Depression, MS, Epilepsy, Cluster Headaches

[CiCi54]

I am a 54 yr old female and have been diagnosed with epilepsy last yr., I have many of the symptoms of MS and a recent MRI shows lesions LP no O bands, have had cluster headaches since I was 22 now they are chronic and no med so far has been able to relieve them....now my neuro says it maybe all depression.  Frankly I find this impossible to accept given the long list of symptoms I have (too long to mention here unless asked).  I am seeing a psychiatrist for the first time this week at my asking for depression because the chronic pain is effecting life so much I no longer want to go anywhere.  I am also seeing a MS specialist this week at my request for a second opinion..  I do not know how to approach both doctors except to take the list of symptoms and history and let them sort it out.  My gut unfortunately says MS given a long history of events I am just now able to piece together.  Do I tell the psychiatrist my suspicions since my current neuro feels it is depression alone?  I want to handle this as an informed patient but not arrogant as to insult them.  Thank you.

[CiCi54]

I just want you to know...I've been found to be positive for Herpes Zoster.  It is amazing the correlation between Cluster Headaches, Seizures,  and the ongoing link between Zoster & MS grows everyday.  The diagnosis threw me for a LOOP...never ever would I have suspected herpes could or would be dorment in my brain and cause havoc when active.  You could have knocked me over with a feather at the diagnosis.  Haven't had a cole sore, shingles or chicken pox.  Please get a blood test for Herpes...there are several types, mine is Zoster not the genital type...it may explain a lot to you and your doctor.Hopefully you'll begin a journey to better health and controlled pain. (most doctors do not test for this!! It took me almost 40 years to be tested.) My best to you.

[Melby29]

Hi CiCi, I just stumbled upon your post when I was searching for Cluster Headaches. It jumped out at me, because I also have MS, Epilepsy (complex partial seizures) and Cluster Headaches. What a messed up brain I have!!! So, you are not alone. I had optic neuritis 2.5 years ago, and received my MS diagnosis about 1.5 years ago. I am currently having some visual symptoms, which - fortunately - is the first sign of anything going wrong since the ON. The CH started about 5 months after the ON. They came for about 4 weeks, gave me a break of about a month, and then came back again for another few weeks. It was only towards the end of the second round that I got a definite diagnosis from a neuro specialising in headaches (the one I was seeing for the tests etc for MS was adamant they were migraines. Idiot.). Luckily I had discovered the O2 and got my hands on some just after the second round started. The epilepsy has been around for about 15 years.

I haven't been able to find anything that gives a definite link between the 3 conditions, although I believe that it is recognised that MS patients are more likely to have epilepsy and migraines and CH. There's just nothing to show that it is part of the disease.

And I can totally understand the depression because it's a lot to have going on all at once. I can't believe you neuro put it ALL down to the depression though. It would have thought it would be the other way around! (by the way, my headache specialist told me that most of his CH patients smoke. But he said he believes it's not the smoking that causes the CH, rather it's the CH that causes them to smoke!)

I haven't found any other posts from you since the one in December, so I would be interested to see how you went with the neuro. I hope you are feeling well at the moment.

[CiCi54]

I have the copies of MRIs The radiologist remarked on the location and appearance mentioning demyelination but without contrast it was not sensitive enough to see more.  My primary suspects MS and thought a second opinion is a good idea.  I wrote down all symptoms, which I can remember over the past few years and gave them to my neuro and pc - I suppose that plus my pushing is why I finally have appt. with MS specialist. I readily admit to being depressed. When your world shrinks and pain is constant...you tend to fall off the deep end!  At any rate I do look at reputable sites for symptoms etc. which have helped me when trying to remember - but the DX - I'd be afraid to do that!!!  Thank you for your words.

[johnniebear]

sounds like alot on your plate..

you should get a copy of MRI reports,  also not all lesions are MS related..

TRy to be careful  about  self DX and that darn  DR. Google

take care,
JB

[SarahL2491]

Narrow your list to just things you feel are MS related and then choose 3 that bother you the most and concentrate on those; they tend to get lost in the details when you have too much.  Create sort of a timeline as to when these happen to you, say, monthly.

Ask to see your MRI, ask them to show you the lesions and what they think they represent.  By all means, tell the psych how you feel about the MS possibility, it plays into your totality.

You did not state any of your MS symptoms, if you feel comfortable sharing them, we are always here to listen.