Constant true vascular migraines

[shelbyanne]

For the past 5 years i have had migraines that last into the next day with no pain-free periods. I have had all the tests done( CT, MRI, blood tests, and any others my doctors could think of), seen my family doctor, 2 nuerologists. 1 peditrician, a phychologist, counsellor,a chiropracter, massage therapist, a physical therapist, ive tried yoga, exercise, and every preventive/pain killer available. Ive lost two jobs due to these migraines, and am now unable to work/go to school. As anyone can probably guess im frustrated beyond belief and dont know what to do from this point. The only answer ive gotten is that i have " true vasuclar migraines"... this doesnt help me because they havent been able to cure them, if anyone has had these or have any ideas as to what i can do please let me know..

 

[Retired]

Re: Constant/true vascular migraines..

Hello Shelbyanne and welcome to the Forum. Because we monitor all new messages that are posted, it isn't necessary to post a similar question in more than one message section on the Forum, because we'll see it, even if it's only one message.

Sorry to hear about your difficulty in finding relief from your migraine.

I am curious about the nature of your headaches..are you sensitive to light during these episodes and do you experience nausea as well? From the sound of it, you seem to be incapacitated by your headaches.

Has any of your doctors asked to ever maintain a diary of possible triggers for for any length of time?

In addition to propranolol, and the prospect of Botox, what other medication treatments have been used to try to provide relief?

You may have noticed a number of posts, discussions and resources in the Migraine Section of Psychlinks you might wish to investigate as well.

 

[shelbyanne]

Re: Constant/true vascular migraines

Thanks for getting back to me,

Light and sound effect my migraines, and i experience nausea everyday with them.

Ive tried every medication out there in an attempt to stop these migraines but none have worked. Ive started myself on magnesium because i read a post on this forum suggessting it may help. Ive done the migraine diary and it was not helpful to my doctors, ive found that when it gets bad the only thing i want to do is sit in bed. My parents are taking me to accupuncture next, so i'll see if that has any effect. Honestly over the years theyve only gotten worse, and they are to the point now that i have had to go to the emergency room twice.

I check the migraine section everyday, which is where i found the magnesium thread and the botox one, im hoping someone has had or has a smiliar medical condition, and can give me some advice concerning mine.

 

[Retired]

Re: Constant/true vascular migraines

Ive done the migraine diary and it was not helpful to my doctors

In examining your migraine diary, did you notice any consistency of possible triggers over time? You are probably aware of the classic migraine triggers such as caffeine, weather changes, nuts, nitrites in food, alcohol and hormonal changes during your periods.

Some can be avoided so that a few episodes can be reduced.

Have your doctors prescribed any of the triptan class of medications?

Triptans include sumatriptan (Imitrex, Imigran, Cinie, Illument, Migriptan), rizatriptan (Maxalt), naratriptan (Amerge, Naramig), zolmitriptan (Zomig), eletriptan (Relpax), almotriptan (Axert, Almogran), frovatriptan (Frova, Migard, Frovamig), and avitriptan (BMS-180,048).

As you know, triptans are not pain relievers, but rather act on the neurotransmitters thought to be responsible for migraine attacks.

Most recently, many doctors have begun prescribing NSAID anti- inflammatory medication along with a triptan to deal with the two mechanisms of action believed to cause migraine pain, vasodilation and inflammation.

Have these strategies been tried?

 

[shelbyanne]

Re: Constant/true vascular migraines

Im just starting the "migraine diet" so we'll be able to see in two weeks if food contributes to the severity of my migraines, and yes ive tried most of the triptans, they really dont seem to help. there were no consistencies in my migraine diary due to the fact that i have a constant migraine ( wake up with it and go to bed with it) with no pain-free periods, thats why ive decided to cut out all migraine triggers and start eating foods that fight pain.

 

[Retired]

Re: Constant/true vascular migraines

Other than propranolol that I seem to recall you mentioned you were taking as a preventative treatment (prophylaxis), have your doctors considered any other options for prophylaxis treatment, such as a calcium channel blocker or a tri-cyclic?

 

[Daniel E.]

Re: Constant/true vascular migraines

Did you get a CT of the sinuses, too?

I assume this does not apply to you, though, unless you had some obvious trauma to the nose:

Constant migraines may be from unlikely culprit: a deviated septum - Houston Chronicle

Regarding other treatments for migraine, you may find some info here, including the use of Anafranil/clomipramine that Steve alludes to in his post above:

intractible migraine - Google Search

"intractable migraine" - Google Scholar

intractable chronic migraine - Google Search

intractable chronic migraine - Google Scholar

I assume you have already tried Topamax?

 

[shelbyanne]

As far as what my doctors have told me, we've exhausted every option other than botox.. ill have to check about the septum, read the articles youve provided(thank you by the way) and ask about the other medications because theyve only ever told me the generic names for the medication ive been on so i really have no idea.

 

[Daniel E.]

Something I came across while searching for refractory migraine:

New daily persistent headache - Wikipedia, the free encyclopedia

SpringerLink - Neurological Sciences, Volume 32, Supplement 1

NDPH seems to have the same meds in common as with intractable migraines. However, with NDPH, overuse of medication does not seem to often cause rebound effects, unlike with migraines:

New Daily Persistent Headache (NDPH) is a recognized form of primary headache. It was first described in 1986
as a self-limiting form of a chronic daily headache. NDPH is unique in its clinical presentation. Many patients with
no prior headache history present with daily headache from onset, and they can state the exact date their
headache began. The abrupt onset of headache typically develops over less than 3 days, it is constant and
unremitting. Headache is usually bilateral with varying intensity and can be associated with migrainous symptoms.
NDPH is also a primary headache disease prevalent in young women (second to third decade).

Since abrupt onset of headache suggests secondary causes, the diagnosis of NDPH depends on exclusion.
Some of these secondary disorders may have low or elevated cerebrospinal fluid pressure, cerebral vein
thrombosis, carotid or vertebral artery dissection, chronic subdural hematomas, posttraumatic headaches,
temporal arteritis, postmeningitis headache, chronic meningitis, sphenoid sinusitis, cervical facet syndrome,
leptomeningeal metastasis, intracranial neoplasm or mass lesion.

The course of NDPH was described as benign initially since NDPH resolved in 73% of patients without any
treatment in 2 years. However recent studies revealed that majority of patients suffer from NDPH for many years
and headache is refractory to treatment.

When NDPH patients start overusing medications, getting them out of analgesic overuse typically does not improve the headache. The latter finding is in contrast with migraine or TTH headache patients who develop medication overuse headache.

There is no specific treatment strategy can be suggested for primary NDPH based on clinical evidence. Based on
limited number of patient reports, suggested treatments include medications such as valproate, topiramate,
gabapentin, SSRIs, tricyclics, tetracycline derivatives, mexiletine or intravenous corticosteroids, and interventional
approaches such as cervical facet blocks, atlantoaxial blocks, or greater occipital nerve blocks.

Though NDPH is recognized as a primary headache disorder with discrete clinical features, clinical, therapeutic
and pathophysiological studies are inadequate at present. Further studies are needed to elucidate the disease
and to guide the revision of the current International Classification of Headache Disorders II criteria for new daily
persistent headache.

http://www.comtecmed.com/cony/2011/Uploads/assets/bolay_headachedebate2yes.pdf

As in this example, when rebound headaches or medication overuse headaches occur, it is unlikely that patients will respond to preventive treatment; you would not expect her to respond to topiramate or valproic acid because most individuals do not respond in the usual manner when they are also experiencing analgesic rebound.

For this patient, treatment involved tapering her off of the offending agent, in this case the butalbital/acetaminophen/caffeine combination. After doing so, her headache frequency decreased and after 3-4 weeks of being off the butalbital/acetaminophen/caffeine combination, she went days and then weeks without having headaches.

Medscape: Medscape Access (requires free registration)

 

[Retired]

Shelbyanne,

Because you are experiencing a migraine disorder that seems to have resisted numerous treatment strategies, I would propose you ask your doctors to refer you to another medical center they know specializes in resistant cases. In fact you may have to do some research on your own to find such a center, because sometimes local physicians may not always be aware of specialized treatment centers outside their own geographical area.

It's not to discredit your own physicians, but if you feel the services you have been receiving are not able to find a treatment that provides relief, you may have to go outside your immediate area.

For example, if you have the resources, you might investigate agetting a consultation at a place such as the Migraine Clinic at Mayo Clinic.

When it comes to your health and quality of life, you may have to investigate some extraordinary measures.

Is there a university hospital that has a medical school in your area where you can get a referral to their Neurology clinic?

FYI here's another information resource on migraine from MedicineNet

 

[Daniel E.]

It's not to discredit your own physicians, but if you feel the services you have been receiving are not able to find a treatment that provides relief, you may have to go outside your immediate area.

And that is one of the recurring themes of the TV show Mystery Diagnosis. Another theme of the show is to see an internist or a different internist. For example, in one episode, someone presenting with migraines was referred by the internist to a cardiologist, who apparently found a more underlying cause of the symptoms:

mystery diagnosis pvo migraine - Google Search

---------- Post added at 02:22 PM ---------- Previous post was at 01:44 PM ----------

Regarding some of the work done by Mayo:

Mayo clinic researchers in Arizona found that patients suffering from chronic migraine headaches who have found no relief through the use of medication may find hope through occipital nerve stimulation (ONS). Their clinical studies show ONS as a safe, effective treatment for chronic headache. More than 32 million Americans, 70 percent of whom are women, suffer from migraines, and many sufferers progress to a chronic condition, experiencing headaches more than 15 days per month. It is estimated that approximately 40,000 people in the U.S. do not respond to existing treatments, and many may be candidates for alternative therapies. The Mayo Clinic study involved 16 patients, 13 of whom where females age 21 to 52. Of the 16 patients, nine underwent bilateral stimulator placement. Patients experienced an average decrease in pain of 54 percent. Six patients had no change or less than 50 percent reduction in pain, eight reported 50 to 95 percent pain relief, and two had complete relief.

Headaches

 

[shelbyanne]

thanks dave, but it seems that my doctors thought of that because ive tried most of the medications listed. i was thinking about going to the mayo clinic, but that really seems my last option, my trigger diet hasnt started working yet but i need to give it more time, and i start accupuncture on monday so hopefully that should improve my pain. As i said before if these pills ( propanol,maxalt, and axert) then we move onto botox, and if that doesnt work i wont have anything other than the mayo clinic to look at for help. I need to figure this out because i am unable to work or go to school.. its limiting me more than i ever though it would.

 

[shelbyanne]

Update:
Propanol still not working,
Accupuncture is helping the pain in my neck but not affecting migraines..

Does anyone have any information on whether migraines are caused due to PTSD or because of a past-traumatic experience, because ive heard it several times and i have no idea if its true or if the two could be connected in any way.

Thanks again to everyone whos been helping with advice and suggestions, i really appreciate it.
Shelbyanne

 

[Retired]

I believe migraines can be triggered by stress, which may be a secondary cause to PTSD, but that would be something to ask your doctor who knows your medical history.

You mentioned earlier that the Mayo Clinic might be an option. Considering the poor success you have had so far with all the usual treatments, would Mayo, be the option to consider at this time?

It would seem your local medical resources are not able to find a lasting solution, so this might be the time to seek help from competent reources elsewhere.

 

[Daniel E.]

"PTSD may be a risk factor for headache chronification, pending longitudinal studies to test this hypothesis"

Post-Traumatic Stress Disorder in Episodic and Chronic Migraine - 2008

The 34 research articles that cite the above study:

http://scholar.google.com/scholar?cites=8200639010839995919&as_sdt=40005&sciodt=0,10&hl=en

Related articles:

http://scholar.google.com/scholar?q=related:DyZURLuFznEJ:scholar.google.com/&hl=en&as_sdt=0,10

---------- Post added at 10:46 AM ---------- Previous post was at 10:21 AM ----------

Also, as you may know, some hospitals now have Mindfulness-Based Stress Reduction programs, partly based on the work of Jon Kabat-Zinn, who wrote Full Catastrophe Living.

 

[shelbyanne]

So where I am right now, is waiting for my next appointment with my neurologist which is in late January, my dad wants me to get another MRI/CT but i think that my doctors wont see the need for it, also botox is next on the table so if they doesn't work the only option i have left is to go to somewhere that CAN help, like the mayo clinic, I've talked about it a lot with my parents and they said that that may be what we have to do to get this pain to stop.

So far nothings helped, and it seems the pain gets worse everyday. I really want to thank you for helping me so much, its a nice change that someone believes me and understands what I'm going through.

 

[Chain Lightning]

Funny you should post this now as I have had several migraines in the past 2 months. They were like yours lasting into the next day or two even...I couldn't standing light, noise or stress...I was also nauseous. I felt my entire right side of my head throbbing constantly. I NEVER used to get them in my life. I was at the chiropractor and told her about them and she found this horrible rotation in my C1 (1st neckbone). She adjusted it for me with instructions to not turn my head for a while and put heat on my neck. Since then I feel WAY better, not one single migraine so far (1 week)...now my shoulders feel relaxed because when one thing is off its affects the muscles around it. I gtg more later if you're interested.

 

[shelbyanne]

Well im really glad you got yours figured out so quickly
we do or did have a lot of similar symptoms, unfortunately for me ive been to a chiropractor.. and they all said was my xray was normal and it must just be because my neck is so tight. After going there for over a month nothing had changed, right now im in accupuncture, and this helps my stiff neck but not my migraines, which means the two are unrelated...
Im hoping a second CT/MRI will show something the first ones didn't.

 

[Chain Lightning]

Have you tried putting heat on it to relax the tight muscles? Tightness means something is wrong, usually its linked to stress, C1 misalignment like I had, medication, diet....drink caffeine? The stiffness may be a result of a misalignment that could affect the blood flow causing the migraines. It may seem unrelated but I bet it isn't. Its not normal to have a stiff neck all the time...its common but not normal. At the least maybe the acupuncturist should try addresing bloodflow not stiffness.

My luck with chiropractors has been varied...the one I have now is the only one who really helps me (I have scoliosis mid back). She is the only one who does not twist my neck or spine, she uses instruments only.

 

[shelbyanne]

yeah, ive tried heat and cold. And all the therapists ive been to ( massage,physio,chiro, and accupuncture) say that my neck is tight but they have no success with figuring out why or helping it. Ive tried all the medications, i drink one cup of tea a day because any more than that can cause migraines, and ive done the trigger diet.. the next things im going to try are contacts instead of glasses, going to a different area to see if the pressure systems make a difference, and botox. Ill keep updating this thread with what shows promise and what doesn't. I dont think i could try another chiropractor... they're very expensive and i cant afford it right now, when i went i had to go three to four times a week at $50 a session.. im going to try and get another CT/MRI and see if anything comes up before i jump back into something like that.