Hi. I'm new...just joined coz research & a few drs saying but not really diagnosing me over yrs with CH. I have an appt with new neurologist who's supposed 2 b "H/A genius" on Mon the 7th. Thank God!  Been waiting since Dec. Been diagnosed with "migraine, tension/stress HA" but not CH. Since 9-10 yrs old (53 now) I've had 10 concussions, my last being on 1/1/2014. Have had severe fibromyalgia too since 10 (not diagnosed till college coz no name then & they were clueless), arthritis, Lyme disease, CFS, & just chronic pain all over since I was 10 yrs old. I wudnt no how 2 act w/o my pain. It's all I've ever known. But my God these HA's r worse than labor. I swear!  Been in ER 3x in 2 mos, saw same ER dr, he sed I described CH perfectly & gave me shot of Toradol which gave me 30 whole mins of relief! :o. GP has had me on Bupap/Fioricet which duz NOTHING so I stopped taking it. I'm not sure WHAT kinda HA I have. Symptoms:  mostly on right side over eye, but every now. & then will b on left, entire forehead hurts, pain goes from rt eye to temple, behind ear all way down back of head and into neck & sumtimes out to shldr. Usually stops down neck. I wake up in middle of PM hurting, sleeping on & off till I wake up with excruciatingly unbearable pain in these areas so bad I eventually sit here & bawl which of course makes it worse. I hafta get up & walk round the house which is also painful due to my FM & arthritis but I can't sit or lay still I'm hurting so bad. I get very depressed, then mad & almost manic about it (why TF ME?  What did I ever do 2 deserve this, etc etc & it just ticks me off more). I have been in therapy all my life for PTSD (abuse by mom), depression, anxiety & panic attacks. My family has all but abandoned me due to "ur horrible mood swings & always complaining about pain" & think I'm faking it or it's psychosomatic. They have no clue. I wish they cud spend one day or a week in my shoes & then c wot they say!  My present HA started at Christmas & hasn't stopped. They usually last up to 6 mos & then I wake up one day & it's totally gone for months or up to a year. So this is 3-1/2 mos approx 4 this one. 2 days ago it was gone when I got up but yesterday it returned with a vengeance. My vision stays blurry (even with LASIK surgery 5 yrs ago which they screwed up & only got me to 20/70) & now have glasses again 6 mos ago but can't c a thing. Sum days it's better than others. If these ARE CH's they're chronic & not acute or episodic so can sum1 pls tell me if my symptoms fit CH or stress or migraine?  I've researched them all & don't no what 2 think but am inclined 2 say CH. I'm currently taking Neurontin (2400 mg/day which duz NOTHING), Tylenol, Advil (both nothing), Cymbalta, Klonopin, Abilify, Trazodone & Ambien 4 sleep, Lisinopril & Metoprolol 4 EXTREMELY HIGH BP & DO NOT WORK as it's still very high (only since Sept -- it was 180/158 in hospital in Jan!  :o. 2 days ago when my HA disappeared my neighbor took my BP & it was 118/84, the best it's been since Sept. Bottom # usually hovers round 120 or so. Dr sed he thot I was gonna drop dead of stroke or heart attack (thx a LOT Doc!!  :-/ but I'm hoping that since Verapamil is a CH treatment the new dr Mon may take me off one BP med & replace it with that. Have also read -triptan drugs work. Nvr been on one so idk. Also a cop told me other day she has CH's & takes Maxalt -- can only take 2x/MONTH -- but I looked it up & it sez that's for classic migraine not CH & u CAN take it up to 4x/day dep on dose so idk wot she was talking about!  Anyway I'm new & am not sure what my HAs r. They're debilitating; I can hardly function; hold onto the walls or either stagger round house like I'm drunk or sumthing (I DONT drink or smoke), my nose runs all the time & my eyes r runny, congested, sneeze 5-6x/2-3 hrs. Dr sez "sinusitis or allergies" & I now find that's all related to CH. Was recently diagnosed as bipolar (in Jan) but now psych is saying it's CH possibly coz the 2 conditions can "mimic each other", "make u seem bipolar when it's the pain 'making u crazy'", u can have both & one feeds off other, u can b misdiagnosed as bipolar when it's a CH, etc etc. Duz ANY1 have bipolar & CH?  I'd like to know the real relationship between the 2 b4 I c neurologist on Mon!!  Internet sez diff things & am confused about the two. I may have both or just CH -- idk. Frankly idk wtf is wrong w/ me the way my head hurts. I cry, yell, scream, wanna pull my hair out, wanna bang head vs wall but that'd b more painful, if possible, pray to God they stop & pray to God to send a lightning bolt to end my suffering. I cannot take much frickin more of this. No1's really diagnosed me properly in 40 yrs & have given me all the wrong meds none of which have helped. I hear the suicide rate is high among pple with CH. I can c why altho I'm NOT suicidal. However with this pain idt I'll b around many more years coz unless they find sumthing to help I'm afraid my head may just blow apart.  :'( I'm so glad I found this site. Hope sum1 out there can offer sum advice b4 I c dr on Mon. I like to go to new dr as knowledgeable as possible. So please help!!! :)

Hi and welcome

Great to hear that you're about to see a headache specialist on Monday as this is what you need to get a definitive diagnosis. We constantly find that very few doctors, even amongst neurologists, have the skills and the experience to deal with complex headaches. Since you've multiple medical issues it'll make it even more complex.

From your description of your symptoms that are many things that sound like it could be CH but there are others that don't. But with the multiple issues this is where the skill of the neurologist will come in as they will be able to try to figure out what is causing what symptom.

It is possible that you may have more than one headache type too, which can also confuse things. There are a few people here who have a headache collection, including myself.

I've not heard of people being diagnosed as bipolar when they have CH, but then given the lack of skills in some doctors nothing will surprise me. I have seen statistics of it taking on average 5+ years before people get a definitive CH diagnosis. Equally it is perfectly possible for someone to be bipolar and have CH just as it is possible to have CH and a broken arm. Having both need not mean that they are connected.

For your appointment I'd suggest you make notes of what you want to discuss, what questions you have and that you tick off / update your list as you go so you don't miss anything. It is so easy to get out of an appointment and then remember something you wanted to ask.

The cop who told you about only taking Maxalt twice a month is not correct. You can take them a couple of times a day plus they can work for CH, not just migraines (I've previously used it for both), although it isn't the most effective CH abortive.

Hopefully Monday is when can get or start on the path to a definitive diagnosis that results in effective treatment. We all know what it is like going through the process of trying to find out what is wrong with us when we're in pretty bad pain.

If it is CH that you have then you've found the best place to find out all about CH from people who really understand it as we either have CH or support someone with it.


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I get very depressed, then mad & almost manic about it (why TF ME?  What did I ever do 2 deserve this, etc etc & it just ticks me off more).

This is something that we're very familiar with. What might help is if you read the following which was written by someone here:

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Thx Mike 4 ansring so soon.  :). I agree since I have multiple chronic pain issues it makes the diagnosis harder (have been thru this all my life). Took 10 drs saying no & then a physical therapist unofficially diagnosed me w/ FM & sent me bak to my dr for "trigger pt test". Active in 18/18. I was 19 & had suffered since I was 10. So with HA all my life I know this will all complicate things. I'm used to it. :-?  Just want relief tho.  & as u say some symptoms sound like CH but sum don't. My opinion is that a lot of my chronic pain conditions' symptoms overlap. Like fibromyalgia & CFS. almost the same!  Except CFS is caused by the Eppstein Barr virus & my dr sed my FM caused by repeated trauma. My Lyme disease has similar symptoms but caused by tick bites. Grew up on huge farm, rode horses all day every day in wooded trails & Mom wud pick 10-15 ticks off me every day!  So things overlap & u can have more than one disease at the time. I get that believe me. So idk bout my HA. that's why I was asking here 2 b as much informed as possible.
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As far as the bipolar & CH relationship, I read several articles all day long one day last wk researching that & found they DO have the mood swings (coz of severe pain especially if chronic & last for months like mine), symptoms can mimic, etc the same stuff I mentioned b4. Thas one reason I got confused.  [smiley=confused.gif]The hospital dr diagnosed me as bipolar but NVR addressed the severe HA I had even tho I stayed in my room crying some days. Sed I was depressed & wanted to go home. Well. DUH! Yeah I did coz I missed my beardies but that ain't why I was crying!!!  Tried to tell him & he wudnt listen. Uggghh!!!!   [smiley=ugh.gif]

And the Maxalt!! I KNEW she was full of it!!  2 pills a MONTH!  She sed they were WAAAAY 2 potent to take sooner!  Right. Do I look like I just fell off a turnip truck yesterday??   [smiley=mad.gif]

And the notes & questions 4 my new neuro. Been & done started on that last week!!!  Believe me, I've seen enough drs to no to take notes, especially with my memory, to ask when u c them. I hope he's got plenty of time coz I've got quite a list with all my conditions.  :)   And ur rite again: it all starts with the proper diagnosis & only then can they hope to treat u properly.  But I've had so many CT scans & MRI's since I was 10 it's not funny. They always sed migraine (it isn't on just one side like migraines are & start In & around my eye on right side & go down head like I described. My cheekbone, teeth & jawbone hurt too & that's not migraine. Light & sound almost put me on the ground & certain smells too. But my HAs I believe have NVR been properly diagnosed. I do think I have CH but mayb with tension or sum other kinda HA or just chronic FM pain. Who knows?  Hopefully this dr is as good as they say he is. If he cabt figure it out I'll hafta start over & find sum1 new. [smiley=ohjez.gif] I live in USA, in state of NC. I hope ur rite & they can help diagnose & treat. TY 4 responding. It's good to talk 2 sum1 who knows altho I'm sorry u go thru this too. I wudnt wish this on my worst enemy.   [smiley=engel017.gif]

Chronic Lyme can give you all of the symptoms you've listed..including raging headaches. You mention you have Lyme...I assume you've had the ELISA and Western Bloc tests to verify the disease? If not, I encourage you to have at least the ELISA done. I have 2 daughters and a granddaughter with chronic Lyme . The were misdiagnosed with MS, FM, and of course the "all in your head".

Hoping whatever the cause you are soon pain free.

Judy