Neurology Disapointment

[Alicia Clusterhead]

I wanted to get some advice and opinions from you guys on this site. I went to a neurology specialist today and I wasn't all that impressed with the advice I received. First of all, she told me that she doesn't believe that I fit the profile for cluster headaches based on what is written on my file (I have no idea what the previous doctors have written about me as they usually don't share that information). I described them as intense headaches located behind my left eye with a quick onset(usually within seconds to minutes) that peak and last approximately 30-45min. Now, (I didn't used to) I have lingering headaches(shadows) that can last anywhere from 12-24hrs.  The peak is so intense that I can't sit still and I can't talk, usually only whimper or groan. I can get upwards of 8 attacks in a day for a period of 1-3 months before they go away in remission. This remission period can last anywhere from 1-2 years. The pain is so severe it feels like a hot poker is being stabbed into brain through my eye and I have never felt anything as painful. Still, the neurologist believes that this is a type of migraine, not cluster. She wants me to stop oxygen and the Imitrex, telling me that I will probably have a stroke and may have already caused scarring in my brain. These treatments are the only thing that work during an acute attack. I am on the Vitamin D regime which I believe is working as I haven't had a cluster since my Prednisone treatment stopped. The thing is, she wants me to stop the Vit D treatment as well. I'm terrified guys. I'm afraid that she will prevent me from being able to get the injectable Imitrex with this diagnosis change and I probably will no longer be able to get the oxygen. Hopefully My cycle for this year is over so I wont have to worry about it for a while, but I am feeling really discouraged. She recommends that I start an antidepressant called Amitriptyline which is apparently affective for Migraine prevention. She also said during my next "migraine" I should drive to the ER (as if I can take myself anywhere when I'm having an attack" explain my symptoms (as if I can talk) and get migraine cocktail IV to abort the headache. Sorry for the long rant, I just needed to vent. Let me know what you guys think, does this sound more like a migraine than the clusters you guys get? 

[Bejeeber]

Ouch. so sorry you tangled with what seems to be the wrong neurologist! Looks like it's second opinion time to me, this next time accepting nothing less than a [bold for emphasis] headache specialist neurologist.

Meantime I would set all advice received from this one such as "stop the Vit D treatment" to hard ignore.

The more concerned you become about losing the Imitrex prescription, the more I'd suggest splitting your remaining doses in order to significantly conserve supply, etc. (if you're not already doing this).

[Bejeeber]

And while I ordinarily shy from anything resembling amateur diagnosis, no, your attacks don't sound like migraines to me.

1 hour ago, Alicia Clusterhead said:

she told me that she doesn't believe that I fit the profile for cluster headaches based on what is written on my file

I would hope a female doctor wouldn't be capable of one of the worst CH medical miscues, but there is a long and terrible history of ill informed doctors who have simply seen 'female' on a patient's profile and denied a CH diagnosis. 

[kat_92]

I’m really sorry to hear about this. Without being negative, you need to find a new doctor asap. The fact that she wants you to stop oxygen is WILD. From what you describe, you fit the profile. I have seen about 6 neurologists since college…many of them insisted I had migraines. If your blood work is fine, there is no reason to stop the d3 regimen. I am annoyed for you over this. 

[BoscoPiko]

Hi @Alicia Clusterhead,

I saw this post a bit ago and wanted to respond but I was on a tight schedule. First and foremost I couldn't agree  more with @Bejeeber with regard to a second opinion from a headache specialist (headache specialist clinic). I was told.. when all this kill joy happened, that I was going to be allowed to see a headache specialist that turned out to be nothing more than a practicing nurse under a neuro. (Not down playing the wonderful nurses in our healthcare system) however the information I received was entirely migraine oriented (find a dark room, get a cold cloth, try to sleep (um can't happen during a hit) blah blah). My initial diagnosis was also migraine and I used to even log them as such on my calendar. I suppose I got lucky after tossing Doctor after Doctor out and being allowed to see a neuro that had a small clue. One thing I will never forget is the fact that he had seen my chart and told me as much but then asked me to tell him in my words what was going on and what I felt like when receiving a hit. I was almost stunned into silence but then everything came out like a flood. His response was " I can see (video appointment) that you are terrified to experience this again and I have no doubt this is CH. I felt relived that finally someone knew this was not migraine but at the same time devastated that I was afflicted with something so awful.  I was lucky to get diagnosed after a year and change. Many wait years and years. Don't stop being an advocate for your self. I am a bit stunned that this gal, after your description still wanted to chalk all to migraine. My only question is the  12 to 24hrs. that you mentioned and somewhat makes me think it maybe this could be another awful form of head attack? Either way I sure hope you continue to PUSH. We know us best and I'm so sorry for your pain.

[Alicia Clusterhead]

Thanks for the responses guys, it's so different hearing from people who know what you are going through! The good news is that she did agree to send a referral to the headache clinic where hopefully I will be seen by a headache specialist. I still worry that I will hear the same thing there as I did today, but hopefully I will have better luck. Honestly, this site has been such a blessing, especially since I think the Vitamin D is working and this isn't information you can easily find researching Clusters on the internet.

[kat_92]

@Alicia Clusterhead if the vitamin d regimen is working please don’t stop it. The side effects are minimal and it’s good to be on year round. I don’t understand how a doctor can tell you to come off vitamins 

[BoscoPiko]

6 minutes ago, kat_92 said:

I don’t understand how a doctor can tell you to come off vitamins 

No money Kat. Awful but as simple as that..

[Bejeeber]

5 hours ago, Alicia Clusterhead said:

I am on the Vitamin D regime which I believe is working as I haven't had a cluster since my Prednisone treatment stopped.

I like to think the Vit D regimen is responsible for your nice remission, but in an attempt to remain objective, and risking going overboard on a technicality, I'd also acknowledge that while typically we find our attacks returning following a prednisone taper (mine always have), occasionally prednisone treatment will put a CH'er into a sustained remission continuing after taper down, and it sounds like that could be an additional possibility in your case.

I still like the D theory though. 

[jon019]

.....a headache specialist is absolutely critical....most neurologists don't have any more knowledge about CH than any PCP. i  had brain surgery (not CH related) from a highly skilled neurologist... who saved my life. out of curiosity and to amuse myself, i later asked him about CH. his response: "don't they use inderal for that?" yeah doc, about 30 years ago...he also had no idea about O2 as an abortive. same lack of knowledge from 4 or 5 previous neuros...and one even diagnosed me (WITHOUT telling me) as having "basilar migraine"...i don't even know what that is...except NOT!

....what immediately struck me in your post was the seeming diagnosis based on previous notes...sheesh and DAMN! i now sign up for every mychart from every provider...it's YOUR  info. and it's plainly evident from BoscoPiko's description of her experience that a forthright, direct, face to face relaying of the nightmare that is CH can go a long ways with a provider able and willing to listen...

[jon019]

1 hour ago, Bejeeber said:

occasionally prednisone treatment will put a CH'er into a sustained remission continuing after taper down, and it sounds like that could be an additional possibility in your case.

.....yup, could be...the very first methylprednisolone IV and taper stopped a cycle mid cycle for me....it was miraculous and i thought i had found THE answer. sigh....never worked again (2 more trys) after which i avoided as there are potential serious consequences.....and other measures got dialed in. 

 

1 hour ago, Bejeeber said:

I still like the D theory though. 

...FOR SURE!....and provided blood levels in range is exceptionally safe and widely effective....

[spiny]

Alicia, your experience was wretched. I would love to stick all these 'know it all docs' in a room and give them ONE cluster with only each other to look to for help. No meds, no phones, no O2, just each other. Then they can 'judge' the situation. You know, lie down, turn off the lights, etc. Preferably a dozen in a ten foot square room! Glare..........

Yes, it sounds like CH. Yes, they will try the migraine box no matter what if they were educated years ago, are arrogant, or are too big for their britches. My current Neuro did the same thing. I was livid. I had a return appointment and that is the first time that I made my husband go with me for a doctor visit. He made one statement: 'I want my wife back. She leaves at 8pm every night and enters hell with the pain.'  The doctor smartly changed his 'diagnosis' right then. All because the MAN said X. Which is infuriating, but did get me what I needed. 

Not sure of your marital state, but if you are married, perhaps drag him with you for support? Should not be needed, but it can be. 

The funny thing was that I was referred to him by my NP for Clusters when I had to take too much carbamazepine, was seeing in triplicate and still getting hit. So, my doctor believed me, but the Neuro did not. 

The suggestion that you drive with a Migraine is nuts! People don't drive with them either! It sounds like she is more interested in seeing you without any relief and in a wreck to boot than out of pain.

In addition, O2 does not help migraine. How did she explain that bit?

The D3 Regimen is awesome!! It will slow the ramp-up, lower the max intensity, and for many it can prevent a cycle completely. Just get your blood work done on a regular basis and have your D3, Calcium, and PTH checked. If they are good, even if the D is 'high', you will be good to go. The other two items must stay in spec. I would not be surprised if the combo of the Pred Taper and the D3 did end your cycle!!! It has done that for a lot of people - the D3. 

Neurology Today has even done an article on the lack of D3 in their patients and the issues it causes. I have hardly had a cycle in years thanks to taking those vitamins. There are others who have written on this thread who are pain free due to it as well. Anyway, if she did read to keep up on Clusters, she would know this and she would know that the ratio has finally changed after decades of it being stated that Clusters are 8-9 men to 1-2 women. This is proving out to be false after finally being looked at. Currently ratio is about 6:4 and some are already saying 5:5! So, no, it is not attached to that chromosome at all.

I went undiagnosed for over 30 years. I was given two meds in the beginning when this started in my early 20's, but after that, I was on my own. I got migraine 'shots' when it was to the point that I had to have a break from pain. But back then I was Chronic and low level. That mess would do nothing for me today.  

You did not ask, but for those shadows you can: Eat ginger or make ginger tea, drink some caffeine, try Excedrin for Migraine as it contains caffeine. I'm sure that others have suggestions to add to this short remedy list. Those are the methods that I currently use and remember.  Getting old sucks! LOL. 

[Bejeeber]

37 minutes ago, spiny said:

Getting old sucks!

My mom was a gerontology research professor at a prestigious university, and your quote above is the same as how she summed up her findings to me once (really).