Hello everyone,

I know you can not do any diagnosing here, but I am so fustrated and have some questions that i hope you all can answer so I can help my doctor better by understanding what is going on with me better.

Here is my HA story.

Normal migraines started age 35 after total hysterectomy. Two yr. ago, age 38 they changed.  Out of the blue i started having what i call "peaks and valleys". I have had a constant daily HA for two years now. Usually with a low level pain, say a 3 for my "valleys", then i will "peak" 2-3 times a day.. The peaks can range tho, from a 6-10. I will say i have only been at a 10 twice if I am being totally honest in relation to a pain scale of 10 being "i litterally want to shoot myself" to end the suffering. Usually tho, my peaks are more on the 6-8 level.  My pain is ALWAYS on my left side, behind my eye, just above my eye, and into my temple. Sometimes it is stabbing, burring pain, sometimes it is severe throbbing pain w/ like electrical jolts. My left eye and eyebrow droop remarkably during my peaks. My nose becomes stuffy. I DO have aura with these (tho i have read it is possible to have aura w/ CH).

I have tried a host of preventives, and am also using imitrex stat dose, which really helps most of the time. Sometimes tho, i will have days where the max pains of 8 are hitting me everyday for two weeks, which is when i can no longer take it and i go to the ER. I seem to respond quite well to ER treatment, FLUIDS, MAG, STEROIDS, OXYGEN, PAIN, NAUSEA, DHE. It will bring me back down to my low level of pain or i will even get a day or two with NO HA, which is very rare these last two yrs.

My questions are:

1. Do I have to have a max pain of 10 every time to qualify for CH?

2. Do you have daily low level pain, or do you go completely pain free between your attacks?

3.Has anyone even become manic during a cluster period?  I  have not slept more than 3 hrs a night the last two weeks and i am compulsed to get up and clean, to the point of tearing apart closets, scrubbing bathroom floors, ect in the middle of the night. This is NOT normal behavior for me.

4. Any other thoughts would be helpful. My neuro had suggested Hemicrania continua, but i failed the Indotest, so i want to gather as much info as i can to ask him outright if I fit the criteria for CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This article provides some good information for the differential diagnosis of TACS

IF your doc hasn't seen it yet it may provide some useful info...

Peace Of Mind

Hey Miamigirl,

Ask your neurologist for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL...  Most migraineurs and cluster headache sufferers (CH'ers) are vitamin D3 deficient.  Moreover 80% of the CH'ers who treat this condition with the anti-inflammatory regimen with 10,000 IU/day vitamin D3 experience a significant reduction in the frequency, severity and duration of their CH...  Most of them have a pain free response.  Migraineurs do even better.

If your neurologist balks at your request for this lab test... see your PCP to get this lab test.

Take care and please keep us posted.

V/R, Batch

Before you start treating yourself it would be wise to get a good diagnostic work-up. If all possible, find a headache specialist.
===
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====
There are a number of serious disorders which mimic-CLUSTER but which are not headache disorders.
--

Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Chuh, thank you for the link. I have read so much on the TACs but with so many of them responding to Indocin, it rules many out for me since I already did the Indo test......

Thanks for ur reply!

Batch, thank you for taking the time to respond! I saw a headache specialist a few times. He did a ton of blood work. I am deficient in vit D, potassium , and he also said alot of HA people have the MTHFR mutation. I was positive for one copy of each, which helped to explain some of our infertility issues.  Anyways, this specialist was completely holistic, and wanted me to do an elimination diet, which for me is NOT an option being that I have always been underweight, but at that time was actually suffering severe pain from my hysterectomy, and weight fell to a frightening 86 lbs. he didn't seem to care about limiting my food choices and spent most of our visits talking about himself and journals he wrote and awards he won. Lol

There are a TON of so called headache specialists here in Miami, but then always end up being just plain neuro's. I have found one woman at UM, who seems like a ligit specialist and I am in the process of trying to get into see her.

My current Nuro will not even suggest a type of HA, so after two years with him, I still have no diagnosis. I am always proactive in my healthcare due to having quite a few chronic illnesses, so it's hard for me to be stuck like this. He did just start me on Neurontin yesterday, which I know is one of the meds used for TACs, NOTHING else has worked, and I have tried ALOT!  But I do get the feeling that he does not believe these are clusters.

Can u please explain what "shadows " mean? 

Thanks again for ur response.

Bob, thank u for the links! The first link u gave me shows the only HA Specialist I know of in Miami, which is so hard to imaging being that its such a big city with pretty good medical care. I am actually trying to get in with that woman....the second link did not have anyone in miami, closest was Hollywood. Of course I would be willing to travel but it listed him as "not certified".....

I actually have to be very careful of how many oral meds I take as I have ulcerative colitis, so I do not self treat. I was just hoping to get my questions answered to see if I sounded like a CH or not......it's been a long and fustrating journey. Thanks again for ur time.

You've asked several questions, including "what are shadows?" I'll take a shot at answering them:


Miamigirl000 wrote on Mar 19^th, 2013 at 10:50am:

1. Do I have to have a max pain of 10 every time to qualify for CH? No; if you read the KIP scale at the left, for us, a 10 is a screaming black bag that won't quit and probably sends us to the hospital for DHE IV, morphine, or some other stuff. Otherwise, we use our tried and true abortive therapies that almost always work. Like O2 and energy drinks. 2. Do you have daily low level pain, or do you go completely pain free between your attacks? Yes, this is what we mean by shadows. They are low level cluster attacks that need to be aborted just like any other cluster attack, or they can ramp up significantly. 3.Has anyone even become manic during a cluster period?  I  have not slept more than 3 hrs a night the last two weeks and i am compulsed to get up and clean, to the point of tearing apart closets, scrubbing bathroom floors, ect in the middle of the night. This is NOT normal behavior for me. Clusters are characterized by a restlessness and a near compulsion to move around, unlike migraines where a dark room and a comfortable bed can help ease the suffering. Not sure about in between attacks, though. 4. Any other thoughts would be helpful. My neuro had suggested Hemicrania continua, but i failed the Indotest, so i want to gather as much info as i can to ask him outright if I fit the criteria for CH.

There are standard and no so standard treatments for clusters which include a host of possible preventatives and abortives. But without a responsible diagnosis you and your doctor are shooting in the dark. The indocin attempt is worth a shot but is the easiest diagnostically to rule in or out. If it doesn't work, you don't heminrania continua.

Clusters are difficult to treat, but not impossible. Read as much as you can on this site and ask any questions you might have. May you be pain free in the very near future! God bless. lance

wimsey, THANK YOU!!!! I am so thankful you answered my questions.

To me it seems fairly clear, to either be CH or SUNCT, tho I don't believe it SUNCT as my HA can last longer than the 180minutes.

Between the cycling HA's, the left eye droop, tearing, stuffy nose, and strange fluid filled bumps that i get on my forehead during bad attacks, I would think this might be enough. Maybe i need to keep a better type of headache diary, the one my neuro gives me just has you put a x on the day u have HA and the level of pain. Of course, EVERYDAY last month had an x on it, with the exception of the two days directly after an ER visit that warrented OXYGEN, mag, and steroids. Those two days after I was completely HA free!!!!  I don't know, so fustrated and over this.

I just had my first round of Botox today, so i am excited that maybe that will help. And yesterday I was switched to yet another med, Neuronton, starting at 300mg, moving to 600 in 5 days. I hope it helps!

anyways, thank you so much for explaining things, and taking the time to answer my questions. I know this board looks very strict on the whole "self diagnose " thing, and so I understand that some things shouldn't be answered, but I just feel like Im really stuck in a bind and have been at this for two yrs now, doctor after doctor, med after med. My husband and my young children suffer in all of this also, which is my biggest modivating factor.

While it sounds like CH is the culprit I think you also have an underlying condition causing the continuous HA.  While we get low level HA's at times  that we call shadows it is not common to have them continuously.  It sounds like Daily persistent headache, with CH thrown in just for fun.  Obviously, I cannot say for certainty, and as you've already noted we are NOT big on self-diagnosis.  There are other things that can mimic CH, but have life threatening consequences.  You seem to be ruling those out, however.

You said O2 helps you.  I have two suggestions WHILE you continue seeking a good diagnosis.  I don't believe either of these have any danger to them as long as you keep checking.  First, I would talk to my Dr about O2 therapy at home, with a non-rebreather mask and a minimum of 25 lpm flow rate.  This would be totally safe even if you have another malady.

Second, I would suggest you pick up the supplements listed in the Vit D therapy and start them.  They have done wonders for many of us, and you've already noted you are deficient in D.  My wife suffers from Ulcerative Colitus as well, so I'm quite familiar with it.  I don't see anything in that therapy that would affect UC.  Again, I believe Pete's program would be safe for you as you continue trying to ascertain the root cause.

Be sure to run this by your Dr.  He will probably be leery of the Vit D regimen, but that is because Dr's have even less training in nutrition than they do in H/A's.  Most are afraid you will OD on D.  It is a good idea to keep checking your blood levels periodically just to be on the safe side, but you can tolerate rather high dosages for a while to raise your counts into the therapeutic range.

All the best,

Jerry

Miamigirl, you're welcome, and I second what Jerry (Callico) said above. In addition you ought to know a couple of things. First, botox may work but it isn't a standard treatment for CHs, nor a firstline treatment. The same is true of neurontin. It has helped some, but for the majority of those reporting here, it is an old line intervention for migraines that some neuros tried on clusters. In my opinion, and that's all this is, the standard treatments should be tried first. That's the advantage you have with a headache specialist over a general neuro. And even then, treatment must be driven by your own knowledge and experience in consultation with your doc. Keep us informed, and God bless. lance