a month for me to get into the neurologist and in the mean time. I started to get really dizzy and ended up back in the ER where they put me on Antivert. I got so frustrated with all the pain and dizzyness and went back to my primary care doctor and she took me off Birth control pills, and told me she does not believe they are migraines and to call back in a week if it is not better and we will do a spinal tap. I did call her but she had decided that she wanted me to see the neurologist before doing this and she got me into the neurologist the next day. Then within a two week span they did the MRI, MRA, MRV, and more blood work. The neurologsit did start me on topamax which I stopped taking and that is when he put me on the Corgard (blood presure medication), magnesium, and riboflavin..


Hey again,

A couple of the things that you've written about cause me to be concerned for you. I too developed migraines when I was young and was given a very thorough workup very quickly as well. While I've tried every medication that most headache clinics ever prescribe, it worries me that it has only been three months since the onset of head pain and you've already been through so many different medications. Aggressive treatment is always desired and I consistently demanded it from my neurologists. However, one unfortunate thing that every one of us migraine sufferers must deal with is the waiting time when trying a new prescription. Frequently daily medications can take over a month to achieve desired results. And very commonly the dose ends up having to be modulated (usually upward). This tacks on another few months to the process. So, the fact that you have already tried and abandoned Topamax and are trying another (much less potent) cocktail is worrisome. Naturally we all want to find the drug that will successfully treat our migraines as quickly as possible, but it requires a significant amount of patience--oftentimes trying one medication for several months or longer. Even if you stopped taking Topamax because of the side effects, it is documented that they typically become significantly more bearable over time. In my own case, Topamax never helped me a single bit, but that didn't stop me from taking it for more than about 3 months to be sure that it could not help (especially given the general efficacy of the drug).

Another thing that actually concerns me significantly more is the appearance that most of your migraine/headache treatment is being performed by your primary doctor or ER doctors. The simple fact is that these doctiors are not at all qualified to make responsible decisions when a trained neurologist is available. Although I noticed that you said that your primary decided to hold off on the spinal tap until you saw the neurologist, the simple fact is that a general practitioner should NOT be ordering an uncommon, invasive test that is not recommended by a neurologist. Sometimes primary care physicians, as a result of their lack of prolonged study or experience with headache treatment, often go "overboard" when exposed to more severe cases. Because they see so few, they may decide that they want to order nearly every test available for fear of overlooking something due to inexperience. A neurologist, in that position, treating a three month old migraine disorder with no particularly worrisome symptoms (at least, as far as you have shared with us) would know that a spinal tap is unecessary and most likely would not go beyond ordering MRI, CT scans, and bloodwork. Regarding the medication (Antivert) that your ER doc prescribed, it's generally an anti-nausea drug that is unlikely to do much to help your head (this nicely illustrates the problem with seeing ER doctors for severe headaches--you either get prescribed medications like antiemetics that are simply too weak to help or you are given opioid drugs to treat the pain, a solution that in many cases can cause more harm than good--at the very least the most you can hope to gain from that is a few hours of relief). Similarly, I am very surprised that you were given percocet for your head pain, especially in the first month or so that you were experiencing your headaches. In my opinion (and I'm fairly certain that most headache specialists would agree with me), this is just plain irresponsibility on the part of the primary doctor. Because he or she is not trained to try to find a solution for your migraines, you get prescribed strong painkillers to temporarily deal with the symptoms as a result of the generally helpless situation the doctor is in. As I've said time and time again, I have profound respect and trust for doctors. However, having a primary treat severe headaches (even if they haven't been around for very long) is a poor, unproductive choice. Generally these doctors will attempt to treat you out of a sense of responsibility for their patient's wellbeing. But, if you do have the ability to see a headache specialist, do yourself a favor and let her or him make the decisions and, if you both decide it's worthwhile, have your primary work in an adjunct position to work toward your goals.

One more word of advice: having migraines for three months sucks--plain and simple. However, from the tone of your posts I infer that you have become rather panicked about the situation. While many times these reactions are largely out of our control, do your best to take a step back and relax. Several months of frequent headaches can be brought on by any number of factors. At this point there is really no rational reason to be worrying about longterm disability. Even if your headaches persist (which may or may not happen), there are scores of unique, effective drugs available, along with a rather plentiful bundle of associated treatments. The odds are truly in your favor. There is one precautionary measure that I would strongly recommend though. If you can, start seeing a trained professional that will provide you with talk therapy (a psychologist, social worker, and, in less common cases, a psychiatrist). You already seem quite anxious and worried about your condition and, while I do not know whether you are suffering from depression or not, you have an increasingly high risk factor. Even if this therapy just ends up helping you get through a short term period of bad pain, you'll be a lot more likely to stay mentally healthy if you start as early as possible. If things unexpectedly end up lasting for a longer period of time then you'll have gotten a head start at preventing the deterioration of your lifestyle.

I wish you well. Remember to keep calm and make good decisions and you should be feeling better in no time at all!

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 5/2/2008 9:53 PM (GMT -6)   
Tyes the reason I stoppped taking topamax was because of the side effects, but they where not just being dizzy or minor side effects. I could not stand up with out holding on to something and my neurologsit and I both agreed this was not worth staying on. And with the percocet, yes my primary care doctor was the one to prescibe it to me, when I mentioned it to my neurologist all he said was do you have enough left. And the antivert was not to help my head aches that was prescibed to help with the dizzyness I was getting at the beginning.

As far as being worried especially at the begining is more due to the fact that I was diagnosed with a bengin tumor on my pituitary gland three years ago. The work up I recieved bloodwork and MRI was done to look at that and it ruled out other things as well. I am seeing a neurologist I just could not get in to one right away and since I was trying not to fail my classes and throw my entire career out the window during this whole time that is why my primary was trying to help me in the mean time.

I do admit that I am very panicked at time over this whole thing but it is not because I am worried something is majorly wrong with me every thing has already been ruled out. It is more worried about the effects it is having on my school. I am done with the semester as of today so I am hopeing now I can concentrate on being more relaxed. I do have to say that this migraine thing came at a really bad time since this was supposed to be and started out as my easy GPA boosting semester and ended as a detrament to my GPA and about to lose scholarships over it.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 5/3/2008 9:29 PM (GMT -6)   
I totally understand what you mean about the panic of how much the pain is affecting your life, not really the worry of a major problem. I would consider myself very depressed regularly. At times, severely, nearly dangerously depressed. Part of this is from having pain for almost six years, but a much bigger part is from having to drop out of college (after losing my full ride scholarship), having no concentration, major memory problems and just pain feeling stupid, compared to my old lifestyle of constantly reading, tutoring peers, almost always setting the curves on tests in AP high school classes or honors college classes. It sickens me that I had plans to go to medical school, probably earn a MD PhD and put all of my considerable willpower into changing the world--but now I am unemployed, doubt that I will earn a college degree (even though I am one semester away from having a BS in Molecular Bio with Honors), and am panicked that I will ruin the life of my fiancée. Anyway, trust me when I say that I understand. However, it took many years before I felt this hopeless and worried about the future. From the point you are at right now, you have no need to get very worked up. Focus on improving your health and, if you are as worried as you seem, regardless of the cause, seek psychological help. This is an absolutely necessary measure for ANY migraine sufferer.

Also, I know about having additional workup early on. Several years before I developed migraines, I had experienced a nerve disorder stemming from both the spine and brain. Not to say that glandular problems are not worrisome, but they are not as likely to lead to major CNS issues. After a couple of months, especially, if you are just experiencing normal (though severe) migraine symptoms, there is very little cause to worry about your condition any more than other patients complaining of severe prolonged pain (again, at THIS point).

Finally, regarding the drugs: 1) The neurologist that so quickly acceded to your percocet prescription at your early stage, is he or she a general neurologist, or a trained headache specialist, especially associated with a specialized clinic? Because less specialized neurologists tend to focus more on the pain because they have less resources to treat the headaches themselves. 2) I just want to reitterate that the symptoms of Topamax often DO improve over time (and 'over time' usually means at least 6-8 weeks or more). I was on a gigantic drug cocktail including Zonegran, an anticonvulsant very similar to Topamax for nearly 6 months before we abandoned the treatment. I too could barely stand, tripped and feel over nearly every time that I stood up and could not walk up and down stairs even with someone holding me. I, many times, remember walking down a straight hallway with a level floor and seeing the walls twist and the floor develop a strange slope. Obviously I fell. In fact, more than once, even, I was filling out medical forms and forgot my name while trying to complete them. It was a VERY hard time, but the treatment was promising, so that I, even now knowing that it didn't help at all, wouldn't have changed a thing. Side effects can be verrrrry hard, but sometimes the possibility of an effective treatment can justify sticking with a drug for longer than one would like. However, it IS ultimately a very personal decision, and I do not at all mean to second-guess you. I just want to provide some perspective.

Hang in there. Things WILL get better. And, academically, in most cases, if you end up losing scholarship money because of illness, you'll almost certainly be able to get it back once you are well enough to resume schooling.

Take care,
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin

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